Lack of funding preventing sickle cell mass education campaign

BY INGRID BROWN Associate editor special assignment

Monday, February 04, 2013

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SEVERE lack of funding has prevented local sickle cell organisations from rolling out a mass public education campaign, despite some affected persons not being able to lead full lives as a result of the heavy stigma and discrimination associated with the disease.

"We don't have the level of funding that would allow us to approach it in the more organised and structured way that we would like [similar to those campaigns targeting HIV/AIDS], so we have to be working with the piecemeal approach that we have," Professor Marvin Reid, director of the Sickle Cell Unit, told reporters and editors at the weekly Jamaica Observer Monday Exchange yesterday.

As such, he said the focus has been a grass-roots approach, taking the public awareness message to groups at schools and churches, as well as being integral in having sickle cell disease in the medical curriculum for all categories of staff in the health services sector.

"So, even with the limited funding, we have been actively in the field," Professor Reid said.

Meanwhile, co-founder and director of the Sickle Cell Support Club of Jamaica Camille Daley said what is needed is a major media campaign to address the many myths which have been fuelling the stigma associated with the disease.

She explained that children have been known to be nicknamed 'soon dead', while other infected persons are seen as 'sick sick' and that they lack the ability to ever reach their fullest potential.

"What we really need is a media blast because I think it is the most effective thing at this juncture," Daley told the meeting.

She, however, lamented the fact that there is no external funding to mount a campaign, despite the club's ability to produce infomercials.

Meanwhile, Professor Reid said despite the decades-long work of the unit in tackling sickle cell disease, funding continues to pose the biggest challenge.

He cited the example of Brazil, which started a national sickle cell programme after Jamaica and which now serves as the model for developing countries.

"Brazil started after us, but they are ahead of us because their Government took a policy decision that sickle cell disease was a priority for them and so they diverted quite a considerable amount of funds to their sickle cell disease programme," Professor Reid said.

Not only is the Sickle Cell Unit deprived of the necessary funding to launch a full-scale public education campaign, it barely exists on the budget it is allotted to roll out services to the thousands of persons affected by the disease or who are at risk of being affected.

Professor Reid explained that as a department of the University of the West Indies the Sickle Cell Unit receives its primary funding from the university, which in turn receives its money from the Ministry of Education.

"The University of the West Indies provides the basic budget to cover human resource costs and utility bills, but all additional funds for a lot of the programmes have to be raised through external funding agencies and donors," Professor Reid explained.

However, that is never enough to suffice, as Reid said some US$30,000 is needed to cover the cost of its neonatal screening programme, and that does not take into account the cost to operate a clinic which offers health maintenance checks and an eight-bed urgent care facility.

"We would say the university provides the institute with a budget of about $19 million per annum and every year we are at a deficit because we just don't have enough to take care of the patients," Reid said.




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