“When I first heard about the RBCx procedure being conducted at JOOTRH in collaboration with Nairobi West Hospital, I was amazed—I wanted to be one of the first to undergo the procedure,” Michelle expressed with a broad smile.
JOOTRH, Kisumu, August 8th –Michelle Omullo, a 32-year-old sickle cell warrior, radiated joy and relief after undergoing the first successful Red Blood Cell Exchange Procedure (RBCx), a groundbreaking achievement for the greater Nyanza region.
As a patient and champion, this procedure represents an act of courage, hope, and advocacy for those affected by sickle cell disease.
Michelle embodies Martin Luther King Jr.’s famous quote: “Take the first step in faith. You don’t have to see the whole staircase, just take the first step.”
The significant medical breakthrough was made possible through a collaborative effort between the Jaramogi Oginga Odinga Teaching and Referral Hospital’s Victoria Annex Sickle Cell Disease Management Centre (JOOTRH) and Nairobi West Hospital.
Initiative’s Goals
The innovative treatment aims to reduce the number of sickled red blood cells, which have a banana shape, in the body of a sickle cell patient, replacing them with normal round-shaped red blood cells.
Medical experts explain that sickled cells struggle to move efficiently throughout the body, hindering proper blood flow and increasing the risk of complications such as severe pain crises, stroke, anaemia, and infections.
This can lead to damage to vital organs, including kidney failure and risks associated with pregnancy in individuals with Sickle Cell Disease (SCD).
When The Eyes Watch caught up with Michelle at Victoria Annex a day after her operation, she shared her journey.
She narrated that she was diagnosed with sickle cell disease in 2003 at the age of three. Michelle recalled, “My mother noticed my yellowish eyes, which didn’t surprise her since my aunt from my father’s side also had them.”
Since then, she has suffered two mild strokes, in 2010 and 2013, which require ongoing monitoring, along with numerous pain crises.
What are the statistics?
According to the World Health Organisation (WHO), about 7.74 million people were living with sickle cell disease as of 2021, accounting for 80 percent of cases in sub-Saharan Africa.
This statistic equates to approximately 515,000 babies born with the condition, which is a leading cause of mortality in children under five, resulting in 81,100 deaths in 2021.
African Map Showing the Distribution of S Gene
Sickle cell disease is the 12th leading cause of death in this age group. In Kenya, about 14,000 children are born with SCD annually.
Her Motivation
“When I first heard about the RBCx program being conducted at JOOTRH in collaboration with Nairobi West Hospital, I was amazed—I wanted to be one of the first to undergo the procedure,” Michelle expressed with a broad smile.
She had heard positive testimonials from friends who had benefited from RBCx.
“One male friend told me his frequency of pain crises stabilised, while a female friend experienced a significant decrease in her crisis occurrences,” she said.
Encouraged by this news, Michelle thought, “Mimi pia naweza fanya hii kitu nikuwe mzima zaidi (I can also do this and get better).”
She shared her desire to undergo the procedure with the doctors and nurses at JOOTRH and Nairobi West Hospital.
However, her mother was initially hesitant, saying, “I think it’s not good for you because it’s something new.”
After explaining the procedure to her family, they accepted it and prayed for her.
Their support inspired her, but she hadn’t renewed the Social Health Authority (SHA) insurance coverage for the whole year.
“I told them I was waiting for one of my sponsors to pay Sh 7,200 for the whole year. Fortunately, the JOOTRH doctors pooled their resources to cover my entire annual subscription,” she noted.
Michelle arrived at the hospital on Tuesday and completed her last routine tests on Saturday to confirm her eligibility for the procedure.
“We were supposed to be two patients, but my male colleague hesitated. I was resolute; there-was-no-turning-back,” she said, reflecting her bravery.
The RBCx Procedure
As a filmmaker by profession (she directed a short film titled Genotype), and wanting to know the scene’s settings, Michelle visited the operating room and was taken through how the specialised apheresis machine works, two days before her scheduled procedure.
Filled with determination, she woke up early on the morning of Monday September 1st, and inwardly affirmed: “This is what I decided to do.”
