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July 21, 2009

The Honorable Donna Christensen
The Honorable Jay Inslee
The Honorable Fred Upton
The Honorable Greg Walden

U.S. House of Representatives

Washington, DC  20515

Dear Representatives Christensen, Inslee, Upton and Walden:

The Consortium for Citizens With Disabilities (CCD) Health Task Force is writing in strong support of your amendment on comparative clinical effectiveness research (CER) as an essential step to advance CER that is centered on the needs of patients and providers and improves health care quality.

CCD supports comparative effectiveness research as an important element of health care reform that, if appropriately structured, can have a significant benefit for people with disabilities.  As organizations representing people with disabilities, their providers and advocates, we believe the goal of CER is critical to improving clinical decision-making.   In order to achieve this, CER must include several important elements, which are reflected in your amendment. These include provisions to: provide assurance throughout the CER program that research meets the needs of all consumers and patients, including racial and ethnic minorities and people with disabilities; establish safeguards to preserve patient access to high quality care and support the ability of providers to tailor care to the needs of the individual; and require open and transparent processes where patients and providers have input into research priorities and study design and an equal voice in governance of a CER entity.

CCD is extremely pleased that your amendment closely mirrors the patient-centered language of HR 2502 and S 1213, as well as incorporating provisions on health disparities and minority health priorities.  CCD is extremely grateful for the work that you are doing to advance legislation on comparative effectiveness research that is truly centered on the needs of consumers, patients and people with disabilities.

Sincerely,

Consortium for Citizens with Disabilities (CCD)