In the early 2000s, Caroline Williams started to notice tiny white flakes of skin on the shoulders of her clothes. “Dandruff,” she thought, and tried to treat it with over-the-counter remedies. But it got worse, and in 2004, she went to a doctor, who diagnosed psoriasis.
For years afterward, doctors prescribed any number of creams, lotions, and shampoos for her to apply to her scalp. She even tried phototherapy, which is when you expose your skin to special ultraviolet (UV) lights at the doctor’s office. But nothing seemed to help much, and her psoriasis continued to worsen.
Even though it was so far limited to her scalp, her symptoms started to intrude on her life. It wasn’t just the embarrassment of the constant flakes — it was the itchiness. It could get so intense that it became almost impossible to think about anything else, much less to work or socialize.
“The constant desire to scratch can be overwhelming,” she says. But of course, scratching just made it worse. Every doctor she’s been to, says Williams, is clear on one thing: “Don’t scratch.”
“The next one that tells me that will get a swift kick to the shin,” she says
In 2008, Williams switched to a dermatologist who prescribed her first biologic medication: Enbrel. It was a revelation.
“It was literally life-changing for me after so many years of intense itching — not to mention self-consciously and constantly brushing flakes off my shoulders and office chair.” Williams was elated. Why, she wondered, hadn’t she been offered one of these biologic medications years earlier?
Biologics are specialized drugs that target specific parts of the immune system. When used to treat psoriasis, they block the actions of certain cells and proteins that are part of the process of developing the disease.
You get biologic therapy either through an IV or as a shot. With some of the medications, you may be able to give yourself the shots at home.
As to why these drugs weren’t widely offered at first, “It was different in the early years of biologics,” says Mary Spraker, MD, a clinical dermatologist and associate professor of medicine at Emory University.
Doctors and pharmaceutical companies weren’t yet sure how safe and effective the medications were, so they were more wary about prescribing them too easily, she says.
In fact, the FDA only approved biologics for psoriasis in 2004. In 2008, it added a “black box” warning to some of the medications about possible reactivation of tuberculosis and hepatitis B.
“These are serious medications, and we still don’t know all of the possible long-term effects,” Spraker says.
But over time, with more research and newer biologics that may be safer, doctors could start to feel more comfortable recommending these drugs for people with a milder form of the disease.
That’s why, even if your doctor hasn’t recommended them in the past, you can continue to ask about whether a biologic would be a good option, especially if you notice your symptoms getting worse.
Biologic therapy is very expensive. A recent study found a 3-year biologic treatment program can run to more than $180,000.
When Williams first started with it, her out-of-pocket expenses were relatively low, in part because of copay assistance from the pharmaceutical company. It probably didn’t hurt that she had excellent insurance at the large company where she worked.
Because of the high cost of this therapy, insurance providers, including Medicare, typically have strict requirements. Even when you meet them, your copayments can be in the thousands of dollars.
Drug companies are aware of this. Many have programs to lessen the cost of the copay. Some programs are for people who have almost no money at all (indigent), but others cater to people like Williams, who simply can’t afford the huge copay that some of these drugs require, even with good private insurance.
Williams was lucky enough to qualify for one of these programs, which made her copay very affordable. So if you’re on biologics, it’s a good idea to check with the drugmaker for a program that could help with payment.
After a few years, as can happen with biologic medications, the drug’s effects started to fade for Williams. Like a bad dream, the flakes and the relentless itching began to return.
“We don’t really know all the reasons why these medications sometimes grow less effective over time,” Spraker says, “but it’s important to talk to your doctor when it starts to happen, because there are a number of different things we can do to fix the problem, including switching the type of biologic medication.”
That’s exactly what happened to Williams in 2016. Her doctor switched her to another biologic: Stelara. Again, relief came quickly and, with the help of copay assistance from the drug company, the cost to her was nominal.
Then in 2018, something changed. Williams was closing in on retirement age, and she needed to move back to her home country of England to tend to her ailing mother.
She soon found out that getting biologics in the U.K. was a lot more difficult. “I literally would have to have been a fully walking flake on legs to qualify for a biological — which I wasn’t at the time.”
She managed to keep her psoriasis symptoms somewhat in check with topical medications from the U.K.’s National Health Service. It helped, she says, that she was mostly home with her mother and didn’t need to go to an office or even out in public much.
But after she moved back to the United States in October of 2020, she tried to get in to see a dermatologist who could put her back on biologics right away. In the meantime, her psoriasis started to flare badly. It wasn’t just her scalp this time. It was down her neck, back, and legs as well. And it was severe.
“By the time I went to see the doctor, it was worse than it’s ever been in my life.”
Her new doctor immediately prescribed Stelara, the biologic that had worked so well in 2016. But this time around, Williams didn’t have insurance through her job. She was retired and on Medicare.
The problem wasn’t approval — Medicare eventually approved her for biologic medication. The problem was that Medicare disqualified her from the copay assistance programs that made the medication affordable.
On Medicare, even with prescription drug coverage, she would be out of pocket $5,600 just for the first couple of months of treatment, with a copay of about $2,800 per shot.
Although that sounds like a lot, it’s only a tiny fraction of the cost of the drugs. Still, it was more than Williams could afford. She didn’t have that much in retirement savings, and she didn’t want to dip into them to pay for medication that she’ll need for life.
But to requalify for the copay assistance, she needed private insurance. And to get affordable private insurance, she needed to get a job. So that’s just what she did.
“It was 25 hours a week, which I didn’t want to do. I mean, I’m supposed to be retired. But that to me was a better alternative than having to use up my savings.”
All this took time, and it was April before she got her first dose of Stelara. Her copay was $5.
Sadly, the new dose of Stelara has not worked for Williams. She estimates she still has psoriasis over about 75% of her body. Her doctor says she will likely need to try a different biologic drug.
Now, Williams and her doctor have to navigate the gantlet again in order to make sure she qualifies to switch medications through her new insurance provider.
It feels, she says, like a never-ending journey.
Each insurance company has separate rules for switching medications.
The problem is bigger than just biologics and psoriasis, says Emory’s Spraker.
“Everyone’s befuddled about health insurance.”
“Even through your employer, every year when you sign up for insurance, there’s different fine print. It really is hard to understand what’s going to happen until you get the bill, and then you have to make phone calls.”
Still, there are resources to help you get the treatment you need for your psoriasis. Organizations like the National Psoriasis Foundation can help guide you to the right place.
Your health care provider can help, too. Emory Healthcare recently hired a full-time pharmacist whose sole job is to help patients navigate the gantlet of insurance approval for expensive medications. It’s the same at the other two hospitals where Spraker works.
You can also ask your pharmacist or your insurance provider or look online for resources. They can’t typically do it all for you, but they can usually give you some useful help and guidance.
“Most of the time,” says Spraker, “we can figure out a way.”