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.