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[House Hearing, 106 Congress]
[From the U.S. Government Publishing Office]

   HEPATITIS C: ACCESS, TESTING, AND TREATMENT IN THE VA HEALTH CARE 
                                 SYSTEM

=======================================================================

                                HEARING

                               before the

                   SUBCOMMITTEE ON NATIONAL SECURITY,
                  VETERANS AFFAIRS, AND INTERNATIONAL
                               RELATIONS

                                 of the

                              COMMITTEE ON
                           GOVERNMENT REFORM

                        HOUSE OF REPRESENTATIVES

                       ONE HUNDRED SIXTH CONGRESS

                             SECOND SESSION

                               __________

                             JULY 12, 2000

                               __________

                           Serial No. 106-241

                               __________

       Printed for the use of the Committee on Government Reform

  Available via the World Wide Web: http://www.gpo.gov/congress/house
                      http://www.house.gov/reform

                               __________

                    U.S. GOVERNMENT PRINTING OFFICE
73-167                     WASHINGTON : 2001

_______________________________________________________________________
 For sale by the Superintendent of Documents, U.S. Government Printing 
                                 Office
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                     COMMITTEE ON GOVERNMENT REFORM

                     DAN BURTON, Indiana, Chairman
BENJAMIN A. GILMAN, New York         HENRY A. WAXMAN, California
CONSTANCE A. MORELLA, Maryland       TOM LANTOS, California
CHRISTOPHER SHAYS, Connecticut       ROBERT E. WISE, Jr., West Virginia
ILEANA ROS-LEHTINEN, Florida         MAJOR R. OWENS, New York
JOHN M. McHUGH, New York             EDOLPHUS TOWNS, New York
STEPHEN HORN, California             PAUL E. KANJORSKI, Pennsylvania
JOHN L. MICA, Florida                PATSY T. MINK, Hawaii
THOMAS M. DAVIS, Virginia            CAROLYN B. MALONEY, New York
DAVID M. McINTOSH, Indiana           ELEANOR HOLMES NORTON, Washington, 
MARK E. SOUDER, Indiana                  DC
JOE SCARBOROUGH, Florida             CHAKA FATTAH, Pennsylvania
STEVEN C. LaTOURETTE, Ohio           ELIJAH E. CUMMINGS, Maryland
MARSHALL ``MARK'' SANFORD, South     DENNIS J. KUCINICH, Ohio
    Carolina                         ROD R. BLAGOJEVICH, Illinois
BOB BARR, Georgia                    DANNY K. DAVIS, Illinois
DAN MILLER, Florida                  JOHN F. TIERNEY, Massachusetts
ASA HUTCHINSON, Arkansas             JIM TURNER, Texas
LEE TERRY, Nebraska                  THOMAS H. ALLEN, Maine
JUDY BIGGERT, Illinois               HAROLD E. FORD, Jr., Tennessee
GREG WALDEN, Oregon                  JANICE D. SCHAKOWSKY, Illinois
DOUG OSE, California                             ------
PAUL RYAN, Wisconsin                 BERNARD SANDERS, Vermont 
HELEN CHENOWETH-HAGE, Idaho              (Independent)
DAVID VITTER, Louisiana

                      Kevin Binger, Staff Director
                 Daniel R. Moll, Deputy Staff Director
                     James C. Wilson, Chief Counsel
                        Robert A. Briggs, Clerk
                 Phil Schiliro, Minority Staff Director
                                 ------                                

Subcommittee on National Security, Veterans Affairs, and International 
                               Relations

                CHRISTOPHER SHAYS, Connecticut, Chairman
MARK E. SOUDER, Indiana              ROD R. BLAGOJEVICH, Illinois
ILEANA ROS-LEHTINEN, Florida         TOM LANTOS, California
JOHN M. McHUGH, New York             ROBERT E. WISE, Jr., West Virginia
JOHN L. MICA, Florida                JOHN F. TIERNEY, Massachusetts
DAVID M. McINTOSH, Indiana           THOMAS H. ALLEN, Maine
MARSHALL ``MARK'' SANFORD, South     EDOLPHUS TOWNS, New York
    Carolina                         BERNARD SANDERS, Vermont 
LEE TERRY, Nebraska                      (Independent)
JUDY BIGGERT, Illinois               JANICE D. SCHAKOWSKY, Illinois
HELEN CHENOWETH-HAGE, Idaho

                               Ex Officio

DAN BURTON, Indiana                  HENRY A. WAXMAN, California
            Lawrence J. Halloran, Staff Director and Counsel
              Kristine McElroy, Professional Staff Member
                           Jason Chung, Clerk
                    David Rapallo, Minority Counsel

                            C O N T E N T S

                              ----------                              
                                                                   Page
Hearing held on July 12, 2000....................................     1
Statement of:
    Baker, Terry, executive director, Veterans Aimed Towards 
      Awareness, Inc.............................................    16
    Brau, Dr. Norbert, M.D., staff physician, Bronx VA Medical 
      Center.....................................................    83
    Bryant, James A., Vietnam veteran........................... 24, 27
    French, Heather, Miss America 2000...........................     5
    Ho, Dr. Samuel B., M.D., staff physician, Minneapolis VA 
      Medical Center.............................................    72
    Holohan, Dr. Thomas V., M.D., Chief, Patient Care Services 
      Officer, Veterans Health Administration, accompanied by 
      Jimmy Norris, Chief Financial Officer, Veterans Health 
      Administration.............................................    51
    Iber, Dr. Frank, M.D., hepatologist, volunteer at Hines VA 
      Medical Center, Hines, IL..................................    88
    Lesinski, Martin P., Vietnam veteran.........................    37
Letters, statements, etc., submitted for the record by:
    Baker, Terry, executive director, Veterans Aimed Towards 
      Awareness, Inc., prepared statement of.....................    19
    Brau, Dr. Norbert, M.D., staff physician, Bronx VA Medical 
      Center, prepared statement of..............................    86
    Bryant, James A., Vietnam veteran, prepared statement of.....    30
    French, Heather, Miss America 2000, prepared statement of....     9
    Ho, Dr. Samuel B., M.D., staff physician, Minneapolis VA 
      Medical Center, prepared statement of......................    75
    Holohan, Dr. Thomas V., M.D., Chief, Patient Care Services 
      Officer, Veterans Health Administration, prepared statement 
      of.........................................................    54
    Iber, Dr. Frank, M.D., hepatologist, volunteer at Hines VA 
      Medical Center, Hines, IL, prepared statement of...........    90
    Lesinski, Martin P., Vietnam veteran, prepared statement of..    40
    Shays, Hon. Christopher, a Representative in Congress from 
      the State of Connecticut, prepared statement of............     3

 
   HEPATITIS C: ACCESS, TESTING, AND TREATMENT IN THE VA HEALTH CARE 
                                 SYSTEM

                              ----------                              

                        WEDNESDAY, JULY 12, 2000

                  House of Representatives,
       Subcommittee on National Security, Veterans 
              Affairs, and International Relations,
                            Committee on Government Reform,
                                                    Washington, DC.
    The subcommittee met, pursuant to notice, at 10:06 a.m., in 
room 2154, Rayburn House Office Building, Hon. Christopher 
Shays (chairman of the subcommittee) presiding.
    Present: Representatives Shays, Souder, Tierney, and Allen.
    Also present: Representative Snyder.
    Staff present: Lawrence J. Halloran, staff director and 
counsel; Robert Newman and Kristine McElroy, professional staff 
members; Jason M. Chung, clerk; David Rapallo, minority 
counsel; and Ellen Rayner, minority clerk.
    Mr. Shays. The hearing will come to order.
    I would like to welcome our witnesses and our guests.
    In confronting the epidemic of hepatitis C virus [HCV] 
infection, which afflicts veterans five to six times more often 
than the general population, the Department of Veterans Affairs 
[VA] is leading other public health systems in the development 
of screening, diagnostic, and treatment protocols. But since 
the program announcement 18 months ago, we have begun to 
question whether the VA health care system is capable of 
carrying out those protocols and delivering on the promise to 
conduct a sustained campaign against the silent killer.
    Time is running out. A potentially fatal biological clock 
is ticking down for many thousands infected by HCV-tainted 
blood and blood products during the 1970's and 1980's. Unless 
they are told they are at risk, tested, and appropriately 
treated, many will suffer liver damage beyond the reach of 
current medical therapies.
    VA acknowledges the potential scope and genuine urgency of 
the problem, with 18 to 20 percent of veterans testing positive 
for HCV antibodies. Yet veterans' advocates report inordinately 
long waits for appointments with liver specialists and 
inconsistent approaches to HCV care between VA regions. The 
percentage of HCV-positive veterans enrolled in the only 
effectively, but costly, drug treatment is well below some VA 
projections of just a year ago. The scarcity of qualified 
specialists and the rigid criteria used to exclude so many from 
treatment in some areas raise legitimate questions whether VA 
medical network directors are being given the organizational 
and budgetary support needed to drive this ambitious program.
    Recently, VA addressed the apparent fiscal disincentives to 
aggressive hepatitis C outreach by allocating $20 million in 
reserve funding to the networks based on HCV-related expenses 
this year. More permanent incentives will be included in 
regional funding formulas for next year.
    This is our third oversight hearing on the VA's hepatitis C 
program. Last year, witnesses described the fiscal and 
operational challenges posed by the still new-born program. 
Last June, testimony described growing pains, but progress in 
contacting veterans, standardizing care, and making treatments 
more available.
    But today the question remains whether a consistent, 
effective, and truly national hepatitis C program is being 
constructed across the decentralized VA health care system. How 
can a sometimes resistant, sluggish bureaucracy adapt to the 
unique, changing demands for HCV treatment? These are the 
critical questions we are asking our witnesses to address this 
morning.
    Speaking for veterans affected by hepatitis C, our first 
panel is graced by the presence of the reigning Miss America, 
Miss Heather French. She has made it a central element of her 
public life to advocate on behalf of homeless veterans. We 
thank her for all she does to heighten public awareness of 
veterans' needs, and we are grateful she is able to join us 
today.
    All our witnesses bring important perspectives and 
experiences to our discussion of the VA hepatitis C initiative, 
and we look forward to their testimony as well.
    [The prepared statement of Hon. Christopher Shays follows:]

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    Mr. Shays. Let me now turn to the ranking member of the 
committee, Mr. Tierney, if he would like to make any statement.
    Mr. Tierney. I have no opening statement, Mr. Chairman, but 
I will defer to either one of my colleagues if they would care 
to say something.
    Mr. Shays. Mr. Allen.
    Mr. Allen. Very briefly, Mr. Chairman. I just would say I 
thank you for holding this hearing. I think those of us, no 
matter where we live in this country and whom we represent, we 
are dealing with a struggle that so many of our veterans, 
particularly of the Vietnam era, are homeless and have a 
variety of disabilities and a variety of problems that go along 
with that. I think this hearing is an important one today, and 
I simply want to say thank you for holding it.
    Mr. Shays. I thank the gentleman.
    We are also privileged to have Vic Snyder from Arkansas, 
who serves on the Armed Services Committee and also on the 
Veterans Committee, I think on the subcommittee on health. It 
is nice to have you here as well. Welcome. If you would like to 
make any comment?
    Mr. Snyder. No, thank you.
    Mr. Shays. As is our custom and practice, we swear in all 
our witnesses. I would welcome you all to stand and we will 
swear you in.
    Raise your right hands, please.
    [Witnesses sworn.]
    Mr. Shays. For the record, all of our witnesses have 
responded in the affirmative.
    And if I could, just to get some housekeeping out of the 
way and then we will recognize you, Miss French. I ask 
unanimous consent that all members of the subcommittee be 
permitted to place an opening statement in the record and that 
the record remain open for 3 days for that purpose. Without 
objection, so ordered.
    I ask further unanimous consent that all witnesses be 
permitted to include their written statement in the record. 
Without objection, so ordered.
    Miss French, I know you have an extraordinarily busy 
schedule and that you will need to leave here in about a half 
an hour. We are going to have you give your testimony. I think 
we will be able to have Mr. Baker, Mr. Bryant, and Mr. Lesinski 
give their testimony, it will be within 5 minutes I think, and 
then we will proceed to ask you a question or two. And if we 
are not able to get through the testimony, we will interrupt 
and make sure that we have some questions for you. Welcome. 
Great to have you.

