Friday 18 October 2013

Learning From Others At NACFC

The North American Cystic Fibrosis Conference is organised by the Cystic Fibrosis Foundation, who are the US counterpart to the Cystic Fibrosis Trust.  Like many other organisations we work with they have become an excellent and indispensable partner in the fight against cystic fibrosis. Ed Owen's latest blog from Salt Lake City gives an insight into the valuable work they have been doing and what we here in the UK can learn from them. 

"There have been tremendous improvements in cystic fibrosis in recent years. But now we need to close the deal."

So said Preston Campbell of the Cystic Fibrosis Foundation at the opening of the North American conference
here in Salt Lake City yesterday.

He was reflecting the great progress that has been made in recent years to increase life expectancy and the quality of life for people with cystic fibrosis - but also the single-minded determination that exists here among scientists, clinicians and others to end cystic fibrosis for good.

We at the Cystic Fibrosis Trust are equally ambitious and we all need to redouble our efforts to achieve this ambitious goal.

Like the Cystic Fibrosis Foundation here in the US, we are currently working on ambitious and inspiring plans that will bring us closer to this ultimate aim.

Bob Beall, the President of the Cystic Fibrosis Foundation, articulated in his speech yesterday what he believed were the three key challenges facing the cystic fibrosis community today:

- to develop transformational, disease-modifying treatments for all people with cystic fibrosis whatever their mutation;

- to ensure those with cystic fibrosis have access to these new therapies and to makes sure their wider value is properly recognised by healthcare systems; and

- to ensure all people with cystic fibrosis have the best quality of care available.

Bob has been with the Cystic Fibrosis Foundation for two decades and has provided inspirational leadership for the cystic fibrosis community here in the US and across the world.

The Cystic Fibrosis Foundation's seed-funding of small molecule work more than a decade ago has produced the tremendous breakthroughs we are witnessing today with Kalydeco and other potential therapies in the pipeline.

There is much we in the UK can learn from the Cystic Fibrosis Foundation’s experience - the need for clear focus and purpose, the value of targeted collaboration with industry and an impactful fundraising offer.

Earlier in the day I attended two sessions - the first focused on supporting the growing number of adults with cystic fibrosis, and the second on what works to improve adherence to treatment.

The morning session covered a wide range of issues including career development, parenthood and depression. The afternoon saw presentations on motivational therapy, the value of social networking and a novel supervision programme in the US called iCARE.

There are many fantastic things going on for people with cystic fibrosis on both sides of the Atlantic. Together we can both improve and transform the lives of all people with the condition.

1 comment:

  1. I think they have missed the boat if they are only now considering the "growing number of adults with CF". This is decades-old news. Adults have been in the majority for all of the 21st Century. What needs to be done now is look at how to support the growing number of people with CF who are retiring from work, and entering the realms of services for the elderly. What is being done to train geriatric medicine specialists in the care of people with CF? How are people with CF to cope with loss of their spouse and/or parents? How are people with CF going to be cared for properly should they develop dementia, with their complicated care regime? Why do the CF associations and health services only wait until there is a crisis before they act? Life expectancy of people with CF is rapidly converging with that of the general population, and thought needs to go in to how care is to be provided, afforded, and extended into old age. Now!