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.)
Its a good thing that there's a new drug that can help some of us lupus patients but as a person of african heritage, it saddens me that not enough studies were done to ensure it worked on all people.
ReplyDeleteThe cost of the drug seems prohibitive for most people - regardless of their race
This information was a revelation to me! How crazy that the drug wasn't tested on those who really need it most. I guess we can only hope that if Benlysta does prove beneficial for the minority of patients, it's application will be extended. But haven't we all waited long enough as it is?
ReplyDeleteBut are you really white. I tested my DNA before diagnosed with lupus because I am a genealogy fanatic. I am creole but my skin is very white. My father was white and Indian my mom was French mix with African American. , I said all this to say there might be gene u don't know about. No one in family ever said so and so was an Indian or so and so was an American American, so really how many of us so called white girls don't have genes that could account for us getting lupus?
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