Tell us a little about yourself
My name is Patricia Karani. I live in the city of Nairobi, in Kenya and I am the Regional Patient Advocate representing the Sub Sahara Region. I am also a patient living with HAE.
Tell us a little about your region
Sub Sahara Africa is, geographically and ethno-culturally, the area of the continent of Africa that lie south of the Sahara Desert. It includes West African countries, east and central African countries and countries to the South.
Our main challenges include:
- An inability to afford medications as most people survive on less than a dollar a day
- A lack of specialist doctors who have adequate knowledge on HAE
- Limited digital registries in our hospitals thereby making it hard to gather medical information
- Little reimbursement by government for rare and chronic conditions, and little government funding on medical research on rare conditions as the focus remains on communicable diseases
- Testing reagents are unavailable in public hospitals
- Social stigma brought about by culture and society that view sick persons as a misfit in society
- Ultimately a lack of awareness initiatives from governments
There is immense diversity within the 750 million people in Sub Sahara Africa and within each country are cultural and ethnic groups with their own history, language and religion. More than two thousand separate and distinct languages are spoken in all of Africa. Forty are spoken by more than a million people.
What are you most proud of being able to do for the countries in your region?
I am most proud of being able to bring together our South African team. I am also proud of getting to meet, network and work with wonderful doctors in my region who are truly patient oriented. Ultimately, I’m proud of being part of HAEi, which shares my passion for raising awareness in my region through doctor seminars and sharing of updated knowledge on HAE.
What changes have happened for people with HAE in your region whilst you have been an RPA?
Two new Membership Organisations (MOs) have been registered since I took up the RPA role, and we were able to get access to modern medication for the South African group. Clinical trials have also been initiated for the South African team which is beneficial for the patients.
We have also raised awareness and trained 90 doctors from varied medical faculties in the region through our HAEi awareness program that started in 2018. Training has taken place in Kenya, Rwanda, Sudan and South Africa. HAE has also been discussed in major African doctor workshops like African Society for Immunodeficiency (ASID), Kenya Pediatrics Association (KPA) and Allergy Society of Kenya (ASOK) which educate doctors from different countries. The HAE discussion will soon be heard in many more countries and through this we are building a community of doctors who have heard of HAE and gained better knowledge on the condition.
What Next Steps will you be taking as an RPA to support your region?
I will work on ensuring that the HAE discussion has been heard in almost all the 54 countries in the region, and work with the medical fraternity to disseminate information. Encouraging people with HAE to form support groups in their country and so Increasing the number of HAE MOs in the region will help ensure patients get proper treatment and management of the condition.