People of AMPATH: Multiple Myeloma Program

Every year in March, the world commemorates Multiple Myeloma Action Month. During this month, individuals and groups are encouraged to take actions that positively impact the multiple myeloma community. This year the campaign's theme is "What's Your #MYeloma STORY?” Healthcare workers supporting the AMPATH Multiple Myeloma Program and a caregiver of a patient share their stories.

The AMPATH Multiple Myeloma program activities are fully supported by funding and collaboration with the Bristol Myers Squibb Foundation (BMSF) Global Cancer Disparities (GCD) Africa Program through the AMPATH partnership, which includes Moi Teaching and Referral Hospital (MTRH), Moi University and a consortium of academic health centers around the world led by Indiana University.

Multiple myeloma is a type of cancer that begins in plasma cells, white blood cells that are important to a healthy immune system. Over time, myeloma cells collect in the bone marrow, forming tumors in many of the body’s bones. These tumors may keep the bone marrow from making enough healthy blood cells and may weaken the bones.  While the causes are not fully understood, it is more common in older people, especially men. Some common symptoms include bone pain, weakness or fatigue, weight loss, frequent infections and frequent urination. 

Dr. Teresa Lotodo, Lecturer and Pathologist, Moi University/MTRH/AMPATH

I joined the AMPATH Multiple Myeloma Program in 2019. This was my first time as a principal investigator, and I approached this role with a lot of anticipation and uncertainty. Mercy was kind enough to guide me into my role. I was able to get to understand the staff that we have and saw a need for a clinical hematologist and hence approached Dr. Beatrice to join the team. It has been a cohesive approach to patient care. Each staff member has been encouraged to give ideas on how they can improve patient care and research activities in the department.

The interaction with healthcare professionals and community health workers during the outreach activities to the county health facilities under our training pillar has helped me appreciate the gaps in human resources, test availability and referral process in our Level 4 and 5 facilities.

I like participating in the patient support groups because it helps me understand the patient journey and what we need to do as a program to enhance patient support in terms of finances and psychosocial support. We are looking forward to starting a welfare fund for the patients who cannot sustain care over and beyond the support the program is giving.

Our goal is to be the center of excellence for myeloma care in the region and be mentors to other healthcare workers through our virtual ECHO (tele-education and mentoring) platforms, dissemination of information in conferences and journal publication of our work.

Mercy Oduor, AMPATH Multiple Myeloma Program Coordinator

I am a health promotion officer with a specialty in public health. Multiple myeloma is the second most common blood cancer in Kenya and represents 1.8 percent of all cancers and 10 percent of all blood cancers. It is highly treatable, though low survival outcomes are still seen in Kenya.

The AMPATH Multiple Myeloma Program at Moi Teaching and Referral Hospital’s Chandaria Cancer and Chronic Diseases Centre supports screening for multiple myeloma and treatment for those that are diagnosed. Advocacy for early detection and access to therapies is key for better outcomes.

Over the period that I have worked with the program, I have seen myeloma clients getting their treatment plans disrupted due to depleted National Health Insurance Fund (NHIF). Because there are fewer cancer centers, patients travel long distances to access health care services and, in most cases, they are not able to afford the transport and accommodation costs that are needed. Most patients are treated with a drug called bortezomib as part of the regimen. This requires them to travel to the health facilities on a weekly basis. Most clients go through unique psychosocial needs in managing this chronic condition.

The funding and collaboration with the Bristol Myers Squibb Foundation (BMSF) Global Cancer Disparities (GCD) Africa Program through the AMPATH partnership has helped needy myeloma clients routinely get health care services by providing transport reimbursement and enrolling them with the NHIF.

The current challenge for the program and the patients is access to the second line of treatment for myeloma clients that have relapsed on the 1st line treatment protocol. Increasing access to this can help change the story for myeloma patients in Western Kenya.

Austin Omondi, Clinician for the AMPATH Multiple Myeloma Program.

My main role as a clinician is to attend to myeloma patients every day. I have been doing this for the past 3 years. At first, I only saw a few patients in the clinic, but the numbers have kept rising over time. This is a good thing since healthcare workers can flag myeloma symptoms and refer patients appropriately. However, there are still a lot of challenges in myeloma care. Many of the patients are elderly, are retirees or on the edge of retirement and the disease compromises their functional status significantly. The few energetic working individuals are not maximally productive due to the disease burden. Myeloma symptoms mimic other conditions, such as arthritis, causing a delay in diagnosis.

The financial burden associated with the long-term treatment of multiple myeloma takes a toll on the patients and their families, and can contribute to psychosocial distress. The patients have to contend with the side effects of the medication.

There is need for continuous advocacy to create awareness on myeloma to ensure early identification and prompt referral to improve treatment outcomes. The government should have an inclusive insurance package for the diagnosis and treatment of myeloma.

