Foundation calls for more research on lupus
The paucity of data on the presentation, treatment and care of lupus in Jamaica is making it difficult for doctors to effectively deliver care to patients.
It is against this backdrop that members of the Lupus Foundation, who were guests at a Gleaner Editors' Forum yesterday, have called for a broad-based programme of research to understand the nature of the illness within the local context.
Lamenting that lupus has largely been ignored in medical circles because of how difficult it is to diagnose, Dr Stacy Davis, president of the Lupus Foundation, pointed out that this is a global problem within the medical community.
According to the Alliance for Lupus in the United States, lupus patients are the most medically underserved in that country. The Alliance has also lamented the lack of funding for lupus research.
Based on the soundings of the Lupus Foundation, this appears to also be the case in Jamaica.
"Internationally, they are just starting to pick up on it, and it was a known fact up to a few years ago that even international lupus research was kind of put on the backburner, compared to other illnesses," she said.
Lupus is reported to show a high prevalence among Afro-American and Afro-Caribbean people, a fact which Davis says she is not certain explains why there has not been much research on the illness.
"I could not say it's because it's black. I think there are a lot of factors that play into why this condition was not looked at, but certainly, in the last few years, there have been studies," she added.
Davis also spoke to what she calls a treatment gap, noting that Benlysta, a drug used to treat lupus, is the first lupus treatment approved by the Federal Drug Agency in the United States in more than 50 years.
"There are many factors. There might be some level of cultural hesitancy among blacks in certain populations to even be involved in studies. There may be hesitancy of pharmaceutical companies to invest in certain illnesses if they can't see a certain level of payback, but thank God, we are seeing some improvement, and now it's time for us in the Jamaican context to catch up with the rest of the world and do better in terms of what we can do for our lupus patients," she said.
For her part, consultant nephrologist Dr Charmaine Watson-Brown called for research to establish baseline data that can be used for a national lupus registry.
"We would have to start with getting some epidemiological data, because we really don't have our own local data for our patients. ... A lot of what we have been quoting have been international studies, so we would have to start basic, get our epidemiology off, and then once we have established that, we can look at clinical features - how patients present - and then we might also want to look at how patients respond to therapy," she said.