(1) Pulmonary fibrosis (in this section referred 
to as ‘‘PF’’) is a relentlessly progressive, ultimately 
fatal disease that affects the lungs, gradually rob-
bing a person of the ability to breathe. 
(2) More than 128,000 individuals may be liv-
ing with PF in the United States; 48,000 individuals 
in the United States are diagnosed with PF annu-
ally; and as many as 40,000 die annually. 
(3) Prevalence of PF has increased more than 
150 percent since 2001, and is expected to continue 
rising as the population of the United States ages. 
(4) The median survival rate for a person with 
PF is 2.8 years. 
(5) More than 50 percent of PF cases are ini-
tially misdiagnosed as other forms of respiratory ill-
ness before being correctly diagnosed as PF, and 
more than 58 percent of patients go more than a 
year with symptoms before being diagnosed cor-
rectly. 
(6) The cause of most forms of PF is not well 
understood, and in most cases is unknown, though 
there is growing evidence that one cause of PF may 
be environmental or occupational exposure to pollut-
ants. 
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(7) There is no Food and Drug Administration- 
approved treatment or cure for PF. 
(8) Public awareness of PF remains low com-
pared to rare diseases of lesser prevalence, despite 
PF’s increasing prevalence. 
(9) There has been no federally funded national 
awareness or educational effort to improve under-
standing of PF in the public or medical commu-
nities, though nonprofit patient education and re-
search groups have begun to increase awareness. 
The first Federal legislation expressing Congress’ 
support for PF research, H. Con. Res. 182, was 
agreed to by both Houses of Congress in 2007. 
SEC. 3. PULMONARY FIBROSIS REGISTRY. 
Part B of title III of the Public Health Service Act 
(42 U.S.C. 243 et seq.) is amended by inserting after sec-
tion 317T the following: 
‘‘SEC. 317U. PULMONARY FIBROSIS REGISTRY. 
‘‘(a) ESTABLISHMENT.— 
‘‘(1) IN GENERAL.—Not later than 1 year after 
the receipt of the report required by subsection 
(b)(3), the Secretary, acting through the Director of 
the Centers for Disease Control and Prevention and 
in consultation with patients, patient advocates, and 
others with expertise in research and care of pul-
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monary fibrosis (referred to in this section as ‘PF’), 
shall— 
‘‘(A) develop a system to collect data on 
PF and other interstitial lung diseases that are 
related to PF, including information with re-
spect to the incidence and prevalence of the dis-
ease in the United States; and 
‘‘(B) establish a national registry (in this 
section referred to as the ‘National PF Reg-
istry’) that— 
‘‘(i) is used for the collection and stor-
age of data described in subparagraph (A); 
and 
‘‘(ii) includes a population-based reg-
istry of cases in the United States of PF 
and other interstitial lung diseases that are 
related to PF. 
‘‘(2) PURPOSE.—The purpose of the National 
PF Registry shall be to gather available data con-
cerning— 
‘‘(A) PF, including the incidence and prev-
alence of PF in the United States; 
‘‘(B) environmental and occupational fac-
tors that may be associated with the disease; 
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‘‘(C) age, race or ethnicity, gender, and 
family history of individuals who are diagnosed 
with the disease; 
‘‘(D) pathogenesis of PF; and 
‘‘(E) other matters as determined appro-
priate by the Secretary. 
‘‘(3) 
IMPLEMENTATION.—Implementation 
of 
the National PF Registry shall begin not later than 
180 days after the date of the enactment of this sec-
tion. 
‘‘(b) ADVISORY BOARD.— 
‘‘(1) ESTABLISHMENT.—Not later than 90 days 
after the date of the enactment of this section, the 
Secretary, acting through the Director of the Cen-
ters for Disease Control and Prevention, shall estab-
lish a board to be known as the National Pulmonary 
Fibrosis Advisory Board (in this section referred to 
as the ‘Advisory Board’). The Advisory Board shall 
be composed of at least one member, to be appointed 
by the Secretary, acting through the Director of the 
Centers for Disease Control and Prevention, rep-
resenting each of the following: 
‘‘(A) The National Institutes of Health. 
