U.S. GOVERNMENT PUBLISHING OFFICE

31–485 PDF WASHINGTON : 2019

S. HRG. 115–469 

PROGRESS TOWARD A CURE FOR TYPE I 

DIABETES: RESEARCH AND THE 

ARTIFICIAL PANCREAS 

HEARING 

BEFORE THE

SPECIAL COMMITTEE ON AGING 

UNITED STATES SENATE 

ONE HUNDRED FIFTEENTH CONGRESS 

FIRST SESSION 

WASHINGTON, DC 

JULY 26, 2017 

Serial No. 115–8 

Printed for the use of the Special Committee on Aging 

( 

Available via the World Wide Web: http://www.govinfo.gov 

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SPECIAL COMMITTEE ON AGING 

SUSAN M. COLLINS, Maine, Chairman 

ORRIN G. HATCH, Utah 

JEFF FLAKE, Arizona 

TIM SCOTT, South Carolina 

THOM TILLIS, North Carolina 

BOB CORKER, Tennessee 

RICHARD BURR, North Carolina 

MARCO RUBIO, Florida 

DEB FISCHER, Nebraska 

ROBERT P. CASEY, JR., Pennsylvania 

BILL NELSON, Florida 

SHELDON WHITEHOUSE, Rhode Island 

KIRSTEN E. GILLIBRAND, New York 

RICHARD BLUMENTHAL, Connecticut 

JOE DONNELLY, Indiana 

ELIZABETH WARREN, Massachusetts 

CATHERINE CORTEZ MASTO, Nevada 

KEVIN KELLEY, Majority Staff Director 

KATE MEVIS, Minority Staff Director 

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CONTENTS 

Page 

Opening Statement of Senator Susan M. Collins, Chairman .............................. 1 

Statement of Senator Robert P. Casey, Jr., Ranking Member ............................ 3 

PANEL OF WITNESSES 

Paul Sparks, Actor, New York, New York ............................................................. 5 

Griffin P. Rodgers, M.D., M.A.C.P., Director of the National Institute of 

Diabetes and Digestive and Kidney Diseases, National Institutes of Health, 

U.S. Department of Health And Human Services ............................................. 7 

Charlie Albair, JDRF 2017 Children’s Congress Delegate, Gray, Maine ........... 10 

Lorynn Watt, JDRF 2017 Children’s Congress Delegate, Stroudsburg, Pennsylvania ................................................................................................................. 11 

Angie Platt, Chair Mom of the JDRF 2017 Children’s Congress, accompanied 

by her son, Jonathan Platt, Encino, California ................................................. 12 

APPENDIX 

PREPARED WITNESS STATEMENTS

Paul Sparks, Actor, New York, New York ............................................................. 28 

Griffin P. Rodgers, M.D., M.A.C.P., Director of the National Institute of 

Diabetes and Digestive and Kidney Diseases, National Institutes of Health, 

U.S. Department of Health And Human Services ............................................. 29 

Charlie Albair, JDRF 2017 Children’s Congress Delegate, Gray, Maine ........... 42 

Lorynn Watt, JDRF 2017 Children’s Congress Delegate, Stroudsburg, Pennsylvania ................................................................................................................. 42 

Angie Platt, Chair Mom of the JDRF 2017 Children’s Congress, accompanied 

by her son, Jonathan Platt, Encino, California ................................................. 43 

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PROGRESS TOWARD A CURE FOR 

TYPE I DIABETES: RESEARCH AND 

THE ARTIFICIAL PANCREAS 

JULY 26, 2017 

U.S. SENATE, 

SPECIAL COMMITTEE ON AGING, 

Washington, DC. 

The Committee met, pursuant to notice, at 9:30 a.m., in room 

SD–106, Dirksen Senate Office Building, Hon. Susan M. Collins 

(Chairman of the Committee) presiding. 

Present: Senators Collins, Scott, Fischer, Casey, Gillibrand, Donnelly, Warren, and Cortez Masto. 

Also present: Senator Shaheen. 

OPENING STATEMENT OF SENATOR SUSAN M. COLLINS, 

CHAIRMAN 

The CHAIRMAN. Good morning. What a wonderful sea of blue I 

see out there. Welcome. 

I am delighted to convene this biennial hearing in conjunction 

with the JDRF 2017 Children’s Congress to examine how Type 1 

diabetes affects Americans of all ages. This is the tenth Children’s 

Congress that the JDRF has held in Washington, DC, and it is the 

ninth that I have chaired. It is such a privilege to work with JDRF, 

whose commitment to finding a cure is unwavering. 

Let me welcome our distinguished witnesses and the more than 

160 delegates who have traveled here from every state in the Nation and from around the world to this year’s Children’s Congress. 

We are really glad to have you here. 

[Applause.] 

The CHAIRMAN. Thank you for coming to share your personal stories and to tell Members of Congress what it is like to live with 

diabetes, just how serious it is, and why it is so important that 

Congress fund the research necessary to discover better treatments 

and, ultimately, a cure. 

I want to give a special shout-out to the two delegates from the 

great State of Maine: Charlie Albair of Gray, who we will hear 

from later, and Brady Chappell of Naples. I am so proud that you 

are here representing our state. 

We also will be joined shortly by our colleague Senator Jeanne 

Shaheen, who joins me as the Co-Chair of the Senate Diabetes 

Caucus. She has been a strong advocate for those living with the 

disease, including her own granddaughter. 

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Since founding the Senate Diabetes Caucus 20 years ago, I have 

learned a lot about the difficulties and, at times, heartbreak that 

this disease causes for so many American families as we await a 

cure. 

Diabetes is a lifelong condition. It does not discriminate. It affects people of every age, race, and nationality. It also takes a 

major financial toll. The devastating disease costs our country an 

estimated $240 billion a year—a cost that is skyrocketing and is 

projected to reach more than $490 billion by the year 2020. Treatment of diabetes accounts for one out of three Medicare dollars. In 

fact, medical costs for Americans with diabetes are more than double those incurred by individuals without diabetes. 

The statistics are pretty overwhelming. But the burden is particularly heavy for individuals with Type 1 diabetes. Usually diagnosed in childhood or adolescence, Type 1 diabetes is a lifelong disease that, to date, one can never outgrow. 

Thankfully, there is good news for people with diabetes. Since I 

first started the Diabetes Caucus, funding for diabetes research has 

more than tripled. It is now about $1 billion a year. As a result, 

we have seen encouraging developments in the management, treatment, and potential cures for Type 1 diabetes. 

One program in particular at the National Institutes of Health 

has led to phenomenal discoveries, and that is the Special Diabetes 

Program. This critical program provides an extra $150 million a 

year for Type 1 diabetes research, and that is in addition to the 

regular NIH appropriation for diabetes research. 

Last year, the Special Diabetes Program led to the development 

of the first-ever, FDA-approved artificial pancreas, which can control blood glucose levels automatically and will revolutionize diabetes care. So the Special Diabetes Program is changing the future 

of diabetes. 

You know, when I first held these hearings, there was not even 

a very usable pump. Now we have a really small pump. How many 

of you wear a pump? Look at that. Wow. 

Now, are any of you involved in the clinical trials for the artificial pancreas? All right. That is wonderful. Well, I think that that 

holds such great promise. 

And today you will hear from some of our witnesses about how 

truly life-changing these innovative technologies can be. Other advances in technology, like continuous glucose monitors, are helping 

patients better control their blood glucose levels, and you know 

that that is key to preventing diabetes complications. 

So what is our task? This year, we must pass legislation to extend the Special Diabetes Program because, otherwise, it will expire in September. Are you all on board with that? 

[Applause.] 

The CHAIRMAN. So the great news is due to the efforts that all 

of you have been making. Seventy-five senators signed a letter that 

I led in September urging that this federal investment continue. 

Seventy-five senators out of 100. You hardly get 75 senators to 

agree on anything nowadays. 

[Applause.] 

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The CHAIRMAN. So with the continuation of this investment, we 

can see a future in which all the children who are here today can 

look forward to a better and brighter tomorrow. 

It is so inspiring for both Senator Casey and me and for all those 

who will be joining us to look out and see that wave of Carolina 

Blue—each of you personally affected by diabetes. But let me just 

end by taking a moment to remember a personal hero—and we 

have put up her picture on the screen—who worked so passionately 

on behalf of all of you and testified year after year at the Children’s 

Congresses in the past. 

Mary Tyler Moore endured the ups and down of Type 1 diabetes 

for many years, but she did not complain. She focused her energy 

on finding better treatments and a cure to improve the lives of all 

of you. So we will honor Mary’s legacy by continuing the work to 

which she committed so much of her life. 

Again, thank you all for joining us from all over the country, and 

I am now very pleased to turn to our Ranking Member, Senator 

Casey, for his statement. Thank you. 

[Applause.] 

OPENING STATEMENT OF SENATOR ROBERT P. CASEY, JR., 

RANKING MEMBER 

Senator CASEY. Let us hear it for Senator Collins, our Chairman. 

[Applause.] 

Senator CASEY. We do not get a chance to do that very often. I 

am grateful you participated in that. We do not do it enough, but 

we do want to thank Chairman Collins for having the hearing and 

also for her years and years of work on these issues. And we are 

grateful that you all are here to help us this year. 

We are also pleased that we will have the Co-Chair of the Diabetes Caucus, Senator Shaheen, to participate in our hearing today. 

That is unusual, when you are not a member of a committee to be 

part of another committee hearing. So we are grateful that she is 

willing to spend that time and to do that work. 

We are also pleased to have so many delegates here of the JDRF 

Children’s Congress to help us in the Senate to get this message 

out and to work with us. It is so important that you have joined 

us today because finding a cure for Type 1 diabetes requires a combined effort from people of all ages and all backgrounds. Thanks to 

the delegates for advocating for the Special Diabetes Program. 

Each of you, each delegate here will be more persuasive than I 

will be in making the case. That is why it is so important that you 

are here today. Please continue to tell elected officials, not only 

here in Washington but around the country in your own communities and your own states, why research funding matters. 

Investing in research has led to the development of the artificial 

pancreas. Investing in research means a lot of you do not have to 

use needles to track your blood sugar levels. Investing in research 

also means that your diabetes has not stopped you from going to 

camp or playing outside at recess or riding a bike or doing so many 

other things. These are just a couple of examples of the success of 

the Special Diabetes Program and what can be accomplished when 

Congress fully funds our promise to fight Type 1 diabetes. 

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You are also here during an important debate about health care. 

So, in addition to telling those of us on the Committee and in Congress about the importance of this program, it is important to explain why health insurance matters, why Medicaid and CHIP are 

so important to you and your families. 

We must ensure that people who have Type 1 diabetes are not 

denied care or asked to pay more for their care. That used to happen once in a while around here when people would make those arguments, but too often lately those arguments have not been made. 

We want to ensure that when you get older you can access care 

that is affordable as well. 

The Senate health care bill, in my judgment, could lead to higher 

costs for individuals and families in this room. 

I am pleased that our witnesses are here today with us. 

In my case, because I represent the State of Pennsylvania, I am 

grateful to welcome Lorynn to the witness table and grateful for 

her testimony and also grateful that she is willing to share not only 

why research is so important, but why affordable care is as well. 

Max and Ryan—if you can put your hands up—are also Pennsylvania delegates. Thank you to Max and Ryan for being here as 

well. 

So we look forward to hearing from Lorynn and the other witnesses. We are grateful that each of you is here to provide testimony. And I look forward to working with Chairman Collins and 

others to ensure that the Special Diabetes Program continues in 

2018 and beyond. And I am convinced that together we can turn 

Type 1 into type none. 

Thank you. 

[Applause.] 

The CHAIRMAN. Thank you very much, Senator Casey. 

I also want to acknowledge the presence of Senator Fischer from 

Nebraska. Senator Warren and Senator Gillibrand from Massachusetts and New York will be back shortly. 

And we now get to hear from the stars of the show, and that is 

our panel of witnesses. And it is appropriate that I use the word 

‘‘star’’ because our first witness is actor Paul Sparks. Paul is known 

for his roles in the HBO series ‘‘Boardwalk Empire’’ as well as the 

Netflix series ‘‘House of Cards.’’ And no—Washington really is not 

like that. 

[Laughter.] 

Mr. SPARKS. I did not think so. 

The CHAIRMAN. I want to go on record. 

[Laughter.] 

The CHAIRMAN. Paul was diagnosed with Type 1 diabetes at the 

age of 28, and he has since been a powerful advocate for JDRF and 

for those with Type 1. And I think that is the starring role that 

he is probably most proud of. 

Second, we will hear from Dr. Griffin Rodgers, the Director of the 

National Institute of Diabetes and Digestive and Kidney Diseases 

at the National Institutes of Health. Dr. Rodgers has testified before us so many times, and I always look forward to hearing his 

update. I know how talented and committed that he is. 

And, of course, I take special pleasure in welcoming our witness 

from the great State of Maine, Charlie Albair. Charlie is 10 years 

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old and was diagnosed with Type 1 at age 6. Nevertheless, be careful because he has a red belt in the martial arts. He also plays football, baseball, and basketball. He has been active in his community, raising awareness about what it is like to live with Type 1 diabetes. 

I am now going to turn to our Ranking Member to introduce our 

witness from Pennsylvania. 

Senator CASEY. Thanks very much, Chairman Collins. I was 

mentioning before that one of our witnesses is from Pennsylvania: 

Lorynn Watt. Lorynn is 17. She is a rising senior from 

Stroudsburg, Pennsylvania, up in northeastern Pennsylvania near 

where I live. And despite living with Type 1 diabetes since the time 

she was 9, Lorynn, like all of the delegates before us, has not let 

the disease slow her down or stop her from pursuing her goals. 

