The Kisumu County Government has launched a Newborn Sickle Cell Screening Centre at the Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) to respond to the high burden of the sickle cell disease condition in the area.
Through partnership with American Society of Hematology(ASH), Perkin Elmer-Finland, and Consortium On Newborn Screening in Africa (CONSA), the county managed to get a package that includes screening equipment to begin newborn screening (NBS).
The new equipment which will be used for screening of newborns has been placed at the Obama children hospital at the JOOTRH and is worth Ksh 6 million (about USD 60 000).
According to the Head laboratory technician, Dr Hezron Oketch, the equipment, which is the first of its kind in this country, will allow early diagnosis and interventions that will prolong, and improve the quality of life(QoL) of children.
He says the diagnosis takes at most two hours compared to the earlier manual one which could take 24 hours.
The medic says they receive at least 100 samples from children aged between one day to eight weeks old from various health facilities within the county.
The goal of this initiative will be to provide screening of newborns for early detection and treatment of sickle cell anemia and other blood disorders in the county.
According to the project coordinator Dr Bernard Awuonda the Sickle Cell Disease project is anchored on the Kisumu Comprehensive Cancer and Blood Disorders (KCCB) grand project.
Dr Awuonda says Sickle Cell Disease (SCD) is an inherited condition that is passed down to a child through parents’ genes.
He says the disease results in the production of abnormal Red Blood Cells that are inflexible, sluggish and do not easily pass through the small blood channels.
“Red Blood Cells carry and supply oxygen to the body. Therefore, with SCD, the body tissues and organs do not get sufficient supply of oxygen,” he says.
The coordinator says that According to the World Health Organization (WHO), more than 300000 babies yearly born in Sub-Saharan Africa (SSA) have SCD. Kenya’s and Kisumu’s proportions are yearly estimated at 6000 and 3000 respectively.
He says out of 100 children born in Kisumu County, 20 are diagnosed with sickle cell disease (SCD).
The medic says many of the babies with SCD do not see their fifth birthday because there is weak infrastructure for early detection and comprehensive management of the disease where reports indicate that 80% die within 5years of birth.
He says the biggest challenge in managing the problem is high cost of drugs and the many effects that come along with the SCD.
The doctor says some of the problems which come along with the disease are stroke, paralysis, blindness and general organ failure coupled with stigma.
“Kisumu County along with the Lake Region Counties (LREB) is the epicenter of SCD and carrying the biggest burden of more than 80%,” he says.
“The county therefore has a leadership responsibility in SCD management and control in the region. The other affected counties outside LREB are the coastal counties.”
He says the Kisumu County Government has been working on the NBS component of SCD management and control for the last 3 years.
Dr Anthony Mwangi, Cluster Head (EA), Novartis, says they are working on more affordable drugs for people living with SCD.
Dr Mwangi says they are also working on a once monthly injectable drug in order to ease the burden of drug administration to patients.
He says there are still challenges in diagnosis hence the low figures of patients.
“We are pleased to have signed the important agreement with the Ministry of Health as part of our commitment to supporting the care and management of SCD, we will ensure that the project launched here today impacts greatly on the lives of children suffering from SCD through sustained training of skilled healthcare professionals and availability of the requisite medication at all times,” he says.
Chief Administrative Secretary Ministry of Health (MOH), Dr Mercy Mwangangi, says the project is a partnership between the County Government and Novartis East Africa
Dr Mwangangi says data and information are an important part of dealing with sickle cell, therefore, the MOH is exploring the establishment of a Sickle Cell Disease (SCD) register and an electronic medical health record system.
She says the data would help the ministry to account for and allocate resources for sickle cell management and treatment.
The CAS states that they would embark on rigorous training of health care workers in the sector to ensure they were able to provide the needed interventions and care.
“I would also like to take note of the medication issue. We’ve heard from our partners from America that there are pediatric formulations that are coming our way. It’s a challenge for us as a ministry to ensure that these formulations are available,” she says.
She recognizes that the MOH together with partners need to do more for sickle cell patients, caregivers and warriors in terms of medication and newborn screening.
Dr Mwangangi assures stakeholders that sickle cell interventions would be made available at the primary level especially the health centers at sub-county and grass-root levels.
The CAS says that hydroyurea, used to treat sickle cell anemia will be listed as one of the essential drugs in the country.
She calls upon the Ministries of Health and Education to partner through the school health programme in sensitizing teachers on sickle cell disease and how to handle those affected.
The executive committee member for health Kisumu County Government Dr Gregory Ganda, says they spent Sh100 million on health infrastructure last year adding that they have set aside Sh50 million to improve the sector this year.
He says they were interested in a sustainable partnership as a department and lauded Novartis and other partners for the help they had rendered the department so far.
Kisumu will also benefit from the National SCD Program sponsored by Novartis in a partnership to be implemented in 17 priority counties with the highest burden of SCD.
They are: Kisumu, Bungoma, Homa Bay, Kakamega, Siaya, Nairobi, Mombasa; Taita Taveta, Kilifi, Kwale, Migori, Busia, Vihiga; Kisii, Nyamira, Uasin Gishu, andTrans Nzoia.
Novartis has Key areas of focus in the National SCD Program including: awareness creation, education and community engagement, advocacy and capacity building and training of healthcare workers.
Others are to explore opportunities to make Hydroxyurea (HU) available and accessible in Kenya and to make medications related to care of sickle cell disease available and accessible to all patients.
The MoU also focuses on collaborative partnerships to make diagnosis including screening of SCD available, accessible, affordable and sustainable in Kenya, health systems strengthening and research .
So far, the notable achievement under the MoU framework has been the preparation and finalization of the inaugural National Guidelines for Management of Sickle Cell Disease. The guideline titled Sickle Cell Disease Control and Management and launched in August by the Ministry of Health is expected to ensure people living with the condition receive quality and affordable care. Through this guideline, the government has pledged to provide basic treatment medication required by patients like folic acid, hydroxyurea, vaccines, and analgesics for pain management.