         STATEMENT OF HEATHER FRENCH, MISS AMERICA 2000

    Miss French. Chairman Shays and members of the 
subcommittee, I thank you from the bottom of my heart for 
allowing me to be here to represent millions of our American 
veterans, especially those who are continuing to fight for 
their health, fighting to regain their health. For so many, as 
you know, the war continues on. It did not end when they came 
home.
    As Miss America 2000, I have been able to travel this 
country with a great trophy--not a trophy that since September 
18 belongs to me, but a trophy that belongs to 25 million 
American veterans. I have carried this crown around the country 
with me to represent every veteran. Every stone, every sparkle, 
it is their trophy, not mine. I know a lot of you today ask 
yourselves why does a 25 year-old fashion designer who has 
become Miss America care about veterans' issues. I will tell 
you why.
    First and foremost, beyond being Miss America, I am the 
very proud daughter of a disabled Vietnam veteran. At the age 
of 4 my father started taking me into the VA hospital with him 
to receive treatment. At that time, there was a very long 
waiting period for his treatments. But it was at that time that 
I learned the greatest lesson of responsibility concerning our 
veterans. And that is, where veterans are concerned, it is so 
much better to listen, not just with your ears but with your 
heart, because it does not just make a difference in how you 
treat our veterans, it makes the difference in how we respect 
their service.
    Then growing up, as a young adult I started running for 
Miss America and realized that the spotlight for Miss America 
could spread a spotlight on issues that this country did not 
know about. We could expose issues that our veterans needed to 
have exposed. We could gain them a better present and, more 
importantly, a better future.
    This year I have recorded about 20,000 miles each month, 1 
day off a month, and have been able to see the different faces 
of the Nation where veterans' issues are concerned. I have 
travelled State to State. I have been able to embark upon many 
wonderful issues this year. One of those not just being 
homelessness among veterans, but because of Vietnam Veterans of 
America and Veterans Aimed Toward Awareness, I have now 
embarked upon a tour fighting the silent enemy hepatitis C.
    At one of the screenings that we have done together this 
year, almost 30 percent of the veterans at a particular event 
were diagnosed positive for hepatitis C. I do not think I need 
to tell you that 4 million Americans today are infected with 
hepatitis C. And as Chairman Shays said earlier, veterans are 
five, six times more likely to receive hepatitis C because of 
their one common denominator, and that would be their service 
to our country.
    It has come to my attention that many of our veterans are 
scared to get tested. Many do not know how they could have been 
infected. But what we want to see is a more consistent approach 
to hepatitis C across the country. My father has told me 
countless stories of carrying his friends' bodies off the 
battlefield, being drenched in blood for days. Of course, we 
have to look at a very high risk factor of blood transfusions. 
Two years alone in Vietnam there were over 365,000 blood 
transfusions. And what about the helicopter pilots, the medics, 
the nurses, the surgeons who were over there as well. And I do 
not think I even have to express my opinion about the 5 to 8 
percent of those in the Vietnam population who are hepatitis C 
positive.
    We sent 2 million of our soldiers, we deployed them to 
Vietnam, into combat, they were unprotected from hepatitis C. 
Therefore, I do not think it is a coincidence that almost 10 
percent of our American veterans are infected with hepatitis C. 
I believe that one common denominator comes down, again, to 
their service to this country.
    There is an effective treatment we have been able to tell 
millions of veterans across the country who have gotten 
screened. However, we do not believe that treatment is 
consistent across the country. Some of the veterans I have 
talked to have expressed their concern of not being able to 
receive treatment, getting screened, or getting tested. My 
question is, why?
    I understand that we have a very decentralized VA system. I 
understand that the veterans in Louisville, KY are not the same 
as the veterans in New York City. However, a veteran who has 
hepatitis C in Louisville, KY is the same as a veteran who has 
hepatitis C in New York City. I am interested in why even the 
Centers of Excellence in our country do not have the funding or 
the staff to meet the needs of the veterans that are coming in 
their doors.
    I have visited the Miami Medical Center. They are a Center 
of Excellence. Yet, it was expressed to me that they received 
less than $300,000 last year for hepatitis C treatment. I have 
been to the New York Harbor Side Health Care System. They are a 
Center of Excellence for hepatitis C. Their hepatitis C team 
expressed to me that they had to use their vacation time, their 
lunch time, their breaks in order to meet the needs of their 
current hepatitis C-positive population. My question is what 
happens in a year or two when 2,000 more hepatitis C-positive 
patients come to them for treatment. What happens then?
    So again we ask you to look at the VA health system. We 
need to implement a plan that is consistent across the board 
from all VA perspectives, throughout all regions, because our 
veterans in this United States deserve that much. They deserve 
the chance to walk into a VA and be welcomed. When a dear 
friend of mine, Butch Silvey came to me in Augusta, KY, a 
disabled Vietnam veteran, during my homecoming he handed me a 
present that reminds me every single day why I fight and the 
price that he paid. This gentleman was sent to Vietnam, was 
shot not once, not twice, but three times. He received this 
Purple Heart. He gave this to me to remember why I fight every 
day. This is the price that has been paid.
    Everyday our veterans are being left behind. They are not 
being treated, not being screened, not being respected for 
their service. My question again, how many have to suffer, how 
many have to die before we wake up and take notice? This is our 
responsibility to this Nation.
    Also, it is our responsibility to set the stage for our 
coming generations, our children. I understand that 1 day we 
will wake up and the voice we had will have been passed on to 
our children. So what type of legacy are we leaving for our 
children. Are we leaving a legacy of responsibility, of 
accountability? Do they know how to take care of our veterans? 
I think the mistreatment of thousands of hepatitis C-positive 
veterans would say otherwise. It tells a whole different story.
    So today it is your choice to make that stand. It is your 
choice to face the wind. We need to be a hero to these 
veterans. We need to be a hero to our children, because I 
believe the American people are looking for those who dare to 
talk the talk and walk the walk. I think a lot of veterans in 
this room will agree with me that we are long tired of the 
patronizing speeches of Veteran's Day, those who patronize our 
veterans 1 day, leave them in a waiting line the next. It is 
time to live up to that promise.
    I encourage you, as you listen to my remarks, as you take 
them to ponder on, remember this one thing: The choices you 
make today reflect upon the American society. Their character 
is a reflection of you. You make their choices for them. So I 
ask that you please be wise, be compassionate where veterans 
are concerned because the decisions you make will depict how 
our veterans are proud of their service. I would ask you that 
you make the decisions that let them be proud to be American 
veterans. Thank you.
    [Applause.]
    [The prepared statement of Miss French follows:]

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    Mr. Shays. Thank you, Miss French.
    Mr. Baker.

 STATEMENT OF TERRY BAKER, EXECUTIVE DIRECTOR, VETERANS AIMED 
                    TOWARDS AWARENESS, INC.

    Mr. Baker. Dear Mr. Chairman and other distinguished guests 
of the subcommittee, on behalf of Veterans Aimed Toward 
Awareness [VATA], a support group for veterans with hepatitis 
C, and Vietnam Veterans of America Chapter 83, I am honored to 
be here a second time regarding the VA's handling of the 
hepatitis C epidemic.
    Since June 9, 1999, when we last met, I have been traveling 
around the country talking to veterans, offering them hepatitis 
C testing and counseling, visiting VA hospitals and clinics, 
and corresponding with Dr. Garthwaite and his counterparts. I 
have attended one of the VA's training symposiums on hepatitis 
C and visited the Miami Hepatitis C Center of Excellence.
    Members of the committee, other than the efforts of my 
organization to provide education, counseling, and testing, I 
have not seen the proactive or aggressive efforts on the part 
of the VA which they promised this committee on June 9, 1999.
    Talking with veterans, I have found that the VA's approach 
to treatment is only to treat those veterans who have high 
liver enzyme levels, those who have symptomatic liver disease, 
and those who are possibly beyond help, instead of treating the 
veterans who could benefit most from the dual therapy. In my 
view, the VA is treating the veterans who will benefit the 
least.
    In fact, in a letter to this committee dated June 28, 2000, 
Dr. Garthwaite seemed proud of the fact that 78 percent of 
veterans receiving treatment within the VA are designated into 
the ``complex care'' category. I believe that Dr. Garthwaite 
intended to impress upon you and this committee that HCV cases 
are being properly reimbursed to the medical centers. In fact, 
78 percent of all veterans being treated fall into the complex 
care category because the VAMCs are treating only those 
veterans who are sick enough to meet the strict criteria of 
being a complex care patient in the VA.
    Furthermore, it is my humble opinion that most treatment is 
being reserved for complex care patients because VAMCs realize 
that they cannot afford to start basic care patient on the 
expensive therapy because they only generate $4,000 per patient 
per year. They are well aware that the estimated VA HCV patient 
needs care with an average cost to the VA of between $25,000 
and $40,000. To treat HCV patients who fall into the basic care 
category would bankrupt the particular hospital delivering the 
care. The VA medical centers must wait for their HCV patients 
to progress to more serious complications, like ascites, in 
order for the medical records of the patients to note the 
appropriate diagnostic codes to allow the VA medical center to 
collect the complex care funding.
    One of the only VISNs that treats the virus as the sole 
enemy is VISN 13, under the supervision of Dr. Sam Ho. If VA 
ever designates another Center of Excellence in hepatitis C 
care, it should be Dr. Ho's. He and Dr. Petzel treat veterans 
with real respect and see HCV as a disease that can and should 
be eradicated from every veteran, no questions asked.
    Following last year's hearing, we approached Dr. Garthwaite 
about assisting the individual VISNs with their HCV programs 
and helping them improve particular HCV-related shortcomings 
witnessed is various VISNs. He told us to direct our concerns 
to the individual VISNs, which we did by letters to each VISN 
this past March. To our surprise, instead of working with the 
particular VISNs on HCV, as originally instructed by Dr. 
Garthwaite, we received one letter from VA central office on 
behalf of all 21 VISNs. So much for a decentralized system.
    Concerning all the correspondence that we have had with 
central office, it certainly seems to me that someone is trying 
to placate me. Because there are more important matters to 
discuss, and there is little time now, I have brought these 
letters and correspondence so that you can review them at a 
later date.
    I have been asked to followup on the examples that I 
produced last year. Mr. Chairman, I am sorry to report that 
these veterans' lives have gotten dramatically worse. The 
veteran from Idaho was finally tested, but has not yet been 
allowed to receive treatment in VISN 19. In fact, he has been 
told that despite evidence of fibrosis of the liver, his enzyme 
levels are not elevated enough to consider him for treatment. 
As for the veteran from Montana, the VA has done a fine job. He 
was never treated for his hepatitis C, and in November of last 
year he succumbed to complications from a liver transplant due 
to hepatitis C. I attended his funeral.
    In the case of my personal friend from New Jersey that 
served with the 173rd Airborne, he is now No. 7 on the liver 
transplant waiting list. Even though we personally delivered 
his case to Dr. Garthwaite, no, I repeat no action has been 
taken. The VA continues to maintain that this recipient of the 
Bronze Star for Valor cannot show a nexus between his service 
and his hepatitis C infection because his duty assignment was 
not ``medic.'' So much for serving one's country and believing 
that one's country will bind up the wounds of battle.
    Committee members, I must stress that while the VA tells us 
that they are doing all that they can, the veterans caught in 
the middle of this war do not have the time for the VA to 
continually drag their feet. I have personally, along with some 
fine people, brought forth more awareness from my little office 
than all of the VA.
    I find it appalling and take great umbrage at the 
duplicitous nature of the VA's central office. There are 
solutions to these problems, and I think that if a simple, 
long-haired country boy like me can figure them out, so can 
these highly educated people. Simple things, like letting 
infectious disease physicians actively assist in providing 
treatment for this disease. If the VA has a shortage of 
gastroenterologists, then let us use the currently under-
utilized infrastructure that was built within the VA to provide 
treatment for AIDS. Let us use them to treat HCV. After all, 
the therapy is very similar and HCV is an infectious disease. 
If we still do not have enough manpower, let us look at 
flexible hiring schemes.
    Another important point to consider is that the VA should 
really be one VA when it comes to this disease. For example, a 
veteran from Montana should not have to relocate to Phoenix to 
get treatment. For more suggestions, I will be glad to meet 
with the committee and the VA to develop a more productive 
program for our hepatitis C patients. In fact, I would like to 
volunteer to serve on the Advisory Committee that the VA Office 
of the Inspector General recommended that the VHA establish to 
deal with the HCV health delivery issue.
    Dear Chairman Shays and members of the subcommittee, on 
behalf of the men and women who risked their lives for our 
country and who now face an even greater battle against 
hepatitis C and the Department of Veterans Affairs, I beg you 
to examine the actions that the VA has taken regarding the 
hepatitis C issue, and for you, the committee, to take action 
to ensure that the VA does what it is designed for. And I quote 
Joe Thompson, Under Secretary for Benefits, in the February/
March issue of the VVA Veteran, ``We're the ones who have been 
entrusted by American citizens to help veterans. That's our 
mission.''
    Mr. Chairman and members of the committee, thank you very 
much.
    [Applause.]
    [The prepared statement of Mr. Baker follows:]

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    Mr. Shays. Thank you, Mr. Baker.
    We are going to suspend due to the applause from the 
audience. I am sorry, I should have stated that before Miss 
French spoke.
    Mr. Baker, I apologize for not properly introducing you. 
You are the executive director of the Veterans Aimed Toward 
Awareness, Inc., and also a Vietnam veteran. Correct?
    Mr. Baker. Yes, sir.
    Mr. Shays. Also, we have Mr. James A. Bryant, a Vietnam 
veteran, who will speak next, and then Mr. Martin Lesinski, 
also a Vietnam veteran.
    It is the practice of this committee to have our veterans 
speak before the Department speaks. We appreciate the 
Department waiving their protocol, in a sense, to address 
first. It is appreciated that they come to listen to what you 
have to say.
    Mr. Bryant.

         STATEMENT OF JAMES A. BRYANT, VIETNAM VETERAN

    Mr. Bryant. Good morning, Mr. Chairman and members of the 
subcommittee. I am beyond honored to be here this morning. My 
name is James Bryant. I am a military veteran, a 100 percent 
service-connected veteran for issues other than hepatitis C. I 
currently reside in Stevens County in Washington State. I am 
honored to tell you about my experiences as a veteran with 
hepatitis C seeking treatment through the VA health care 
system.
    During my service in the Navy I made two 9-month cruises to 
the Gulf of Tonkin as an aviation fire control technician. 
After being medically discharged in 1973 for ulcerative 
colitis, which is an inflammation of the small bowel or colon, 
I underwent colon surgery at a VA hospital in 1978.
    Mr. Shays. Mr. Bryant, I am going to have you start your 
testimony when we get back from voting. My concern is that Miss 
French is going to be unable to be here when we get back. There 
are just one or two questions that I think we would just like 
to quickly ask here, and then we will treat all three of you as 
a separate panel.
    Mr. Bryant. Absolutely. That is fine, sir.
    Mr. Shays. Miss French, I would just start by saying that 
in your travels, which are extensive, you focus on entirely on 
veterans' issues, is that correct?
    Miss French. Yes. Approximately 99.9 percent of my time is 
veterans' issues-related.
    Mr. Shays. So almost every day you are in contact with 
veterans.
    Miss French. Yes, that is true.
    Mr. Shays. In your role, how would you evaluate the 
veterans' knowledge of the services that are available, and 
particularly as it relates to hepatitis C?
    Miss French. It has been brought up to me more than a 
handful of times the fact that veterans do not know what they 
are entitled to. I just spoke with a panel of veterans 2 days 
ago in Allentown, PA, and they expressed their displeasure in 
not being able to find out about the services that could help 
them. When I told them about hepatitis C, they did not know 
about the increase in the veteran population, about the 
epidemic. So I do think it is something that needs to be 
addressed on getting information to the veterans. We talked 
about several ways to do that--perhaps a data base. I 
understand that the VA cannot advertise their services because 
they are a Federal agency, however, it is a large issue.
    Mr. Shays. I was at an event in the Fairfield/Bridgeport 
area of Connecticut and I was pretty amazed with how open the 
veterans were to you in discussing their challenges. Have you 
had occasion to sit down with the people from the VA and talk 
about what you are learning?
    Miss French. Actually, I was Miss Kentucky before I was 
Miss America, and I was brought up to Washington and met with 
several of the dignitaries from the VA system nationally. What 
we have discussed throughout the year is my experience with the 
veterans, what I have seen, and we have constant 
correspondence. However, the meeting yesterday with the 
veterans produced some new questions for me to ask. One of them 
is, if Medicare and Social Security can advertise for increased 
enrollment, then why can't the VA system with their veterans? 
It is a concern of mine, something that I do intend to address.
    They want to get hepatitis C information, they want to 
increase the enrollment, they want veterans to come in and get 
tested and treated, however there has been no action taken to 
increase the staffing. If we see 2,000 new veterans come into a 
hospital in a year or two, it has been said that they intend on 
keeping the same number of staff members to treat those 
veterans as well. I do not see that as a possibility.
    Mr. Shays. We have limited time before we have to go vote, 
so I would welcome questions from Mr. Tierney and any of the 
other Members.
    Mr. Tierney. Thank you, Mr. Chairman.
    I do not have a question, I just want to thank you very 
much. I thought your testimony was well done, and you are doing 
a great service for everyone by using your position, I might 
say, to full advantage.
    Miss French. Thank you.
    Mr. Tierney. The chairman was with me on a hearing we had 
about community-based outreach clinics within the veterans 
service. I think there is more that we can do with those 
entities in terms of outreach on that. I suspect that there is 
nothing to stop any of the Members of Congress from tying it to 
their Web sites some information about that as a matter of 
outreach on that. I would think that might be one avenue for us 
all to pursue. And last, many of us send out newsletters 
periodically under our franking privilege. We sent out one that 
just mentioned veterans benefits for prescription drugs and got 
500 phone calls the very next day. So that if we use those 
resources, and with your assistance, also the VA and tying 
those things together, we might have some success on that. So 
again, I want to thank you for what you have been doing, and I 
would defer to my colleagues if they have any questions.
    Mr. Allen. Thank you very much. An excellent job. Just a 
quick question. In talking to veterans, do you find any pattern 
emerging, either specifically with respect to hepatitis C or 
any others, just in terms of the administration, how difficult 
it is for them to get care? You are talking to lots of veterans 
and a quick question is what are you picking up?
    Miss French. Right. Every other day I am in a different 
city across this country, and every other day I hear the same 
stories about the difficulties with getting treatment, 
difficulties in getting screened, especially filling out the 
paperwork. Probably my greatest displeasure is in seeing the 
hope being lost in veterans who for 4 and 6 weeks have to keep 
coming back in to the VA to stand in another line to be told 
that they need to wait another 4 or 6 weeks to even see a 
physician. That is something that is reoccurring too often. And 
when you think that I travel 20,000 miles a month, I think it 
is hitting the majority of our veterans.
    Mr. Allen. Thank you very much.
    Mr. Shays. Mr. Snyder.
    Mr. Snyder. Thank you, Mr. Chairman, and thank you for 
allowing me to participate in the hearing today.
    Heather, the number that you have in here, the 365,000 
blood transfusions, I assume the majority of those were 
probably in 1968 which was a very bloody year there. I think 
one of our VA witnesses later on has an anecdote there of a 
patient he talks about that may or may not have received a 
blood transfusion but when some ordinance went off, a piece of 
bone from the man next to him was imbedded in his leg. It seems 
like the tougher issues are not the transfusion issues, they 
are the exposure to blood issues. But I think that figure 
really brings home the number, that for every 365,000 that had 
transfusion there were a whole lot of others that were exposed 
to blood. The issue is how likely is it in a combat situation 
to acquire the virus through splattered blood if you did not 
get the transfusion itself.
    I want to make the point too, and I know you agree with 
this, I think this focus on veterans and this issue is very 
important. As a Vietnam veteran, I feel very strongly about it. 
But I do not want our non-veteran population out there to 
somehow think they are immune from this. This was brought home 
to me 2 years ago when one of my employees received a call from 
her husband 1 day that he was not feeling well, had been in 
good health at age 43, and 2 weeks later passed away from 
undiagnosed hepatitis C. This is a very real issue out there, 
and not just for veterans but for our entire population, and I 
appreciate your work on these issues.
    Miss French. Thank you. Something I would like to share 
with you, too. Representative Allen, you had asked what was 
occurring in our system. A woman wrote me a letter about her 
husband who in 1978 was diagnosed with non-A/non-B, which now 
we attribute to hepatitis C. He went back into the service, 
then went into the hospital again, and this is 1978 we are 
talking about, was discharged medically, came home and became 
very ill in 1997. Of course, hepatitis C can take 28 to 30 
years to show any symptoms at all. He was sent away from the VA 
with flu.
    Well, as many know, hepatitis C has flu-like symptoms. The 
VA failed to check his medical records to see that he was 
diagnosed with non-A/non-B back in 1978. So the very next day 
he came back into the emergency room with liver failure, had to 
get a liver transplant, and as this woman said, and I quote 
from her letter, ``Again I am sorry for taking up your time and 
I hope that you understand my point, because you see, Miss 
French, on April 23, 1999, a big part of my life died that day 
when my husband died.'' I believe that these things could be 
prevented with more consistent health care.
    Mr. Shays. We have about 5 minutes to vote. You have many 
duties to attend to as well.
    Gentlemen, we will be back to continue this panel after the 
vote.
    We stand in recess.
    [Recess.]
    Mr. Shays. Mr. Baker, we thank you for your testimony you 
have completed, but, Mr. Bryant, we are going to start you over 
again, OK?
    Mr. Bryant. Yes, sir.
    Mr. Shays. We will go from the beginning. We have no rush, 
so you take your time.