Along with her regular academic work as a high school student, 

she is very involved in extracurricular activities. For example, in 

the upcoming school year, she will be directing the school play, participating in the Community Service Club, and serving on the Prom 

Committee. So that is a pretty busy schedule coming up. 

Lorynn, thank you for making the time in your schedule to become active in JDRF and advocating here in Washington on behalf 

of your peers. We look forward to your testimony. Thank you. 

The CHAIRMAN. Finally, we will hear today from Angie Platt. 

Angie serves on the board of the Los Angeles Chapter of JDRF as 

well as JDRF’s International Board of Directors. But her impressive work does not end there. She is also the mother of Jonathan, 

who accompanies her as a witness today, and we welcome you 

back, Jonathan. 

He was diagnosed with Type 1 at age 6, but that has not held 

him down at all. In fact, I am told you are six-five—is there any 

truth to that?—at age 14. Outside of being an advocate, Jonathan 

is an impressive athlete and was a participant in the artificial pancreas trial. So we are really looking forward to your testimony. 

And I also want to acknowledge that we have been joined by our 

colleague Senator Donnelly from Indiana, who is here today. 

You will see senators in and out because of their schedules, but 

believe me, they care a lot about this issue. 

So we will now start with Mr. Sparks. 

STATEMENT OF PAUL SPARKS, ACTOR, NEW YORK, NEW YORK 

Mr. SPARKS. Thank you, Chairman Collins, and thank you, Ranking Member Casey, and the members of the Committee for inviting 

me to testify here today. I am totally nervous, but it is a really big 

honor for me to be here. 

I will just start by saying that I know how important the research supported by the Special Diabetes Program is because in my 

own lifetime personally, as a person with Type 1 diabetes, I have 

seen and I have benefited from the advances discovered in our labs 

and clinical trials and brought to market. 

I was diagnosed with Type 1 diabetes when I was 28 years old. 

I was living in New York, working as an actor—which is code for 

I was living in New York working as a construction worker trying 

to be an actor. 

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Over the course of about 7 or 8 months, I lost close to 40 pounds. 

I had to go to the bathroom all the time. I had cramps constantly. 

I was thirsty, hungry, starving. I could not see very clearly. I 

mean, my body was completely falling apart. 

Luckily, I went home to Oklahoma to visit my parents, but I was 

so thin, so grim, looked so unhealthy that my mother and father 

almost had a heart attack when they saw me. 

Luckily, my brother was a medical resident at OU, Oklahoma 

University, and over the phone I talked about symptoms. And he 

said, ‘‘Well, get to a doctor because it sounds like you may have 

Type 1 diabetes or diabetes.’’ I went the next day, and he was 

right. Thanks, David. 

I spent the next few months or years trying to learn about T1D, 

trying to learn and figure out how to get care for myself, learn how 

to care for myself. 

As the kids in this room and the parents know, this is a very 

anxiety-producing disease. You are the patient, but you are also 

sort of the caregiver. You have to do it yourself. You take care of 

yourself. You listen to yourself. You are responsible for keeping 

yourself healthy in many ways. And you have to stay on top of it 

because if you do not, you will get very sick, as you guys know, or 

worse. 

That is why the research and the advances in care are so important. Today, nearly 20 years after my diagnosis, I use an inhaled 

insulin that quickly and safely brings my blood glucose back into 

range. I wear a continuous glucose monitor, which is awesome, and 

it allows me to know at all times what my glucose levels are so I 

do not go too high and I do not go too low. These advances have 

transformed my life. 

I used to have to stash sugar when I would do a play on the 

stage somewhere in case I needed to stabilize my blood glucose. I 

can tell you that it is a pretty strange moment when an 18th century period drama character pulls a bottle of Tropicana orange 

juice out of a sofa cushion and starts drinking it mid-dialog. 

But probably the most demonstrative example that I have experienced of how important these advances are: About 3 years ago, I 

turned my CGM off at night before I went to bed so that my very 

pregnant wife at that time, Annie—who is sitting right there with 

that little kid who was inside of her—could sleep peacefully 

through the night. She was struggling to do that because she was 

about 8 months pregnant, because the glucose monitor beeps when 

your blood sugar goes low. Well, because it was off, it did not beep 

when I went low, and I had a really severe low. And in the morning, they could not wake me up. And when I finally did wake up, 

I was standing in the presence of a very terrified pregnant woman 

and a crying 4-year-old boy, who has green hair right over there, 

and seven New York City EMTs. 

These technologies, like the CGM, when they are turned on, and 

other research advances literally save my life every day. They save 

the lives of all these delegates. We are on the cusp of a new generation of therapies and devices and, hopefully, a cure. 

That is why we cannot let up on this research. We need more advances. We need to cure and prevent Type 1 diabetes so all of us, 

like Charlie and Lorynn and Jonathan who are sitting here, and 

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all these kids, can live a life without thinking about the disease all 

the time. 

We need to keep the momentum going. We need to renew the 

Special Diabetes Program before it expires at the end of September. 

I am going to let the other people talk about the science and the 

policies that support it. But let me just say this: This research has 

made a difference in my life. It has made a difference in the lives 

of all these people in this room, and millions of people all over the 

United States. 

So thank you, seriously, thank you, Chairman Collins, for your 

outstanding leadership, and thank you, Ranking Member Casey, 

for your support of T1D research and coverage for technologies like 

the continuous glucose monitor. It is great that people on Medicare 

can get it just like the rest of us. 

Thank you and your colleagues for their bipartisan support of the 

Special Diabetes Program. It is doing great work for everybody. 

Thank you. 

[Applause.] 

The CHAIRMAN. Thank you so much for your testimony, Mr. 

Sparks, and for your willingness to take the time out of your schedule to be with us today. 

You mentioned the continuous glucose monitor, and Senator 

Shaheen, who has joined us and, as I mentioned earlier, is CoChair of the Diabetes Caucus, and I had to push so hard for CMS 

to cover that for people on Medicare. We are still having a problem 

with the Omnipod, but we are not giving up on that either. 

Dr. Rodgers, thank you for being here. 

STATEMENT OF GRIFFIN P. RODGERS, M.D., M.A.C.P., DIRECTOR OF THE NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES, NATIONAL INSTITUTES OF 

HEALTH, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Dr. RODGERS. Thanks so much. Chairman Collins, Senator 

Casey, and members of the Committee, thank you for your invitation to testify today. 

Type 1 diabetes is a lifelong disease that affects Americans of all 

ages, including seniors. And on behalf of the National Institutes of 

Health, I am pleased to report that our research investments continue to improve the lives of people with Type 1 diabetes. Through 

coordinated efforts with research partners, such as the JDRF, the 

ADA, the Helmsley Charitable Trust, as well as the support of the 

special statutory funding program for Type 1 diabetes, we are helping the children here today and all people with Type 1 diabetes live 

longer, healthier lives. 

Since I last testified before this Committee two years ago, significant scientific progress has been made that is putting us closer to 

the goal of preventing, treating, and ultimately curing Type 1 diabetes and its complications. These advances are really the fruits of 

the long-term sustained investment of the Special Diabetes Program in Type 1 diabetes research and a preview of what we hope 

will come as a result of those efforts. 

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First, I would like to just acknowledge the important contribution of my fellow witnesses. 

Paul Sparks, you are a tireless advocate not only for a future 

cure but for improving people’s lives today. 

Charlie Albair and Lorynn Watt, your commitment to educating 

others and raising awareness about Type 1 diabetes is truly outstanding. 

And, Jonathan and Angie Platt, I am happy to be able to share 

the table again with you. Without participation of you and others 

in clinical research, we would not be where we are today. 

I would also like to thank those here today representing Americans of all ages. This is so important for people with Type 1 diabetes. 

I would say that the outlook for people with Type 1 diabetes is 

better than ever, and one of the main reasons is the evolution of 

the artificial or bionic pancreas technology. This device measures 

blood sugar levels and automatically administers insulin and can 

help people with Type 1 diabetes achieve better blood sugar control 

and avoid the episodes of hypoglycemia, as Mr. Sparks just talked 

about, or dangerously low blood sugar levels. 

As you have heard, a significant milestone was achieved last fall 

when the FDA approved the first commercial hybrid artificial pancreas device, and NIDDK supported early research that contributed 

to the development of the approved device and continues to vigorously support research at all stages to advance this technology. 

The FDA-approved device is a first-generation device for people 

age 14 and older. It partially automates blood sugar sensing and 

insulin administration, but still requires users to count and enter 

mealtime carbohydrates. 

Numerous improvements are on the horizon to more fully automate artificial pancreas technology, to make the devices simpler 

and more user friendly, to personalize care, and to bring this technology to all. 

For example, the first at-home study of a bihormonal pancreas 

system—one which delivers not only insulin but glucagon, without 

the need for a mealtime carbohydrate counting—showed it improved blood sugar control better than the conventional insulin 

pump. And the success of this and other studies lay the groundwork for four new Special Diabetes Program-supported clinical 

trials to generate data toward FDA approval of other devices. 

These trials will bring us closer to the goal of having multiple artificial pancreas devices that are FDA-approved for all ages, allowing 

people with Type 1 diabetes, the caregivers, and their health care 

providers to choose the technology that is best suited to their 

needs. 

And although this technology holds great promise as a near-term 

approach to helping people manage Type 1 diabetes, it is not a 

cure. Replacing the destroyed beta cells, which would be a biological cure, is another area of vigorous investigation. And one way to 

do this is through islet transplantation, and I am happy to report 

progress in this field. The NIDDK and the NIAID co-led the Clinical Islet Transplantation Consortium, completed a study of islet 

transplantation without accompanying kidney transplantation in 

people with difficult-to-control Type 1 diabetes despite expert care. 

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This study found two years after the transplantation that more 

than 70 percent of the participants were free of severe hypoglycemia events and had established near-normal control of their 

blood sugar levels and had restored hypoglycemia awareness. 

These findings indicate that islet transplantation is an effective 

treatment for people whose Type 1 diabetes cannot be controlled by 

other means and for whom hypoglycemia events are life-threatening. These results will be the basis of an application to the FDA 

for licensure of a pancreatic islet product for transplantation. 

Now, a current barrier to islet transplantation is the scarcity of 

donor islet transplants, and so the NIDDK’s Human Islet Research 

Network, known as HIRN—everything in government has an acronym—is pursuing other strategies for replacing the lost beta cells. 

Small molecules can be made into the form of drugs and hold 

promise for inducing beta cell replication in a patient’s remaining 

beta cells or regenerating beta cells from related cells in the body, 

and HIRN scientists are pursuing these possibilities. 

HIRN has also made exciting progress in identifying biomarkers 

of beta cell loss and developing means to measure these markers 

in people with Type 1 diabetes. These advances can lead to an approach to monitor people at risk for the disease and to diagnose 

Type 1 diabetes much earlier, perhaps when the beta cells are still 

present, and, therefore, they can be prevented from being completely destroyed. 

I am also pleased to report important strides in combating diabetic eye disease. Nearly 35 years after the NIDDK’s landmark Diabetes Control and Complication Trial, or DCCT, began, this study 

continues to provide critical information and insights about reducing the devastating risks of this complication. The study recently 

reported that people who intensively controlled their blood sugar 

early in life are nearly 50 percent less likely to need eye surgery. 

The DCCT scientists also determined that people with Type 1 diabetes should get eye exams to detect diabetic eye disease based 

upon their risk rather than on an automated schedule. So adjusting 

the frequency of eye examination and screening to a more personalized approach will result in fewer eye exams and lower costs and 

quicker diagnosis. 

The Special Diabetes Program also provides significant funds to 

our sister institute, the National Eye Institute, its Diabetic Retinopathy Clinical Research Network, which also continues to report 

significant advances in treating diabetic eye disease. Building on 

the network’s finding that sanative drugs are more effective than 

laser treatment, they compared three of these drugs with widely 

differing costs for treating different people with a certain type of 

diabetic eye disease. The results showed that in people with mild 

vision loss, all three drugs were equally effective after 2 years. 

These results can inform clinical decisions and lead to a more personalized treatment for diabetic eye disease, while having significant cost implications. Importantly, the drugs were found to improve vision, which could be the difference between whether a person can drive or not, greatly affecting the person’s quality of life. 

The network also showed that the sanative is more effective than 

laser treatment for treating patients with a more severe diabetic 

eye disease, so-called proliferate diabetic retinopathy. This result 

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gave people with diabetes and their providers the first new option 

for treating this disease since the 1970’s, four decades. In April, 

based upon these results, the FDA has now approved this drug for 

all forms of diabetic eye disease, extending their previous approval. 

Chairman Collins, Senator Casey, and members of the Committee, thank you for this opportunity to testify before you today. 

The NIH is grateful for the continued support of Congress, for our 

public and private research partners, and for the unwavering efforts of our clinical study volunteers. With the remarkable progress 

already achieved through the support of the Special Diabetes Program and the progress of future biomedical research, it is possible 

to imagine that people will lives free of the burden of Type 1 diabetes and its complications. 

Thank you for your attention, and I am pleased to answer any 

questions you may have. Thanks so much. 

The CHAIRMAN. Thank you very much, Doctor. 

[Applause.] 

The CHAIRMAN. Charlie, you are up. 

STATEMENT OF CHARLIE ALBAIR, JDRF 2017 CHILDREN’S 

CONGRESS DELEGATE, GRAY, MAINE 

Mr. ALBAIR. Chairman Collins, Ranking Member Casey, Senators, thank you for inviting me to speak before you today. 

My name is Charlie Albair from Gray, Maine. I am 10 years old, 

and I will be entering the fifth grade at Gray New Gloucester Middle School. 

I am just like a lot of other kids. I love sports, especially basketball and baseball. And when I grow up, I hope to play in the Major 

Leagues—for the Boston Red Sox. 

[Applause/laughter.] 

