The Sickle Cell Unit (SCU) became a unit of the Caribbean Institute for Health Research (CAIHR), formerly the Tropical Medicine Research Institute, in 1999. The unit’s goal is to improve the lives of people living with sickle-cell disease (SCD) through clinical care, research and education.

The SCU is the only comprehensive facility for the care of people with SCD in the English-speaking Caribbean. In fact, the unit is one of the largest such facilities worldwide, with more than 5,000 registered patients. More than 3,000 individuals are treated annually, accounting for more than 9,000 visits.

On an average day, approximately 45 patients attend the unit. There is an eight-bed Day Care Unit which functions at the level of an Accident & Emergency Unit, administering analgesics, including narcotics, transfusions, nebulisation, oxygen, intravenous fluids, as necessary. There are monthly orthopaedics and urology specialty clinics. The SCU team also operates monthly clinics in Montego Bay and Black River, providing health maintenance visits for rural patients.

The SCU has published more than 400 papers in medical journals about various aspects of SCD.

Recent important findings include:

• The rate of a serious blood infection is lower in Jamaican children with SCD than is observed in many other countries, due to our approach to giving antibiotics;

• Hydroxyurea, now subsidised by the National Health Fund, can decrease the risk of recurrent strokes in children;

• In people with SCD, wheezing/asthma is associated with more illness and earlier death; and

• Affected adolescents are at higher risk of practising risky behaviours and experiencing depression and suicidal thoughts than their peers.

Information from a landmark Jamaican Sickle Cell Study, decades ago, demonstrated that testing babies at birth for SCD (newborn screening [NBS]) can be done on a population-wide basis, and that inexpensive interventions such as penicillin, vaccines and parental education can make a huge impact on survival of individuals born with SCD.

Whilst it is estimated that only 50 per cent of infants born with SCD in Africa, where NBS is uncommon, live to five years of age; in Jamaica, those who are screened at birth and cared for at the SCU were no less likely to survive to five years of age than children who do not have SCD, despite resource constraints.

The SCU has been partnering with the Ministry of Health, the Sickle Cell Trust and the Sickle Cell Support Foundation to extend NBS islandwide.

As of December 2015, more than 98 per cent of infants born in Jamaica are being screened at birth. This was assisted by the donation of equipment from the people of Brazil, through the Pan American Health Organization and Sagicor. The SCU has provided training and education to students in health professions and practising health workers (HCW) from every regional health authority to improve their confidence and competence.

Furthermore, through the unit’s contribution to the Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia and the SickKids Caribbean Initiative (SCI), the SCU is involved in the training of HCW, from various islands of the region and in NBS screening in several islands of the Caribbean; the samples from St Lucia are tested in the laboratory in Jamaica. The Sickle Cell Unit Clinical Care Guidelines have been endorsed by the Ministry of Health and the SCI and are in use nationally and regionally. The SCU encourages HCWs to use the guidelines to aid them in using evidence to inform patient care.

For more than 45 years, the work of generations of dedicated staff at the SCU has positively impacted the lives of people living with SCD nationally, regionally and internationally.

We CAIHR (care).

Professor Jennifer Knight-Madden is the director of the Sickle Cell Unit at the Caribbean Institute for Health Research.

Professor Jennifer Knight-Madden is the director of the Sickle Cell Unit at the Caribbean Institute for Health Research.