CZ in RealClearHealth: After Participating in CMS’s IRA Listening Sessions, I Remain Skeptical of IRA Implementation.

Over the last month, I have participated in the Centers for Medicare and Medicaid Services (CMS) “patient-focused listening sessions” ahead of the dangerous Inflation Reduction Act (IRA) price “negotiations.” As a patient who lives with an incurable, progressive disease that requires innovative medicine, I saw the IRA as a real threat to medical innovation and spoke about this concern at nine of the ten sessions CMS hosted. Someone had to sound the alarm and step up for Americans who require a pipeline of new medicines.

As one of only a handful of patients invited to appear at the listening sessions, there wasn’t time to be unclear. With only three minutes to speak at each, hosted the bureaucracy assigned to the IRA’s impossible mission to set prices for some of the world’s most successful medicines, it had a David vs. Goliath feel.

In the case of my disease, forces not in my control would take something that previously functioned very well and distort it into something else. It’s impossible to know ahead of time where the impact would be, but I would know there would be an impact.

The difference was that I could escape the most severe consequences because I had therapeutic tools to deploy.

To offset the negative impact of the IRA’s policy assault, there is no similar tool. There’s no pill, steroid, or IV biologic to undo this.

I was grateful for the chance to speak on behalf of all patients, regardless of illness. It’s unfortunate that policymakers are only “listening” now after the policy is being enforced. Hearing from patients after the fact about the importance of a pipeline of new treatments might have been a necessary PR move, but it’s not much more than a stunt. Like asking a patient if they have any allergies to antibiotics long after administering penicillin. Dangerously too little, too late.

I sat and watched as patients shared how vital each therapy was to them. Even those sympathetic to price controls confessed their need for “life-changing” “miracle” medicines. An appreciation expressed for their medicine by all participants.

It was excruciating knowing the risks being put on patient lives as grinding government regulations are already suppressing the innovation they require.

Their remarks made me even more confident in the message I was delivering: This price control effort would deliver “blunt-force trauma to a delicately balanced medical discovery ecosystem.” And changing the incentives risked the cures the world relies on. “Americans can’t afford for that pipeline of cures to end.”

Someone needed to tell the regulators directly the effects of suppressing innovation on real lives as they implement the IRA (which would be more accurately named, the “Illness Retention Act”).

My message was nearly identical in all hearings, despite being warned mid-week in emails from CMS that I should reconsider my statements. I’m sorry, but when the house is on fire, people need to be told. Repeat and repeat until the message is received. It is just too important, so I’ll say it again: Americans can’t afford for this pipeline of cures to end. I'll adjust my message once I know patients are safe.

John Czwartacki is the Founder and Chairman of Survivors for Solutions, a nonpartisan,  nonprofit patient advocacy organization that seeks to preserve and protect the medical innovations that give patients hope.