Blog Post: How CMS is Condemning Patients, Without Their Input

Nearly a year ago, the Inflation Reduction Act (IRA) was passed into law and included disastrous drug price “negotiations” that are now being implemented by the Centers for Medicare & Medicaid Services (CMS). Expected to hamstring manufacturers’ ability to invest in the pursuit of finding new lifesaving drugs and treatments, these deceptive price controls are a far cry from the patient-centered solutions the Administration claims to prioritize. Even more alarming is their lack of regard for patients’ input on this program. CMS – the government agency supposedly responsible for providing American’s high-quality healthcare – is moving forward with implementing its drug price negotiation program, knowing good and well what its anticipated outcome on our medical innovation ecosystem will be. Back in March, the agency opened up the program for public input and, to no surprise, never publicly released stakeholders’ official comments as the government often does during these sorts of rulemaking periods (I suspect my official comment is in some form of a black box somewhere).

We’re now only just scratching the surface. CMS in June released “revised” guidelines for this program, in which they grouped all stakeholder comments into clusters, addressing their concerns broadly and with no acknowledgment of those, like me, who expressed concerns about price control’s impact on innovation. To really tied a bow on it all, they announced there would be listening sessions this fall so that patients could share thoughts on the program…but shared no details on when the sessions would be, how they would be conducted, who would be involved, and so on.

If CMS were actually interested in listening to patients, they would announce specific dates and accurate information on these listening sessions. There would also be clear guidance on how patients would be involved. Patients and advocacy groups should have time to prepare for these feedback sessions so that they can appropriately share their input. Not to mention, these sessions should ultimately be a two-way dialogue, not just another verbal comment session. Our access to current and future treatments is now in limbo, and I’d personally like to look those in charge of implementing this program in the face and ask them how they plan to mitigate the impacts of price controls on our innovation ecosystem and patients’ health. Shouldn’t a tax-payer-funded government program ultimately be responsible for answering to us who foot the bill?

As the founder of an organization that’s mission is to protect hope, I’m going to remain optimistic that CMS will provide us with details about these listening sessions soon. But as a political vet, I know better than to hope a government agency will be transparent about a program that is expected to hurt the very patients it’s supposed to help.

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LTE: We Need Drug Choices, published by The New York Times

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SFS Statement on CMS's New Drug Price Negotiation Talks