CHESAPEAKE, Va. (WAVY) — William Ross’ condition is not getting any better, but he’s trying to slow down the process of getting worse.
Ross, 80, has lupus, the auto-immune disease in which the body’s immune system turns on healthy tissue. Fewer than 1% of Americans have lupus, but for Ross, that doesn’t really matter.
The FDA approved the drug Saphnelo in 2021. An Army veteran from the Vietnam era, Ross is facing a roadblock trying to get the drug from the Department of Veterans Affairs.
The Lupus Foundation of America said Saphnelo has shown promise in trials, but also warned of possible side effects that are characteristic of treatments for the immune system.
“I am running out of time,” Ross said in a Thursday morning interview. He needs a walker to get around his Chesapeake home, but soon, even that won’t help.
“I won’t be able to walk,” Ross said. “Pretty soon, I won’t be able to take care of myself and I won’t be able to drive.”
His feet show the inflammation and skin lesions associated with lupus. Ross has the lesions on his upper body as well.
A native of Norfolk, Ross served in Vietnam and Korea during the 1960s. The lupus started about 55 years ago, went into remission, then returned about 10 years ago.
“I’ve had flareups since then, in between, but now the flareup won’t go away,” Ross said.
Saphnelo gives Ross some hope — not for a cure, just as a way to slow down the pain, fatigue and inflammation. “So I asked the VA for that, and I can’t get that.”
Ross said the VA won’t consider Saphnelo because they claim he’s not taking what he’s being prescribed right now. He said he hasn’t missed a day of taking them.
“They won’t listen to me,” Ross said. “They act like I don’t know what I’m talking about. I feel like they deserted me, that I’ve been deserted, put out to pasture.”
The Hampton VA Medical Center responded with this statement Thursday afternoon:
“Our goal is to work collectively with Veterans to deliver the best health outcomes available,” the Hampton VA Medical Center said. “When prescribing medication, VA must follow VA Formulary Advisor guidelines. While we are unable to speak specifically to this Veteran’s medical concerns due to privacy, we will continue to work with him and assure him that we are providing the quality care he deserves.”
If Ross wanted to get Saphnelo on his own, it would cost an estimated $500 per monthly infusion. He said he worries that the VA is just trying to save money.
As he waits and hopes, Ross isn’t getting any better.
“I feel so weak like I’m about to check out again,” Ross said.
10 On Your Side has also connected Ross with the staff of Rep. Jen Kiggans (R-VA02) a fellow veteran and his representative on Capitol Hill.