         STATEMENT OF JAMES A. BRYANT, VIETNAM VETERAN

    Mr. Bryant. Before I start, I want to say that I am 
overwhelmed with the honor and the responsibility that has been 
given me that I have just begun to realize in listening to 
stories of three people, including yourself, Mr. Shays, that I 
have never met before and they are all the same but were all 
different.
    Mr. Chairman and members of the subcommittee, good morning.
    My name is James Bryant. I am 100 percent service-connected 
military veteran and I was 100 percent service-connected for 
other issues before my HCV. I currently reside in Stevens 
County, WA. I am honored to be here to tell you about my 
experience as a veteran with hepatitis C seeking care and 
treatment through the VA health care system.
    During my service in the Navy, I made two 9-month cruises 
to the Gulf of Tonkin as an aviation fire control technician. 
After being medically discharged in 1973 for ulcerative 
colitis, which is an inflammation of the small bowel or colon, 
I underwent colon surgery at a VA hospital in 1978. During this 
surgery to remove my colon I was given several units of blood. 
This blood, I am told, is my most likely point of infection 
with hepatitis C.
    I was diagnosed with hepatitis C in 1994 when the doctors 
at the Spokane VA hospital told me about my hepatitis C 
infection. I had many questions but I received very little 
information and even less support. Instead, all the VA doctors 
said was, ``Don't worry, your liver function tests are only 
slightly elevated so there is no reason to believe there is any 
on-going liver damage.'' In essence, don't sweat it, just don't 
drink alcohol. The VA doctors at the Seattle VA hospital also 
told me that since my LFTs were less than twice normal, I was 
not a good candidate for interferon treatment and they would 
let me know if they saw any problems developing or if there 
were any advances or improvements in treatment.
    That was mid-1994. From then until early 1999, the VA never 
contacted me for any consults or check-ups regarding my 
hepatitis C. During that time though, I began to see an 
escalating theme in my life of fatigue and what I now call 
brain fog. Any physical exertion wore me out. I decided to do 
my own research on the internet. I became concerned that I 
really had absolutely no information about the health of my 
liver.
    In early 1999 I went to an appointment at the Spokane VA 
hospital and I shared my concerns about my hepatitis C and the 
health of my liver with a VA doctor. I asked for a liver biopsy 
and a viral load test, as those were the VA's own procedures 
for treatment of hepatitis C. I was shocked and surprised by 
his answers, that: (1) This hospital has a policy of not doing 
liver biopsies; (2) In looking at your past LFT tests, you do 
not meet the protocols for interferon treatment as they are 
below twice normal; and (3) I will order you a viral load test 
and we will discuss it at your next appointment in 3 months.
    On my next appointment, my viral load tests revealed high 
hepatitis C activity. I asked for a genotype test because some 
hepatitis C genotypes are much more resistant to treatment than 
others. This test was also refused. I did, however, get an 
appointment for a consultation at the GI clinic at the Spokane 
VA hospital. I was told that it would be a lengthy wait as 
there was now no full-time GI doctor at the hospital, only a 
part-time retired doctor handling the GI clinic.
    At my first GI clinic visit, I again asked for a liver 
biopsy, a viral load test, and a genotyping test. Dr. Roberts 
apologized and said that the hospital had a policy against 
liver biopsies and does not, as a matter of course, do 
genotyping. He said he had tried with previous patients and had 
been refused by the hospital administration. Dr. Roberts then 
put me through the required hoops to rule out other possible 
causes for my high liver function numbers.
    At my next visit to the Spokane VA hospital in early 
January 2000, I again asked for a liver biopsy, a viral load 
test, and a genotype test. The then VA physician, Dr. Pavey 
told me that all of these tests were a waste of time and VA 
money, that biopsies were risky and that I should be glad for 
Rebetron treatment as it is very expensive. Finally, I started 
Rebetron combination therapy January 18th of this year.
    The last part of my hepatitis C story is bittersweet. The 
good news is that just last month viral load tests came back 
``undetectable,'' meaning a count below 8,000. The bad news is 
that there was not enough virus in my system for a genotype 
test when the VA finally did decide to run the test. Now there 
is no way for the doctors to determine whether I should 
continue with hepatitis C treatment or not. You see, different 
hepatitis C genotypes respond differently to treatment and 
dictate how long a person should remain on treatment. But in my 
case, they do not know because they do not have the information 
they need.
    So they have left the decision up to me--do I continue with 
an extremely exhausting treatment for another 6 months, even 
though it may be completely unnecessary, just in case? Saving 
money by not testing in my case may well have cost the VA 
another $7,500.
    To summarize, I have found the following things to be true 
during the past 6 years of dealing with my hepatitis C and the 
VA health care system: I truly believe that had I not been the 
proverbial squeaky wheel, the VA would still have done nothing 
to followup my hepatitis C condition.
    The VA diagnosed me with hepatitis C in 1994. To this day, 
however, I have no concrete evidence as to how much hepatitis C 
has destroyed my liver. I really want to know what shape my 
liver is in.
    My local VA hospital and the Seattle VA hospital lulled me 
into a false sense of security about hepatitis C for almost 5 
years.
    I am deeply concerned about access to hepatitis C care, or 
the lack thereof, at my local VA hospital. According to Spokane 
VA hospital staff who do not wish to be named, more than 60 
hepatitis C-positive veterans are waiting for their first 
appointment with a GI doctor, but only 3 veterans, including 
myself, are currently being treated at that hospital for 
hepatitis C. There are currently about 250 people waiting for 
appointments in the GI clinic. From January to the end of May 
2000, only one doctor worked 2 days a week seeing all of the 
hepatitis C and GI patients, and then only in the afternoon. 
For the entire month of June no hepatitis C doctor was on 
staff. Now there is another temporary replacement doctor but 
only for the next 2 months. I cannot be certain, but I have 
spoken to other veterans who say this is the typical situation 
at their VA hospitals too.
    The VA may be moving in the right direction but things 
could be much better. How many veterans have lost their lives 
because the VA told them not to worry, hepatitis C is not a big 
thing. How many of my brothers and sisters are in end-stage 
liver disease because the Veterans Administration has dropped 
the ball, never followed up on their hepatitis C conditions, or 
tested them in the first place, or counselled them on how 
important it is to refrain from alcohol and drug use because of 
their hepatitis C.
    I read somewhere that complacency is hepatitis C's best 
friend. That is precisely what the VA cannot be--complacent. 
Veterans need full-time doctors focused on just hepatitis C in 
every VA hospital in the country. Veterans need a consistent 
plan of treatment for hepatitis C so that no matter where a 
veteran goes for treatment they will get the same high quality 
care for hepatitis C.
    I wish to thank the members of this committee for inviting 
me to speak about my personal experiences regarding hepatitis C 
and the VA. I also want to thank Congressman Nethercutt and 
Senator Murray for answering my letters regarding this matter, 
especially Congressman Nethercutt for contacting the Spokane VA 
to find out for himself what was going on.
    [The prepared statement of Mr. Bryant follows:]

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    Mr. Shays. Thank you, Mr. Bryant.
    Mr. Lesinski.

        STATEMENT OF MARTIN P. LESINSKI, VIETNAM VETERAN

    Mr. Lesinski. Thank you, Chairman Shays and members of the 
subcommittee. My name is Martin Lesinski. Thank you for this 
opportunity to speak of my personal experiences with hepatitis 
C. I hope my testimony will be of benefit not only to fellow 
disabled veterans, but also to the honorable Congressmen who 
play so principal a role in determining the quality of their 
lives. Following my testimony, I welcome your questions and 
concerns.
    I am a disabled veteran of the Vietnam war. My service-
connected disabilities include hepatitis C. I served as an Army 
infantry sergeant in Vietnam from the fall of 1970 until being 
wounded near the end of February 1971. I stepped on a booby 
trap, received multiple fragment wounds which required several 
blood transfusions, both in-country in Vietnam and also later 
in the Philippines. At my annual VA blood draw in March 1998, 
my liver function tested abnormal. A followup test for 
hepatitis C revealed I was positive. Until hearing this 
diagnosis, I was essentially unaware of hepatitis C, its 
causes, and its potentially fatal consequences.
    As a veteran, one returns from war either dead or alive; 
and if fortunate to be alive, either wounded or not. Here's the 
thing, if you are wounded, you made it home alive, you know the 
extent of your injuries, your disabilities, and there is no 
further risk of death. Well, that is what I thought before this 
diagnosis. It was a shock. After nearly 30 years of living with 
my service-connected disabilities, suddenly there is a new 
consequence of my service--hepatitis C, and this one can kill 
me. It really took some adjusting.
    In June 1998, I was referred to the Liver Clinic at the San 
Francisco VA Medical Center and came under the care of Dr. 
Teresa Wright. A liver biopsy was performed. My liver was 
enlarged and early stage scarring had occurred and was 
continuing. I was experiencing increasing fatigue and weakness.
    At this point my situation got complicated and challenging. 
My hepatitis C was severe enough that I required treatment. I 
was screened for admission into a research study program being 
conducted by Dr. Wright through the VA. Unfortunately, given 
the extent of my PTSD, for which I am 70 percent service-
connected, I was rejected. Great disappointment. What to do and 
how to obtain treatment?
    Fortunately, during this process the FDA approved 
combination therapy for naive patients. But even more 
fortunately for myself, I reside in San Francisco, one of the 
two Hepatitis C Centers of Excellence, and where Dr. Wright was 
able to make treatment available to me.
    In February 1999, I began combination therapy, continuing 
through August. The treatment was extremely debilitating. It is 
disheartening to be 6'4'', 200 plus pounds and unable to climb 
a single set of stairs without resting mid-flight. There were 
weeks when I just could not get out of bed except to go to the 
bathroom. It was November 1999 before my blood counts returned 
to normal. Six months after the completion of treatment I was 
virus free and my liver functions normal. Quite simply, I have 
gotten my life back. I am the fortunate one. I have returned to 
my base line disabilities, the non-fatal ones.
    Mine is a success case in the treatment of hepatitis C. 
Unfortunately, I have also learned that simply obtaining 
hepatitis C treatment from the VA can in itself be considered a 
success. It should not be. Think about it--2 years after being 
diagnosed with a debilitating disease, I am testing virus free. 
I know that had it not been for several key factors falling 
into place at the right time, I would not be here before you 
with my hepatitis C currently in remission. A number of factors 
converged--annual blood testing necessitated by my other combat 
injuries which detected my liver problems, living in San 
Francisco VA region where hepatitis C treatment is available, 
coming under the excellent care of Dr. Teresa Wright, a broad 
support team during my treatment, and believe me, the prayers 
of many.
    However, I should not be the only fortunate one. I believe 
screening and treatment for hepatitis C should be uniformly 
available throughout all VA medical centers, and readily 
available to all veterans exposed to any risk factors 
associated with their military service. Until hepatitis C is 
viewed as a disease that affects all veterans, Congress will 
continue to witness and veterans will continue to experience 
this disparate level of care for hepatitis C within the VA's 
regions.
    This disease is not only destructive, but asymptomatic, 
often stealth-like until far advanced. Such a disease requires 
a broad and uniform access to screening for the entire veteran 
community. Hepatitis C is a silent killer. Only in looking back 
after my hepatitis C diagnosis did it become apparent to me 
that the fatigue and abdominal discomfort I was experiencing 
was the result of a fatal virus, and not simply the demands and 
stress of my daily job. How many other veterans are unknowingly 
enduring these symptoms, carrying this additional burden daily 
for having answered their country's call?
    Veterans are not just fellow Americans. We are the sons and 
brothers, the daughters and sisters in families across America. 
No matter the individual circumstances, we answered our 
country's call at a time when the options not to step forward 
were more numerous, more available, and more broadly supported 
than ever before. As young men and women, we put on the 
uniforms and shouldered the responsibilities of soldiers, 
sailors, airmen, and marines. Twenty-five years after the end 
of the Vietnam war America's veterans, America's sons and 
daughters continue to pay the physical and psychological costs 
of their service.
    I ask you honorable Congressmen and your colleagues to 
provide the necessary oversight and resources for a consistent 
and comprehensive hepatitis C treatment program for all of 
America's veterans, not just those veterans lucky enough to be 
living in select VA regions, but for all veterans across 
America. It is particularly painful for us to be denied medical 
treatment in this time of surplus.
    I want to thank this committee and you, Chairman Shays, for 
your attention to this critical issue. I applaud this 
committee's oversight to ensure that veterans receive quality 
access, testing, and treatment for hepatitis C. This I ask of 
you: May not just the fortunate ones, but all veterans be 
provided unwavering screening and treatment for hepatitis C 
throughout the VA health care system. Please grant all veterans 
the opportunity to live their lives to their full potential. 
Thank you.
    [The prepared statement of Mr. Lesinski follows:]