Mr. ALBAIR. The one big difference is that I have Type 1 diabetes, or T1D. I was diagnosed with T1D way back when I was 6 

years old. I was in the first grade. I started not feeling like myself. 

I kept asking the teacher to go to the bathroom because I really, 

really had to. She got angry at me because she thought I just was 

trying to skip class. 

She felt bad when she found out the real reason. 

At first I was kind of confused when I was diagnosed. I did not 

know what it was; ‘‘diabetes’’ was a big word for a first-grader. 

In the beginning, we treated my diabetes with syringes. And a 

half a year later, I got the Omnipod pump and then a CGM to monitor my sugar levels. I love it. 

I do not have to be constantly stabbing myself with a needle five 

or ten times a day. 

What does this mean for me? 

When I first found out I had diabetes, I remember thinking that 

this would change my whole life. I thought that I would not realize 

my dream of being a sports star. 

Now I can realize I can do whatever I want. 

Sometimes my Omnipod or CGM beeps in class, and the other 

kids say, ‘‘Charlie, stop making noise.’’ I just tell them that that 

is my natural ‘‘robot’’ noise. 

[Laughter.] 

AGING-G33-GPO with DISTILLER

11 

Mr. ALBAIR. The pump and CGM are so much a part of me. But 

I do wish that they did not have to be. 

I want my disease to go away—for me and all the other kids who 

suffer from it. I want us all to be able to live without thinking 

about it. 

That is why I am here. 

We need money for research. 

We need money so scientists can invent new pumps and monitors 

better than what we have now and so they can come up with a cure 

for T1D. 

You have supported kids like me for so many years, and all I ask 

is that you continue to do so. And if you do, I will invite you to 

a game when I am on the Red Sox. 

[Laughter.] 

Thank you. 

The CHAIRMAN. Thank you, Charlie. 

[Applause.] 

The CHAIRMAN. I cannot wait to see you playing at Fenway Park. 

I will be there. 

Lorynn, welcome. 

STATEMENT OF LORYNN WATT, JDRF 2017 CHILDREN’S 

CONGRESS DELEGATE, STROUDSBURG, PENNSYLVANIA 

Ms. WATT. Hi. Chairman Collins, Ranking Member Casey, Senators, thank you so much for inviting me to talk with you today. 

My name is Lorynn Watt, as we have established. I am 17 years 

old, and this fall I will be a senior at Evergreen Community Charter School in Cresco, Pennsylvania. 

When I was 9, I was diagnosed with Type 1 diabetes. I remember 

sitting on my parents’ bed, just about a week before Halloween, as 

my Mom and step-dad told me that I had T1D. That day they loaded me into the car and took me to the hospital, where I would learn 

to care for myself. 

At that point, I only knew about diabetes from an episode of 

‘‘Hannah Montana’’ I saw just before I was diagnosed. That was it. 

What I did know was that I was scared and felt awful, and all of 

a sudden I was living a life where I had to inject myself with insulin multiple times a day, even though I was horrified of needles. 

Then at 14, I got a continuous glucose monitor, or CGM, and an 

insulin pump. It made my life so much easier. Now, all I have to 

do is look at my phone—which kids my age do anyways—and I can 

see my blood sugar. It has been life-changing, and I hope this, the 

artificial pancreas, and other advances are small steps toward a 

cure. 

I have heard every year since I was diagnosed that in 5 years 

there will be a cure. I have had this disease for almost 8 years, and 

you know, I am no mathematician, but I think we are behind 

schedule. 

I believe that with your help we can have a cure. After all, we 

have come so far. 

I know this because my biological father also had T1D. He was 

not in my life much, and he did not have great care—no pump or 

CGM or even the ability to check his blood sugar every day. 

AGING-G33-GPO with DISTILLER

12 

So he lost his foot and then his eyesight and then the use of his 

kidneys. He had to get a stent in his heart. And he died less than 

a year after my own T1D diagnosis, at just 38 years old. 

I am here today asking you for more support and more funding 

for more research because no one should have to suffer and lose 

their life because of T1D. 

I am here, inspired by his memory, and determined that none of 

the kids here today or sitting in a hospital room—I am sorry—— 

[Applause.] 

Ms. WATT [continuing]. Or sitting in a hospital room right now— 

scared—as they get their diagnosis, will have the same fate as my 

father. 

With your help, I know we can do it. I know we can find a cure. 

Thank you. 

The CHAIRMAN. Thank you, Lorynn. 

[Applause.] 

The CHAIRMAN. Thank you so much. I know that was really hard, 

but your story really inspires us to work even harder. 

Mrs. Platt, I know you are speaking on behalf of yourself and 

your son. We would love to hear your testimony. 

STATEMENT OF ANGIE PLATT, CHAIR MOM OF THE JDRF 2017 

CHILDREN’S CONGRESS, ACCOMPANIED BY HER SON, JONATHAN PLATT, ENCINO, CALIFORNIA 

Ms. PLATT. Chairman Collins, Ranking Member Casey, Senators, 

thank you for inviting me to speak with you today. 

I am Angie Platt from Encino, California. My husband, Jon, and 

I have three children, all boys: twin 4-year-olds, and this is our oldest son, Jonathan, who is 14 years old. 

It is hard for me to believe that this, like you said, six-foot-five 

young man sitting next to me is the same boy who was here for 

JDRF’s 2011 Children’s Congress. He was only 7 years old at the 

time, just two years into his diagnosis. 

If you watch Jonathan play in his competitive basketball tournaments, it would be very hard to believe that he is a child living 

with Type 1 diabetes. 

I am here today to tell you and your colleagues that Jonathan 

is living proof that your leadership and actions have made a real 

difference in the lives of Jonathan and the lives of all the people 

with Type 1 diabetes. 

In 2011, when Jonathan was here, the Type 1 diabetes community was asking for your help, and, Senators, you gave it. The Special Diabetes Program has provided hundreds of millions of dollars 

of crucial funding for a range of therapies and investigations, including the artificial pancreas. 

In April 2016, Jonathan was enrolled in the pediatric trial for the 

Medtronic Hybrid Closed Loop 670G—otherwise known as the ‘‘artificial pancreas.’’ We felt as if we had won the diabetes lottery 

when Jonathan got a spot on that trial. 

This device has given Jonathan better blood sugar control than 

he has ever had in his diabetic life, and it gives our family some 

desperately needed peace of mind. In the past, we would wake up 

and check Jonathan’s blood sugar at minimum three times a night, 

similar to the parents behind me and the parents at home caring 

AGING-G33-GPO with DISTILLER

13 

for children with Type 1 diabetes. Jonathan used to have to stop 

practicing with his team or even sit out in games because his blood 

sugar levels were too erratic. Now he gets to play right through 

crunch time, and we are so thankful for that. 

As you know, last fall the FDA approved this artificial pancreas 

system. And, Senators, let me be clear: This would not have happened without your help and without the support of the Special Diabetes Program. 

Diabetes is relentless. We all work so hard. We are so responsible. We are playing by all the rules. Jonathan is on the latest and 

the most advanced technology, and he doing everything right. 

But the ugly reality of diabetes is that, as hard as we work, our 

kids are still vulnerable. This past June at Jonathan’s eye exam, 

it was discovered that Jonathan has three dot hemorrhages. Children with Type 1 diabetes at the age of 14 should not be diagnosed 

with diabetes complications. And, quite frankly, there are kids who 

are a lot worse off than Jonathan, and those of us who are sitting 

here are among the lucky ones. 

I know that we have made progress, and my son is wearing the 

very first artificial pancreas system approved in the world. But this 

disease does not stop, and so we cannot stop. 

We need the next generation of devices that can fully automate 

insulin delivery. 

We need to ensure that progress continues in the area of diabetes 

complications. 

We also need to prevent others from ever developing Type 1 diabetes, including my twin sons, Jonathan’s brothers, who are at a 

higher risk of developing Type 1. They are enrolled in TrialNet, a 

Special Diabetes Program-funded prevention program. 

The Special Diabetes Program has done so much, but as you 

said, it will expire on September 30th. The SDP gives me so much 

hope, but it needs a hero. We need you Senators and your Senate 

colleagues to renew it for another three years so researchers can 

continue their great work. 

Senators, I want to thank you for all that you have done to make 

my family’s life and the lives of all of us here today, and the lives 

of all of those back at home better. Senator Collins, I particularly 

want to thank you for your steadfast commitment and outstanding 

leadership to advance Type 1 diabetes research and to help people 

gain access to new technologies. You have been a champion of us 

for a long time. 

Look at Jonathan. He will not lose to Type 1 diabetes. 

We will fight alongside him. We will fight alongside all these 

kids before you, and we will fight alongside all the kids at home. 

I ask that you please continue to fight alongside with us. Thank 

you. 

[Applause.] 

The CHAIRMAN. Thank you all for such inspiring testimony. I 

know that it is hard to share your personal stories, and it makes 

such a difference because then it puts a human face on the disease, 

and that is what we need as we advocate for more money. 

I want to start with Dr. Rodgers because I know that you will 

remember that 10 years ago, in September 2006, I chaired a hearing, the Children’s Congress, and the topic was the artificial panAGING-G33-GPO with DISTILLER

14 

creas. And it was like something way in the future, but what a difference it would make. And it is so exciting when I learned of the 

FDA’s decision last fall to see the progress that we have made. So 

I know that it seems hard for those of you, particularly those of you 

who are newly diagnosed, but the amount of progress in the 20 

years that I have co-chaired the Diabetes Caucus really is encouraging. And we are going to keep working on that. 

I also love, Dr. Rodgers, that you called it, instead of the artificial pancreas, the ‘‘bionic pancreas.’’ I think I will adopt that term 

from now on. But I want to point out that the Special Diabetes Program has been critical to achieving many of the advances you described and was the program that spurred the development of the 

artificial pancreas technology. 

What additional advancements is the Special Diabetes Program 

supporting that are in the pipeline now? Is the islet transplantation part of that? 

Dr. RODGERS. Absolutely, Senator. In fact, I remember vividly. 

That is about 10 years ago, and that was actually the first year I 

was the Director of the Institute, and you really challenged us to 

move forward with this artificial pancreas. And it seemed at that 

time to sort of be a dream, but here we are. 

What I can tell you is that we are actually even moving much 

further along in that regard with the bionic artificial pancreas. 

With the current funds that are remaining in the Special Diabetes 

Program, we are actually just launching four new clinical trials toward FDA approval of the artificial pancreas device, and one of 

these trials, I have already begun recruiting patients. These trials 

will be testing, for example, the combination of insulin and 

glucagon, as I mentioned, a bihormonal therapy led by researchers 

at Boston University. 

There is a trial that is underway at the University of Virginia 

which is developing an intraoperative system. We understand there 

are going to be advances in the infusion technology as well as the 

sensing technology. This system will be a plug and play where it 

does not matter which of these devices really moves forward. This 

system will test that interoperability, and that is at the University 

of Virginia. 

There is a third, which is the trial that is currently recruiting patients. That is led by investigators at the University of Cambridge 

in England, and they will test an artificial pancreas specifically in 

youth. As I said, the current device is for kids 14 and older. This 

is looking at a much younger pediatric group to determine its efficacy. 

Then the fourth trial that we are funding is led by an international diabetes center in Minneapolis and the Schneider Children’s Medical Center in Israel, and they will be testing the next 

generation of this currently approved device to determine its efficacy in a broader group. 

The HIRN that I mentioned has also been spurred on by the Special Diabetes Program, and being able to develop a way to take the 

patient’s cells from their skin and to induce them to actually become glucose-responsive beta-type cells and to expand them for potential transplantation is really going to be a great advance. And 

AGING-G33-GPO with DISTILLER

15 

we are well along the way with that with the additional and continuous funding of this Special Diabetes Program. 

Having these cells available—and I do not want to go on very 

long, but it will also give us another advantage, because one can 

take these cells and culture them in a dish and put them on a chip, 

and this chip now, with the patient’s own cells, can actually determine the effectiveness of certain drugs, for example. In this way, 

you can envision making therapies even more personalized. 

So those are just a few of the many things that have been 

spurred on and we hope will continue with the Special Diabetes 

Program support. Thank you. 

The CHAIRMAN. Thank you. 

Charlie, how does having Type 1 affect you when you are playing 

sports, when you are on the court or in the field? 

Mr. ALBAIR. Well, sometimes if my Dexcom says I am low, I have 

to just run out onto the sidelines, take sugar, and then wait however long I need to. And then when I go up, I can go back out and 

play. But the normal blood sugar that my parents want it at is 160 

to 170 because it is a lot of running around, so it could make me 

go low, and there is a lot of adrenalin, so I could go high. And it 

is just hard because we do not know what way I am going to go, 

down or up. 

The CHAIRMAN. That must be hard to constantly monitor it, and 

yet pay attention to the game, too. But it sounds like you do a 

great job doing both. 

My time has expired, so Senator Casey. Thank you, Charlie. 

Senator CASEY. Thanks, Chairman Collins. 

I want to thank all the witnesses for being here. Your testimony 

is very compelling, and that is the kind of testimony that will help 

us win some of these legislative battles. So we are grateful you are 

willing to do that, and I extend that to all of the delegates. In your 

own ways, you will all be witnesses to bring testimony to individual 

Members of Congress. 

Lorynn, I am especially grateful that you are here representing 

our state. I do have one brief suggestion. Just a thought. You do 

not have to answer. I know you are busy with the Prom Committee 

and all those other activities, but you are going to finish high 

school with great grades. You are going to go to college. My suggestion is become a lawyer, then become a sports agent, and get Charlie and Jonathan to play for the ‘76ers. OK? 

[Laughter/applause.] 

Senator CASEY. We could use the help. 

[Laughter.] 

