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Soon dead? Experts dismiss belief sickle cell a death sentence

Employers discriminate against sickle cell patients, say experts

BY NADINE WILSON Observer staff reporter wilsonn@jamaicaobserver.com

Tuesday, February 05, 2013    

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SICKLE cell experts yesterday debunked as myth, a common belief that the illness is a death sentence, and appealed to Jamaicans to end stigmatisation and employment discrimination of people with the disease.

Director of the Sickle Cell Unit Professor Marvin Reid, and officials of the Sickle Cell Support Club of Jamaica and the Sickle Cell Trust, told the Jamaica Observer Monday Exchange that the nature of the stigmatisation has resulted in depression among many sickle cell patients.

"The typical perception of most people is that people with sickle cell die, and die very early," said Professor Reid, who pointed out that the life expectancy of sickle cell patients is just about 10 years less than the average life expectancy of Jamaicans.

Co-founder and director of the Sickle Cell Support Club of Jamaica, Camille Daley, said that the stigma is even perpetuated by those who would be considered enlightened based on their academic qualifications.

"I have actually met people whose families have given their children with sickle cell the pet name 'soon dead'," she said, adding that she is aware of a case in which a mother migrated and filed for all her children except the one she called 'soon dead'.

"I think that somewhere in the back of everybody's mind is that you'll soon be dead. So the assumption is really if you don't do as well in your education, it's really not that big a deal, because you'll soon be dead," she asserted.

The group noted that the workplace is another environment where sickle cell patients are discriminated against, resulting in some of them refusing to tell their employers of their status, if a medical examination is not required for the job.

"In some cases where the person does get the job, they don't want to put them on the company's group medical health plan, so they will get hired, but they won't receive any health insurance or any life insurance. But there are persons who, because they are so desperate for that job, go along with that and they don't have a lawyer to challenge it," said Daley.

Added Reid: "The impression that we have is that a lot of persons, once it is discovered that they have sickle cell, they are not offered or they are not given the sort of employment that they deserve, which they would have merited if sickle cell disease was not a factor."

The group noted that the stigmatisation is not just confined to the family members of sickle cell patients and their employers, but extends to the school environment and is also very much an issue in some sections of the health sector.

"A lot of parents don't tell the principal or the form teacher that the child has sickle cell, because they are afraid of how that child will be treated in the school community; because many children are in fact teased mercilessly, and sometimes even the teachers say "oh, this child is wutliss" because they are often absent," Daley noted.

But despite the health challenges faced by sickle cell patients, co-founder and director of the support group Morette Wright, pointed out that not everyone with the disease experiences the painful symptoms often associated with the condition.

"We have to be balanced, because we don't want to perpetuate the stigma also. It's chronic, and it has its impact, but it's highly variable, so you have persons at different spectrums of the equation," she said.

A real concern for the group is the fact that the discrimination has resulted in several sickle cell patients undereducated and living in poverty.

"It's a real concern that we need to look at," said Daley. "It's not just a human rights issue that people should be educated, it's an economic issue. They have to be able to support themselves, because they'll be alive at 30 and 40 and 50, and they'll need to have an income, and that's an issue that parents are not getting."

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