Sickle Cell As­so­ci­a­tion raises Con­cern over the Halt­ing of Pi­lot Project

The Star (St. Lucia) - - LOCAL - By STAR Re­porter

Pres­i­dent of the Saint Lucia Sickle Cell As­so­ci­a­tion, Paula Calderon, SLPM, J.P. is ex­tremely con­cerned over the Min­istry of Health’s de­ci­sion to halt the new­born Sickle Cell dis­ease (SCD) screen­ing pi­lot project be­ing spon­sored by the Sick­Kids Caribbean Ini­tia­tive (SCI) The project is a re­cently in­sti­tuted new method of test­ing for Sickle Cell dis­ease in new­borns us­ing a heel prick for blood; blood spots on fil­ter pa­pers are then shipped to Ja­maica for test­ing. Calderon told The STAR on Fri­day that her con­cern stems from the fact that the project was halted with­out con­sul­ta­tion with the SCI SCD Work­ing Group which in­cludes - be­sides the SCI spe­cial­ists - lo­cal physi­cians and nurses, lab man­agers and the As­so­ci­a­tion.

Ac­cord­ing to the Sickle Cell As­so­ci­a­tion pres­i­dent, “This path of de­ci­sion-making with­out con­sul­ta­tion is un­ac­cept­able and es­pe­cially so pre­ma­turely, when we do not yet have the quan­tity of sam­ples re­quired to as­sess ben­e­fit.” The SCD Work­ing Group, along with the Sick Kids team, agreed at the last meet­ing to con­tinue ob­tain­ing sam­ples in or­der to make a more ac­cu­rate anal­y­sis. How­ever, the Min­istry of Health seems to have by­passed this de­ci­sion.

Mrs. Calderon said that she was no­ti­fied by a Min­istry of Health con­sul­tant last week, that PAHO has pro­vided funds to iden­tify how par­ents were re­act­ing to the new method of test­ing. But the Sickle Cell As­so­ci­a­tion pres­i­dent is adamant that there are not enough par­ents yet in­volved to ob­tain such in­for­ma­tion. She is also dis­turbed that the St. Lucia Sickle Cell As­so­ci­a­tion has been ask­ing for a con­sul­tant to look at the im­pact of the work of the As­so­ci­a­tion on the health care sys­tem and to date, some ten years later, the Min­istry has not re­sponded pos­i­tively.

Calderon said that she has had many meet­ings with the Min­istry over the years and none of the re­quests have been met, or acted upon. “This lack of sup­port is un­for­tu­nate, and is fur­ther un­der­lined by the ab­sence of the reg­u­lar and valu­able Com­mu­nity Child Health ser­vice clin­ics over the past six months, bear­ing in mind that the life-saving com­pre­hen­sive care sys­tem for pa­tients af­fected by Sickle Cell dis­ease is for the most part man­aged by the com­mu­nity pae­di­a­tri­cian through the out­reach pro­gramme de­vel­oped by the As­so­ci­a­tion,” Calderon said. Since May this ser­vice has not been avail­able, leav­ing the As­so­ci­a­tion’s clients to fend for them­selves.

The Sickle Cell As­so­ci­a­tion is call­ing on the Min­istry of Health to re­spond pos­i­tively and, in so do­ing, to show that it ap­pre­ci­ates the im­por­tance of de­pend­able child health care.

Paula Calderon, Pres­i­dent of the Saint Lucia Sickle Cell As­so­ci­a­tion.

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