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 free, personalized guidance on their journey to improved health.
Bentley 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. On top of these everyday challenges, Bentley is being treated for a chronic kidney disease.
Finding the right specialist
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 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 is uninsured, had not been able to find a rheumatologist who would accept him as a patient. He turned to NPF’s Patient Navigation Center for assistance. That’s when he met Patient Navigator Ashley Lindberg.
Every day, Lindberg speaks with patients like Bentley who need support managing their disease. “I want everyone to walk away feeling like they are heard and they can come back to us whenever they want,” she says.
Lindberg learned that in addition to being uninsured, Bentley did not qualify for subsidies when he applied for health insurance on healthcare.gov. Nor did he qualify for Medicaid, which has not been expanded in Texas. “I found a clinic for him in Mesquite, Texas, Southwest Rheumatology Research, that accepts uninsured patients,” she says.
His rheumatologist charges the uninsured a minimal fee per visit. He diagnosed Bentley with psoriatic arthritis and prescribed Stelara (ustekinumab) before enrolling Bentley in his current clinical trial for an oral drug that may prove useful for the treatment of psoriatic arthritis.
Lindberg also sent Bentley a packet of information on applying for disability and encouraged him to speak to his health care providers about writing a letter to support his case. She even sent a template to help his providers craft their letters. “Ashley has been wonderful!” Bentley says.
Bentley may be down, but he’s not out. If he gets on disability, Medicare will eventually pay for his prescriptions. He remains hopeful despite the constant joint pain. “My most comfortable position is lying down,” he says. [Editor's note: Bentley was approved for disability in March 2018.]
He also enthusiastically pursues his hobbies. He holds an Extra Class Amateur Radio Operator license (the top license class awarded by the Federal Communications Commission). He’s on the board of directors of his amateur radio club, and 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.
Get the treatment you deserve. Contact the Patient Navigation Center with your questions and concerns about treatments.
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.