When Pesila Odongo, a resident of Kendu, Homa Bay County, took her daughter to a local hospital in early 2012, she expected the child to be treated and discharged within no time. Her daughter, Ashley Otieno, then two years old, was exhibiting several symptoms including pain in the toes, swollen limbs, general body weakness and high body temperature. Despite the symptoms being some what worrying, Pesila expected that at the worst, the health care worker would prescribe medication for the child which she would purchase and give to her child as instructed and all would be well.  

Eleven years later, Pesila and Ashley remain constant visitors to hospitals in Homa Bay and Kisumu counties following a Sickle Cell Disease diagnosis on that fateful day.  At least once every month, Pesila and her daughter make the long trip to hospital for a medical check up and to collect medication to manage Ashley’s condition. Sometimes the 13-year-old girl is admitted for better management. 

For the last three years, Ashley has been seeking medical care at Kendu Adventist Hospital which is supported by CHAK to better manage Sickle Cell Disease patients.

CHAK is partnering with Novartis in a health systems strengthening project which is helping both patients and the health facility face and overcome myriad challenges associated with Sickle Cell Disease including stigma and discrimination, psychosocial and emotional challenges, unavailability and high cost of medication and quality of care.

Dr. Kipngeno Langat (left): The biggest challenge in the care of sickle cell patients currently is the cost of hydroxyurea.   Pesila (right): Sickle Cell Disease is a long-term condition that requires support and team work from family, community and government. There is need for awareness and education on the disease.

Dr. Kipngeno Langat, the Medical Officer responsible for management of patients in the paediatrics and the male medical departments at Kendu Adventist Hospital, says the biggest challenge in the care of sickle cell patients currently is the cost of hydroxyurea, an essential drug used to reduce the number of crises an individual suffers, need for blood transfusion and admissions from resulting complications. Due to shortages, patients often have to buy this drug out of pocket, with a tablet going for Ksh50 and above. The number of capsules to be taken depends on the weight of the patient. Failure to take this medication means a patient has to make several trips to hospital.   

Occasionally, there is shortage of blood which is essential for treatment of sickle cell patients who often need transfusion.

The hospital also lacks an Electrophoresis machine used for diagnosis of Sickle Cell Disease and other hemoglobin disorders. The machine measures hemoglobin levels and looks for abnormal types of hemoglobin. Kendu Adventist Hospital refers patients to Homa Bay county Referral Hospital for these services. This increases the time taken for a sickle cell diagnosis and accessing services, negatively affecting treatment outcomes. Additionally, the cost of treatment is increased by the additional transport needs of the patients and their caregivers.  

To overcome some of the challenges associated with managing sickle cell disease, CHAK continues to carry out capacity strengthening of health care providers in early diagnosis, management and care, continuous community awareness and education through dialogues, facility open days and community education, patient empowerment through psychosocial support groups and improving access to affordable healthcare products.

Dr. Kipngeno says he has managed Ashley’s sickle cell for the past one year, working through several crisis, advising on medication and educating her mother about the disease, especially warning signs of an impending crisis. He wishes CHAK and other partners would offer more support to Sickle Cell Disease patients like Ashley to help them better cope with the life-long condition.  

The Maseno Mission Hospital paediatric department currently has 15 patients, most of who are outpatients. However, for some of these children, sickle cell complications have led to constant hospital admissions, leading to huge medical bills and mental stress for them and their families.

Ashely has been admitted in hospital three times this year with her mother constantly by her side during each of the admissions. Although this is the first time she has had so many admissions in such a short span of time, Sickle Cell Disease has negatively affected her life, limiting her school attendance, social and play time and reducing her appetite for food. She can only do light chores at home.

Pesila says managing sickle cell is expensive, adding that she spends Ksh3,000 on average monthly on transport and drugs when her daughter has not been admitted. The bill for Ashely’s last hospital admission accrued to about Ksh20,000 and although it was catered for by NHIF, she still had to buy hydroxyurea out of pocket.  The little income she earns from selling bananas cannot meet the cost of treatment. Often, Pesila has to throw out the bananas when they go bad as a result of Ashley being admitted in hospital for days. Because Ashley is a minor, Pesila has to stay with her in the hospital ward and take care of her. To make matters worse, sometimes Ashely needs blood transfusion, adding to the huge medical bills. When Ashley suffers a crisis, she is often admitted in a Level 4 hospital for better management, which means higher expenditure.

Pesila’s husband who is a carpenter tries his best to pay the hospital bills for his daughter but is often short of money, given that the couple has four other children.

Although life has not been easy for Ashely, her mother remains hopeful, having faith that God will strengthen the young girl to fight the Sickle Cell Disease and her family and community to give the needed support.   

Pesila urges people dealing with Sickle Cell Disease to remain strong, have faith in God and support others going through the very long journey with the disease.

She adds that sickle cell is a long-term condition that requires support and team work from family, community and government and emphasises the need for awareness and education on the disease.