Sharon Beatty of Everett was diagnosed with stage four melanoma in June. The prognosis isn’t good. She hasn’t responded well to chemotherapy, and her family was pinning its hopes on a vaccine trial at the Clinical Research Center of the National Institutes of Health.
In late September, they began the paperwork to get her enrolled and her oncologist, Dr. Peter Jiang of Everett Cancer Partnership, contacted the NIH.
Beatty's daughter, Kat Korab, thought they would be able to get her into a study.
It seemed actually pretty encouraging. My younger sister is a scientist who works in the D.C. area. [She knew someone] who happened to work on the melanoma floor for NIH and talked to her and had gotten some information about some of the trials that are going on there. So we felt we had an inside extension for us as a family to be able to get her into a study.
But they haven’t heard anything. The government closure means the NIH isn’t recruiting any new patients. "As far as we know our oncologist hasn’t received a call back," said Korab. "This in particular is where you kind of feel kicked while down."
Melanoma is a difficult disease to treat. The survival rate at stage four is very low, so the development of a treatment is slow. The Seattle Cancer Care Alliance is finding some success with immunotherapy, but that therapy wouldn't help Beatty. She may be one of an estimated 200 cancer patients being turned away each week from the NIH because of the ongoing budget battle.
It can be very frustrating when you listen to the news and you hear people trying to rationalize that it’s not a big deal, because it’s just parks that are closed. It’s just silly. I don’t think people necessarily understand the gravity or the impact outside of Washington that this can have on people.
Though the center is keeping its door open for existing patients, NIH has furloughed three-quarters of its staff. The research center sees more than 10,000 new patients a year, often people who haven’t responded to standard treatments. But because of the budget impasse, people basing their last hopes on NIH treatment aren’t getting admitted.
Produced by Jason Pagano.