Within the last two decades, we’ve seen some of the greatest advances in medicine in the arena of genetics. The completion of the human genome project in 2000 opened up a wave of genetic research aided by rapid advancements in technology. The theories that we’ve been hearing about for so many years are becoming real life medical science that will have a profoundly positive impact on many lives.
And this is just the beginning. Over the next few years, we hope that more advances will start to filter down into mainstream healthcare, so the individuals and families who live with the challenges of a genetic disorder on a daily basis can start to find more effective solutions for the management and treatment of their conditions. However, these advancements need funding so that they can actually reach the patients they were designed to help.
Such revolutionary advances in genetic medicine mean conditions that once meant a short life or one lived in pain can now be managed much more effectively or even cured. Unfortunately, NHS funding has not kept pace with this radical progress. One young chronic granulomatous disorder patient, aged 24 years old, was recently recommended for a bone marrow transplant. Put simply, it would help cure him of a life-limiting and life-threatening condition that causes serious recurring infection, lung problems and abscesses on internal organs. At 24 years of age he would hopefully live a long and healthy life. However, NHS England funding is only currently routinely available for patients up to 16 years of age and his transplant was denied. We are supporting his battle to have this treatment. The transplant would actually save the NHS years of future treatment for this young man. Commissioners must decide which is the wiser investment.