Getting By With Psoriatic Arthritis Until You Get Insurance

Michael Bentley is an avid fisherman and amateur radio operator from Corsicana, a little town 60 miles south of Dallas that’s best known for its locally made fruitcakes. Bentley talks to people from all over the world, but his most significant call was to the Patient Navigation Center, which offers people with psoriasis and psoriatic arthritis (PsA) free, personalized guidance on their journey to improved health.

Bentley, 47, estimates that during his teen years, psoriasis covered 70 to 80 percent of his body. “It took a while to find the right drug,” he says, with a classic Texas twang in his voice. “My doctors gave me creams and hydrocortisone shots. That was in the ’80s and ’90s.”

Over the years, he’s received more than his fair share of “well-meaning but unsolicited advice,” he says. All you need is this cream. Oh, it’s just a skin condition. Oh, it’s contagious, get away from me!

Bentley is currently unemployed and living with his stepmom. His last job was at a plastics factory, where he drove a forklift and worked in the grinding shop. “Now I hurt too much, especially in my hands,” he says. “I can’t open a simple bottle of water or a Coke unless I have a pair of pliers, and sometimes not even then.” His pharmacy opens his pill bottles for him. Because of the constant pain, “my most comfortable position is lying down,” he says.

On top of these everyday challenges, Bentley is being treated for a chronic kidney disease.

First the dermatologist

Bentley discovered NPF after reading issues of Psoriasis Advance in the office of Alan Menter, M.D. Menter, who has had a long association with NPF, is the chair of the Division of Dermatology and director of the Dermatology Residency Program at Baylor University Medical Center in Dallas.

Bentley says that Menter suspected he had rheumatoid or psoriatic arthritis and wanted him to see a rheumatologist to get a diagnosis and treatment. Bentley, who was uninsured at that time, had not been able to find a rheumatologist who would accept him as a patient. But because he had read Psoriasis Advance, he knew he could contact the Patient Navigation Center for assistance.

Every day, our patient navigators speak with patients like Bentley – with and without health insurance – who need support managing their disease. “We want everyone to walk away feeling like they are heard and they can come back to us whenever they want,” says one navigator.

Then the Rheumatologist

Bentley’s patient navigator learned that he was uninsured, that he didn’t qualify for subsidies when he applied for health insurance on healthcare.gov, and that he didn’t qualify for Medicaid, which had not been expanded in Texas. Despite these challenges, the navigator found a clinic for Bentley, Southwest Rheumatology Research, that accepted uninsured patients and was about an hour’s drive away in Mesquite, Texas.

The rheumatologist at Southwest charged the uninsured a minimal fee per visit. He diagnosed Bentley with PsA and prescribed a biologic. He also enrolled Bentley in a clinical trial for an oral drug that might also prove useful for the treatment of PsA.

Bentley’s patient navigator sent him a packet of information on applying for disability and encouraged him to speak to his health care providers about writing a letter for him to support his case. The navigator even sent a template to help Bentley’s providers craft their letters.

Finally, the Insurance

Bentley was approved for disability in March 2018. Two months later, he went on Social Security Disability Insurance. “I paid off a bunch of medical bills,” he says.

He also returned to Menter. “My skin’s looking better,” he says, “I don’t have the stingy, itchy skin anymore.”

Bentley remains hopeful. His psoriasis has improved, but he’s still in constant pain from his PsA, especially in winter. “My joints ain’t feeling better. I wish they were. I have a good day maybe one day out of the week – the day I get my injection. I move around and get stuff done that day.”

Many people with psoriatic disease would agree with Bentley when he says, “I wish I could go back to when I was 20! When I wasn’t broke out and I didn’t hurt.”

Bentley pursues his hobbies whenever he can. He holds an Extra Class Amateur Radio Operator license (the top license class awarded by the Federal Communications Commission). He’s reached fellow operators in every continent except Antarctica and Asia. If you’d like to try to raise Bentley, his call sign is KF5KHS. “We’re always open here in Corsicana,” he says.