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    Mr. Shays. Thank you, Mr. Lesinski.
    We will begin with Mr. Tierney, Mr. Allen, and Mr. Snyder, 
and then I will ask some questions.
    Mr. Tierney. Thank you, Mr. Chairman.
    Gentlemen, I am very concerned about the complacency issue 
here, the aspect that it is your worst enemy if you have 
hepatitis C. I note the committee took a review of some of the 
veterans agents in my district and some of the clinics up 
there, and what we noted, from the agents at least, is they do 
not see much in terms of outreach, particularly from the VISNs. 
They might catch a letter occasionally from the Armed Services 
newsletters or whatever.
    What would your respective recommendations be as a way to 
reach out to veterans and to let them know about the wisdom of 
having a test, the need for it, and so on down the line on 
that. I will start with you, Mr. Baker.
    Mr. Baker. We gave those suggestions the last time we were 
here, which is simple posters and brochures, which the VA told 
us they were going to do. To date, we still have not seen a 
brochure or a poster. Like I said, my mere office, I have 
posters and brochures here that we send out all across the 
country to different clinics and different VA physicians asked 
us for them.
    Mr. Tierney. Mr. Bryant.
    Mr. Bryant. I do not know that I have an answer for you. In 
the last few months, I have seen a few pamphlets at my VA 
hospital. I feel like the gentleman on my left, I feel like one 
of the lucky ones. I just happened to be in the right place at 
the right time and asked the right questions. Otherwise, I 
think I would still be sitting there complacent if I had not, 
for my own reasons, gone on the Internet and found the 
information myself.
    Mr. Tierney. There is nothing that the Veterans 
Administration had done that prompted you to do that?
    Mr. Bryant. No. I have been a service-connected disabled 
veteran, or at least partially so, since 1974. I have received 
on other matters better treatment in the VA than I think I got 
in civilian hospitals for various things. And up until this 
hepatitis C thing, I would never have been here to say anything 
bad about the VA because I felt almost like royalty. I was 
treated well for things that were not even service-connected. I 
ran out of money after a motorcycle accident and they took care 
of my leg. But I feel like there was a brick wall on this. So I 
am sorry, sir, I do not have an answer for you.
    Mr. Tierney. OK. Thank you.
    Mr. Lesinski.
    Mr. Lesinski. Excuse me, Mr. Tierney, I did not quite hear 
your question.
    Mr. Tierney. It was for suggestions as to what could be 
done specifically in terms of better outreach. I take it that 
you did not get prompted to have your tests because you heard 
anything in particular from the Veterans Administration or 
clinics or hospitals.
    Mr. Lesinski. No, it actually came up in the course of 
normal annual blood work for other service-connected. I think 
the heart of the matter really is within the VA and the fact I 
realize how extremely fortunate I am in being in San Francisco, 
that it just fell into place. I just feel that the VA should 
have this in place everywhere. We should not have to be doing 
additional outreach to say to veterans, hey, you might be a 
problem here. We should just be checking them.
    Mr. Tierney. Thank you. I note that in my district at least 
they do check in all of the clinics and the hospitals. If that 
is not the case nationwide or whatever that they check, then we 
are fortunate to have Dr. Ignello down at the Bedford facility 
who runs the hepatitis C clinic and basically does followup on 
that if somebody tests positive. The one thing he does talk 
very carefully about is the recommendation that testing be done 
very early. It is asymptomatic early on and that the longer you 
wait the more likely you are to have serious liver damage, and 
also the prospect of warning them against alcohol and things of 
that nature if they are subject to having this situation.
    So I would suspect we will probably want to have some 
questions for the Veterans Administration about the depth of 
their testing and why it is not done everywhere, and what they 
can do about following up on that.
    Mr. Baker, you want to add something?
    Mr. Baker. That is why we suggest and we feel it should be 
a one VA on this issue. Like you are saying, where you are 
there is outreach and they are testing. There are facilities 
across the country that are so inconsistent with everybody 
else's policies, the guys just do not even know what is going 
on. There is not random testing in every facility. And even 
after the facilities do test, some of them still tell the guys 
to go home and they will have a notice that they will have a 
clinic in 6 months. Some of these veterans do not have time for 
6 months. So the VA has to be consistent with their policy 
everywhere, and they are not.
    Mr. Tierney. Thank you. Thank you, Mr. Chairman.
    Mr. Lesinski. If I might add something to Mr. Tierney's 
question. Perhaps one place for them to start in terms of 
concrete things to be done, since we know the blood supply was 
not really cleaned up until about 1990-1991, they could easily 
go through their records and send a letter to anyone who has 
received any kind of blood work or blood transfusions through 
their system up until that time to come in and do testing and 
be screened. I am sure they have that data base. I know it 
would incur great numbers, but that alone would identify 
everything.
    Mr. Tierney. Thank you.
    I yield back, Mr. Chairman.
    Mr. Shays. Mr. Allen.
    Mr. Allen. Thank you, Mr. Chairman.
    Mr. Baker, in your testimony you say that you found the 
VA's approach to treatment was to treat only those veterans who 
had high liver enzyme levels or those who have symptomatic 
liver disease. I am wondering if you are suggesting that the 
treatment guidelines for the VA should be modified, and, if so, 
how they should be modified.
    Mr. Baker. They definitely should be modified. Some 
facilities, even the facility that I am at, if you do not have 
high liver enzyme levels, you are not going to go any further. 
The data shows, and I gave it to the committee, that in 30 
percent of the cases there is no liver enzyme elevation, so 
these fellows just continue to go on. I have an instance in my 
own facility like the one in Montana--liver damage, slighted 
elevated enzyme levels, they told him to go home, nothing to 
worry about.
    They need to change their guidelines. They need to be 
consistent with the other leading hepatologists across the 
country that are not within the VA system. What it shows us is 
that they are only taking the sickest ones so they can get the 
$40,000 that complex care patients get. The bottom line, we all 
know, is dollars and cents sometimes with a lot of these 
people. There are good people in the VA; I work with them. But 
something is wrong in this picture with hepatitis C. Those 
veterans are not out there getting treated properly.
    Mr. Allen. How often does the issue of whether the 
condition is service-connected or not arise with veterans in 
your case?
    Mr. Baker. In my case, because I am a service officer, it 
arises every time I talk to a veteran with hepatitis C. I want 
to know what his risk factors are and if he knows what his risk 
factors are. There are a lot of veterans out there that cannot 
find a risk factor, but there are others, like we said, combat 
veterans with no transfusions, some were wounded, some not, but 
we know in a combat scene everybody has got something.
    Mr. Allen. Mr. Snyder has some legislation that he can talk 
about but that would be helpful.
    I yield back. Thank you, Mr. Chairman.
    Mr. Shays. Thank you.
    Mr. Snyder, you have the floor.
    Mr. Snyder. Thank you, Mr. Chairman.
    Mr. Bryant, in your testimony you make mention of having 
had several units of blood during a surgery and that, in the 
opinion of some, is where they think was your most likely point 
of infection with hepatitis C. Of course, there are a lot of 
good reasons for that. But you also make the point that it is 
impossible for us ever to know for sure. I think that is the 
challenge that so many of our veterans have, is this is like 
the game of Clue but you never know the answer. There is a 
point in time at which infected veterans received that virus. 
We can play odds and say it must have been during that 
transfusion, but the reality is it is very difficult because of 
our state of knowledge up until 10 years ago or so to know when 
that point in time was. I appreciated your candor about the 
fact that you are not really sure when you got it either.
    I want to ask a little broader question than Mr. Tierney 
did. For each of you, if you were the new Secretary of Veterans 
Affairs, or a member of this committee or the Veterans 
Committee, what would be your No. 1 specific priority in this 
whole area of hepatitis C and the VA?
    Mr. Baker. My No. 1 priority would be to just get the word 
out to every veteran that they need to be tested. Whether they 
get tested through their local insurance that they have, or 
come into a VA. We have an epidemic here and the first thing is 
to identify who has it and who does not.
    From there, we straighten up our guidelines properly to 
coincide with what the regular population is doing, and we 
treat these people so that they do not become symptomatic to 
when they are in the hospitals and it is costing the Department 
of Veterans Affairs and the taxpayers thousands and thousands 
of dollars to take care of these guys. Myself, I got treated in 
time. I am OK. The other fellows here, we have been treated in 
time. But we are the fortunate ones. So we need to get the word 
out first. And that was supposed to have been done.
    Mr. Snyder. Mr. Bryant.
    Mr. Bryant. I want to go back to something that you said 
about where we might have gotten it. I believe personally that 
I probably contracted it in boot camp with either air gun shots 
or a gamma globulin shot. But that does not really matter to me 
now. But there are people out there, and I look at the rest of 
my life other than my military service and the fact that I was 
in a VA hospital for surgery for a service-connected-related 
disability, and they tell me that is the most possible place, 
but how many people just like me went to boot camp, got a few 
shots. I worked in an air conditioned shop on board a carrier 
fixing bombing and navigation computers for the A-6. I got out 
and went home and was fortunate enough to have gone back in the 
service when I came down with ulcerative colitis. So there was 
no doubt that I had a direct link to it. But how many of my 
brothers and sisters went in, did their time, did not have any 
known risk factors, but they have hepatitis C. They went out 
and behaved themselves, they did not do drugs, they did not 
drink alcohol, they did not do any of the other things they 
said are risk factors. But they are going to die of hepatitis C 
all the same.
    Mr. Snyder. Thank you.
    Mr. Lesinski, do you have a specific No. 1 priority?
    Mr. Lesinski. Yes, Congressman Snyder. I would make the 
first priority uniform screening and testing. It has just got 
to happen. We cannot let the unlucky ones go.
    Second, I would broaden, as you spoke to earlier, and Jim 
Bryant just spoke to, the risk factors and exposure points. 
Mine was a clear-cut case where I had blood transfusions. I had 
been exposed to blood on the battlefield. I had no other risk 
factors. But it should be uniform screening and testing as the 
No. 1 priority, and under that, to broaden it. If someone is 
exposed to any of the risk factors, they should be brought in 
for screening.
    Mr. Snyder. Thank you. Thank you, Mr. Chairman.
    Mr. Shays. Thank you, gentlemen.
    The value of your testimony it seems to me is to now have 
the VA respond to it. I think your testimony and the questions 
that have been asked make it very clear that the protocol that 
we have is not really being followed. I guess I want to ask 
each of you why you think we need to have two hospitals that 
specialize in hepatitis C care when we do not have our veterans 
who have hepatitis C just in those areas.
    I will start with you, Mr. Baker.
    Mr. Baker. First of all, I think there should be more than 
two Excellence Centers if they are going to lead the way in how 
the VA treats their veterans with hepatitis C. But again it 
comes down to uniformity within the VA. One facility does one 
thing, another one does another. It is just so scattered. If we 
are going to have Excellence Centers, and I visited Dr. Ho's 
Excellence Center as well, he is doing an excellent job up 
there, but nobody even follows what he is doing. Everybody is 
on a different page.
    The VA needs to get on the same page. I do not know what is 
so hard about getting on the same page and all of them 
following the criteria that is out there. Leading hepatologists 
in the world have shown the VA what criteria to follow and they 
choose to follow their own. Do not understand that. But I know 
that they need to be on the same page, all these facilities. 
Let's make them all Centers of Excellence, because if they are 
all on the same page they are all doing the right thing.
    Mr. Shays. Mr. Bryant.
    Mr. Bryant. I think I have to echo both of these 
gentlemen's words. I am not nearly as eloquent. I can only 
reiterate that I do not think that the VA would have treated me 
had I not stepped up and said here I am and I need treatment. I 
have a son in the military now and he has yet to be tested for 
hepatitis C. I know people in different parts of the country, 
only because I talk to them on the computer, who not only had 
no outreach from the VA, but they cannot even get service-
connected because they have to wait 2 years for an appointment 
to be service-connected. But they are going to die before their 
appointment comes up because they cannot get treatment for 
something that I think every one of us in this room, or at 
least from here forward, knows is service-connected. That may 
not be quite the answer to your question, but it was what was 
on my mind.
    Mr. Shays. Thank you.
    Mr. Lesinski.
    Mr. Lesinski. Simply make every region a Center of 
Excellence. That is all we need to do. It is easy.
    Mr. Shays. Again, your testimony is very powerful. If what 
you have encountered is indicative of the problem other 
veterans encounter, it is a strong indictment that the protocol 
is just not being practiced.
    Yes, sir?
    Mr. Baker. I would just like to add one thing, and Miss 
French brought this up, and that is the issue of the funds and 
how the VA Central Office has sent it down to their VISNs. I 
was at the Miami facility as well when they told us that they 
did not have the money. We had corresponded with VA at an 
earlier date about that and had been told that more money was 
sent. We need to make these VISN directors accountable for this 
money that is designated for hepatitis C. That $350 million 
that was supposed to go to help toward that has gone to a lot 
of other places, and we know that. So we need to really make 
them accountable and somehow designate that this money is 
exactly for that purpose, not for parking lots, not for a bunch 
of people to go to different places in the country to 
supposedly take care of certain issues.
    Mr. Shays. Any other comments any of you would like to add?
    Mr. Bryant. Yes, sir. I have not been involved in this 
nearly as long as any of these other people here. I have never 
met them before the last day or so. But everything that they 
said about lack of treatment, lack of outreach I have found 
true in my own life and with people whom I have talked to.
    My VA hospital chooses not to do liver biopsies, until the 
last month or so they chose not to do viral load testing or 
genotyping. I think, pardon my French, but it is going to come 
back and bite them in the butt because now they are going to 
find out that the little things that they did not do before are 
going to end up costing them more money. I have got to do 6 
more months of treatment that I do not want to do because they 
cannot tell me whether I should stop or not.
    Mr. Shays. Mr. Lesinski, we are going to have three 
recorded votes, but go ahead.
    Mr. Lesinski. Chairman Shays, two things very quickly. One 
is, they do know how to do it right. I am sitting here because 
they do know how to do it right. They can do it right. They 
need to do it right uniformly. And second, the other thing I 
would like to say in closing, is once again I would like to 
applaud this committee for your efforts and oversight in 
assuring that veterans get the resources they need to live to 
their full potential. Thank you, gentlemen.
    Mr. Shays. Thank you. I just would use that as an occasion 
to say that we first became aware of this problem when we had a 
hearing on the safety of the blood supply. We were looking at 
the HIV/AIDS virus and in there was just an off-handed comment 
that 300,000 people had become infected with hepatitis C and 
that a good chunk of them were veterans. And that is kind of 
how we learned of it and that is how we began to followup. It 
is an extraordinarily important issue, and I appreciate all 
three of you willing to be here and testify. Thank you very 
much, gentlemen.
    I think we will try to get in at least the first testimony 
of the next panel. So if we could call our next panel, which 
will be Dr. Thomas V. Holohan, Chief of Patient Care Services 
Officer, Veterans Health Administration; Dr. Samuel B. Ho, 
staff physician, Minneapolis VA Medical Center; Dr. Norbert 
Brau, staff physician, Bronx VA Medical Center; and Dr. Frank 
Iber, Hepatologist, a volunteer at Hines VA Medical Center, 
Hines, IL.
    Thank you, gentlemen. We will swear you in. If you would 
raise your right hands, please.
    [Witnesses sworn.]
    Mr. Shays. Thank you. Note for the record that all 
witnesses responded in the affirmative.
    We will start with you, Dr. Holohan. I think we will hear 
your testimony and then we will break for the vote and come 
back.
    Let me state again for the record there is a protocol that 
usually has the executive branch go first. We appreciate your 
willingness to listen to the witnesses. That way we will not 
have to ask some of the questions and then have to bring you 
back up afterwards. So it serves our purpose well and I hope 
yours, too. So thank you very much for your cooperation.
    Dr. Holohan, you have the floor.

