Earlier this year TreatSMA met with a number of MPs, including deputy speaker of the House of Commons, to talk about the possibility of introducing a high cost medicine fund.

Many of the treatments being introduced to battle complex diseases are high cost due to the scientific advancements and research that is required as part of the drug discovery process.

Several meetings and discussions took place whilst Spinal Muscular Atrophy was very much highlighted in the media and Treatsma took this opportunity to potentially push it further when it comes to funding.

There has been a massive public outcry from the SMA community aswell as other rare disease communities about decisions made by NICE when high cost drugs are not deemed cost-effective to be used for the NHS. With the introduction of a rare disease fund which we have been discussing with MPs we are hoping this will address this need.

As manifestoes are being released this is exciting news for both the SMA and wider rare disease community. With many rare disease groups campaigning for access to treatments, we hope this is the first step in terms of any government acknowledging the costs associated with such treatments.

We are thrilled that our involvement in these discussions may have impacted on decisions such as this.

It’s early days and information is scarce, but we are cautiously optimistic, we shall wait and see.

To be clear, we are not supporting or advocating for any political party, we are however excited to hear that the politicians are finally beginning to acknowledge the funding issue with rare disease treatments. We will continue to push this forward and lobby MPs of all parties.

TreatSMA Team