A son remembers -- and gives back
Elijah White, who lives in the Queens, N.Y., neighborhood of Arverne, is no stranger to lupus. The 25-year-old U.S. Postal Service worker and freelance photographer grew up watching his mom’s struggles with the disease that was initially misdiagnosed and incorrectly treated. White also saw the very worst that lupus can do, for it claimed his mother’s life in 2004.
His own battle began in 2007, when he was 16. After months of tests, a lupus diagnosis was made. He started taking corticosteroids and mycophenolate mofetil (CellCept®), and for nearly 10 years he had only mild flares. But on Thanksgiving weekend 2016, while in the hospital fighting a viral infection, a biopsy proved what his rheumatologist, Dr. Richard Furie, suspected: lupus nephritis was causing inflammation in White’s kidneys.
White’s symptoms were brought under control by increasing his CellCept dose to the maximum amount, increasing his regular corticosteroid dose, and undergoing two courses of intravenous high dose (“pulse”) corticosteroids. Still, he knew that the next option would be the powerful chemotherapy drug Cytoxan®, which he was determined to avoid. The potent medications to treat lupus kidney disease have several features in common: Neither CellCept nor Cytoxan are FDA-approved for lupus, although they are the mainstay of treatment for patients with severe forms of lupus nephritis. And they both can cause harmful short-and long-term side effects. These are two of the main reasons that developing new, safer medications is a high priority for lupus researchers.
Yet development of new medications is no easy task. Besides the millions of dollars and 12-15 years spent to develop a drug, the method of knowing how well the medication works in people can only be understood if volunteers will take part in the clinical trials. Dr. Furie asked White to consider it.
“He told me basically what a clinical trial is, and sent me an email with clinical trials of different medications that maybe I would like to apply for,” says White.
One of them was a two-year clinical trial of Benlysta® as a treatment for lupus kidney disease. Benlysta is the first medication developed specifically for lupus and was approved by the Food and Drug Administration (FDA) in 2011, but that approval did not include lupus nephritis.
White says that the decision to be in the study was not an easy one to make. “At first I was against it. I didn’t want to be an experiment. I didn’t want anybody to be prodding at me and trying different medications. I was tested a lot when I was first being diagnosed for lupus. And I’ve already had a lot of reactions to other medications so I definitely didn’t want to try anything new.”
His fiancee helped him look at the study as an opportunity—in more ways than one. “She talked to me about the benefits,” he says. “She said that it might help my lupus, and also it could help other people with lupus kidney disease. So I did more research and asked more questions. What really led me into doing the study was Dr. Furie’s research coordinator, Ferva Abidi, who has been really helpful by keeping in contact with me and giving me all of the information I ask for.”
White’s participation is of great value to lupus researchers for several reasons. First, because he is African American: lupus affects people of color two to three times more often than Caucasian, yet there is a notable lack of participation by minorities in clinical trials. Because of this, it is unclear how effective Benlysta and other new medications can be for people of color
Second, because of his gender: lupus develops in females nine times more often than in males, making males under-represented in lupus research studies. Without having men in clinical trials, researchers cannot make progress on understanding why lupus often affects males more severely.
Although White continues to receive his current (standard-of-care) treatment (CellCept) during the study, neither he nor the research staff know who is receiving Benlysta and who is receiving the placebo (an inactive substance with no clinical effects). But that has not deterred him.
Nor has the time commitment. In fact, because he works nights at the postal facility in Brooklyn, he goes straight to the treatment clinic from work—for the majority of the study, he goes once a month. “They put you in a nice little sectional area, with a couch where you can stretch out. Everything is explained as far as what’s going to be done, questions are asked just to make sure mentally you’re in the right place as well,” he says. “I don’t feel like I’m being tested or like I’m in an experiment. I go in for the treatment, fall asleep, and by the time I wake up everything’s almost over.”
White acknowledges that the support he’s received from his family has also been of great help. “If not for them I’d probably mentally not be in the right space for this—I’d probably have a negative attitude towards it just because of the letdowns that I’ve had so far with lupus,” he says.
But there’s one much more powerful reason that Elijah White is taking part in a lupus medication study. It isn’t one that he readily shares, but it’s always on his mind. “I honestly think that, had there been more research back then, and had they actually known what it was back then, you know, it may have saved my mom, and she might be alive today.”