 STATEMENT OF DR. THOMAS V. HOLOHAN, M.D., CHIEF, PATIENT CARE 
 SERVICES OFFICER, VETERANS HEALTH ADMINISTRATION, ACCOMPANIED 
   BY JIMMY NORRIS, CHIEF FINANCIAL OFFICER, VETERANS HEALTH 
                         ADMINISTRATION

    Dr. Holohan. Thank you, sir. Let me begin by making a 
personal comment. I am a Vietnam-era veteran, 70 percent 
service-connected. I thought that was an important statement to 
make given the tenor of the testimony we are hearing.
    VA has already submitted written testimony for the record. 
What I would like to do at this time, Mr. Chairman, is to 
briefly summarize some of that information and then address the 
additional questions that were submitted by your staff on July 
7th.
    Since our last testimony to this subcommittee in June 1999, 
we have achieved a number of goals in our attempts to establish 
a national system-wide and an evidence-based approach to this 
disease.
    We have established the Emerging Pathogens Registry as our 
primary mechanism for tracking both hepatitis C testing and 
those individual patients who have been shown to have the 
disease. This Registry uses an automated computer program that 
forwards the information to a central data base. We have 
reviewed and updated our treatment guidelines, and have put in 
place a risk assessment reminder system to improve our 
diagnostic capabilities.
    Our Centers of Excellence in Miami and San Francisco have 
developed educational materials and counseling guidelines for 
patients and practitioners. They are participating in and 
monitoring a number of investigations, including VA studies of 
hepatitis C prevalence, an industry-sponsored study of 
treatment outcomes of combined therapy in veteran patients, and 
clinical studies of new drugs.
    VA has developed cooperative outreach programs with 
Veterans Service Organizations, and private groups such as the 
American Liver Foundation, and the Hepatitis Foundation 
International. We are currently in the planning stages of the 
mailing of 4 million brochures, one to each enrolled veteran in 
VA.
    The Acting Under Secretary for Health has released an 
additional $20 million in reserve funds this fiscal year for 
hepatitis C initiatives. The amount provided each Network is 
proportional to their current fiscal year expenditures for this 
disease. In fiscal year 2001, we intend that the VERA funding 
will include recognition of the costs and the distribution of 
hepatitis C throughout VA and further adjustments will be made 
appropriately.
    VA has also established a Web site that provides 
educational materials, guidelines, and information that has 
been presented at our various national clinical and counseling 
symposia.
    Now, Mr. Chairman, with respect to the additional 
information sought by your staff, I will address those specific 
issues of interest.
    From fiscal year 1998 throughout the first half of fiscal 
year 2000, approximately 325,000 veteran patients have been 
tested for hepatitis C. Approximately 65,000 have been found to 
be positive for those antibodies; that is about 20 percent of 
those tested.
    You also asked about the number of veteran patients with 
hepatitis C who have received or are receiving treatment. This 
is difficult to determine precisely because there is no single 
data base that lists unique patients and drug treatment that is 
specific for hepatitis C. The Pharmacy data base can identify 
from June 1999 individual patients on Rebetron or combined 
interferon/ribavirin, and hepatitis C is the only indication 
for that product. However, another treatment alternative is 
interferon alfa, and that drug is used to treat a number of 
diseases in addition to hepatitis C, for example, chronic 
myelogenous leukemia.
    So in order to determine the total number of hepatitis C 
patients on either Rebetron or interferon alfa, we will have to 
compare patient lists by social security number across the 
pharmacy data base and the Emerging Pathogens Registry. This 
work is currently underway but is not yet completed. However, 
we do know, on the basis of these two data bases, the mean 
number of new patients started on Rebetron each month 
approximates 14 percent of the mean number of newly diagnosed 
hepatitis c patients each month, as reported in the Registry.
    You asked what percentage of veterans with hepatitis C are 
eligible or appropriate for drug therapy. This is a question 
which we have been quite interested in, as you may imagine. The 
original estimates of our VA experts in liver disease were that 
about 20 percent of our patients would be eligible. Their 
estimates were based upon the observation that there are a 
number of absolute or relative contraindications to such 
therapy. The benefits, for example, often do not outweigh the 
risks for those with very mild liver disease or for advanced 
liver disease. Other contraindications include age greater than 
60, significant extrahepatic disease, depression, autoimmune 
diseases, uncontrolled diabetes, moderate to severe anemia or 
low white cell or platelet counts, pregnancy or refusal to use 
contraception. The possibility of poor compliance with complex 
regimens must be considered. And finally, it is widely believed 
that ongoing alcohol or illicit drug use is an absolute 
indication.
    As I have noted above, we have evidence that on average the 
number of new patients started on Rebetron each month 
represents about 14 percent of the total number of newly 
diagnosed patients each month. In addition, the San Francisco 
Center of Excellence has obtained risk factor and treatment 
candidacy information on veteran patients with hepatitis C at 
26 medical centers across the country. Approximately 15 percent 
of the patients sampled were on treatment.
    So we believe that when additional data are available in 
larger samples and the patients on interferon alfa alone are 
added to those on combination therapy the original 20 percent 
estimate will prove to have been reasonably close to the actual 
treatment rates that we are observing.
    You asked when the direct comparisons of the Emerging 
Pathogens Registry and the Pharmacy data base would be 
complete. As stated, we have performed an initial match, but 
the two sources do not reflect the same period of time. We will 
attempt to select our patients from the same time interval in 
the two data bases. However, reducing the figures to a monthly 
average and comparing hepatitis C-positive patients with 
patients on treatment, an approach we have described above, the 
data suggests that the proportion on treatment with Rebetron, 
interferon alfa alone, or interferon alfa plus ribavirin is 
approximately 16 percent.
    Mr. Shays. I am sorry, Dr. Holohan, we are going to have to 
go vote. We have three votes and you gentlemen need to get on 
your way. I do not know if you want to quickly get a bite to 
eat or something and we would come back in about 20 minutes.
    Dr. Holohan. Twenty minutes?
    Mr. Shays. If we could be here at five after.
    [Recess.]
    Mr. Shays. Gentlemen, sorry to keep you waiting. I 
underestimated the time it would take to do three votes.
    Dr. Holohan, if you would like to continue your statement. 
Thank you, and sorry to interrupt you.
    Dr. Holohan. Thank you, Mr. Chairman. I am not going to 
repeat what I have said except to again emphasize the numbers. 
We talked about the numbers that have been tested and that 
about 20 percent of the 325,000 tested have been positive. We 
talked about different mechanisms for looking at the data we 
have available to us about the percentage of positive patients 
who are treated, and those three different methodologies return 
14, 15, and 16 percent respectively, which we believe is very 
similar to the predictions that some of our VA liver experts 
made several years ago about 20 percent of veteran patients who 
are positive being appropriate candidates for treatment.
    The final statement, related to a question that your staff 
posed, was how the hepatitis C assessment reminder would be 
used, I think the phrase they used was ``clinical reminder,'' 
and when it would be implemented. The way this system operates 
is that when a VA practitioner selects a patient's record for 
display, there is a computer program that automates the process 
of detecting and then excluding patients who have already been 
tested, whether they have positive or negative results, and it 
also excludes patients whose records indicate an established 
diagnosis of hepatitis C based on ICD-9 codes. So the clinician 
then knows whether the patient in question has already been 
tested, has an established diagnosis, or needs to be assessed 
for risk factors. If the latter situation obtains, presumably 
assessment then would be initiated.
    The earliest version of this program was released to all 
sites in March of this year, 2000. The Information Office has 
informed us that an enhanced reminder program was distributed 
in June of this year. I believe the VA clinicians testifying 
here today will endorse the effectiveness of this assessment 
clinical reminder. And software currently under development 
will collect and provide more comprehensive data that will 
include other laboratory results, medication usage, and 
information related to status with regard to hepatitis A and 
hepatitis B for issues of coinfection.
    That concludes my oral testimony, Mr. Chairman. I am 
pleased to answer any questions.
    [The prepared statement of Dr. Holohan follows:]

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    Mr. Shays. Thank you, Dr. Holohan.
    We will now go to Dr. Ho.

     STATEMENT OF DR. SAMUEL B. HO, M.D., STAFF PHYSICIAN, 
                 MINNEAPOLIS VA MEDICAL CENTER

    Dr. Ho. Chairman Shays and members of the committee, thank 
you for this invitation to speak regarding hepatitis C: access, 
testing, and treatment. I have been the supervising 
gastroenterologist for the hepatitis C clinic at the 
Minneapolis VA Medical Center for the past 10 years. I have 
worked closely with our administrators in our Veterans 
Integrated Service Network [VISN 13] over the last 3 years to 
develop a comprehensive health care product line for hepatitis 
C diagnosis and treatment. Over that period of time, I have 
learned much from my patients with hepatitis C, and I 
appreciate the comments of Mr. Baker, Mr. Bryant, and Mr. 
Lesinski. I would like to tell you about my experience with one 
patient because it illustrates the challenges and opportunities 
that we face.
    Mr. B was referred to our clinic 2 years ago because he was 
diagnosed with hepatitis C through his primary care clinic. He 
had served in the Army and was stationed in South Vietnam in 
1971. He was hit during a rocket attack, which blew off his 
left lower leg and partially destroyed his right calf. He was 
most likely infected with hepatitis C after receiving a blood 
transfusion during surgery when they had to amputate his left 
leg.
    He never experienced symptoms from hepatitis C until 3 
years ago, 26 years after being infected. The symptom that he 
developed was incapacitating fatigue, and he was found to have 
cirrhosis, or severe scarring of the liver, after undergoing a 
liver biopsy.
    We treated him with a new treatment, a combination of two 
drugs, interferon and ribavirin, which was available to us at 
that time only on an experimental basis. This drug therapy 
lasted 1 year and required visits to our clinic every 2 to 4 
weeks for blood test monitoring. The treatment, as the others 
have testified, was not easy for him. He developed severe 
headaches and worsening phantom leg pain requiring narcotics. 
He also experienced a worsening of his previous depression 
problem, which required additional therapy from our 
psychiatrists. He was, however, able to finish 1 year of 
therapy. Since then, I am happy to say, he has had normal liver 
enzyme tests and all tests for hepatitis C virus have been 
negative. We consider him to be cured from this infection.
    He feels much better and tells me he has been out golfing 
quite frequently now. Recent publications indicate that his 
cirrhosis may actually start regressing, and that his risks for 
the need of a liver transplant and/or treatment for liver 
cancer are markedly reduced.
    This patient I believe is typical of our patients. One, he 
was a Vietnam veteran who has carried the virus for 25 to 30 
years and typically was without symptoms until he developed 
severe liver disease. This has largely been the reason why many 
of these patients have gone unrecognized until relatively 
recently. Of the last 200 liver biopsies we have done at our 
institution on veterans referred for hepatitis C treatment, we 
have found that 33 percent had pre-cirrhosis or cirrhosis, 
which I believe is a greater degree of severity than others are 
finding in the general population of hepatitis C. Third, he had 
a pre-existing, psychiatric diagnosis. Again, in our last 200 
patients referred for treatment, we found that 50 percent of 
our patients with hepatitis C experienced greater problems and 
need more care in order to get them through the hepatitis C 
treatment, and 50 percent have these established psychiatric 
diagnoses that make their treatment much more complicated. 
Last, he illustrates the fact that within the last 2 years we 
have had improved therapies for hepatitis C and that it appears 
that we can cure 40 percent of patients who are able to receive 
this therapy.
    Mr. Chairman, we realized that, due to the long duration of 
infection in most of our patients and their current burden of 
disease, we had a narrowing window of opportunity to identify 
and treat our patients before it was too late. Further 
improvements in hepatitis C therapies that are becoming 
apparent on the horizon have been compelling us with an 
increasing degree of urgency to find and treat as many of these 
patients as possible. We were convinced that a greater 
investment in resources now would help us reduce the tragedy 
and expense of complications of end-stage liver disease due to 
hepatitis C that we face over the next two decades. I was 
pleased that the administration of the VA health care system 
here in Washington has provided such strong leadership on these 
issues and has come to these same conclusions over the last 2 
years that I did in my institution.
    The VA Upper Midwest Health Care Network (VISN 13) consists 
of six medical facilities serving approximately 97,000 patients 
in portions of seven States. There is one tertiary care medical 
center located in Minneapolis. Our initial screening study 
indicated that we may have as many as 5,000 patients with 
hepatitis C in our VISN patient population. Again, over the 
last 2 years, we have worked to try and address many of the 
issues that have been brought up today in establishing a VISN-
wide program for the diagnosis and management of these 
obviously complex patients.
    To summarize, the five key elements of the plan that we 
have come up with include: One, to initiate standard hepatitis 
C screening procedures for all primary care and specialty care 
clinics. We have been assisted in this by the automated 
``clinical reminder'' system, that Dr. Holohan just mentioned, 
for identifying and recording patients who need hepatitis C 
screening. Since our system began last February, we have been 
screening 1,143 patients per month.
    Two, for hepatitis C-positive patients, we have standard 
education, evaluation, and referral protocols performed by 
personnel in primary care clinics or by the hepatitis clinic.
    Three, we have a centralized VISN 13 Chronic Hepatitis C 
Clinic in Minneapolis to provide specialty care by 
gastroenterologists and infectious disease physicians to 
evaluate eligible patients and initiate treatment according to 
the VA treatment guidelines. Again, since how we understand 
hepatitis C and its treatment is continually changing, the role 
of specialists will continue to be important in guiding what we 
do for these patients.
    Four, we are establishing hepatitis care teams at each VISN 
medical center to provide hepatitis C chemotherapies and assist 
in all aspects of screening and diagnosis.
    Five, we have a centralized outcome monitoring system and 
coordination of patients being offered treatment using 
investigational protocols. Ongoing research at VA medical 
centers continues to be critical for improving therapies for 
patients with hepatitis C and many other diseases.
    The details of this plan have been published in the 
Veterans Health System Journal, and more details are outlined 
in my written statement.
    In my experience, the most important element of this plan 
is the establishment of a hepatitis C care team at each medical 
center. And the most important part of this team is a full-time 
nurse level position which would be responsible for 
coordination of screening tests, patient notification, patient 
education, and patient monitoring during therapy. Again, we 
have found it very important to involve a psychologist or 
psychiatrist at each medical center, since 50 percent of our 
patients with hepatitis C have established psychiatric 
diagnoses such as post-traumatic stress disorder or depression.
    Mr. Chairman, this really is a new disease for the VA with 
new and expensive treatments that are difficult to administer. 
I believe that the key elements outlined above will provide the 
foundation for VISN 13 to provide quality care for veteran 
patients with hepatitis C and I hope may serve as a model for 
other VISNs in the VA health care system.
    Thank you very much for this opportunity to testify.
    [The prepared statement of Dr. Ho follows:]

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    Mr. Shays. Thank you, Dr. Ho.
    Dr. Brau.

