Capacity building and networking to make newborn screening for sickle cell disease a reality in Haiti

Newborn screening (NBS) is one of the most important public health initiatives for decreasing mortality in children with sickle cell disease (SCD). This initiative requires a solid infrastructure and national support. In 2010, newborns were screened in St Damien Hospital in Port-au-Prince, but the samples were processed outside Haiti.¹  The SCD incidence reported was 0.58%. However, until 2017, there were no consistent NBS programs in Haiti with testing performed at local hospitals.

Our objective is to demonstrate the feasibility and capacity building of NBS programs performed in Haiti and to describe the incidence of SCD among tested newborns in Haiti.

We obtained approval for our program from the Ethics Committee at Hôpital Universitaire Justinien (HUJ) because the program is performed as research. The Hôpital Universitaire de Mirebalais (HUM) Program is performed as standard of care. All newborns at HUM in the Central Plateau and HUJ in Cap-Haïtien are screened for SCD. Three other hospitals are in the process of starting screening programs: Hôpital St Damien/Nos Petits Frères et Soeurs, Hôpital La Paix, and Hôpital Universitaire d’Haïti. All are in Port-au-Prince or in the vicinity (Tabarre). Hôpital St Damien will perform laboratory testing for these 3 hospitals. Ofelia Alvarez, started the HUJ Program with Rony Saint Fleur. Natasha Archer, started the HUM Program with Romain Jean Louis. The hospitals in Port-au-Prince have the support of Institut Necker and Pierre Fabre Foundation. In addition, they have formed a network with the programs that have recently started.

Capacity building began with the acquisition of isoelectric focusing machines (IEFs) at HUJ and HUM. Laboratory technicians were trained on site by Perkin Elmer staff (makers of the IEF equipment), a volunteer technician based in the United States, and the Laboratoire de Génétique Moléculaire and Pathologies Héréditaires du Globule Rouge, Pointe à Pitre, Guadeloupe (supported by the Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia [CAREST]). Capillary electrophoresis machines will be delivered to St Damien Hospital soon.

Funds for capacity building came from the Center for Haitian Studies, Doris Duke Charitable Foundation, Boston Children’s Hospital Global Health Program, Dana-Farber Global Health Initiative, and the Pierre Fabre Foundation (Paris, France).

The NBS programs are similar in that all of them are hospital-based and are staffed by Haitians, all use dried blood samples, and all have either pediatricians or hematologists to observe the identified children.

The NBS programs also have differences such as different screening methods (isoelectric focusing at HUM, dual method with isoelectric focusing and point-of-care device [Sickle SCAN] at HUJ, and capillary electrophoresis at St Damien). HUJ hired nurses to perform the screening, and other hospitals work with nurses already staffed at the maternity wards. HUJ and HUM have community health workers to help with tracking children, and the other hospitals do not.

Table 1 shows NBS results. Sickle SCAN (a point-of-care device) is one of the tests performed as part of dual screening (Figure 1). It simplifies identifying children with SCD because children are identified at birth, and pediatric referral and penicillin prophylaxis can be initiated immediately.

We are in the process of validating Sickle SCAN readings against IEF. Networking activities are ongoing. We formed the Haiti Sickle Cell Interest Group, which meets every month via Skype to discuss capacity building measures. This group has 33 active members, including patients, community advocates, Haitian pediatricians, hematologists, and other health care providers from the United States and Canada. Several members plan to screen children and adults for SCD (not newborns) and are looking for capacity building. Government officials from the Ministry of Health and the Société Haïtienne de Pédiatrie have been invited to participate.

1. Make SCD a national priority in Haiti so that funds can be allocated for NBS (Figure 2).

2. Provide penicillin for children on an ongoing basis (purchasing or manufacturing penicillin). Currently, oral penicillin is not available in Haiti unless it is brought from the United States or other countries.

3. Provide pneumococcal conjugate vaccine (PCV13 [Prevnar 13]) as routine vaccination for all children in Haiti. PCV13 became part of the national vaccination program on October 29, 2018.

4. Continue capacity building with education and laboratory training.

5. Raise awareness and facilitate processes conducive to NBS and other supportive care. A document on these subjects was written by the members of the Société Haïtienne de Pédiatrie; it was based on data from the HUJ group and was presented to the Ministry of Health along with discussions with Haitian pediatricians.

SCD is prevalent in Haiti. Hospital-based NBS programs are feasible for addressing this problem. Immediate results with the point-of-care device (Sickle SCAN) helps identify children who might have SCD. National support is sought to make NBS sustainable, based on data gathered from NBS screening.

Conflict-of-interest disclosure: The authors have no conflicts to disclose.

Correspondence: Rony Saint Fleur, Hôpital Universitaire Justinien, Cap Haitien, Haiti; e-mail: ronysaintfleur@hotmail.com.