Patients have a responsibility to get engaged and fight ICER’s plan to cap treatments and stifle innovation.
That’s the takeaway message from Patients Rising’s co-founder and policy director Jonathan Wilcox’s recent interview with the Journal of Clinical Pathways. In the September issue, Wilcox explains how the Institute for Clinical and Economic Review, known simply as ICER, is undermining patients’ access to life-saving treatments with its value frameworks.
On value frameworks: “Value frameworks as a general theory are something that we have concerns about. They place what we see as a disproportionate focus on cost, which is a challenge, but not our only challenge. That gives patients an inaccurate picture of the totality of their health care challenges as well as the system’s challenges.”
On ICER’s value framework: “My fundamental and unmovable, unshakeable dispute with ICER’s Value Assessment Frameworks is that they seek to cap treatments and slash investments in medicines as a way of addressing health care economics, and that is just going to threaten patients. That’s really all there is to it.”
On clinical pathways: “I am against anything that, in any way, blocks the clinical judgments of the doctor-patient relationship. To me, that is unacceptable. Clinical pathways and value frameworks will be destructive to the doctor-patient relationship and the judgment of those individuals. I think that clinical judgments influenced by cost management are something very troubling. We need to stop having our health care decisions made by those who know the cost of everything, but the value of nothing.”
On a patient’s responsibility: “As an organization, we believe that patients also have a responsibility in all of these endeavors… I think patients have to make sure they are as knowledgeable as they can be, which will be helpful to both them and their doctor.”
Check out the entire interview in the September issue of the Journal of Clinical Pathways.
As part of our mission to serve patients, we’ve responded to ICER’s draft reports that attempt to determine a fixed value for life-saving treatments.
In June, our co-founder and executive director Terry Wilcox raised some important concerns with ICER’s Draft Scoping Document for Non-Small Cell Lung Cancer.
“Every patient advocate in the lung cancer community wants to help move towards more efficient, patient-focused care aimed at eliminating waste and fraud within each sector of the health care ecosystem,” Terry wrote in response to ICER’s Draft Scoping Document for Non-Small Cell Lung Cancer. “We hope that ICER will choose to genuinely and comprehensively reach out to the advocacy community for a robust exchange in search of ways to collaborate.”
Unfortunately, ICER has failed to welcome patients’ input. ICER’s publication of a lung cancer report riddled with factual inaccuracies demonstrates the risks of non-peer reviewed papers masquerading as real science. We don’t need to search far to see other examples of “hype before science” and how patients can be negatively impacted – just look at Theranos or and other companies that are short on data, lacking in peer-reviewed publications, and have now been proven to be pseudoscience. The most trusted organizations out there, ones that rely on actual expert clinician and patient input, aren’t afraid to take their methodologies and publications through peer review.
A recent piece for Healio.com that discussed ICER’s draft report on non-small lung cancer only scratched the surface on these issues. Organizations including ASCO and NCCN adhere to this scientific best practice, and understand why it is so important. ICER is playing a dangerous game, and one that makes many of us question whether they have the internal processes in place to ensure rigorous science and root out potential biases. It should not be too much for patients to ask that publications with the potential to impact public health be held to a rigorous scientific standard.
The factual inaccuracies in ICER’s draft report, as well as its lack of transparency in its methods and calculations, nearly guarantee that this paper would never make it through peer review at a reputable journal. The result is then misinterpretation of wrong results to call one of the most stunning scientific advances in cancer this decade as “having uncertain benefit.” Patients who are still alive because of anti-PD1 drugs would certainly disagree, as would the doctors who are successfully treating patients with these new advances.
Seth Ginsberg, the co-founder and president of the Global Healthy Living Foundation, echoes our belief that patients need to stand up and be counted.
“It’s time that our ‘patients’ voices are heard,” Ginsberg writes in a recent piece published at The Hill. “If medications are deemed medically necessary by our doctors, who have years of training, then insurers should be prohibited from removing efficacious medications from formularies based on nothing other than cost and insurer profit margins. If a medication can save or enhance a life, who are we to deny that patient the opportunity to live or live well? In this circumstance, we are talking about millions of patients with arthritis and we can expand that to tens of millions of patients with other diseases such as high cholesterol.”
“Insurers don’t innovate or manufacture medications, they merely serve as the broker,” he points out. “And as our broker – who is charging us an ever escalating amount in premiums, deductibles and co-pays – it’s time they acted in our best interest.”
ICER claims they are a trusted, non-biased non-profit organization, and yet right on their website you can find Action Guides for Payers and Policy Makers which can be found for Hepatitus C and High Cholesterol. Why does ICER consistently build barriers to access between patients and their medicines? Despite their lackluster efforts to bring consumer and patient advocacy representatives to their governing board in July — it’s not enough. Not nearly enough. The voting committee should be created for each disease state. The advocacy groups should be nominated. The patients should be selected to represent the treatments being reviewed and the questions being asked. ICER is too married to their regional CEPACs and not interested in gathering the right team to vote on the right methodology and ask the right questions for the right patients.
Their motivations are clear. We do not question them, we simply do not agree with them. No matter how they doctor it up, they are still goverend 50% by the insurance industry and two members from Blue Shield of California, an institution that uses their reports in denying patients access to treatments. Since their 2015 Policy Summit on Value-Based Pricing more than half of their pharmaceutical members have not renewed their membership. They are reviewing treatments made possible by the pharmaceutical and life sciences industry, when more than half of them leave the conversation, something is terribly wrong with your methodology. However, insurance and pharmacy benefit membership holds strong.
How is this an unbiased dialogue aimed at helping patients?