In the early 2000s, Caroline Williams noticed tiny flakes of white skin on the shoulders of her clothes. “Dandruff,” she thought, trying to treat it with over-the-counter products. But it got worse, and in 2004 she went to a doctor who diagnosed psoriasis.
For years, doctors prescribed any number of creams, lotions, and shampoos to apply to her scalp. She even tried phototherapy, which involves exposing your skin to special ultraviolet (UV) lights in the doctor’s office. But nothing seemed to help much, and her psoriasis continued to worsen.
Although it was previously limited to her scalp, her symptoms began to invade her life. It wasn’t just the embarrassment of the constant dandruff – it was the itchiness. It could get so intense that it was almost impossible to think of anything else, let alone work or socialize.
“The constant need to scratch can be overwhelming,” she says. But of course the scratching only made it worse. Every doctor she’s been to, Williams says, one thing is clear: “Don’t scratch.”
“The next one who tells me he’ll get a quick kick in the shin,” she says.
Relief, finally, and a question
In 2008 she then switched to a dermatologist who prescribed her first biological drug: Enbrel. It was a revelation.
“It was literally life-changing for me after so many years of intense itching – not to mention confidently and constantly wiping flakes off my shoulders and office chair.” Williams was delighted. Why, she wondered, hadn’t she been offered one of these biological drugs years ago?
What are biologics?
Biologics are specialized drugs that target specific parts of the immune system. When used to treat psoriasis, they block the action of certain cells and proteins that are part of the process of developing the disease.
You will receive biological therapy either through an IV or as an injection. For some medications, you can self-administer the injections at home.
The subject of security
Why these drugs weren’t widely used in the beginning: “It was different in the early years of biologics,” says Mary Spraker, MD, clinical dermatologist and associate professor of medicine at Emory University.
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Doctors and drug companies were still unsure of how safe and effective the drugs were, so they were more cautious about prescribing them too simply, she says.
In fact, it wasn’t until 2004 that the FDA approved biologics for psoriasis. In 2008, it added a “black box” warning of a possible reactivation of tuberculosis and hepatitis B to some drugs.
“These are serious drugs and we don’t yet know all the possible long-term consequences,” says Spraker.
But over time, with more research and newer biologics that might be safer, doctors might feel more comfortable recommending these drugs for people with a milder form of the disease.
Because of this, even if your doctor hasn’t recommended them in the past, you can still ask if a biologic would be a good option, especially if you notice your symptoms are getting worse.
The cost factor
Biological therapy is very expensive. A recent study found that a 3-year biological treatment program can cost more than $ 180,000.
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When Williams started doing this, their expenses were relatively modest, in part because of the drug company’s co-payment support. It probably didn’t hurt that she had excellent insurance with the big company she worked for.
Because of the high cost of this therapy, insurance providers, including Medicare, usually have strict requirements. Even if you meet them, your co-payments can be thousands of dollars.
The pharmaceutical companies are aware of this. Many have programs to reduce copay costs. Some programs are for people who are almost out of money (destitute), others are for people like Williams who just cannot afford the high deductibles that some of these drugs require, even with good private insurance.
Williams was fortunate enough to qualify for one of these programs, which made their co-payment very affordable. So if you are taking biologics, it is a good idea to check with the drug manufacturer for a program that could help with the payment.
The insurance gantlet
After a few years, as can happen with biological drugs, the effects of the drug on Williams began to fade. As in a bad dream, the dandruff and the incessant itching returned.
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“We don’t really know all the reasons why these drugs sometimes become less effective over time,” says Spraker, “but it’s important to talk to your doctor when it starts because there are a number of different things we do can fix the problem, including changing the type of biological drug. “
This is exactly what happened to Williams in 2016. Her doctor switched her to another biologic: Stelara. Here, too, the relief came quickly and with the help of the pharmaceutical company’s additional payment, the costs were low for her.
Something changed in 2018. Williams was nearing retirement age and she had to return to her native England to care for her ailing mother.
She soon found out that it was much harder to get biologics in the UK. “I literally had to have a full fledged flake on my feet to qualify for biological training – which I wasn’t at the time.”
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She managed to keep her psoriasis symptoms at bay with topical drugs from the UK’s National Health Service. It helped, she says, that she was mostly at home with her mother and didn’t have to go to the office or even in public a lot.
But after she returned to the United States in October 2020, she tried to see a dermatologist who was able to put her back on biologics immediately. In the meantime, her psoriasis began to flare up badly. This time it wasn’t just her scalp. It was also down her neck, back, and legs. And it was strict.
“When I went to the doctor, it was worse than ever in my life.”
Her new doctor immediately prescribed Stelara, the biologic that worked so well in 2016. But this time, Williams wasn’t insured by her job. She was retired and on Medicare.
The problem wasn’t approvals – Medicare eventually approved them for biological drugs. The problem was Medicare disqualified them from the copay assistance programs that made the drug affordable.
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With Medicare, even with prescription drug coverage, she’d only have $ 5,600 out of her pocket for the first few months of treatment, with a co-payment of about $ 2,800 per shot.
That sounds like a lot, but it is only a tiny fraction of the cost of the drugs. Still, it was more than Williams could afford. She didn’t have that much retirement savings, and she didn’t want to have access to it to pay for medication that she would need for the rest of her life.
But to qualify for co-payment assistance again, she needed private insurance. And to get affordable private insurance, she had to find a job. So that’s what she did.
“It was 25 hours a week that I didn’t want to do. I mean, I’m supposed to be retired. But that was the better alternative for me than having to use up my savings. “
All of this took time, and it was April before she got her first dose of Stelara. Their co-payment was $ 5.
An endless journey
Unfortunately, the new dose of Stelara didn’t work for Williams. She estimates that she still suffers from psoriasis over 75% of her body. Her doctor says she’ll likely need to try another biological drug.
Now Williams and her doctor will have to navigate the gantlet again to make sure she can switch medications through her new health insurance plan.
It feels, she says, like a never-ending journey.
Every health insurance company has its own rules for changing medication.
The problem is bigger than just biologics and psoriasis, says Emory’s Spraker.
“Everyone is confused about health insurance.”
“Every year, when you take out insurance, there is a different small print about your employer. It’s really hard to understand what’s going to happen until you get the bill and then you have to make a phone call. “
Still, there are resources out there to help you get the treatment you need for your psoriasis. Organizations like the National Psoriasis Foundation can help you find the right place.
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Your doctor can help too. Emory Healthcare recently hired a full-time pharmacist whose sole job is to help patients journey through health insurance approval for expensive drugs. It’s the same in the other two hospitals where Spraker works.
You can also ask your pharmacist or insurance company, or search for resources online. They usually can’t do everything for you, but they can usually provide useful help and guidance.
“Most of the time,” says Spraker, “we can find a way.”
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