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Worried about losing insurance, people stockpile medications

Phil Walter/Getty Images

Charis Hill of Sacramento takes prescription-strength ibuprofen for ankylosing spondylitis, a severe inflammatory disease that causes spine and joint pain. These days, she makes sure she always has plenty on hand.

"Even if I'm not out of the medication, I've been asking my doctor to refill it, so that I have it in case I lose access to it," Hill says.

"This is not me wanting more medication," she says, "this is me afraid that I'm going to lose the ability to get it in the future, so preparing for the apocalypse almost. And I know I'm not the only one."

With President Trump and the Republican-led Congress working to repeal the Affordable Care Act, some Californians with chronic diseases say they're stockpiling medications and supplies in case they lose their health insurance or access to critical treatments.

It's difficult to determine how common this phenomenon is, since no agency tracks it. But advocates from two other chronic disease communities also say that the political fight over health care in Washington has convinced a lot of people to take matters into their own hands.

"It's almost like batten down the hatches before a storm," says Peg Abernathy, who advocates on behalf of people with Type 1 diabetes. "People go out and buy water and food and in our case, we need to make sure that we are as up to date as possible with our supplies in case something happens."

People with Type 1 diabetes are insulin-dependent, so Abernathy says she and others are filling insulin prescriptions as soon as they're available. She says some are stretching supplies by limiting how often they check their blood glucose level with test strips, which can be costly.

It's dangerous to try to save money by testing blood sugar less frequently, she says, adding, "anytime a person with Type 1 tries to stretch their supplies … they're looking for trouble."

The Affordable Care Act was a relief for patients who had faced barriers to insurance coverage due to their chronic conditions. Congressional Republicans' replacement proposal, the American Health Care Act, would still prevent health plans from denying coverage to people with preexisting conditions. But if people let their insurance lapse for more than 30 days, the law would allow insurers to raise their premiums by 30 percent for the first year of renewed coverage.

The uncertainty about how the health care debate will ultimately play out is triggering a lot of fear.

"I have a lot of people that are frightened because they don't know when and/or if their insurance is going to be snatched from under them," says Staci Mickens, who runs support groups for people with multiple sclerosis.

She says some people with multiple sclerosis are taking half-doses of drugs, although she tells them, "that's not a good idea." She says some are using the internet to exchange unused drugs, but she discourages this as well.

Ankylosing spondylitis patient Charis Hill says it feels "dirty" to stockpile medication, but calls it an act of "self-preservation."

She says friends of hers with other chronic diseases are taking daily medications less frequently. Some told Hill they're expediting surgeries, out of fear that the procedures won't be covered later.

"What other option do we have?" she says. "Do we just wait and hope that we'll be able to refill whatever medication it is that we need in the future? Or do we expect the worst, which we've kind of been trained to do as people with chronic diseases?"