Navigating a Difficult Journey

As her dermatologist went on to explain the treatment plan, she felt more frustrated. Bennett was told it could be a year before she could access the treatment that would likely improve her condition because insurance would require that she try and fail several other treatments first – a process referred to as step therapy.

“I started crying. I mean, what am I supposed to do?” she says.

It took her nearly a year to get a diagnosis, and then she was told it could be another year before she had a treatment that would really make a difference. So, she started with topicals, received phototherapy treatment, began oral systemic treatment, and then eventually switched to biologics. It was during that time that Bennett learned that some of the stiffness, aching, and pain that she experienced were due to PsA, and not from injuries from her car accident as she had previously thought. Treatments for the pustular psoriasis and PsA required frequent visits to a dermatologist – sometimes twice weekly – and a rheumatologist, whom she sees either monthly or every other month.

“Now remember, every time I do this [health care provider visit], I'm having to pay a copay. It's like $50 a copay just for the light therapy. It's twice a week. So that's $400 a month just for the light therapy,” says Bennett. “We're talking, at minimum, I was paying two-grand out of my pocket for co-pays. That’s not sustainable.”

Not only was she enduring ongoing symptoms related to psoriatic disease and the financial pressures of treatment, but the treatments themselves were often painful. She began receiving multiple injections directly into the palm of her hand and fingers and several injections into the soles of her feet and toes to reduce symptoms so that she could walk during a flare up. She also had to manage the side effects of her various treatments, which in her case included severe headaches and frequent vomiting, which she says significantly impacted her quality of life.

Now, Bennett manages her disease with the help of a dermatologist, rheumatologist, and an integrative medicine specialist. She is currently on a biologic treatment as well as an oral treatment. In addition, she focuses on complementary measures, such as a diet she describes as anti-inflammatory. She says that currently, flares still occur about once every two to three months.

It takes work to stay healthy, she says. Not only will stress potentially induce a flare, but so could another illness.  

“I have found that if I am not regimented with what I eat, with my medicine, with my exercise, and with my work, that my [symptoms] will get worse,” she says.

Bennett continues to practice yoga even when her range of motion is limited, and she is working on meditation and breath work to manage pain and stress.

At 49, she uses her experience to advocate on behalf of other people with psoriasis. Through her involvement with the National Psoriasis Foundation (NPF), she has shared her story with lawmakers. She hopes to inspire changes that would make it easier for others to access the treatments they need, faster. That way, others do not have to endure the same delays that she had experienced.

To others who find themselves on a similar journey, she says first, “don’t be ashamed to ask for help.” As soon as she requested information from NPF, she was connected with a Patient Navigator who provided her with resources and put her in touch with support groups. The NPF Patient Navigation Center can also help with finding health care providers and navigating access to treatments.

She also says, don’t forget about “whole person care.” Consider diet, environment, mental and physical health.

“You have to treat all parts of you,” says Bennett.