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Public Comments

FasterCures Signs Comparative Effectiveness Research Letter
Jan 14, 2010

The Honorable Harry Reid                                       The Honorable Nancy Pelosi
Senate Majority Leader                                           Speaker of the House                                                               United States Capitol, S-221                                   United States Capitol, H-232                                        Washington, D.C. 20510                                         Washington, D.C. 20510

Dear Majority Leader Reid and Madame Speaker Pelosi:

We are writing to stress the critical importance of ensuring that the final healthcare reform bill contains comparative effectiveness research (CER) provisions that are centered on the needs of patients and healthcare providers. We believe that CER holds tremendous promise to improve the quality of healthcare by better informing patients and their healthcare providers about the best treatment options that meet their individual needs. Likewise, we also have concerns about the potential for unintended harm to patients if CER is developed or used in ways that ignore the patient’s needs or prevent physicians and patients from choosing the treatment that best meets their individual needs.

Thus, we ask that you include the CER provisions contained in the current Senate-passed healthcare bill (H.R. 3590) which have garnered broad support from over 100 organizations in the patient, provider, disability, and academic research communities. The Senate’s patient-centered CER approach provides a sound framework for independent, sustained, and objective research that is focused on the needs of patients.

Specifically it accomplishes this by establishing an independent institute charged with coordinating and guiding comparative effectiveness research programs. This approach strikes the balance needed to ensure that all stakeholders have equal input in the governance while preserving the valuable role of the already established and highly-respected governmental research agencies. An open and transparent process where patients and providers are included in the governance, particularly in setting research priorities and drafting study designs, is a critical component to true patient-centered CER. This is the approach that will ensure the research will be independent, credible, and have the buy-in of all stakeholders. Equally important, the Senate CER language ensures the CER program will focus on communicating results and findings, not establishing national guidelines or coverage policies. It also strengthens the focus on clinical effectiveness research, not cost-effectiveness; and it ensures that the Centers for Medicare & Medicaid Services will not misuse CER results in ways that overlook differences in patient needs or discriminate against elderly or people with disabilities.

Finally, in order for patients and providers to adopt CER findings, the studies must be trustworthy and objective. The Senate bill contains strong provisions to protect the scientific integrity of the research and protect the program from inappropriate political influence.

The President and Congress have committed to establishing a patient-centered CER program. We believe the Senate language more fully accomplishes that goal, and urge that the final bill include the Senate CER provisions.

Sincerely,

Alliance for Aging Research
Alliance for Patient Access
American Academy of Otolaryngology-Head and Neck Surgery
American Association for Cancer Research
American Association of People with Disabilities
American Association of Neurological Surgeons
American Gastroenterological Association
American Society of Plastic Surgeons
American Urological Association
Association of Black Cardiologists
Association of Clinical Research Organizations
Autism Society of America
Colon Cancer Alliance
Congress of Neurological Surgeons
Easter Seals
Epilepsy Foundation of America
FasterCures
Incontinentia Pigmenti International Foundation
MANA
National Alliance for Mental Illness
National Spinal Cord Injury Association
Plasma Protein Therapeutics Association
UCP
RetireSafe
Sudden Cardiac Arrest Association
The AIDS Institute
Tuberous Sclerosis Alliance
United Spinal Association
VHL Family Alliance
WomenHeart

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