NCIL Membership Adopts Resolution Opposing Health Insurers’ Use of QALYs

The membership of the National Council on Independent Living unanimously adopted a Resolution Opposing the Use of QALYs (Quality Adjusted Life Years) in all decisions concerning health care coverage. The Resolution was jointly developed by Not Dead Yet and the Autistic Self Advocacy Network for consideration in conjunction with NCIL’s Annual Conference held virtually beginning in July.

The National Council on Independent Living is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

NCIL will post the proceedings of the Annual Conference, including the Resolution, to their website after the conference events. The full text of the Resolution is below (and separately here):

NCIL Resolution Opposing the Use of QALYs (Quality Adjusted Life Years)

WHEREAS, the Quality Adjusted Life Year (QALY) is a tool that estimates the value of a treatment according to years of additional life, discounted by level of disability; and

WHEREAS, the QALY therefore weighs the value of a year of disabled life as less than the value of a year of nondisabled life; and

WHEREAS, health programs, including state Medicaid authorities and health insurance companies, have shown interest in using the QALY to limit health care treatment coverage since the 1990’s and perhaps earlier; and

WHEREAS, when the state of Oregon attempted to apply QALYs to its Medicaid state plan in the 1990s, federal authorities found that Oregon’s proposal violated the Americans with Disabilities Act as inherently discriminatory; and

WHEREAS, Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act prohibit federal and state health care programs from engaging in discrimination against people with disabilities; and

WHEREAS, Section 1557 of the Affordable Care Act similarly prohibits disability-based discrimination by health care providers; and

WHEREAS, health care coverage policies that prioritize people without disabilities are engaging in disability discrimination within the meaning of the Rehabilitation Act, Americans with Disabilities Act, and Affordable Care Act; and

WHEREAS, the National Council on Disability (NCD) has found a significant likelihood that the QALY will result in health care coverage decisions that discriminate against people with disabilities; and

WHEREAS, the disability community has a long history of experiencing discrimination in medical contexts, including through discriminatory denial of life-saving medical care; and

WHEREAS, Congress has prohibited the use of the QALY by certain federal agencies, particularly health-related agencies, or severely limited how they could utilize QALYs, in the Affordable Care Act; and

WHEREAS, the Affordable Care Act, prohibits the Patient Centered Outcomes Research Institute (PCORI) from using QALYs or any other similar measure that “discounts the value of a life because of an individual’s disability,” as a “threshold” for determining what type of health care is cost-effective, and from using QALYs when developing healthcare coverage, incentives, or reimbursement programs; and

WHEREAS, Medicare is similarly prohibited from utilizing “cost-effectiveness research” in a manner that treats “extending the life” of an elderly, ill, or disabled person as of less value than “extending the life” of someone who is none of the above; and

WHEREAS, despite laws banning or limiting use of QALYs, there has been increasing interest among national health insurance programs (like Medicaid), as well as actual practice among private health insurance companies, and pharmacy benefit managers in using QALYs to inform their decisions about which drugs and treatments they will cover;

THEREFORE BE IT RESOLVED that NCIL opposes the use of the QALY in all decisions concerning health care coverage; and

BE IT FURTHER RESOLVED that NCIL will provide technical assistance to CILs to raise awareness that the use of QALYs in health care coverage decisions is discriminatory and will encourage and advise local and state efforts to ban the use of QALYs; and

BE IT FURTHER RESOLVED that NCIL will work with Congress, the Department of Health and Human Services Office of Civil Rights, Department of Justice, and other relevant state and local agencies to educate stakeholders and ensure that QALYs are not used in decisions concerning public and private health care coverage.