Plan A – negotiations between the NHS and Vertex - have clearly failed and today we are launching Plan B on Orkambi.
Plan B is calling on the NHS to buy a generic version of Orkambi to treat all eligible patients. To do this the government need to use a power in the Patent laws called Crown Use License (a form of compulsory licensing which would allow other companies to tender to supply NHSE). Quotes have been received at a price of around £5,000 per patient, per year, and there are several companies already making the chemical compounds for research purposes.
A group of CF parents and an organisation called Just Treatment wrote to the government at the end of last week with a technical submission on how a Crown Use License could work for Orkambi, ahead of today’s debate. Read both documents here:
This is a call on Matt Hancock and Theresa May to act to break the deadlock.
This is a credible option in a situation where we really have run out of road. Look at what the NHS are doing with the mass trial for PreP, a drug it couldn’t afford to buy at list price. If a creative solution can be found for a drug that helps patients to avoid contracting HIV, then it MUST be done for patients who cannot avoid their CF.
We will be lobbying UK government, NHS England and the Health and Social Care Committee, and are launching a media campaign using the above hashtags. A series of videos will be on social media, and a Voting Poll on https://act.justtreatment.org/planb/. If you want to support our campaign further instructions and material will follow. We’d like you to make your own videos too, with the lines "Plan B on Orkambi" and "Let Them Breath".
Vertex is content to wait for NICE reform, which may or may not come as result of a review, which would not report before the end of the year, more likely in 2020. And will it satisfy them then? All we know for sure is that our loved ones will suffer irreversible damage in the time it will take to find out and people will die.
We are not waiting.
We are demanding Plan B now!
Dr. Jeffrey Leiden & Vertex Pharmaceuticals
Prioritize global availability of CF medicines now and in the future
Today, 28th January 2019, we have written to Dr. Jeffrey Leiden and Vertex Pharmaceuticals to urge them to 'make it a personal and corporate mission to bring life and hope where there currently is fear and early death. Prioritize global availability of CF medicines now and in the future.'
Our letter is signed by Cystic Fibrosis health professionals from around the world, who are watching patients decline without access.
It is also signed by Patient Advocates from organisations around the world, who are desperate for a better future, to receive a reduction in the suffering we and our children face now and every day as health deteriorates.
CF SUPPORT GROUP AT A GLANCE
Cystic Fibrosis is the UKs most common life-threatening genetic condition that affects the lungs, digestive system and other organs. The build-up of mucus in the lungs causes chronic infections, meaning that people with cystic fibrosis struggle with reduced lung function.
There is no cure for CF, however a portfolio of precision medicines have been developed by Vertex Pharmaceuticals that tackle the underlying cause of CF rather than just managing the symptoms.
Vertex's first medicine, Kalydeco is effective for approximately 520 people with CF in the UK who have a specific gene type mutation. Kalydeco is funded on the NHS and is available for all that would benefit from it.
Orkambi is Vertex's second medicine and is effective for approximately 3,000 people in the UK. However, Orkambi has been denied for funding on the NHS and is not available to patients.
Orkambi is available to patients in Austria, Denmark, France, Germany, Luxembourg, the Netherlands, Italy, Ireland, Greece, and the United States, but not the UK.
Vertex, and other pharmaceutical companies, have improved medicines in development. Such as Symdeko and 'triple combinations', that will be more effective and treat a greater number of patients with different genetic mutations.
We believe these medications should be available to all that would benefit from them. We will campaign relentlessly until all people with Cystic Fibrosis have access to precision medicines.
The UK Government must take responsibility for negotiating an agreement as soon as possible
The drug company, Vertex, must ensure fair and responsible pricing for a deal to be agreed
The UK Government must acknowledge the importance of finding a solution that guarantees we are never put in this position again for the future pipeline of treatments for cystic fibrosis
WHAT CAN YOU DO?
We need your help
We will only achieve our goal of precision medicines for all people with Cystic Fibrosis if we all work together as a community. As a rare disease, we need everyones help to get our voice heard. If you are affected by Cystic Fibrosis, or a friend or family member of someone who is, we need your help.
Below are some actions you can take. These simple actions will make a huge difference.
Contact Your MP
The most important action you can take.
We need the political pressure from MPs to secure funding for these expensive drugs.
Please write to your MP, phone their office and meet your MP.
Tell Your Story in Local and National Press
Tell your story
To keep our campaign current, and in the public eye, we really need to keep our story in the Press.
Many of our families have spoken with local newspapers, tv and radio shows, but to encourage more coverage - we need more families who would be willing to talk about Cystic Fibrosis, how it impacts on your lives and loved ones, and why you think that precision medicines should be made available in the UK.
Each new perspective gives the press a fresh approach or reason to cover the story.
Don't worry - you don't need to be an expert - we can guide you through!
If you would be happy to be interviewed, please click the button below to fill out our form, and we will try to organise some coverage for you, or one of our campaigners will contact you when a journalist is looking for someone in your area.
Tell your Friends and Family
Expand our reach
We need to spread our story. Please tell your friends and family about Cystic Fibrosis and our campaign for precision medicines.
Ask them to share your Twitter, Facebook and Instagram posts about our campaign. We need a wider awareness of our campaign.