Late last year, I got a call from Steven Pearson, the president of ICER, the Institute for Clinical and Economic Review. He wanted to know if I would consent to being a member of the new Midwest CEPAC (Comparative Effectiveness Public Advisory Council):
The Midwest Comparative Effectiveness Public Advisory Council (Midwest CEPAC), a core program of the Institute for Clinical and Economic Review (ICER), is a nationally-recognized community forum. The Midwest CEPAC convenes three times each year at public meetings to review objective evidence reports and develop recommendations for how stakeholders can apply evidence to improve the quality and value of health care.
Midwest CEPAC directly engages clinicians, patients, and payers during public meetings to discuss implications of the evidence for clinical decision-making and coverage policies. Application of evidence takes shape through new medical policies, benefit designs, and patient and clinician tools to improve clinical care and patient outcomes.
My initial impulse was to decline. I have so much on my plate these days that I find there's little time to engage in new endeavors. But Austin is a fan of ICER (he serves on the New England CEPAC), and when I listened to Pearson, it because clear that this was something I would otherwise fight for. I've written many times about how we need to be able to talk about cost-effectiveness in the public sphere. This was my chance.
I know that ICER gets a lot of press, much of it negative. I also think that press is misguided.
We recently had our inaugural meeting. Its purpose was to discuss "Treatment Options for Relapsed of Refractory Multiple Myeloma: Effectiveness and Value". This isn't my usual area of clinical expertise, so I immersed myself in the expert report, as well as the relevant literature. Both are publicly available, and very well done.
The meeting, which was also public, was attended by far more people than I would have expected. The first few talks detailed the relevant research, as well as a very impressive cost-effectiveness model (all of which you can review here). Questions were permitted, and everyone was attentive and listening carefully. Then, we heard from members of the public who had pre-registered to deliver oral remarks. Most people were from advocacy organizations, and did not seem to like the fact that we were discussing value in this setting. This was followed by comments from various representatives from manufacturers (drug companies). They didn't seem inclined to ICER's mission either.
After lunch, we had a Q&A session, along with voting. This was when members of the council (I'm one) voted on the effectiveness and value of various combinations of therapies for refractory multiple myeloma.
I write often about how we pay too much for care. I thought, going into this, that I would be arguing that these therapies were too expensive to be considered better than "low" value.
However, unlike many things which have questionable effectiveness, these medications do work in trials. They extend life, or time until progression, a real number of months or years. Yes, they cost hundreds of thousands of dollars per QALY, but we spend far more on that for many things that don't work nearly as well.
At the end of the day, I voted to pretty much all of the therapies to have "intermediate value". They're not high value, cause they ain't cheap, but they're also not a waste. Most of the committee seemed to agree with me.
I was struck by how, when all of this was said and done, there didn't seem to be much to be fear. No one suggested that we refuse to pay for these therapies. No one suggested that they weren't "worth it". We argued, and everyone seemed to agree, that we have got to get a grip on how much these drugs cost, or someone, someday, wouldn't be able to afford them, but no one talked about rationing them.
After a policy roundtable, with representation from many stakeholders, we ended with comments from the members of the council. Here were my thoughts:
I think everyone here can sense the trepidation amongst many here in the room about having conversations like this, and a number of people have brought up the four letter word "rationing". But make no mistake - rationing occurs in our healthcare system every day, and many, many patients are denied the care they need - and you could argue, they deserve - every day. We can either continue to have those conversations in closed rooms where no one really has any input and no one really knows why decisions are made, or we can have them in the light. We can talk about them in public and at least try to debate them in the open.
You can watch the meeting, start to finish, here. My comments are at the end, around 5:43:00.