Patient, Consumer, and Public Health Coalition, September 10, 2019
Dear ____:
RE: Reauthorize the Patient-Centered Outcomes Research Institute (PCORI)
As members of the Patient, Consumer, and Public Health Coalition, we are writing to express our strong support for the reauthorization of the Patient-Centered Outcomes Research Institute (PCORI).
Federal agencies spend billions of dollars each year on medical research and prevention programs, but most of those dollars do not support research that compares the safety or effectiveness of different types of medical treatments or prevention strategies. Even when such research is conducted, most do not focus on the measures of safety and effectiveness that matter most to patients. For example, many cancer drugs are effective at shrinking cancer tumors, but fewer cancer drugs help patients live longer and with a better quality of life. Many antidepressants have serious side effects that can result in an increase in violence and suicide. Some may even contribute to mass shootings.
PCORI is unique because it supports research designed to improve the quality of medical treatments and disease prevention efforts. It was created as part of the Affordable Care Act because information about what treatments work best for which patients can save lives and also make healthcare more affordable.
PCORI has invested nearly $2.4 billion in more than 600 patient-centered comparative effectiveness studies and related projects. For example, a recently published PCORI study found two very effective strategies for reducing insomnia among cancer patients, neither of which involved insomnia medications with dangerous side effects. A recently published study of African American children with asthma found that their asthma could be effectively treated with less frequent use of inhalers. These studies take years to complete and are not the types of studies that industry conducts, because there is no financial incentive for them to do so.
PCORI’s Congressionally mandated mission is to do research that is not supported by federal agencies. Its work will save lives and will reduce the skyrocketing cost of medical care in the U.S.
PCORI deserves continued generous support from Congress. Lives depend on it.
Sincerely,
Cancer Prevention and Treatment Fund
Association for Medical Ethics
American Medical Women’s Association
Advocating Safety in Healthcare E-Sisters
Breast Cancer Action
DES Action
National Consumers League
National Organization for Women
National Women’s Health Network
Med Shadow
Our Bodies Ourselves
Patient Safety Action Network
The TMJ Association
Washington Alliance for Patient Safety
Woody Matters