We have extraordinary medical technology and knowledge in the 21st Century.
We have the power to help countless people yet there's always a price tag attached to the privilege of health. And so many continue to die or suffer because of reckless capitalism.
There is currently no legal limit on the price of medication - no matter how life-saving or urgent the need.
FDA approved the first ever treatment for SMA in 2016.
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.
Zolgensma which is a one time gene therapy injection for SMA, was approved in 2018 , overtaking Spinraza as the world's costliest drug at $2.1M.
Other drugs soon to be out on the marker will follow the same pricing pattern, unless something is done.
I started this campaign, out of desperation and hope, from the corner of my bedroom. I've had success and bumps in the journey - I'm now working towards establishing my own NGO campaigning for equitable access to all new life-saving/changing medication.
Keep tuned and take action now!