Thread by @PeterKolchinsky

Do patient groups perceive drug price controls (HR3) will end progress in treatment of many diseases? Cancer, Alzheimer’s, Parkinson’s... done. HR3 not benign. Price controls always kill investment in risky R&D. No “alternative” economics on that point. timmermanreport.com/2021/03/a-glim…

Some patient advocacy groups I’ve spoken with say “we don’t want to be seen defending drug industry”. And yet, as w/COVID, that’s who develops the treatments- that’s where hope comes from. What’s the point of having standing and pathos if you won’t use it to defend what’s right?

Some say “no, NIH invents drugs.”. They misunderstand. NIH builds foundation but not the product. It makes prototypes at best. But it’s takes the $160B of R&D each year to bring ~50 drugs/year to market... to patients. nopatientleftbehind.docsend.com/view/mxht62ee3…

We are or will all be patients. So patient advocates represent all of us even if we don’t yet have cancer or Alzheimer’s. If the young and healthy knew what was coming for them & understood the economics of innovation, they would not fall for the anti-drug rhetoric.

Rising costs of long term care for Alzheimer’s are like climate change... growing in intensity. Who profits? The long term care facilities. But if we incentivize new medicines which eventually go generic, we can reduce misery & costs. Nursing homes don’t go generic.

So why are so many patient groups not standing up to lawmakers who pretend drugs are THE problem (when drug spending is one of the slowest growing segments of healthcare) & the main source of progress?

And to be clear, all is not kosher in drug industry. Some old drugs are expensive for too long. But proper solution is to ensure all drugs go generic, not cut rewards for new ones.

For example, rational reform of drug pricing would be to tax old drugs w/o generic competitors, but don’t price control new ones. That might not win as many votes in near term, but it would save lives, preserve hope, and actually benefit people our leaders are sworn to serve.

But HR3 may as well be translated into “we would rather just pay more to live with Alzheimer’s & cancer than pay less to invent treatments for them”. Patients should be outraged by that- are they? As for affordability of current medicines, that’s a function of insurance design.

We are all outraged by rising out of pocket costs. Patient advocates would hopefully see this is function of insurance. Net drug prices growing below inflation; Net prices of insulins have fallen in last decade. Yet plans are jacking up OOP costs. See more here on absurdity.

https://twitter.com/PeterKolchinsky/status/1375972942933340162

I’m sure there are patient advocates out there fighting hard against the misguided policies of HR3 (as we head into the reconciliation process Dems relying on) b/c they understand how toxic price controls would be to innovation. Who are they? @NPLB_org is looking for allies.