Some people say that white men can’t jump.
And some people say that white women can’t get lupus.
But tell that to all of my fellow bloggers who have lupus…and are white…
I evidenced this myself firsthand in attending a lupus support group – in a predominantly white area – where I was the only white girl in attendance.
So there. It’s no secret that lupus has higher incidence rates in African Americans, Latinas, and Asians.
So why all of this talk about race all of a sudden?
Because, unless you live under a rock, you’ve probably heard that Benlysta – the first drug to specifically treat lupus in over 50 years – was approved yesterday by the Food and Drug Administration.
According to the most recent New York Times article, “The drug is not recommended for patients whose disease is severely damaging their kidneys or central nervous systems because it was not tested on those patients. Moreover, African-Americans, who have a far higher incidence of lupus than white people, did not appear to respond to the drug.”
The approval of Benlysta could be a victory for us white girls with lupus. But it could also mean that those predominantly affected will not receive any benefit.
Will it be considered “off-label” for doctors to prescribe Benlysta to African Americans? Because the reality is, it hasn’t been approved for them.
Isn’t it disturbing to anyone else that the majority group who is most affected by this disease are the least likely to receive help from it? And is it really any surprise that a disease that affects primarily minority women has had such a difficult time gaining treatments?
Plus at a cost of $35,000 a year, I can’t imagine that patients are going to run in droves to their doctors, asking for this drug, especially considering that the findings from the trials have been relatively mixed.
I definitely think that this is a milestone to commemorate: the first drug for lupus in over 50 years. But, as always, I remain skeptical. No drug, no matter how good, is a miracle cure. There will always be side effects.
And it seems like, for a drug to treat lupus – that can’t treat African Americans, those with kidney involvement, and those with central nervous system involvement – who can it treat?
Oh yes, us run of the mill white girls, some of whose doctors don’t even believe they can actually have the disease.
(And please note the irony here: I’m probably one of few who would be able to take Benlysta. Also note that my position on Benlysta has always been the same.)