‘‘(B) The National Institute of Environ-
mental Health Sciences. 
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‘‘(C) The Department of Veterans Affairs. 
‘‘(D) The Agency for Toxic Substances 
and Disease Registry. 
‘‘(E) The Centers for Disease Control and 
Prevention. 
‘‘(F) Patients with PF or their family 
members and other individuals with an interest 
in developing and maintaining the National PF 
Registry. 
‘‘(G) Patient Advocates. 
‘‘(H) Clinicians with expertise on PF and 
related diseases. 
‘‘(I) Epidemiologists with experience work-
ing with data registries. 
‘‘(J) Geneticists or experts in genetics who 
have experience with the genetics of PF or 
other neurological diseases. 
‘‘(K) Others with expertise in research and 
care of PF. 
‘‘(2) DUTIES.—The Advisory Board shall— 
‘‘(A) review information and make rec-
ommendations to the Secretary concerning— 
‘‘(i) the development and maintenance 
of the National PF Registry; 
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‘‘(ii) the type of information to be col-
lected and stored in the National PF Reg-
istry; 
‘‘(iii) the manner in which such data 
is to be collected; 
‘‘(iv) the use and availability of such 
data, including guidelines for such use; and 
‘‘(v) the collection of information 
about diseases and disorders that primarily 
affect the lungs that are considered essen-
tial to furthering the study and cure of 
PF; and 
‘‘(B) consult with the Director of the Cen-
ters for Disease Control and Prevention regard-
ing preparation of the National Pulmonary Fi-
brosis Action Plan under section 5(a) of the 
Pulmonary Fibrosis Research Enhancement 
Act. 
‘‘(3) REPORT.—Not later than 1 year after the 
date on which the Advisory Board is established, the 
Advisory Board shall submit to the Secretary, the 
Committee on Energy and Commerce of the House 
of Representatives, and the Health, Education, 
Labor, and Pensions Committee of the Senate a re-
port on the review conducted under paragraph (2), 
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including the recommendations of the Advisory 
Board resulting from such review. 
‘‘(c) GRANTS.—The Secretary, acting through the 
Director of the Centers for Disease Control and Preven-
tion, may award grants to, and enter into contracts and 
cooperative agreements with, public or private nonprofit 
entities for the collection, analysis, and reporting of data 
on PF and other interstitial lung diseases that can be con-
fused with PF, be misdiagnosed as PF, and in some cases 
progress to PF. 
‘‘(d) COORDINATION WITH STATE, LOCAL, AND FED-
ERAL REGISTRIES.— 
‘‘(1) IN
GENERAL.—In establishing the Na-
tional PF Registry under subsection (a), the Sec-
retary shall— 
‘‘(A) identify, build upon, expand, and co-
ordinate among existing data and surveillance 
systems, surveys, registries, and other Federal 
public health and environmental infrastructure 
wherever possible, including— 
‘‘(i) existing systems in place at uni-
versities, medical centers, and government 
agencies; 
‘‘(ii) State-based PF registries, Na-
tional Institutes of Health registries, and 
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Department of Veterans Affairs registries, 
as available; and 
‘‘(iii) any other relevant databases 
that collect or maintain information on in-
terstitial lung diseases; and 
‘‘(B) provide for research access to PF 
data in accordance with applicable statutes and 
regulations, including those protecting personal 
privacy. 
‘‘(2) COORDINATION WITH NIH AND DEPART-
MENT OF VETERANS AFFAIRS.—Consistent with ap-
plicable privacy statutes and regulations, the Sec-
retary shall ensure that epidemiological and other 
types of information obtained under subsection (a) is 
made available to the National Institutes of Health 
and the Department of Veterans Affairs. 
‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this section 
$5,000,000 for fiscal year 2010 and $2,500,000 for each 
of the fiscal years 2011 through 2014.’’. 
SEC. 4. PULMONARY FIBROSIS RESEARCH EXPANSION. 
Subpart 2 of part C of title IV of the Public Health 
Service Act (42 U.S.C. 285b et seq.) is amended by adding 
at the end the following: 
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‘‘SEC. 424D. PULMONARY FIBROSIS RESEARCH EXPANSION. 
‘‘The Director of the Institute is encouraged to ex-
pand, intensify, and coordinate the activities of the Insti-
tute with respect to research on pulmonary fibrosis, as ap-
propriate.’’. 
SEC. 5. NATIONAL PULMONARY FIBROSIS ACTION PLAN. 
(a) IN GENERAL.— 
(1) PREPARATION OF PLAN.—The Director of 
the Centers for Disease Control and Prevention, in 
consultation with the National Pulmonary Fibrosis 
Advisory Board established under section 317U of 
the Public Health Service Act, as added by section 
3 of this Act, shall prepare a comprehensive plan (in 
this section referred to as the ‘‘National Pulmonary 
Fibrosis Action Plan’’). 
(2) REPORT TO CONGRESS.—Not later than one 
year after the date of the enactment of this Act, the 
Director of the Centers for Disease Control and Pre-
vention shall submit the National Pulmonary Fibro-
sis Action Plan to the Committee on Energy and 
Commerce and the Committee on Appropriations of 
the House of Representatives and to the Committee 
on Health, Education, Labor, and Pensions and the 
Committee on Appropriations of the Senate. 
(b) CONTENT.—The National Pulmonary Fibrosis 
Action Plan shall— 
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(1) focus on strategies to increase public edu-
cation and awareness of pulmonary fibrosis; 
(2) accelerate patient education strategies, with 
respect to pulmonary fibrosis, nationwide; 
(3) address the need for new physician edu-
cation strategies to improve diagnosis and treatment 
standards with respect to pulmonary fibrosis; 
(4) assess and monitor the costs of pulmonary 
fibrosis and its burden on patients and families; and 
(5) develop such strategies in partnership with 
patients, patient advocates, and others with exper-
tise in research and care of pulmonary fibrosis. 
(c) AUTHORIZATION
OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this section 
$1,000,000 for fiscal year 2010. 
SEC. 6. NATIONAL SUMMIT. 
(a) IN GENERAL.—Not later than one year after the 
date of the enactment of this Act, and every three years 
thereafter, the Secretary of Health and Human Services 
shall convene a summit of researchers, representatives of 
academic institutions, Federal and State policymakers, 
public health professionals, and patients, patient advo-
cates, and others with expertise in research and care of 
pulmonary fibrosis to provide a detailed overview of cur-
rent research activities at the National Institutes of 
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Health, as well as to discuss and solicit input related to 
potential areas of collaboration between the National In-
stitutes of Health and other Federal health agencies, in-
cluding the Centers for Disease Control and Prevention, 
related to research, prevention, and treatment of pul-
monary fibrosis. 
(b) FOCUS AREAS.—The summit convened under 
subsection (a) shall focus on— 
(1) a broad range of research activities relating 
to the epidemiology and pathogenesis of pulmonary 
fibrosis; 
(2) clinical research for the development and 
evaluation of treatments for pulmonary fibrosis; 
(3) translational research on evidence-based and 
cost-effective best practices in the treatment, preven-
tion, and management of pulmonary fibrosis; 
(4) information and education programs on pul-
monary fibrosis for health care professionals and the 
public; 
(5) priorities among the programs and activities 
of the various Federal agencies regarding pulmonary 
fibrosis; and 
(6) challenges and opportunities relating to pul-
monary fibrosis for scientists, clinicians, patients, 
and patient advocates. 
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