Sickle Cell Disease (SCD) patients have petitioned the government to subsidize the cost of drugs to cushion them against the high cost of treatment.
The cost of Hydroxyurea which is used to manage the condition alongside other drugs, they said, stands at Sh50 per tablet forcing thousands of patients to go without the essential drug.
Nancy Waliaula who runs a community initiative registering SCD patients in Nyanza and Western regions said the cost of treatment was beyond the reach for an average family subjecting patients to days of excruciating pain.“A dose of this drug for one month will cost you about Sh1, 500. Some of these patients come from very needy families and it is very difficult for them to afford it,” she said.
Most of the public health facilities in the two regions, she added, lacked the essential drugs in their stores endangering the lives of patients especially children.
She said the government must consider sickle cell disease as a national health problem and subsidize the drugs to enhance access to treatment.
The Ministry of Health, she added, must also establish sickle cell support clinics in high prevalence regions of Nyanza, Western and the Coast to help manage the disease.
Waliaula said facilities must be equipped with equipment to screen for the disease to scale up prevention, early diagnosis and treatment.Studies in Western part of Kenya (predominantly inhabited by the Luo and Luhya communities) have demonstrated high prevalence of SCD at 3.2 and 4.5 per cent in the respective communities.
A majority of children with SCD in the area die undiagnosed with 50-90 per cent dying before heir fifth birthday.
About 4.5 per cent of children are born with SCD with an additional 18 per cent born with sickle cell trait (SCT).
A person with sickle cell disease has two copies of the gene, one from each parent. A person with SCT has only one copy of the gene and cannot develop sickle cell disease but is considered a carrier and can pass the gene to their children.
According to Waliaula proper screening for couples before agreeing to have children was the surest way of dealing with the disease.
“We need to scale up screening and counseling so that couples who intend to have children and are carriers can be advised otherwise to avoid giving birth to children with SCD,” she said.Neville Guda who is living with SCD asked the government to enact laws compelling insurance companies to remove the one year waiting period for congenial disorders.
This, he said, will help many SCD patients use their insurance covers to seek treatment.
The legislation, he added should recognize SCD as a disability to ensure that patients are exempted from heavy taxation given the heavy financial burden they bear to manage the disease.
Michelle Omulo who has battled the disease for 20 years decried discrimination at the work place for SCD patients.
“People living with SCD are usually not offered employment even if they qualify while some are fired when their employers discover about their condition,” she said.
On average, a sickle cell patient suffers five episodes of crises annually and 5-10 days of hospitalization per episode.
By Chris Mahandara
