‘I knew it was bigger than a migraine’: Woman faces brain tumor without health insurance

August 31, 2018

Teresa Smith’s journey with cancer began a year ago when she started experiencing headaches and dizziness.

She went to her primary care doctor, who discussed how to deal with migraines.

“Even though I’d never had migraines before, I knew it was bigger than a migraine,” Smith said Thursday.

She went to UNC Rex Healthcare for a scan last September, and when doctors found a brain tumor, they scheduled the 38-year-old for surgery within days to remove it.

But shortly after that, Smith lost her job as an operations manager at a small marketing company, and with that, she lost her health insurance.

She recently learned that she has a second brain tumor.

“Not having insurance, that makes it a challenge,” she said. “The wait time is months, and the fees to get in with a specialist are several thousand dollars.”

Smith hasn’t had a biopsy due to her lack of insurance, so she does not know what type of brain tumor she has, nor does she know how she will pay for any treatment.

The tumors have prevented her from pursuing her passion of competitive dancing, and they make daily life a struggle.

“It has completely robbed me of my life,” she said. “Everything that I used to do I can no longer do.”

Dressing herself, combing her hair and dialing a phone have become chores.

“The day to day of just maintaining yourself, it takes longer. I take more breaks, and when you just don’t feel well, it’s just a struggle,” she said.

About 700,000 people in the U.S. are living with brain tumors, and about 16,000 die of brain cancer each year, according to the National Brain Tumor Society. But because brain cancer accounts for less than 2 percent of cancers, it receives minimal research funding.

“Brain tumors are relatively rare compared to some of the other more common human malignancies – breast cancer, lung cancer, prostate cancer. It’s also been a harder battle, quite honestly,” said Dr. David Ashley, director of pediatric neuro-oncology at the Preston Robert Tisch Brain Center at the Duke University Cancer Institute. “It’s a tough field.”

Ashley said the death of U.S. Sen. John McCain after his fight with brain cancer may put a new spotlight on the malady and the need for more research.

“It has a massive ripple effect through the community even though it is a relatively rare illness. I do think we need to do more research,” he said.

Smith said she tries to raise awareness and research funds but said she’s limited in what she can do.

“It is a vital organ. What can you do without your brain, a fully functional brain?” she said. “There needs to be more than 2 percent funding going towards brain tumors and brain cancer.”

Duke’s Tisch Brain Center is working on cutting-edge immunotherapy treatments for brain cancer, including a recent study using a modified polio virus to force the body’s immune system to fight the tumor.

“Conventional therapies like chemotherapy, radiation have really not been a huge success,” Ashley said.

In the polio virus trial, about 20 percent of patients with glioblastomas – the type of cancer McCain had – have shown long-term responses to the treatment. Glioblastoma is a “highly aggressive” form of cancer that usually kills people within 18 months, Ashley said.

“We think the future is in immunotherapy,” he said.

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