Making the Voices of Patients with Hearing Losses Matter In Value Assessments
LEARN HOW VALUE ASSESSMENTS DE-VALUE OUR LIVES...
AND RESTRICTS ACCESS TO CARE PATIENTS WITH HEARING LOSSES NEED.
ECHOING THE CALL AGAINST QALYS
Many prominent disability rights groups, patient advocates, and independent federal agencies, such as the National Council on Disabilities (NCD), have called for an outright ban on the use of QALYs to guide coverage and reimbursement decisions in both public and private programs due to the QALYs discriminatory nature. The Deaf Health Coalition echoes these calls, and advocates against any metrics used to inform coverage and reimbursement decisions that prioritizes patients without hearing losses before patients with hearing losses. Individuals with hearing losses are already less likely to have quality health insurance and are more likely to experience a wide range of neurological and chronic conditions that impact their quality of life due to social determinants of health. To prevent exacerbating these issues, DHC and our allies strongly oppose the use of QALYs in value assessment and/or health technology assessments (HTA). Legislators at both the state- and federal-level, including healthcare stakeholders who influence coverage decisions, should avoid QALY-based policies and methods that would ultimately result in restricted access to the life-saving and novel medical interventions individuals with hearing losses could benefit from before others.
Congress, through the passing of the ADA and ACA, has prohibited or limited the use of QALYs by federal and state-level health agencies, including Medicare and Medicaid. Despite the prohibition against QALY use in healthcare, there are currently misguided discussions around efforts to reign in high health care costs in the U.S. which has led to an increasing interest among payers, including Medicaid and the Veterans Health Administration, as well as other public and private payers, to leverage QALY-based value assessments as a mechanism for determining which heath interventions they'll cover. Not only do we believe this is a clear violation of the ADA, it is a flawed strategy to address rising health care costs and moreover, has severe implications on individuals with hearing losses and their ability to access the appropriate medical interventions they need. DHC believes the use of QALYs in guiding coverage and reimbursement decisions is not just a political issue, but a civil rights one.
HOW DO QALYS DISCRIMINATE AGAINST INDIVIDUALS WITH HEARING LOSSES?
The use of quality-adjusted life-years (QALYs) in guiding healthcare decision-making is a prominent issue currently being debated among healthcare stakeholders, policy makers, medical ethicists, disability rights organizations, and patient advocates. This debate is largely due to the well-known discriminatory nature of QALYs on individuals with disabilities, including those with hearing losses, and its impact on restricting access to much needed medical interventions.
In short, the QALY is a metric often used in value assessments or cost-effectiveness analyses by health economists attempting to understand the value, or "appropriate price", of a medical technology or treatment. Insurers, both public and private, and despite prohibitions in the ADA and ACA, often leverage QALY-based value assessments to determine whether or not they will cover and reimburse a particular health intervention, thus, ultimately determining whether the intervention of interest will be made easily accessible to patients. The legal and ethical debates surrounding the use of QALYs in healthcare decision making stems largely from research suggesting the metric, by nature, discriminates against individuals with disabilities, the elderly, and individuals with chronic conditions.
To understand the discriminatory nature of QALYs, it's important to first understand how QALYs and their underlying health utilities are calculated. QALYs represent a number between "0 and 1", where "0" means death and "1" reflects a patient in perfect health. To calculate a QALY, researchers must assign an arbitrary value to a person’s life. Because the value assigned to the elderly, individuals with pre-existing chronic conditions or disabilities such as hearing loss, is lower than that of younger, 'healthier' hearing individuals, it could lead policymakers and health insurers to assume that medical technologies and treatments for individuals with hearing losses--many of whom are elderly, veterans and are more likely to experience chronic conditions and other disabilities compared to the average patient--are not worth covering. At the very core, the QALY metric devalues the lives of all patients with hearing losses while also devaluing the potential benefits novel health interventions could have on patients with hearing losses compared to younger, 'healthier', hearing patients. This ultimately limits individuals with hearing losses' ability to access the innovative medical devices and treatments they may need and benefit from more so than others. If policymakers and health insurers leverage findings from QALY-based value assessments to guide healthcare decision making, it will further exacerbate current issues that prevent individuals with hearing losses from being able to fully participate in society.
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QALY BANS IN HEALTHCARE
While federal legislation such as the ADA, ACA, and Rehabilitation Act all contain provisions which protect individuals with hearing losses and other disabilities, including veterans, against discrimination in healthcare, this hasn't stopped policymakers at both the federal and state level from continuing to introduce bills which leverage the QALY metric to guide coverage and reimbursement decisions and ultimately, patient access. As history has shown below, numerous state legislatures have unsuccessfully introduced bills that would have allowed both Medicare and Medicaid to leverage QALYs as a tool for determining patient access to medical interventions.