Senator CASEY. But, Lorynn, thank you for sharing your story 

about your dad and about your own life. It is those stories that 

move the needle on these public debates. All of us will continue to 

make arguments. We will make speeches and all of that. If you are 

Senator Collins, they usually work out better than the rest of us. 

We know we are going to need you. 

I guess the one question I had is: You have got, obviously, the 

benefit, and so many do, of new technology, and that is something 

to be positive about. And I guess part of the benefit of that is it 

has helped you to manage your own condition. But tell me a little 

bit more about how it has made your life better both at school and 

AGING-G33-GPO with DISTILLER

16 

at home. If you can just kind of walk us through part of your day 

or give us a sense of what it is like every day. 

Ms. WATT. Well, a major part of it is sleep. I like to sleep, and 

I did not really get to do that a lot before, because my Mom would 

come in three times a night, four times a night, depending on how 

that day is going, and check my blood sugar for me, to the point 

where I would just sleep through it because it just became like 

clockwork. 

But, you know, it is really cool to be in class, and all of my teachers know that I have Type 1, and so I am allowed to have my 

phone on the desk. And so I can look at my phone, and, you know, 

if I see that I am high, I can take my insulin with my pump without having to run to the nurse and do a shot. I do not really need 

to do a finger stick right away. I have time. And if I see I am low 

or if I am going down, I have the ability to treat it before it becomes a real problem for me. And so it has been really helpful. I 

am really grateful. 

Senator CASEY. Well, that helps us as well to be able to give folks 

a sense of the challenge that you face every day. 

Another issue that I wanted to raise is part of the debate we are 

having right now about programs like Medicaid. We know that living with T1D—and it is nice to have an acronym for that, too. I 

guess as we said, we have lots of acronyms. But living with T1D 

presents lots of challenges. One of the challenges, of course, is making sure that the services are there. Whether it is insulin or doctors’ visits, to technology, technology like the continuous glucose 

monitor, those are significant costs. And I know that a lot of families here benefit not only from coverage, but I guess, Lorynn, in 

your case, in terms of what your Mom gets from work, that impacts 

you as well. Can you talk about that in terms of the coverage? 

Ms. WATT. I do not know a lot about that, just because I am a 

minor, so I am not allowed to deal with a lot of that. 

Senator CASEY. Right. 

Ms. WATT. I do know that the ability to afford the technology I 

have is really great because a lot of people cannot afford $14,000 

out-of-pocket for an insulin pump and a CGM. So the fact that we 

have the insurance, you know, even like a vial of insulin is about 

$300, and I am using about three a month. We do not have $900 

a month to put toward insulin. So having the ability to know that 

that is going to be there and we are not going to have to worry is 

really relaxing to know. 

Senator CASEY. Well, we will have to bring you back here when 

we are debating the budget with regard to NIH research dollars. 

So thanks for your help. 

Ms. WATT. Thank you. 

The CHAIRMAN. Thank you. 

Senator Donnelly? 

Senator DONNELLY. Thank you, Madam Chair. And I want to 

thank all of you for coming to the Congress today. To my Hoosier 

friends, Becca and Katie and everyone else, we are so excited that 

you are here. It is awesome to see all of you. 

Charlie, my dream in life was to be a Major League baseball 

player, but I could not hit a curve ball, so my recommendation to 

you is spend a lot of time in the cage. And, actually living not too 

AGING-G33-GPO with DISTILLER

17 

far from Chicago, it is difficult to root for the Red Sox. However, 

when you get to Fenway, I will come and watch you play, and it 

will be awesome to see that. 

And to Jonathan, I am a Notre Dame graduate and would be 

happy to put you in touch with the basketball coach. 

[Laughter.] 

Senator DONNELLY. It could be a win-win situation, my friend. 

Dr. Rodgers, you talked a bit about the successful clinical trials 

on artificial pancreas technology, and we have all been very interested in this. Could you tell us about the future and how you think 

this is going to go from clinical to products in the market and 

where we are headed? 

Dr. RODGERS. Sure. Thank you, Senator, and, again, thank you 

for all your support. I think, you know, again, this next generation, 

our goal is really to provide patients and their families with options. And while this has really been quite successful, getting this 

first artificial pancreas approved by the FDA, as you have heard, 

it still has limitations. And so really the purpose of these four trials 

that I just outlined a moment ago is to provide people with even 

more options, something that is more—— 

Senator DONNELLY. You are still in effect flooding the zone, so 

to speak, to put as many lines out there as you can. 

Dr. RODGERS. Exactly right. And as I said in my opening remarks, you know, even having these available, it is still not a cure. 

And so we really have to make sure that we look at ways of replacing those cells that have been damaged. Ideally, actually determining the disease so early in people who are genetically at risk 

that we can halt the progression of the autoimmune disease and 

then get their own cells to repopulate and regenerate, those islet 

cells produce cells. 

Senator DONNELLY. Now, when you do that, the islet transplantation and the work that is being done on that, would that be like 

a patch that would be used? Or how would it be delivered? And, 

you know, the magic thing that Lorynn was talking about, we are 

always told it is five years every year. 

Dr. RODGERS. Right. 

Senator DONNELLY. Where are we in terms of that? Because I 

know up in Harvard with Dr. Melton they are doing work, and 

elsewhere they are doing work. 

Dr. RODGERS. That is right. They are supported by the Special 

Diabetes Program, and expanding these cells was really a remarkable achievement. I hate to use the word ‘‘breakthrough,’’ but that 

was truly a breakthrough. Being able to take the patient’s own 

cells and expand them in such a fashion is totally outstanding. 

Of course, even if you expand those cells and transplant them 

back in through a variety of ways, you still have to overcome the 

autoimmune disease, and so you could either encapsulate these or 

in some way modulate the autoimmune disease to make sure that 

those cells remain healthy and survive. 

The one aspect I do want to sort of go back to this artificial pancreas is even if we expand this technology and really achieve a lot 

of benefits, it really will not be to anyone’s benefit if people do not 

use them. And so we have to make sure that these are readily 

available for a large number of people and for whatever barriers 

AGING-G33-GPO with DISTILLER

18 

that there may be to using them that we can overcome that. And 

one of the major things that SDP is doing, we are able to bring people into this field of research who had never envisioned going into 

this—chemical engineers, bioinformaticians, computer scientists, 

people who are involved in psychology to try to determine how one 

might effectively influence behaviors in terms of using these technologies. So it really does take a large number of people that we 

are just envisioning. 

And then, finally, I just would quickly say that, as you heard, 

even as these technologies emerge, there are still people with the 

disease at risk for developing complications, so we have to put efforts into making sure that the eye disease, the kidney disease, the 

foot ulcers, the heart disease is appropriately managed. And we 

have activities underway to—— 

Senator DONNELLY. Well, I can tell you that on the Special Diabetes Program you have got—what is the term? ‘‘A steely eyed missile commander’’ in Susan Collins and Jeanne Shaheen and Bob 

Casey, and everybody is all in to make sure that is protected. 

And to all of you young people, one of the folks who visited my 

office today is a fellow named Charlie Kimball. Charlie is a young 

man who is an IndyCar driver. Charlie has won IndyCar races. 

Charlie drives around the track at 230 miles an hour. And Charlie 

has Type 1 diabetes and has driven entire races, was ahead in the 

Indy 500 with about 10 laps to go a few years ago. And so any 

dream you have, anything you are hoping for, anything you want 

to accomplish, I think Dr. Rodgers and all of you would say—Dr. 

Rodgers, there is no reason they cannot achieve anything they 

want, is there? 

Dr. RODGERS. Absolutely. 

Senator DONNELLY. Thank you. 

The CHAIRMAN. Thank you very much, Senator. 

Senator Scott? 

Senator SCOTT. Thank you, Chairwoman. And thank you for 

holding such an important hearing this morning. I will always remember growing up in South Carolina with my best friend at the 

time, at 13 years old was diagnosed as a child with juvenile diabetes. And the good news is that at 51 years old—I am dating myself 

at this point. At 51 years old now, Billy is still very healthy. So 

the longevity and the good health is prayerfully in the future of so 

many kids who have juvenile diabetes. 

I do know that we have at least three delegates from South Carolina. If you are here, please stand up. Cameron. Is Cameron here? 

Or Julian? 

The CHAIRMAN. Right here. 

Senator SCOTT. A tall youngster. And Riley? All right. 

[Laughter.] 

Senator SCOTT. Excellent. Are there any other South Carolina 

delegates here? Would you stand up for me, please? Excellent. 

Well, thank you very much for being here. In my previous life before Congress, I served on our local Juvenile Diabetes Research 

Foundation for a short period of time, and I am so thankful to see 

this hearing and hear about the progress being made. 

I thank the panelists for being here to discuss this very important issue as well. 

AGING-G33-GPO with DISTILLER

19 

The CHAIRMAN. Thank you very much, Senator. 

I am now very pleased to call upon the Co-Chair of the Senate 

Diabetes Caucus, who has been a wonderful partner and leader in 

the fight against Type 1 diabetes and in helping us get research 

dollars, and that is my neighbor from New Hampshire, Senator 

Jeanne Shaheen. 

Senator SHAHEEN. Well, thank you very much, Madam Chair, 

and I am honored to serve with you and appreciate the leadership 

that you have provided for so many years in the Senate. We would 

not be here where we are today without your leadership, so thank 

you very much for that. 

I also want to recognize Anna Cook, who is here from New 

Hampshire, and her mother, Amy. Is Anna here in front someplace? Thank you, Anna, for being here. 

And I really appreciate all of you being here because you do not 

know yet how much difference you have made and the Children’s 

Congress has made in advancing research in diabetes. You are the 

best advocates there could be as you fan out and go meet with senators and members of the House to talk about why this is so important, and the stories that you have to tell are what has moved this 

debate. 

I have a granddaughter, Elle, who has Type 1 diabetes. She was 

diagnosed a little after her eighth birthday. She is headed off to 

college this fall with her diabetes service dog, Coach, who went to 

high school with her. He graduated with his own cap and gown. 

[Laughter.] 

Senator SHAHEEN. And he is headed off with her, and he has 

made a huge difference for her. But even Coach has not been able 

to address the kind of issue that you all know about and that Mr. 

Sparks spoke to, where she has on occasion—in fact, just last week, 

she also turned off her CGM, and her mother was not able to wake 

her. And, fortunately, she did not have to go to the hospital. She 

was finally able to get her awake after a lot of carbohydrates. 

So I appreciate and have seen how important the Special Diabetes Fund and the research it promotes is in her life. 

And I hope that as you all go to offices that you will talk about 

this not just in the context of how important it is for you individually and what your stories are like, but you will also let people 

know—oh, we have a diabetes service dog in the audience. All 

right. What is the dog’s name? Gigi? All right. Gigi is great, I bet. 

But that you will let people know that this is also important to 

the policy of this country and to addressing a chronic illness that 

is not going to get any better unless we actually do the research. 

Now, Dr. Rodgers, you talked about the importance of better understanding and diagnosing people who might have a proclivity to 

diabetes so we can address it before it becomes full-blown. Can you 

talk about the connection between gestational diabetes and whether that will then lead to diabetes later in life? 

Dr. RODGERS. Thank you, Senator. Gestational diabetes, which 

is, as the Senator indicated, the type of diabetes that occurs during 

pregnancy, affects some five to seven percent of all pregnancies. In 

certain ethnic groups, it may be as high as 17 percent. As a result 

of NIH funding for this research, we know that the infant born 

during that pregnancy has a higher risk—not only does the mother 

AGING-G33-GPO with DISTILLER

20 

have a higher risk of developing diabetes, but the infant born of 

that pregnancy compared to their siblings in which the mother did 

not have gestational diabetes has an increased risk of developing 

obesity and diabetes. In this particular case, it is Type 2 diabetes. 

Senator SHAHEEN. Right. Thank you. So it would behoove us to 

screen for gestational diabetes in every pregnant mother, right? 

Dr. RODGERS. Absolutely. 

Senator SHAHEEN. Mr. Sparks, you talked about inhaled insulin. 

I have never heard of inhaled insulin. Can you talk about how long 

you have had that and how that is different? 

Mr. SPARKS. Yes, I can. I have been on inhaled insulin. It is 

called ‘‘Afrezza.’’ It has been on the market, I think, for a little over 

2 years. Aaron Kowalski, who is the chief mission officer for JDRF, 

turned me on to it. He said this is something that was going on. 

I know it is not a lot out there, but it is really simple. There are 

no needles. You just have these little pods, and there is a little inhaler device that goes in. I find it to be—look, I do not know the 

science. I am an actor. I do not even play a doctor on TV. 

[Laughter.] 

Mr. SPARKS. But I know that my experience of it is that it is very 

quick acting. It leaves the body very quickly, maybe an hour and 

a half after you use it. It does not store and then sneak up on you 

like later for some unknown reason. And it has been a big change 

for me. I love it. It does not seem to have the same low quality that 

I have had before when I was using vial insulin. So, yes, I love it. 

I sing its praises whenever I talk to anybody. 

Senator SHAHEEN. Thank you. My time is up. Thank you, 

Madam Chair. 

The CHAIRMAN. Thank you. 

Senator Warren? 

Senator WARREN. Thank you, Madam Chair. Thank you once 

again for having this hearing, and thank you, Ranking Member 

Casey. 

I am going to meet with some Massachusetts folks this afternoon, but I do not know if there are any here today already. Well, 

there they are. OK, good. Good. I thought you would be louder than 

that. All right. It is good to see you. I hope I did not wake you up 

over there. OK, good. Good. 

But I am really glad that all of you are here, and I am glad that 

we are getting a chance to talk about Type 1 diabetes and to meet 

some of the people who are speaking out for the one-and-a-quarter 

million Americans who have Type 1 diabetes. 

