Mrs Nicola Miller
Cofounder and Trustee, Action for XP
Advancement in clinical practice and specialised textiles/materials have greatly improved the quality of life and health outcomes for many in the xeroderma pigmentosum community — but not all.
Consider the phrase, ‘we are in the same storm, but not in the same boat.’ It aptly describes inequity within healthcare, specifically within rare diseases.
As Action for XP, supporting patients globally, we see this firsthand within our xeroderma pigmentosum (XP) community.
A medical and technical revolution
Pre-1980s, the average life expectancy for XP patients was their early twenties. Universally, there was little to no practical intervention to protect an individual’s skin from harmful UV rays (without total light avoidance). Clinical monitoring, early detection and treatment of skin cancers varied from region to region. Prognosis was poor, disease management options were limited, and lives were cut short by skin cancer.
Fast-forward to 2022, and the picture for individuals with XP is considerably brighter. In the UK, an NHS multidisciplinary National XP Service puts early detection and treatment of skin cancer at the forefront. Innovation in textiles and specialised clothing means that individuals enjoy time outside — safe from UV. Individuals can live, work and be educated in safety thanks to technical window films and UV free lighting options — all checked with handheld UV monitors — allowing individuals to manage personal risk in real time. None of these interventions were at the disposal of our families 40 years ago.
Unfortunately, this is still not available to all.
Fast-forward to 2022, and the picture for individuals with XP is considerably brighter.
Inequitable access: the community left behind
Weekly, we receive distressing emails of desperation from families who lack many — or all — of the above.
Progress has not been equally felt. People within our global community have been left behind in this medical and technological revolution. For many, economic and geographical factors mean that XP remains a life sentence.
For them, there is no access to clothing with advanced UV protective technology. They do not benefit from the rigorous clinical monitoring enabling early detection, nor from advanced surgical techniques that limit tissue damage and scarring.
An international call to action
There is, of course, no quick fix. We cannot resolve matters of governmental and economic instability that result in less evolved healthcare systems quickly. We cannot overcome geographical, financial, educational and cultural barriers that impede equity in healthcare overnight. But what we must do, is recognise this disparity.
Collectively, we must ensure that this section of our community knows that we won’t stop until we leave no one behind.