Right to Try
Our campaign has taken some significant steps forward in the past fortnight. When it was launched last summer, I would never have imagined that eight months later I would be ‘down the line’ with John Humphrys.
It has confirmed my belief that there are many others seeking the same goal, patients and families who are equally frustrated with the current drug development structures.
But the wonderful media interest has not just been a question of airtime and column inches; it has also provided an opportunity to launch something tangible so everyone can make their own personal commitment to the campaign. On 14th February Access to Medicine launched an e-petition to Government.
We are calling on the Government to give people with terminal illnesses the right to try drugs in the early stages of development. We believe this could be done in a variety of ways.
The NHS constitution (currently under consultation) calls upon doctors to be candid with patients about the risks of “doing nothing” in treating an illness. We welcome this call for candour, but for some patients they have no options beyond doing nothing. We believe that alongside this frankness patients should be given the option to try other avenues, as long as it is in full consultation with your doctor.
Specifically they should be given the option to try drugs licensed for other conditions- if there is a reasonable belief that it could help. Furthermore they should be able to give legally binding guarantees to doctors when agreeing to take medication under such circumstances.
The petition has already received well over 500 signatures of support and is providing an outstanding platform to raise awareness amongst people who might not otherwise have come across our campaign. So if you haven’t signed please do.
We have also launched a facebook page called Right to Try to provide another forum for people to share their experiences, stories and causes. It is vitally important to keep the momentum up as we approach Rare Disease Day on 28th February, a day that brings together hundreds of patient organisations from more than 60 countries worldwide.
It’s a day for raising awareness and a reminder to look beyond our own borders and remember this is an international issue and Empower will be represented at a Parliamentary event celebrating the occasion amongst the other important causes and organisations that work in this arena.