I know that researchers all across the country are working hard 

to try to understand Type 1 diabetes and to develop better treatments on how to deal with it. There is even some talk of cure. And 

we have made a lot of progress with medicines and innovative devices that I think we have been talking about this morning, like 

insulin pumps and an artificial pancreas and inhalable insulin. 

That all happens because of our investments in biomedical research. But we know there is a lot more to do. 

So, Dr. Rodgers, I know you have already talked some about the 

artificial pancreas and how it has been a game changer for many 

of the people in this room. And you mentioned that NIH funding 

has been critical for several trials that have been able to get you 

AGING-G33-GPO with DISTILLER

21 

in a position to push the envelope on what the artificial pancreas 

can do, including one led by researchers at Boston University and 

Massachusetts General Hospital. And I just wondered if you could 

just say one more word about the work that is being done, there 

in Massachusetts or anywhere else in the country, about how we 

are pushing out on the edges of research for diabetes. 

Dr. RODGERS. Absolutely, Senator. And that work that they have 

done, particularly in Boston—and then I will talk about the other 

places—they really have done some critical pivotal trials sort of in 

the real world. So, for example, they led trials looking at the Beacon Hill area and having people in the community living as normal 

an existence as possible as they were being monitored. They have 

had summer camps for young kids using these, and a lot of these 

were precursors to their current study that is on the way of this 

bihormonal pump, which includes both insulin as well as glucagon 

investigators. 

I had mentioned a little bit earlier but it does bear repeating 

that other investigators are looking at ways with the existing FDAapproved device to expand this in the pediatric population because 

currently it is only approved for 14 years of age. And we know that 

the better control of your blood sugar that you can get early on will 

lead to better improvements or risk reduction in complications later 

on in life. 

Senator WARREN. I appreciate that. I think there are a bunch of 

people here under 14 who are rooting for you to get this done as 

quickly as possible. Are you guys ready for that, ready to do a little 

experimentation? 

[Applause.] 

Senator WARREN. Yes, you have got to help here. 

Now, I want to put in a small plug because this research has 

been made possible by the National Institutes of Health, and it is 

vitally important that it continue, important to everyone in this 

room, important to all of your families, and important to people all 

across the country. 

We are grateful for your work, Dr. Rodgers, and grateful for the 

work of other researchers in this area. But we are also grateful to 

our fellow Americans whose tax dollars help make that research 

possible. And it is the reason that many of us oppose cuts to the 

National Institutes of Health. Even if the Special Diabetes Program is reauthorized, right now there are proposed cuts of over 20 

percent in a single year, and that would knock out the legs from 

underneath the kind of innovation we are trying to build and the 

kind of innovation for new treatments and even cures for diabetes. 

So I just want to make the point that research takes money, and 

we need to support it in a sustained way. I know it is something 

that Senator Collins has been strong on, Senator Casey has been 

strong on, Senator Shaheen, Senator Donnelly. But we are going to 

need all of you to be out there and help support the National Institutes of Health because they support the research scientists who 

are going to make your lives a whole lot better. Thank you. 

Thank you, Madam Chair. 

[Applause.] 

The CHAIRMAN. Thank you, Senator. 

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Before I adjourn the hearing and let all those who are sitting on 

the floor have an opportunity to get up and move about, I just 

wanted to ask Jonathan if he had anything that he would like us 

to know or to tell us about. I do not mean to put you on the spot, 

but since you did not get a chance to talk—I know that you are 

known for having a really positive attitude, and maybe you could 

share that with the other children who are here today. How do you 

keep such a great attitude? Sorry. I think I did put you on the spot. 

[Laughter.] 

Ms. PLATT. How has your device helped with basketball? 

Mr. PLATT. Well, my artificial pancreas has really helped with 

my basketball games because now when I get pulled out of basketball games, I do not always have to check my blood sugar to make 

sure it is ready for me to get back in, because before this device, 

when I was on the CGM and the pump, when I came out of games, 

I would always have to check and make sure it was right. If I was 

high, I would stay on the bench for an extended amount of time 

to make sure I get my mind ready to get back in the game. And 

if I was low, I would not be able to get back in the game at all until 

my blood sugar raised up, which since I was on the court a long 

time running up and down, it normally took a really long time for 

my blood sugar to start getting up. And I would have to wait until 

it got to like 150 in order to get back out, because if I got back on 

at like 120, I would just go low again in a matter of minutes. 

The CHAIRMAN. Thank you. That is really helpful. 

And as I am sure everybody here knows, but maybe not everyone 

watching knows, the artificial pancreas is in the midst of a clinical 

trial for younger children, so that it would be more widely available, and I am really looking forward to the results of that clinical 

trial as well. So thank you for sharing. 

Senator SHAHEEN. Madam Chair? 

The CHAIRMAN. Yes? 

Senator SHAHEEN. Could we ask Jonathan to maybe hold up his 

artificial pancreas? I think a lot of people do not know what we are 

talking about when we say that. 

The CHAIRMAN. Good idea. Wow, look at how tiny it is. That is 

amazing. 

Senator SHAHEEN. Can everybody see that? It is really small. 

The CHAIRMAN. Hold it up high. 

[Applause.] 

The CHAIRMAN. There you go. Thank you. And, Jonathan, you 

now just proved that you really are six-five. 

[Laughter.] 

The CHAIRMAN. So thank you for sharing your personal story, 

and thank you, Senator Shaheen. That was an excellent idea. 

I would like to thank each of our witnesses for being here today. 

You each added so much to our understanding. 

I want to end this hearing for my part by telling you how I got 

involved in this issue. I do not have any family members or close 

friends or relatives with Type 1 diabetes. I do have some friends 

who have it, but what got me involved was 20 years ago, when I 

was a brand-new Senator, and JDRF arranged for me to meet with 

a family who had a 10-year-old son with diabetes. I will never forget his looking up at me and saying that he wished that he could 

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23 

just take 1 day off from having diabetes, his birthday or Christmas. 

And that so touched me that when I came back to Washington, I 

said to my assistant at the time, ‘‘Is there a Diabetes Caucus in 

the Senate?’’ And she said, ‘‘No. Only in the House.’’ And I said, 

‘‘Well, guess what? There is going to be one now.’’ 

[Applause.] 

The CHAIRMAN. And the reason that I share that story with you 

is I want you to know what a difference you make when you come 

to Washington and meet with your Senators and your Members of 

the House. When you tell them what it is like to live with diabetes, 

it really helps us mobilize support for the research dollars that 

have made the artificial pancreas, continuous glucose monitors, 

and better pumps possible. So you and your advocacy make such 

a difference, and I know that from my personal experience. So 

please keep up the good work. It really makes a difference. 

Thank you all for traveling to Washington. Your commitment to 

this cause is truly extraordinary and inspiring. 

I would now like to turn to Senator Casey for any final thoughts 

he might have. 

Senator CASEY. Madam Chair, thanks very much. We want to 

thank all of the witnesses, to Lorynn, Charlie, and Jonathan, 

Angie, Dr. Rodgers, Mr. Sparks, so many others who are here. 

Another suggestion I have, you know, we are worried about the 

budget cut to the National Institutes of Health, a big cut of billions 

of dollars. I thought, because Mr. Sparks is familiar with the White 

House, he could somehow get in there and get that and just cross 

it out of the budget document. 

[Laughter.] 

Senator CASEY. Just a suggestion. 

But I am serious about the issue. In addition to the work we 

have to do to reauthorize the Special Diabetes Program, we have 

got to fight hard against the cuts to NIH. Fortunately, the opposition to those cuts is bipartisan. I think we can do that together. 

But all of our delegates will play a role in all of these issues. 

The stories that you tell about your own lives and your own challenges are going to be critically important in this debate. We are 

grateful you are with us today, and this is among the more enjoyable hearings we will ever have, despite all the challenges that you 

have and the stories that you told. Thank you and God bless you. 

The CHAIRMAN. Thank you. 

[Applause.] 

The CHAIRMAN. Committee members will have until Friday, August 11th, to submit questions for the record. Again, my thanks to 

JDRF, to all the delegates who inspire us, to our terrific panel of 

witnesses. Thank you so much for being here. 

This hearing is now adjourned. 

[Applause.] 

[Whereupon, at 10:55 a.m., the Committee was adjourned.] 

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APPENDIX 

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Prepared Witness Statements for the Record 

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Prepared Statement of Paul Sparks, Actor, New York, New York 

Thank you, Chairman Collins, thank you, Ranking Member Casey, and the members of the Committee for inviting me to testify today. It’s an honor for me to be 

here. 

I’ll start by saying, I know how important the research supported by the Special 

Diabetes Program is because in my own lifetime as a person with type 1 diabetes, 

I have seen—and benefited—from the advances discovered in our labs, tested in our 

clinical trials, and brought to market. 

I was diagnosed with T1D when I was 27, living in New York, working as an 

actor—which also meant that I was working as a construction worker in order to 

pay my bills. 

Over the course of about seven or eight months, I lost about 45 pounds. I noticed 

that I was going to the bathroom a lot. I was having muscle cramps all the time. 

I started not being able to see clearly. I was very thirsty—and constantly starving. 

Basically, my body was falling apart. Thankfully, I went home to Oklahoma to 

see my parents for Thanksgiving. I looked so grim, so thin and so unhealthy, that 

my mother almost had a heart attack when she saw me. 

Luckily, my brother was a medical resident at the time. Via a phone call, he recommended that I see a doctor soon, because it sounded like I had diabetes. 

Well, I did see a doctor the next day, and my brother was right. 

I spent the next few months trying to learn about T1D and figure out how to get 

the care I needed. 

As the kids and parents here know, this is an anxiety-producing disease. You are 

the patient but you are also, in many ways, the caregiver. You are responsible for 

keeping yourself healthy. And you have to stay on top of it; because if you don’t, 

you will get very sick—or worse. 

That’s why the research and advances in care are so important. 

Today, nearly 20 years after my diagnosis, I use inhaled insulin that quickly and 

safely brings my blood glucose back in range. And I wear a continuous glucose monitor, or CGM, that allows me to know at all times whether my glucose is going too 

high or too low so I can take action. 

These advances have transformed the quality of my life. 

I used to have to stash sugar on the set of plays I was in, in case I needed to 

stabilize my blood glucose. And I can tell you it’s kind of strange when a character 

in a 18th century period drama pulls a bottle of orange juice out of a sofa cushion 

and starts chugging mid-dialog! 

Probably the most demonstrative example of how important these advances are: 

Three years ago, I turned off my GCM so that my very pregnant wife, Annie, could 

sleep peacefully through the night without any beeping, which occurs when my glucose level goes low. Because I’d switched it off, it did not alert me, I suffered a severe low blood sugar while asleep, and woke up to a frightened pregnant wife, a 

crying 4-year old, and seven New York City EMTs standing over me. 

These new technologies, when they are turned on, and other research advances 

literally save my life every day and they save the lives of every one of these delegates. And we are at the cusp of a whole new generation of therapies, devices, and 

dare I say, a cure. 

That’s why we can’t let up on research. We need more advances—so we can cure 

and prevent T1D—so all of us, like Charlie, Lorynn and Jonathan who are here on 

the panel with me, can live life without thinking about this disease at all. 

We need to keep the momentum going by renewing the Special Diabetes Program 

before it expires at the end of September. 

I’ll let others today go on about the science and the policies that support it. But 

let me just say this: this research has made a difference in my life—it has made 

a difference in the lives of everyone in this room—and millions more. 

So thank you, Chairman Collins, for your outstanding leadership, and thank you 

Ranking member Casey for your strong support of T1D research and coverage for 

technologies like the Continuous Glucose Monitor. It’s great that people on Medicare 

now have access to CGMs just like the rest of us. 

And thank you and your colleagues for the bipartisan support of the Special Diabetes Program. It’s doing great work for the millions of Americans living with this 

disease—like me. 

Thank you. 

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Testimony 

Before the 

Special Committee on Aging 

United States Senate 

"Progress Toward a Cure for Type I Diabetes: 

Research and the Artificial Pancreas" 

Statement of 

Griffin P. Rodgers, M.D., M.A.C.P. 

Director 

National Institute of Diabetes and Digestive and 

Kidney Diseases 

National Institutes of Health 

U.S. Department of Health and Human Services 
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Chairman Collins, Ranking Member Casey, and Members of the Committee, as Director 

of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), thank you for 

your invitation to testify at this hearing on type I diabetes. On behalf ofNIDDK and the other 

Institutes and Centers of the National Institutes of Health (NIH) within the U.S. Department of 

Health and Human Services (HHS), I am pleased to tell you about some of the significant recent 

scientific advances and future research opportunities in type I diabetes and its complications, 

including research supported by the Special Statutory Funding Program for Type 1 Diabetes 

Research (Special Diabetes Program). 

Today I would like to update you on the following topics: improving the outlook for 

people with type I diabetes; developing technologies to improve glucose control; restoring beta 

cell function; preventing, treating, and reversing diabetic complications; understanding the 

causes of type I diabetes toward disease prevention; testing strategies to stop the autoimmune 

attack and preserve beta cells; and emerging opportunities in type I diabetes research. 

The economic and personal toll diabetes takes on our nation is substantial, and 

biomedical research holds the promise to prevent, treat, and ultimately cure this disease. Toward 

improving the health of Americans affected by diabetes, NIH invests more than $1 billion a year 

in diabetes research. This investment has been complemented by the support and efforts of our 

research partners-academic institutions, the U.S. Food and Drug Administration (FDA), the 

Centers for Disease Control and Prevention (CDC), and charitable and patient advocacy groups 

such as JDRF (formerly the Juvenile Diabetes Research Foundation), the American Diabetes 

Association (ADA), and the Leona M. and Harry B. Helmsley Charitable Trust, who share our 

goals to prevent, treat, and cure type I diabetes. 

