News & Blog

Discrimination has no place in American prescription drug coverage

If someone is older, sicker or more disabled, should less value be placed on treating them? Most Americans would be repulsed by the very question. However, one organization is using questionable methodology to determine whether medical treatments are worth it or not for the people most desperately in need.

The Institute for Clinical and Economic Review issues reports about what medications are and are not worthy of being covered by insurance. Unfortunately, ICER relies on arbitrary and unscientific methodology to make its recommendations.

CLICK HERE to read the full op-ed by Sue Peschin in The Tennessean.

ICER Faces New Foe As Patient, Disability Alliance Takes Aims At Reports On Mayzent, Spravato

An article in The Pink Sheet highlighted the Partnership to Improve Patient Care (PIPC)’s involvement with Value Our Health — a new initiative supported by organizations representations patients and people with disabilities. The article highlights Value Our Health’s opposition to the Institute for Clinical and Economic Review’s (ICER) use of the quality-adjusted-life-years (QALY) metric, nothing that the patients groups have long criticized the method as a one-size-fits-all approach to addressing the needs of patients. “It is disappointing that ICER continues to reference the QALY as the ‘gold standard’ despite that it distorts and misrepresents how patients value their own lives, and it can lead to insurers and the government to deny care to people who would benefit from it,” said PIPC executive director Sara van Geertruyden. “There are other ways of conducting value assessment, it’s just they just really don’t have the investment that ICER has.”
CLICK HERE to read the full post.

Value Our Health: Stop Discriminatory Value Assessments

Millions of Americans are living with chronic illnesses and disabilities. In generations past, we did not live well or long with these conditions.

Today, scientific advancement has ushered in more innovative therapies and technologies than ever before. Societal evolution has led to policies that have made navigating the world as someone living with one or more of these conditions progressively better.

Cancer patients, for example, are living longer than ever before. They have more options for treatment that can not only extend their survival but can also improve their quality of life.

Through organizations such as the Cancer Support Community, we attend to the social, emotional and logistical burdens many cancer patients and survivors experience. We know that comprehensive, high-quality cancer care must encompass every facet of a patient’s life.

However, this progress comes at a cost. Innovation is expensive, and with high-cost therapies come difficult decisions about scarce health resources.

CLICK HERE to read the full op-ed by Elizabeth Franklin, Cancer Support Community.

Boston drug price watchdog criticized for ‘one-size-fits-all’ approach

A Boston-based watchdog group uses a “one-size-fits-all” approach to determine fair prices for prescription drugs, a mind-set ill-suited for a growing wave of expensive medicines that treat rare diseases, according to a new report by a libertarian-leaning think tank.

CLICK HERE to read the full post.

Patient Advocates Say ICER Uses Discriminatory Cost Metrics

A coalition of patient advocates, provider groups and drug makers is criticizing the Institute for Clinical and Economic Review for using a metric they say discriminates against people with disabilities and chronic illness. ICER has responded to the criticism by saying it will include alternative, less controversial metrics in its cost-effectiveness reports. The metric at issue is the Quality-Adjusted Life-Year, which is a commonly used standard internationally to determine the cost-effectiveness of medical treatments, including drugs.

CLICK HERE to read the full post.

This Nonprofit Might Make It Harder for Those With Depression to Get the New ‘Miracle’ Drug

As drug prices continue to rise, patients with disabilities, chronic conditions or diseases and mental illnesses suffer the most, as drugs treating their conditions already tend to be much more expensive and much less likely to be covered by insurance companies. Despite a recent spate of hearings on Capitol Hill to explore ways to lower drug prices, Big Pharma blitzed Washington with $52 million in lobbying just in the first quarter of 2019.

CLICK HERE to read the full post.

ICER says pricing for Novartis MS drug ‘far out of line,’ but more groups push back

A controversial cost-effectiveness watchdog has declared that Novartis (NVS) priced its recently approved multiple sclerosis drug “far out of line,” the latest slap at the pharmaceutical industry over pricing for such treatments. But critics are using the watchdog’s analysis to push back on the approach it takes to assess the value of new medicines.

CLICK HERE to read the full post.

Leading Patient and Disability Advocates Push Back Against ICER’s Flawed Reports on MS and Depression


June 21, 2019

Washington, D.C. (June 21, 2019) – The Institute for Clinical and Economic Review (ICER) released two reports on Secondary Progressive Multiple Sclerosis (MS), an unpredictable and frequently disabling disease of the central nervous system, and Treatment Resistant Depression (TRD), a devastating condition that inflicts significant health and financial burden on our nation.

ICER’s MS report is highly flawed, as it moves forward with a review that no longer aligns with the product’s the Food and Drug Administration (FDA) approval and is a clear example of ICER prioritizing speed over evidence-based, patient-centered analysis, is no longer relevant and should be disregarded. Further, ICER’s TRD report failed to capture the immense societal and economic burdens associated with depression and falls short in several important ways.

Sara van Geertruyden, Executive Director for Partnership to Improve Patient Care, said “it is disappointing that ICER continues to reference the QALY as the ‘gold standard’ despite that it distorts and misrepresents how patients value their own lives, and it can lead to insurers and the government to deny care to people who would benefit from it.”

“Value determinations based on QALYs and similar average metrics often fail to acknowledge side effects and differences in effectiveness for populations that are far from average. Different people respond differently to the same drugs,” said Ari Ne’eman, Disability Advocate, Partnership to Improve Patient Care.

Click on the links to learn more about the harmful flaws in ICER’s MS and TRD reports.


Susan Peschin on State Use of QALYs in The Hill

When the National Governors Association convenes in Washington this weekend, prescription drug costs will no doubt be on the short list for discussion.

According to the Centers for Medicare & Medicaid Services, Office of the Actuary, Medicaid spending on prescription drugs is projected to increase by 36.5 percent (from 35.8 billion to 56.4 billion) between 2019 and 2027. Some of this escalation in costs can be attributed to our aging population and accompanying disease-related disabilities, but drug prices need to be addressed.

CLICK HERE to read the full post.



Chairman’s Corner: New York’s Embrace of Discriminatory Value Assessments is a Call to Action!

​The final New York budget is complete.  And now we know for sure that states feel empowered by this administration to discriminate in their Medicaid programs.  I had hoped that we were past these tactics to discriminate when, in 1992, HHS denied a state Medicaid waiver using quality-adjusted-life-years (QALYs) to determine its coverage because of its implications for violating the Americans with Disabilities Act (ADA) and when, in 2010, Congress banned use of QALYs in Medicare.  But it looks like we are fighting this kind of discrimination state-by-state now.

CLICK HERE to read the full post.