Recent Polling Finds Strong Support for Congress to End Use of Discriminatory Metrics Across Federal Programs

Ten years after the Partnership to Improve Patient Care released its first public opinion survey, our latest poll underscores how vitally important it is for lawmakers to maintain and strengthen safeguards for patients and people with disabilities in all health care policies.

In our new survey, 82 percent of respondents said they are concerned about government policies that are based on assessments of comparative or cost-effectiveness because these assessments could have “unintended consequences for patients who don’t fit the average.” In addition, 81 percent of respondents agreed that current safeguards protecting against misuse of comparative and cost-effectiveness assessments should be strengthened by Congress.

Unfortunately, the Build Back Better Act currently being debated by Congress misses the opportunity to strengthen current safeguards in its drug pricing provisions, giving Medicare new powers to make judgments regarding the value of treatments with little assurance that it will seek and incorporate patient perspectives on the value of their care. While I strongly agree that it is important to take action to improve drug affordability, I have always believed just as strongly that this must not be done at the expense of patients and people with disabilities.

We were heartened to see the National Council on Disability — an independent federal agency that advises Congress and the administration on disability policy — recently come out with targeted recommendations to strengthen the BBBA by including meaningful protections against government use of discriminatory cost-effectiveness thresholds based on the quality-adjusted life year. This recommendation represents an important step in protecting patients and patients with disabilities.

In simplest terms, the BBBA creates a new process and government authority to make judgments about a treatment’s value, but it lacks the kind of strong patient safeguards that Congress chose to include in the Affordable Care Act.

The bill does include one provision stating that Medicare’s consideration of comparative effectiveness must consider the effects of products on specific patient subgroups and populations, including people with disabilities and the elderly, and this is an important step in the right direction. However, these safeguards do not apply across the assessment process, and it includes no procedural requirements to ensure patients and people with disabilities have a seat at the table.

For example, the bill also authorizes Medicare to decide whether a treatment represents an advance of existing treatments and the extent to which it helps address an unmet medical need. As I know from personal experience and as respondents to our survey indicated in their answers, the conclusions that Medicare reaches in support of a cost-cutting goal based on average assessments could be far different than those reached by individual patients, caregivers and physicians.

In this regard, the BBBA should look to the ACA’s provisions protecting patients and people with disabilities from one-size-fits-all decisions in Medicare reimbursement, coverage and incentive programs. Any health reform legislation should take patient protections as seriously as it takes patient affordability. By this measure, the current BBBA misses an opportunity to make it clear those ACA protections extend across federal programs, including throughout these new drug pricing proposals.

I’m encouraged by the growing momentum we’re seeing in support of legislative action to ensure QALYs and similar metrics are not used in our public programs. The recent letter from the National Council on Disability called for the inclusion of an unambiguous ban on QALYs within the text of the BBBA and further encouraged Congress to utilize the reconciliation package as an opportunity to expressly prohibit the use of the QALY within Medicaid and Medicare. Democrats and Republicans are both on record opposing the use of QALYs and this moment is a rare opportunity to unambiguously end their use in federal programs. Polling shows that Americans do not want veterans, people with disabilities, or older adults subjected to the discrimination that is inherent in one-size-fits-all policies driven by QALYs and similar metrics.

Our poll shows that 85 percent of Americans are concerned about the use of cost-effectiveness studies as a determining factor in Medicare coverage and payment decisions if it means seniors and people with disabilities will be less able to access the medicines they need. Most people, especially older adults, opposed the use of studies that rely on the QALY. People don’t want costs or studies based on the “average” patient to drive their health care. They overwhelmingly support the current statutory bar on using QALYs in Medicare decision-making and 7 in 10 even supported expanding this safeguard to Medicaid. A majority of respondents also opposed the current use of the QALY by the Department of Veterans Affairs in its formulary development.

Our new survey results are important as Congress continues its work on policies impacting access to health care, particularly as part of the Build Back Better Act. We hope Congress will heed the recommendations from the National Council on Disability to expand existing protections for patients and people with disabilities so that many Americans are protected from health care discrimination. Despite the long history in the United States acknowledging that metrics like QALYs discriminate, their use is rising — not falling.

Let’s finally end the ambiguity and prohibit QALYs altogether. We must elevate the voice of patients and people with disabilities in any process that seeks to establish the value of their care.

Tony Coelho, current chair of the Partnership to Improve Patient Care, served as a congressman from California from 1979 to 1989; he was a House majority whip and an original author and sponsor of the Americans with Disabilities Act.

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