Why the BIA chose Cystic Fibrosis Trust as our charity partner in 2013

In a few weeks time the Cystic Fibrosis Trust is holding its research strategy meeting at the Wellcome Trust. I believe the relationship between innovative companies and patient organisations is changing. So the BIA is trying something different with our charity partner this year. Traditionally the BIA has raised funds for our charity partner at our Gala Dinner in January, but I believe we as an association have more to offer to charities committed to medical research than simple tin rattling. Charities increasingly are important partners in research and many have played leading roles in funding projects that have underpinned breakthrough therapies. So as well as being the focus for our fundraising at our Gala Dinner, where Oli Lewington gave an inspiring speech (see video below), the Cystic Fibrosis Trust has presented its plans for a renewed research strategy to the BIA Board in order to gain insight from the commercial world about their direction of travel. http://youtu.be/4eEsQ-IWsBo I believe this is something that no other organisation is capable of doing as a partner, and I hope it is a simple way in which we, as a trade association, can help ensure breakthroughs are delivered to patients as speedily, efficiently and safely as possible. It’s timely to focus on cystic fibrosis (CF) in 2013 because in January a breakthrough biomedical treatment became available for the treatment of a specific mutation of CF. Kalydeco has been developed by longstanding BIA member Vertex. The drug was trialled in part in the UK, approved by European regulators at the end of July 2012, and English NHS commissioners decided to make it available to NHS patients here from the beginning of this year. This is what makes all the hard work of our members worthwhile: delivering transformational drugs to patients with unmet medical need. I think we can all learn something from this story:
  • Genomics is delivering real patient outcomes : Kalydeco is the first drug to address the underlying cause of cystic fibrosis for patients with a specific genetic mutation.
  • Industry working with patient groups is key to success: Kalydeco would probably not exist were it not for the US Cystic Fibrosis Foundation, which funded its early development. That research in turn built on the discovery of the CF gene in 1989, work partially funded by the Cystic Fibrosis Trust in the UK.
  • The UK remains a vital location for high quality research, hosting trial sites for Kalydeco.
  • England’s (the UK’s) new NHS structures have set a precedent and proved they can make timely reimbursement decisions on important breakthrough therapies outwith a NICE review
I am proud of the partnership the BIA and the Cystic Fibrosis Trust have established and hope both our organisations can grow and learn from our work together this year.