NDY Letter to HHS Secretary Burwell: Disability Input Needed on Value Based Payment Systems

May 1, 2015

The Honorable Sylvia Mathews Burwell Secretary
Department of Health and Human Services
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, DC 20201

Dear Secretary Burwell:

Although Not Dead Yet gladly signed onto the Partnership to Improve Patient Care (PIPC) letter concerning the importance of including “patients” in the process of developing alternative payment models, we feel so strongly about the urgency of this matter that we decided to send our own letter as well.

First, we want to be clear that including “patients” among the stakeholders requires more than a token representation of the broad and diverse population of health care consumers. We are specifically concerned that people with disabilities and chronic health conditions are adequately represented in the process. While family members and disability-related professionals should also be included, such individuals and related organizations do not substitute for people with disabilities and the organizations that are run by us. In fact, sometimes people with disabilities are at odds with family and professionals about matters of health care policy. It would be unacceptable for HHS to fail to ensure that authentic representation by people with disabilities is included in such groups as the Health Care Payment Learning and Action Network that will accelerate the transition to alternative payment models.

There are two specific areas of concern that we’d like to emphasize and that require direct input from people with disabilities if the efforts of the Better, Smarter, Healthier initiative are to avoid serious pitfalls.

First, it is essential that the initiative develop approaches that put individual patient self-determination as the top priority in establishing the value of health care treatments. PIPC rightly points out that a risk in alternative payment models based on “value” is that “value” may be defined in a “one size fits all” manner that does not recognize differences among patients, potentially undermining the ability of patients and their providers to tailor care for the outcomes that they prefer.   The urgency of avoiding this error cannot be overstated. If the bottom line is a system that determines value based on “majority rule”, that system will fail to meet the needs of individuals and will violate the core principles of self-determination.

Second, there is a risk that definitions of value that have previously been posited by self-appointed “bioethicists” will be foisted upon the stakeholders. Concepts such as “quality adjusted life years” and “disability adjusted life years” inherently devalue people with disabilities and chronic conditions and should not be used as a basis for the work of the initiative.

To ensure that the initiative has the full benefit of the involvement of people with disabilities, we urge you to look to the National Disability Leadership Alliance, which has a Steering Committee of fifteen national organizations run by people with disabilities. (See www.disaabilityleadership.org.)

We look forward to further communication on this important matter.


Diane Coleman, JD
Not Dead Yet