STATEMENT OF DR. NORBERT BRAU, M.D., STAFF PHYSICIAN, BRONX VA 
                         MEDICAL CENTER

    Dr. Brau. Mr. Chairman, members of the subcommittee, I 
would like to thank you for inviting me to speak before the 
subcommittee on how VISN Network 3 meets the challenge of 
hepatitis C. I am an infectious disease physician at the Bronx 
VA medical center where I am also the director of the Viral 
Hepatitis Clinic, and I am the founder and co-chair of the VISN 
3 Hepatitis C Task Force.
    As you all know, infection with hepatitis C virus [HCV] 
does become chronic in 75 percent of infected individuals, and 
chronic hepatitis C can lead to liver cirrhosis and liver 
cancer. Today, it is the most common cause for liver 
transplantation in this country. Combination therapy with 
interferon and ribavirin can cure the chronic infection and 
then the liver disease in about 38 percent of the patients.
    U.S. veterans are much more commonly afflicted with 
hepatitis C than the general population. A VA-wide study from 
March 1999 revealed that 6.6 percent of U.S. veterans have been 
infected compared to 1.8 percent of the general population. The 
prevalence is much higher in networks with a large number of 
urban centers, like the Washington, DC area, New York City, or 
southern California.
    Veterans Integrated Service Network 3 is comprised of five 
VA medical centers in the New York City metropolitan area. Our 
network has the highest prevalence of hepatitis C, based on 
that survey, amongst all networks, with 13 percent. Two of the 
five VA medical centers rank among the top five VA hospitals 
nationwide in terms of the hepatitis C rates. In addition, we 
conducted a study in network 3 where we found that amongst the 
HCV-positive veterans there is a substantial rate of 
coinfection with HIV-I of 21 percent which further complicates 
the matter.
    Based on the VA survey, we estimate that there are 
currently about 11,000 veterans receiving care in network 3 who 
are infected with hepatitis C virus that do not know it because 
typically the disease does not cause any symptoms. Therefore, 
network 3 has started a program of actively identifying all 
infected veterans by actively reaching out to veterans who 
might be at-risk but do not know that they are infected.
    The way that we do it is that every veteran who attends a 
primary care clinic will receive a hepatitis C risk screen 
based on the number of risk factors, and every veteran who has 
one or more risk factors will be tested for hepatitis C. The 
Computerized Patient Record System, which I think is probably 
one of the best clinical software systems anywhere, helps the 
clinician do the screening by putting in clinical reminders, as 
it was mentioned.
    A patient who tests HCV-positive is then referred to a 
specialty clinic. These specialty clinics are usually run by 
either infectious disease physicians or gastroenterologist or 
hepatology specialists. After referral to such a clinic, the 
veteran will typically be counselled by a social worker or 
nurse on the impact of the disease, possible modes of 
transmission to family members, on alcohol abstinence, and 
vaccinations, and also information brochures will be handed out 
to the veterans. Then a specialty physician will do a thorough 
evaluation of that veteran and also have a thorough discussion 
on the pros and cons of treatment, and where possible, the 
patient will be put on treatments. Also, we will invite 
veterans, where appropriate, to participate in clinical 
research studies.
    The care of hepatitis C-positive veterans in network 3 is 
coordinated by the hepatitis C network 3 task force which meets 
monthly by teleconference. We started our work in July of last 
year. Since our inception, we have achieved a number of goals: 
One, we centralized all the molecular testing, including viral 
load and genotyping, at the Bronx Va microbiology lab, which 
also was the first lab in the VA system that introduced the HCV 
genotyping.
    Two, we are coordinating research studies within our 
network, including the one with HIV coinfection and another one 
with genotype distribution.
    Three, we have established an ongoing systematic collection 
of data on both risk factor screening, testing, and treatment 
of veterans.
    Based on this data base, we have learned that just in the 
first 4 months of systematic screening with the help of the 
clinical reminders for risk factors, the primary care 
clinicians in network 3 have already screened 22 percent of all 
veterans that receive care there. Of those who were screened, 
29 percent had a risk factor for hepatitis C or had already 
tested positive. Over the last 1\1/2\ years, 21,000 veterans at 
risk were tested for hepatitis C virus, and 27 percent tested 
positive.
    As a result of the intensive screening and referral of 
hepatitis C-positive veterans, the number of veterans who 
received treatment for chronic hepatitis C in network 3 is 
growing. In all of fiscal year 1999, we treated 383 veterans. 
In the first three-quarters of fiscal year 2000, which just 
finished in June of this year, we treated 365 veterans for 
hepatitis C, which represents an increase of 27 percent over 
the same time period of last year.
    Now as we already heard, not all veterans with chronic 
hepatitis C are candidates for treatment. About 25 percent of 
those who have chronic viremia, meaning the virus is 
detectable, or 15 percent of those who have the antibody will 
ultimately be put on treatment. The main reasons for not 
treating patients for hepatitis C include: the patient is 
reluctant to receive treatment, she/he has minimal liver 
disease, or there are serious medical or psychiatric illnesses 
that would represent a contraindication to treatment with 
ribavirin and interferon.
    Taking care of veterans and treating them for hepatitis C 
is labor-intensive and requires expensive tests and treatments. 
VA Central Office has estimated that it costs approximately 
$20,000 to put one veteran through a course of treatment. And 
this estimate does not include a possible second course of 
treatment that may be necessary when the first one fails.
    Until now, hepatitis C care in network 3 has continued at a 
very high level of quality regardless of funding issues. In 
fact, every single hospital director in our network has been 
extremely supportive of the ongoing and growing care of 
hepatitis C treatment, even though it does strain their 
budgets. Already, waiting times for a referral to the hepatitis 
specialty clinics averages 2 months, and reaches up to 4 months 
in some centers, although we would like to keep it less than 4 
weeks.
    As the number of veterans who are identified with hepatitis 
C is growing, additional staffing and funding for drugs and 
laboratory tests will be required. One of the promising ideas 
that is currently being discussed in VA Central Office would be 
to follow the example of HIV treatment, whereby veterans who 
are receiving treatment for hepatitis C would be put under 
specialty care category and each medical center, through its 
network, would receive special funding for that treatment.
    Mr. Chairman, in summary, an effort by dedicated 
professionals can buildup a systematic program of reaching out 
for veterans, testing them, and treating them for hepatitis C. 
Given the proper support, this effort can be sustained even as 
the growing number of veterans are referred.
    [The prepared statement of Dr. Brau follows:]

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    Mr. Shays. Thank you, Dr. Brau.
    Dr. Iber.

 STATEMENT OF DR. FRANK IBER, M.D., HEPATOLOGIST, VOLUNTEER AT 
               HINES VA MEDICAL CENTER, HINES, IL

    Dr. Iber. Chairman Shays and members of the subcommittee, I 
am a trained liver expert who has taught and done liver 
research in medical schools for nearly 50 years including 25 
years in the VA medical system, most recently at the Hines VA 
Hospital in Chicago. I am now retired but continue to work 1 
day a week treating veterans with hepatitis C.
    When interferon therapy was shown effective for hepatitis C 
in 1995-1996, I started a program at Hines treating all 
appropriate veterans. In the next 2 years, we treated 60 
patients, representing about one-third of our patients then 
recognized with hepatitis C. Of those who started treatment, 
some 90 percent stayed on treatment for the required 6 months.
    Treatment requires close supervision, as you have heard 
from many, because there are unknowing and life-threatening 
complications. Frequent visits, laboratory tests, special 
systems must be created to accommodate these patients in order 
to keep their cooperation in treatment. Over time, an effective 
treatment program was established using the machinery already 
present at our hospital.
    After 18 months of supervising the HCV program, I retired 
for reasons of age. I was not replaced with another liver 
doctor because of budgetary restrictions and our administration 
did not recognize the need for a specialist. The followup of 
patients was left to primary care doctors who usually had only 
one HCV patient under treatment.
    Four months after my departure, only one-tenth of the 
patients requiring treatment remained on their drugs. The 
supervising physicians often stopped medications due to limited 
familiarity with possible toxicity, and the patients stopped 
medication because they could not obtain prompt evaluation.
    After 5 months of retirement, I returned to Hines as a 
volunteer 1 day each week to supervise the HCV treatment 
program. My primary focus is counseling patients before they 
start treatment, advising and reviewing results of treatment 
and side effects, reassuring many patients who are frightened 
or discouraged about continuing treatment. Our VAMC has 
identified more and more veterans who have hepatitis C.
    However, the harsh reality is that the numbers identified, 
now almost 450 patients, have overwhelmed our system for 
evaluating and following these patients. This inundation has 
led to delays of 4 to 6 months in initiating treatment, of 
fewer identified patients being admitted to treatment, and 
failure to keep patients on treatment. All of these problems 
exist because there are just too few doctors and nurses 
assigned to the hepatitis C program.
    In my experience, special needs of hepatitis C treatments 
are present, and many of them have already been pointed out. 
You need access to a physician experienced with hepatitis C; 
you need an integration in an expedited fashion of lab, 
pharmacy, consultants, particularly psychiatry; you need a 
full-time professional coordinator, usually a nurse; and you 
need a committed administration. Currently, all of these 
elements are not yet in place in our VA hospital even though we 
have treated more than 200 patients.
    Let me elaborate on these unique needs. An experienced 
hepatitis C physician is needed because only 8 percent of VA 
patients meet every nuance of the current VA guidelines for 
treatment, yet at least a third, and maybe even more presenting 
patients will benefit from treatment. Determination of which 
details are important require experience and training. Upon 
completion of current treatment, two-thirds of the patients, 
not the veterans we heard here today who were success stories, 
but the majority still have the infection and these veterans 
want and even demand informed information on what they should 
do next. This requires special help.
    Second, an expedited system. Interview and laboratory 
testing must be performed at least monthly. Drugs cannot be 
provided until these safety checks are completed. About 1 in 10 
of our visits require consultation with another type of doctor 
to evaluate the severity of side effects. The four-fifths of 
our current patients who have no extra problems complete all of 
this in a single monthly visit of 1 hour's duration, and this 
allows people to continue a full-time job. If the ordinary 
clinic procedure were followed, a minimum of three visits, 
taking at least 6 hours, would be required to accomplish the 
same thing.
    And finally, you need a nurse or other professional to 
supervise, interfacing when the unexpected occurs, and assuring 
the patients at all times.
    What can Congress do to help? I think that we have already 
heard some of these things are approaching being in place, but 
I think every health unit should report not only the new 
hepatitis C patients identified, but those entered into 
treatment in the same time and those who have a cure. Because 
if we put in the cure, this will provide a superb scorecard of 
how well each unit is doing.
    Second, and I think others have mentioned this, hepatitis 
C, like HIV, is a disease that requires a lot of resources to 
manage. It should be reimbursed as a complicated disease, 
certainly not a simple one.
    Every facility should have access to the elements of a 
hepatitis C evaluation, as presented by Dr. Ho, and treatment. 
This, whenever possible, should be onsite, but sometimes it 
will be necessary for it to be in a nearby VA facility or even 
purchased through civilian outlets through the consultation 
process.
    And it is my opinion that every facility that has at least 
10 patients under treatment with HCV should have a full-time 
professional assigned priority to manage these patients and 
that this should be specifically funded centrally so that the 
money cannot be used for other things, to make sure that such a 
person is available at every site.
    Thank you very much for your attention.
    [The prepared statement of Dr. Iber follows:]

