A four-year research project involving six health facilities in Kumasi has improved access to essential sickle cell treatment, including hydroxyurea and penicillin.
The project has also helped reduce waiting times for patients and tackle stigma through community education.
Professor Alex Osei Akoto, a paediatrician and sickle cell specialist at the Komfo Anokye Teaching Hospital, disclosed this at the Study Protocol Participatory Approaches to Support Patient-centred Sickle Cell Disease Management in Africa (PACTS) Conference in Kumasi.
The project, led by the Liverpool School of Tropical Medicine in the United Kingdom, brought together collaborating institutions from Ghana, Nigeria, Zambia, the UK and the United States.
It focuses on three key interventions in sickle cell management; hydroxyurea, penicillin prophylaxis and blood transfusion.
Professor Akoto said the project was initiated to identify barriers preventing sickle cell patients from accessing essential treatment and develop practical solutions to address the challenges.
“Apart from Komfo Anokye Teaching Hospital, which was offering hydroxyurea to its patients, all the five other health facilities did not have that. Patients who accessed health in these facilities had to go back to Komfo Anokye Teaching Hospital to access the hydroxyurea,” he said.
Through the project, the participating health facilities have identified gaps in sickle cell management and developed solutions tailored to their specific needs.
According to Professor Akoto, all six facilities now have access to penicillin and hydroxyurea, with hydroxyurea covered by the National Health Insurance Scheme.
The project has also addressed the challenge of administering hydroxyurea to children who cannot swallow capsules.
“All the institutions have learned how to reconstitute these capsules into suspension for the children. Currently, mothers go and get their pills or capsules, and the institutions themselves will reconstitute for them. And it has helped a lot,” he said.
The intervention has also contributed to reducing the time patients spend waiting for care.
At Komfo Anokye Teaching Hospital, for instance, the waiting time at the pharmacy has reportedly dropped from about four hours to one and a half hours.
Dr Lawrence Osei Tutu, a pediatrician and sickle cell researcher at KATH, said the improvements had been achieved without much financial investment, raising hopes that the model could be sustained and replicated across the country.
However, he noted that challenges surrounding sickle cell disease extend beyond health facilities, with stigma and limited public understanding still prevalent in many communities.
“Even though many people are aware of sickle cell disease, they don’t know the nitty-gritties of the disease. And so stigma and a lot of other things are there,” he said.
Community groups involved in the project have consequently been educating families and the public through community engagements, radio programmes and school outreach.
Dr Osei Tutu believes improving public understanding of sickle cell disease is critical to reducing stigma and helping people living with the condition access timely care.
He is therefore calling on the Ministry of Health and the Ghana Health Service to adopt and scale up the lessons from the project.
“As the project comes to an end, most probably we are going to disseminate this thing to Ghana Health Service, to the Ministry of Health, to help probably sustain it in many, many areas of Ghana, so that people across the country would have the help that they need,” he said.
The researchers have called for the expansion of newborn screening for sickle cell disease to all regions, saying early identification must be matched with education and access to appropriate care.
They say the ultimate goal is to ensure that where a person lives does not determine whether they can access essential sickle cell care.
By Kwaku Acheampong