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In 1992, Oregon state legislature attempted to expand Medicaid eligibility through the implementation of a QALY-based rationing system that would have heavily restricted access to health interventions and treatments for individuals with hearing losses and other disabilities. The H.W. Bush administration struck this proposal down, citing Oregon's actions and the discriminatory nature of QALY-based policies violated the Americans with Disabilities Act.
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In 2020, Oklahoma became the first state to ban the use of QALYs in healthcare. Oklahoma legislature introduced and passed H.B.2587, a bill that prohibited health agencies from developing a dollar per quality adjusted life year metric would discount the lives of individuals with hearing losses and other disabilities compared to those without a disability.
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Despite lessons learned, states such as Washington, North Dakota, New York, Hawaii, Pennsylvania and others are currently considering or have introduced bills that would leverage QALY-based value assessments to determine patient access to medical interventions. DHC and our allies strongly urge these state legislators to rescind any discriminatory policy proposals that would restrict access to live-saving medical interventions that individuals with hearing losses may benefit from more than others, and further call on all state legislatures to pursue more culturally competent policies that would improve access to the high value health care individuals with hearing losses need in order to live long, healthier lives as fully functioning members of society.
WHO IS THE INSTITUTE FOR CLINICAL AND ECONOMIC REVIEW (ICER)?
Unlike countries outside of the United States whose government-run health systems leverage QALY-based value assessments to systematically determine patient access to health interventions, the U.S. does not have an official health technology assessment body. However, one independently-funded value assessor based in the U.S., the Institute for Clinical and Economic Review (ICER), has been gaining influence among policymakers and healthcare decisionmakers despite increasing criticism from patient and disability rights advocates due to ICER's use of QALYS when assessing the value and 'appropriate cost' of various health interventions. While ICER's recommendations and assessments of value are non-binding in determining coverage and reimbursement decisions compared to the government-run health systems of ex-US countries, ICER's value assessments are increasingly referenced by health insurers and policymakers, including the Veterans Affairs and Medicare, who seek to reign in healthcare spending by limiting access to health interventions ICER deemed not cost-effective. Not only is this a flawed and unethical strategy to control budgetary spending, the formal adoption of QALY-based value assessments sets a dangerous precedent that will only further restrict access to the innovative health interventions individuals with hearing losses, veterans, and those with other disabilities or chronic conditions may need more than others to live productive and healthy lives.
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ICER's value assessments have been repeatedly shown to devalue and restrict access to health interventions that may benefit individuals with hearing losses and other disabilities more so than the 'average' healthy patient. This is in part because when conducting QALY-based cost-effectiveness analyses, ICER assumes the population that could benefit from the health intervention of interest is homogenous or, 'the same'. DHC and our allies believe this is a flawed and concerning approach to assessing value given that many underrepresented populations, including individuals with hearing losses, are more likely to be diagnosed with chronic conditions, have low health literacy, experience increased barriers to accessible care, and less likely to have quality health insurance due to social determinants of health compared to the 'average', hearing, healthy population ICER assumes when assessing value. For example, if health insurers seeking to determine whether to cover a particular treatment for diabetes referenced an ICER assessment, which found the intervention to be of low-value or not cost-effective among the general population ICER assumed would benefit from the treatment, individuals with hearing losses and other disabilities who are at increased risk for chronic diabetes would be restricted access. What ICER determines is not cost-effective or low-value among the 'average' population, may be cost-effective and of more value for patients with hearing losses. DHC and our allies believe there is no "one-size-fits-all" approach to assessing the value or 'appropriate price' of a health intervention across all patients. We urge ICER to better recognize the increasingly diverse patient population in the United States, their unique needs, and update its methods to:
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Better account for the unique quality-of-life (QoL) outcomes that reflect the lived experiences of individuals with hearing losses and other disabilities compared to the general patient/population ICER assumes when conducting value assessments;
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Leverage evidence-generation organizations, such as the Patient-Centered Outcomes Research Institute (PCORI), to fill in data gaps when conducting assessments on health interventions, both treatments and technologies, that may have a higher likelihood of benefiting individuals with hearing losses compared to the 'average' patient; and
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Formalize the inclusion of subgroup analyses to account for and reflect the heterogeneity of treatment effects across subpopulations, including individuals with hearing losses. In assessments in which data specific to individuals with hearing losses may be insufficient or unavailable, we encourage ICER to expand its "Contextual Benefits and Considerations" section to highlight the potential impact of the intervention of interest on individuals with hearing losses and other disabilities.