Foundation’s Kit impacting fight against NCDs

By Kimberley Cummins

The Hope Foundation’s locally produced Lupus Essential Home Kit has been given the nod internationally as an innovation to address global challenges in rheumatology.

In fact, the president of Hope, Shelley Weir told Barbados TODAY they learnt this week that the kit was one of only four innovations selected globally in the field and it will be featured at the American College of Rheumatology’s inaugural Global Rheumatology Summit on November 3.

This endorsement is a timely and welcomed boost in light of financial challenges the association faces, which have been made more difficult by the government’s cut of almost a third of the foundation’s subvention.

Nonetheless, Weir was ecstatic about the news and remained hopeful that persons locally would now see the value of the initiative.

“Already we are seeing that the kit could also be adjusted to suit other NCDs [non-communicable diseases] and I have had a request from a sister island to implement the programme.

So this tool definitely has value and is there to be replicated for people who can see its value. Dr Cindy Flower will be presenting the project at the summit in November where thousands of Rheumatologists worldwide will be able to see how it is done and from that, I expect it will be replicated across the world.

The Lupus Essential Home Kit is a low-cost project, it hasn’t cost the government anything but it is saving the government a lot, it is saving the hospital a lot and it is applicable across the world,” Weir said.

As a consequence of the COVID-19 pandemic and the subsequent stay-at-home orders, the lupus kit was launched last December as a necessary tool to help the most severe lupus sufferers maintain good health.

In some cases it allowed the rheumatologist to flag any potential problem quickly, thereby keeping the patients away from the Queen Elizabeth Hospital (QEH).

The kits contain an automated blood pressure machine for daily, weekly, or monthly home blood pressure measurements as the clinical circumstances dictate; urine dipsticks for monthly home assessment for proteinuria; and a thermometer for documentation of a fever when patients feel unwell, as patients with lupus are particularly vulnerable to infections.

Patients are instructed to upload their recordings to the Hope Foundation website via a confidential password protected Health Portal which is accessible for review by the rheumatologist and a volunteer physician.

Weir reported that 80 kits were distributed in the initial phase with the assistance of CIBC First Caribbean and six months in, they are confident that it was working given the fact that of that number zero persons were hospitalised.

“Through the electronic monitoring, treatments have changed for blood pressure so early o’clock the doctor was able to pick up that, by patients testing the urine the Pathologist and also the Rheumatologist is able to detect earlier if something is going wrong and therefore new therapies and treatments would have been introduced and we are already seeing a decrease in the need for dialysis and so on,” she said.

At present, there are approximately 300 lupus patients in Barbados and 25 new patients are diagnosed annually.

Lupus is the fifth-highest cause for dialysis at the QEH which is estimated to cost the Government $48,000 per year per patient.

“So the idea was to get kits to the most severe patients first, now we are rolling out to all patients because it is just as important for every patient to be monitored.

Can you imagine having to go to the hospital just to get your blood pressure taken, just to get your urine tested? We have been able to eliminate that so we need more funding to carry on the programme, and we need more support to just exist and be able to manage the programme.

As it is, we have been doing a lot of big things on very limited resources and what carried us through is the passion and the will to see it done.

We know it is the right thing to do and it is the determination to ensure that it is done but that can only go so far. I would hope that the powers that be see the value of what we are doing, how it could be applied more widely and to help us to go further,” Weir added.

In an effort to keep its doors open to the public, Hope has the ongoing Keeping Hope Alive: 30 for 30 campaign.

It is also an effort to mark its 30th anniversary, celebrate its accomplishments, and spread the word of the work they have been doing to make a difference in the lives of sufferers of chronic illnesses.

People are encouraged to assist by sharing the news of the campaign, and giving at least $1 for each of their 30 years by cash, cheque or bank transfer.