Access to Medicine: Why This Matters for the Childhood Cancer Community
Access to medication is becoming an increasingly important issue in childhood cancer care worldwide. While innovative treatments continue to emerge, many families face challenges in accessing them due to rising costs and limited availability. At the same time, shortages of essential medicines remain a concern in many countries, creating additional barriers to treatment.
These challenges contribute to growing inequalities in childhood cancer care. Although the problems may look different from one country to another, many patient organizations are facing similar issues.
Recognizing the need for greater advocacy in this area, Childhood Cancer International (CCI) established the Access to Medication Working Group. The group's goal is to better understand how access to medicines and treatment differs across regions and to empower patient advocates to become part of the solution.
"Education is the first step," explains Anita. "We want our members to understand how the system works, who the key stakeholders are, and why access differs around the world."
Patient advocates bring a unique perspective to these discussions. While healthcare professionals and policymakers play critical roles, families and survivors understand firsthand how barriers to treatment affect people's lives. Their voices can help identify gaps, raise concerns, and advocate for meaningful change.
The working group aims to bring together representatives from different continents and countries to share experiences and learn from one another. By understanding local challenges and successful approaches, members can strengthen their advocacy efforts and help reduce inequalities in access to care.
The initiative grew from conversations among advocates who realized they were facing many of the same challenges, even if at different levels. Historically, access to medicines had not been a major focus within CCI, with most advocacy efforts concentrating on psychosocial support and social care. However, as access challenges continue to grow, the need for patient-led advocacy in this area has become increasingly clear.
Led by Edith Grynszpancholc, who has extensive experience advocating for access to medicines in Latin America, the working group is building a global network of advocates committed to ensuring that every child has access to the treatment and care they need.
Members of the Access to Medicine Working Group
Anita Kienesberger - leader
Edith Grynszpancholc - leader
Diego Parada Herrera - member
Harun Sabic - member
Ira Soelistyo - member
Carmen Auste - member
Akua Sarpong - member
Daniel McKenzie - member
