“To the person I have never met.” That’s how Steve Way, Rutherford New Jersey native and co-star of the hit Hulu show Ramy, began a pleading letter to his health insurance company, appealing a decision that denied him assistance he says he needs to survive.
Way, 28, has a rare form of muscular dystrophy, uses a wheelchair, and needs around-the-clock assistance. He said he’s been embroiled in a year-and-a-half-long battle with his insurance company, Horizon NJ Health, to maintain the necessary number of hours of in-home medical care that he requires. In the letter, he said the hours spent alone and unsupervised in his apartment could mean death for him.
Way is trying to obtain 84 hours of weekly assistance under Medicaid’s Personal Care Assistance program. Though he was approved for 60 hours, he said the 24-hour gap would leave him unsupervised and without assistance for several hours during the day before his girlfriend returns home from her job.
“Why is it that someone without my condition has the authority to decide how much care I need and receive?” he asked. “I am done jumping through hoops and constantly being denied the bare minimum care that I need just to survive.”
The New Jersey Department of Human Services, under which the assistance program is run, did not respond to an email seeking comment on Way’s situation. A spokesman for Horizon Blue Cross Blue Shield of New Jersey said that because Medicaid is run by the state, the insurance company merely serves in an administrative role for the state, which he said determines care like hours of assistance.
He added, “I’ll still be alone. I’ll still go without going to the bathroom or eating. There will be times where I’ll need suction or I might choke,” he said, referring to the ventilator he requires day and night due to difficulties swallowing.
“I know, personally, multiple people who have died over the past months because their insurance denied them the things they need,” Way added. “And I very well might be that person now.”
In the meantime, he wants others to know that they have a resource to turn to — him.
“For anyone that is going through what I’m going through or you know in the future you’re going to have to do that, reach out to me,” he said. “Because I will tell you exactly what I did. The things that I sent. And I will do everything that I can to make sure your basic needs are met too. Because we are all in this together.”