Seeing orange: a quick recap of 2017
A groundbreaking year helping patients access the latest approved medicines
Last week we had our quarterly planning day. Since it was our first one for the new year, we took a moment to reflect back on 2017 – and what a year it was!
The biggest one for us though was the number of patients with amyotrophic lateral sclerosis (ALS) that we were able to help access and purchase edaravone, a treatment shown to slow the decline of loss of function. It was the first time in over two decades that the FDA had approved a medicine (Radicava) for this devastatingly fatal disease. Since clinical trial results seemed to suggest that the treatment would be more effective during earlier onset of the disease, patients from all over the world understandably wanted to get their hands on it as soon as possible. Thankfully we already had a trusted means of sourcing and delivering edaravone from Japan, where it already been available for two years (produced by the same pharmaceutical company and under the market name ‘Radicut’). We were able to ship it to ALS patients all around the world in a matter of weeks, and at almost a quarter of the US market price. Our patient support phone line got very busy! It was a hectic few months, and we wouldn’t have had it any other way.
ALS was of particular significance to us on a personal note. All of our three co-founders have a very close connection to the disease. Bernard Muller is an ALS patient himself, whilst Jamie Heywood’s brother Stephen passed away from the disease in 2006 at the age of 37; Sjaak Vink lost a very close friend Garmt van Soest to the disease in October. There is still no cure for this awful disease, but you can bet that as soon as there is we’ll be doing everything we can to help patients access it straight away worldwide.
2017 saw us helping more patients than ever – not just people with ALS, but multiple sclerosis, epilepsy, various types of cancers and other neurological diseases – people who would have otherwise struggled to gain access to much needed new medicines. We’ve now delivered medicines to patients and doctors in 53 countries.
To our partners, investors, friends and family – thank you for supporting our mission and sharing your stories. We couldn’t have done it without you. We read all the letters and comments we receive from you, and wanted to share one from a family member of a patient, because it’s messages like these members of patients like this one that make it all worth it:
“My father is very weak because of the side effects from the medicine but he is ok, thank God. His white cell count lowered from 190,000 from the beginning of the treatment to 10,000 today!! He should be discharged from the hospital next week :) The doctors and us are so happy and hopeful.”
We have some exciting developments that we’re looking forward to sharing with you, including new medicines, new partnerships, more support for patients, and more resources. Here’s to 2018 being even bigger and bolder year as we continue our mission to improve access to the best medicines at an affordable price...bring it on!