America’s Sickest Deserve Hope, Not a Life in their Parents’ Basement

Thirty years ago, as a congressional staffer, I never thought I would be diagnosed with a life-altering disease. I had every reason to be hopeful about my future. I was young, healthy, and solidly independent. Or so I thought.

After suddenly losing my vision, and a battery of tests, I was diagnosed with Multiple Sclerosis (MS). I was just 23 years old. While MS isn’t a death sentence, there is no cure and it means a life-long, unpredictable struggle with attacks on your nervous system.

Still, I never would have expected one of the biggest hurdles would be the policies coming out of Washington, threatening the treatments for the most aggressive diseases. As a beneficiary of these innovations, any policy threat to its continuance isn’t just short sighted and damaging to America’s leadership in fighting diseases…It’s personal.

Back in early 1993, when I was first diagnosed, there were no clinically proven treatments to slow MS.  None.

Over the next few years, my disease quickly progressed. Facing a fairly aggressive case, doctors put me on a new treatment, the first disease modifying therapy (DMT) for MS.

Despite its clinical and real-world success, my body didn’t respond well, and my MS “flares” continued. As a result, I was increasingly losing abilities - to balance, write or speak clearly, and even to swallow.

After one traumatic transition from a hospital to a nursing facility for rehab, I had my parents check me out and move me into their basement on Long Island. My only option, at 28 years old, was to move back into my childhood home.

Thankfully, a second DMT had recently been approved and was available.

When I first started that therapy, I was just glad there was another lever to pull. I had no idea it would buy me some of the best years of my life. This DMT halted the attacks and gave me the chance to recover.

Within ten years, I rejoined the career I loved, I met my wife, and had four healthy sons. That therapeutic helped me realize that MS wouldn’t define my life, it would only be a part of it.

However, as with many people living with aggressive disease, it wasn’t done with me yet. After almost two decades of calm, my body built a resistance to the treatment, and attacks began again. Fortunately, by this time even more treatments were available, allowing me additional weapons to choose in my fight to reclaim my life.  Again.

As I look back at this story, I’m filled with gratitude. How blessed I was to have multiple options thanks in large part to the scientists and drug makers that have worked tirelessly to give people like me another chance at life. 

I can’t put a value on being able to take my kids camping, help tie hockey skates or cheer at baseball games. The hope that was available to me should also be available to others. This hope for people facing chronic diseases is beyond measure. Unfortunately, one poorly crafted provision in the recently passed Inflation Reduction Act (IRA) seeks to remove this hope, threatening to reverse years of innovation and gains found through biopharmaceutical research and development. Threatened by instituting price controls and ultimately meddling with the results of a bipartisan compromise that has led to a thriving scientific ecosystem.

It will take years for us to realize the full impacts of the IRA, but industry stakeholders are already waving their flags of alarm, signaling this policy will undo decades of R&D. While the cost of healthcare is high, the cost of undoing promising therapies for patients is ultimately higher.

When the new Congress takes office, lawmakers should repeal this hair-brained attempt to disrupt America’s critical innovation efforts through the price control policies in the IRA. The world’s most prosperous nation should not tell its citizens with health challenges that their only option is to give up hope and move to their parents' basement.

John is a patient living with Multiple Sclerosis (MS) and advocates for the MS community. He is also the Founder and Chairman of Survivors For Solutions, a new nonprofit, nonpartisan patient advocacy group seeking to preserve and protect the medical innovations that give people hope. A 30-year public policy veteran, he previously served as Communications Director for the Office of Management and Budget (OMB), worked in both House and Senate Leadership, among other roles in government agencies and the private sector.