Inflammatory Bowel Disease Research and Awareness Act - Amends the Public Health Service Act to require the Centers for Disease Control and Prevention (CDC) to: (1) conduct, support, and expand epidemiology research on inflammatory bowel disease (IBD) (i.e., Crohn's disease and ulcerative colitis) in pediatric and adult populations and establish a registry of pediatric IBD patients; (2) enter into cooperative agreements to develop and administer such epidemiology research and the pediatric IBD registry; and (3) award grants to increase awareness of IBD among the general public and health care providers. Requires the Director of the National Institutes of Health (NIH) to include information on IBD research in the biennial reports of NIH to Congress.
Expresses the sense of Congress that the Directors of NIH and the National Institute of Diabetes and Digestive and Kidney Diseases should support specified research and training goals for inflammatory bowel disease.
[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2275 Introduced in House (IH)]
111th CONGRESS
1st Session
H. R. 2275
To support research and public awareness activities with respect to
inflammatory bowel disease, and for other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
May 6, 2009
Mr. Jackson of Illinois (for himself, Mr. Crenshaw, and Mr. Castle)
introduced the following bill; which was referred to the Committee on
Energy and Commerce
_______________________________________________________________________
A BILL
To support research and public awareness activities with respect to
inflammatory bowel disease, and for other purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Inflammatory Bowel Disease Research
and Awareness Act''.
SEC. 2. FINDINGS.
The Congress finds as follows:
(1) Crohn's disease and ulcerative colitis are serious
inflammatory diseases of the gastrointestinal tract.
(2) Crohn's disease may occur in any section of the
gastrointestinal tract but is predominately found in the lower
part of the small intestine and the large intestine. Ulcerative
colitis is characterized by inflammation and ulceration of the
innermost lining of the colon. Complete removal of the colon in
patients with ulcerative colitis can potentially alleviate and
cure symptoms.
(3) Because Crohn's disease and ulcerative colitis behave
similarly, they are collectively known as inflammatory bowel
disease. Both diseases present a variety of symptoms, including
severe diarrhea; abdominal pain with cramps; fever; arthritic
joint pain, inflammation of the eye, and rectal bleeding. There
is no known cause of inflammatory bowel disease, or medical
cure.
(4) It is estimated that up to 1,400,000 people in the
United States suffer from inflammatory bowel disease, 30
percent of whom are diagnosed during their childhood years.
(5) Children with inflammatory bowel disease miss school
activities because of bloody diarrhea and abdominal pain, and
many adults who had onset of inflammatory bowel disease as
children had delayed puberty and impaired growth and have never
reached their full genetic growth potential.
(6) Inflammatory bowel disease patients are at high risk
for developing colorectal cancer.
(7) The total annual medical costs for inflammatory bowel
disease patients are estimated at more than $2,000,000,000.
(8) The average time from presentation of symptoms to
diagnosis in children is three years.
(9) Delayed diagnosis of inflammatory bowel disease
frequently results in more-active disease associated with
increased morbidity and complications.
(10) The National Institutes of Health National Commission
on Digestive Diseases issued comprehensive research goals
related to inflammatory bowel disease in its April 2009 report
to Congress and the American public entitled ``Opportunities
and Challenges in Digestive Diseases Research: Recommendations
of the National Commission on Digestive Diseases''.
SEC. 3. ENHANCING CDC'S PUBLIC HEALTH ACTIVITIES ON INFLAMMATORY BOWEL
DISEASE.
Part B of title III of the Public Health Service Act (42 U.S.C. 243
et seq.) is amended by inserting after section 320A the following:
``SEC. 320B. INFLAMMATORY BOWEL DISEASE EPIDEMIOLOGY RESEARCH AND
PEDIATRIC PATIENT REGISTRY PROGRAM.
``(a) In General.--The Secretary, acting through the Director of
the Centers for Disease Control and Prevention, shall conduct, support,
and expand epidemiology research on inflammatory bowel disease in both
pediatric and adult populations and establish a registry of pediatric
IBD patients.
``(b) Cooperative Agreement.--In carrying out subsection (a), the
Secretary shall enter into a cooperative agreement with a nonprofit
organization with expertise and experience in conducting inflammatory
bowel disease research to develop and administer the epidemiology
research and registry program, including--
``(1) expansion of existing IBD epidemiology program
research activities within the National Center for Chronic
Disease Prevention and Health Promotion; and
``(2) establishment, within one year of enactment of this
section, of a population-based registry of pediatric IBD
patients for the purposes of data collection, research, and
patient services.
``(c) Pediatric IBD Registry.--
``(1) Focus.--The pediatric IBD registry established under
this section shall focus on, but not be limited to, data
collection, storage and analysis regarding--
``(A) the incidence and prevalence of pediatric IBD
in the United States;
``(B) genetic and environmental factors associated
with pediatric IBD;
``(C) age, race or ethnicity, gender, and family
history of individuals diagnosed with pediatric IBD;
and
``(D) treatment approaches and outcomes in
pediatric IBD.
