I remember the first patient I met with chronic myeloid leukemia (CML). It was 2007, and I had been working as a nurse manager at the Leukemia and Lymphoma department at Tikur Anbessa (Black Lion) hospital. I had been working as a nurse for 14 years, nine of which I spent with Hematology department. Little did I know at that time that I would spend the next 4 years of my life developing intimate relationships with almost 1000 CML patients across Ethiopia.
I live in Addis Ababa, the capital city located right in the center of the country. When I joined The Max Foundation in 2016 as their first and only program coordinator in Ethiopia, I was in my first-year operating theater nursing specialty program in college. Currently, I am studying for my Master’s in Public Health during the weekends.
Today, my role involves partnering with our local physicians who diagnose, monitor, and prescribe treatment to incoming and current patients. I spend time counseling and educating patients on their disease and treatment, and oversee our Max Access Solutions program operation and supply chain in Ethiopia.
Previously in our country, there were not many medical professionals that knew much about the diagnosis and treatment of CML and rare blood cancers. Throughout my career, I’ve learned every intricate detail of what CML patients face daily—from how the disease takes a physical and emotional toll on their bodies, to symptoms and reactions from a daily dose of treatment. I am often teaching physicians about their patients’ diagnosis and recovery.
I share everything I know so that every patient is treated with utmost care and precision.
We only have three Max physicians in the entire country, each manage hundreds of patients. That means our physicians don’t always have the time to personally answer each patients’ questions, and assist with their physical, social, psychological and emotional issues. I’m in constant contact with our patients, whether they live near the city or far in a rural area. They call and text daily, they send me holiday cards full of love and gratitude. They trust me with their fears, and share their hopes and dreams. We are like one big family.
Supporting each patient with deep empathy
My role is unique because I spend hours on the phone with patients. This is difficult and emotionally tasking social work that requires utmost compassion and patience, the skills that I’ve had to build throughout the years.
Many patients lack financial support, which leads them to make life-altering decisions that sometimes involve having to choose between accessing treatment or supporting their families. Women especially have the difficult burden of having to choose between treatment and bearing children. To have a normal pregnancy, patients must get off treatment and have access to constant monitoring to safely manage their health.
In our culture, social stigma with cancer is deeply rooted. I’ve seen many cases where husbands threaten to divorce their wives if they cannot bear more children. How do I convince a patient’s husband to allow her to stay on treatment in trade of building a family? My job is not to decide for our patients, but to try my best to educate them on their disease so they can believe that their treatment is important.
Among the challenges that I remember, I spent three months trying to convince a patient’s husband not to divorce his wife to have more children. They finally agreed to choose treatment over kids and now she is healthy and responding well to her treatment. She gives me a big, happy hug whenever we meet.
Not every family is open to change, and it’s been incredibly challenging at times. I’ve witnessed two patients pass away after stopping their treatment to build a family.
Through the hardships and achievements, my role working with patients has given me immense satisfaction and happiness. I am lucky to have had access to education and be able to share my knowledge with women and families living in rural areas who haven’t had the same opportunities as me. We don’t always speak the same language, and it can take weeks between translations and in-person visits to teach patients about their disease, have them understand the papers they’re signing, the possible treatment effects, and what their test results mean.
Hope and gratitude lead the way
Currently with the spread of COVID-19, I’m on the phone with patients almost all day long. A number of our patients who live in rural villages far from the clinic have not been able to travel to pick up their medicine. We’ve solved for this by partnering with two rural clinics more than 500 km away that are now able to safely provide treatment to patients.
In some ways the pandemic has sped-up our long-term goals to bring treatments closer to patients’ homes, reducing their financial burdens of transportation costs. We’re continuing to look for ways to support our patients in their financial and emotional needs.
I’m incredibly grateful to be in this role, it’s given me purpose. My dream is that we grow our patient support group to reach every patient so they have a safe space to talk about their disease. I also hope we can connect patients with donors to assist them financially and reduce the many barriers they face.