SFS Statement on CMS's New Drug Price Negotiation Talks

June 6, 2023 – The nonpartisan patient advocacy group, Survivors for Solutions, started by John “CZ” Czwartacki, a patient who has managed his MS for 30 years, provided a patient perspective on CMS’s drug price negotiation program talks this fall:

“After patients were boxed out of initial input on the IRA’s drug price negotiation program, now policymakers want an ‘on-the-ground' perspective for a program that is already in full swing. Let’s take this comment seeking for face value: it’s a box-checking exercise so the Biden administration can say they consulted patients before they implemented one of the most far-reaching and admonished programs in healthcare history. Washington bureaucrats have chosen an unproven strategy to make drugs affordable, knowing the only way to achieve this is by limiting the number of treatments available and putting the U.S. medical innovation ecosystem on lockdown.

“Even more ironic is that the only revealed assessment tool they will use to determine whether they’ll cover a drug is completely subjective and should be considered a conflict of interest to patients. Seeking input on how a drug benefits the patient is a conversation that should remain between a patient and their doctor – hard stop. And one patient’s experience with treatment should not impact whether that treatment is available to the next.

“I have yet to see the agency post my comment, along with other stakeholders, on the IRA’s initial guidance. If they are seriously seeking patients’ perspectives, they need to do so transparently so we can be the ones to weigh the costs of this egregious drug price program.”