A New Day at CMS

By John “CZ” Czwartacki, Founder & Chairman

For decades, it’s been the sad reality that people’s healthcare needs take a backseat to political “wants.”

Patient experience and the real-world needs of those who are fighting illness have seemingly been the last thing on Washington's mind, and instead, patients have been used as human shields to sell partisan pet projects.

“Experts” in healthcare policy have also tried to tell patients how we should feel about our illness and that they know “just the way” to fix them.

The list was endless: we need to have more people insured, we need more specialists, we need more efficient use of doctors, and we need the government to regulate it all.

As American health outcomes continue to decline, politicians have doubled down their “wants”: expanding insurance without measuring outcomes and drowning us in paperwork.

The result being only more taxpayer spending and less patient control. 

It’s a frustrating loop that has done nothing to address actual problems. Moreover, it’s been accompanied by little to no effort to ask real people what problems need solving.

Instead, policymakers have focused on soliciting feedback from insurance companies and hospital conglomerates. This, mixed in with the lobbyists who say they advocate for patients but are mostly K Street fundraising juggernauts, has made politicians the “winners” of recent healthcare policy, kicking patients to the back of the line.

The ironically-named Inflation Reduction Act (much like “Obamacare” before it) is a perfect example of one of those Washington “solutions” that seemed to benefit everyone except the patients it claimed to protect. By imposing price fixing on drugs, the law has stifled key innovation while rewarding subsidies to green energy projects.

In 2023, the agency responsible for enforcing this law, the Centers for Medicare and Medicaid (CMS), invited me to participate in the feedback “listening sessions” with patients who are grappling with its impact, specifically for each of the first ten drugs CMS targeted for price “negotiations.”

Unsurprisingly, they were nothing more than “too little-too late” PR stunts. Patients were given 90 seconds to share their experiences with the medication and give their thoughts on what the consequences of the law would do to them.

To say my fellow patients and I may as well have been talking to ourselves would be an understatement.

No one from the hosting agency—except a moderator—was known to even be present. His job was to cut microphones off at the 3 minute mark. He assured efficiency by keeping the line moving and reminded speakers that remarks would be public, and did nothing to highlight that CMS was risking our lifesaving treatments. 

The only response I heard was an email from CMS discouraging me from expressing patient dissatisfaction with the negative impact of a law designed to reduce the number of cures discovered.

This year, I volunteered again to offer my patient perspective. I was selected, and spoke at two of the sessions held in April.

The experience was night and day.

There was a moderator again, but this time, patients could see that there were several actual CMS employees on the video call with us. Listening at the “listening” session!

Patients responded to several well-constructed prompts, and we were able to interact with one another, keying on experiences, underscoring similar points of view, adding real-world results to a discussion with the government agency that is charged with carrying out this law.

Whether or not the 90-minute conversations will have any impact on the law’s implementation remains to be seen. However, I can say with certainty that they had an impact on me. The respectful back and forth, the heartbreaking struggles with illness, and how a drug was helping a symptom or even modifying the disease, was impossible to ignore.

Most interesting of all was the “dog that didn’t bark.” The reason President Biden championed this law was, in large part, to “reduce” the price of drugs. Even if it meant reducing the number of discoveries for patients like us.

But just like most every health policy, what the “experts” tell us we “need” is the opposite of our reality.

The price of medicine was mentioned only once or twice (the reason for the entire policy)/ 95% of the patient input was about how vital the medicine was, how much relief it brought, and how important even having the option was to them and their families.

The nearly unanimous support for having an uninterrupted pipeline of innovative treatments was a common sentiment. And losing that hope was unthinkable. Yet, interrupting it was exactly what the law was signed to do. 

CMS did a commendable job in soliciting patient experience. Now that they listened to how patients view the actual problem, I await to see if they actually heard us.