Last September I spent a day on Capitol Hill. I had gone with a group of fellow patients to lobby for an increase in funding for the National Institutes of Health. We spent a full day meeting with senators and representatives to share our experiences of living with chronic illness. Some on the Hill were interested in what we had to say, others less so. My group included a physician and her daughter, a young man and his fiancée, and myself. Each of us had a story to share, and each of us was the direct beneficiary of some of the country’s finest medical research institutions.

In my own case, I am a regular patient at the Medical University of South Carolina. The team of researchers on my disease includes scientists from more than a dozen countries. Patients come from all over the region to receive care, participate in research, and support each other. There’s a feeling of solidarity among patients and researchers at MUSC that comes from a deep, existential place. We’re all in it together working for the common good.

I felt that kind of solidarity in Washington as I walked with other patients from office to office, listened to their stories, and shared with staffers. The National Institutes of Health has long enjoyed strong bipartisan support. Eighty percent of its money goes directly to more than 300,000 researchers at medical centers and universities across the country. The funding supports these jobs, deepens our understanding of how diseases work, and develops new treatments and the myriad biotech industries that spring up around them. Additionally, NIH money attracts some of the best and brightest minds from around the world. In a time when we keep hearing about a “brain drain,” the NIH is responsible for bringing some of the world’s smartest people to the U. S. As The Washington Post says, the NIH is the “crown jewel” of biomedical research. In keeping with that, I might add that the Medical University of South Carolina is the crown jewel of our state. At least that’s what I told my representatives.


What struck me last September were the varied responses I received. Senator Graham’s office strongly supported the NIH, Senator Scott’s office seemed interested, and Representative Sanford’s office was nonplussed. In fact, after listening to the gut-wrenching stories of the people around the table, Sanford’s staffer had only one question. How much would it cost? What was the dollar figure? He looked past the mother and her daughter, who had just finished speaking, and addressed our policy aide. I stayed around for a moment, hoping to persuade the staff of the value of MUSC to our state, the extraordinary research that is happening there, and the need to keep multi-year studies funded without interruption, but they waved me off. All they wanted were the numbers, they said. As it turned out, that was our sixth and final visit of the day. We walked outside and tried to remind ourselves of the other staffers who had listened and asked questions about our stories. I’ll never forget the girl who had sat with her mother and spoken of how chronic illness had affected their family. The last word she heard in Washington was that her mother didn’t matter; the money did.

So I can’t say that I was completely surprised when the president released his budget, which proposed cuts to the NIH. The severity of the cuts, however, was a shock. We have now been given a budget that would take $5.8 billion from the NIH, nearly 20 percent of its discretionary funds. This would do irreparable damage to medical research in this country, and it would directly affect us in the Lowcountry. Can you imagine MUSC making do with 20 percent less? Can you imagine the physicians, researchers, and patients learning that the government doesn’t share their sense of mission? Can you imagine the job losses in health care, biotech, and pharmaceutical development that would ensue? More importantly, can you imagine the loss to our shared sense of humanity? After all, on the most basic level we all need care. And diseases don’t ask for your voter registration card. Republicans, Democrats, and Independents all get sick.

It makes me wonder if we might amend these radical cuts to include a little money for otolaryngology. Because when the country cuts off its nose to spite its face, we’re going to need a doctor for that.

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