In the early 2000s, Caroline Williams began to notice tiny flakes of white 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 him with psoriasis.
For years, doctors have prescribed a number of creams, lotions and shampoos for her to apply to her scalp. She even tried light therapy, which is when you expose your skin to special ultraviolet (UV) light in the doctor’s office. But nothing seemed to help her much, and her psoriasis continued to get worse.
Even though it was limited to her scalp until now, her symptoms have started to encroach 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 of anything else, let alone work or socialize.
“The constant desire to scratch can be overwhelming,” she says. But of course scratching only made it worse. All of the doctors she’s seen, Williams says, are clear on one thing: “Don’t scratch yourself. ”
“The next one who tells me he’ll get a quick kick to the shin,” she said.
Relief, finally, and a question
Then, in 2008, she switched to a dermatologist who prescribed her first biologic: Enbrel. It was a revelation.
“It literally changed my life after so many years of intense itching – not to mention the constant and conscious removal of flakes from my shoulders and my office chair.” Williams was delighted. Why, she wondered, hadn’t she been offered one of those biologics years earlier?
What are organic products?
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 disease development process.
You are receiving biological therapy intravenously or by injection. With certain medications, you may be able to give yourself injections at home.
The question of security
As to why these drugs weren’t widely available early on, “It was different in the early years from biologics,” says Mary Spraker, MD, clinical dermatologist and associate professor of medicine at Emory University.
Doctors and drug companies weren’t yet sure how safe and effective the drugs were, so they were more wary of 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 drugs regarding possible reactivation of tuberculosis and hepatitis B.
“These are serious drugs, and we still don’t know all the possible long-term effects,” says Spraker.
But over time, with more research and new biologics that may be safer, doctors might start to feel more comfortable recommending these drugs for people with milder form of the disease.
That’s why, even if your doctor hasn’t recommended it to you in the past, you can keep asking if a biologic would be a good option, especially if you notice your symptoms getting worse.
The cost factor
Biological therapy is very expensive. A recent study found that a 3-year biologic treatment program can cost over $ 180,000.
When Williams started with this, his out-of-pocket expenses were relatively low, in part due to financial support from the drug company. It probably didn’t hurt that she had excellent self-assurance at the large company where she worked.
Due to the high cost of this therapy, insurers, including Medicare, usually have strict requirements. Even when you meet them, your co-payments can run into the thousands of dollars.
Pharmaceutical companies are aware of this. Many have programs to reduce the cost of copayments. Some programs are for people who have little money (needy), but others are for people like Williams, who just can’t afford the huge copay that some of these people have. drugs require even with good private insurance.
Williams was fortunate enough to qualify for one of these programs, which allowed him to pay a very affordable co-payment. So if you are taking biologics, it is a good idea to check with the drug manufacturer for a program that could help you pay.
The Insurance Gauntlet
After a few years, as can happen with biologic drugs, the effects of the drug began to wear off for Williams. Like a bad dream, the incessant flakes and itching started to return.
“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 this starts to happen because there are a number of things we can do. different things. to resolve the issue, including changing the type of biologic drug.
This is exactly what happened to Williams in 2016. Her doctor switched her to another biologic: Stelara. Again, relief came quickly, and with the help of the drug company’s copayment, the cost to her was minimal.
Then in 2018, something changed. Williams was approaching retirement age and she needed to return to her home country of England to care for her ailing mother.
She soon discovered that it was much more difficult to get organic products in the UK. “I literally would have had to be a flake walker to qualify for a biological exam – which I wasn’t then. “
She has been able to control her psoriasis symptoms somewhat with topical medication from the UK’s National Health Service. It helped, she says, that she was mostly at home with her mom and didn’t have much need to go to an office or even go out in public.
But after returning to the United States in October 2020, she tried seeing a dermatologist who could immediately put her back on biologic treatment. During this time, her psoriasis started to get badly worse. It wasn’t just his scalp this time. It was also along her neck, back and legs. And it was severe.
“By the time I went to see the doctor it was worse than ever in my life.”
Her new doctor immediately prescribed Stelara, the biologic that had worked so well in 2016. But this time around, Williams had no insurance at work. She was retired and on Medicare.
The problem wasn’t the approval – Medicare ultimately approved it for biologic drugs. The problem was Medicare disqualified her from copay assistance programs that made the drug affordable.
On Medicare, even with prescription drug coverage, she would have out of pocket only $ 5,600 for the first two months of treatment, with a co-payment of about $ 2,800 per injection.
Although this sounds like a lot, it is only a tiny fraction of the cost of drugs. Still, it was more than Williams could afford. She didn’t have as much retirement savings, and she didn’t want to dip into it to pay for the medications she would need her whole life.
But to requalify for the quota, she needed private insurance. And to get affordable private insurance, she had to find a job. So that’s exactly 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 for me it was a better alternative than having to use up my savings.
It all took a while, and it was in April that she received her first dose of Stelara. Her co-payment was $ 5.
An endless journey
Sadly, Stelara’s new dose didn’t work for Williams. She estimates that she still suffers from psoriasis on about 75% of her body. Her doctor says she will probably have to try another biologic.
Now Williams and her doctor must navigate the gauntlet again to ensure she is eligible to switch medication through her new insurance provider.
It sounds like, she says, a never-ending journey.
Each insurance company has different rules for changing drugs.
The problem is bigger than biologics and psoriasis, says Emory’s Spraker.
“Everyone is confused about Medicare. “
“Even through your employer, every year when you buy insurance, the fine print is different. It’s really hard to figure out what’s going to happen until you get the bill and then you have to make some phone calls.
Still, there are resources to help you get the treatment you need for your psoriasis. Organizations like the National Psoriasis Foundation can guide you to the right place.
Your health care provider can also help. Emory Healthcare recently hired a full-time pharmacist whose only job is to help patients navigate the glove of approving expensive drug insurance. The same goes for the other two hospitals where Spraker works.
You can also ask your pharmacist or insurer or search for resources online. They usually can’t do everything for you, but they can usually give you helpful advice and help.
“Most of the time,” says Spraker, “we can find a way. “
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