Patient Groups Target ICER 🎯

Sonali Doshi  0:02  
Welcome to Healthcare Policy Pop. I'm Sonali Doshi. It's Thursday, November 30 2023. Today's pop topics, multiple Patient Advocate leaders come together to push for change within ICER, an unregulated NGO that determines coverage and access to medical treatments. Earlier this week, three names and patient advocacy together hosted a patient advocate session. Patients Rising CEO Terry Wilcox and Rick Chapman, the Chief Science Officer at the innovation and value initiative, and Darius Lakdawalla, the Chief Scientific Officer at Entity Risk. Wilcox says a forum like this is important, especially for the groups she represents.

Terry Wilcox  0:46  
ICER thresholds are not appropriate for rare disease drugs. They're impractical for small patient populations. They don't capture the value for rare disease patients in many instances, which is why it's so so so important that rare disease and ultra rare disease patient communities engage. And at least let ICER know what your patient population issues are. 

Sonali Doshi  1:08  
Chapman says his organization is doing what they can to address some of these issues.

Rick Chapman  1:14  
In a nutshell, what we're trying to do is raise the bar on how we do value assessment try to tackle some of the methodological and procedural issues that come up with value assessment, and make sure that we're making those assessments as patient centered as possible, as transparent as possible, and that we're paying attention to equity concerns. When we look at assessments.

Sonali Doshi  1:38  
Chapman says his group is working on a project right now because of what happens when discriminatory value assessments are used for patients with rare diseases.

Rick Chapman  1:46  
Small number of patients the lack of natural history, data, lack of outcomes, data, and lack of comparators or trials that include comparators. And so lots of issues around the evidence in the data and causes a lot of problems when you're trying to do value assessments for rare diseases.

Sonali Doshi  2:09  
Lakdawalla is behind the GRACE model, an alternative to ICERs value model, because ICER isn't working for everyone.

Darius Lakdawalla  2:17  
The economics around computing value have really failed to account for the preferences of real human patients. And the evidence for that has been accumulating over many years. Even health technology assessment agencies and payers reveal through their own behavior that something is wrong. And the reason we know this is that they routinely make exceptions to the implications of traditional economic analysis when it comes to reimbursing therapy for very severe illness.

Sonali Doshi  2:51  
Lakdawalla says why it's important for patients to continue to knock on ICERs door. So in the future, the value conversation is reframed.

Darius Lakdawalla  2:59  
My hope is that there'll be improvements in the way we think about value, so that it better reflects the ethics preferences and beliefs real human patients, which sometimes have departed from the beliefs of economists.

Sonali Doshi  3:11  
A link to a past pop episode on the GRACE model is in the show notes.

In case you missed it, in addition to hosting the session on ICER reviews, the patient access and affordability project also recently released a report on discriminatory formulary practices. The report outlines how PBMs continue to affect formulary decisions that negatively affect patients time and time again. They do this by using tactics like adverse tiering, and lasering. To view the report and learn how this affects patients, you can use the link in the show notes. That's all for today. We're back on Tuesday for another Health Care Policy Pop, a resource of Patients Rising Now. I'm Sonali Doshi, have a great day.