Shortage of drugs is a labour of pain as we fight to stay alive?, sickle cell patients say

Seth Otieno holding some of the drugs needed for his condition. [Standard]

Seth Otieno struggles and remains restless. Lately, he has endured stabbing pains.

A biting shortage of sickle cell drugs in public and private hospitals in Nyanza, for the past six months, has exposed him and other patients to agony.

And sadly, they are losing hope. Sickle cell disease is caused by a gene mutation that leads to misshapen red blood cells.

These malformed cells have more trouble moving through blood vessels and could break or clump in ways that could lead to significant pain, strokes and tissue or organ damage.

It is not a mild illness and patients are advised to take Paludrine drugs, which are an effective antimalarial agent.

They are also put on folic acid, which helps in the production of red blood cells and Hydroxyurea drugs to reduce the frequency of painful episodes or crises.

“I am in pain; I haven’t been able to do anything on my own. With no drugs, I am restless and helpless,” Mr Otieno said.

Investigations by The Standard showed that Hydroxyurea drugs are currently being donated in by Novartis at Jaramogi Oginga Odinga Teaching and Referal Hospital (JOOTRH) and dispensed at half the market price.

Thus, a patient buys the prescribed two tablets at Sh48 per day. This means a patient spends Sh1,440 per month on Hydroxyurea drug.

However, the price is still unaffordable to many vulnerable families.

In addition, the biting shortage of Hydroxyurea, Paludrine and folic acid has hit both private and public hospitals across the region since mid-last year.

People with the disease suffer from inherited blood disorders caused by a mutation in a single gene. Typically, they endure episodes of debilitating pain as well as chronic pain.

World Health Organization (WHO) estimates that each year, more than 300,000 babies in sub-Saharan Africa are born with sickle cell disease. In Kenya, it is estimated that 6,000 children are born with the disease.

Between 50 to 80 per cent of these children die before their fifth birthday due to a lack of access to testing, comprehensive clinical care, and early intervention programmes.

In Kisumu, 21 out of 100 children are born with the disease. Kisumu is earmarked to be the Index County of Implementation for the National SCD Programme anchored under the five-year MoU between Norvatis and the Ministry of Health (2020-2025).

At Tom Mboya Estate, we meet Ms Michelle Omullo, another patient. She was diagnosed with the disease at the age of three. 

She has suffered multiple crises since childhood until one day, she suffered a stroke on the left side of her body. Ms Omullo is required to go for physiotherapy sessions, which she cannot afford.  

She collects her medication at St Luke Hospital in Kisumu. However, she revealed that the drugs have been missing in the private hospital for the last three months.

She explained that there was a time she could spend Sh1,500 for all her medication, but currently, it has shot to Sh4,000 per month.

“The drugs are not readily available and the ones that are available are very expensive. I cannot afford,” Ms Omullo lamented adding that at times, she is forced to travel to Nairobi to get the drugs at Kenyatta National Hospital(KNH).

“Whenever I miss taking the drugs, my eyes turn yellow and suffer joint pains. I cannot live without these drugs,” Ms Omullo said.

Her only wish is for the government to allow her to access her medication on National Hospital Insurance Fund (NHIF) cover at a subsidized cost or receive the drugs for free. 

Veronica Bita shared the challenges of nursing her 13-year-old daughter, who is a patient.

She said her daughter has been prescribed two tablets of Hydroxyurea per day, which cost Sh90-100, translating to about Sh3000 per month.

“I started a support group, of caregivers, parents with children living with sickle cell and also adults. This was in partnership with Obama children’s clinic in JOOTRH,” she said.

She revealed that since mid-last year, Paludrine has not been available in the market.

Fredrick Oluoch, Kisumu county’s director of Public Health and Sanitation, acknowledged the acute shortage of sickle cell drugs blaming it for not being listed as essential drugs.

“Currently, the drugs have been listed as essential medicine and the situation is bound to change,” Oluoch said. He said Kenya Medical Supplies Agency (KEMSA) didn’t have the drugs, forcing the county to purchase from other outlets at a very expensive price.

He said in the next supplies, which will be in mid-April, the drugs will be available.

[email protected]