PRESS RELEASE: Brits with ALS, MS and cancer need not wait years
Last updated: 01 November 2019
Brits with ALS, MS and cancer need not wait years – patients can now legally access the newest approved medicines from overseas without any hassle.
November 16, 2017
Social impact startup everyone.org helps patients import the latest approved medicines from other countries legally, safely and securely, with 11 UK patients already benefitting.
Every year, groundbreaking new treatments are delayed reaching the people they can help. The US’s Food and Drug Administration (FDA) approved a world-first treatment called edavarone (Radicut / Radicava) for amyotrophic lateral sclerosis (ALS) on the 5th May 2017, as did Japan two years earlier, but to this day it is still not available to UK patients. But 130 ALS patients have been helped by everyone.org, including 8 in Britain, to acquire this cutting-edge medicine this year alone. Drug delays are common and can stretch up to years, but the shocking truth is that these delays are arbitrary in many cases. The pioneering new social enterprise everyone.org is challenging this and giving patients new hope.
"I witnessed a loved-one fight hard to gain access to an FDA approved medicine that could have saved his life,” says Dutch CEO and founder Sjaak Vink. “Market access delays for medicines only punishes patients and it's a complex issue, but everyone.org is making a huge step in the right direction by providing a safe and efficient way for individuals to legally purchase the latest approved medicines – something which was very difficult to achieve before. Patients need these treatments; they don’t have time to sit around and wait. It’s about freedom of choice. If these drugs are approved and deemed worthy for US patients, than any patient who needs the treatment should be able to access them – with as little hassle as possible.”
Having helped many ALS sufferers, the company has set out to help multiple sclerosis patients with a drug called ocrelizumab (Ocrevus) – the first-ever treatment for primary progressive multiple sclerosis (PPMS) to receive FDA approval in March this year. The drug also received Australian approval in July, but is still not available in the UK. There is currently no approved medicine for PPMS, for a disease that affects 100,000 people in Britain alone, an estimated 15% of which will have PPMS.
Unlike wholesalers and pharmaceutical companies, (currently the main suppliers of clinics and hospitals) who are not permitted to sell medicines to individuals, everyone.org is a registered intermediary that can legally deal directly with patients and their doctors on ‘named patient basis.’ It is currently the only organisation in the medical industry worldwide who is doing this and has shipped over 1,500 medicines to 50 countries in 6 continents.
Qualified pharmacist and everyone.org Patient Support Manager Marta Enes adds, "the requests we receive from patients are sometimes just heartbreaking. They often tell us how grateful they are that we exist, that we can help them – some have been looking for ways to import a medicine for a long time before they find us." Registered with the Ministry of Health in The Hague (The Netherlands) as an independent intermediary for medicines, the Amsterdam based company has a staff comprised of 14 nationalities and includes doctors, qualified pharmacists, lawyers, and medical industry experts.
Acclaimed investor and healthcare innovator Esther Dyson, whom the New York Times once called the tech industry's 'most influential woman', states, "The reason I became the first angel investor and supporter of everyone.org was because I firmly believe this patient platform needed to exist. Before them, there was simply no other practical solution for individuals who needed access to newly approved treatments outside of their country."