“Unlike more common diseases, rare diseases, as you will all know, struggle to receive equitable funding, resources or strategy but rare and ultra-rare diseases are not as rare as people assume. There are over 6,000 rare diseases and, as the National Alliance for Rare Diseases notes: “Collectively rare diseases are not rare.” Every one of these diseases presents its own challenges and every single person with a rare disease has their own unique experience but together, patients, families, friends, campaigners and MPs like me must push to ensure rare diseases are not allowed to be pushed off the political health agenda.
3 million people in the UK are affected by one of these conditions: family and relatives too feel the often devastating impact of rare and ultra-rare diseases. From the psychological isolation to the difficulty of accessing diagnoses, medical examinations, medical drugs and treatment, the challenges and obstacles they face are immense. As well as the strain of the disease itself, there are many other, practical, implications such as the need to travel for treatment, difficulty with diagnoses and a lack of awareness and understanding about the disease.
I have attended a number of debates on this in Westminster. I say this not to convey my commitment to this issue but to say this: promises and statements of intent are simply not good enough. The fantastic campaigning work done has highlighted this issue and secured dozens of commitments from the government but the real test is in funding. If money is not made available for treatment or drug approval and for the rare disease strategy itself: it will fail miserably. On top of this, many people with rare and ultra-rare diseases face the degrading experience of ‘fit-to-work’ tests and cuts to social security to which they are entitled and which they rely upon.
My SDLP colleagues and I will continue to support you and take our guidance from you, from the people who know first-hand the challenges of living with a rare-diseases, both for those with the disease and those who care for them. Strategies and promises are all very well but they are meaningless without the right resources. We will continue to pursue the need for early diagnosis, and drugs with the Minister for Health in Northern Ireland; the Secretary of State for Health in London and the Minister for Health in the Republic of Ireland to ensure that the best possible medical framework is implemented to assist those with Rare and Ultra Rare diseases.”