“I had the opportunity to meet with YB Dr. Lee Boon Chye, the Deputy Minister of Health Malaysia at the third-week of December 2018, to highlight and discuss about patients concerns and possible solutions to resume stable medication access, for cancer patients, including myself”, said Gan Li Li.
Li Li is a patient advocate representing Chronic Myeloid Leukemia (CML) and Gastrointestinal Stromal Tumor (GIST) community in Malaysia; she is also a CML survivor, living well and getting her treatment through Malaysian Patient Assistance Program (MYPAP).
MYPAP is made possible by public-private partnership, between Ministry of Health Malaysia and pharmaceutical company, managed by a global health organization, in providing optimal standard of treatment (TKIs, tyrosine kinase inhibitors) for CML and GIST patients. Currently, there are approximately 2, 000 CML and GIST patients benefitting from MYPAP nation-wide.
Back in October 2018, patient advocates from Max Family and The Max Foundation were notified about instable of medication supplies on the ground, by CML patients. Medication were dispensed for shorter timeframe – from one month supplies, to two-weeks, down to one week, and in fact, there were patients who were only given two-days medication. This situation has created much worries, concerns and uncertainties among patients and families.
“Access to treatment is access to life” – holding on to this motto as a patient support group, we reached out to YB Dr. Lee, as we believe he would do his best to support the patients.
We had an opportunity to have a face-to-face meeting with YB Dr. Lee. Key aspects covered in the discussion including patient concerns, on-the-ground challenges from low level of medication, compliance and clinical outcomes. We also covered conversation around roles of stakeholders, collaboration and partnership in cancer care strengthening as a whole. YB Dr. Lee was very attentive, courteous and in fact, a very solution-focused leader.
It is a noteworthy point to mention that two weeks after the meeting, medication supplies challenges for existing patients has been resolved. Thus, we would like to express our heartfelt gratitude to YB Dr. Lee for his prompt action taken.
“For me, circumstances like these are a great learning curve as it forces me to brush up on my advocacy skills and knowledge, being aware of the greater landscape affecting all the stakeholders i.e. governments, pharmaceutical companies, communities and for myself - self confidence and awareness. Daunting but fulfilling, let’s start to win the small battles together.” - Gan Li Li