By Nancy Juma
The County Government of Kisumu has launched a Sickle Cell Disease Newborn Screening and Early Intervention Project as well as a Comprehensive Care Center at Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) to respond to the high burden of the condition in the region.
The Center of Excellence launched today by the Cabinet Administrative Secretary for Health and Sanitation, Dr. Mercy Mwangangi alongside Kisumu Deputy Governor Dr. Mathew Owili, will be the first of its kind in the country and is positioned to serve patients suffering from sickle cell anemia and other blood disorders from Kenya and the region.
In Kenya, it is estimated that 6,000 children are born with the disease. However, between 50 to 80 per cent of these children die before their fifth birthday. Kisumu is among 17 priority counties with the highest burden of SCD implementing the National Sickle Cell Disease Program sponsored by Novartis in partnership with the Ministry of Health.
Already, the County Government has signed an agreement with Novartis on the fight against the disease. Kisumu County, where 21 out of 100 children are born with SCD, is earmarked to be the Index County of Implementation for the National SCD Program anchored under the five-year MoU between Novartis and the Ministry of Health (2020 – 2025). Speaking at the launch, CAS Dr. Mwangangi was impressed with the work being done in Kisumu and thanked H.E Governor Nyong’o for being a thought leader and partner of the Ministry of Health. She applauded the Kisumu Health Management Team for taking stewardship and ownership in putting together the program.
According to Dr. Mwangangi, efforts need to be put in Sickle Cell Disease due to its high burden in the country. “There is need to ensure that Sickle Cell Disease Interventions are available at the primary health care level”. Mwangangi noted In response to a Call to Action by Sickle Cell warriors in terms of medicines, technology and community interventions, Mwangangi highlighted that the ministry is exploring the establishment of a SCD Register and Electronic Medical Health Records System as well as embarking on rigorous training for health workers to enable them provide the much-needed care.
On medication, she reported that the SCD medication Hydroxyurea has already been included in the essential medicines list in KEMSA. “We recognize that this is not enough and we need to do more with partners like Novartis to see how we can explore reducing the costs of these medications”. She said She also noted that the ministry shall continue with consultations with the National Hospital Insurance Fund (NHIF) to ensure that SCD Screening is adequately covered in addition to seeking ways to ensure the kits are availed to the patients in a sustainable manner.
Speaking on behalf of Kisumu Governor H. E Prof. Anyang’ Nyong’o, the Deputy Governor Dr. Mathew Owili said newborn screening will go a long way in saving the lives of children afflicted by the disease through early and targeted interventions. “The project will help early diagnosis and prompt treatment of the disease”. Owili said According to the World Health Organisation, each year, more than 300,000 babies in sub-Saharan Africa are born with SCD.
However, many do not live past the age of five because they lack access to testing, comprehensive clinical care, and early intervention programmes. Dr. Owili expressed that Kisumu is one of the counties with the highest burden and that the project has put Kisumu on the global map as the County is witnessing unprecedented level of collaboration across the innovation ecosystem to address the global health crisis.
To help reduce the high costs of medicines by the caregivers, Dr. Owili directed the County department of Health to look into ways of ensuring that SCD patients get the desires they need by reducing the costs of medications they need out of County facilities. To strengthen the partnerships and access to pharmaceuticals, Dr. Owili mentioned that the County has also brought on board Maseno University and Great Lakes University of Kisumu which will offer critical support in terms of research and training. The County Ag.
Minister & Chief Officer for Health and Sanitation Dr. Gregory Ganda on his part revealed that the center is earmarked to be the regional center of excellence for SCD care to offer training, research, and comprehensive care experience. Key areas of focus in the National program include; awareness creation, education and community engagement, advocacy and capacity building and training of healthcare workers. This is in addition to exploring opportunities to make Hydroxyurea (HU) available and accessible in Kenya and to make medications related to care of sickle cell available and accessible to all patients. It also focuses on collaborative partnerships to make diagnosis including screening of SCD available, accessible, affordable and sustainable in Kenya.
The project is supported by various partners including American Society of Hematology (ASH) and the Perkin Elmer of Finland Other counties to benefit from the programme include; Bungoma, Kakamega, Siaya, Nairobi, Mombasa, Taita Taveta, Kilifi, Kwale, Migori, Busia, Vihiga, Kisii, Nyamira, Uasin Gishu and Trans Nzoia. Joining the CAS for the launch were Prof. Kama Rogo, the Chair for Mama Grace Onyango Foundation, a key partner in the program, JOOTRH CEO Dr. George Rae, Representatives from other partners including; NDC Alliance, AMPATH, Beyond 5, ASH, Perkin Helmer and the County Health Management Team.