Sicklers in the dark - Hundreds of babies at risk of infant illness, death because of testing breakdown at hospitals
Parents of hundreds of babies born in 2018 are in the dark over whether their children have the sickle-cell trait or the full-blown disease because public hospitals were hobbled by inadequate supplies to test for the blood disease, which can cause a range of painful illnesses and early death.
Considering that approximately 300 babies are born with sickle-cell disease in Jamaica, the Sickle Cell Support Foundation of Jamaica (SCSFJ) is now worried that hundreds of babies are at risk of succumbing to infant complications because of supply challenges over several months – during two separate periods – because of inconsistent government funding.
Sickle-cell disease (SCD) is an inherited blood disorder in which there is not enough healthy red blood cells to carry adequate amounts of oxygen throughout the body. Common symptoms include excruciating pain, jaundice, leg ulcers and low energy.
One in every 150 babies born in Jamaica is estimated to have sickle-cell disease, but only about 5,000 people living with SCD are registered with the Sickle-Cell Unit.
Unavailable for more than six months
From 1973 to 1981, The Jamaica Sickle-Cell Cohort Study screened newborns for SCD, but it was only done at the Victoria Jubilee Hospital. After intense lobbying, screening resumed in 1996 and, by 2015, most babies born were being tested in almost the full complement of public hospitals, The Gleaner has learnt. Last year, however, supplies were unavailable for more than six months, putting most newborns at risk.
“In 2018, we were told that the funding had lapsed, the things were not reordered. The Sickle-Cell Unit had been, I guess, in discussions with them to alert them (Ministry of Health and Wellness) to the fact that the supplies were running out and they need to reorder, but it didn’t happen, and there was a period of time, several months, that there was no screening,” said co-founder and president of SCSFJ, Camille Daley. “I understand that they finally brought all hospitals back on stream in about March 2019.”
Daley said that the SCSFJ wants the Ministry of Health and Wellness to order that all babies born without being tested be re-examined in follow-up or vaccination visits, but this is not being done, she said.
“We don’t know how many would have been born with the disease in those months, but what we know for sure is that for you to have the greatest chance of survival, it’s best that the child is tested at birth, because there are a lot of infant complications such as in sickle-cell, there’s a complication where the spleen just start sucking all of the blood out of the body, and it can cause death, so it’s very important that children are diagnosed at birth and parents are trained how to look for these various complications and how to respond to ensure that they survive, because the greatest chance of death is in the first five years of life,” said Daley.
Chief Medical Officer Jacquiline Bisasor-McKenzie told The Sunday Gleaner that there was a resource shortage by the suppliers, and Minister Of Health and Wellness Dr Christopher Tufton promised to look further into the matter.
One in every 10 persons is a carrier of the sickle-cell trait in Jamaica. But even though 15 per cent of Jamaicans are at risk of having a child with SCD – inclusive of five per cent with an abnormal trait – Daley revealed that the Ministry of Health and Wellness said it does not have the funds to inform parents of children born with the trait.
“What would be the point of gathering this information and not sharing it with the families? I was told that the cost is very high, because sometimes you have to make several different phone calls to track down this mother.
“What I say to them is that this doesn’t make any sense. Why don’t you tell the people that their child has a trait so that they can start thinking about the possibilities that I could have a grandchild with sickle-cell and to let all the other family members know that my child has the sickle-cell trait,” Daley told The Sunday Gleaner.
Worry over relationships
Daley said many adults were resistant to sensitisation efforts because of the tensions it could cause to partners in romantic relationships.
“The initial response is always the same thing: ‘My partner will not want to do that’, ‘You a try mash up my love life.’ People are always thinking about their current love life or relationship and they give more precedence or more importance to their present relationship than doing a blood test that, in their mind, could cause that relationship either to end or for there to be a problem,” said Daley.
In 2015, SCD was added to the list of chronic conditions covered by the National Health Fund (NHF). Daley said while grateful the coverage is inadequate as most commonly prescribe medications are not usually covered. Daley said it takes $5 million a year to operate the Sickle-Cell Unit – not counting staff salaries.
“The foundation is calling for the ministry to provide funding to the Sickle-Cell Unit. We want the unit be part of the Government free healthcare system, as it sees patients from all parishes in the island. We wish the poor patients who lack health insurance to be able to fill prescriptions written by doctors at the unit at DrugServ pharmacies and to be able to be referred to public hospitals for diagnostic tests like blood tests, X-rays, ultrasounds, CT scans, which they cannot afford.
“UWI has cut the budget to CAIHR (Caribbean Institute of Health Research) which houses the unit. It’s causing the unit to introduce registration fees of $500 and to increase the cost for blood tests,” said Daley.