Thalassemia and disease community meet with Rt Hon Sajid Javid

MEETING THE SECRETARY OF STATE

Earlier this year, Sajid Javid launched the Rare Diseases Action Plan for England, stating that he was ‘committed to levelling up our health system so that everyone, regardless of their condition, can receive treatment that is tailored to their needs’. Following on from this, the Secretary of State wished to meet representatives from the rare disease community to speak about health inequalities, research and innovation.

WHO WAS INVOLVED

There were 15 representatives at the meeting including rare disease healthcare professionals and industry representatives. Tiffany Hesson Equality, Diversity and Inclusion ambassador at Muscular Dystrophy UK, Kerry Leeson-Beevers, CEO of Alström Syndrome UK & Breaking Down Barriers, Roanna Maharaj Projects & Patient Advocacy Lead at UK Thalassaemia Society and Sarah Wynn CEO at Unique, the Rare Chromosome and Gene Disorder Support Group, were able to share the lived experiences of rare diseases. 

Megan Willis whose son, Edward, has SMA type 1 helped Tiffany, Kerry, Roanna and Sarah plan for the meeting. However, Edward was unwell on the day and Megan was unable to attend, highlighting one of the many challenges of having a child with a rare condition.

The group raised concerns about the health inequalities that existed for people from minority ethnic groups, the disparity in the quality and access to health services throughout the country, the small number of conditions tested for via newborn screening and the challenges in accessing rare disease data. They also noted challenges with transition, education and mental health support. For example, in securing education for children affected by rare conditions, parents often had to speak negatively about their child which impacted parents’ emotional wellbeing. The group also discussed with Sajid Javid the lessons which could be learned from Covid-19 and implemented in the rare disease sector.

NEXT STEPS

The Secretary of State informed the group of a Health Disparities White Paper due to be published later this year, and a review into ethnic inequalities for medical devices. Sajid Javid’s office has since followed up with members of the meeting for more information relating to these two areas.

Genetic Alliance UK welcomes the personal interest and commitment from the Secretary of State for Health and Social Care in rare diseases and look forward to continuing our dialogue with him