Dr Gilkeson discusses findings of his research into the prevalence of systemic lupus erythematosus and lupus nephritis among African-Americans, including members of the Gullah community on the sea islands of South Carolina and Georgia.
Gary Gilkeson, MD, is a rheumatologist and Distinguished University Professor of medicine/microbiology and immunology at the Medical University of South Carolina in Charleston, South Carolina.
TRANSCRIPT:
Rebecca Mashaw: Hello, and welcome to another podcast from Rheumatology Consultant. Today, we will hear from Dr Gary Gilkeson.
Dr Gilkeson: My name is Dr. Gary Gilkeson. I'm a Distinguished University Professor at the Medical University of South Carolina, in the Division of Rheumatology, doing research and clinical care and lupus.
RM: Thank you for joining us today.
Dr Gilkeson: Thank you for asking.
RM: Now you've been doing some very interesting research into lupus itself but also the complication of lupus nephritis and see what you found if anything along those lines as well.
Your research has been among in the Sea Island communities off of South Carolina and Georgia, and particularly the Gullah community. Is that correct?
Dr Gilkeson: Yes. We're focusing on African Americans as a whole, this is a unique group that added some components to the research.
RM: What led you to focus on the prevalence of lupus among African Americans?
Dr Gilkeson: That's just been an interest of mine because they have a higher prevalence of lupus than among Caucasians. They have a worse prognosis, higher mortality rate. Some of those answers seem to be a way of unlocking a lot of secrets about lupus. The other area that we're interested in is the female predominance of lupus as well, which is 10 to 1.
If we can understand why African Americans, why women have more lupus than men or Caucasians, then that will hopefully give us some basic clues as to what causes lupus and better ways of treating it.
RM: What have you found so far?
Dr Gilkeson: That's a good question. We had hoped that the prevalence in African Americans we believe to be a genetic environmental impact. The worsening of disease in them and the higher mortality rate, we think, has a lot of socioeconomic issues.
We think that has a lot to do with why they may not do as well as others. Lupus nephritis, specifically ‑‑ our group didn't discover this but was part of the study ‑‑ is there is an association with a gene called APO‑1A that leads to worsening outcomes in all types of kidney disease. It's an African‑derived gene that has to do with protecting against the specific infections in Africa.
But by having that, it also makes you more likely to progress to end‑stage renal disease if you have diabetes, or hypertension, or lupus as well. That's been one of the major discoveries as to why they have more kidney disease and why it's worse.
We had hoped to find in the genetic studies some insight into lupus in African Americans and then why it's more common, but the genetic studies in African Americans have not been as revealing as they have been in Caucasians, and Hispanics, and Asians.
RM: You found that there's a familial prevalence among the Gullah that it is twice as high for lupus as among other African American cohorts. What are you finding about this particular characteristic?
Dr Gilkeson: The Gullah population were brought here and kept in Charleston, put out on the Sea Islands from the 1600s through the Civil War. After the Civil War, when they were freed, they still stayed on the islands. There really weren't roads to the islands until the 1950s and '60s.
From the late 1600s to the mid‑1900s, they were pretty much isolated by themselves out on the island. That led to significant genetic homogeneity. That is the reason why we believe that the familial presence of lupus is higher because they're more related to each other than other populations.
RM: One of the things you mentioned earlier was that you haven't found a way to do an ethical search for lupus in Sierra Leone. What's blocking that? What's making that difficult for you?
Dr Gilkeson: We initially collected samples from young women in Sierra Leone for genetic studies, as well as looking for any of the autoantibodies that we see in lupus.
But we couldn't provide the medical care or medications, and so the one ethical point to never want to cross is looking for something that you can't do anything about. That was the rationale behind it. We talked it over with the ethics committee in Sierra Leone, and they agreed.
RM: Are you finding cases of lupus and lupus nephritis in Sierra Leone when you do go there? Do you have a sense of how prevalent this disease may be in that area as compared to among the Gullah community?
Dr Gilkeson: There's always been what was called the gradient hypothesis that lupus was common in African Americans but rare in Africa.
But there's a good number of women that have lupus in those countries. They have the autoantibodies, but they just haven't had the disease.
The caveat is if they get lupus nephritis, they are going to die because— there is no in Sierra Leone. If they have mild disease, then they are going to continue with what they are doing.
