Sickle cell disease still plagues Western Kenya due to lack of drugs

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When Suvy Amadi was born, she was a bubbly baby. But after two months, she started having a ‘strange illness.’

Amadi, aged 34, hails from Mumias East constituency in Kakamega county. Her health deteriorated to the extent that she required a blood transfusion. Some locals attributed her condition to ‘witchcraft.’

However, after nine months of undergoing various medical tests and treatments, she was finally diagnosed with sickle cell disease, an inherited group of disorders that cause the red blood cells to become misshapen and break down.

“My parents were informed by the medical professionals who used to treat me that I wouldn’t ‘survive’ past my fourth birthday,” Amadi recounted. She added, “I didn’t succumb as predicted at the age of four. Nevertheless, the doctors continued to forecast doom to my parents, insisting that I would not live beyond my 18th birthday.

“During my primary and secondary school years, I would fall critically ill every two weeks, necessitating hospitalisation for blood transfusions. This imposed a substantial financial burden on my parents,” Amadi recalled.

She continued, “Enduring the ‘agonising pain’ I experienced, I became resigned to the idea of dying and being laid to rest, believing that afterward, there would be no more suffering.”

To the astonishment of many, she celebrated her 18th birthday. “After marking my 18th birthday, I believed my time to die had finally arrived, as predicted by the doctors. However, that did not come to pass, and I thought God had forgotten to take me, despite the excruciating pain I endured.”

“I was prepared for death, and when I didn’t see it approaching, I fell into depression. But at 26 years old, I started to glimpse hope for life again. I joined groups of ‘sickle cell warriors,’ and together, we began to ‘battle’ the disease,” shared Amadi.

She continued, “Now I know how to manage it, and I ‘survive’ by managing the condition. During a painful crisis, you can’t work or engage in physical activities that drain your energy. One must also avoid cold temperatures and ensure they consume enough water to prevent becoming critically ill.”

Amadi adheres to her medication regimen, which includes hydroxyurea to aid in red blood cell production, folic acid, and paludrin (an anti-malaria drug), as the Western region is prone to tropical malaria. For children, Pen-V is administered as an anti-malaria treatment.

“When you contract malaria, it can trigger the sickle cell condition, and you become seriously ill. You have to take the medication daily because sickle cell disease is life-threatening, and currently, there is a shortage of these drugs, making them expensive,” explained Amadi.

A single tablet of hydroxyurea costs Sh6,300 per month, which is the primary dosage and needs to be taken three times a day. Paludrin is priced at Sh1,050 per month and is currently unavailable, according to Amadi.

“The excruciating pain experienced by a sickle cell patient is comparable to what a cancer patient endures. Sickle cell treatment is prohibitively expensive, and without medical coverage or the means to purchase medications, a sickle cell patient faces the risk of premature death,” emphasised Amadi.

Sickle cell disease is prevalent in the Western, Nyanza, and Coastal regions, with Western Kenya bearing a high burden due to the region’s commonality with malaria. Sickle cell disease affects approximately three percent of births.

In the past year, Kakamega alone recorded a total of 361 newly diagnosed cases in the county sickle cell registry, as reported by the county governor’s wife Janet Kasilly, who is leading the campaign against the disease.

New cases

Speaking at Butere ACK Church during the launch of the annual ‘sickle cell awareness month,’ Prof. Kasilly stated, “All our 12 sub-counties reported new cases, with Matungu recording the highest number of 80 new cases.”

In our battle against sickle cell disease, we must address two critical challenges: the lack of access to proper screening and diagnosis, and the unavailability of essential medications,” said Prof. Kasilly.

She stressed the importance of “proper medical care and access to necessary medications” in effectively managing the symptoms and complications of the disease, asserting that no individual should have to endure unnecessary pain and suffering due to medication shortages.

“We must advocate for improved access to these life-changing drugs, ensuring that our Sickle Cell warriors receive the care they rightfully deserve,” Prof. Kasilly said.

She urged the Department of Health to prioritise sickle cell disease prevention and treatment interventions and to develop initiatives for research, surveillance, prevention, and treatment of heritable blood disorders.

“Ensure the availability of supplies of the medication required by our warriors and intensify health promotion, education, and awareness campaigns on the disease. Additionally, develop a bill to subsidize the cost of medication for the warriors,” Prof Kasilly said.

Constance Tenge, a paediatrician and associate professor at the Department of Child Health and Pediatrics at Moi University, conducted a study in 76 selected health facilities in the Western region to assess the availability of sickle cell services.

The study was conducted between January and April 2022 in Kakamega, Bungoma, Busia, Trans Nzoia, and Vihiga counties. Out of the 76 health facilities, only 50 provide services for sickle cell patients, while 26 do not offer such services.

