Why I Take Trump’s Proposed NIH Budget Cut Personally

On the first floor of the Clinical Center at the National Institutes of Health, there is a corridor lined with dozens of black and white photos of NIH and NIH-funded scientists who won prestigious Lasker Awards — often called “America’s Nobels” — for contributions to the understanding of human disease. Altogether, NIH scientists have won an astounding 195 Lasker Awards. A half-dozen of the scientists whose pictures are on that NIH wall developed “combination chemotherapy.” The breakthrough cancer therapy was highly controversial in the 1960s because the early drug combinations were so toxic to patients. But combination chemo became less controversial as it became successful in treating leukemia and Hodgkins’s Disease. Those scientists, with dedication and skins thick enough to withstand withering criticism from many in the medical community, eventually produced the first curative chemotherapies.

Many of the names on the wall are familiar to me because my father, Seymour Perry, a hematologist, worked with those scientists at the National Cancer Institute in the 60’s. As a kid, I often heard my Dad talk about them — Tom Frei, Jay Freireich, Vince DeVita, Gordon Zubrod, and Paul Carbone, among others. They were pioneers in cancer treatment.

Now, as an NIH patient myself, I often walk by the photos on my way to get my blood drawn in the nearby phlebotomy department. The pictures remind me not only of my late father but of my good fortune to be treated at NIH, one of the premier medical research hospitals in the world.

I was diagnosed in London back in 1991 with a vanishingly rare disease called tumor-induced osteomalacia (softening of the bones) or TIO. The tumor, which finally was found five years after my diagnosis, eventually transformed into an even rarer cancer. In 2013, scans showed I had “widespread disease.” Rather suddenly, or so it seemed, my life was threatened. But that was nearly four years ago, and I’m still here. In fact, I’m feeling quite well and optimistic about my prospects.

I owe my good fortune in large part to NIH and my longtime doctor there, Michael Collins. Collins is one of the world’s foremost experts on TIO. In 2015, with his help, I enrolled in a clinical trial of a new targeted cancer drug. The trial was at a nearby cancer treatment center and Dr. Collins worked closely with the excellent oncologist there. The cutting edge drug, by “turning off” an enzyme in a tumor growth pathway, knocked back the tumors.

I generally don’t use the word “miracle” because my treatment success didn’t appear out of thin air. It was the result of science, and the efforts of NIH, as well as of Novartis, which developed the drug, and my oncologist at Baltimore’s St. Agnes Hospital, where I was in the clinical trial. I am particularly grateful to NIH because my team there has been tenaciously searching for answers to the mysteries of my disease for years. Dr. Collins and his colleagues are not only on top of the scientific advances, but they have always been caring and supportive, something that can’t be taken for granted in today’s medical system.

My Dad worked for NIH for nearly 20 years, and several decades later, I walk the hallways he did, and appreciate the way he did the many virtues of NIH — its focus on science, including the basic science that lays the foundation for treatments that help patients, its treatment of patients for free in exchange for their participation in a research protocol, its roster of top scientists, many of whom work for less than they would earn in the private sector.

My father, who took a pay cut to work at NIH as a public servant, bitterly resented Ronald Reagan when he famously said, “The nine most terrifying words in the English language are, ‘I’m from the government and I’m here to help.’” Well, NIH gives the lie to that silly slogan. It has helped countless patients all over the world. It’s an example of government working well and is worthy of national pride. As Yale’s Dr. F. Perry Wilson recently said in a MedPage Today editorial, NIH “is a wonder of the modern world. An American wonder.”

Being a “wonder” seems to me to be consistent with “making America great.” So why in the world does the president want to cut 18% — nearly six billion dollars — from NIH’s budget? Keep in mind that such a massive cut wouldn’t hurt just NIH — it would set back research at hospitals and labs all over the country. Only 10% of NIH’s budget is spent on NIH scientists and government labs. 80% goes to NIH grantees — hospitals and medical institutions throughout the US. (Disclosure: I am an unpaid board member of a nonprofit research firm, the Medical Technology and Practice Patterns Institute, that receives NIH grants). And there are further knock-on effects. Dr. Wilson cites a Journal of Law and Economics study showing that “every dollar spent by the NIH in basic science research stimulates $8.40 of industry investment.”

Wouldn’t the taxpayers, every one of whom is a patient at some point in their lives, be better served by, say, taking money from the dubious Mexico wall, and putting it back into our “wonder of the world,” the National Institutes of Health?