Our Financial Support for the CF Community

As the Cystic Fibrosis Trust’s grants panel gets ready to consider applications for the second round of health and wellbeing grants, Support Service Manager Becky Kilgariff discusses why the Trust offers grants, and the kinds of financial assistance available.

Sometimes we are asked: “Why does the Cystic Fibrosis Trust offer grants to people and families affected by CF?” The short answer is: “Because they are needed”. Now, in an era of austerity cuts and benefit reform, we know they are needed more than ever. Our Policy and Public Affairs teams continue to campaign for the rights of people affected by CF and their carers and families, but in the current climate, our grants programme is there to help ease the financial burden.

We offer a variety of different grants to meet the needs of the CF community.

Our emergency grants can help at short notice – they are usually paid within a week of the application being received. We offer funeral grants of £750 following the death of someone with CF, hopefully easing some of the worry for families at a very difficult time. We can provide a grant of £250 for those undergoing a transplant or transplant assessment, which can bring unexpected costs. This could perhaps be travel costs for getting to the transplant centre, or for a family member to stay nearby, and these can be applied for up to two months after the costs have been incurred.

We also offer small emergency grants of up to £150 for other unexpected costs or emergencies. This can include urgent household repairs or cleaning to remove damp or mould, or replacement hypoallergenic bedding. We can also fund the first prescription pre-payment certificate for people unable to meet this cost, although we continue to campaign for prescription charges to be abolished for people with cystic fibrosis. Thanks to a generous gift from the Edward W Joseph Trust, we’re also able to offer grants of £450 to promote increased care in the home, rather than hospital, particularly at end of life. Our advice to anyone who needs an emergency grant is to contact our Helpline on 0300 373 1000 or helpline@cysticfibrosis.org.uk.

  

Our programme of health and wellbeing grants of up to £350 for goods or services is designed to help improve the health and quality of life of people with cystic fibrosis. These grants are considered by a panel every two months, and the next panel meeting takes place on Tuesday 13 April. In the past, the panel has awarded grants for gym fees and exercise equipment, fridge freezers and washing machines.

Finally, we also fund holidays for people with cystic fibrosis aged over 25s. From this week onwards, these are administered by the Cystic Fibrosis Holiday Fund – you can apply online or get in touch with them for an application form.

I hope that one day we won’t need to offer grants for people with cystic fibrosis – beating CF for good would mean an end to the financial pressures CF can bring. Until then we will continue to provide financial support where it is most needed through our grants.

Taking on the Atlantic

Later today teams from the universities of Oxford and Cambridge will do battle in the annual Boat Race, televised around the world. But away from the cameras, two groups of friends have been training hard for an even bigger challenge – the Talisker Whisky Atlantic Challenge – to raise money for the Cystic Fibrosis Trust. At 3,000 nautical miles, it’s the equivalent of 821 boat races, non-stop. James Timbs-Harrison from the All Beans No Monkeys team offers an update on the team’s progress.

The All Beans No Monkeys team stepped up our training to a new level over the Easter weekend, rowing our boat from Christchurch over to Cowes on the Isle of Wight.
It was a real challenge at this stage in our training with tough weather conditions, some reasonable sized waves and lots of wind. We tested out a lot of the equipment we will use on the Atlantic row and got to understand how the continuous rowing and resting regime will work on our bodies.
The weekend tied in nicely to other rowing events across the UK including the head of the river race, which the team have taken part in whilst at university and the upcoming Oxford/Cambridge boat race.

The weekend row created a lot of interest from members of the public and we have already had donations made just from people seeing the boat. The team hopes to raise £60,000 for our chosen charity, the Cystic Fibrosis Trust.

Find out more about and sponsor All Beans No Monkeys.

What to know what the challenge is like in numbers? Check out our infographic below:

Singing and Cystic Fibrosis

As Bianca Nicholas gears up to hit the stage for Eurovision 2015, composer Gareth Williams discusses Breath Cycle, a community singing project he developed at Scottish Opera to explore the impact of singing on cystic fibrosis. For Breath Cycle Gareth collaborated with the respiratory ward at Gartnavel Hospital in Glasgow, and worked with a number of people with cystic fibrosis.

“The exercise of singing is delightfull to Nature, & good to preserve the health of Man….
It doth strengthen all parts of the brest, & doth open the pipes.”

These are two of many reasons given by the English Renaissance composer William Byrd (born c.1539) as to why we should all sing. The idea that singing is beneficial to our health and wellbeing has clearly been around for a while, and Breath Cycle was the beginning of our journey to finding out more.