Bungoma had registered 606 patients, Busia (567), Kakamega (494), Trans Nzoia (280) and Vihiga had 109 patients translating to 2,056 people living with sickle cell disease across the selected counties.

Drug availability

Prof Tenge said a paltry 30.7 per cent (633 patients) out of the 2,056 registered were accessing medication (hydroxyurea tablets) and 1,423 (69.3 per cent) could not afford to get the drugs.

“From the study, it was evident that the drugs are available but very expensive,” said Prof Tenge.

She added: “Those who have medical cover (NHIF or other insurance) which were active and beneficial were 34.1 per cent (702 patients) and those who do not have any medical cover were 65.1 per cent (1,354 patients).”

Tenge said a majority of the people in the region who carry the disease (sickle cell trait – HB AS) are unaware of their status and are often surprised when they have a child with sickle cell anemia (HB-SS).

She noted that public health facilities in the region are NHIF-accredited, and equipped with laboratories and skilled staff. However, a major challenge has been the lack of prioritization by successive administrations at both the county and national government levels.

“When patients visit the hospital, they expect to see a healthcare worker, undergo lab tests, receive medication, and then go home. There’s no need for a grand hospital entrance with nothing inside,” said Prof. Tenge.

Dr. Roselyne Malangachi, a consultant paediatrician at Kakamega Teaching and Referral Hospital, emphasised the importance of determining one’s “sickle cell status” before marriage, especially in high-burden areas like Western, Nyanza, and the Coast. This approach aims to prevent children from being born with sickle cell disease by ensuring that individuals are aware of their carrier status. Subsequently, pre-conception genetic and reproductive counselling can be provided.

“To achieve effectiveness, all these strategies should be implemented concurrently and systematically under a comprehensive sickle cell control program,” Dr. Malangachi said.

She added: “The first step is to create an SCD registry/database at county and national levels, identify patients either clinically or newborn screening and profile them for comprehensive care.”

Dr Dorothy Nyong’o, the wife of Kisumu Governor Anyang’ Nyongo, said one in every five newborn children in the county is born with sickle cell.

According to Dorothy, the majority of them don’t make it to the fifth birthday since they cannot access proper medical care, adding that those affected spent prolonged periods in hospitals fighting for their lives, miss many school days and are always fatigued.

“Sickle cell is a neglected disease in Kenya. The country lacks a sickle cell control programme and it’s very disheartening,” said Dr Nyong’o.

She added: “We must advocate to have sickle cell included in universal healthcare coverage since its treatment and care is very expensive.”

When Suvy Amadi was born, she was a bubbly baby. But after two months, she started having a ‘strange illness.’

Amadi, aged 34, hails from Mumias East constituency in Kakamega county. Her health deteriorated to the extent that she required a blood transfusion. Some locals attributed her condition to ‘witchcraft.’

However, after nine months of undergoing various medical tests and treatments, she was finally diagnosed with sickle cell disease, an inherited group of disorders that cause the red blood cells to become misshapen and break down.

“My parents were informed by the medical professionals who used to treat me that I wouldn’t ‘survive’ past my fourth birthday,” Amadi recounted. She added, “I didn’t succumb as predicted at the age of four. Nevertheless, the doctors continued to forecast doom to my parents, insisting that I would not live beyond my 18th birthday.

“During my primary and secondary school years, I would fall critically ill every two weeks, necessitating hospitalisation for blood transfusions. This imposed a substantial financial burden on my parents,” Amadi recalled.

She continued, “Enduring the ‘agonising pain’ I experienced, I became resigned to the idea of dying and being laid to rest, believing that afterward, there would be no more suffering.”

To the astonishment of many, she celebrated her 18th birthday. “After marking my 18th birthday, I believed my time to die had finally arrived, as predicted by the doctors. However, that did not come to pass, and I thought God had forgotten to take me, despite the excruciating pain I endured.”

“I was prepared for death, and when I didn’t see it approaching, I fell into depression. But at 26 years old, I started to glimpse hope for life again. I joined groups of ‘sickle cell warriors,’ and together, we began to ‘battle’ the disease,” shared Amadi.

She continued, “Now I know how to manage it, and I ‘survive’ by managing the condition. During a painful crisis, you can’t work or engage in physical activities that drain your energy. One must also avoid cold temperatures and ensure they consume enough water to prevent becoming critically ill.”

Amadi adheres to her medication regimen, which includes hydroxyurea to aid in red blood cell production, folic acid, and paludrin (an anti-malaria drug), as the Western region is prone to tropical malaria. For children, Pen-V is administered as an anti-malaria treatment.

“When you contract malaria, it can trigger the sickle cell condition, and you become seriously ill. You have to take the medication daily because sickle cell disease is life-threatening, and currently, there is a shortage of these drugs, making them expensive,” explained Amadi.

