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His adversaries call him a shill for health insurers, a bloodless bean counter who would rather let some sick people die than see them get expensive life-saving medicines.

But Steven Pearson, founder of an obscure nonprofit watchdog group in Boston, is wielding growing influence on what some of the world’s biggest drug makers charge for their products.

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  • No one who works with or advocates for patients disagrees that drug prices in this country are too high. At CancerCare, an organization that provides free professional support services and information to people affected by cancer, we disagree with the article’s premise that the answer is either out of control prices or ICER’s fundamentally flawed assessment process that discriminates against patients, people with disabilities, and older people.

    QALYs, the measure on which ICER bases it assessments, are prohibited for use in Medicare because they discriminate. In 1992, the then Secretary of HHS under President George Bush opined that QALYs violate the American With Disabilities Act by ascribing a lower value to someone with a chronic condition or disability.

    QALYs have been around a while and rely on assigning a single numeric value based on averages. But as anyone who works in healthcare can tell you, no patient is average. And while medicine continues to move in the direction of patient-centered care, which the National Academy of Medicine has declared to be the gold standard of cancer treatment delivery, ICER continues to rely on a one-size-fits all approach that does not account for differences among patients. Not every drug or treatment works for every patient, but what ICER may judge to be a “low value” treatment may be the only one that can save a particular patient’s life. My guess is that to that patient and their family, such treatment is seen as very high value indeed.

    Those of us advocating for patients simply want the patient’s voice included and there are models for doing so. We can look to the National Health Council’s Patient Centered Value Model Rubric or employ Multi-Criteria Decision Analysis (MCDA). We can support the work of the Center for Patient-Driven Value Assessment (PAVE) and the Innovation and Value Initiative (IVI), both of which are using patient-centered methodologies to determine value.

    We don’t need to fill the gap between excessive prices and value determination with methodologies that go against the American value of treating all people as individuals with the same rights and worth.

  • I thought that US agencies, including Medicaid, were not allowed to undertake cost effectiveness assessments or to use them in negotiating prices. Is that correct? If so, isn’t it surprising that Medicaid would be providing funding to ICER?

    • Typically uninformed reporting on ICER. QALY is only used in UK and there’s no science behind it. No mention that ICER receives Arnold ventures $ as does peter bach who is quoted in the piece. No mention of how ICER limits affect lives of patients.

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