The findings from the pilot project were very encouraging and so over the next few years our plan is to open the Breath Cycle project up across several CF centres and take as many participants through the process of learning to sing as we can.

Before Breath Cycle, I had spent years working with opera singers. They are the professional athletes of singing and breathing – their voices can fill huge auditoriums, carry across full orchestras, and even shatter glass (so the story goes).

I see so many parallels in the daily routines of the opera singers I know and the participants with CF that I worked with. They both have daily rituals, exercises, regimes and routines to keep their instrument/their lungs in good working order. Opera singers work hard so that they can perform, and people with CF so that they can continue to live their lives on their own terms.

When fragility turns up on the opera stage, it is not as we think of it – Violetta at the end of La Traviata, or Mimi at the close of La Boheme, are both characters with chronic lung conditions who nevertheless seem to have the lung capacity to stun a fully grown elephant with a well-aimed top C.

Through Breath Cycle, I came to the conclusion that singing doesn’t have to be fireworks and dazzling displays of pitch-perfect spiralling to be engaging, meaningful and powerful, because it is, at its core, the act of breathing beautifully. 

Listening to the right singer with the right song moves us more than anything else can, because underneath the melodies and the counter-melodies, the harmonies and the rhythms, is a reminder to us all of what we are and what sustains us. Breath.

Here’s a song from Breath Cycle that David Brock and I created for five people with cystic fibrosis. It was recorded and assembled in a recording studio in Glasgow and sung beautifully by Breath Cycle participants. Of all the performances of my music I’ve witnessed, this is the one I am most proud of:  https://youtu.be/vPrZ-aF7Clk.

I might argue that there is only one thing more wondrous than the act of singing, and that is the act of singing together, and this is my aspiration – that people with CF can meet online and sing with one another. There are songs to be written, the technology exists – we just need to find the singers!

In the words of the composer William Byrd: “Since Singing is so good a thing, I wish all men would learn to sing.”

For information, visit www.breathcycle.com.

Making Travel Easier

Our Public Affairs team at the Trust are looking at how people with cystic fibrosis are affected when travelling and in particularly when getting travel insurance to go abroad. Lynsey Beswick, Public Affairs Officer for England, talks more about our work and how CF affects people like her. 

It’s Easter holidays and a time when many people will taken the opportunity to dig out their passport and air those beach towels in preparation for a holiday break. Most people take for granted the ease with which they jump on a plane and fly to far away shores.

However, for many people with cystic fibrosis, myself included, this is not always the case. Finding travel insurance can be a daunting task: insurance cover can be hard to find, the questions are not always relevant and quotes can be ridiculously expensive. 

Then there are the additional costs to consider. Most airlines require a fit to fly test and will charge for oxygen during flights. With numerous medications, travelling light is not an option and extra baggage is required incurring additional charges. 

The Cystic Fibrosis Trust is on a mission to reduce these barriers and make it easier for people with cystic fibrosis and their families to travel. 

We believe it is wrong that it can take hours to find appropriate travel insurance and people with cystic fibrosis often have no choice but premiums that cost hundreds of pounds. As a result many people are forced to travel without insurance or even stay at home. 

The Trust aims to ensure that the industry must have a better understanding of the condition. We have been working with travel insurance companies to help develop a new model of risk specifically for cystic fibrosis, but we need your help to make sure we get it right. 

 If you have cystic fibrosis or are a parent of a child with CF, we are keen to hear from you. Please help us by sharing your experience of travel insurance through our short online survey. 

Over the coming months we will also be challenging the airlines and improving the information we provide to make it easier for you to travel. We firmly believe that everyone deserves a holiday, especially people with cystic fibrosis and their families.

If you would like to be further involved with our travel campaign, as well as completing our survey you can also contact me directly at lynsey.beswick@cysticfibrosis.org.uk.

Things I learned on a summer studentship

Kate Ryan, an undergraduate medical student at Keele University, took part in the Cystic Fibrosis Trust’s Summer Studentships programme in 2014, where she worked on a PhD project on cystic fibrosis-related diabetes. Following her placement in the academic holidays, Kate won first prize for her poster presentation at the UK CF Conference.

Initially I wanted to complete a studentship over the summer as I have been interested in research ever since my first year of medical school. I gained a lot from participating in a summer project funded by the Cystic Fibrosis Trust with regards to lab skills, working as part of a team and becoming more familiar with the process of research; from planning, right through to results and presentation.