Diana Flora, Biostatistician/Monitoring and Evaluation Officer

My day-to-day work involves everything to do with data, including: the development of data collection tools; monitoring data being collected for any data quality issues; reviewing data to check for any emerging trends; analysis and evaluation of clinical findings; and sharing findings through publications and manuscripts. A typical day for me depends entirely on what stage the program/study is at. I enjoy being involved at every step of the clinical study and the fact that new ideas are always welcomed and invested in by the program makes me tap into broader and newer data niches.

My experience has been quite a journey of learning and application of new skills, while at the same time being a critical thinker. This has made me stay on my toes in terms of keeping up with any emerging trends in the data world. I am currently working on how to introduce AI in predicting the overall survival of multiple myeloma patients. I can’t wait to share the findings with the world.

Indagala Ndenga, Program Nurse for the Ampath Multiple Myeloma program

My main role is to attend to myeloma patients every day who visit the facility or call through the program phone. This is my second year in this role. Through continuous medical education, we have been able to sensitize different departments and hospitals. Now healthcare workers can flag myeloma symptoms and refer them appropriately.

However, there are still a lot of challenges in myeloma care. The majority of the patients are elderly and come from distant places. They have a challenge in reaching the facility due to financial constraints and the program is unable to sustain paying for their transport costs.

Myeloma symptoms can present like other diseases which makes diagnosis challenging. This has been mitigated by embracing the wholistic approach in assessing the patient, and doing all the relevant baseline investigation on the first visit.

We ensure that the clients who need support services such as counselling sessions, palliative care and the use of rehabilitative aids receive them. Through the establishment of patient support group and ambassador forum, we are glad that many of the patients’ concerns are raised and addressed promptly.

It’s so encouraging to see clients return the mobility aid after recovery, or having achieved remission and on maintenance treatment or drug holiday.

Yvette Lorraine, Social Worker

People with multiple myeloma may have a great healthcare team that’s working to support them, but once they leave the hospital and go home they may feel isolated. As they come to terms with the diagnosis and the implications, they are bound to experience worry, anxiety and stress.

To support our patients emotionally, the AMPATH Multiple Myeloma social worker created support groups to help patients navigate through their journey. In these support groups, patients learn to communicate better with their loved ones and express themselves better to overcome the feeling of loneliness and helplessness.

I recall in one of the support groups, a patient said, “When I first attended this support group, I didn’t know what to expect. I thought it will be people meeting to feel sorry for themselves, and I was not sure this is what I wanted. But I stayed on, came back and now I really enjoy these sessions and I am always learning something new.”

It was very encouraging to see the transformation of the patient. In time she was able to reach out to others and to share her journey.

“For there is light if only we are brave enough to see it and be it.”

Janet Chepkemboi, Counselling Psychologist working with AMPATH Multiple Myeloma Program

My main role, with the help of the clinician and nurse, is to identify multiple myeloma clients in need of rehabilitation services and issue them with the recommended services or devices. These include mobility services, orthopedic, psychological, occupational, and psychotherapy care services. I also help the identified patients to navigate various departments such as palliative care, orthopedics, occupational health, nutritional counselling and psychosocial departments. I also identify, organize and coordinate psychological tele-counselling session for multiple myeloma patients and caregivers.

Recognizing psychological problems through effective assessment, with appropriate interventions and management, can prevent symptoms from amplifying and promote psychological wellbeing of these clients.

Patients with multiple myeloma can experience distress and anxiety at the time of diagnosis, during treatment, and if their disease relapses or progresses. Symptoms can include uncontrollable fear, worry, sorrow, trouble focusing or problem solving, muscle tension, irritability or anger. Stress can be a destructive force when it comes to myeloma.

Some of the services we offer to myeloma clients to help them cope with emotional challenges include family therapy, grief counselling, spiritual counselling and end of life care; as well as linking them up with a support group for peer-to-peer support.

Multiple myeloma is a chronic condition that calls for multidisciplinary approach in care.

Laurine Asira, Caregiver

I am a caregiver to my dad who is a multiple myeloma patient. I am also a myeloma ambassador. My dad was diagnosed with multiple myeloma in January 2016. This journey is not a walk in the park! We started off when his immune system was at its lowest and he could not walk, feed or talk. He had been an energetic man who was never sick. A simple task such as talking was an issue. I remember one time he was talking to visitors and in the middle of the conversation he got tired and slept.

After diagnosis, treatment was started and along the way we started noticing significant improvements. He started sleeping on his sides which he could not do before, strolling around, eventually going to the shamba, and back to his normal duties. As he adhered to the prescribed treatment, he got better every day. I would encourage anyone affected by multiple myeloma that this is not a death sentence. Rather, carefully adhere to the advice by the medics and slowly, but surely, you’ll be back to a healthy you.