On a dry sunny Saturday in Addis Ababa, more than 100 people sat in an auditorium at the Black Lion Hospital, intently listening to a panel of experts. Representatives from the Federal Ministry of Health, doctors, local and international NGOs, and concerned citizens, gathered together for the first time, to discuss the challenges of treating cancer in the country. People in the audience were not ordinary people; they were people who were affected by the dreaded C word, cancer. Most of them, parents whose children were undergoing treatment, some of them cancer survivors themselves.
The gathering had been organized by the YeEthiopia Cancer Society as part of the global “Kids can rise above cancer too” campaign. Panelists took turns addressing the audience. As the representative for The Max Foundation, my message highlighted the value of the life of each child, and called for a ratification of the commitment of all stakeholders to improving conditions for the treatment of childhood cancer. Representatives of the Black Lion Hospital spoke on advances in the treatment of certain cancers, a representative of the International Network for Cancer Treatment and Research (INCTR) explained the ongoing collaboration with the hospital, and the representative of the MOH explained the impact of the United Nations (UN) political declaration on Non Communicable Diseases (NCDs) on the future of cancer in Ethiopia.
When the time came for audience participation, speaking in Amharic, a young man stood up. “Cancer has no answer” he said. He spoke eloquently and with great emotion. “Up until now I thought there is no cure for cancer, no solution, but now I am hearing that may be it is possible to get better”, he continued. This courageous father and others following, told the panel that they need better access to medication, they also asked for facilities within their own communities, so they would not need to travel long distances seeking treatment for their children. “When your child gets cancer, the entire family is paralyzed” voiced a mother.
The representative of the Federal Ministry of Health, listened and took notes, and showed the audience a document with the strategic framework for the prevention and control of NCDs. The fine doctors at Black Lion Hospital showcased a success story, the local program for treatment of CML, and explained that there are answers to many types of cancer. The CML success story gave everyone hope.
This was a week of first times in Addis; first time that a representative of the Federal Ministry of Health participated in a community meeting of this kind, first time representatives of the media were present, first time parents of children with cancer were able to voice their concerns and demand better services. It was also a week in which for the first time, molecular monitoring of cancer treatment was done anywhere in Sub-Saharan Africa. Earlier in the week, a pilot test had been conducted to determine the molecular response of four patients to treatment of CML. The importance of this leap in the ability of doctors to successfully treat patients was felt like a shockwave throughout the health care community of the country. The excitement of the veil of darkness being lifted and the anticipation of a full program coming soon made the Celebration of Life on that Saturday, October 8, that much special.
The day ended with a gathering of the CML Society of Ethiopia, a newly formed organization of CML survivors. Joined with The Max Foundation and their treating physicians, this tight knit community shared testimonials and appreciation to one another. In the background, the traditional coffee ceremony of Ethiopia was prepared with devotion by two CML patients. Two messages resonated throughout the meeting: “we achieve things because we never give up”, and “don’t be a passive patient, take charge of your future, work in partnership with your doctors, nurses and The Max Foundation, and a bright future is upon all of us”.
The meeting continued later than expected, no one wanted this day to end. When it was time to go home, it was clear to everyone, cancer does have answers, and the answers are in all of us.
Pat Garcia-Gonzalez is the CEO of The Max Foundation. Under Pat’s direction The Max Foundation is dedicated to accelerating health equity by delivering medication, technology, and services to patients facing cancer and other critical illnesses, focusing our energy on those who no one else is helping. Pat lives in Edmonds, Washington, where she raised her four sons.
At The Max Foundation, we’re also continuously growing our brand and messaging to reflect the growing needs of our global communities and the patients we support. Today, we’re announcing an update in how we communicate our model: our Wraparound Support pillar will now be called Patient Services!
Being a patient or I better call myself and others as a Spartan, someone who is fighting for something each and every day.” –Thilip Kumar Ragavan
We first met Thilip Kumar Ragavan in May 2014. He was a young chronic myeloid leukemia Spartan in the patient workshop at Hospital Ampang and was newly diagnosed with CML at that time, but the smile never left his face. Bright, vibrant, energetic, and positive – that’s Thilip.
In Latin America, the Maximize Life Campaign has become something like a tradition – a time when each patient organization creates an event or activity of their choice and powers it up for a campaign that takes on a life of its own!
13 patient groups from 11 Latin American countries joined this year’s movement, bringing together patients and caregivers with the purpose of telling the community that cancer is an issue, that ignoring it is not going to make it go away, and that the best approach is to learn about it in order to know what to do about it. From governments to the general public, everybody can get involved in figuring out how to treat cancer patients as members of society and not as a burden.
