Background and Context:
In the diagnosis and treatment of Chronic Myeloid Leukemia (CML), there is a significant need to increase awareness among patients and physicians of the importance of disease monitoring, increase understanding of PCR test results and improve access to testing. PCR testing is generally one of the most sensitive ways to diagnose CML, and it is one of the most reliable tools for monitoring the disease. Because CML usually requires lifelong treatment, regular monitoring for disease progression is critical to achieving positive outcomes. Many people living with CML around the world do not have access to this technology.
Aim:
In an effort to better understand barriers to accessing PCR testing, The Max Foundation embarked on a research project involving advocates in Africa, Asia-Pacific & Latin America. 35 advocates from 29 different low- and middle-income countries participated in this research.
Strategy/Tactics:
A survey was implemented to collect demographic and PCR testing information in advocates’ countries. A focus group followed to collect detailed information as well as a range of opinions regarding barriers to PCR.
Outcomes/What was learned:
Most participants became patient advocates through a desire to give back and change the system. Participants were motivated to fight for a world where people living with CML have access to treatment, education, and diagnostics.
Patients lack knowledge or information about PCR testing. Education and patient friendly information is important to improve patient understanding and long-term treatment compliance.
PCR testing is expensive and may pose considerable financial hardship for patients.
Access to testing must be achieved through partnerships with physicians, laboratories and national health authorities. Pressure on policy makers may be a more sustainable method for increasing availability and decreasing the cost sometimes.
Patient advocates should identify “up and coming” key opinion leading physicians and seek their partnership and guidance regarding strategy for advocacy.