by Lorraine Anyango
Jaramogi Oginga Odinga Teaching and Referral Hospital (JOORTH) is pushing for a comprehensive approach to eradicate sickle cell disease including compulsory couple testing for sickle cell trait before marriage.
The facility which manages the highest number of sickle cell cases in Kenya has picked a business unusual approach that will see to it that the office of the Attorney General, the Church, and the Hospital work together towards zero sickle cell in Kisumu.
This new move goes beyond providing state-of-the-art treatment but also pushes for the prevention of the disease by lowering the number of sickle cells through genetic counseling as one of the most effective ways to eradicate the blood disorder.
This move is likely to birth a policy that once ratified will change the sickle cell scenario in the region allowing couples to make informed decisions and reduce largely on the prevalence of sickle cell.
This move intends to address the long-term commitment to eradicate sickle cell disease hereditary or genetic disorders which affect many people in the western part of Kenya.
Speaking passionately about the new move, Dr. George Rae, the CEO of JOOTRH emphasized that commitment must be done to eradicate unnecessary death as a result of sickle cell in the region.
“We are convinced that this new approach will provide a lasting solution, however, we provide the best treatment to address complications of sickle cell by making available hydroxyurea and penicillin.” Dr. Rae said.
He added that the facility advises parents to provide good nutrition and hydration and to prevent malaria at all cost
“You must present a certificate on the sickle cell traits, we will ensure that couples with these straights do not get paired, though couples are in love we will advise that they get other partners to avoid bearing children with the inherited disease.” Dr. Rae said.
He said that the facility will embark on serious and consistent couple testing and counseling, “Daily we have children at the casualty suffering from sickle cell, and the number of deaths from this condition continues to sour, we must do something to avert this trend.” Dr. Rae said.
Upon realizing the urgent need to develop a Comprehensive Center to deal with sickle cell, the facility has partnered with the City of Hope, a leading Hematopoietic stem cell transplantation (HSCT) in the USA.
This comes after Kisumu’s Governor Prof. Peter Anyang’ Nyong’o visited the hospital in the USA.
Through this partnership, JOOTRH will train doctors who are seeking to specialize in sickle cell management and born marrow transplants.
Comprehensive clinical care programs have reduced premature childhood deaths related to sickle cell disease by 70% in the USA
Unfortunately, sickle cell disease mortality in adults has not decreased in the last 30 years because of acute and chronic end-organ damage.
High disease prevalence in sub-Saharan Africa positions this region to take a lead on comprehensive sickle cell disease globally.
In a joint paper presentation, during the blood conference in Nairobi, two weeks ago, Dr. Rae together with Dr. Charles Otieno the MD of MPH (USA) said that JOORTH is aiming for the HSCT center to be financially self-sustaining through research collaborations, private health care, and outreach programs as well as education and training.
The duo underscored that this HSCT will be anchored on Universal Health Care program through NHIF, which will eventually aid local and international patients in avoiding travel expenses abroad while seeking similar care
Already the facility is drafting proposals to secure funding for the project through international development programs and financing from the private sector (e.g. pharmaceutical and laboratory companies).
JOORTH already started working towards the development of a comprehensive center, currently, it is benefiting from a pilot project in Kenya by the American Hematology Society Consortium for newborn screening program in Africa (CONSA).
JOOTRH and Maseno University are also developing an agenda to establish the first Comprehensive Sickle Cell disease Management center in Kenya.
This network seeks to demonstrate the benefits of newborn screening and early interventions for children with Sickle Cell Disease (SCD) in sub-Saharan Africa.
According to Dr. Bernard. O. Awuonda, a Paediatrician and CONSA Kenya Lead, Screening commenced in late October 2021 after the official launch on December 7th, 2021.
“The number of babies so far screened for SCD stands at 5594, about 103 that is about 1.9% of those screened were found to be positive.” Dr. Awounda said in a report presented to the JOOTRH executive.
He added that those with sickle cell traits were 1055 making up 19% of those screened, those who needed clinical follow-up and have turned for the first visit are 54, and those who showed up for the second visit were 18.
Of those tested there have been three deaths from those who declined to follow up, two of these happened at JOOTRH due to respiratory infection while the other was at a level one peripheral facility was due to fever and sepsis.
“We need more engagement with community for buy-in, as well as community leadership, including community health workers (CHWs, we need health education campaigns to carried out in various mediums including the mainstream, media, posters, and bill-boards among others.” Dr. Awounda said.
He added that there is a need to provide incentivized care as well as subsidize the cost of treatment including offering drugs for free, enrolling into NHIF and other medical insurance for a comprehensive package of care as well as deploying POC -Sickle scan, chemotype SC, among other interventions.
“We should mainstream & integrate into the health care system, the NBS as part of routine care, including in mother-to-child booklet, and explore and avail other treatments, in addition to hydroxyurea, Oxbryta (voxelotor), crizanlizumab, BM/ stem cell transplant and gene therapy or gene editing.
Phase two of the comprehensive care entails screening with ultrasound Duplex & Apheresis/ Blood Exchange program while phase three will entail hematopoietic stem cell transplantation (HSCT).
The JOOTRH’s HSCT Program has factors including training and partnerships, financing HSCT services, identifying donors, stem cells, and blood products, pharmacy, diagnostic and radiotherapy Services, infrastructure, quality assurance, and standards.
One of the key components of HSCT is improving the availability of blood products and developing the capacity for blood irradiation, stem cell collection, processing, and storage.
These requirements pose significant problems due to their lack of availability and cost. Concerning blood products, JOOTRH is a partner with the Ministry of Health to increase its capacity for providing blood products.
JOOTRH will develop a stem cell registry for sickle cell disease (SCD) patients and related and unrelated donors
It is estimated that over 300 000 babies are born each year with the disease worldwide, with nearly 75% of these births in sub-Saharan Africa.
Despite this high incidence, established life-saving public health programs for sickle cell disease have not been implemented in most African countries.
Childhood mortality due to the disease remains high and estimates suggest that, without interventions, up to 90% of individuals with sickle cell disease in Africa will not reach 18 years of age.
The World Health Organization and United Nations have designated SCD as a global public health problem.