Peter Kolchinsky, Managing Partner at RA Capital Management, breaks down a new white paper with Entity rRisk that aims to get the math correct when measuring the value of new medicines; a new report says the HHS Office for Civil Rights wants an update...
Peter Kolchinsky, Managing Partner at RA Capital Management, breaks down a new white paper with Entity rRisk that aims to get the math correct when measuring the value of new medicines; a new report says the HHS Office for Civil Rights wants an update to a 50-year-old law to prevent disability-based discrimination; and Patients Rising Now is supporting The Protecting Health Care for All Patients Act.
Congressional Budget Office Webpage: H.R. 485, Protecting Health Care for All Patients Act of 2023
Hannah Wolf 0:03
Welcome to Healthcare Policy pop. I'm Hannah Wolf. It's Tuesday, September 19 2023.
Speaker 1 0:11
Today's pop topics, discrimination against those with chronic disease and how we assess the value of treatments. Peter Kolchinsky runs a Boston based investment firm RA Capital Management. They've recently released a white paper on how we can differently measure the value of innovation to patients, which then translates to the price of a drug. Kolchinsky says the theory behind value assessment is quite simple.
Peter Kolchinsky 0:40
You look at that. And you think, Well, if we had a medicine that could prevent all that, surely that would be valuable, it would save society a ton of money over time. Right. And so the market generally rewards medicines like that.
Hannah Wolf 0:54
But as we've mentioned, on this podcast, the practice is much different than the theory because of flawed and often discriminatory metrics. Like the quality,
Peter Kolchinsky 1:06
They only look at the value of treating that one patient like to the patient, they assign a certain value to the benefit that the patient gets, they ignored the benefit to caregivers, they ignore that when you know, a child with cystic fibrosis stays in good health. The parents, you know, don't get ripped out of work, you know, as often as taken to the hospital, like they're more productive, the whole family's happier. You know, like you're less worried about your child dying. I mean, there's just benefit all around.
Speaker 1 1:35
These metrics which discriminate against patients with disabilities heavily affect innovation, because the true value to patients isn't properly measured.
Peter Kolchinsky 1:46
They are woefully inadequate. They're just very simple equations that ignore you know, that drugs go generic, for example, and ignore that we're willing to pay more for things that address really serious things.
Hannah Wolf 2:01
Kolchinsky's report, which was done in partnership with Entity rRisk looks to address those inadequacies.
Peter Kolchinsky 2:08
Now this math that we did with Entity rRisk, it actually addresses patient's concerns about the quality by using a mathematical construct called grace that was really pioneered by Darius at USC, Schaeffer center. You know, it actually accounts for disease severity and life extension in sort of separate ways that prevents that kind of undervaluation of the lives of people with disabilities.
Hannah Wolf 2:38
But the real work is changing the conversation around innovation as a whole.
Peter Kolchinsky 2:44
I can't promise you that Congress in the public will believe you, you know, we have to fight this fight out there for the hearts and minds of the public and it realistically will not be one with math. Like this is a small step towards making your case. I think that we have to all band together and pool our creativity and some of our resources to try to over let's say a 10 year period of time, win back the hearts and minds of America to the value of innovation.
Hannah Wolf 3:14
You can hear more from Peters full conversation on an upcoming episode of the patients rising podcast live on Monday, September 25.
Hannah Wolf 3:28
Also today, a new report says the Health and Human Services Office for Civil Rights wants an update to a 50 year old law to prevent disability based discrimination and federally funded programs. This would mean an update to Section 504 of the Rehabilitation Act. Patients rising now would like to see the office make sure that patients with chronic disease are also protected from systemic discrimination. More to come on that in the coming days. Finally today also on the discrimination front, patients rising now is supporting hr 485. The protecting care for all patients Act which would ban the quality from being used by federal payers. That's all for today. We're back on Tuesday for another health care policy pop a resource of patients rising now. I'm Hannah Wolf, have a great day.