Lupus Foundation

PLEADING WITH CITIZENS: President of the Voice of Lupus Foundation Reeanna Harrilal, seated at right, with other members of the foundation.

AS T&T and other governments around the world took unprecedented measures to flatten the curve of the COVID-19 outbreak, a new crisis was emerging for the lupus community in this country. It all started when US President Donald Trump and other leaders touted the use of the drug Hydroxychloroquine as an effective treatment against coronavirus.

Hydroxychloroquine which is also sold under the name Plaquenil is a disease modifying anti-rheumatic drug. It is used to treat malaria, rheumatoid arthritis and some symptoms of lupus. This drug is used by 90 per cent of lupus patients around the world. In Trinidad and Tobago it’s used by approximately 75 per cent of lupus patients to control their condition, the president of The Voice of Lupus Foundation Reeanna Harrilal told the Express. Lupus patients use this crucial medication to treat fatigue as well as skin and joint problems. It also prevents the disease from moving to other organs.

When the announcement was made that Hydroxychloroquine could potentially be used to treat COVID-19, the public went crazy and began to hoard the drug which then resulted in a shortage, said Harrilal.

“With the hoarding came price-gouging. A pill which would normally cost three to four dollars went as high as $12 just for one. This certainly alarmed me,” added Harrilal. Even after the Minister of Health warned persons not to hoard these drugs - up to late last week patients were still having problems accessing the medication.

‘Robbing person who needs it”

Those who have stockpiled this drug are actually robbing persons who need the drug the most, she said.

Harrilal is currently stuck in New York and facing serious health challenges. She is longing to return home. As ill as she is, Harrilal continues to defend the rights of persons living with lupus back home. She told the Express that in one day alone she received 32 calls from patients with lupus and rheumatoid arthritis who said they could not find the drug. Others complained that they were unable to access clinic appointments to refill their prescriptions for Hydroxychloroquine. Without this medication, lupus patients whose immune systems are already compromised are doubly susceptible to contracting COVID-19.

Lupus is a chronic debilitating autoimmune disease where the body’s immune system turns against itself, becomes overactive and creates antibodies that destroy healthy organs, tissues and cells, explained Harrilal. Hydroxychloroquine more or less modifies the immune system in terms of calming it down.

If lupus patients come off Hydroxychloroquine, within a week or two, they can go into what is known as a ‘lupus flare’. The symptoms can range from mild to severe.

“This drug is essential for anyone who needs it for medical reasons. Our lupus community may not be huge in comparison with other communities that represent HIV/AIDS, diabetes and cancer but we have more than 1,000 patients on our general registry and I know that they are having a hard time getting the medication,” said Harrilal.

Shortage raises

another question

The shortage of this drug has raised another important question said Harrilal: How is it that persons from the general public have been able to get this drug (which is a third schedule drug) without a prescription in the first place? Harrilal contacted the Ministry of Health regarding the concerns of the Voice of Lupus Foundation.

The Health Minister later warned persons against stockpiling Hydroxychloroquine and also asked those who have done so to return them to the pharmacies or donate them to The Voice of Lupus Foundation. In turn, Harrilal said those returning the drug must make sure that its original packaging has not be tampered with or destroyed.

“We cannot give patients medications that have already been opened,” she said.

What the public is failing to take into account said Harrilal, is the harsh side effects of Hydroxychloroquine or Plaquenil as it’s commonly referred to.

“One of the side effects is vision loss and colour blindness. It can also have a serious impact on your liver and kidneys. If your genetic makeup is predisposed to developing autoimmune diseases or anaemia, you can become anaemic. I think the public is thinking that this drug is like panadol, tramadol or paracetemol,

They are not understanding the severity of this medication. If not taken as prescribed, a person can actually poison himself,” she warned.

There were three deaths in South Africa related to persons who took the drug. It was also reported that a couple in the US who were using it ended up in hospital; the husband died and his wife is in critical condition.

Additionally, taking Hydroxychloroquine does not make you immune to contracting COVID-19, Harrilal clarified.

“The fear, chaos and panic is a far greater threat to humanity than any virus, especially this one. On behalf on the Voice of Lupus Foundation, we are urging the population: please don’t let fear dictate your decisions. Only obtain the drug if you truly, truly need it,” said Harrilal.

Anyone wishing to get in touch with the Voice of Lupus Foundation can call its hotline: 327- 0220.

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