For a cancer patient, the government shutdown may be a matter of life or death

Leo Finn was diagnosed with a rare form of bile duct cancer in February. He tried chemotherapy, but the cancer quickly spread to his liver and into his bones. 

Finn’s doctor at the Dana-Farber Cancer Institute in Boston suggested he try cabozantinib, a drug that had successfully treated thyroid cancer but had not yet been tested on other forms of cancer. The Buzzards Bay, Mass., resident and father of three had been scheduled to undergo tests this week to get the drug, as a part of a new clinical trial overseen by the National Institutes of Health. But the trial was put on hold Tuesday because of the government shutdown.

A website operated by NIH and the Food and Drug Administration where new patients must first enroll before receiving the drug had ceased operations because of the shutdown.

Finn is just one of potentially hundreds of patients around the country who have been turned away by NIH this week because of the shutdown. A spokeswoman for the agency estimated that about 200 patients a week enroll in current or new clinical trials held at NIH’s facility outside Washington. Thirty of those patients are children — and of those, about a third are kids suffering from cancer. And until the federal government is open again, they are all being turned away.

“I was shocked,” Finn, told the Patriot-Ledger. “How can they just close the doors?"

The stats expose the human toll of the government shutdown, which entered its third day on Thursday. For most Americans, the federal work stoppage so far has been little more than a minor inconvenience, but for those who depend on a federal paycheck or other government services, the shutdown has had more dire implications.

Between 800,000 and 1 million federal workers have been off the job since Tuesday and face the prospect of no salary for potentially weeks, as Congress remains deadlocked over the budget.

And there were countless other stories around the country of the human impact of the shutdown — from the cancellation of Head Start programs in multiple states to the potential disruption of nutritional programs for women and children.

The Associated Press reported that military commissaries, where service members and their families as well as veterans can buy inexpensive groceries tax-free closed Wednesday — likely making it harder for them to make ends meet.

The shutdown had been set to have a more tragic impact in Idaho, where National Park Service employees have been involved in a search for a hiker who went missing at Craters of the Moon National Monument. The Park Service at first said it would be forced to call off the search — as all of its 19 employees were to be furloughed because of the shutdown — but has since received approval to keep 10 employees on the clock to continue the search.

There continues to be growing concern about the economic impact of the shutdown, especially in cities where businesses have grown dependent on customers who are federal employees. In Washington, eateries all over the city were reportedly cutting back staff hours because their businesses were empty. Near Federal Plaza in New York, where many of the city’s estimated 50,000 government workers are based, the streets have been far emptier than usual.

Within the medical community, the biggest concern about the shutdown was its negative impact on patients like Finn for whom clinical trials after often last-chance efforts at survival. But officials also cited fears about what the shutdown could mean long-term for cancer research.

Among other things, the annual deadline to apply for a grant for medical research from NIH is next Monday. But if the government is still closed, the applications will not be processed until the shutdown is over — which could leave a gap in funding and halt crucial research projects.

“It is the long-term disruption to government services that could be even more devastating to research innovation and the overall health of the nation for decades to come,” said Clifford Hudis, president of the American Society of Clinical Oncology — which represents thousands of cancer physicians around the country.

But it’s the short-term impact of the shutdown that is most devastating for Finn, who said he is unsure what to do next. His doctor has offered to put him back on chemotherapy until the shutdown is over — but he is concerned that could affect his ability to qualify for the clinical trial. He would have to be off chemo for four weeks in order to take the new drug.

He expressed frustration with the political stalemate in Washington.

“Don’t shut off medical procedures, stuff like that that affects people’s lives,” Finn told the Patriot Ledger. “It’s not like put a Band-Aid on it and walk away. This is cancer. This is something you can die from.”