QALY Update

Janson Silvers  0:03  
Welcome to health care policy. I'm Janson Silvers, it's Thursday, September 28 2023.

Janson Silvers  0:10  
Today's hot topics ICER releases a quote unquote update to its value assessment framework. Bill Smith, Director of the Life Sciences Initiative at the Pioneer Institute says this update, if you can call it that, reminds him of Charlie Brown playing football with Lucy.

Bill Smith  0:27  
Charlie Brown is the drug manufacturers, patient advocates and a lot of people who line up and think we're finally going to convince Aisha to get this right. And the football gets taken out away from them every time. And ICER, reverts to form which is basically their prime constituency are payers. And they're looking for instances where payers might be overpaying for medicine. That's their constituency. And that's what they do. And I think we shouldn't be naive about it.

Janson Silvers  0:58  
After some debate earlier this year, ICER ultimately decided to not further devalue a life beyond its already low in arbitrary threshold,

Bill Smith  1:07  
There are some baby steps that I would say are good things. For example, in some of the drafts, they wanted to lower the value of a human life from 100 to $150,000, to 50 to $100,000. And that would be a considerable reduction, it would make a lot of drugs rated, not cost effective, if they had done that, but they didn't end up doing that they kept the threshold at 100 to $150,000.

Janson Silvers  1:33  
But once again, those with rare diseases have been left out in the cold.

Bill Smith  1:38  
The thing I was most disappointed about, that they didn't do is they didn't change the threshold for rare disease drugs. They still have this system in which they consider rare disease drug, any drug that treats less than 10,000 patients, which isn't a government standard, you know, the orphan drugs by the FDA are considered 200,000 patients or below. So there isn't really a category of ultra rare disease drugs, and they have too low a threshold to consider those drugs.

Janson Silvers  2:09  
In line with patients rising, Bill Smith says this update isn't much of an update at all. And the continued use of the QALY hurts patients.

Bill Smith  2:18  
I mean, this is a status quo update, and they are very minor changes made. And they only gave patient advocates and manufacturers 25 days to submit their comments. They announced this update on June 5, and it was finalized it was closed on June 30. That's not a very long period of time to provide input. So you know, I would say that it's kind of a status quo. FO would be another word to use that it's not really an update. It's just the status quo.

Janson Silvers  2:49  
Learn more about Bill Smith and the Pioneer Institute by using the link in the show notes.

Janson Silvers  3:00  
Earlier this year, Congresswoman Cathy McMorris Rogers joined the patient rising podcast to discuss a bill aimed at banning the QALY

Congresswoman Cathy McMorris Rogers  3:08  
This legislation would ban quality adjusted life years or QALY and QALYs are used to discriminate against people with disabilities and patients with debilitating or life threatening health conditions. That would be a positive impact on quality of life and access to treatment for individuals in the disabilities community to get the qualities banned.

Janson Silvers  3:31  
McMorris Rogers sums up the whole issue.

Congresswoman Cathy McMorris Rogers  3:35  
It's incredibly concerning to think that the government would have the power to choose who gets to access treatment and care and who can live and actually get care or be allowed to die.

Janson Silvers  3:49  
Finally, today, patient rising now along with several other groups released statements denouncing the ICER update. In our statement, McKay Jimeson, Executive Director of patients rising now said quote, most of today's tweaks are just a PR effort, a thinly veiled strategy to continue its discriminatory tactics, and ICER has not solved any of its fundamental flaws. The National pharmaceutical Council says the lack of several key provisions are quote a disservice to patients and those who practice the scientific application of value. And the biotechnology industry organization said quote ICERs update ignores calls for improvements. We will link to all three statements 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 Janssen Silver's, have a great day.