Why Are Funds Needed?
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Vertex has replied to Carol-Anne Reilly's letter; see below.
I received a reply from Vertex to my open letter, and while it probably contains more than a bit of spin, it is definitely more positive than I expected. I am posting an excerpt of the reply here (the only part I have taken out are contact details for two UK-based Vertex officials. If any CF person wants to contact them for further information, I am happy to provide email addresses).
The reply is from Simon Bedson, Senior Vice President and General Manager, International Commercial Operations, Vertex.
In brief, he says Vertex is still hopeful of finding a solution; that over the past five months the company has proposed many different solutions to the HSE which would provide immediate access to Orkambi while ‘managing’ the financial impact on the Irish Government; and that Vertex is calling on the Minister for Health Simon Harris to intervene directly ahead of a decision by the HSE.
I know the more cynical among us will see this as pure spin, but I am being optimistic and taking it at face value that, as far as Vertex is concerned, the door is still open and no final decision has been made.
It really is beyond time they got back around that table to talk. We have plenty of CF reps who would happily contribute to the conversation.
Excerpt from reply from Simon Bedson, Vertex:
I appreciate your email and want to personally assure you that we are reading all of the emails, letters, posts and tweets from the Irish cystic fibrosis community. We understand your concerns and share your sense of urgency; we know that Evan and many others are waiting for us to reach an agreement with the government to secure funding for Orkambi.
Let me first tell you that people with CF are our top priority. We are fully dedicated to helping as many people with CF as possible and recognise that a medicine can only help people who are able to get it.
As you know, Orkambi is the first medicine to treat the underlying cause of CF in people – like Evan – who are 12 and older and have two copies of the F508del mutation. It is the result of approximately 17 years of research that cost billions of Euros. While Orkambi and Kalydeco provide hope for some, there are still two out of three people with CF who don’t have a medicine to treat the underlying cause of their disease. We have much more work to do to develop new medicines for these people, work that is going to take many more years and significant investment. Over the last five years, we put 83 percent of our income back into our research aimed at the development of new medicines to help even more people. The average reinvestment in the pharma industry is 18 percent.
Having continually engaged in good faith with the Irish government since Orkambi was given its licence over a year ago, we are disappointed that we have not been able to reach a solution, but we are hopeful that we will. We have been actively engaging with all parties throughout this process, meeting with the Irish government’s Health Service Executive (HSE) representatives six times in the past five months. Throughout that time we have proposed many different of innovative solutions that would provide immediate access to all eligible people, while carefully managing the budget impact for the government.
We are calling on Health Minister Simon Harris to intervene directly ahead of a decision by the HSE to help find a solution that provides immediate access to Orkambi in a way that enables continued investment in the research and development efforts that will allow us to help even more people with CF in the future. I am optimistic that we can find a solution if all parties work together.
Please know that as a company and as individuals, we remain committed to progressing in our fight against CF and giving it our all everyday. We are working hard in the hopes that Evan and other people with CF have the best chance for long and happy lives. I want you to know we appreciate you taking the time to reach out to us, and I hope I've been able to provide some context around where things currently stand.
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