Federal study finds QALYs restrict access to lifesaving healthcare for people with disabilities

For Immediate Release                                           

WASHINGTON – Today, the National Council on Disability (NCD)—an independent federal agency– released a study examining “Quality-Adjusted Life Years” (QALYs) as a health care cost-effectiveness measure that guides coverage decisions regarding drugs and treatments by private and public health insurers.

As the cost-effectiveness measure gains popularity among prominent nonprofit corporations and professional associations in the U.S., Quality-Adjusted Life Years and the Devaluation of Life with Disability examines the potential of limiting access to lifesaving medications and treatments for people with disabilities and those with chronic illnesses by its use.

The report identifies the use of QALYs by other countries to curb healthcare spending and analyzes whether or not the long opposition to QALYs by the disability community is well-founded based on its impact on access to care.

In its review, NCD found QALYs calculations often rely upon a quantification of the value of a year of life with a disability that is lower than an individual without a disability as a baseline assumption that can correlate with a quality of life assessment, resulting in a denial of care in consideration of cost.

“The perception that people with disabilities do not have a high quality of life is based on old stereotypes from a bygone era,” said NCD Council Member Clyde Terry. “Purely measuring the quality of life based on cost-effective outcomes starts with a premise of counting a person with a disability as less than whole, producing inherently discriminatory outcomes.”

In its study, NCD found sufficient evidence of discriminatory effects of the measure to warrant concern, including: concerns raised by bioethicists, patient rights groups, and disability rights advocates; and the inability of patients to obtain coverage of needed healthcare in countries where QALYs are used frequently. NCD also found that when the state of Oregon attempted to apply QALYs to its Medicaid state plan in the 1990s, it was found to violate the Americans with Disabilities Act as inherently discriminatory.

Due to the rapidly rising cost of healthcare, spending has become a major concern for healthcare policymakers and public and private insurers. Despite the growing understanding that disability is a normal part of the human experience, negative biases and inaccurate assumptions about the quality of life of a person with a disability persist in the medical context, and these biases can have serious and even deadly consequences when insurers refuse to cover the cost of medicines and treatments based on a cost-benefit analyses that rely upon faulty premises.

Key findings and recommendations from Quality-Adjusted Life Years and the Devaluation of Life with Disability include:

Key Findings:

• The United States Federal Government does not have a single, comprehensive policy on the use of QALYs. It has considered increasing its utilization of cost-effectiveness research and has also rejected the idea at different points in time, leading to inconsistent policies across federal agencies. Some agencies are banned from using QALYs to make benefits and coverage decisions, while others use it frequently.
• There has been increasing interest by the U.S. Federal Government in reducing the cost of healthcare by modeling parts of its national health insurance programs after the health care systems of other countries, such as the United Kingdom. Several of these countries utilize QALYs to make benefits and coverage decisions. The coverage denials and loss of access to care faced by people with disabilities in these countries illustrate what might happen if the United States made a similar choice.
• Cost-effectiveness research (including QALYs) is one of many different types of evidence insurers consider when making their decisions. There is little transparency in insurers’ internal decision-making processes.
• There are alternatives to the use of QALYs, ranging from well-established methods regularly used by U.S. federal agencies already, such as cost-benefit analysis, to unexplored but promising alternatives such as value frameworks that use patient preferences to determine the value of healthcare treatments.

Key Recommendations:

• When enacting health reform bills, Congress should avoid creating provisions of any bill that would require the agency with management and oversight responsibilities to cover only the most cost-effective drugs and treatments or to require the agency to impose restrictions on less cost-effective treatments.

• Congress should pass legislation prohibiting the use of QALYs by Medicaid and Medicare and provide funding to the U.S. Department of Health and Human Services (HHS) for research on best practices on the use of cost-effectiveness to inform benefits and coverage decisions with respect to Medicare and Medicaid. “Best practices” in this case refer to a means of utilizing cost-effectiveness research that facilitates greater access to care, and does not reduce access to care for people with chronic health conditions and disabilities.

• DOJ and HHS Office of Civil Rights should jointly issue guidance clarifying that the ADA applies to coverage programs that states operate such as Medicaid. Additionally, guidance should clarify that Section 504 of the U.S. Rehabilitation Act and Section 1557 of the Affordable Care Act apply to health insurance programs operated by recipients of federal financial assistance from HHS. The guidance should specifically discuss how these authorities apply to benefits and reimbursement decisions, and that payment decisions should not rely on cost-effectiveness research driven by QALYs.
• HHS Centers for Medicare and Medicaid Services (CMS) should utilize well-established alternatives, such as Multi-Criteria Decision Analysis, which is a method that better acknowledges the complexity of healthcare coverage decisions, or cost-benefit analysis, when the exact benefits and costs of a drug or treatment are known.

Read this and all of the reports in NCD’s Bioethics and Report Series at https://ncd.gov/publications/2019/bioethics-report-series

About NCD’s Bioethics and Disability Series

NCD’s bioethics and disability report series focuses on how historical and current devaluation of the lives of people with disabilities by the medical community, researchers, and health economists perpetuates unequal access to medical care, including life-saving care. NCD has released the following reports: Organ Transplant Discrimination Against People with Disabilities; The Danger of Assisted Suicide Laws; Genetic Testing and the Rush to Perfection; Quality-Adjusted Life Years and the Devaluation of Life with a Disability; and will release its final report, Medical Futility and Disability Bias on November 20.

About the National Council on Disability

First established as an advisory council within the Department of Education in 1978, NCD became an independent federal agency in 1984. In 1986, NCD recommended enactment of an Americans with Disabilities Act (ADA), and drafted the first version of the bill which was introduced in the House and Senate in 1988. Since enactment of the ADA in 1990, NCD has continued to play a leading role in crafting disability policy, and advising the President, Congress and other federal agencies on disability policies, programs, and practices.

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