Doctors prescribed a variety of creams, lotions, and shampoos for her to use on her scalp for years after that. She even tried phototherapy at the doctor’s office, which involves exposing your skin to special ultraviolet (UV) lights. But nothing seemed to help much, and her psoriasis worsened.
Even though her symptoms were initially limited to her scalp, they began to interfere with her daily life. It wasn’t just the embarrassment of the flakes; it was also the itchiness. It could become so intense that it was difficult to think about anything else, let alone work or socialise.
“The constant desire to scratch can be exhausting,” she admits. Scratching, on the other hand, aggravated the situation. Every doctor she’s seen, according to Williams, has told her one thing: “Don’t scratch.”
“The next person who tells me that is going to get a swift kick to the shin,” she says.
Relief, Finally, and a Question
In 2008, she switched to a dermatologist, who gave her her first biologic medication, Enbrel. It was an epiphany.
“After so many years of intense itching – not to mention self-consciously and constantly brushing flakes off my shoulders and office chair – it was literally life-changing for me.” Williams was overjoyed. Why hadn’t she been offered one of these biologic medications years ago, she wondered?
What Are Biologics?
Biologics are drugs that target specific parts of the immune system. When used to treat psoriasis, they inhibit the actions of specific cells and proteins that are involved in the disease’s development.
Biologic therapy is administered either intravenously or as a shot. You may be able to give yourself the shots at home with some of the medications.
The Issue of Safety
“It was different in the early years of biologics,” says Mary Spraker, MD, a clinical dermatologist and associate professor of medicine at Emory University, of why these drugs weren’t widely available at first.
Doctors and pharmaceutical companies were unsure how safe and effective the medications were, so they were wary of prescribing them too liberally, she claims.
In fact, biologics for psoriasis were only approved by the FDA in 2004. In 2008, it added a “black box” warning to some of the medications about the possibility of tuberculosis and hepatitis B reactivation.
“These are serious medications, and we still don’t know everything about the long-term effects,” Spraker says.
However, with more research and newer biologics that may be safer, doctors may feel more comfortable recommending these drugs to people with a milder form of the disease in the future.
That is why, even if your doctor has not previously recommended them, you should continue to inquire about whether a biologic would be a good option, especially if your symptoms are worsening.
The Cost Factor
Biologic therapy is prohibitively expensive. According to a recent study, a three-year biologic treatment programme can cost more than $180,000.
Williams’ out-of-pocket expenses were relatively low when she first started using it, thanks in part to copay assistance from the pharmaceutical company. It didn’t hurt that she worked for a large corporation and had excellent insurance.
Because of the high cost of this therapy, insurance companies, including Medicare, usually have stringent requirements. Even if you meet the requirements, your copayments can run into the thousands of dollars.
The pharmaceutical industry is well aware of this. Many programmes exist to reduce the cost of the copay. Some programmes are for people who have almost no money (indigent), but others are for people like Williams, who simply cannot afford the large copays required by some of these drugs, even with good private insurance.
Williams was fortunate enough to be eligible for one of these programmes, which made her copay extremely affordable. So, if you’re on biologics, it’s a good idea to check with the drugmaker about a payment assistance programme.
The Insurance Gantlet
Williams’ drug effects began to fade after a few years, as is common with biologic medications. The flakes and itching began to return, as if in a bad dream.
“We don’t really know why these medications sometimes become 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 is exactly what occurred in 2016 for Williams. Her doctor switched her to Stelara, another biologic. Again, relief came quickly, and the cost to her was minimal thanks to copay assistance from the drug company.
Then, in 2018, something unexpected happened. Williams was approaching retirement age and needed to return to her native England to care for her ailing mother.
She quickly discovered that obtaining biologics in the United Kingdom was much more difficult. “To qualify for a biological, I literally had to be a fully walking flake on legs, which I wasn’t at the time.”
She was able to keep her psoriasis symptoms under control with topical medications from the United Kingdom’s National Health Service. It helped, she says, that she spent most of her time at home with her mother and didn’t have to go to an office or even go out in public very often.
However, when she returned to the United States in October 2020, she attempted to see a dermatologist who could put her back on biologics right away. Meanwhile, her psoriasis began to flare up badly. This time it wasn’t just her scalp. It ran down her neck, back, and legs. And it was harsh.
“By the time I got to the doctor, it was the worst it’d ever been in my life.”
Stelara, the biologic that had worked so well for her in 2016, was immediately prescribed by her new doctor. However, Williams did not have insurance through her job this time. She was a retiree on Medicare.
The issue wasn’t one of authorization; Medicare eventually approved her for biologic medication. The problem was that she was ineligible for the copay assistance programmes that would have made the medication more affordable.
Even with prescription drug coverage, she would have to pay $5,600 out of pocket for the first couple of months of treatment on Medicare, with a copay of about $2,800 per shot.
Although this appears to be a significant sum, it is only a fraction of the cost of the drugs. It was still more than Williams could afford. She didn’t have much in retirement savings, and she didn’t want to use them to pay for medication she’d need for the rest of her life.
However, in order to reapply for copay assistance, she needed to have private insurance. And she needed to get a job in order to get affordable private insurance. So that’s exactly what she did.
“It was a 25-hour-per-week job that I didn’t want to do. I mean, I’m supposed to be retired, after all. But, to me, that was a better option than depleting my savings.”
All of this took time, and she didn’t get her first dose of Stelara until April. Her copay was only $5.
A Never-Ending Journey
Unfortunately, the new Stelara dose did not work for Williams. She estimates that she still has psoriasis on about 75% of her body. Her doctor believes she will need to try a different biologic medication.
Williams and her doctor must now go through the gantlet once more to ensure that she is eligible to switch medications through her new insurance provider.
She describes it as a never-ending journey.
Each insurance company has its own set of rules for changing medications.
According to Emory’s Spraker, the problem extends beyond biologics and psoriasis.
“Everyone is perplexed by health insurance.”
“Even if you get insurance through your employer, the fine print changes every year. It’s difficult to predict what will 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 doctor may also be able to assist you. Emory Healthcare recently hired a full-time pharmacist whose sole responsibility is to assist patients in navigating the quagmire of insurance approval for costly medications. The same is true at Spraker’s other two hospitals.
You can also ask your pharmacist or insurance provider for help, or look for resources online. They can’t always do everything for you, but they can usually give you some useful advice and help.
“Most of the time,” says Spraker, “we can figure out a way.”