Patient Interrupted: Shutdown Delayed Care for Mom With Cancer

PHOTO: Michelle Langbehn, 30, has publicly opposed the government shutdown because it delayed her from hearing about inclusion in a clinical trial.
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Michelle Langbehn waited in fear this month as the government shutdown threatened to derail her cancer treatment.

She halted chemotherapy while awaiting a decision about whether the National Institutes of Health would allow her to participate in a clinical trial for patients with sarcoma, a rare form of cancer, but the shutdown delayed her answer by almost a week. She ultimately found out she did not qualify for the trial, but said the delay cost her time she might not have.

"Cancer knows no boundary," she said, adding that she's discovered a new sarcoma growth in her collarbone in the last several weeks.

Read about how the shutdown prompted fear and confusion among cancer patients.

The day before the shutdown, a coordinator at NIH told Langbehn she had received Langbehn's paperwork and would inform her soon about whether she could begin the clinical trial. Langbehn had gone off chemotherapy to prepare for the trial and had not had treatment since she underwent surgery in July.

"I really thought I was going to be getting into that trial at the NIH," she said.

Langbehn heard nothing from the NIH for three days, leaving her to wonder whether she was growing new tumors as Congress argued.

And she wasn't alone in her predicament. Each week the shutdown continued, the enrollment of 200 new patients would be delayed, officials said.

Read about how the shutdown affected health programs.

"A matter of days might not seem like something huge for someone else, but it's really big for a cancer patient," she told ABCNews.com. "It scares me emotionally that I don't know what my cancer is doing. ... My last scan was in September. I don't know what's happened in this last month."

So she started a Change.org petition two weeks ago to raise awareness about the shutdown's impact on cancer patients like herself.

"I'm furious that Congress has chosen to shut down the government and leave so many of us behind," she wrote in the petition. "This is not just about the debt ceiling or national parks."

To date, she's gathered almost 150,000 signatures on her petition titled "Help me fight cancer and stop the shutdown."

Finally, on Oct. 8, she got the call she'd been waiting for, but not the answer she'd hoped for. She was disqualified from the clinical trial because her stage 4 sarcoma was in her bones, not in her soft tissue.

The shutdown cost her valuable days she could have spent trying to get into another clinical trial, she noted. Still, she's hopeful. She was diagnosed with stage 4 sarcoma when her daughter was eight weeks old, and was told she would survive only a year.

She's still forging ahead after nine months of chemotherapy, several surgeries and two rounds of radiation. "I refuse to let my daughter grow up without a mother," she said. "That gave me the fight to keep going."

The end of the shutdown is a huge weight lifted off her shoulders, she said, because it's one less thing to trouble cancer patients.

"It's not about winning or losing," she said. "It's about saving lives."

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