Agony of patients with blood disorders suffering in silence, stigma
By George Kebaso, October 30, 2024The number of people battling various blood diseases (haemophilia) is alarming, as those affected suffer in the silence of stigma.
Experts in blood disorders had targeted to reach an estimated 700 patients by next year, but only 25 per cent are under care since the programme kicked off in late 2022.
In December 2022, the Kenya Haemophilia Association (KHA) launched a Patient Identification Mobile App as part of their participation in the World Federation of Haemophilia- WFH Path to Access to Care and Treatment (PACT) Program.
The PACT Program is a five-year initiative designed to improve outreach and diagnosis, and increase access to sustainable care for people with inherited bleeding disorders.
However, yesterday KHA Chair, Dr Kibet Shikuku said the process of identifying patients with blood disorders has been painfully slow as 2025 beckons, signalling a possibility the programme may suffer delays.
“These diseases are not easily found and being treated because most people treat them as problems with families or with traditions well phrased as “Ni kurogwa” , to loosely mean, to be bewitched or cursed,” said Dr Shikuku in Nairobi where the East Africa Blood Disorders Leadership Forum was being hosted by the Novo Nordisk Foundation.
The theme of the two-day meeting, which brings on board various cancer stakeholders, is ‘Moving Decisions and Policy Makers to Action’.
In most cases, haemophilia patients present with malaria symptoms, meaning that a lot of times they get treated for a different disease and it is perhaps the reason it might take long to identify and treat them on time.
Marriage counselling
However, all is not lost. Locally, 23 facilities specialised in haemophilia have been established in 17 high-burden areas in Western Kenya, Nyanza, Coast region and parts of Rift Valley among others.
“In the region, we are forming an East Africa Clinical Advisory Committee- to develop and recommend new or revised goals and objectives of the programme,” Dr Shikuku added.
Dr Shikuku called upon the government, and indeed authorities across East Africa to take up these diseases so that they can be budgeted for.
“Whatever has been given to the Social Health Authority, only covers sickle cell anaemia, but we are advocating for the budget to be expanded to cover other blood disorders,” he said.
According to acting head of the Non Communicable Diseases (NCDs) Division, Dr Gladwell Gathecha, besides the on-going infant screening for the sickle cell anaemia disorders, the government is planning to conduct counselling for partners intending to marry over genetics.
Medical Services Principal Secretary, Harry Kimtai acknowledged that the problem is huge and requires collaboration and awareness to address.
“Globally, haemophilia affects 1 in every 10,000 people. In Kenya, it is estimated that about 5,500 people are living with this condition, with only about 940 currently in care, mainly due to low awareness, limited access to care and limited capacity to detect and manage the condition,” he said.