In 2017, after 24 years on disability, HIV long-term survivor Michael Luciano, diagnosed with the virus in 1987, returned to work full-time at the HIV and AIDS services organization Palmetto Community Care in North Charleston, South Carolina. Today, he is the group’s linkage to care navigator and its peer services coordinator. In those roles, he helps newly diagnosed clients connect to care and longtime clients get back into care, oversees two full-time counselors and runs a biweekly support group.
“Having lived through the horrible days of no effective HIV treatment, I love being able to immediately reassure people who’ve just tested HIV positive that they can continue to thrive with accessible treatment and care,” Luciano says. “We’re in a different universe from when I tested positive.”
As for Luciano’s own treatment and care needs—he takes about 15 pills a day for HIV and other conditions—he’s covered by his workplace Blue Cross plan. Additionally, because he’s income-eligible, the federal Ryan White AIDS Drug Assistance Program (ADAP) covers his Blue Cross deductible, co-pays and other out-of-pocket expenses. In that, he’s like many people living with HIV in the United States whose health needs are covered by a combination of private plans and public/federal programs.
But then he hit a coverage snag. About a year and a half ago, Luciano had a frank conversation with his primary care provider about the fact that both his total cholesterol and his LDL (“bad”) cholesterol were way too high, even though he did his best with diet and exercise and was even on a statin, a common cholesterol-lowering drug. His provider referred him to a cardiologist, who suggested that he start taking a self-injectable drug that lowers cholesterol by a different mechanism than statins.
“She’d found the drug to be successful with a lot of her patients,” Luciano says. After considerable online research of his own, he decided to try it. There was just one problem: Under his work plan, the drug—whose sticker price is $600 a month compared with $10 to $50 a month for generic statins—had a monthly patient co-pay of $180. And South Carolina’s ADAP program didn’t cover it—it only covered statins.
“I knew this was going to be a problem,” he says.
But unbeknownst to him, his cardiologist asked a specialty pharmacy to handle the cost issue, and the pharmacy ended up telling Luciano that it had gone ahead and applied on his behalf for a “co-pay card” from the drug’s maker. The pharmaceutical company is just one of many drugmakers that offer a variety of patient assistance programs, coupons or cards to partly or fully cover co-pays or other patient cost sharing on usually expensive drugs that patients likely couldn’t access without such programs. It’s not an especially big hit for drugmakers, because insurance plans are still covering the lion’s share of costs on their drugs, and, of course, it makes it possible for more people to be on their drug—hence more sales.
Once the co-pay card was approved, Luciano wound up having to pay nothing. “They eliminated my co-pay completely, except for a $5 remainder, which they wrote off,” he says.
That was a year and a half ago, and the card is still covering Luciano’s co-pay. And that’s a good thing, he says, because the drug, which must be refrigerated, has cut both his overall cholesterol and his bad cholesterol in half. “My cardiologist would like to see the bad cholesterol drop a little further,” he says, “and if I ever manage not to work 60 hours a week, I’ll be able to pay more attention to my diet and exercise.” The only side effect of the drug, he says, is that it gives him a runny nose. The drugmaker acknowledges that a runny nose, as well as other common-cold-like symptoms, are typical side effects.
Overall, though, Luciano appreciates pharma’s helping hand. “I feel really fortunate that the co-pay card process was really well managed by my specialty pharmacy,” he says. “I don’t even have to present the card because they apply it internally.”
Luciano acknowledges that nailing down pharma assistance may not be quite as easy for everyone, but he urges everyone who needs it to seek it out. “Ask your pharmacist if they can help you with any co-pay you can’t meet, and, if not, go online and search for the manufacturer’s help,” he says. “If it’s a prescription that would benefit you more than some more easily covered drug or if it’s your only choice for a chance at better health, don’t give up!”
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