She arrived at the health facility twenty minutes before her 7am appointment.
“This was my first time being a patient in an operating room, which felt strange at first, but I soon got used to the anaesthetists, who reassured me that everything would be fine,” she described.
The procedure began with the doctors performing an ultrasound to locate the largest veins.
“To accelerate the transfusion, I remember they numbed my left femoral vein and cleaned the area.”
Pointing to the area as she spoke, Michelle explained that the numbing was necessary to prevent any pain during the procedure.
“I felt pain during the insertion of the catheter into my femoral vein, but a few seconds later, I didn’t feel it anymore.”
To assess its efficacy levels, they flushed the catheter, and both the inlet and outlet valves were functioning well.
Michelle continued, explaining that the next step involved suturing her from top to bottom to secure the catheter during the procedure, which was then covered to prevent bacterial infection.
During the blood transfusion, she recalled feeling very cold due to the chilled healthy donor blood cells entering her system.
She confirmed that medical experts closely monitored her vital signs throughout the process to ensure everything went smoothly and safely.
The catheter remained in place for about two to three hours because she had been informed that removing it immediately would cause bleeding, necessitating the restart of the procedure.
According to Michelle, the entire procedure took one hour and twenty-four minutes to complete.
Post Procedure Reaction
“When I came out of the operating room after the procedure, I felt extremely cold and experienced some excruciating pain, particularly in the area where the catheter had been inserted,” she explained, the pain was due to the removal of the catheter.
She noted that the lifespan of a red blood cell (erythrocyte) is 120 days, while sickle cells only last about 14 days.
Michelle assured that once she was given painkillers to alleviate the discomfort, she began to feel better.
“I feel refreshed and much better now. I feel relaxed and no longer experience the fatigue I usually feel every day… It’s gone completely. I feel like I have a new body, and that feeling is wonderful and I’m deeply grateful for the successful procedure.”
Lasting Partnerships
To achieve the Zero Sickle Campaign by 2040, JOOTRH Acting CEO Dr. Joseph Okise expressed his pleasure in announcing their collaboration with Nairobi West Hospital to significantly reduce the number of individuals with sickle cell disease in the Nyanza region and the neighbouring East African Community (EAC) countries.
“These procedures require a significant amount of blood, and we appeal to the public to help save our people,” he urged during a presser before the milestone RBCx procedure.
Dr. Okise stated that individuals covered by SHA who suffer from sickle cell disease can now participate in RBCx through the Apheresis machine process without incurring additional charges.
To facilitate blood donations at JOOTRH, he said they would ensure the centre operates 24 hours a day.
On a sombre note, Dr. Okise highlighted that over 90 per cent of children born with this disease die by their fifth birthday without intervention.
“The RBCx procedure will significantly improve the longevity of those with this disease. Aside from sickle cell, our joint partnership will also encompass cancer treatments and referrals for services such as radiotherapy and chemotherapy.”
Relatedly, JOOTRH has allocated approximately Sh100 million for the construction of a Regional Cancer and Haematology Centre, with other financial support expected from the national government and various partners.
With Dr Okise observing that this will reduce the number of patients who die while waiting for treatments that could save them.
Benefits of RBCx
Nairobi West Hospital Medical Superintendent Dr. Parkash Singh Sagar emphasised that the advanced technology filters the blood and replaces it entirely with healthy blood to improve life quality.
“Your body contains a high volume of sickle cells that, if not replaced, can lead to serious health complications. Many people with sickle cell disease cannot expect to live beyond the age of 30. If they do, they risk complications like stroke due to thick blood, adversely affecting their overall quality of life,” he explained.
According to Dr Parkash, in Kisumu, 2-3 per cent of children are born with sickle cell disease, and each year, the country loses approximately 14,000 children who do not receive proper treatment.
The RBCx procedure, he noted, also enhances survival rates and reduces SCD crises.
He also added that their health facility is a super speciality -one of its kind in the country and across EAC -has successfully conducted 23 bone marrow transplant operations,
Dr Parkash noted that they are working with Terumo BCT, a global company that provides medical technology and insights to empower blood-and cell-based therapies across the globe.