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    Mr. Shays. Thank you very much, Dr. Iber.
    Mr. Snyder, you are going to have the floor, then I am 
going to take it, and then I may have to leave, but I will let 
you come back and ask some questions afterwards as well, and 
then you can just adjourn the committee. So why don't you 
start.
    Mr. Snyder. You all heard the testimony by our veterans 
this morning and some of them had some fairly strong worded 
statements to make about some of the evaluation and treatment 
processes that they saw. Dr. Iber, in your written statement, 
and I think you said it also, ``the harsh reality is that the 
numbers identified have overwhelmed our system,'' and then you 
say, ``The infrastructure needed to evaluate, advise and treat 
the volume of veterans presenting with hepatitis C is simply 
not there.'' That is a pretty confirmatory statement of what 
our veterans said this morning.
    Dr. Holohan, do you agree with that?
    Dr. Holohan. I have no evidence to disagree with that.
    Mr. Snyder. So that we currently have a VA system 
overwhelmed with numbers and more is to come?
    Dr. Holohan. I think it is probably premature to say the 
entire system is overwhelmed with numbers. I think that some of 
the testimony you heard today indicate that people are working 
hard but they seem to be able to meet the challenges. I would 
be naive, and you would consider me dissembling, to say that I 
thought that was the case throughout the country.
    Mr. Snyder. In terms of specifics, Dr. Holohan, is this a 
problem of money, a problem of just catching up with a 
relatively new disease entity? Where do you see we are in this? 
I have a lot of praise for the VA in terms of over the last 
decade I think you all have been ahead of the curve most of the 
time in terms of research and trying to get a handle on it. But 
it is obvious there are some problems from your own statement 
just a moment ago.
    Dr. Holohan. Right. I think probably all of the factors 
that you mentioned obtain. No. 1 is the absolute number of 
veteran patients that will require evaluation and treatment is 
large. The systems that existed did not exist to meet that 
demand. So I think there are going to be inevitable 
bottlenecks. I think the issue of funding was probably raised 
by the VA several years ago when we requested additional 
funding for hepatitis C initiatives. One of the problems is in 
terms of the specialists. It is a lot easier to take money from 
your wallet today and buy drugs than it is to take the same 
amount of money and find a hepatologist willing and able to 
work in VA. So I think it is a number of those things that are 
happening at the same time.
    Mr. Snyder. Are there statutory things getting in your way?
    Dr. Holohan. Not to my knowledge, sir.
    Mr. Snyder. Pay scales for hepatologists, is that statutory 
or is that something you all set?
    Dr. Holohan. Those are reviewed. I will have to defer, but 
I think those pay scale issues are reviewed on a routine basis 
every 4 years, and it is coming up again. But in my experience, 
and it is not limited to hepatologists, the pay scales are 
issues for many, many, many specialties--interventional 
radiologists, anesthesiologists, etc.
    Mr. Snyder. One of you had somewhere in your written 
statement I think it was a $30,000 figure. Was that you, Dr. 
Iber?
    Dr. Iber. Yes, sir.
    Mr. Snyder. Which is less than what you would get in the 
private world.
    Dr. Holohan, what is your assessment of the current status 
of the screening aspects of things. Dr. Iber's statement is 
that we do not have the infrastructure to evaluate and advise. 
Do you agree with that also?
    Dr. Holohan. Not entirely. I alluded to the automated 
clinical reminder system, which was put into effect because we 
came to believe that the response to the Under Secretary for 
Health's information letter in 1997 that listed risk factors 
that each veteran patient was to be quizzed about, and I am 
sure you have seen the document, we did not seem to be getting 
the kind of response that we had hoped. So it was decided that 
we would spend the time, effort, and money to develop an 
automated risk assessment reminder system.
    The information I have been given from both the Chief 
Information Officer and from our clinicians, some of whom 
mentioned it in their testimony, is that it appears to be 
pretty effective as a screening and evaluation tool. So I am 
not quite as critical as I might have been in the past before 
this was instituted.
    Mr. Snyder. I had one specific question, Dr. Holohan. You 
quoted a 20 percent figure, 65,000 out of 325,000 I believe.
    Dr. Holohan. Right.
    Mr. Snyder. Which is substantially higher than the national 
``dip stick'' day.
    Dr. Holohan. Correct.
    Mr. Snyder. I guess what you are saying that this is just 
not a typical population?
    Dr. Holohan. Actually, the percentage positive out of all 
tests done has been diminishing over time. My suspicion when we 
first began to get the data from Dr. Roselle's Registry was 
that people were not actually being ``screened'' simply on the 
basis of risk factors. What was happening was most tests were 
being done because the clinician suspected the patient had 
liver disease for some other reason. The initial data we got in 
the first year of the Registry was that 30 percent of all 
patients screened were positive, and that is very high. That 
indicates to me that they were not routinely following the risk 
factor list and screening on that basis, they were using more 
compelling information. But that has dropped to 20 percent now. 
It probably should be a little lower than that, I am not sure 
how much lower. But I think the change indicates that there is 
more screening than testing for cause.
    Mr. Snyder. Let me see if I understand what you are saying. 
Are you saying that if people are following your screening 
procedures, you are going to have some of your risk factors 
that are lower risk factors but they need to be tested also.
    Dr. Holohan. Correct.
    Mr. Snyder. And if all of them are tested, a substantial 
number of them are not going to be positives and so you should 
have a higher negative rate than you think you have right now. 
Is that correct?
    Dr. Holohan. That is my belief, yes, sir.
    Mr. Snyder. I understand. There was some criticism earlier 
by our panel of veterans about the treatment protocols. With 
regard to the treatment of patients that are treated in the VA 
system, is the treatment that you begin on individual veterans 
and the protocols that you follow, is that the same as would be 
found in a non-veteran hospital, in a civilian hospital, or has 
it been modified?
    Dr. Holohan. I will defer to the clinicians. But the first 
thing I would say is I am not sure what most civilian hospitals 
use. There are no systems that have provided that. I disagree 
very much with a statement made by one of the earlier panelists 
that our guidelines are wrong and need revision. I do not 
believe that is the case. I think the people who put that 
together are among the top liver experts in the country. But I 
will defer to our active clinicians as to the treatment 
guidelines.
    Dr. Ho. I think the VA treatment guidelines are pretty much 
exactly as what is being followed in the community. They are 
largely based on the NIH consensus statement which now is a 
couple years old. These guidelines are just guidelines, and we 
are getting new data everyday and so there is some evolution of 
those guidelines. There is one area of people who have normal 
liver function tests that is highly controversial among the 
experts right now and that still is evolving. The current VA 
and NIH guidelines call for perhaps not treating those 
patients. But I consider that is one area that will continue to 
evolve and we will have to wait for the experts. But at the 
current time, I am very satisfied with the VA guidelines and 
believe it is the same as in the community.
    Dr. Brau. I would think that in the VA the veterans with 
hepatitis C receive the same good care that they would receive 
anywhere else in the civilian world. The treatments are 
changing and things like the liver enzymes and whether one 
should treat by liver enzymes or by liver biopsy is being 
discussed and is controversial in the hepatitis C community. 
But typically the experts who treat the veterans do go to those 
international conferences where they do hear the latest opinion 
on that and keep themselves up to date.
    Mr. Shays. I thank the gentleman. We will go back to you 
later. Before I have to leave at 1, I would like to ask a few 
questions. They relate to the conceptual issue of two Centers 
of Excellence and a whole number of other facilities that are 
not so-called centers of excellence. I do not understand the 
concept, and you will understand why when I ask the question 
later. But maybe you could explain the concept to me, Dr. 
Holohan.
    Dr. Holohan. I am actually glad you brought that up. The 
impression that I got from previous discussions is that the 
view of the two Centers of Excellence is that they are 
designated as centers of clinical excellence for the treatment 
of hepatitis C. And such is not the case.
    Those two centers were selected and are centrally funded 
for their work, not centrally funded for clinical care, in two 
areas. One is educational production and distribution of 
educational and informational materials, counseling, and so on 
and so forth, which is the major responsibility of the Center 
at the VAMC in Miami. The second is on evaluation of treatment 
guidelines, editing of items that go into the VA Web site, and 
monitoring and supervision of research, such as the industry-
funded 26 center study of combination therapy and studies of 
new drugs such as pegylated interferon, which is from San 
Francisco.
    So they are not designated as a Center of Excellence 
specifically for the treatment of hepatitis C. They are Centers 
of Excellence for the VA as a whole in areas of educational 
materials, counseling, guidelines, and clinical research. I 
dare say that the clinicians at Miami or at San Francisco would 
not hold themselves out to be members of a Center of Excellence 
greater than that in New York or in Minneapolis.
    Mr. Shays. You heard witnesses who testified earlier who 
basically described I think some pretty alarming examples of 
how they wanted the service, they felt they were entitled to 
it, they were sick and were either being told they did not have 
a problem, or they had a problem but we couldn't treat you a 
particular way. You have been kind of silent to that. I would 
love for you to just talk a little more about what you heard 
and tell me what I should infer from that and what the 
committee should infer.
    Dr. Holohan. Well, I will speak for Central Office. There 
have been a number of times when such statements or claims have 
been made and I have always said to VSO representatives or in 
some cases VA employees that if you have an incident like that, 
you tell me. I have given my phone number and e-mail out at our 
national meetings. It is something I want to know about and it 
is something I am sure that Dr. Garthwaite wants to know about. 
It is difficult for me to understand why, assuming this is in 
fact accurate, that a VAMC would tell a patient known to be 
positive for hepatitis C that it is their practice not to do 
liver biopsies and not refer them. That does not make any 
sense.
    Mr. Shays. It does not make any sense, but we had testimony 
that in fact was happening. So are you saying that it does not 
happen, or are you----
    Dr. Holohan. I am saying, chairman, that this is the first 
time this has been called to my attention.
    Mr. Shays. We had testimony last year that there were cases 
where people were not being covered, and we cited three cases. 
Mr. Baker came back today and just said:

    I have been asked to followup on the examples that I 
produced last year. Mr. Chairman, I am sorry to report that 
these veterans' lives have gotten dramatically worse. The 
veteran from Idaho was finally tested, but has not yet been 
allowed to receive treatment in VISN 19, in fact, he has been 
told that despite evidence of fibrosis of the liver, his enzyme 
levels are not elevated enough to consider him for treatment. 
As for the veteran from Montanan, the VA has ``done a fine 
job''--he was never treated for his hepatitis C and in November 
of last year he succumbed to complications from a liver 
transplant due to Hep-C. I attended his funeral. In the case of 
my personal friend from New Jersey that served with the 173rd 
Airborne, he is now number 7 on the liver transplant waiting 
list. Even though we personally hand-delivered his case to Dr. 
Garthwaite, NO, I repeat NO action has been taken. The VA 
continues to maintain that this recipient of the Bronze Star 
for Valor cannot show a nexus between his service and his 
hepatitis C infection because his duty assignment was not 
``medic.''

