Thread by @PeterKolchinsky

My friend @G17Esiason, a patient advocate w/ #cysticfibrosis, wrote a scathing, insightful, op-ed taking Australia to task for doing demonstrably bad math to gaslight patients into thinking they aren’t worth treatment w/Trikafta. Example for all patients! realclearhealth.com/articles/2022/…

You might think this is just Australia, but as Gunnar points out, the math Australia does to condemn patients to suffer their fate untreated is the same math that other countries have used. This math is here in the US. Some are trying to get states to adopt it.

If you are a patient with cancer, an orphan disease, eczema, arthritis… losing your sight… don’t sit by thinking this doesn’t apply to you. If you ever hear about calls for “cost-effectiveness” math being used to determine what to pay for, read Gunnar’s op-ed. @IAmBiotech

Gunnar explains that math a government or other payer does to declare what’s worth cover & what isn’t is extreme subjective. If they want to make a drug look like it’s not worth it, they can just ignore that it, for example, will someday go generic. @icer_review @VertexPharma

Math manipulation that Australia did to claim Trikafta isn’t worth it’s price so they could deny coverage would be akin to someone telling you not to buy a home b/c the mortgage premium is higher than what you could pay in rent, IGNORING that mortgage is finite but rent isn’t.

That made Gunnar pretty angry, and it should make you really angry. Do you think you aren’t a patient? Just wait… we are all patients, eventually, or we love someone who will need treatment that such bad math will deny them. @breastcancer @MichaelJFoxOrg @CF_Foundation

There is better math out there. Math that does take into account that a drug goes generic, that it not only liberates a patient from symptoms but also unburdens their family, so-called caregiver spillover. @PeterNeumann11 @SchaefferCenter @NoamKirson

So as lawmakers consider whether to rely on cost-effectiveness math to decide what to pay for, make sure to urge them to at least insist that the math take into account all that matters, not willfully leave things out to undervalue novel medicines. Thanks @G17Esiason. @NPLB_org

Patients, which is to say ALL OF US, must stand up for ourselves. And innovators/investor can’t just keep their noses in the fume hoods believing it’s enough to invent a medicine. We must work together to make sure cost-effectiveness math remains a fair judge of our values.