A single tablet of hydroxyurea costs Sh6,300 per month, which is the primary dosage and needs to be taken three times a day. Paludrin is priced at Sh1,050 per month and is currently unavailable, according to Amadi.

“The excruciating pain experienced by a sickle cell patient is comparable to what a cancer patient endures. Sickle cell treatment is prohibitively expensive, and without medical coverage or the means to purchase medications, a sickle cell patient faces the risk of premature death,” emphasised Amadi.

Sickle cell disease is prevalent in the Western, Nyanza, and Coastal regions, with Western Kenya bearing a high burden due to the region’s commonality with malaria. Sickle cell disease affects approximately three percent of births.

In the past year, Kakamega alone recorded a total of 361 newly diagnosed cases in the county sickle cell registry, as reported by the county governor’s wife Janet Kasilly, who is leading the campaign against the disease.

New cases

Speaking at Butere ACK Church during the launch of the annual ‘sickle cell awareness month,’ Prof. Kasilly stated, “All our 12 sub-counties reported new cases, with Matungu recording the highest number of 80 new cases.”

In our battle against sickle cell disease, we must address two critical challenges: the lack of access to proper screening and diagnosis, and the unavailability of essential medications,” said Prof. Kasilly.

She stressed the importance of “proper medical care and access to necessary medications” in effectively managing the symptoms and complications of the disease, asserting that no individual should have to endure unnecessary pain and suffering due to medication shortages.

“We must advocate for improved access to these life-changing drugs, ensuring that our Sickle Cell warriors receive the care they rightfully deserve,” Prof. Kasilly said.

She urged the Department of Health to prioritise sickle cell disease prevention and treatment interventions and to develop initiatives for research, surveillance, prevention, and treatment of heritable blood disorders.

“Ensure the availability of supplies of the medication required by our warriors and intensify health promotion, education, and awareness campaigns on the disease. Additionally, develop a bill to subsidize the cost of medication for the warriors,” Prof Kasilly said.

Constance Tenge, a paediatrician and associate professor at the Department of Child Health and Pediatrics at Moi University, conducted a study in 76 selected health facilities in the Western region to assess the availability of sickle cell services.

The study was conducted between January and April 2022 in Kakamega, Bungoma, Busia, Trans Nzoia, and Vihiga counties. Out of the 76 health facilities, only 50 provide services for sickle cell patients, while 26 do not offer such services.

Bungoma had registered 606 patients, Busia (567), Kakamega (494), Trans Nzoia (280) and Vihiga had 109 patients translating to 2,056 people living with sickle cell disease across the selected counties.

Drug availability

Prof Tenge said a paltry 30.7 per cent (633 patients) out of the 2,056 registered were accessing medication (hydroxyurea tablets) and 1,423 (69.3 per cent) could not afford to get the drugs.

“From the study, it was evident that the drugs are available but very expensive,” said Prof Tenge.

She added: “Those who have medical cover (NHIF or other insurance) which were active and beneficial were 34.1 per cent (702 patients) and those who do not have any medical cover were 65.1 per cent (1,354 patients).”

Tenge said a majority of the people in the region who carry the disease (sickle cell trait – HB AS) are unaware of their status and are often surprised when they have a child with sickle cell anemia (HB-SS).

She noted that public health facilities in the region are NHIF-accredited, and equipped with laboratories and skilled staff. However, a major challenge has been the lack of prioritization by successive administrations at both the county and national government levels.

“When patients visit the hospital, they expect to see a healthcare worker, undergo lab tests, receive medication, and then go home. There’s no need for a grand hospital entrance with nothing inside,” said Prof. Tenge.

Dr. Roselyne Malangachi, a consultant paediatrician at Kakamega Teaching and Referral Hospital, emphasised the importance of determining one’s “sickle cell status” before marriage, especially in high-burden areas like Western, Nyanza, and the Coast. This approach aims to prevent children from being born with sickle cell disease by ensuring that individuals are aware of their carrier status. Subsequently, pre-conception genetic and reproductive counselling can be provided.

“To achieve effectiveness, all these strategies should be implemented concurrently and systematically under a comprehensive sickle cell control program,” Dr. Malangachi said.

She added: “The first step is to create an SCD registry/database at county and national levels, identify patients either clinically or newborn screening and profile them for comprehensive care.”

Dr Dorothy Nyong’o, the wife of Kisumu Governor Anyang’ Nyongo, said one in every five newborn children in the county is born with sickle cell.

According to Dorothy, the majority of them don’t make it to the fifth birthday since they cannot access proper medical care, adding that those affected spent prolonged periods in hospitals fighting for their lives, miss many school days and are always fatigued.

“Sickle cell is a neglected disease in Kenya. The country lacks a sickle cell control programme and it’s very disheartening,” said Dr Nyong’o.

She added: “We must advocate to have sickle cell included in universal healthcare coverage since its treatment and care is very expensive.”

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