June 19 is world sickle cell day and in this month’s episode, we are shining the light on sickle cell disease with Agnes Nsofwa the Founder and Executive Director of Australian Sickle Cell Advocacy (ASCA) and Amplify Sickle Cell Voices International.

Our conversation is on the challenges of advocacy, knocking on doors of manufacturers to have Hydroxyurea doses reduced for sickle cell patients, newborn screening and the power of connection.

“You have no control over who opens doors. We have knocked on many policymakers and organisations doors and people did not respond. But when I believe in something I don’t give up. Be persistent, be resilient, know when to stay back, then pick it up and keep going. Remember you can’t do advocacy alone have a team around you.” Agnes

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