A call for more government support for lupus patients

THE president of the Voice of Lupus Foundation, Reeanna Harrilal, is appealing for increased government support for lupus patients.

She made the call as the foundation marked World Lupus Day on May 10 at the Brian Lara Promenade in Port of Spain.

Harrilal said lupus patients face an uphill battle when it comes to qualifying for disability assistance and grants to cover daily expenses. She said because of the debilitating effects of lupus, patients find it difficult to maintain full-time employment.

She said, "Distressingly, we are hearing reports from patients that some doctors in the public health system are refusing to sign the required medical forms when they apply for public assistance and disability grants. These physicians appear to lack an understanding of how severely the disease can impact a person’s ability to work. This results in applications being rejected and departments being denied the financial aid they desperately require.”

She said patients also get denied because of the invisible nature of lupus symptoms or because their condition is not deemed limiting enough at the time of application, despite the relapsing and flaring nature of the disease.

She said even when patients get approved the amount given is not enough to make ends meet.

“The monthly disability grants make it a struggle to afford rent, medications, medical equipment and basic necessities. Out-of-pocket medication costs alone can run into the thousands per month, creating crushing financial burdens.”

She said a more compassionate and educated approach is required to understand the toll of the disease and urged lawmakers to ensure doctors are properly trained on lupus in order to remove barriers patients face to accessing public assistance.

Youth ambassador for the foundation Sachia Strachan said the foundation plays an important role in helping struggling patients meet their basic needs.

“What the foundation does is assist the patients because not a lot of us are working. The foundation provides help in terms of food, sourcing medication and financial support as best we can. Lupus affects our ability to work and though some have been lucky enough to access disability grants, others have not.”

She said the government should do more for lupus patients since the foundation's assistance can only go so far.

Giovanna Ruiz, a Voice of Lupus volunteer, said the foundation has made a significant impact on her lupus journey.

She said, “Reeanna is the heartbeat of the foundation and she really looks out individually for each person. During covid19, I was having trouble purchasing my medication because people were purchasing it to fix covid, so there was a shortage in our community. I reached out to her and she was able to get me boxes of the medication.”

Susan Ollivierre, administrator for the senior citizens group in the foundation, said she has been a member since 2018 and currently works to ensure public awareness of the disease.

“I found the group when I was diagnosed and started searching. I was kind of clueless. You hear such negative things about lupus, like if it is a death sentence, so people tend to be negative towards us and ask if it is HIV or cancer. We try to educate the public so they know what we are dealing with."