Auburn resident Michelle Langbehn has become an unintentional media celebrity, one of the faces of the federal shutdown. In the past week, she has been interviewed on CNN, MSNBC, Al Jazeera America and a Sacramento TV news station, and she’s appeared in the pages of The Washington Post.
“I’ve gone viral,” said Langbehn, 30. “And I’m very grateful.”
She needs a clinical trial to save her life. But because the National Institutes of Health has put new enrollment for its experimental drug programs on hold for the duration of the government shutdown – and because three-quarters of NIH’s employees have been furloughed – Langbehn has to wait.
So do another 200 patients each week, many of whom have turned to NIH clinical trials as their only chance of survival. Of that number, 30 are children, NIH officials have said.
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Their stories have filtered out from other corners of the country: stories of desperately ill Americans whose quest for a cure is on hold because their experimental treatments have become collateral damage of the shutdown. The 8-year-old Baltimore girl with stubbornly recurring leukemia. The 48-year-old father of three from Massachusetts with metastatic bile duct cancer. The Kansas City man stranded at a federal hospital after the NIH put his bladder cancer treatment on hiatus.
More than 775,000 Americans participated in government-funded clinical trials in 2006, the latest year studied, according to the Center for Information and Study on Clinical Research Participation. The vast majority had little other hope for combating their illnesses.
“Federal government funding of cancer research is critical,” said UC Davis Cancer Center specialist Dr. David Gandara. “That’s why this should be important to the average American. They’re likely to get cancer, too – or their spouse will, or their child, or their close friend.”
But the days have ticked by without answers for Langbehn and so many others looking to experimental treatments for cancer and other devastating illnesses. While politicians debate and posture, while much of the national media covers the standoff like some sort of sports competition, Langbehn waits.
She has proved to be an effective spokesperson for her cause. Poised and eloquent, she makes her case to one media outlet after another, this young wife and mother who simply longs for a future.
Langbehn, who teaches autistic children, began having problems when she was pregnant with her daughter, 19-month-old Lula. A sharp pain in her side during pregnancy turned out to be a large tumor on her kidney, which doctors said was benign. Not long after Lula’s birth, Langbehn sought treatment for the neck pain she developed during pregnancy, and doctors discovered that she had Stage IV fibrosarcoma, a rare cancer that had spread to her spine and skull.
In July 2012, her oncologist gave her two years to live.
She promised Lula that she wouldn’t let her little girl grow up without a mother.
With the support of her husband and parents, Langbehn underwent spinal fusion surgery and the removal of more tumors, and she endured radiation and two lengthy rounds of chemotherapy.
“I talked to my doctor about what to do, and he recommended we start looking at clinical trials,” she said. “My body wasn’t responding to the chemo the way it used to. After so many cycles, it’s time to start looking for new trial options.”
A few weeks ago, she began the NIH process to enroll in its clinical trial of a drug called cabozanitib, which inhibits tumor growth and has shown considerable success in treating a variety of cancers. Langbehn sent her records for evaluation. On Sept. 24, her NIH clinical research coordinator warned her about the potential federal government shutdown, a result of the stalemate over the budget. Six days later, the NIH ground to a halt, although most patients already enrolled in experimental treatments are being allowed to continue in those studies.
With her best hope for combating her fibrosarcoma hanging in the balance, Langbehn emailed CNN. She set up a support page on www.change.org to draw attention to her campaign to get treatment. The page, entitled “Help me fight cancer and stop the shutdown,” had gained more than 76,500 supporters by Tuesday afternoon.
She started talking to the media, telling her story again and again. And it’s had some results. On Tuesday, the NIH doctor in charge of its cabozanitib clinical trial called Langbehn to let her know she didn’t qualify for the NIH study she had applied to join.
“I asked if it’s possible to receive the same drug through the compassionate access program,” said Langbehn. “And the NIH does offer that program.”
Compassionate use programs allow desperately ill patients with no other options to be treated with medications not yet approved by the U.S. Food and Drug Administration. But compassionate use requires permission from the drug company – in this case, Bristol-Myers Squibb – as well as either the NIH or FDA.
So Langbehn still waits.
“It’s difficult that my daughter is going through such a tragic ordeal,” said Langbehn’s father, Bob Rubaszewski. “But we’re optimistic we’ll get compassionate use for Michelle.”
Michelle Langbehn remains hopeful, too.
“It’s not just me who’s affected,” she said. “It’s so many others. The fight has not stopped.”