TACOMA, Washington — Typically, when someone gets a cut or a scrape, they expect the bleeding to stop eventually. However, for those with hemophilia, this is not a guarantee. Hemophilia is a genetic condition in which one’s blood doesn’t properly clot because it lacks certain proteins. This means that cuts and scrapes could continue to bleed for a long time and eventually become fatal in severe cases. Additionally, people with hemophilia may experience spontaneous bleeding in their joints, which causes swelling, discomfort and, if left untreated, deformities.
Globally, about one in every 5,000 people have Hemophilia A (the most common type of hemophilia), and while it’s genetically passed down by women, it mostly impacts men. According to the World Federation of Hemophilia, around 70% to 75% of those affected by hemophilia receive little to no care. This 70% to 75% is disproportionately found within low-income countries. In higher-income countries, this condition is relatively easy to manage with the right medication. Unfortunately, hemophilia in Kenya and other low-income countries is much more challenging to manage due to stigma, lack of availability and access to medical facilities and treatment.
Hemophilia Stigma in Kenya
At the age of eight, Peter Muchoki and his brother were diagnosed with hemophilia after a trip to the hospital in Nairobi, Kenya. Not long after this diagnosis, Peter’s father abandoned him and the rest of his family. Peter explains that he thinks his father “saw that we wouldn’t be any use to him. We would be giving him only problems.”
Hemophilia in Kenya and other sub-Saharan African countries is accompanied by intense stigma. Often, little is known about the disease, leading many communities to assume that it is “witchcraft” or a “curse.” These conceptions of hemophilia are detrimental to the lives and treatment of hemophiliacs.
As seen in Peter’s story, the stigma against hemophilia can lead to abandonment, or some families may not even seek medical treatment. Without treatment, either getting blood infusions or getting injections of clotting factor, which stops bleeding and reduces swelling, those with hemophilia face a much higher risk of death.
Families may instead seek the help of a witch doctor or shaman to cure the illness. Sometimes these healers unintentionally harm or kill those with hemophilia by using traditional remedies. A common technique is making cuts on the body and placing herbs in the wounds, but for someone with hemophilia, this could be fatal.
Lack of Availability and Access
In many low-income countries, the question of getting medical care has two factors: availability and accessibility. In other words, are there medical centers located in the country, and are people actually able to reach these medical centers?
Unfortunately, in many low-income countries, the answer to both these factors is no. There may only be a few medical care facilities located in larger cities. For rural families, they may have to take hour-long bus rides just to reach the hospital or a visit may not even be possible. Additionally, these medical centers may not be well funded, so providing transport to reach patients far away is not guaranteed.
For many with hemophilia in Kenya, a lack of availability and access has proved dangerous and difficult to overcome. If a hemophiliac is experiencing a severe bleed and takes hours to reach the hospital, the patient may die during transport.
One mother, Muna Faize, explains that sometimes once a week, she would need to find $150 to take a bus to get her 17-month-old son to the hospital. The bus would leave at 3 p.m. and arrive the next morning. She says that “last week he had some cut in his mouth and he bled [until]I got him [to the hospital].”
Another woman, Virginia Muthoni, tells the heartbreaking story of her father’s death at the age of 32. He had hemophilia, and after sustaining a stomach injury, he died while waiting for his family to raise funds for a bus fare to the hospital. Often, those that need the most care face the greatest disadvantages to even reaching it.
Lack of Medical Treatment
In higher-income countries, the clotting factor is readily available and is a free or subsidized treatment. It’s often injected consistently and used as a preventive measure, allowing hemophiliacs to live a relatively normal life. However, for those with hemophilia in Kenya, this essential medicine is often unaffordable and unavailable.
Clotting factor doses for children can range from $350 to $1000, depending on the severity of the case or incident. For adults, this cost can double or even triple. Hemophilia in Kenya, when properly treated, can cost patients hundreds of thousands of dollars every year. The chairmen of the Kenya Hemophilia Association, Dr. Kibet Shikku, calculated that the amount of factor used to treat two patients in higher-income countries is the same amount of factor found within the entire country of Kenya. In higher-income countries, the life expectancy disadvantage for those with hemophilia is about 30%; however, in low-income countries, it’s about 77%.
While treatment for hemophilia in Kenya is facing many barriers, many organizations are stepping in to help. Through advocacy and spreading awareness of the disease, Kenya has received many foreign donations to increase the number of clotting factors available in-country. Additionally, in 2014, the companies Bioverativ and Sobi Sobi agreed to provide one billion units of clotting factor over a span of 10 years. Furthermore, the Novo Nordisk Hemophilia Foundation, an organization that invests in hemophilia treatment training and facilities helped open a hemophilia center in Muranga, Kenya. Equitable treatment for hemophilia in Kenya has a long way to go, but it’s on the right track.