Renewed hope in the fight against sickle cell disease

Health CAS Mercy Mwangangi during the launch of a newborn sickle cell screening centre in Kisumu. 

What you need to know:

Kisumu has set up a centre to manage the disease through collaborative agreements.

It will focus on awareness creation about the disease, education, community engagement, advocacy, capacity building and training of health workers. 

In March 2018, Mr Bernard Otieno and his wife were blessed with their fourth born daughter, Trever Annete, at Nyabondo health centre in Kisumu County. 

The baby appeared bubbly and healthy.

However, trouble began when she turned nine months old. 

“She would cry a lot at night and her eyes were often swollen, “says Mr Otieno. 

On sensing that something was amiss, her parents took her to Nyabondo Hospital, where doctors confirmed that she had sickle cell. 

The news came as a shock to the parents, who had lost two other children to the blood disorder disease. 

Their first born son had been diagnosed with sickle cell at nine months and died at the age of five after suffering from a series of stroke and pain attacks.

Their second born daughter, born a few months after the death of the first born, developed cataracts in her eyes when she was barely one-year-old. 

Her parents took her to Sabatia eye Hospital in Vihiga, where she received medication. But her condition kept deteriorating and just like her brother, she was diagnosed with sicke cell at 10 months. 

Three months after her eye treatment, she could hardly see clearly. Her condition was now a major challenge and she died after falling in an open well due to poor eyesight. 

Fast forward to 2018,  Mr and Mrs Otieno, whose wounds of losing two children had not healed,  were taken by surprise after their daughter was diagnosed with sickle cell —  this was the beginning of yet another painful journey. 

After diagnosis, Trever was placed on the daily hydroxyurea drugs, which cost the family Sh40 per day. 

During their last hospital visit at Bondo Sub-county Hospital, the doctors advised that Trever should undergo a bone marrow transplant, which would be a permanent solution to her hospital visits. 

According to Mr Otieno, the family requires at least Sh5 million to cater for the services in India. “Time is moving really fast and my hope is that someday we will raise enough funds to settle her hospital bills so she can live a normal life just like other children, “says Mr Otieno. 

Trevor is among the 3,000 children born annually in Kisumu County with the sickle cell disease (SCD), which is half the national population. 

Statistics show that  a total of 21 out of 100 children in  the county  are born with the sickle cell trait. 

The disease is an inherited blood condition that is passed down to a child through the parents’ genes. 

It then results in the production of abnormal red blood cells that are inflexible, sluggish and do not pass through the blood channels; thus interfering with the oxygen supply to the entire body. 

The World Health Organization estimates that more than 300,000 babies are born yearly in Sub-Saharan Africa with SCD.  In Kenya, approximately 6,000 infants are born with SCD while 80 per cent of them die before their fifth birthday. 

The counties burdened by the disease include Kisumu , Bungoma, Homa Bay, Kakamega, Siaya, Nairobi, Mombasa, Taita Taveta, Kilifi, Kwale, Migori, Busia, Vihiga, Kisii, Nyamira, Uasin Gishu and Trans Nzoia. 

Kisumu alongside other lake region counties burdened with malaria is the epicentre of SCD and carries the biggest burden of more than 80 per cent. 

Dr Walter Otieno, a paediatrician and health researcher,  says malaria has adverse effects on patients suffering from sickle cell anaemia and may lead to untimely deaths. The SCD carriers, however, may suffer from mild effects of malaria that may even go unnoticed. 

“The sicklers often suffer from a number of symptoms including low blood supply, a series of attacks and constant pain, which often maximise whenever one suffers from the parasitic disease,” says the Maseno University lecturer. 

Kisumu acting Chief Executive Director for Health Gregory Ganda says 21 out of 100 children born in the county annually have sickle cell strain. 

The disease has also continued to be a major challenge to western region counties bordering the lake. 

Weak infrastructure for early diagnosis of SCD and comprehensive management has been a major barrier towards care and treatment of the disease 

Other challenges hindering efforts towards  management of the disease include lack of awareness, and proper equipment coupled with the high cost of medication. 

“This has in turn seen most patients, mostly children and young adults, die prematurely “says Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) Chief Executive Officer George Rae, who emphasises the need for early screening and diagnosis to ensure survivors lead a normal life. 

According to Dr Rae, the regional hospital often has at least three to five cases of SCD attacks at its emergency room every week.

The alarming cases in the region have pushed Kisumu to set up a centre to manage the disease at JOOTRH through collaborative agreements with the American Society of Hematology , Perkin Elmer-Finland, Norvatis Pharma and other African countries that have interest in sickle cell disease.  On December 7, the county with the partners launched the Newborn Sickle Cell Disease Screening Centre for management and control of the disease. 

It will focus on awareness creation about the disease, education, community engagement, advocacy, capacity building and training of health workers. 

“We will also explore opportunities to make hydroxyurea available and accessible in Kenya to all patients,” said Mr Anthony Mwangi, Norvatis cluster head. 

“The partnership will also focus on collaborative partnerships to make diagnosis, including screening of SCD, available, accessible and affordable in Kenya’s health systems and thus strengthening the research.”

While presiding over the launch, the Ministry of Health Chief Administrative Secretary Mercy Mwangangi insisted on the need to ensure sickle cell disease interventions are available at the primary health care levels to aid during a crisis.