Another partner, CONRAD is a nonprofit biomedical research and development organisation that works to enhance global health through the development of innovative, and user-centered technologies.
In these ways, Nairobi West Hospital has been able to successfully perform 50 RBCx procedures for sickle cell disease.
“This is our corporate social responsibility (CSR) to give back to our society. We are committed to providing this type of health support across the country with the help of the Ministry of Health and the Council of Governors,” Dr Parkash assured.
His counterpart Dr. Boniface Kairu Githaiga, the Clinical Haematologist at Nairobi West Hospital, who led the RBCx procedure, stated that this technology is already being implemented in major hospitals.
Dr Kairu said that SCD is quite endemic in the Nyanza region. Given the statistics, the procedure will be rolled out once, twice, or three times for safety services.
Community Engagements
To adequately address SCD, JOOTRH is implementing several interventions, including Newborn Screening to facilitate early detection and immediate treatment.
Dr Joyce Muyonga, a paediatrician at JOOTRH, shared that they have also initiated a study at Lumumba and Kisumu County Referral Hospitals.
To measure various types of haemoglobin in the blood, a test procedure known as Haemoglobin Electrophoresis is carried out.
The test will detect the presence of Haemoglobin S(HbS), which is abnormal in a person who has SCD, while a carrier (heterozygote), will indicate a mix of normal (haemoglobin (HbA) and haemoglobin S (HbS).
“We have a clinic at Victoria Annex that serves children on Wednesdays, while adult males and females are seen weekly. Additionally, women of reproductive age are seen twice a month,” Dr. Muyonga explained.
She emphasised that this national-level six-hospital has been crucial in achieving positive outcomes for individuals with SCD.
Consequently, JOOTRH is actively engaging with the community by organising caregivers support groups, provision of resources and awareness networks.
They have also lined up a sickle cell awareness and fundraising football match slated on September 27th at Moi Stadium, Kisumu.
“This is meant to assist in registering 200 vulnerable warriors with SHA to access better health care services.”
Hydroxyurea Affordability
According to medical professionals, hydroxyurea offers new hope for patients with SCD, potentially reducing the frequency and severity of painful crises while improving overall quality of life.
But, several reports indicate that many individuals with SCD struggle to afford hydroxyurea.
Michelle, a patient, mentioned that the cost ranges from Sh35-40 per capsule, depending on one’s body weight and individual complications.
“I take mine twice daily,” she shared.
Dr Muyonga also reiterated that hydroxyurea is available for patients, who are SHA compliant.
Fortunately, Michelle avers that Zuwi Afya Community-Based Organisation has always provided support to less privileged warriors by purchasing the medication for them.
This is to enhance the overall well-being of Kisumu’s communities.
This year, Sickle Cell Awareness Month in September is being observed under the important theme “Sickle Cell Matters.”
“Its main role is to raise awareness about SCD challenges, break down stigma, support those affected, and advocate for better access to treatment and care.”
Family’s Appreciation
Michelle’s elder sister, Joy Omullo, expressed their satisfaction with the treatment outcomes and praised the doctors and the two health facilities.
“Initially, we were a bit sceptical when she told us about the procedure. However, after she explained how it works and I read more about the RBCx, I felt confident it would improve her quality of life,” she shared during an interview at JOOTRH Victoria Annex Hospital.
Joy believes that the procedure is a game-changer for individuals with SCD and emphasised the need for increased public awareness efforts.
Words of Encouragement
Michelle’s advocacy for sickle cell awareness spans several years by serving as a Disability Inclusion Facilitator for Light for the World.
As a co-founder, she is also involved in running the West Kenya Sickle Cell Organisation and the Victoria Youth Film Empowerment Group.
She encourages fellow sickle cell warriors considering similar treatment options to meet the eligibility criteria by registering for SHA.
“This initiative brings lasting change and makes a significant difference in our lives as warriors. They should pursue the RBCx procedure and do everything possible to make it happen,” she concluded.