RM: Do you believe there is an environmental factor or factors that contribute to the higher prevalence of lupus and lupus nephritis among African Americans as opposed to Africans?
Dr Gilkeson: That was the theory. Obviously, if there was this gradient then the environment would be what would be the main one and the environmental factor that everybody always looks out for any disease discrepancy there is at malaria.
Whether or not the malaria parasite has an impact on the immune system or any of the parasites themselves or other diseases that are common there impact the immune system. They get EBV and CMV and some of the other viruses very early in life.
The feeling is that either your immune system pretty much gets set before you hit puberty. The theory is that malaria is the most predominant because that's caused the most genetic changes over time. That gene, if you're heterozygous, protects against malaria.
There are some other immune genes that have been shown to lead to protection against malaria, but then are genes that on the other side, predispose you to getting autoimmunity. If you're living in Africa, where everybody gets malaria, then they have a gene that protects you against that.
For the group as a whole is better than not having it.
RM: There are still health care disparities in this country.
Dr Gilkeson: Oh, absolutely.
RM: What do you see, in terms of the difficulty in accessing treatment for lupus and lupus nephritis among these groups in South Carolina?
Dr Gilkeson: There's more of an issue with what we call the I‑95 corridor There's a large black population that lives there, for which a number of the hospitals have closed. They have very limited access to health care. In some ways, we're hoping that the COVID and all this, having to go to telemedicine, will impact that to some extent, in that the patients, we can see them on the video.
It's not as good as seeing them in person, but it's certainly a lot better than nothing at all. We can get their labs done locally. There's a Lab Corp in every town in the US. That is probably going to improve things, to some extent.
For the most part, everybody has a cell phone and the majority of them do have some access to WiFi.
What do you think is the solution to removing those barriers to care and ensuring better equity amongst all of these patients with lupus and lupus nephritis?
Dr Gilkeson: Some of the efforts that we have ongoing is, we have what we called a Patient Navigator named Gary Link.
He's working with our patients that have trouble getting to appointments, and making appointments, getting their meds, and showing them the funds that are available for travel that they can apply for. That's been in the few months we've had him, our no‑show rates have dropped significantly.
Earlier diagnosis is another way to help. We have an outreach to all the HBCUs here in South Carolina, where we're providing education and knowledge, and they have champions there that are reaching out to families.
Edith Williams here, who's a professor in the public health, has set up this PALS program that's been very good, where she has these mentors who are women that have had lupus for a while, and have done well and are coping with it well. Then they serve as mentors for young women that are just diagnosed with lupus.
RM: It's also true, is it not, that the more severe your lupus is, the more likely you are to progress to lupus nephritis?
Dr Gilkeson: Yeah. In Caucasians, it's about 30% to 40% Then in African Americans, it's about 50% to 60%. If you're African American, the chance that you're going to progress to end‑stage renal disease is 10 times higher than Caucasians despite getting the same treatments. Part of that is that A1 gene that I talked about explains quite a bit of it.
There's also delay in diagnosis. You're not going to do as well as somebody that comes in early where you have full renal function.
RM: Any last thoughts for your colleagues in rheumatology who are treating patients with lupus, perhaps particularly African American women, as to what they should look for in terms of being able to come up with that early diagnosis or those early clues that lupus nephritis may be on the horizon?
Dr Gilkeson: The main thing is for them to ‑‑ I think they are doing it more and more ‑‑ is to have lupus on their radar as a possibility for why a young woman is having a funny looking skin rash, or having mouth ulcers, or having joint pains and other things. There's hundreds of things that can cause any of that. But if you keep lupus on the radar and test for it or at least screen for it, then that should help.
As far as if someone has lupus, then they certainly should be followed by a rheumatologist. You can do it in conjunction with a primary care physician.
But they do need to have blood work, urine, and all that done, at least every three months, so when they start having proteinuria, you're picking it up early so that you can biopsy them, and get them on treatment that you need.
The other positive is that we had no new drugs for lupus for 50 years until about 10 years ago when Benlysta was approved. Now, just this year, Benlysta was approved for lupus nephritis as well as another drug, called voclosporin, has been approved.
We have 2 after this long desert. We have a bigger armamentarium to work with.
RM: We really appreciate you taking the time to talk to us today and share your research.
Dr Gilkeson: That's great. I appreciate the opportunity and enjoyed talking with you.