Digestive Disease National Coalition

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Digestive Disease National Coalition

• Key Legislative
• Priorities - 2009

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• RESEARCH

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Emerging Opportunities for Research Funding

• A new congress, a new administration.
• The economic stimulus package.
• FY 2009 appropriations.
• FY 2010 appropriations.
• Congress must view the economic stimulus funding
  as a new commitment to research, and continue to
  provide agencies like NIH with systematic,
  meaningful funding increases on an annual basis
  moving forward.

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The National Commission on Digestive Diseases
(NCDD)

• The NCDD recently released a comprehensive,
  long-range research plan entitled, Opportunities
  and Challenges in Digestive Disease Research
  Recommendations of the NCDD.
• Many members of the DDNCs diverse coalition
  served on the Commission and assisted in drafting
  the research plan.
• This plan contains recommendations regarding
  nearly every digestive ailment and is important
  to the DDNCs entire membership.

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The National Commission on Digestive Diseases
(cont.)

• To advance the NCDD report and ensure that its
  recommendations are enacted, the DDNC is asking
  Congress to
• Use all opportunities to raise awareness of this
  important document.
• Urge NIH to identify NCDD initiatives that are
  well suited to effectively use stimulus funds.
• Direct NIDDK to create an advisory body to guide
  implementation of the plan from start to finish.
• Require NIDDK to provide annual updates on the
  progress of the plans implementation.

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• PATIENT CARE

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Funding Opportunities to Improve Patient Care

• The chronic underfunding of the FDA has created
  numerous impediments to drug development and
  oversight.
• FDA has been receiving meaningful funding
  increases in recent years.
• Significant funding increases must be continued
  moving forward.
• With additional resources, FDA must begin making
  efforts to better serve patient communities
  through expedited treatment development and
  improved oversight.

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The Colorectal Cancer Prevention, Early
Detection, and Coverage Act (H.R.1189)

• H.R. 1189 was recently introduced by
  Congresswoman Kay Granger (R-TX-12th) and 11
  bipartisan cosponsors.
• The bill would establish a national colorectal
  cancer screening program at the CDC and improve
  treatment options for patients found to have
  colorectal cancer.
• Ask your House Representative to Please
  cosponsor the Colorectal Cancer Prevention, Early
  Detection, and Coverage Act (H.R. 1189).

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Compassionate Allowances Process

• Last year the Social Security Administration
  (SSA) launched an initiative called the
  compassionate allowances process to expedite the
  processing of disability claims for applicants
  whose medical conditions are so severe that they
  obviously meet the appropriate standards.
• Many digestive conditions, such as esophageal
  cancer and pancreatic cancer are part of the
  initial program.
• SSA has stated this initiative will be expanded
  moving forward, and the DDNC strongly supports
  expansion.

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• Prevention and Public Awareness

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Appropriate Labeling

• Many digestive disease patients have allergic,
  autoimmune reactions when they contact certain
  items.
• The FDA and the USDA must improve their labeling
  of food and drug products so that these patients
  have adequate information to make healthful
  decisions regarding what they contact or ingest.

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The Pancreatic Cancer Research and Education Act
(H.R. 745)

• H.R. 745 was introduced by Congresswomen Anna
  Eshoo (D-CA-14th) and Ginny Brown Waite
  (R-FL-5th).
• This bill would coordinate federal research and
  treatment resources to improve the 5 year
  survival rate for pancreatic cancer.
• Ask your House Representative to Please
  cosponsor the Pancreatic Cancer Research and
  Education Act (H.R. 745).

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• Liver Disease

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Hepatitis Funding

• The CDCs Division of Viral Hepatitis
  desperately needs additional resources.
• Experts estimate that the Division requires 100
  million to adequately confront viral hepatitis.
• However, the agency currently receives
  approximately 18 million annually.
• As Congress works to craft FY 2010 spending
  legislation, urge your legislators to support an
  allocation of 50 million for the Division.

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The Liver Research Enhancement Act (H.R. 1128)

• H.R. 1128 was recently introduced by Congressmen
  Stephen Lynch (D-MA-9th) and Peter King
  (R-NY-3rd).
• This bill would establish the National Center on
  Liver Disease Research within NIDDK to further
  coordinate liver disease research efforts.
• Ask your House Representative to, Please
  cosponsor the Liver Research Enhancement Act
  (H.R. 1128).

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• Healthcare
• Reform

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The DDNCs 3 principles for Healthcare Reform

• The social security disability waiting period
  must be systematically phased out to ensure that
  those patients who are most ill receive quality
  care and continuous treatment.
• Primary prevention and clinical preventative
  services must receive increased federal support
  and emphasis to ensure that the incidence of
  costly, preventable conditions is reduced.
• Coverage must be expanded and the physician
  workforce must be bolstered, particularly in
  underserved areas, to ensure that every American
  has access to quality care.

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• Messages to Remember

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1) Please commit to providing NIH and other
federal research entities with meaningful funding
increases on an annual basis.
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2) Please raise awareness of the NCDDs crucial
digestive disease research plan, and urge NIH to
implement the Commissions research
recommendations.
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3) Please be mindful of the DDNCs 3 principles
for healthcare reform, and please support
legislative efforts which advance these
principles.
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Question and Answer Session