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Prescription for pain

If you pay for good health insurance, shouldn’t you be able to afford the medicine you need?

For Kristin Agar, a 63-year-old social worker in Little Rock, Ark., this has not been the case.

In 2008, Agar began experiencing strange symptoms. Her feet swelled, her joints ached, a rash appeared on her face, and every night she would get a fever that would disappear in the morning.

Her doctor diagnosed her with lupus, a disease in which the body’s immune system mistakenly attacks healthy tissue, including the skin, joints, brain, or kidneys. Agar’s doctor prescribed Benlysta, the only treatment on the market specifically for lupus.

But Agar says that, although she works hard and makes decent money, she isn’t able to afford Benlysta. Agar’s insurance policy pays for 80 percent of the drug’s price, or about $2,500 per dose. But Benlysta is so expensive that Agar would still have to pay $450 once or twice a month for the medicine – on top of a $770 monthly insurance premium and her other medical costs.

“I make too much money to qualify for assistance, but I don’t make enough to pay the bills,” she says.

Around the U.S., people with serious diseases like Agar’s are falling through the cracks, unable to afford the medication they need even if they have good jobs and good insurance. Patients with HIV, cancer, lupus, leukemia, hepatitis C and other serious conditions are paying huge out-of-pocket sums for necessary medication. These costs are putting heavy mental and financial stress on some of America’s most vulnerable people.

And the trend is getting worse. According to Truveris, a drug pricing research firm, the combined prices for brand, generic and specialty drugs rose 10.9 percent in 2014 compared with the previous year.

These rising prices are forcing some patients to take on huge amounts of debt. Others, like Kristin Agar, are forgoing medications altogether – increasing the risk that they will have more serious health complications down the road.

The reasons for these trends are complex: Drug companies blame insurers, insurers blame drug companies, and researchers blame both, as well as government regulations. But the implications are clear. Patients who can’t get medications will get sicker, and when they do, families, insurance companies and the government will bear the cost.

The Supreme Court ruled on June 25 that the federal subsidies that help people purchase Affordable Care Act health plans are legal, ensuring that the system will survive for now, and that patients with pre-existing conditions can continue to get insurance. However, patient advocates say that much work still needs to be done to make certain that patients can afford the treatment they need.

Americans of all parties now see the cost of drugs as a top concern, even more important than political aspects of the Affordable Care Act. In a poll by the Kaiser Family Foundation earlier this year, 76 percent of the public said the top priority for the president and Congress was making sure that those who need high-cost drugs for chronic conditions, such as HIV, hepatitis, mental illness and cancer, can afford them.

There is no quick fix for these problems. Meanwhile, the American population is aging, and many more expensive drugs are coming on the market. The problem is likely to get much worse before it gets better.

“It’s ironic: We’ve had fairly stable health care costs for a number of years, which is a truly historic achievement. We’ve saved billions and billions of dollars,” says John Rother, the president and CEO of the National Coalition on Health Care, which advocates for sustainable drug prices. “And now it looks like this one sector, pharma, is going to drive healthcare costs much more aggressively upward in the future.”

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