SUSTAINABLE SOLUTIONS FOR SICKLE CELL DISEASE.

SUSTAINABLE SOLUTIONS FOR SICKLE CELL DISEASE.

By Beryl Okendo.
Bone marrow transplant as a solution to the treatment of sickle cell disease is a practice that is yet to gain ground not only due to limited human resources to perform it but also the issue of affordability and accessibility of the treatment to patients.
In Kenya, less than ten bone marrow transplants have been done since the practice was first launched in the country.
With the increase of sickle cell cases diagnosed each day, there is a need to broaden the scope of the mode of treatment concerning availability, accessibility, and affordability to patients.
Jaramogi Oginga Odinga Teaching and Referral Hospital in partnership with other stakeholders including Tumaini Sickle cell Organization held a meeting with caregivers of children under the age of 12, living with sickle cell disease from across the Nyanza region.
The meeting, whose agenda was Bone Marrow Transplant, was aimed at sensitizing the existence of the same and expounding on its cruciality in dealing entirely with sickle cell disease and bringing hope of affordable treatment and accessibility to bone marrow transplants.
JOOTRH is discussing a possible memorandum of understanding regarding Bone Marrow Transplant (BMT) with Fortis Memorial Research Institute, Haryana through Dr. Dua, who was also present in the meeting. If set up soon, the bone marrow transplant center would bring home affordable and easily accessible treatment for sickle cell disease.
Meanwhile, the caregivers were allowed to access the same bone marrow transplant but this time at a relatively affordable amount.
In attendance was Dr. Vikas Dua; a Director and Head of the Department of Paediatric Hematology, Oncology, and Bone marrow transplant at Fortis Memorial Research Institute, Haryana, India who went into detail about bone marrow transplant.
Dr. Vikas Dua is a renowned Paediatric haemo-oncologist and Bone Marrow transplant specialist in India and one of the leading consultants in the field of paediatric Haemato-oncology and bone marrow transplant. He has over 20 years of experience and has performed many successful BMTs for thalassemia and leukemia cases for children from India, Afghanistan, Iraq, and African countries.


Dr. Dua also specializes in the treatment of Paediatric cancer, Aplastic anemia, and Sickle cell anemia.
Bone Marrow Transplant is a procedure that involves the replacement of the patient’s diseased or damaged bone marrow by infusion of healthy blood-forming stem cells from a viable donor. This procedure is also known as Stem cell transplant. Bone Marrow Transplant can be used in the cure for
According to Dr. Vikas Dua, Bone marrow transplants are generally of two types – Autologous transplant (taking up cells from the patient’s own body) and Allogeneic transplant (taking up cells from the donor’s body). BMT is the only known cure for Sickle Cell Disease. It replaces unhealthy blood-forming cells (stem cells) with healthy ones.
Healthy red blood cells are round and flexible. They move through your small blood vessels and bring oxygen to all parts of your body. With SCD, your red blood cells are misshapen, hard, and sticky. They get stuck in your blood vessels and clog them. This can cause you to have pain, infection, organ damage, low blood count, strokes, and other serious health problems. This leads to life-long morbidity and reduced life expectancy through end-organ damage.
An allogeneic transplant is used for SCD. This type of transplant uses healthy cells donated by someone else to replace the cells that make faulty hemoglobin. These healthy cells can come from a family member (not having any SCD traits) preferably a sibling, a biological parent, or even sometimes a half-sibling.
A sibling who shares both parents with the SCD patient is referred to as a full-match donor whereas a sibling who only shares one biological parent with the patient is referred to as a half-match donor. A full match donor assures the patient of 98% successful treatment, while a half match assures the patient of 85-90% successful treatment.
BMT is a life-saving procedure that assures sickle cell patients of a life without pain and frequent crises.

In the meeting, the modalities of accessing BMT were discussed and later, willing caregivers were tested for the viability of donation. Matters arising from payment and travel were also discussed. Having health insurance was stressed and caregivers who were interested in BMT were noted and a follow-up would thereafter be done to look into the requirements that are to be met before the procedure is done.
BMT is a health solution that has gained very minimal roots in Kenya. There is a minimal human resource with the know-how on the practice and hence there has been less attention given to it.
This makes it a concern and an issue that requires intervention by the stakeholders in the health sector. Even with the constraint of minimal human resources and practice, JOOTRH is determined to make BMT a reality. JOOTRH envisions a sickle-cell-free nation. A sickle-cell-free people. While acknowledging the fact that actualizing this vision will need time and determination, JOOTRH is willing to go all the way.
JOOTRH being a Regional Referral Facility receives referrals from both public and private hospitals within Kisumu County and neighboring counties. Acute complications of sickle cell disease also prompt referrals to JOOTRH, where a team of pediatricians and medical officers are often directly involved in the care of these patients.
The Tumaini Sickle cell Foundation in collaboration with JOOTRH set up psycho-counseling for sickle cell warriors and their caregivers. JOOTRH pediatric outpatient clinic for sickle cell disease also runs every Wednesday where long-term care for children (0-13yrs) living with sickle cell disease is instituted.
The burden of Sickle Cell Disease within the lake region has ignited an urge to take action and is the reason why JOOTRH in collaboration with the County Government of Kisumu and other stakeholders has taken the initiative to organize a one-of-its-kind conference dubbed ‘The Inaugural Conference on Sickle cell and Haemophillia’; which will be looking into the issue of sickle cell and hemophilia diseases, majoring on the stumbling blocks that hinder diagnosis, treatment, and management of the menace.
A journey of a thousand miles begins with a step and JOOTRH in partnership with different stakeholders is more than determined to go down that road and ensure that SCD is fully eradicated and combatted.

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