FAQ

The Quality-Adjusted Life Year (QALY) is a measure developed by health economists to measure and compare the benefits of healthcare interventions for cost effectiveness analyses relied on to allocate health care. The theoretical underpinning of the QALY is that quality of life can be measured and distilled down to a single number. There are serious ethical concerns with how QALYs are developed and ultimately used. For example, it is well known that QALYs fall short in measuring health preferences for patients with chronic diseases and disabilities. QALYs place greater value on years lived in full health, or on interventions that prevent loss of perfect health while discounting gains in health for individuals with chronic illnesses.

Your voice is needed to inform decision makers about outcomes that matter to patients and people with disabilities, as well as the value of your health and your loved ones. Researchers are actively assessing the value of treatments using quality-adjusted-life-years (QALYs) and similar discriminatory metrics. Payers, in turn, use these assessments to decide what treatments are covered. Stay informed about upcoming value assessments and access resources to help you be engaged.

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International Reference Pricing is a policy that has been proposed by both the Trump Administration and the House of Representatives in the form of H.R. 3. It would allow the United States government to determine what other foreign governments are paying for pharmaceuticals and then use that information to influence or set the price of these products within the United States.

Patients and people with disabilities are concerned about this policy, as most of the countries that would be reference rely on QALY-based value assessments to determine price and coverage of treatments. The implication of this is that many drugs available in the United States are not available or drastically delayed in foreign countries. We are concerned that importing these pricing systems would lead to the same access challenges within the United States.

A Value Assessment is a tool used to determine the “value” of a healthcare intervention. Traditional value assessments tend to be QALY-based cost-effectiveness analyses (CEA). These assessments are designed to determine whether the benefits of a treatment are worth the cost. Frequently these analyses omit outcomes that matter to patients, failing to capture “value” to the patient and focusing on “value” to the payer. There are new models being developed that are actively working to be more patient-centric. Organizations doing this work include PAVE and the Innovation and Value Initiative.

The Institute for Clinical and Economic Review (ICER) is a private research organization that conducts cost-effectiveness assessments of medicines and health care services. Health insurers and policy-makers use these assessments to guide decisions that impact patient access, which is concerning to the patient and disability community, as their research fails them in multiple ways.

ICER conducts cost effectiveness studies for insurers using the cost-per-QALY methodology. Quality-adjusted life years, or QALYs, is a metric commonly used to determine the value of a health care treatment. To calculate a QALY, you must assign a value to a person’s life. Because the value assigned to seniors, the chronically ill, or people with disabilities is lower than that of a young, healthy person, QALYs could lead policymakers and payers to conclude the treatments for seniors, patients with chronic conditions or people with disabilities are not worth covering.

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As policymakers and health insurers are looking to bring down the cost of healthcare, they are frequently turning to value assessments as a method to determine which treatments are worth paying for and which are not. The problem with this is that traditional value assessments are ill-equipped to determine which treatments are providing value to individual patients, as they were designed as an instrument to make broad, population wide decisions. Relying on value assessments to make payment and coverage determinations can lead to patients experiencing delays and barriers to access for needed treatments.