My name is Kiana. I am 24 years old, a post-graduate filmmaker, amateur rapper and nominated as one of the #30under30 inspirational women in Scotland 2017.   

I also have a condition called SMA, [Spinal Muscular Atrophy] that causes me to have weak muscles – I explain SMA in my video here.

For the first time in the history of SMA, we have an FDA approved treatment.

One that has proven to be life-saving and life-changing for those who have had access to it. 

This treatment is Spinraza. It costs $750 000 in the first year and $350 000 in subsequent years, for the entirety of the patient's life, or until another treatment is found. 

While a handful of countries have approved Spinraza, many countries are still to process the approval, some have rejected the drug and hundreds of thousands of people do not have access to this treatment. The price is most certainly a substantial reason for this. 

We are on the verge of future breakthrough treatments for SMA, but currently Spinraza is the only hope for many people.

Spinraza is being called the most expensive treatment in the century - perhaps in history. While we appreciate the company's efforts in making this treatment and harvesting the technology, we will not accept barriers to this reaching the people who need it most. 

Biogen are making a profit from this drug already.

Meanwhile, children and adults with SMA are dying, and losing motor function every minute. Time is a luxury we don’t have.

Medical knowledge must serve the people and we are entering an era where we have the technology to save and improve lives. But these innovative technologies are entering the market with a heavy price tag. 

I know we have a solution and we have a choice. 

Demand that Biogen makes each dose of Spinraza $10 000. While this is still not cheap it will allow greater access and better use of government resources.

Our lives, happiness and the right to move our arms and legs are priceless. If you want to understand the importance of this drug for those with my condition, read my blog. 

Sign, share, and fight with me.

#Spinraza4all