10 % of sickle cell patients need bone marrow transplant

About 10 percent of the children with sickle cell who receive treatment at Mulago National Referral Hospital need a bone marrow transplant, specialists have said.

Mulago sickle cell clinic is the oldest and longest specialized clinic, has enrolled at least 17,000 children in care but only 5,000 seek treatment routinely.

Speaking on the sidelines of the training in pre and post-bone marrow transplant, Dr Phillip Kasirye, the head of Mulago’s sickle cell clinic said, ‘’With optimal routine care about 10% or less of their patients will need a bone marrow transplant,’’

He said 90% of sickle cell patients should be stable with optimal routine care adding such patients should have routine vaccination, including pneumonia vaccine, penicillin prophylaxis, routine medication including use of folic acid especially hydroxyurea, and good nutrition.

He also said it is necessary for patients to have proper hydration, hygiene, and a balanced diet as part of the package that could constitute optimal, pre-bone marrow transplant care.

A bone marrow transplant or stem cell replaces damaged blood cells with healthy ones.

According to experts, the bone marrow transplant is the only approved cure used to treat a number of cancers, and sickle cell anemia and thalassemia.

 At the moment, Uganda Cancer Institute (UCI) and Joint Clinical Research Centre (JCRC) are in the advanced stages of setting up bone marrow transplant units and Mulago Specialized Unit has also catered for the provision of transplant services.

He however expressed concern that some of the sickle cell patients have not been empowered to appreciate that they need to be in a chronic care setting to be able to benefit from the available healthcare services.

 Statistics

In Uganda, it is estimated that 20,000 babies per year are thought to be born with sickle cell disease.

The national-wide sickle cell survey 2014/2015 puts the national average of the trait at about 13.3percent and the disease at about 0.73 percent.

The report reveals that north, central and eastern regions carry the highest burden of sickle cells. In the north, the prevalence of sickle cell trait stands at 20 % while in the central region 15% and Eastern Uganda is at 19%.

According to Kasirye, the pre and post-bone marrow transplant training comes at a time when there are gaps in the post-bone marrow transplant management.  “It is befitting to have someone come in and take us through those aspects of care after the bone marrow transplant,’’ he said

Dr Gaurav Kharya, Director of Hematology, Bone Marrow Transplant, and Cellular Therapy Indraprastha Apollo Hospitals Delhi, hailed Ugandan doctors for providing standard care to sticklers.

Kharya who treats some of the Ugandan patients said ‘’The sticklers who come from Uganda are very prepared and so they are in much better shape as far as the World Health Organization is concerned. Once they come to us in that condition the outcomes of the bone marrow transplant are very good,’’ he explained

He, however, reminded experts that every transplant programme is governed by guidelines which are practiced for solid organ transplants, like kidney, liver, intestines, heart and lung are different from the guidelines on which bone marrow works, adding that it was important to segregate the two things right from the beginning so that when they move forward, there is no confusion between the two.

He said for a transplant to take place, there are some criteria they follow, and if a child meets it, the patient is a candidate for a transplant.

Dr. Jessica Nsungwa, the commissioner for maternal and child health said even when the country is not yet ready to conduct a bone marrow transplant, there are systems in place to identify who needs the service.

About Dr Gaurav Kharya

Dr Gaurav Kharya, is a pediatric hemato-oncology and bone marrow transplant specialist, currently associated with Indraprastha Apollo Hospitals, Delhi as a senior consultant and head of the pediatric hemato-oncology immunology and bone marrow transport department.