Kisumu county government has rolled out a model strategy to reduce sickle cell disease burden in the county.
Governor Anyang' Nyong’o said the initiative aims to fill the gap in comprehensive SCD care by setting a model that can be replicated in other high-burden regions.
Nyong'o said the initiative is expected to be implemented alongside Kisumu Comprehensive Cancer and Haematology Centre (KCCHC) by leveraging on shared technologies, expertise and equipment for both SCD and cancer interventions.
Sickle cell anaemia prevalance in Kenya is estimated at 1-4.5 per cent, meaning every 1 to 20 children have the condition with the sickle cell trait prevalence ranging from 5-30 per cent.
Studies in Western Kenya show a high birth prevalence of SCD, with a high mortality rates of between 50-90 per cent, meaning five to nine out of every 10 affected children die before celebrating their fifth birthday.
At Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) in Kisumu, data reveals that those who survive to live with the disease suffer an average of five crises annually, each requiring at least 5 -10 days of hospitalisation.
This contributes to significant economic burden for affected families.
"It is against this backdrop that Kisumu county has opted to commence initiatives to address this problem," Governor Nyong'o said in a speech read on his behalf by Health CEC Gregory Ganda.
Nyong’o noted that they have collaboratively achieved a major milestone like the establishment of a stand-alone multidisciplinary SCD Clinic at JOOTRH offering preventive, promotive and therapeutic services, including psychosocial support, nutritional counselling and medication.
He also highlighted collaborations with the American Society of Hematology (ASH), Perkin Elmer-Finland, Novartis Pharma and other African countries to widen the scope and quality of care and treatment services available in the region.
"Membership of Kenya in the Consortium of Newborn Screening in Africa (CONSA) in January 2020 has benefited us with resources like the Migele gel electrophoresis machine for newborn screening and shared experiences through an annual colloquium," Nyong'o said.
As a result, the governor noted that newborn screening and early interventions begun in JOOTRH two years ago and so far, over 20,000 children have been screened.
Nyong'o was happy to note that they have five years worth of supplies for the programme.
"We are positioning JOOTRH as Regional Centre of Excellence for SCD care, training, research and comprehensive care, having signed an MOU with Fortis hospital for technical support."
He added that all these efforts can only be impactful if they address the residual challenges that they continue to experience.
Nyong’o noted that there is need to double advocacy, awareness creation and health education efforts to combat the stigma and discrimination associated with SCD.
"We must remind citizens that the disease is fully manageable with a good outlook, that persons can live a fulfilling life all the way into adulthood."
He added that they must identify and support the SCD survivors and champions to marshall patient support groups to speak about their experiences and to tell their stories of hope and conquest and encourage those affected to embrace the journey with hope and courage.
To policy and decision makers entrusted with health matters, Nyong’o noted the need to recognise SCD as a major public health issue and provide budgetary allocation to support all efforts along the continuum of advocacy and comprehensive care.
"We propose to have SCD singled out and mentioned in the curative health programme budget both at the national and county level," Nyong'o said.
He added that both levels of government need to collaborate to ensure the availability of essential drugs and most notably paediatric-friendly formulation of hydroxyurea.
"We must coalesce together and agree on modalities on making this life-saving medication available in pharmacies in the affected regions and at an affordable cost," he said.
As a first step, Nyong’o said he was delighted that the new Social Health Authority has included screening and treatment of SCD under the Social Health Insurance Fund (SHIF) and the Emergency Chronic and Critical Illness fund.
