Kisumu County Governor’s spouse Dorothy Nyong’o Friday flagged off a 3km procession from Kisumu County Referral Hospital (KCRH) to Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) to create public awareness on how to combat and achieve zero Sickle Cell infections in the area.
Jaramogi Referral Hospital CEO Dr. George Rae said that together with their partners, they have rolled out a multi-faceted approach to heighten awareness among society to fight this debilitating disease, during this Sickle Cell Awareness Month.
“Sickle cell disease is a genetic condition brought by two people having the carrier gene of it and transmitting that gene to a newborn that begins to suffer. It is an altered state of the red cell, which in itself results in a lot of pain,” Rae said.
This affects bone, brain, heart, fingers and toes and creates crises of the intestines among the patients who experience excruciating pain, thus making them seek continuous pain relief and treatment of other complications from the hospitals.
“The Sickle Cell Zero Movement by 2040 has been set up with all partners and social groups members, who themselves have undergone the conditions and they are called Sickle Cell champions,” said Rae, while adding that the initiative will help in comprehensively addressing the disease-related issues.
Consequently, he observed that pain and life-worsening conditions will be sorted out and they will increase the complexity of treatment and bring in advanced treatment.
To prolong the life of Sickle Cell patients beyond five years, the CEO explained that advanced technology will offer Bone Marrow transplants, Stem Cell Therapy, Immunotherapy and Exchange Transfusions.
“We are going to have a strong movement to eradicate Sickle Cell through Genetic Counseling so that the long-term effects of 15-20 years would be identifying couples to know their health status and help them decide not-to-have children if they are both gene-carriers,” Rae said during an interview at KCRH.
He said that the condition is predominantly in malaria-infested areas like Nyanza, Western and Coast regions and spreads across most of the African countries.
In a counterproductive Medicare move, JOORTH has set up a Newborn Screening Machine to ensure that all children born at the facility are adequately screened against the disease to know their status.
“They are significant numbers within Kisumu County, but we talk of about 300,000 people affected globally,” Rae said.
Millicent Omullo, 29, a Sickle Cell warrior and advocate, a filmmaker by profession, lauded the JOOTRH management for organizing the sensitization program and their continued medical support to the patients.
“Sickle Cell Zero Movement means that we are going to stop the birth of children by getting people to be tested before marriage and the surviving patients to take a leading role as champions in advocacy,” Omullo said.
She revealed that with other stakeholders they are working on a Sickle Cell Policy, with the hope that through proper legislation, the bill will be passed by both the County and National Assemblies.
This, she says, will also give churches the mandate to carry out not only HIV tests, but also Genotype tests for patients to know their status to help stop the pain.
Omullo, a member of Sickle Cell West-Kenya Group, recounted her difficult life ordeals, citing that she has suffered a left mild stroke due to the disease.
“I was diagnosed at three years of age and I have been at the forefront to let people know about my condition and champion the sensitization and awareness campaigns,” she said, further urging the public to stop stigmatizing the warriors living with this disease.
She advised the sicklers who have genetically blood disordered to ensure that they have health insurance coverage like NHIF to cushion them on affordable medication and encourage them to rise up in order to achieve their desired dreams.
Through NHIF Cards, JOORTH has been able to give us free drugs and appealed to the county government to help them in budgeting like CIDP 3 which is coming up, where they request for inclusion and to debate sickle cell.
“We face challenges like job discriminations, lack of finances to treat the disease, severe pain and attacks,” noted Omullo, adding that to combat this, they usually require Hydroxyurea, a very expensive drug which is not readily available in the hospitals that helps to increase fetal hemoglobin and decrease the number of attacks.
Rae further said they normally organize warrior’s conferences and invite people living with sickle cell to encourage their parents and caregivers to support their children to overcome the challenges that come with the disease in order for them to live a long fruitful life.
A consortium of organizations like Kenya Red Cross, Tumaini Sickle Cell Anaemia Organisation, Maisha Project and Child Care are sensitizing the public on the need to have formed multi-sectoral support groups to bring together the sicklers in order to open up and talk freely, while in order to end stigma and at times we provide psychosocial therapy to curb stress, depression and anxiety among them.
Rae reiterated that the hallmark of the walk-in procession and planned events with the partners will climax at JOOTRH celebrations centre, where lectures from the medics and testimonials from the warriors will take centre stage.
By Rolex Omondi