Through the invaluable support of Congress, through collaborative and coordinated 

research efforts, through the hard work of our researchers, and through the dedication and 

generosity of our clinical research participants, we have made important strides toward these 

goals. 

Type I diabetes primarily strikes children and adolescents, but it may begin at any age. It 

is an autoimmune disease, in which the body's immune system launches a misguided attack and 

destroys the insulin-producing beta cells found in clusters called islets within the pancreas. 

Insulin is an essential hormone that helps the body regulate glucose (sugar) levels in the blood. 

Because their bodies no longer produce insulin, people with type I diabetes-or the parents of 

young children with the disease-must do the work of the lost beta cells. The children here 

today and people of all ages with the disease must closely watch their food intake and physical 

activity levels, monitor their blood glucose levels many times each day and night, and administer 

insulin through injections or an insulin pump. This is an enormous and relentless burden on 

them and their families, and greatly affects quality of life. Despite their vigilance, people with 

type I diabetes remain susceptible to dangerous and frightening episodes of hypoglycemia (low 

blood glucose) and to developing long-term complications that affect their eyes, kidneys, nerves, 

heart, and other organs. Thus, it is imperative to pursue research to identify prevention strategies 

and improved treatments, while striving for a cure. 

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IMPROVING THE OUTLOOK FOR PEOPLE WITH TYPE I DIABETES 

Biomedical research has led to dramatic improvements in the health and quality of life of 

people with type I diabetes. A major contributor to this success is the information that has been 

garnered by the NIDDK's landmark Diabetes Control and Complications Trial (DCCT) and its 

follow-up study, the Epidemiology of Diabetes Interventions and Complications (EDIC). 

DCCT, which began in 1983, compared the effect of intensive blood glucose control versus what 

was conventional care at the time on the long-term health of people with type 1 diabetes. DCCT 

demonstrated that intensive control, beginning as soon as possible after diagnosis, prevented or 

delayed the development of complications of the eyes, kidneys, and nerves. After DCCT ended 

in 1993, EDIC-which began in 1994 and is ongoing-followed the original DCCT participants 

and demonstrated enduring protective effects of intensive glucose control on the eye, kidney, 

nerve, and heart complications of diabetes. These results transformed clinical care for people 

with type 1 diabetes: doctors now recommend that people with the disease practice intensive 

control as early in the course of the disease as safely possible. 

Even though it has been nearly 35 years since DCCT began, this important study 

continues to provide critical insights. The study recently reported results related to diabetic eye 

disease (retinopathy), showing that people with type 1 diabetes who intensively control their 

blood glucose early in their disease, versus those who do not, are 48 percent less likely to need 

eye surgery, which reduced eye surgery costs.' This reduction led to eye surgery costs about 32 

percent lower for people who practice early intensive glucose control. Another important recent 

eye finding came from analysis of about 24,000 eye exams from over three decades: 

DCCT/EDIC scientists determined that people with type 1 diabetes should get eye exams to 

detect retinopathy based on their risk, rather than on an automatic, annual schedule.2 Adjusting 

the frequency of eye screenings to a personalized approach-based on risk of severe eye 

problems-would result in fewer eye exams at lower cost and quicker diagnosis. For example, 

over 20 years, the new schedule would result in eight exams on average, a greater than 50 

percent reduction in eye examinations compared with annual exams. 

DCCT/EDIC researchers also examined differences in cardiovascular (heart) problems, 

which can take many years to develop, and found that those who practiced early intensive blood 

glucose management had a 30 percent reduced incidence of cardiovascular disease and 32 

percent fewer major cardiovascular events 30 years later.1 Historically, people with type I 

diabetes have had a higher mortality rate than the general population. In another advance, 

DCCT/EDIC researchers recently found that this increased mortality rate can be reduced or 

eliminated through careful management of blood glucose.4 These new findings add to 

DCCT/EDIC's decades of evidence demonstrating that people with type I diabetes can 

dramatically increase their likelihood of living long, healthy lives by practicing early, intensive 

blood glucose management. They also demonstrate the fruits of a long-term research 

investment-NIDDK has supported DCCT/EDIC for nearly 35 years. 

1 https:llwww.ncbi.nlm.nih.gov/pubmed/25923552 

2 https:llwww.ncbi.nlm.nih.gov/pubmed/28423305 

3 https:l/www.ncbi.nlm.nih.gov/pubmed/26861924 

4 https:llwww.ncbi.nlm.nih.gov/pubmed/27411699 

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DEVELOPING TECHNOLOGIES TO IMPROVE GLUCOSE CONTROL 

Results from DCCT/EDIC clearly show the importance of good glucose control to the 

long-term health of people with type I diabetes. Type I diabetes, however, is an extremely 

burdensome disease to manage for even the most vigilant, and intensive therapy brings with it 

potentially dangerous episodes of hypoglycemia. Thus, despite the unequivocal evidence of 

benefit, many people, especially teens, are not able to achieve the level of glucose control that 

researchers helped DCCT participants achieve. Data from the SEARCH for Diabetes in Youth 

study, co-led by CDC and NIDDK, showed that one out of five teenagers with type I diabetes 

have hemoglobin A 1 c (HbA I c) levels-a measurement of blood glucose levels over timeabove 9.5 percent, which is above the 9.0 percent average level of the DCCT group that did not 

practice intensive control, and much higher than the recommended level for adolescents of less 

than 7.5 percent.5 This is worrisome, indicating that achieving the recommended intensive 

glucose control and attaining its long-terrn protective effects is particularly challenging in this 

age group. Because poor glucose control may worsen the long-term health of these children, new 

approaches to improve glucose control are urgently needed. 

NIDDK has invested significantly with resources provided by the Special Diabetes 

Program in glucose management technology, including artificial pancreas technologies. An 

artificial, or bionic, pancreas has three components: a glucose-sensing component that measures 

blood glucose levels and sends data to a computer; an insulin delivery device; and a computer 

that calculates the amount of insulin needed and instructs insulin delivery based on that 

calculation, thereby "closes the loop" between glucose sensing and insulin delivery. This 

technology is designed to do the work of the pancreas with minimal human input, and holds 

promise not only to relieve patient and caregiver burden, but also to improve the health of people 

with type 1 diabetes. A significant milestone was achieved last fall when the FDA approved the 

first commercial hybrid artificial pancreas device.6 NlDDK supported early research that 

contributed to the development of the approved device, and continues to vigorously support 

research at all stages to advance artificial pancreas technology. 

The commercial artificial pancreas device that FDA approved last fall is a first-generation 

hybrid device intended for insulin delivery and continuous glucose monitoring in people ages 14 

and older with type 1 diabetes. The device can be programmed to automatically adjust insulin 

administration; however, it still requires users to count and enter mealtime carbohydrates. An 

NIDDK-supported study of day and night use of another hybrid artificial pancreas device at 

home, without continuous monitoring by study staff, found that such use was feasible and safe in 

adolescents, and that it increased the amount of time these adolescents spend in the target blood 

glucose range.7 The component of this device that calculates insulin requirement based on 

glucose sensing is designed to work with numerous sensors and pumps, so that it could 

potentially work with improved versions of these sensor and pump components that are 

subsequently developed. Numerous improvements are on the horizon which could more fully 

automate artificial pancreas technology, make the devices simpler and more user friendly, 

'https://www.ncbi.nlrn.nih.gov/pubrned/19643434 

6 https://www.fda.gov/NewsEvents!Newsroorn/PressAnnouncernentslucrn522974.htrn 7 httrs://www.ncbi.nlrn.nih.gov/pubrned/26740634 

4 
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personalize care and expand the user population for this technology. It is imperative to continue 

pursuing additional artificial pancreas technologies through research to reach these goals, and 

NIDDK-supported development of many other devices is progressing rapidly. For example, the 

first at-home study of a bihormonal pancreas system--one which delivers both insulin and 

glucagon, hormones that work together to control blood glucose levels-showed that it improved 

glucose control better than conventional insulin pump therapy without the need for carbohydrate 

counting before mealtimes.8 

The successes of these and other studies have laid the groundwork for more advanced 

clinical trials to generate data toward FDA approval of these devices. NIDDK, through the 

Special Diabetes Program, is supporting four new such trials that have recently begun 

recruitment or will begin recruiting in the next year. These pivotal studies will test the artificial 

pancreas technologies in larger groups, with wider age ranges, over longer periods of time, and 

in real world conditions. They will look at factors including safety, efficacy, user friendliness, 

physical and emotional health of participants. 

Two of the trials build on the advances described above: one trial will test the bihormonal 

artificial pancreas system in 600 people, including children as young as four years of age, for six 

months. A second trial will test artificial pancreas use in 130 youth ages six to 18 for a full year. 

The third trial being supported is a trial that will compare the currently FDA-approved hybrid 

closed loop artificial pancreas device to a next-generation system, further refined to improve 

blood glucose control, particularly around mealtime, in I 00 youth for three months. A fourth set 

of studies will test an innovative platform on smartphones with different insulin pumps and stateof-the-art glucose sensors. These trials are intended to advance the goal to have multiple 

artificial pancreas technologies that are FDA-approved for use in all ages, allowing people with 

type l diabetes, their caregivers, and their healthcare providers to choose the technology best 

suited to their needs. 

NIDDK continues to support research being conducted by small businesses to develop 

innovative technologies to improve the components of artificial pancreas devices. For example, 

one small business supported by NIDDK created a computer program that runs on a mobile 

device linked to an insulin pump and continuous glucose monitor. The development of this 

technology was initially supported by grants to an academic investigator and then to the small 

business. The program was recently selected as the core analytic and control technology for a 

device in one of the new advanced trials described above. 

We also support research to identify the most effective ways to incorporate artificial 

pancreas technologies into clinical care and how to enhance the usability of these new tools to 

help patients in their decision making regarding diabetes control, without overwhelming them 

with excessive data or complexity. Recently, the FDA expanded the approved use of one brand 

of continuous glucose monitor indicated for management of diabetes in people two years and 

older, enabling people to make diabetes treatment decisions using data from this device without 

confirming glucose levels with a painful finger stick.9 This continuous sensor device is also 

'https://www.ncbi.nlm.nih.gov/pubmed/28007348 

9 https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm534056.htm 

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being studied as part of an automated artificial pancreas. Partnerships between bioengineers 

designing these devices, clinicians, and behavioral scientists are key to making artificial pancreas 

use easier. With continued research, artificial pancreas technology may become a reality for all 

people with type I diabetes. 

RESTORING BETA CELL FUNCTION 

Although artificial pancreas technology represents an important and near-term approach 

to managing type I diabetes, it is not a cure. Thus, another major goal of NIH-supported type I 

diabetes research is to identify ways to replace lost beta cells and thereby restore insulin 

production-a biological cure for the disease. One way to restore the ability to produce insulin 

in response to glucose levels is to replace beta cells through islet transplantation. The current 

procedure involves purifying islets from a donor pancreas and transplanting them into a person 

with type I diabetes. NIDDK and the National Institute of Allergy and Infectious Diseases' 

(NIAID) co-led Clinical Islet Transplantation (CIT) Consortium, supported by the Special 

Diabetes Program, has been conducting clinical and mechanistic studies to test different 

strategies to make islet transplantation safer and more effective. One of CIT's trials, a Phase III 

study of islet transplantation without accompanying kidney transplantation, tested islet 

transplantation in 48 people with type I diabetes who had persistent impaired awareness of 

hypoglycemia and frequent severe hypoglycemia events despite expert care. For this select 

group of people with difficult-to-control diabetes and very high risk, frequent life-threatening 

hypoglycemic events, the potential benefits of this procedure could outweigh the risks of having 

to take immunosuppressive medicines following such a transplant. 

The study found that, two years after transplantation, more than 70 percent of participants 

were free of severe hypoglycemic events, had established near-normal control of glucose levels, 

and had restored hypoglycemia awareness. 10 These findings are significant, indicating that islet 

transplantation is an effective treatment for people whose type 1 diabetes cannot be controlled by 

other means and for whom hypoglycemic episodes are life-threating. The results of this trial will 

be the basis for applications to the FDA for licensure of purified human pancreatic islets; 

licensure would allow third-party reimbursement for the pancreatic islets used during the 

transplant procedure, transitioning it from an experimental drug to one covered by insurers. 

One barrier to islet transplantation is the scarcity of donor islets for transplant. Toward 

overcoming this barrier and pursuing other innovative strategies to protect and replace beta cells 

in people with diabetes, NIDDK launched the Human Islet Research Network (HIRN) with 

support from the Special Diabetes Program. HIRN builds on the ground-breaking successes of 

NIDDK's Beta Cell Biology Consortium, which focused primarily on research in mice. Now 

advances from the Beta Cell Biology Consortium are being incorporated into HIRN's studies of 

human beta cells. For example, researchers in HIRN developed a new laboratory production 

method to make large quantities of beta cells from the skin cells of people with type I diabetes. 11 

This method could, with further development, be used to manufacture beta cells from a person 

with type 1 diabetes in the quantities needed for transplantation back into that same person. 

These cells would likely require protection from autoimmune attack, perhaps through a 

10 https://www.ncbi.nlm.nih.gov/pubmed/27208344 11 https://www.ncbi.nlm.nih.gov/pubmed/27163171 

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bioengineered approach to encapsulation of cells, but the recipient might not require toxic 

immunosuppressive medications to prevent rejection of the tissue. This procedure for generating 

beta cells and islets from skin cells could also provide a valuable resource for drug screening and 

for precision medicine studies of the development of the disease. 

