There is a war going on right now pitting thousands of ailing patients and their doctors against people in board rooms in an effort to win the right to access lifesaving medications and treatments. Patients are literally dying while their newest adversary — a purportedly independent nonprofit organization responsible for making decisions that impact the health care of tens of millions of Americans — has the upper hand.
The Institute of Clinical and Economic Review, an insurance-backed nonprofit, issues reports developed primarily by economists that suggest price caps on groundbreaking medications. We believe ICER’s flawed methodology for evaluating drug value is a short-sighted approach that allows insurers to justify implementing drug rationing schemes so they can avoid paying for costly but potentially lifesaving medications. Insurance companies base their medication coverage on these findings.
Several days ago, CNBC.com ran a story about 25 nonprofits, including Global Healthy Living Foundation, alerting members of the U.S. Senate Finance Committee about our concerns with ICER’s restrictive methodology.
[See: How to Pick a Health Insurance Plan.]
After the story was published, I received a call from a high-level executive at ICER disputing my claims that ICER is biased and that the group’s evaluation process doesn’t include input from all relevant health care sectors, including patients. She said ICER did include the patient perspective in the recent report on PCSK9 inhibitors (the game-changing new drugs for people at risk for heart attacks who have extremely high cholesterol). When I pushed her on the number of patients involved in its determinations, I awaited a big number — thousands, hundreds, dozens. But the answer was “one.”
News flash: ICER is the nonprofit whose research is being used by top insurance companies like Blue Shield of California and pharmacy benefits managers like Express Scripts because it tells them what they want to hear. People who have had heart attacks and have dangerously high cholesterol will not receive the drugs they need because one patient was tested, and then several economists said, “No.”
Additionally, the ICER executive informed me that the nonprofit’s board — of which eight of the nine directors listed on its 2014 tax filing previously worked in the insurance industry — will now be adding three new spots to include input from “all major sectors,” including one spot for the patient perspective. Here again, the consumer gets one spot.
Clearly, including a wider swath of patients will put a human face on health care needs as ICER begins to review drugs in other classes, including cancer treatments and autoimmune drugs. If the “suits” in the room see the real human impact of their decisions — and base their evaluation on more than spreadsheets, and incorporate actual patient perspectives on what these medicines do to help them — they may find it impossible to deny millions of patients the actual lifesaving medications they need.
[See: How to Help Aging Parents Manage Medications.]
It’s time to level the playing field and ensure a fair fight.
I have a fair proposal for ICER that may actually have a positive impact on all patients: Overhaul your board completely and provide equal representation from the insurance, pharma, patient and doctor perspective, with each understanding the impact of current medical practices. Create an equal and transparent vetting practice for each board member. Remove all those who don’t understand and have not studied the actual human impact of health care, but whose only expertise is in making or saving insurance companies money.
If ICER is to sustain any credibility with the public or lawmakers, it must implement a transparency policy revealing all funding, including a process to determine potential conflicts. It’s time that this nonprofit that received 77 percent of its disclosed 2013 funding from the insurance sector ask board members to recuse themselves when needed. In addition, individual funders need to be detailed, too. Patients should know that former Enron executive and hedge-fund trader John Arnold is backing ICER with at least $5.2 million specifically to influence drug and other health care pricing. We don’t know what his political or financial motives are.
These rules shouldn’t just apply to your board of directors, but to all of your boards, including your captive organization, the California Technology Assessment Forum (CTAF) that currently makes determinations based on your reports.
If ICER were interested in meeting the needs of all stakeholders involved in its reviews, it would require its reports on classes of medications to have either the endorsement or approval of a minimum of one patient organization and one physician organization from within that disease state.
[See: 8 Questions to Ask Your Pharmacist.]
If ICER is going to start jockeying for position as a major player in the health care world, we have a right to hold it to a higher standard of transparency with more patient- and provider-centered methodologies.
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Patients Deserve More Say About the Coverage of Lifesaving Medications originally appeared on usnews.com
