Two weeks ago I lay in a hospital bed at the University of Pennsylvania’s Perelman Center for Advanced Medicine and watched a clear, garlicky-smelling bag of my re-engineered white blood cells drip into my veins.
The bag contained not only my collected T cells but also magic sauce from Novartis, the drug company financing a trial of a gene therapy for my specific mutation of multiple myeloma, a blood cancer.
This “living drug,” a CAR-T treatment, may revitalize my immune system and erase my myeloma tumors and save my life. It could also kill me.
Last month, the Federal Drug Administration approved the first CAR-T therapy, Kymriah, to treat a leukemia that mainly affects children. My myeloma trial is an outgrowth of that promising effort. Researchers say that just one of my retooled cells can kill 100,000 cancer cells, and they’ve infused millions of them.
But no one can guarantee me a happy ending. From my research, I figure I have a 1-in-9 shot at beating my wily myeloma — and then for only a year or so.
Still, I consider myself lucky. Fewer than 5% of cancer patients will get into potentially beneficial clinical trials this year, and I am one of them.
President Trump wants to cut the NIH’s budget further, by nearly 20%.
Since 2003, under Democratic and Republican administrations, the National Institutes of Health budget has been cut by 15.5%, after inflation. This has left far too little NIH money for basic research and prevention, including for oncology trials. Drug companies now underwrite about 71% of the thousands of cancer trials that are conducted in the U.S. each year.
This sets back basic cancer research in several ways. Because drug companies are investing millions, if not billions, to develop proprietary, patented medicines, they don’t share their discoveries as openly as the NIH does. Perhaps worse, they recklessly duplicate trials for certain common cancers, such as melanoma, to the point where around 40% fizzle out for a lack of patients to test.
By contrast, my doctors and I couldn’t find a trial slot for my disease, from Seattle to Hackensack, except for the very last opening at Perelman.
Initially I was rated behind another desperately ill person and received a gut-punch email: “We can not offer you a spot.” In the end, I replaced a sick patient who did not meet the trial’s strict protocols, even though the patient needed treatment as much, or more, than I did.
Leading medical scientists say it is in our national interest to fund far more research, especially in cutting-edge immunology, which appears close to curing blood cancers. But although there is surely room in President Trump’s 2018 federal budget of $4.1 trillion to fund more government cancer trials, he wants to cut the NIH’s budget further, by nearly 20%.
“To think we are going to stop funding biomedical studies and lose skilled scientists seems almost crazy,” Dr. Stephen Grupp, a leading leukemia researcher at the Children’s Hospital of Philadelphia, told me. “This is the time to invest, not back off.”
The American Cancer Society’s chief medical officer, Dr. Otis Brawley, noted in a telephone interview that the Department of Defense spends about as much money on bands and music as the NIH spends on breast cancer: “Where are our national priorities?”
If we do not invest in more research, there is a good chance that we could cede our leadership in biomedical innovation to China or other countries. Had I not gotten the last slot at Perelman, my oncologist was suggesting we explore Beijing, where Chinese researchers are reporting incredible myeloma outcomes. All I had to do to get a trial slot, apparently, was hand over $50,000 cash.
Whether the breakthroughs happen in Philadelphia, Seattle or Beijing, cures for diseases like mine are on the horizon. The sum of medical knowledge doubles every 73 days or so. Researchers, including my own doctor at Perelman, foresee a day in the early 2020s when people with blood cancers will be cured by precision medicine immunology — as outpatients.
Millions of patients will follow me, and many of them will be cured. But they could be cured in the next two or three years, rather than five to seven, if Trump were aggressively expanding the NIH budget. Starting by, say, buying fewer Army bass drums and more cancer bullets.
Frank Lalli was the founding editor of New West magazine. He is the author of “Your Best Health Care Now.”