Merkel cell carcinoma (MCC) is an aggressive neuroendocrine skin cancer with a mortality rate 3x that of melanoma. Despite being a rare cancer, Australia has the highest incidence in the world, twice that of Europe and US. Those suffering from MCC are often elderly, with comorbidities precluding traditional aggressive therapy. Life-expectancy is low, there are no established therapeutic frameworks, and clinical trials are recommended as standard-of-care. Due to its rarity, patients/carers often have limited means of support.
To respond to this, the Australasian MCC Patient Advocacy Group (AMPAG) was formed as part of the Australasian MCC Interest Group (AMIGOs); both supported by the Australia and New Zealand Melanoma Trials Group. Consisting of patients/carers affected by MCC, AMPAG connects sufferers and helps focus the efforts of AMIGOs, ensuring patient voices are heard.
AMPAG has already provided vital research input into new MCC trials in development. It is establishing a website with links to related groups and convened two meetings in its first six-months of existence. The AMPAG Chair recently was first-speaker in a pharmaceutical adboard meeting, the first time a patient advocate had done this on behalf of patients with any cancer, and means that patients are represented in discussions. A letter sent to the Therapeutic Goods Administration, signed by an AMPAG representative, led to approval of a promising immunotherapy drug as first-line treatment for advanced MCC. AMPAG was also represented at the AMIGOs’ first educational symposium, conducted to educate healthcare professionals (HCPs) about MCC treatment options.
AMPAG is punching above its weight, having achieved many ‘firsts’ in its short life. With an active advocate as chair of this group, AMPAG continues to advocate for patient-focused priorities like lobbying for free PET scans, listing of effective drugs on the Pharmaceutical Benefit Scheme, and increasing education to HCPs/patients/carers – watch this space!