The Hope Foundation has secured significant funding to expand the distribution of potentially life-saving medical kits to lupus patients across Barbados, addressing concerns over “preventable deaths” within the community, the lupus charity has revealed.
Founder and president Shelly Weir said major financial grants—the amounts she’s holding close to her chest—from the Massy Forces for Good and the Ross University School of Medicine, have now made it possible to keep the distribution alive and expand its reach to all who need the kits.
Putting the situation into context, Weir recalled that her organisation had introduced the distribution of lupus preventive kits in a limited way during the COVID-19 pandemic when sick people were told not to go to the emergency room of the Queen Elizabeth Hospital (QEH).
“And we were having what we thought to be preventable deaths among the lupus population, and this was the initiative that we came up with. One of the major benefits that we saw, was it would be able to capture a flare-up very early, it would help patients to stay off of dialysis because the kit consists of a blood pressure machine, the ring testing strips, and a thermometer,” Weir told Barbados TODAY.
Lupus is a debilitating chronic (long-term) disease that can cause inflammation and pain in any part of the body. It’s an autoimmune disease, which means that the immune system—the body system that usually fights infections—attacks healthy tissue instead. The disease also attacks internal organs such as the kidneys and heart.
The Hope Foundation leader, who also has lupus, explained that the results from the kit readings are put on an electronic medical record to show if their numbers are consistent with the doctors’.
“But in evaluating the kits now,” she said, “and we did this with patients who had the kits, to see whether it was worthwhile; and basically, the patients are finding out that it is beneficial; they would recommend it to everybody, and we did this through focus groups. So, as one person put it, the kit can save lives, only if it’s in the hands of everyone who needs it.”
But Weir acknowledged that the focus groups also criticised the Foundation for not distributing the kits to a much wider section of patients. Access was only by appointment at the office.
“Some of the drawbacks to that was because people could not come because they were working, some people were not mobile. The other thing was replacing of the consumables such as the batteries for the blood pressure machine which we never saw as an issue. But when we really went through who were complaining, it was people who have to make daily choices which we quite understand,” she said.
As a result, the foundation is now exploring the possibility of using rechargeable batteries.
“People really need to know what the kit is all about. Of course, we are looking for other avenues . . . people that we could partner with whether it is GPs [general medical practitioners] who have patients within their clinics and they are prepared to work with us. We would supply the kits to the GPs, and see how best we can get them out as widely as possible.”
She also highlighted that it was disheartening to hear from some patients that they never knew the foundation existed, even though it’s been around for three decades.
emmanueljoseph@barbadostoday.bb
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