The situation in Kenya: HAE real-life experience
Dr Priya Bowry spoke about her home, Kenya, a country on the east coast of Africa. She said it was famous for safaris and that the HAE patients she’d met were amazing.
Dr Bowry said that whilst much has advanced in HAE care, in resource-constrained settings such as sub-Saharan Africa, very few healthcare workers know how to diagnose HAE, and diagnostic tools are largely unaffordable and unavailable. Only older drugs are available. This results in delayed or missed diagnosis and suboptimal care. All of this means, according to Dr Bowry, patients struggle, especially if they are having a laryngeal attack. They can’t reach medical facilities, and acute management is sometimes unavailable.
To illustrate the challenges, Dr Bowry drew upon a single patient with HAE, a 42-year-old lady from a rural part of Kenya called Embu. She painted a word picture of the place being near Mount Kenya, and being able to see elephants roaming nearby. This patient is a farmer who grows crops to feed herself and her family. She has limited English and a meager income, with little access to health and education.
She works on the land, which triggers swellings in her hands and feet. In the past, she has had laryngeal and facial swellings. She has been treated with antihistamines, steroids, and adrenaline, but nothing has helped. Her continuing symptoms have led to her being stigmatized by her local community, who say she is cursed or a witch.
Quite by chance, her son, studying for medical school, saw a mention of HAE in a textbook. After speaking with Patricia Karani of HAEi, the mother traveled three hours to the capital, Nairobi, to meet with Dr Bowry.
Confirming an HAE diagnosis with a C1 inhibitor test costs $150, which was this patient’s monthly salary, for just a single diagnostic test. Medicines were ‘dinosaur’ said Dr Bowry: tranexamic acid and progestin, for $80 a month. Thankfully, there is one modern HAE on-demand therapy, but without refrigeration, it is stored in a local medical facility, where every consultation comes with a cost.
Dr Bowry summed up the challenges:
- There is limited literacy and capacity
- People are poor. They lack basic access to technology to access information or store medicines
- The knowledge of healthcare professionals is limited
- There is poor health literacy, poor drug compliance, and support
- There are social and cultural factors that mean rare diseases are stigmatized in African culture
Ultimately, Dr Bowry said, education is the only way forward. To date, HAE has been included in National Guidelines, which was a massive step. Engagement with stakeholders, such as pharmaceutical companies, can expand access through programs for low- and middle-income countries, as well as through clinical trials.
‘For HAE, the time to change is now.’
