As the Life Raft Group continues to grow globally, we will highlight our international friends in each newsletter issue.
In this interview with Ferdinand Mwangura, Chairman of Henzo Kenya, we discover how the seeds were planted for this thriving support group of over 650 CML and GIST patients in Kenya.
Henzo Kenya was formed in June of 2007 by three CML (Chronic Myeloid Leukemia) patients and two volunteers who saw a lack of emotional support resources available for this patient community. By 2009, Henzo Kenya was officially registered as a support group, and recognized as a community based organization by the Ministry of Gender, Children and Social Development in Kenya. Henzo membership includes survivors of CML and GIST as well as their caregivers and volunteers. Their common goal is to support one another in all aspects of life.
Henzo means love in Kiswahili, and the group’s motto is “If you want to run fast, you run alone, but if you want to run for a long time, you run as a group.”
During our discussion, Ferdinand provided insight into the origins of the organization and his involvement.
Q: How did you personally become involved in Henzo Kenya?
A: “Back in 2007, I was visiting my doctor for a routine checkup on one of the typical clinic days, to get updates on the progress of my condition (CML) and to go back home with a prescription. But this particular day was slightly different since the doctor engaged me on a topic outside the normal conversation between a doctor and a patient. He mentioned to me the importance of a support group and encouraged me to bring together other patients. He then gave me the contacts of another patient by the name of Francis Kariuki (the late) and advised me to get in touch with him. I met Mr. Kariuki, introduced myself and inquired if he was ready to take up the challenge of working together.
Mr. Kariuki informed me he was a GIST patient not CML. Two weeks later, he reached out to me to say that he was ready to discuss how we could go about the process of starting a support group.
At that point it was apparent that we needed to come up with an interim governing body that would enable us propose a name, create a constitution and register the group with the government of Kenya. Mr. Kariuki took the chairman’s position and I became the deputy chairman. We started by recruiting GIST and CML patients who were in the GIPAP (Glivec International Assistance) Program). Volunteers and caregivers joined us. This was encouraging for the patients to see non-patients volunteering and joining us. This was actually the turning point. Our highly motivated group started advocacy work in earnest.
I took the mantle as the Chairman of the group when Francis passed away in 2012.”
Q: How has the organization grown? How many members do you currently serve? How many are GIST patients?
A: “The organization has grown in leaps and bounds ever since. We take pride in being the most active patient-driven GIST organization in Africa. Our trademark “Cycling To Stomp Out Cancer” event has been held in Nairobi for the last four years. This outdoor event has enabled us be visible in the media as well as the general public. We have been able to lobby the Kenyan Government on a number of occasions to respond to our needs.
Most importantly, we have put our patients first by holding general meetings every year to bring them all together, share our stories and encourage one another. In these meetings we usually bring on board experts to answer any questions that might arise. Family members of GIST patients also come together and share stories.
We also provide materials designed to educate our patients on the basics of GIST. This initiative has equipped our patients with the necessary information to enable them to live a comfortable life.
We currently have about 650 patients, 80 who have GIST.”
Q: What would you like to see for the future of the organization?
A: “I would like to see Henzo Kenya grow to become the voice of all GIST patients in Africa, a pan-African patient-driven advocacy group that knows no boundaries. I would like to see us mentoring other GIST groups in Africa and becoming the unifying and uplifting GIST group in the continent.”
Q: What kind of help would you like from the international community?
A: “My kind request to the international community is to make more GIST medicines available. We have had access to Glivec free of cost through the GIPAP program for 13 years running. Many patients live a good life thanks to Novartis and The Max Foundation. However, there are a small number of patients who get resistance, and without access to second and third-line treatments, that becomes their sad ending.
I would also like to see GIST monitoring be affordable and accessible, and I wish for Henzo Kenya be part of the Global GIST Community.”
The Life Raft Group has already welcomed the organization into the global GIST community, extending information, advice and support. We facilitated an exchange of information with Henzo Kenya and other disease groups to share best practices and strategies for advocating for private and government support so that all GIST and CML patients in Kenya receive the treatment they need and deserve.
Henzo Kenya will participate in this year’s GIST Awareness Day activities, and will be represented at the New Horizons meeting.
We have begun to provide the group with informative materials. The LRG also will be working on creating easy-to-understand GIST literature, so that information can be accessible to patients with all levels of literacy.
Love from the global community reaches across oceans and continents in an effort to support all those who suffer from GIST.
