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Agnes Nsofwa: Patients Must Have a Voice in Access to Medicines

Agnes Nsofwa/LinkedIn

Aug 18, 2026, 13:30

Agnes Nsofwa: Patients Must Have a Voice in Access to Medicines

Agnes Nsofwa, Clinical Care Coordinator at CaSPA Care, shared a post on LinkedIn:

”Missing Medicines Roundtable | Canberra AU

I was honoured to participate in the Missing Medicines Roundtable, focused on helping shape implementation of the HTA Review recommendations.

A clear message emerged: patients must be involved from the beginning, not simply consulted after decisions are made.

Key priorities included:

Faster access to medicines, especially for high unmet needs
Recognition of lived experience and quality of life
Better representation of rare diseases
Improved access to clinical trials and innovative therapies
Greater equity and better patient data

For sickle cell disease communities, these challenges can be even greater. Advocating for a rare condition that disproportionately affects culturally and ethnically diverse communities adds another layer of complexity.

We are not only fighting to ensure a rare disease is seen and understood, we are also working to ensure the voices of diverse communities are recognised within the health system.

For people living with sickle cell disease and other rare and chronic conditions, delays can have life-changing consequences.

Now we need to turn these conversations into meaningful action.

A special thank you to John Emmerson and the team at London Agency for bringing together such an important and timely discussion, and for creating space for patient voices to be heard.”

Agnes Nsofwa: Patients Must Have a Voice in Access to Medicines