Multiple Myeloma Program Provides Care and Support
AMPATH’s Multiple Myeloma (MM) Program provides comprehensive myeloma care services. The one-of-a-kind program delivers awareness talks and training of health care providers to improve early-stage disease diagnosis. This presents better chances for better outcomes.
The program supports people with multiple myeloma who have undergone a socioeconomic assessment and need financial assistance to:
· enroll with the National Hospital Insurance Fund (NHIF), which caters for their treatment and follow-up costs.
· attend routine patient clinic visits by providing transport.
· participate in diagnostic, treatment, and follow-up processes by providing financial support.
The program created a support group for myeloma survivors and champions that regularly meets for health education, peer-to-peer support and more.
The program continues to build the capacity of MTRH in the care of myeloma. For instance, the MTRH laboratory is now able to perform the Serum Protein Electrophoresis test that has previously only been available at the commercial private laboratories.
In recognition of Multiple Myeloma Awareness month in March, Dr. Teresa Lotodo and Mercy Oduor, coordinator of AMPATH’s Multiple Myeloma program, share information about the disease and AMPATH’s program.
What is multiple myeloma and what are the symptoms or warning signs?
Support group for people with multiple myeloma
Multiple myeloma (MM) is a type of blood cancer that starts in the plasma cells, it is a chronic and progressive (worsening over time) disease and hence requires a long-term plan to help manage it. MM may not cause signs or symptoms for a long time and is often not found until it is advanced. Myeloma tumors can cause bone pain especially the spine or chest, nausea, loss of appetite, constipation, confusion, fatigue, damage to kidneys and other organs, weight loss, fractures, numbness, and body weakness, frequent infections and excessive thirst.
What services/care does the AMPATH multiple myeloma program offer to patients and their families?
The AMPATH MM Program is a care program that was established in 2012 with a mandate to find, link and retain in care myeloma patients seeking care at the Moi Teaching & Referral Hospital (MTRH). The program was established through the support from Celgene Corporation and now it is being supported by Bristol Myers Squibb Foundation. The program provides the following services:
Diagnostic services: The program assists needy myeloma clients to get a timely diagnosis by paying for the diagnostic tests.
Treatment services: The program enrolls myeloma clients with the National Health Insurance Fund (NHIF) which takes care of their treatment and follow-up costs. For the patients whose NHIF is depleted, the program has been providing drugs needed for the remaining treatment cycles.
Groups provide support and education.
Patient and caregiver’s survivorship services: The program created support groups for myeloma patients and their caregivers that regularly meet to connect patients for peer support, health talks on various aspects of myeloma, treatment and follow-up of patients, nutritional advice, how to manage side effects and treatment adherence among others. The program also organizes for health education talks with different specialists to enlighten patients and caregivers on living with myeloma.
Learn more about John and Emily, two patients living with multiple myeloma, and how the AMPATH program has helped them.
Training: The program carries out training to health care professionals on various myeloma aspects to increase the index of suspicion for myeloma.
What are the biggest challenges to diagnosing multiple myeloma?
The program has experienced various challenges. First, there are no screening services to identify multiple myeloma at early stages. Most patients are diagnosed with an advanced disease stage and hence poor outcome. In 2020, of the 68 newly diagnosed patients, 20 of them died and their mean time between diagnosis date and death date was 2 months.
Second, diagnostic investigations are limited in public health facilities. Patients have been forced to procure them in private commercial laboratories with costs not affordable to most clients. The MM program has always assisted people with myeloma who need assistance to pay for the diagnostic investigation costs. This has greatly reduced the turnaround time for myeloma diagnosis at AMPATH-MTRH. In January 2021, the program also assisted the MTRH laboratory to be able to perform one of the crucial myeloma diagnostic tests called Serum Protein Electrophoresis. This test is now available at MTRH and will be covered by the NHIF.
Finally, NHIF does not cover all diagnostic investigations. The NHIF oncology package becomes accessible once a diagnosis has been made and a plan of care developed. Also, NHIF only covers six cycles of the 1st line of treatment and four cycles of the 2nd line of treatment. Most myeloma clients have their NHIF depleted before they complete their treatment schedules. This has led to the interruption of treatment plans for most clients. The program has assisted a number of needy clients to enroll two NHIF cards (patient’s and the spouse) this allows them to use the spouses’ card once his/hers is depleted. In some cases, the two cards get depleted and patients have to pay out of pocket or abandon their treatment. For the clients with no spouse, their treatment is always interrupted in their earlier stages of their care and hence poor care outcomes.
What challenges has COVID-19 created for your patients and your program?
With the emergence of COVID-19, most clients were unable to visit health facilities for fear of catching the disease.
During the COVID-19 pandemic, the program devised ways of ensuring patients adhered to the prescribed treatment plan through routine phone calls, follow-up and providing transport to people who needed it. The program even increased transport rates to meet the rising transport costs. This saw improved adherence to treatment despite the COVID-19 pandemic. There was also an influx in the number of new patients enrolled compared to 2019.
COVID-19 also brought with it a stay-at-home directive that restricted movement which has had a major negative effect on the training aspect of the program. All the training sessions for the healthcare providers, survivors and champions were conducted online. A low turnout was recorded as this was a new venture, but at least patients were kept up-to-date on the developments and how best they can navigate during COVID-19.
What plans do you have for your program?
The program plans to develop a research component that is aimed at improving myeloma outcomes in Kenya for instance the program is currently working on creating a partnership that can allow the initiation of myeloma screening services.
Two recent publications in JCO Global Oncology feature the work of the AMPATH Multiple Myeloma Team:
Building a Sustainable Comprehensive Multiple Myeloma Program in Western Kenya