HJRN scientists are exploring other strategies for replacing the lost beta cells, such as 

replication of a patient's remaining beta cells or regeneration of beta cells from related cells in 

the body, without the need for transplantation. Small molecules-which can be developed into 

drugs-hold promise for inducing beta cell replication or regeneration, and HIRN is contributing 

to exploration of this possibility. Scientists are identifying and studying such small molecules, 

like harmine 12 and SerpinB!, 13 as well as generating new small molecule screening assays, 14 to 

discover and develop highly potent, beta cell-specific molecules. 

HIRN researchers have also made exciting progress in identifying biomarkers of beta cell 

death and in developing the means to measure these markers in people with type 1 

diabetes. 15•

16•17 For example, using the knowledge that dying cells release fragmented DNA into 

the blood, researchers demonstrated that beta cells release DNA with a uniquely modified pattern 

that can be detected in people with type 1 diabetes. At present, this research indicates these 

assays are sensitive enough to reliably monitor the success or failure of transplanted islets in 

humans, giving us a valuable new tool in transplantation research. The next generation of 

assays, which are in development, are designed to be even more sensitive, and could potentially 

detect the loss of only a very few beta cells early in the disease process, possibly before any 

other clinical signs can be detected. These advances could lead to a minimally invasive approach 

to monitor people at risk for the disease and to diagnose type I diabetes much earlier, perhaps 

when the process of beta cell loss could be halted and overt disease prevented. 

PREVENTING, TREATING, AND REVERSING DIABETIC COMPLICATIONS 

Pursuing these promising directions for replacing lost beta cells is imperative, since 

chronic elevation of blood glucose levels slowly damages organs and can result in lifethreatening diabetes complications. SEARCH recently reported estimates that by about age 21, 

approximately 32 percent of youth with type 1 diabetes would have at least one complication for 

the disease or would be at high risk for a complication. 18 This finding scares us all, and 

underscores the need for early monitoring of youth for earlier diagnosis and treatment of 

complications, and the critical need to pursue research toward preventing, treating, or reversing 

diabetes complications. 

Blindness is a debilitating complication of diabetes. Laser treatment can be an effective 

therapy to prevent blindness in advanced cases of diabetic eye disease or vision loss from 

diabetic macular edema (DME), a type of diabetic eye disease. This treatment, however, causes 

12 https://www.ncbi.nlm.nih.gov/pubmed/25751815 13 https://www.ncbi.nlm.nih.gov/pubmed/26701651 14 https://www.ncbi.nlm.nih.gov/pubmed/276241 03 15 https://www.ncbi.nlm.nih.gov/pubmed/26976580 16 https://www.ncbi.nlm.nih.gov/pubmed/27643615 17 https://www.ncbi.nlm.nih.gov/pubmed/26216854 18 https://www.ncbi.nlm.nih.gov/pubmed/28245334 

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some immediate and permanent scarring of the eye and worsening of vision in order to prevent 

future events that could cause blindness. This prompted scientists in the National Eye Instituteled Diabetic Retinopathy Clinical Research Network (DRCR.net) to seek better treatments. In 

2010, a landmark DRCR.net trial demonstrated that an anti-vascular endothelial growth factor 

(VEGF) drug, ranibizumab injection, is a more effective treatment for DME than laser 

treatment. 19 This finding dramatically changed clinical practice, and ranibizumab injection 

quickly became one of the standard treatments for people with vision loss from DME. 

Building on this result, a recent DRCR.net comparative effectiveness trial compared 

safety and efficacy of three anti-VEGF drugs commonly used to treat DME: Eylea® 

(aflibercept), Avastin® (bevacizumab), and Lucentis® (ranibizumab injection). The trial 

showed that, in people with DME and mild visual impairment, any of the three drugs, on 

average, improved visual acuity and that the drugs were equally effective after two years.20 

These results give people with diabetes and their providers more options for treating DME, 

specifically regarding the cost of treatment. Improving vision with anti-VEGF therapy can make 

the difference between being able to drive or not, which greatly affects quality of life. 

DRCR.net also showed, in a separate trial, that ranibizumab was more effective than laser 

treatment at improving visual acuity over two years for e(es with the most severe form of 

diabetic eye disease--proliferative diabetic retinopathy. 2 This result gave people with diabetes 

and their providers the first new option for treating proliferative diabetic retinopathy in four 

decades. Eyes treated with ranibizumab also had fewer complications from diabetic retinopathy 

and required less eye surgery. In April, based on these results, FDA approved ranibizumab for 

all forms of diabetic retinopathy, expanding the previous approval of the drug for people with 

DME.22 

With support from the Special Diabetes Program, the Preventing Early Renal Loss in 

Diabetes (PERL) trial is studying whether the inexpensive, generic medication allopurinol, 

currently used for treating gout, can preserve kidney function in people with type l diabetes who 

are at high risk of kidney disease. PERL recently finished recruitment and, if this inexpensive 

drug proves effective, it has the potential to be the first new therapy to reduce risk for diabetic 

kidney disease in over two decades. 

UNDERSTANDING THE CAUSES OF TYPE 1 DIABETES 

TOWARD DISEASE PREVENTION 

In parallel to efforts to improve management of type I diabetes, develop a cure, and 

prevent or treat diabetic complications, it is imperative to gain better understanding of the 

initiation and earlier stages of the disease. This will enable us to develop prevention strategies, 

so future generations do not have to be burdened with the disease like the children and adults 

here today are. A person's risk for developing type l diabetes involves both genetic and 

19 https://www.ncbi.nlm.nih.gov/pubmed/20427088 20 https://www.ncbi.nlm.nih.gov/pubmed/26935357 21 https://www.ncbi.nlm.nih.gov/pubmed/26565927 22 https://www.accessdata. fda.gov/drugsatfda docs/appletter/20 17/125156orig Is 114ltr.pdf 

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environmental factors. Many genes are known to contribute to disease risk, but environmental 

factors are not yet conclusively identified. Knowing these factors and determining their 

contributions is key to understanding the causes of type 1 diabetes. 

We have made significant progress in understanding the genetic contributors to type 1 

diabetes. Only a decade ago, just a few genes that increased risk for the disease had been 

identified. Today, because ofNIDDK's Type I Diabetes Genetics Consortium and other groups, 

we know over 50 genes or genetic regions that affect disease risk, representing about 80 percent 

of the genetic contributors. To build on this success, NIDDK is supporting research to 

understand the function of identified genes to determine how they may influence disease 

development, which could lead to new targets for prevention or treatment. 

The genetic contribution, however, is only part of the story. SEARCH recently reported 

that the rate of new diagnosed cases of type I diabetes is increasing among youth in the United 

States, in the first-ever estimate of incidence trends in the five-major racial/ethnic groups in the 

nation. The relative annual increase in the incidence of type I diabetes, from 2002 to 2012, was 

about 1.8 percent.23 This study also found that the increase in incidence was not shared equally 

among racial/ethnic groups. Although historically, type 1 diabetes has been considered to affect 

primarily non-Hispanic white youth, the new data demonstrate that type I diabetes is an 

increasing burden for minority youth. The rate of new diagnosed cases increased most sharply in 

Hispanic youth, a 4.2 percent annual increase. In non-Hispanic blacks, the rate increased by 2.2 

percent and in non-Hispanic whites by 1.2 percent per year. These findings generate many 

questions, such as why the increase in rates of type I diabetes development varies so greatly and 

is so concentrated in specific racial and ethnic groups. Further research could illuminate the 

factors behind these differences and provide important clues to tailoring prevention approaches. 

Rising rates of type I diabetes suggest that there is an unknown factor-or factors-in 

the environment that interacts with genetic risk to trigger disease onset or protect against it. 

Identifying these-such as an infectious agent, dietary factors, or some other factor-is critical 

to understanding the disease process and to developing prevention strategies. Toward these 

goals, NIDDK, through the Special Diabetes Program, supports an ambitious, long-term clinical 

research study called The Environmental Determinants of Diabetes in the Young, or TEDDY. 

After screening over 425,000 newborns, TEDDY is currently following over 6,000 of them at 

high genetic risk of type I diabetes until they are 15 years old. Dedicated parents and 

researchers are regularly collecting information about the children's diet, allergies, illnesses, and 

other environmental exposures. Additionally, over 3.2 million biological samples have been 

collected to date-the most data and samples ever collected on newborns at risk for 

autoimmunity and type I diabetes. These samples are a treasure trove now being analyzed with 

state-of-the-art genomic, metabolomic, and proteomic technologies to uncover possible 

environmental triggers and protective factors. Microbiome research-to study the 

microorganisms that populate the digestive tract-in TEDDY is also shedding light on the 

broader development of the microbiome as TEDDY is one of the largest studies of the 

microbiome in children. TEDDY is another example of a long-term effort that could pay major 

dividends and give unique insight into type I diabetes and children's health. 

23 httos://www.ncbi.nlm.nih.gov/pubmed/28402773 

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TESTING STRATEGIES TO STOP THE AUTOIMMUNE ATTACK AND 

PRESERVE BETA CELLS 

As new environmental triggers are identified by TEDDY and novel insights emerge from 

research on the function of risk genes, NIDDK's Type I Diabetes TrialNet is uniquely positioned 

to test promising prevention strategies. TrialNet, through the Special Diabetes Program, 

supports the development and implementation of trials to test novel strategies aimed at 

preventing type I diabetes in people at risk and slowing disease progression in people newly 

diagnosed. These trials go hand-in-hand: not only are TrialNet and NIAID's Immune Tolerance 

Network studies in people newly diagnosed potentially beneficial to participants by preserving 

remaining beta cell function, these studies also provide critical information for prevention 

research. For example, after finding that the drug abatacept was safe and preserved beta cell 

function in people newly diagnosed with type I diabetes, TrialNet investigators are now studying 

its use for prevention in people at high risk for the disease. Building on similar findings in other 

successful new-onset studies, TrialNet has also launched a prevention trial with the anti-CD3 

monoclonal antibody, teplizumab. TrialNet recently announced results from a third prevention 

study using oral insulin: the major study population did not benefit, but in a smaller group, with 

more advanced disease, fewer people developed a clinical diagnosis of type I diabetes. Ongoing 

studies are comparing immune responses to different doses of oral insulin, providing new key 

information about this agent. 

The ability to assess accurately those at risk for type I diabetes is critical for identifying 

individuals in the general population, so that as many people as possible can benefit if and when 

new prevention strategies are proven effective. TrialNet also supports research to understand the 

natural history of type I diabetes and identify people at risk for the disease. To date, TrialNet 

has screened over 160,000 individuals-and screens approximately 15,000 new individuals per 

year-for type I diabetes risk to identify those eligible for participation in Tria!Net prevention 

studies. Data from this TrialNet study, TEDDY, and other studies demonstrated that progression 

of type l diabetes proceeds through distinct stages, allowing identification of the disease before 

symptoms appear. This forms the basis for a new recommendation from JDRF, the Endocrine 

Society, and the ADA for a type I diabetes staging classification in at-risk individuals that 

provides a framework for the research and development of preventative therapies.24 TrialNet 

will begin piloting use of finger sticks to collect blood for antibody screening; this could greatly 

increase the number of children and ease with which they are screened for type I diabetes. 

These high-risk, high-reward studies to identify, test, and-based on advances in screeningdeliver these prevention strategies are poised to inform critical future public health efforts to 

identify those at risk and to intervene to prevent type 1 diabetes. 

EMERGING OPPORTUNITIES IN TYPE 1 DIABETES RESEARCH 

The advances I have discussed today are just a few examples of the exciting progress in 

research on type I diabetes and its complications. The investments we have made in 

infrastructure, technology, and human potential are bearing fruit. We are learning so much so 

24 https:/lwww.ncbi.nlm.nih.govlpubmed/26404926 

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quickly, and the results of this research are improving the lives of people with type I diabetes. 

But we cannot rest yet, and we cannot slow down. To capitalize on the recent research progress I 

described and to take advantage of advances in cutting-edge technology, NIDDK, under the 

auspices of the statutorily required Diabetes Mellitus Interagency Coordinating Committee, 

solicited input from scientific and lay experts about future research directions in type I diabetes 

and its complications at a workshop held this past April.25 The opportunities that emerged from 

that workshop are extensive and exciting, such as the ability to increase understanding of the 

immunology of type I diabetes toward new prevention and cure strategies. For example, high 

risk for type I diabetes, in those with genetic susceptibility, is predicted by the presence of two 

or more antibodies that recognize different cellular components (autoantigens). Powerful new 

technologies provide opportunities to facilitate discovery and characterization of new 

autoantigens and the immune response to them, which could be used to monitor disease 

progression and response to treatment and, potentially, could lead to novel therapies. In another 

example, it may be possible to change the course of the disease, or to prevent it entirely, by 

interfering with the pathways leading to autoimmunity. Recent discoveries in the field of cancer 

immunology demonstrate that tumors can evolve to evade the immune system. They do this, in 

part, by activating the normal mechanisms by which undamaged or uninfected cells turn off 

immune responses after an infection. What if we could do this in type I diabetes? What if we 

could specifically and safely deactivate the "over active" immune system in type I diabetes? 

Innovative research in this area could lead to identification of compounds or development of 

vaccines to safely restore normal immune system functioning in people with type I diabetes. 

The timing is also right to capitalize on advances in single-cell analysis. Many biological 

experiments are performed on groups of cells, assuming that all cells of a particular "type" are 

identical. But, we are learning that individual cells within a population may differ dramatically, 

and these differences can have important consequences in health and disease. Single-cell 

analysis promises to enhance understanding of individual cells, and we are eager to apply this to 

the human islet tissue environment. Detailing the identity at the cellular and molecular levels 

and the function of important components of islet architecture at high resolution could help to 

improve understanding of the early steps of the disease process toward preventative approaches, 

develop highly specific therapeutic strategies based on the identification of new cellular and 

molecular targets, and improve the design and engineering of islets for cell replacement, disease 

modeling, and drug discovery. These are just a few of the timely opportunities poised to 

accelerate discovery and development in type I diabetes research. 

