Haemophilia Association urges state fast-track access of drugs

Kenya Haemophilia Association chair Dr Kibet Shikuku has urged the government to fast-track the process to bring in drugs.

Shikuku said the country has not had access to haemophilia drugs in the last six months.

This is owing to the pending signing of the Memorandum of Understanding between the government and the donors.

Shikuku, who is also the Consultant Pathologist, The Nairobi West Hospital, was speaking to the Star ahead of World Haemophilia Day on Monday. 

The theme for 2023 is, "Access for All: Prevention of bleeds as the global standard of care."

He said the country relies on donations for Kenyan haemophiliacs to survive, noting that this cannot be the ultimate solution. 

"For the last six months, we have not had drugs as a country. Even the donations that we had, had to be thrown away because they got spoilt at the airport as they cannot be shipped into Kenya," he said.

Shikuku said this was due to a lack of clearance documentation needed.

"The MoU that the Kenyan government and the donor were supposed to sign has not been signed," he said.

The doctor lamented that the period has been especially difficult for patients and the haemophilia association.

"We have lost almost 10 patients since we failed to have medication. I'm appealing to the Kenyan government to quickly finish with the MoU so that the Ministry of Health and the Treasury can sign whatever else documentation they need to so that Kenyans can access drugs," Shikuku said.

He also urged the government to start budgeting on drugs.

Explaining the need for donation, Shikuku said the haemophilia drugs are expensive.

One single injection goes for about Sh150,000 to Sh200,000 for an adult and for a child, it ranges from Sh50,000 to Sh100,000.

He noted that the costs are not reachable to a lot of people, adding that the drugs are not even readily available.

"The government has been partnering with the World Federation of Haemophilia to actually give us drugs and they are brought in as donations," he said.

The government waives all taxes for the donation.

Shikuku said the country has been getting donations of up to Sh2 billion worth of drugs, which are used within a year.

"We would urge the government through NHIF to make sure that the drugs are available through Kemsa so that patients can access them in the treatment centres that we have developed," he said.

He, however, lauded the government for its support so far, noting that even though NHIF only covers inpatient services, the outpatients get drugs for free, when they are available. 

Currently, there are 14 clinics in Kenya, an addition of 12 to the original two which were Kenyatta National Hospital and Moi Teaching and Referral Hospital.

"We are planning to make the treatment centres available in all the counties should all go well. It is a gradual process," Shikuku said.

He said they are opening joint clinics for haemophilia and sickle cell.

This is in a bid to maximise the utility of clinicians and try to specialise care for the two disease entities.

"We have also been training clinicians to understand, identify the disease and treat it wherever they are," he said.

The KHA has developed a website which allows persons to register either as a volunteer or a patient.

Shikuku encourage any person who has a history of bleeding a lot or comes from a family with such a history to reach out.

He also appealed to women who experience heavy menstrual periods to go for screening.

The doctor said even though the disease mostly affects men, there is a number of affected women, who deal with it in silence.

"You can communicate with us through the website. Our contacts are there. We also have an application. We should be able to reach us and we will help you," he said.

He added that the screening is free until June in treatment centres including the KNH, MTRH, Mombasa, Kakamega, Kisumu, Kisii, Meru, Laikipia and Murang'a.