Hope Foundation faces closure, says founder

By Emmanuel Joseph

The charity that has been dedicated to supporting people dealing with lupus, sickle cell anaemia, and rheumatoid arthritis for the last 33 years faces imminent closure, its founder said on Monday.

President of the Hope Foundation Shelly Weir warned that the organisation may have to cease operations owing to a substantial decline in government funding over the years.

“The consistent reduction in government support over the last three years is alarming,” Weir told Barbados TODAY in an interview. “This financial strain is severely impacting the foundation’s ability to continue its vital services and support for patients.” 

The charity, which was formed in 1991, a year after Weir was diagnosed with lupus – an inflammatory disease caused when the immune system attacks its own tissues –, needs urgent attention to its finances to prevent unnecessary pain, suffering and avoidable deaths, she said.  

She said the reduced support could adversely affect those with lupus, sickle cell anaemia, and arthritis.  

“The suggestion that the government may be contributing to the potential demise of Hope Foundation is distressing, particularly as it implies discrimination against those with lupus, sickle cell and arthritis,” she said. “My concern is that a lot of attention and money is being given to lifestyle-related diseases, and for the last 33 years, we were the only ones that paid any attention to these three conditions, and we have done a lot of work. Based on the lack of government resources and all that, chances of us closing our doors are a reality now.”

The foundation heavily relies on volunteers for initiatives aimed at advocating for its clients and raising public awareness about these diseases. Weir underscored the willingness of donors to support the organisation if government funding is secured.

However, when contacted by Barbados TODAY, Minister in the Ministry of Finance and Economic Affairs Ryan Straughn said he was unaware of the foundation’s plight and committed to investigating the matter.

“I would have to look into this as I’m not aware of the issues being raised here,” he said. “I do know, however, that the Ministry of Health and Wellness has received significant increases in expenditure over and above the COVID expenditures during the past five years, for which all patients benefit.”

Weir recalled the foundation’s initial request for government assistance 16 years ago to cover administrative costs, contending that it is the government’s responsibility to support its role in the healthcare system. She stressed that donor contributions are contingent on the assurance that the organisation will remain operational.

“When I had applied for the subvention in 2007, it was with a simple request to help us to meet our admin costs, because those are costs that donors are never willing to meet. And I think it is the responsibility of government if they think the role we are playing is important and that it helps the healthcare system, which I think it does,” Weir declared. “My argument has been, and remains, that once we are able to assure donors that we will keep our doors open, donors are willing to give money for programmes. 

“The organisation was established in 1991 and it seems to me that every time we have to legitimise our organisational status…and we also seem to need to say sorry for having lupus, sickle cell anaemia or arthritis…sorry that we didn’t get a condition that was lifestyle-related.” 

The Hope Foundation’s leader also voiced “deep concern” over the absence of a rheumatologist at the Queen Elizabeth Hospital. She called for systemic changes to ensure equitable care for individuals with chronic illnesses.

“I wish somebody would pay some interest because it is really, really bad for the patients,” said Weir. “For the first time in 27 years, there is an absence of a rheumatologist in the public sector, amplifying the lack of access to healthcare. This underscores the urgent need for systemic changes to ensure equitable care for individuals with chronic illnesses. Discrimination in healthcare based on the nature of the disease or its prevalence can no longer be tolerated, and every effort must be made to uphold the rights of individuals affected by these conditions.” 

She urged transparency in policy making, advocating for comprehensive and empathetic healthcare approaches.

Weir said: “Awareness and proper pain management would be a reflection of a comprehensive and empathetic approach to healthcare. Reasonable and adequate support paired with policy changes is crucial to address the specific needs of individuals with lupus, sickle cell, and arthritis.”

She raised other concerns about what she described as an alarming trend of consistent reduction in government support over the past three years, severely impacting the foundation’s ability to provide essential services and support. The president emphasised the need for urgent attention to prevent unnecessary pain, suffering, and avoidable deaths, citing reported concerns about outpatient clinics’ prescription practices.

“Recent practice in outpatient clinics of repeating prescriptions without proper review and requisite tests, as reported by patients, is concerning,” said the advocate. 

She indicated that the organisation’s continued efforts in addressing both the medical and emotional needs of those with these chronic illnesses, as well as its initiatives, such as the Lupus Essential Kit and free screenings for rheumatoid arthritis, highlight the importance of its work.

“The plea of Hope Foundation, as the sole beacon, is for equitable access to care and the need for a collaborative effort to ensure the well-being of those living with chronic illnesses and to prevent unnecessary suffering,” said Weir. 

emmanueljoseph@barbadostoday.bb