Duluth News Tribune: Threatening the development of cures isn't very Minnesota nice

Minnesota nice might be a cliché, but it holds a heckuva lotta truth. When I first moved to the state in 2012, that truth was my experience: block parties and a spirit of community unlike anywhere else in the country. This state is also second to none in its appreciation of discovery. No wonder it’s the home to Medtronic, 3M, and the Mayo Clinic.

We also have among the highest rates of multiple sclerosis, or MS, an incurable condition that affects nearly 1 million people around the U.S. I was diagnosed with the disease 30 years ago.

It’s likely that MS impacts you, a close friend, or a loved one. It has touched even our elected officials. Minnesota’s Sen. Paul Wellstone disclosed his MS several months prior to his tragic 2002 plane crash.

The year 1993 is notable, not just because it was the year I was diagnosed but because the first proven treatment was approved by the FDA. Before then, generations of patients suffered their cruel disease with little hope.

Forty years ago, the U.S. was a laggard in medical discovery. That all changed in 1984 when ideological opposites — Rep. Henry Waxman, D-California, and Sen. Orin Hatch, R-Utah, hashed out a pathway for the discovery of breakthrough medicine and the increased production of lower-cost generic medicines. This saved billions of dollars and millions of lives.

Including my own.

Over three decades, I have required four different medicines, none of which were even available prior to my diagnosis. The wonderful life I’ve had — married for 22 years, a meaningful career, and the glorious chaos of a family of six — I owe to the unnamed medical researchers who developed the medicines I need.

This was why I was so distraught when a bill passed last year, the poorly named Inflation Reduction Act, that included ending the Hatch-Waxman bipartisan consensus and 40 years of pro-innovation policy that delivered these critical treatments.

I was asked to testify last month before Congress on the risks of changing this policy. I spoke to lawmakers just yards from where I had my initial MS symptoms while working as a congressional staffer. I explained to the committee how important maintaining this pipeline of innovations is to American patients. I said that “preserving the hope” it provides is “what matters most.” It was only because I had options A, B, C, and D that I was able to remain upright and productive.

As anyone who has lived with a serious health condition knows, multiple medications are necessary until you find one that works. This is why preserving this pipeline is so vital.

In 2022, when the Inflation Reduction Act passed with these price-control policies, the Congressional Budget Office predicted it would reduce the actual number of new discoveries. Let me repeat that: Even the most ardent advocates of these price-control policies concede they knew they would lower the number of life-changing treatments available.

Instead of suspending this program, however, our elected officials are charging forward. Minnesota’s own Sen. Amy Klobuchar, a Democrat, is proposing with her SMART Prices Act to double down on a price-control plan. This risks the needs of every current and future patient. I described this policy during my testimony as “a sick experiment on Americans already sick with disease.”

No one knows the high costs of life-saving breakthrough treatments better than me and my family. I would welcome a discussion about best practices for creating more affordable access, but only if we don’t risk discovery and create an existential threat to my life and millions of others in the process.

Because, ultimately, a drug never discovered has an invisible cost that is astronomical.

Sen. Klobuchar and her colleagues supporting this bill are recklessly legislating instead of understanding how their sickest constituents are harmed as a result.

With so many Minnesotans requiring a pipeline of medications to live, why would a public official who represents them be pushing for fewer? It doesn’t seem like a very Minnesota nice thing to do.

John Czwartacki is a multiple sclerosis survivor and founder and chairman of the patient-advocacy group Survivors for Solutions ( survivorsforsolutions.org ). He splits his time between Edina, Minnesota, and Washington, D.C.