Don't stop the clock on medical research

Life with multiple sclerosis (MS) today is very different than when I was diagnosed in 1992, which is why I’m so worried to see a representative in Congress from my home state, Rep. Marsha BlackburnMarsha BlackburnTikTok introduces new parental controls Abortion wars flare up in Congress Hillicon Valley: Judge approves T-Mobile, Sprint merger | FTC to review past Big Tech deals | State officials ask for more cybersecurity help | House nears draft bill on self-driving cars MORE, turning the clock backward.

When I first learned I had this disease, there were no widely-available drugs or treatments on the market to help people like me. With so few treatment options back then, one of the first questions asked of an MS patient was often, “When do you plan to stop working?” A diagnosis meant the end of life as you knew and loved it.


But despite the lack of resources available at the time of my diagnosis, I wasn’t going to be someone who sat back and shrank from the world. With my great team of doctors, I created my own support group of friends and family, and as soon as it became possible, I began a regimen of what has become a lifetime of drugs to stop the progression of this disease. The first drug I tried, Betaseron, was in such high demand there were waiting lists, lotteries, and years-long waiting periods for those of us who wanted the chance to try it.

Like many people living with MS, my life has become divided in two parts: “before MS” diagnosis and “after.” Before MS, I was a busy young adult. I owned my own business at the time, worked  50+ hours a week, and enjoyed a life full of friends, family, and promise. After MS, I live with often-crippling fatigue, frequent numbness and disorienting vision problems. I frequently rely on a cane to get around. There was even a time when I was confined to a scooter for several months. (Thankfully, that time has passed – for now.) After MS, I have had to work – hard – every day, to live on my own terms.

Twenty four years later, there is still no cure. But I’m doing the best I can to live a normal life, thanks in large part to the treatments and drugs made possible by medical research, like the kind now at risk because of party politics on Capitol Hill.

Rep. Blackburn is leading the House Select Investigative Panel formed specifically to investigate false and inflammatory allegations that scientists and abortion providers have profited from fetal tissue donation and research. The committee is abusing its power and the effect is very troubling for researchers and patients alike: Scientists and lab techs are receiving hate mail and death threats. The supply of fetal tissue for researchers is drying up. And now, as a result, promising research into MS is stuck in its tracks.

Research using fetal tissue has been done since the 1930’s to aid in some of the most important medical advances of our time. According to experts from the American Association of Medical Colleges, the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists, fetal tissue is essential to current research on Parkinson’s disease, cancer, diabetes, and many other debilitating conditions. Common vaccines for previously rampant diseases like polio, rabies and chicken pox were also created using fetal tissue research. And it’s vital to ongoing studies of the Zika virus, which threatens the health of an ever-growing number of pregnant women and their children.

But today, rather than moving forward with these important studies that will help countless people, some members of Congress, including Rep. Blackburn, are putting a stop to them in order to score political points.  

When I was diagnosed with MS, I knew my life would never be the same, especially because at that time there was almost nothing available to treat it. But I told myself every night before I’d go to bed that I had two choices for the next day: give up, or fight. That’s true, even today.  Every new breakthrough, new treatment, new medication (and I’ve been on most of them) - this is what has kept me going for 24 years.

Congress should be doing everything in its power to find treatments for and cures to these debilitating diseases, but instead it is doing the opposite.

Stopping this research in its tracks doesn’t just harm scientists in a lab, and the grandstanding doesn’t just impact one’s political career in Washington, DC. This affects millions of people around the world who live with these diseases every single day.

People living with MS, with Alzheimer’s, with spinal cord injury, with ALS, with cancer, with diabetes – we have something in common. In spite of everything, we have hope. We live each day trusting that a new treatment is on the horizon, hoping that a cure is possible. Shame on Congress and Rep. Blackburn for making us wait even longer.

Kathleen Cullen lives in Kingston Springs, Tennessee. She was diagnosed with Multiple Sclerosis in 1992.