Youth Advocates Aren’t Waiting to Shape Health Policy

By Neil Betteridge

In Europe, young patients and health care professionals have decided that now is the time to seek better health policies. I saw this first-hand at February’s #RARE2030 rare disease policy conference.

The conference addresses the future health needs of the 30 million or so European citizens affected by uncommon conditions. This year, it also showcased the power of youth voices.  As befits a “Foresight Programme,” representatives of the Youth Citizen Group provided the patient perspective to the 1,100 online participants.  

Presenting their Young Advocates video in support of the policy recommendations being launched, the group sent a powerful message. In their own words, “We are the next generation of patients, doctors, nurses, policy advisors and policymakers.” 

Indeed, spotlighting youth voices is a pattern emerging across Europe. Young cancer patients and survivors are now mobilising as Youth Cancer Europe. As one of their recent social media posts noted: “Treating adolescents with cancer is very different from treating cancer in adolescents.”

And within the European rheumatology society EULAR, the patient advocacy network PARE has, for some years now, been developing Young PARE. With society so often mistakenly viewing arthritis as something affecting only older people, it’s critical for young rheumatology patients to speak out. Alongside the network of young clinicians and researchers in rheumatology, EMEUNET, this provides a united voice that can only strengthen advocacy efforts going forward.

This “youth movement” is also smart enough to know that sometimes a broader, louder, collective voice is needed to accelerate positive change. The European Patients Forum has thus established EU Young Patients to give a voice to young people with chronic conditions in Europe.   

Established voices have long dominated the policy space.  But rare disease advocates, it seems, are proving that youth advocacy won’t be a rarity any longer.

As one wise clinician in GAfPA’s network recently remarked, “I don’t know what the future may hold, but I know who holds the future….”

Neil Betteridge leads the European division of the Global Alliance for Patient Access.

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