One Cancer Patient’s Message To The Lawmakers Who Shut Down The Government: ‘Lives Are At Stake’

CREDIT: Courtesy of Michelle Langbehn

30-year-old Michelle Langbehn and her young daughter

The current government shutdown is already having a devastating effect on poverty programs, rape crisis centers, preschoolers, veterans, the economy, and the federal workers who currently aren’t able to earn a paycheck. And that’s not all. Cancer patients represent a particularly poignant example of the harm that the shutdown is causing, as the National Institute of Health (NIH) is currently unable to accept new patients or begin new clinical trials.

Each week, about 200 people start clinical trials at NIH to test out experimental treatments, typically available as a last resort for the patients whose illnesses haven’t responded to anything else. As long as the government is shut down, however, those people will be forced to wait. Unfortunately, many of these Americans don’t have enough time to keep delaying their treatment.

Michelle Langbehn, a 30-year-old mother with a rare form of cancer that can’t be treated with traditional chemotherapy, was in the process of enrolling in a clinical trial to test a new cancer drug that may help stem the spread of her disease. But that process is now on hold, and Langbehn says she’s “furious” that intransigent lawmakers may be robbing her of extra time with her young daughter.

“This was not supposed to happen. Nobody wanted the shutdown to happen,” Langbehn pointed out in an interview with Wonkblog’s Sarah Kliff. “If I had a message, it would be that lives are at stake.”

She noted that Congress members should understand this “isn’t just a matter of inconvenience” for the patients who are waiting for treatment. “This is a matter of life or death. I’m not just doing this for myself. There are 200 people that are trying to get into clinical trials each week. I want to speak for all of us.”

Leo Finn, a 48-year-old father of three, is another one of the patients who is stuck in Langbehn’s situation. After more than six months of chemotherapy failed to help shrink the tumors growing on his liver and bones, Finn decided to seek out experimental drugs. He wanted to enroll in trials to test the same drug that might help Langbehn. Now, thanks to the government shutdown, he won’t be able to yet.

“I was shocked. How can they just close the doors?” Finn told the Patriot-Ledger last week. “Don’t shut off medical procedures, stuff like that that affects people’s lives. It’s not like [you can] put a Band-Aid on it and walk away. This is cancer. This is something you can die from.”

And the shutdown isn’t just affecting adults’ lives — it’s also impacting children’s. The NIH accepts an estimated 30 children each month for treatment in its clinical trials. Of those kids, about 10 of them have a rare form of cancer.

Eight-year old Maddie Major is one of those kids. The clinical trial she needs to help fight her leukemia still needs to be approved by the Food and Drug Administration, but that won’t happen while the government is still shut down. Maddie’s mother, Robyn, told a local CBS affiliate that she can’t believe that lawmakers are playing games with people’s health.

“I am completely blown away by how callous and how carelessly they’ve just kind of used us as their pawns to push their own agenda,” she told a local CBS affiliate. “For Maddie, this is truly life or death. This isn’t a game.”

NIH’s director, Francis Collins, says that the agency’s clinical center is often called the “House of Hope.” Now, that source of hope isn’t available for hundreds of Americans who are either struggling with illness or watching one of their loved ones battle a rare disease.

The situation is currently being used as somewhat of a political talking point. GOP lawmakers have suggested a piecemeal solution to the current shutdown, offering legislation to fund a few areas — the Veterans Affairs Department, the city of D.C., national parks and museums, and the NIH — while the rest of the federal government remains closed. Meanwhile, Democrats are pushing for a funding bill that will re-open every department of the government, rather than picking and choosing. After Senate Majority Leader Harry Reid (D-NV) articulated that position, Republicans were quick to accuse him of not caring about kids who are suffering from cancer.