An informal survey was conducted with our ALK International Ambassadors, volunteers from various countries who are passionate about sharing their experiences with others. A total of 22 countries were represented in this survey. In addition to the US, European nations were well represented, as were Australia and New Zealand. There was a notable lack of ambassadors from China, Japan, South American, and African nations. Strong advocacy is still needed to reach patients in these countries.

Most ambassadors agree that they have an “OK” treatment plan from their country, however there was one ambassador who rated his treatment as unacceptable. This ambassador was very dissatisfied with his treatment, as he was limited to only chemotherapy as his first line treatment.

Most 1st line treatment for ALK Positive patients was Alectinib (90%). Crizotinib can be given as first line in Canada, India, South Africa, and Spain. Lorlatinib can be given as the 1st line treatment in France. Other options currently available globally are Ensartinib, Ceritinib and Brigatinib. As mentioned above, some countries gave chemotherapy as their first line treatment.

A majority of the patients believe their oncologist has experience in treating ALK patients. However, if the patients live in a more rural community, they felt the oncologist may not be well versed in ALK treatment options. Some feel the access to proper medication is limited by government funding, governmental approval, patient cost, or oncologist treatment approval.

Most of the respondents have access to next generation sequencing (NGS) via liquid biopsy or tissue biopsy.Some reported accessibility problems with these diagnostic tests even though the country does have NGS ability.Inconsistency of treatments within the same country is a problem globally.

Patients tended to be scanned consistently for monitoring, but some reported inconsistency in scanning, again highlighting the treatment variability within country.

ALK Positive and worldwide ambassadors advocate for strong patient treatment participation. Make sure you are a part of the decision making and speak up when you are unsure or unclear of why. “Knowledge is power!” (Francis Bacon). We are Stronger Together.

Author: Alice Chou

International Ambassadors Survey