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November 14, 2007

Dear Members of Congress:

We are writing today to ask that as you consider any comparative effectiveness (CE) research provisions in the upcoming Medicare package, you also consider the needs of patients and include three fundamental points:

• There must be an open and transparent process that provides all stakeholders a seat at the table;
• No funds should be provided for comparative cost-effectiveness research, but rather research should focus on therapeutic effectiveness; and
• The results of such research must not be used to deny patients coverage of safe and effective treatments.

While we recognize the value of comparative effectiveness research in helping patients and physicians make individual treatment decisions, we do not believe that this information should be used by Medicare, Medicaid, or private health insurers to make coverage decisions.

Comparative effectiveness research typically compares average results of one therapy versus another for a study population. These results do not take into account differences between patients due to genetics, co-morbidities and other factors. They may not even reflect gender and age differences. Comparative effectiveness research also rarely takes into account differences in patient preferences, including tolerance for side effects and different willingness to balance risk and benefits. In the end, decisions about the most appropriate care for individuals should be made by patients and their doctors, not the government or insurance industry.

We are also concerned that the legislation might not only allow comparative effectiveness research but “cost-effectiveness” research. By definition, cost-effectiveness research places a dollar value on a human life and could result in therapeutically inferior treatments being judged more costeffective. Medicare policy has always been that senior citizens deserve the best care, not the cheapest care—and Federal research should not support analysis that does not recognize that fundamental value both for senior citizens and other Americans.

Patients deserve the medical care they and their doctor think is best for them. Including a prohibition on use of research results to deny benefits is critical if this legislation is to help patients, not hurt them. Thank you for your consideration of our views.

Sincerely,

American Association of People with Disabilities
C3: Colorectal Cancer Coalition
Friends of Cancer Research
Kidney Cancer Association
Men’s Health Network
Mental Health America
National Alliance on Mental Illness
National Association of Nurse Practitioners in Women's Health
National Spinal Cord Injury Association
RetireSafe
Society for Women's Health Research