More help needed for haemophiliacs

A call has been made for more assistance for children with haemophilia and their parents dealing with the disease, particularly given the high financial costs associated with treatment.

It came from President of the Barbados Haemophilia Association Erica Worrell as the Queen Elizabeth Hospital (QEH) received a donation of chairs and a scale from the association and Grady Marketing Inc. on Thursday.

Worrell, whose son has haemophilia, a rare condition that affects the blood’s ability to clot, said: “When I was checking the costs of my son’s medication it was at least $600 a box, and I know that a box is not a dose, and he uses three to four boxes of prophylactic treatment per week, and he is not the only person.

When I was calculating that, even though it’s less than 100 patients here who use that medication, that is thousands of dollars.”

Registered nurse Virginia Leandre-Broome, who works in the hospital’s Haematology Department, noted that while the number of people in Barbados with haemophilia is low, parents should pay special attention to random bruising and bleeding on their children, especially boys, as that could be a symptom of the disease.

She said immediate attention is required if signs do appear.

“Here in Barbados, we have two types – Haemophilia A and Haemophilia B – and both of them need [medication used to treat and prevent bleeding] to survive. Any bruises, any bounces, even the little babies creeping on their knees, they can get bruising and they can get bleeding,” Leandre-Broome said.

She added that thanks to the work of Dr Cheryl Alexis and other professionals working in the area of Clinical Haematology on the island, many strides have been made so far, including allowing persons with Haemophilia A to get their Factor VIII medication for free.

“She [Dr. Cheryl Alexis] is embarking on registering all of these patients, ensuring that each one, especially the Haemophilia As, are able to get Factor VIII free. This has worked out very well. We also have a physiotherapist that is working along with us because we want to have a wide spectrum of care for our patients,” she added.

“We incorporate not only the patients but the relatives, the caregivers, even if some person that lives next door usually looks out for the child, the day nursery, wherever we [provide] them with information, education.”

Meantime, Minister of State in the Ministry of Health and Wellness Dr Sonia Browne thanked Worrell and the Barbados Haemophilia Association for their donation, saying that all contributions to the work of the hospital were welcomed and appreciated.

“Although they are not many in terms of population, haemophiliacs in the country do need the services of the hospital. I have a whole family or two that are haemophiliacs and I know they have it hard.

“For them [the association] to come forward and offer this generous donation of the scale and the chairs to the Haematology Department, I can only say ‘thank you’. I want to say whether the donation is large or small, the Queen Elizabeth Hospital and the Ministry of Health are very appreciative,” Dr Brown said. (SB)