``(2) Additional requirements.--In establishing the
pediatric IBD registry under this section, the Secretary
shall--
``(A) identify, build-upon, and coordinate with
existing public and private surveillance systems
related to pediatric IBD; and
``(B) establish a secure communication mechanism
within the registry to facilitate patient contact with
researchers studying the environmental and genetic
causes of pediatric IBD or conducting clinical trials
on pediatric IBD.
``(d) Definition.--In this section, the term `IBD' means
inflammatory bowel disease.
``(e) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $3,500,000 for each of the
fiscal years 2010 through 2014.
``SEC. 320C. INCREASING PUBLIC AWARENESS OF INFLAMMATORY BOWEL DISEASE
AND IMPROVING HEALTH PROFESSIONAL EDUCATION.
``(a) In General.--The Secretary, acting through the Director of
the Centers for Disease Control and Prevention, shall award grants to
eligible entities for the purpose of increasing awareness of
inflammatory bowel disease among the general public and health care
providers.
``(b) Use of Funds.--The Secretary may not award a grant under this
section to an eligible entity unless the entity agreed to use the grant
to develop educational materials and conduct awareness programs focused
on inflammatory bowel disease, including with respect to the following
subjects:
``(1) Crohn's disease and ulcerative colitis and their
symptoms.
``(2) Testing required for appropriate diagnosis and the
importance of accurate and early diagnosis.
``(3) Key differences between pediatric and adult disease.
``(4) Specific physical and psychosocial issues impacting
pediatric patients, including stunted growth, malnutrition,
delayed puberty, and depression.
``(5) Treatment options for both adult and pediatric
patients.
``(6) The importance of identifying aggressive disease in
children at an early stage in order to implement the most
effective treatment protocol.
``(7) Complications of inflammatory bowel disease and
related secondary conditions, including colorectal cancer.
``(8) Federal and private information resources for
patients and physicians.
``(9) Incidence and prevalence data on pediatric and adult
inflammatory bowel disease.
``(c) Report to Congress.--Not later than September 30, 2010, the
Secretary shall report to the Committee on Energy and Commerce of the
House of Representatives, the Committee on Health, Education, Labor,
and Pensions of the Senate, and the Committees on Appropriations of the
House of Representatives and the Senate regarding the status of
activities under this section.
``(d) Eligible Entity.--To carry out this section, the term
`eligible entity' means a nonprofit patient or professional
organization with experience in serving adults and children with
inflammatory bowel disease.
``(e) Authorization of Appropriations.--For the purpose of carrying
out this section, there is authorized to be appropriated $2,000,000 for
each of fiscal years 2010 through 2014.''.
SEC. 4. SENSE OF CONGRESS ON EXPANSION OF BIOMEDICAL RESEARCH ON
INFLAMMATORY BOWEL DISEASE.
It is the sense of the Congress that--
(1) the Secretary, acting through the Director of the
National Institutes of Health and the Director of the National
Institute of Diabetes and Digestive and Kidney Diseases (in
this section referred to as the ``Institute'') should
aggressively support basic, translational, and clinical
research designed to meet the research goals for inflammatory
bowel disease (in this section referred to as ``IBD'') included
in the National Institutes of Health National Commission on
Digestive Diseases report entitled ``Opportunities and
Challenges in Digestive Diseases Research: Recommendations of
the National Commission on Digestive Diseases'', including by--
(A) establishing an objective basis for determining
clinical diagnosis, detailed phenotype, and disease
activity in IBD;
(B) developing an individualized approach to IBD
risk evaluation and management based on genetic
susceptibility;
(C) modulating the intestinal microflora to prevent
or control IBD;
(D) effectively modulating the mucosal immune
system to prevent or ameliorate IBD;
(E) sustaining the health of the mucosal surface;
(F) promoting regeneration and repair of injury in
IBD;
(G) providing effective tools for clinical
evaluation and intervention in IBD; and
(H) ameliorating or preventing adverse effects of
IBD on growth and development in children and
adolescents;
(2) the Institute should support the training of qualified
health professionals in biomedical research focused on IBD,
including pediatric investigators; and
(3) the Institute should continue its strong collaboration
with medical and patient organizations concerned with IBD and
seek opportunities to promote research identified in the
scientific agendas ``Challenges in Inflammatory Bowel Disease
Research'' (Crohn's and Colitis Foundation of America) and
``Chronic Inflammatory Bowel Disease'' (North American Society
for Pediatric Gastroenterology, Hepatology and Nutrition).
SEC. 5. BIENNIAL REPORTS.
Section 403(a)(5) of the Public Health Service Act (42 U.S.C.
283(a)(5)) is amended--
(1) by redesignating subparagraph (L) as subparagraph (M);
and
(2) by inserting after subparagraph (K) the following:
``(L) Inflammatory bowel disease.''.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
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