NIDDK support of type I diabetes research will also continue to be guided by the 20 II 

Diabetes Research Strategic Plan,26 which the Institute spearheaded with broad external input, 

and by the input that NIDDK receives at venues such as scientific conferences and workshops. 

With this input, NIDDK and NIH have identified the most compelling areas of research to pursue 

with funds from the Special Diabetes Program to ensure that the Program continues its 

25 https://www.niddk.nih.gov/about-niddkladvisory-coordinating-committees/diabetes-mellitus-interagencycoordinating-committee/Documents/DMICC Agenda 04262017.pdf 26 https://www.niddk.nih.gov/about-niddk/strategic-plans-reports/Pages/advances-emerging-opportunities-indiabetes-research.aspx 

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exceptional track record of supporting cutting-edge type I diabetes research. 

NIDDK also remains committed to fostering scientific collaboration and to resource 

sharing to reduce duplication and maximize return on scientific research investments. We 

remain committed to providing access to research resources to increase understanding of type I 

diabetes and its complications. For example, NIDDK supports distribution of human islets from 

organ donors to researchers and ancillary studies of type 1 diabetes clinical trials. Biosamples 

and data from completed studies are available to the broad research community through the 

NIDDK Central Repositories. We also support one of our most valuable resources-young 

investigators-through training and career development programs to recruit and retain scientists 

with different areas of expertise whose talents will enhance the type l diabetes field. 

Finally, they say that the whole is greater than the sum of its parts, and this is certainly 

true in type l diabetes research. We work together with our partners--our sister HHS agencies, 

academic institutions, and charitable and patient advocacy groups like JDRF, the Helmsley 

Charitable Trust, and ADA-and what we achieve collaboratively is changing the lives of the 

people with type l diabetes. This teamwork-like the collaboration among NIDDK, JDRF, and 

FDA to help advance artificial pancreas technologies-is essential and powerful, and propelled 

us toward the first approved hybrid artificial pancreas device, with several other promising 

devices in pipeline. 

With the remarkable progress already achieved through support from the Special 

Diabetes Program-and the promise of future research-the goals are clear. In the near term, 

artificial pancreas technologies will transform the lives of people with type I diabetes, making 

blood glucose control safer and less arduous. New ways to restore and protect beta cells may 

yield a cure for those with the disease. Medicines that prevent life-threatening disease 

complications may be developed. Finding the genes and environmental factors that contribute to 

type 1 diabetes may produce ways to identify those at risk at birth and safely prevent the disease, 

thereby eliminating new cases. With continued research, it is possible to imagine that people 

could lead a life free of the burden of type I diabetes and its complications. 

CONCLUDING REMARKS 

I appreciate this opportunity to share with you these exciting advances, ongoing efforts, 

and emerging opportunities in type I diabetes research. We are grateful for the continued 

support of Congress that has allowed NIH to vigorously support research to combat type I 

diabetes and its complications. We look forward to continuing our strong partnerships with 

patient advocacy groups, research institutions, and our sister federal agencies. We also thank the 

clinical study volunteers, without whom the clinical research I described today would not be 

possible. Working with these partners, NIH remains steadfast in our goals of preventing, 

treating, and ultimately curing type 1 diabetes. 

Thank you, Chairman Collins, Ranking Member Casey, and Members of the Committee 

for your attention. I will be pleased to answer any questions you may have. 

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Griffin P. Rodgers, M.D., M.A.C.P. 

Director, National Institute of Diabetes and Digestive and Kidney Diseases 

Dr. Griffin P. Rodgers was named director of the National Institute of Diabetes and Digestive 

and Kidney Diseases (NIDDK) at the National Institutes of Health on April I, 2007. Dr. Rodgers 

served as the NIDDK's acting director March 2006- April 2007 and was the Institute's deputy 

director from 2001 - 2007. Since 1998, Dr. Rodgers also serves as chief of the Molecular and 

Clinical Hematology Branch. The branch is now administratively managed by the NIH's National 

Heart, Lung, and Blood Institute. 

Dr. Rodgers received his undergraduate, graduate, and medical degrees from Brown 

University in Providence, Rl. He performed his residency and chief residency in internal medicine at 

Barnes Hospital and the Washington University School of Medicine in St. Louis. His fellowship 

training in hematology/oncology was through a joint program of the NIH with George Washington 

University and the Washington Veterans Administration Medical Center. In addition to his medical 

and research training, Dr. Rodgers earned a master's degree in business administration, with a focus 

on the business of medicine, from Johns Hopkins University in 2005. 

As a research investigator, Dr. Rodgers is widely recognized for his contributions to the 

development of the first effective, and now FDA-approved, therapy for sickle cell anemia. He was a 

principal investigator in clinical trials to develop therapy for patients with sickle cell disease. He also 

performed basic research that focused on understanding the molecular basis of how certain drugs 

induce gamma-globin gene expression. Recently, he and his collaborators have reported on a 

modified blood stem-cell transplant regimen that is highly effective in reversing sickle cell disease in 

adults and is associated with relatively low toxicity. 

Dr. Rodgers has been honored for his research with numerous awards, among them the 1998 

Richard and Hinda Rosenthal Foundation Award, the 2000 ArthurS. Flemming Award, the Legacy 

of Leadership Award in 2002, and a Mastership from the American College of Physicians in 2005. 

He was a 2015 finalist for The Samuel J. Heyman Service to America Medals (Sammies). 

Dr. Rodgers has been an invited professor at medical schools and hospitals in France, Italy, 

China, Japan, and Korea. He has been honored with many named lectureships at American medical 

centers and as commencement speaker at many medical schools. He has published more than 200 

original research articles, reviews, and book chapters; has edited four books and monographs; and 

holds three patents. 

Dr. Rodgers served as governor to the American College of Physicians for the Department of 

Health and Human Services from 1994 - 1997. He is a member of the American Society of 

Hematology; the American Society of Clinical Investigation; the Association of American 

Physicians; the National Academy of Medicine (formerly the Institute of Medicine) of the National 

Academies of Sciences, Engineering, and Medicine; and the American Academy of Arts and 

Sciences. He served as chair of the Hematology Subspecialty Board and a member of the American 

Board oflnternal Medicine Board of Directors. 

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Prepared Statement of Charlie Albair, JDRF 2017 Children’s Congress 

Delegate, Gray, Maine 

Chairman Collins, Ranking Member Casey, and Senators, thank you for inviting 

me to speak before you today. 

My name is Charlie Albair from Gray, Maine. I am 10-years old, and will be entering the 5th grade at Gray New Gloucester Middle School. 

I am just like a lot of other kids. I love sports, especially basketball and baseball. 

And when I grow up, I hope to play in the Major Leagues—for the Boston Red Sox. 

The one big difference is that I have type 1 diabetes or T1D. 

I was diagnosed with T1D way back when I was 6-years-old. I was in the first 

grade. I started not feeling like myself. I kept asking the teacher to go to the bathroom because I really, really had to. She got angry at me because she thought I just 

was trying to skip class. 

She felt bad when she found out the real reason. 

At first I was kind of confused when I was diagnosed. I didn’t know what it was; 

‘‘diabetes’’ was a big word for a first-grader. 

In the beginning, we treated my diabetes with syringes. And a half a year later, 

I got the Omnipod pump and then a CGM to monitor my sugar levels. 

I love it. 

I don’t have to be constantly stabbing myself with a needle—like five or 10 times 

a day. 

What does this mean for me? 

When I first found out I had diabetes, I remember thinking that this would 

change my whole life. I thought that I wouldn’t realize my dream of being a sports 

star. 

Now I can realize I can do whatever I want. 

Sometimes my Omnipod or CGM beeps in class, and the other kids say, ‘‘Charlie, 

stop making noise.’’ I just tell them that that’s my natural ‘‘robot’’ noise. 

The pump and CGM are so much a part of me. But I do wish that they didn’t 

have to be. 

I want my disease to go away—for me and all the other kids who suffer from it. 

I want us all to be able to live without thinking about it. 

That’s why I am here. 

We need money for research. 

We need money so scientists can invent new pumps and monitors better than 

what we have now—and so they can come up with a cure for T1D. 

You have supported kids like me for so many years, and all I ask is that you continue to do so. And if you do, I will invite you to a game when I am on the Red 

Sox. 

Thank you. 

Prepared Statement of Lorynn Watt, JDRF 2017 Children’s Congress 

Delegate, Stroudsburg, Pennsylvania 

Chairman Collins, Ranking Member Casey, and Senators—thank you for inviting 

me to talk with you today. 

My name is Lorynn Watt, I am 17 years old, and this fall I will be a senior at 

Evergreen Community Charter School in Cresco, Pennsylvania. 

When I was nine, I was diagnosed with type 1 diabetes. I remember sitting on 

my parents’ bed, just about a week before Halloween, as my mom and step-dad told 

me that I had T1D. That day they loaded me into the car and took me to the hospital, where I’d learn how to care for myself. 

At that point, I only knew about diabetes from an episode of Hannah Montana 

I saw just before I was diagnosed. That was it. What I did know was that I was 

scared, felt awful, and all of a sudden was living a life where I had to inject myself 

with insulin multiple times a day, even though I was horrified of needles. 

Then at 14, I got a continuous glucose monitor (or CGM) and an insulin pump. 

It made my life so much easier. Now, all I need to do is look at my phone—which 

most kids my age do all the time—and I can see my blood sugar. It has been lifechanging, and I hope this, the artificial pancreas, and other advances are small 

steps toward a cure. 

I’ve heard every year since I was diagnosed that in 5 years there will be a cure. 

I’ve had this disease for almost 8 years. Now, I’m no mathematician, but you can 

see that we are a bit behind schedule. 

I believe that with your help we can have a cure. 

After all, we already have come so far. 

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I know this because my biological father also had T1D. He wasn’t in my life much. 

He didn’t have great care—no pump or CGM or even ability to check his blood sugar 

every day. 

So, he lost his foot, then his eyesight, and the use of his kidneys. He had to get 

a stent in his heart. And he died less than a year after my own T1D diagnosis, at 

just 38 years old. 

I am here today asking you to support more funding for more research because 

no one should have to suffer and lose their life because of T1D. 

I am here, inspired by his memory, and determined that none of the kids here 

today or sitting in a hospital room right now—scared—as they get their diagnosis, 

will have the same fate as my father. 

With your help, I know we can do it. I know we can find a cure. 

Thank you. 

Prepared Statement of Angie Platt, Chair Mom, JDRF 2017 Children’s 

Congress, Accompanied by her Son Jonathan Platt, Encino, California 

Chairman Collins, Ranking Member Casey, and Senators—thank you for inviting 

me to speak with you today. 

I am Angie Platt from Encino, California. My husband Jon and I have three children, all boys—twin 4 year olds and meet our oldest son Jonathan who is 14 years 

old. 

It’s hard for me to believe that the 6’5’’ young man sitting next to me is the same 

boy who was here for JDRF’s 2011 Children’s Congress. He was only 7 years old 

at the time, just 2 years into his diagnosis. 

If you watch him play in his competitive basketball tournaments, it would be very 

hard to believe that he is a child living with type 1 diabetes. 

I am here today to tell you and your colleagues that Jonathan is living proof that 

your leadership and actions have made a real difference in our lives and the lives 

of all people with T1D. 

In 2011, the T1D community asked you for help, and Senators, you gave it. The 

Special Diabetes Program has provided hundreds of millions of dollars of crucial 

funding for a range of therapies and investigations—including the artificial pancreas. 

In April 2016, Jonathan was enrolled in the pediatric trial for the Medtronic Hybrid Closed Loop 670G—otherwise known as the ‘‘artificial pancreas.’’ We felt as if 

we won the lottery. 

This device has given Jonathan better blood sugar control than he has ever had— 

and it gives our family some desperately needed peace of mind. In the past, we 

would wake up at minimum 3 times a night to check my son’s blood sugar. Jonathan used to have to stop practicing with his team or even sit out in a game because 

his blood sugars were too erratic. Now, he gets to play right through crunch time. 

As you know, last fall the FDA approved this artificial pancreas system. 

Senators, let me be clear: this would not have happened without your support of 

the Special Diabetes Program. 

Diabetes is relentless. We work so hard, we are so responsible, we are playing by 

all the rules. Jonathan is on the latest most advanced technology. Jonathan is doing 

everything right. 

But the ugly reality of diabetes is that as hard as we work, our kids are still vulnerable. This past June at Jonathan’s eye exam it was discovered that Jonathan has 

three dot hemorrhages. Quite frankly, there are kids who are a lot worse off than 

Jonathan. Those of us here are among the lucky ones. 

I know that we have made progress; my son is wearing the first artificial pancreas 

system approved in the world! But this disease doesn’t stop, so neither can we. 

We need the next generation devices that can fully automate insulin delivery. 

We need to ensure that progress continues in the area of diabetes complication 

treatments. 

We also need to prevent others from ever developing T1D—including my twin 

sons, Jonathan’s brothers, who are at a higher risk of developing it. They are enrolled in TrialNet, an SDP-funded prevention program. 

SDP has done so much, but it will expire on September 30th. The SDP gives me 

so much hope, but it needs a hero. We need you and your Senate colleagues to 

renew it for another three years so researchers can continue their great work. 

Senators, I want to thank you for all that you have done to make my family’s life 

and the lives of all of us here today better. Senator Collins, I particularly want to 

thank you for your steadfast commitment and outstanding leadership to advance 

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type 1 diabetes research and to help people gain access to new technologies. You 

have been a champion for us for a long time. 

Look at Jonathan—he will not lose to diabetes. 

We will fight alongside Jonathan. 

We will fight for all of these kids. 

I ask you to continue to fight along with us. 

Thank you. 

Æ 

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