ICYMI: CZ’s Interview on the DC EKG Podcast

Our founder and Chairman, John “CZ” Czwartacki, sat down with Joe Grogan, former Director of the Domestic Policy Council during the Trump administration, and Eric Ueland, former Director of the Office of Legislative Affairs, to share his health journey, the importance of having multiple treatments, and the genesis of Survivors for Solutions. In case you missed it, here’s a recap of their conversation:

CZ discusses getting his start in government and being diagnosed with Multiple Sclerosis (MS) at 23.

When he was first diagnosed, no treatments to modify his disease existed. As CZ’s body began attacking its own nervous system, doctors effectively told him to “rub some dirt on it” and hope the symptoms did not escalate. CZ’s career had just begun, serving as press secretary for Rep. John Boehner, then as a senior official on the Dole-Kemp presidential campaign, and then back to the Hill as press secretary for then-Senate Majority Leader Trent Lott. But CZ’s disease began to take a toll. He experienced seizures and symptoms so severe that he was forced back into the care of his parents in the basement of his childhood home. A life over before it started.

By the mid-90s, CZ was having trouble walking, talking, and even swallowing. But over the course of just a few years, medical innovation brought about the first treatments to slow MS. Thanks to these breakthroughs, CZ was able to return to his work in DC. After the Hill, CZ joined a boutique public affairs firm and then allowed him to offer his expertise during a national emergency.

“I couldn’t walk the year before this, now I’m walking on the pile (at Ground Zero).”

Shortly after 9/11, CZ was tapped to lead communications for the Federal Emergency Management Agency (FEMA). He was there on 9/12, offering to help in any way he could, which turned into being named as head of public affairs for FEMA and its role in response and recovery to the terrorist attacks. 

CZ then moved to the private sector in January 2003, helping Verizon enter a new age of blogging, social media, and communication evolution. During that time, he and his wife had four boys and, after ten years, moved to Minnesota before CZ returned once again to DC in 2016—this time in response to a call to assist with the presidential transition.

CZ landed a dream job in the executive branch, working as Communications Director for the Office of Management and Budget (OMB) and for the former congressman he helped through the process, Mick Mulvaney. CZ accompanied Mick from there to the Consumer Financial Protection Bureau, then to the West Wing to assist Mick when he was named Chief of Staff to the President of the United States.

When Ueland asked about what it felt like to get this job, CZ laughed and said, “I don’t care if my scooter doesn’t fit in the White House elevator” and that he was going to make it work; after all, it was, a job in a building he had dreamed of from the age of 12, notwithstanding his disabilities.

As the excitement (and pressures) of work in the executive branch intensified, his body rejected a third disease-modifying treatment. As a result, CZ’s MS flared up once again. Luckily, by then, half a dozen cutting-edge drugs were available to him. He was able to manage his disease and enjoy his family, his friends, and the blessings that were afforded him by keeping a cruel condition suppressed longer than would have been possible before a pipeline of drugs had been discovered.

CZ discusses how policy created the environment for the medical innovations that allowed him to reclaim his life and the threat the Inflation Reduction Act (IRA) poses to these innovations in part three of his interview.

Four different treatments for MS empowered CZ to raise a family and continue his career in public service. None of these treatments existed when he was diagnosed in 1993. Thanks to the incentive structures established through bipartisan solutions like the Hatch-Waxman Act, medical researchers have access to the private sector funding required to create cures and therapies for patients. CZ explains how this policy cultivated an ecosystem of medical miracles.

But CZ also warns that recently-passed provisions, tucked into the IRA, passed during COVID without the work to garner bipartisan support, threaten to undo what has brought about so much medical innovation. The legislation’s drug price “negotiation” regime upends the system for developing innovative drug treatments. He calls for policymakers to “do the hard work” of figuring out how to pay for lifesaving, financially risky medical innovations.

“Everyone is a patient. Either they were in the past, or they will be in the future.”

Lastly, CZ shares how his work with Survivors for Solutions is changing patient advocacy. Rather than individual patient groups competing for individual government deals just like any other special interest, Survivors for Solutions advocates on behalf of all patients. CZ’s story illustrates the lifesaving power of medical innovation and how policy can foster its growth- or stand in its way. As CZ reminds us:

“We’re all on one team. We are fighting illness. We all know where this goes, but let’s do what we can while we’re here.”