Shutdown threatened lifesaving medicine for Beaufort resident

10/18/2013 7:33 PM

01/02/2014 9:06 AM

Saturday almost ushered in David White’s last dose of Tasigna, a pill he was receiving free of charge to treat his chronic myeloid leukemia.

The 31-year-old Beaufort resident was participating in a clinical trial with drug maker Novartis, and he qualified for more of the $2,300-per-month drug — if he could prove his date of eligibility for Medicare. That day falls in August 2014, two years after White’s illness forced him to file for disability.

As proof, Novartis required an official document from the Social Security Administration, at a time when the agency was severely slowed by a 16-day, partial government shutdown.

It was only once the shutdown ended, following Congress’ vote to fund the government through Jan. 15, that White got what he needed to secure his lifesaving treatments.

To his family, that’s not good enough.

“I was just livid. Cancer is something you just don’t mess with,” said Stacy White, David’s mother and a retired nurse. “And it’s horrible that government officials can’t give you something so minor as a piece of paper to save your life, and nobody seems to know an answer.”

Stacy White, 47, was one of a handful of South Carolina residents who found her family’s access to health care threatened by the political struggles playing out in Washington. Several people with unusual circumstances contacted the office of U.S. Rep. Mark Sanford, R-Charleston, during the shutdown, said his spokesman, Jon Kohan.

The Social Security Administration did not verify benefits during the shutdown, and an employee told Stacy White no one could access her son’s records.

A spokesman for the Social Security Administration would not say whether it was possible to obtain the document online. However, several government employees advised the family to try that. A staff member of Sanford’s Lowcountry district office was later unable to do so when she tried herself, Stacy White said.

Meanwhile, Novartis would not bend. A spokeswoman for the company said the document was required.

David White rationed his thin supply for a week, until his medication supply was restored to normal Friday. Stacy White worries others will face similar problems if the government shuts down in February, when Congress must again address the country’s debt ceiling.

“This is just a temporary fix,” she said. “There’s other people out there in far worse shape than David, and what’s gonna happen to them?”

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