Today, 30 March 2020 several patient organisations chose to send a letter to Audentes and Astellas. #earlyaccess4all

The MTM Community Letter reads:

Dear Ms. Holles,
We send you this letter with the utmost urgency. In light of the events that are occurring around the world, with the SARS-CoV-2 epidemic that is spreading exponentially in all countries, we need our loved ones with Myotubular Myopathy as strong as possible in order to overcome this enormous obstacle that will last for weeks and months. This first wave of COVID-19 will be very hard to beat and experts warn that a second wave at the end of the year may be even worse.
Today more than ever, compassionate use is extremely urgent and a necessary priority. There are many individuals living with Myotubular Myopathy who are unable to participate in a clinical trial, due to age, geography, or other exclusion criteria. And even those who would normally have the option to participate in a trial may face extraordinary delays or obstacles given the current pandemic.
Therefore, we are formally requesting that Audentes, as a truly BOLD measure, immediately implement an Expanded Access Policy that enables a pathway for treating patients with x-linked myotubular myopathy with AT132 via compassionate use.
We share this letter with you, as well as with the entire Board of Directors of Audentes Therapeutics and the Direction of Astellas Pharma. You know that people with Myotubular Myopathy endure very difficult, sometimes critical situations. Not all of them make it and we have lost too many precious warriors. Too many. Today more than ever we need access to compassionate use. We appeal to your goodwill to make this possible.
We are at your disposal and await your response in order to initiate the Expanded Access program. Thank you very much.
Yours sincerely,
Àlex Roca, President of Pequeños Superhéroes. This letter is signed and backed by,
Fimm – Famiglia Italiana Miopatia Miotubulare e Centronucleare Odv-Ets, Italy Fundación Weychafe, Chile
Fundacja Oswoić Miopatie, Poland
Guerreros Miotubulares, Argentina
Heróis MTM Brasil, Brazil
MTM – CNM Family Connection, United States of America Myotubular Trust, United Kingdom
Pequeños Superhéroes, Spain
Where there ́s a Will there’s a Cure, United States of America