    Dr. Holohan. I can respond to at least two of those, not 
the patient who has died. The patient in Idaho, according to 
information I have received from VA people, refused to allow 
his name or social security number to be made known to the VA, 
so we cannot track him. The patient in New Jersey, I have, and 
I can forward it to you, a letter from Mr. Eppley to the 
regional office in New Jersey saying that the evidence they 
had, despite the fact that the diagnosis of hepatitis C was 
made in the civilian sector, established a nexus because of his 
service in Vietnam and that the regional office should consider 
his claim as well-grounded.
    Mr. Shays. And what is the status of that?
    Dr. Holohan. All I can tell you is that I received 
yesterday a copy of the letter from Mr. Eppley to the regional 
office telling them they should consider his claim for a 
service-connection as well-grounded.
    Mr. Shays. But that is yesterday.
    Dr. Holohan. I am not sure what you mean.
    Mr. Shays. This was an example at a hearing we had many, 
many, many, many months ago.
    Dr. Holohan. We were unable to get names and social 
security numbers of the people cited last year until very 
recently.
    Mr. Shays. When Mr. Bryant spoke, he said: ``In early 1999 
I went to an appointment at the Spokane VAMC. I told the VA 
doctor of my concerns about my hepatitis C and the health of my 
liver. I asked for a liver biopsy and a viral load test, as 
those were the VA's own procedures for treatment of HCV. I was 
shocked and surprised by his answers: One, this hospital has a 
policy of not doing liver biopsies. Two, in looking at your 
past LFT tests, you do not meet the protocols for interferon 
treatment as they are below twice normal. Three, I will order a 
viral load test and we will discuss it at your next appointment 
in 3 months.''
    What should I infer from that?
    Dr. Holohan. That is wrong. That is inadequate medical 
treatment.
    Mr. Shays. Right.
    Dr. Ho. Mr. Chairman, if I might just add something. I 
think there is a lot of frustration on the part of veterans who 
are informed by the Internet and by support groups and who have 
certain information and who perceive that there is a lack of 
education on the part of their health care professional. It is 
an ongoing issue about education of our health care 
professionals. You optimally need a liver specialist who has 
been able to keep up to date to really give the appropriate 
recommendations. There just are not that many in the VA medical 
centers. In the entire State of Minnesota, there are maybe a 
couple hundred gastroenterologist, but of those couple hundred 
there is maybe 20 who really have kept up to date and who are 
treating the majority of liver, and hepatitis C patients in the 
entire State. So you can see that confusion about 
interpretation of current data might happen in a clinical 
setting.
    Mr. Shays. Miss French used the statistic of 10 percent of 
our veterans, Dr. Iber, having hepatitis C. That seemed to me a 
bit inflated. Would that be a statistic you would agree with?
    Dr. Iber. I think it is pretty close to that. I feel that 
it is 8 percent, but that is not recognizing that the two 
coasts of America have a much higher percentage. So I think 10 
percent may well be an accurate figure.
    Mr. Shays. Dr. Brau, in your facility, what are you finding 
as the statistic?
    Dr. Brau. We take the statistics from the survey which was 
done really on an unselected population in March 1999, which is 
not the same as if you look at the antibody tests of those who 
are tested because of risk factor or liver disease. And by that 
statistic, our network has 13 percent, and our facility in 
excess of 14 percent.
    But to catch up on what was mentioned earlier, I believe 
every VA medical center should have a dedicated center for 
hepatitis C. I am particularly encouraged by the growing number 
of my infectious disease colleagues who are interested in going 
to this field and get themselves educated and become experts.
    Mr. Shays. Given the number of 14 percent, somewhere in 
that range, just use the number 10 percent, we are saying that 
10 percent of particularly our Vietnam veterans----
    Dr. Iber. All veterans.
    Mr. Shays. All veterans.
    Dr. Iber. Higher in Vietnam.
    Mr. Shays. All veterans, not 1 percent, not 2 percent, 10 
percent have hepatitis C and we know it to be a silent killer. 
It would strike me that this is a gigantic percentage and one 
which, Dr. Ho, your comment, though truthful, is somewhat 
alarming that we do not have the expertise in our facilities. 
Hence, Dr. Holohan, we have this problem. You have restraints 
based on dollars. But I always believed if I were in your shoes 
or anyone else's shoes in the administration, I would lay it on 
the line to Congress and then say Congress it is in your lap. 
But it is not presented that way. I would think VA would say we 
need this amount to deal with this problem, to deal with the 
protocols that we have, and anything less than that will mean 
that you will get substandard care. And then it is on Mr. 
Snyder's table, my table, and Mr. Souder's table. But I do not 
think we are getting that yet. So then it goes back on the VA.
    We get a lot of stories like this that you say are 
unacceptable. But I do not think these are exceptions, I think 
they are more the rule based on, as you have pointed out, Dr. 
Ho, that we just do not have the expertise. And do we all agree 
that if they are not treated they become ill and die. Is there 
anyone who disagrees with that?
    Dr. Brau. Mr. Chairman, not everybody who tests positive 
for the antibody actually has the chronic viral illness. If you 
count the false-positive rates and those who cleared the virus 
through their own immune system, about two-thirds of those who 
have antibody test positive have the virus. And of those who 
have chronic virus in their blood and in their liver, some 
patients do not progress that far. So we see patients who have 
been infected 40, 50 years and on biopsy have minimal liver 
disease. So for them, they will probably not be killed by the 
virus. But others progress much faster and that is why we need 
to do a specialty evaluation including liver biopsies to see 
who is most urgently in need of treatment.
    Mr. Shays. That should be able to take place at any VA 
hospital?
    Dr. Brau. Yes.
    Dr. Iber. Agree.
    Mr. Shays. And it does not right now, correct?
    Dr. Holohan. That appears to be the case.
    Mr. Shays. Mr. Souder is here to Chair, but I will yield 
the time now to Mr. Snyder and then he can claim time.
    Thank you very much, gentlemen.
    Mr. Snyder. Thank you very much, Mr. Chairman. I just have 
three or four more questions.
    Dr. Ho, I wanted to ask you a bit of an unrelated question. 
You talked about the combat blood exposure in your comments. 
You had the fairly dramatic example of a piece of a leg bone 
being implanted in one of your patients. I assume that we are 
talking about exposure to kind of the large amounts of blood 
that can occur in combat situations, not just the fact of being 
under fire, but the subsequent people that would treat, 
potentially the folks that load them into helicopters, the 
folks that are at the field medical facilities. Is that 
correct.
    Dr. Ho. I have one patient who was an ambulance driver 
actually at a base here in the States during the Vietnam war, 
and at that time it was not common practice to use plastic 
gloves. If someone was bloody, you just grabbed them and hauled 
them in. And as far as we know, that is the only risk factor 
that particular patient had for hepatitis C. So it involves 
that, the blood transfusions, and then the actual combat 
injuries and blood exposures that are risk factors. These are 
significant risk factors, as shown by research done by Dr. 
Wright's group in San Francisco, and of course unique to this 
patient population.
    Mr. Snyder. Dr. Brau, you mentioned earlier that you expect 
waiting times will become longer, which is kind of an ominous 
sign for Members of Congress who hear about waiting times, and 
of course for the veterans who want to be treated. Do you agree 
that if you have longer waiting times that is kind of a symptom 
of what Dr. Holohan and Dr. Iber describe as an overwhelmed 
system. Is that how you would describe where you are at today?
    Dr. Brau. That is correct. And that sort of stresses the 
fact that the support for the treatment includes not just the 
drug cost and the laboratory cost, but also staffing which 
needs to be added to have really a comprehensive 
multidisciplinary team to take care of the problem. One thing 
that we have found also is the longer the waiting time, the 
higher the drop-out rate. So patients get scheduled but then 
they do not show up. We will call them to reschedule them. But 
we would like to have the waiting time as short as possible.
    Mr. Snyder. You mentioned infectious disease specialists, 
not just GI doctors as becoming potential providers of 
treatment. Are you within your system looking at some creative 
ways, taking some general internists, for example, already 
within the system and giving them additional training, or is it 
going to have to be a gastroenterologist that is primarily the 
specialist that does the ongoing care?
    Dr. Brau. I think we should look first at the specialists 
who are most involved in this disease. This is an infectious 
disease that does involve the liver. And while traditionally 
the studies on the non-A, non-B hepatitis, which was not known 
to be virally caused, was done by gastroenterology, more 
infectious disease experts are getting into the field and they 
bring in all of the experience with the other big viral 
disease, HIV. So I think it lends itself to a collaboration. 
There might be the occasional general internist who has a lot 
of dedication to the disease and is willing to educate herself 
or himself to the illness, but I think we do have a number of 
infectious disease and gastroenterology, hepatology specialists 
who together can put a comprehensive treatment program in 
place.
    Mr. Snyder. HIV has been mentioned several times I guess 
because you use comprehensive teams. Are there other diagnoses 
within the VA that also have special care teams or 
comprehensive teams? What are some examples of that, Dr. Iber, 
you are nodding your head.
    Dr. Iber. Chemotherapy I think uses a superb specialty 
team, albeit usually a little shorter than hepatitis C. But I 
think actually we incorporate the chemotherapy team and our 
patients get great care in fact when the chemotherapy team of 
nurses and consultants is responsible for them.
    Mr. Snyder. Do we have a shortage, Dr. Holohan, of 
oncologists in the VA system also?
    Dr. Holohan. Yes, sir, we do.
    Mr. Snyder. Would you describe our treatment of cancer 
within the VA system as ``the harsh reality, it is overwhelmed 
by our system,'' or not?
    Dr. Holohan. No. In fact, I think we have adapted better in 
the oncologic arena than we have in hepatitis C. I think part 
of that is simply a function of time and learning how to save 
energy and resources while getting the job done.
    Mr. Snyder. The last question I want to ask you, Dr. 
Holohan, I assume that the chairman will want to do followup or 
maybe the VA will want to do hearings in the future, 6 months 
from now, will the harsh reality of our veterans' system for 
care of hepatitis C be that we are overwhelmed?
    Dr. Holohan. I think trying to respond to that prediction 
is the surest way to appear a fool in 6 months. I hope not, but 
I am not sure.
    Mr. Snyder. Do you have a specific action plan in mind that 
is going to change that reality over the next 6 months?
    Dr. Holohan. Well, some we have already talked about. I 
think the clinical assessment reminder system has dramatically 
improved the evaluation and screening. I think that the 
additional funds released this fiscal year by the Under 
Secretary will help, and I think the adjustments, whatever they 
may be, in fiscal year 2000 about increasing funding for 
hepatitis C based on the workload and predictions as to cost 
will change the budgetary circumstances significantly. Now in 
terms of being able to go out and dramatically increase the 
number of gastroenterologists or infectious disease experts, I 
am not quite so sanguine because that is a perennial problem 
for VA or any salaried medical care system.
    Mr. Snyder. Dr. Iber, do you have a comment?
    Dr. Iber. Yes. I think that the VA has great success 
particularly with this computerized recognition of screening 
and the need for it in identifying more patients. My concern is 
what do we do with them then. I think that they are very slow. 
The principal use of moneys has been to pay for the drugs which 
are very expensive, but I think availability of drugs has not 
been a problem in my experience for at least 2 years. We have 
made them available, we get what we need in any quantity we 
need them. But the personnel assigned with priority to 
supervise the safe administration of these drugs is the big 
ingredient that is lacking, at least in the center that I am 
familiar with, and as I talk to colleagues in the greater 
Chicago area, that is a pretty uniform problem in our five VA 
hospitals there, we cannot keep up with the load.
    Mr. Snyder. My last question for each of you is just a 
general question. Knowing you as somebody who has practiced 
medicine for 20 years and have been around academicians, you 
are a pretty independent minded group. Is there anything, Dr. 
Brau, that you would like to comment on today that you think we 
ought to know about?
    Dr. Brau. I think the effort is ongoing in the VA system, 
in some centers more than in others, but everybody is going in 
the right direction. I think if we get the right support, we 
can maintain a very high level for the treatment of our 
veterans with hepatitis C. The issue of personnel that is 
dedicated to this does need to be addressed in the support 
system.
    Mr. Snyder. Dr. Ho, any last comments?
    Dr. Ho. I think the concerns expressed today are important 
and I know the commitment of the administration of VA is very 
much there and I think, in general, ahead of the ball game. The 
big issue now is finding these patients with hepatitis C and 
educating them. I think it boils down to each VA medical center 
needs at least one or two full-time personnel dedicated to 
hepatitis C. We need to find the patients with hepatitis C 
because in a year, a year and a-half, our treatment is going to 
change, and it is going to be much better, I believe, and then 
we are going to need to start treating these people. We have a 
lot of people just waiting for that.
    Mr. Snyder. Dr. Iber, any final comments?
    Dr. Iber. I have some concern that the VA is putting a lot 
of thrust on developing their own materials, their own 
guidelines as though the veteran with hepatitis C is completely 
a different species of cat from the civilian one. I think that 
is totally incorrect. There has been a tremendous amount of 
work done, there are wonderful educational materials out there 
on the civilian side that are reproduced by industry. I wonder 
if the VA, rather than develop their own through a Center of 
Excellence designed to this and creating what has been in my 
experience third-rate and mediocre pamphlets and educational 
materials compared to what is already out there, that they 
might be well off just to incorporate existing ones into the 
thing and get on the problem of using their resources for the 
task at hand of treating the veterans in the various 
facilities.
    Dr. Holohan. Let me interject by saying we do that, we use 
materials produced by Hepatitis International and the American 
Liver Foundation, not intending to reinvent the wheel.
    Mr. Snyder. Dr. Holohan, do you have any last comments?
    Dr. Holohan. Only one, and that is there was a statement 
made in an earlier panel that VA treats those patients who 
benefit the least, that the people who could benefit the most 
are not treated by VA. I would like to see evidence of that. I 
think my two colleagues who are treating patients both in the 
midwest and in New York would probably not agree that they are 
personally treating patients that benefit the least.
    Mr. Snyder. Thank you all for your time today. Let me just 
say in closing, Congress is your ally in this business. This is 
a whole new entity. You all have been perhaps leaders in the 
world in dealing with this disease and we want to help you with 
it. I know Mr. Shays feels that way, I know the Veterans 
Committee feels that way. But I hope you will feel free to let 
us know when there are things that we need to be doing. I 
appreciate your time today. Thank you all.
    Mr. Souder [presiding]. Dr. Ho, I wanted to followup on a 
comment that I heard you say a little bit ago, which is that in 
all of Minnesota you only had was it 20 people or 50 people who 
could effectively be current on this disease.
    Dr. Ho. It is a rough estimate. The people who are familiar 
with hepatitis C are ones who go to the annual meetings and 
keep up. It is a constantly changing and evolving area. Again, 
to my knowledge, there is a small minority of 
gastroenterologists who are doing the large majority of the 
care of hepatitis C patients in the State of Minnesota.
    Mr. Souder. Are you saying that there is a shortage in the 
general population as well as in the VA of people who----
    Dr. Ho. The State of Minnesota currently has a shortage of 
gastroenterologists in the entire State. Every single private 
group, to my knowledge, is looking to hire more 
gastroenterologists and are having some difficulty doing that.
    Mr. Souder. Does that tend to be true nationally, do you 
know, Dr. Holohan?
    Dr. Holohan. Yes. In general, that is the case. I do not 
want to get on a philosophical course about the push toward 
primary care and what we are seeing now as new technology 
develops, the shortage of interventional radiologists, medical 
oncologists, gastroenterologists, cardiologists, but in fact 
that is a common thread. That is one of the reasons why the VA 
is one of the few agencies that still will issue waivers for J-
1 visas for medical specialists.
    Mr. Souder. It is my understanding that you have asked for 
$20 million in the national reserve fund to supplement funding 
for hepatitis C testing and treatment but that you have only 
spent $39.2 out of the $190 million that we allocated in last 
year's budget. Could you explain why that money was not spent?
    Dr. Holohan. Since I have gotten your snap from center, I 
will now punt to the Chief Financial Officer.
    Mr. Norris. First of all, let me say that I am a Vietnam 
veteran and am one of the medevac pilots that Miss French 
referred to from that war. In fact, due to the timing, I may 
very possibly have been the medevac pilot that evacuated Mr. 
Lesinski when he was wounded. So I go back a long way with 
concern for these veterans and I do not think that feeling is 
unique within the VA; I think that feeling permeates the 
organization.
    We have concerns about that because we do have $195 million 
in the budget this year for hepatitis C. As best we can tell, 
as you stated, we spent about $39 million through the first 
half of the year, and we currently expect to spend about $100 
million of that by the end of the year. The money is out there. 
We are perplexed as to why it is not being spent. I suspect 
that part of it is for the reasons that have been stated in 
terms of access, availability of providers to screen, to 
provide the treatment, and to get the patients in.
    We do want to provide more visibility for that. So we have 
sent out $20 million tied specifically to those costs that have 
been experienced in the system so far this year. We hope before 
the beginning of the fiscal year to change our VERA allocation 
model so that it will actually highlight that we have money 
tied to hepatitis C for complex care patients and get that out 
so that everybody will be aware that the money is available. We 
have $340 million in the budget next year for hepatitis C. But 
we do have concerns about hepatitis C spending and there is an 
effort to make sure that we are doing all we can do from a 
financial standpoint to make the resources available.
    Mr. Souder. So what I understood you to say is you do not 
know why it is not being spent. And how are you trying to find 
out?
    Mr. Norris. One of the problems we have had is actually 
tracking the expenditures. So because we do not have data, as 
Dr. Holohan mentioned earlier with tracking patients, we do not 
have data specifically designed to track and record hepatitis C 
costs. So it is possible that we are spending more than that 
and we just cannot identify it. We have set up a pretty 
elaborate system to identify those patients and to identify the 
cost associated with them, made some assumptions about cost 
associated with those patients for screening and testing of 
patients who turn out to be negative, because there is a cost 
to that.
    So we are doing everything we can to determine what we are 
spending, and the fact that we are not spending everything that 
we should be is a concern. But, as I said, I suspect it is 
because of the lack of ability to get this up and running. It 
took us a few years to get the AIDS program up to the status 
that it is now, and we do that pretty well I think. So I think 
we want to pattern what we are doing here with hepatitis C 
after that and employ some of the lessons learned there and 
hopefully improve our tracking hepatis C costs. But it does 
take a little time to get that going.
    Mr. Souder. My understanding is it has taken almost 2 years 
to try to get a data set together that you can compare. Because 
you are just telling me that part of your problem is you do not 
have the data, and my understanding is it has been about 2 
years in trying to develop this data. Why is it taking so long 
to figure out what you need to compare to? Did this suddenly 
just drop in your lap?
    Mr. Norris. No. The point I was trying to make is that we 
are concerned about the lack of the spending. And to date, the 
amount that we have identified as spending on hepatitis C does 
not approach the estimates for our projections based on various 
assumptions that we made that may be incorrect. But it at least 
raises the issue. And so we have scoured the data bases, we 
have actually established now this registry, that Dr. Holohan 
mentioned, which we are bumping these various data bases 
against to make sure we are accounting for every patient. I am 
simply saying that we are looking to see if there is something 
we are missing. We are not sure that we are, but if there is 
something, we want to know about it.
    Mr. Souder. I would yield to Mr. Snyder.
    Mr. Snyder. The staff has put in my hand a copy of the 
transcript from the hearing that Mr. Shays conducted in June 
1999. Mr. Brownstein, who was the president of the American 
Liver Foundation, if I just might read a paragraph of his 
testimony looking prospectively at this issue of how to spend 
the money. He said: ``First of all, the $250 million of 
treatment that has been committed will not happen. It will not 
occur unless the infrastructure is developed. You cannot just 
have money for treatment without having the mechanisms to 
deliver the care. So the worst thing that could possibly happen 
is you reconvene this body next year and find out that only $30 
million, $50 million, or $75 million was spent in the year 
2000. That would indeed be a tragedy because that would not 
signify there isn't a need, it would signify that we have not 
effectively translated that need into an effective demand that 
can be responded to.'' Mr. Brownstein gets some points for 
prediction, doesn't he. Thank you, Mr. Chairman.
    Mr. Souder. The concern I have is not that we should not be 
spending the money, and that in fact sometimes does happen when 
the money doesn't get spent that people will question it, but 
in this case your request is even going up. A problem that I 
would have, as somebody who is not an expert in this at all, is 
if the general population is 1.8 to 2 percent, veterans are 
looking at 8 to 10 percent, we have heard here this morning 
that this did not suddenly occur, the Vietnam war was not over 
last year, and what I am hearing is that you are trying to 
figure out, trying to sort that through, and trying to rectify 
data bases. It may be that there are not sufficient people even 
to treat it if you find that. But I have a concern as to why 
this took so long.
    Second, the funds are there. We need to have clear 
explanations as we are moving through, and we will have budget 
questions, but we also need to make sure our veterans are 
covered and that with all due diligence we find that so. And if 
it is an infrastructure problem that we do not have enough 
people in the specialty area, that is identified to Congress 
and that becomes a focus. If it is a problem that there is not 
enough outreach to the veterans, then that becomes a focus. But 
there needs to be some clarity as we move through this and your 
execution of this program.
    I want to thank each of you for being here, as well as 
those veterans who were willing to speak out on the first 
panel, as well as Miss America.
    I think one thing that Chairman Shays has proven, both in 
this committee and over in the human services side and the 
Medicare where I worked with him for a number of years, is that 
he is aggressive in followup and in continuing interest, 
whether it has been the Persian Gulf Syndrome question, whether 
it has been in anthrax vaccinations, or hepatitis C. He will be 
persistent, he will continue to monitor, and he will work for 
the legislative and funding needs that we need. And while not 
all the members may be here today, we have aggressively backed 
him up in that because we know the thoroughness that the staff 
pursues in these issues.
    So we would appreciate it if you will stay in touch with us 
and be aggressive with us. Nobody deserves our care more than 
those who sacrificed for our country and often they are in the 
back seat
in how they get their care. So we want to be more aggressive in 
making sure that they are covered.
    With that, this subcommittee now stands adjourned.
    [Whereupon, at 1:25 p.m., the subcommittee was adjourned.]
    [Additional information submitted for the hearing record 
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