This particular project allowed me to present at my first conference which was a great experience for someone considering a career in research and helped me recognise areas I did well in as well as those I could have improved on. I also got the opportunity to meet some of the top names in cystic fibrosis research and to attend workshops about exciting new treatment options. 

Although I have had some experience in medical school, working in a lab was a relatively new experience for me. I was taught about general lab safety as well as the relevant techniques needed for my project. This hands-on approach to research was the part I found most enjoyable.

This research project has led me to consider intercalating next year and possibly considering further research in my career. It has helped me realise the importance of research and how enjoyable it can be.

I would highly recommend this to any medical student, whether you are interested in a career in research or not.

Thanks to the Cystic Fibrosis Trust for such a great opportunity last summer!

Find out more about the studentships programme at cysticfibrosis.org.uk/studentships.

Understanding the VX-661 Phase 2b Results

Pharmaceutical company Vertex, today released the results of a recent Phase 2b trial, which looked at safety of a drug known as VX-661 in combination with ivacaftor (Kalydeco). There has been a lot of anticipation about these results because it is only the second time that the company has issued trial data. Below, Dr Anoushka de Almeida-Carragher, Senior Research Manager looks a what they tell us.

This study involved 39 people with cystic fibrosis who have two copies of the F508del mutation, and confirmed that the treatment is safe and well tolerated.  The stated improvement in lung function, from baseline, within four weeks of treatment is also encouraging. It should be noted that the number of people who took part in the study is extremely small. However the results provide solid support for the next stage of trials – Phase 3 – which Vertex commenced in the early part of this year.

This program of four Phase 3 clinical trials will look at lung function after the administration of the VX-661/ivacaftor combination, but this time involves not only people with two copies of the F508del mutation – who were studied in the phase 2b trial, and make up roughly 51% of the CF population – but also includes people who have one copy of the F508del mutation and a second mutation that is either a gating mutation, residual function mutation or a mutation that results in minimal CFTR function.

This will the first time that the efficacy of this drug regime is being tested in a large population of people with cystic fibrosis (approximately 1150, aged 12 and older). Furthermore, the fact that 4 different ‘mutation combinations’ are being investigated, thus impacting on a larger number of CF patients, means this next-stage trial is vital in enhancing our knowledge-base in striving to reach our goal of beating CF for good.

The Trust will be watching the Phase 3 trials with interest and ensure that our CF community remain updated on the progress in transformational treatments.

Working with Pharma. Ed Owen's US blog part 2

As well as meeting the Cystic Fibrosis Foundation in the US last week, the Trust’s Chief Executive, Ed Owen, and Director of Research & Care, Dr Janet Allen, also dropped in on two pharmaceutical companies of importance to cystic fibrosis, Novartis and Vertex. Here is Ed’s second blog explaining what they find out:

Much is said about the pharmaceutical industry. Some of it is fair, some less so. But the fact remains that only pharma companies have the size, expertise and capability to develop and produce the drugs that can make a difference to people with cystic fibrosis. So it is vital that we have strong relationships with key companies, like Vertex and Novartis, and work with them for the benefit of our community. 

The Vertex story is an extraordinary one, and one in which our sister charity, the Cystic Fibrosis Foundation (CFF), has played a central role. It also tells us much about the industry, its weaknesses and strengths, limitations and potential.

Long frustrated by the lack of industry interest in cystic fibrosis in the late 1990s and early 2000s, the CFF began funding a number of commercial programmes, including one led by a biotech company called Aurora Sciences, later bought by Vertex, to find compounds to develop drugs to tackle the genetic causes of cystic fibrosis.

A decade and a half on, and Vertex is a pharmaceutical trailblazer. Ivacaftor (Kalydeco), is transforming the lives of those with the G551D mutation and a combination therapy of ivacaftor and lumacaftor has been submitted for approval for use in people with two copies of the F508del mutation.

Being a trailblazer however comes at a price, and the high price of ivacaftor has been controversial – with many questions about the likely price of the combination therapy if it is granted approval from the regulators.

With a cash-strapped NHS, and a system of drug appraisal that in England, at least, is ill-suited to assess particular issues relevant to conditions like cystic fibrosis, there is a real risk that this combination therapy is given regulatory approval in Europe later this year for use in four out of 10 people with cystic fibrosis but will not reach those that need it here in the UK for a considerable amount of time, if at all.

Our focus must be to ensure that approved therapies get to those who need them as quickly as possible - and we are discussing these issues now with all key players.

But, when we met them last week, Vertex continued to be tight-lipped about future pricing in advance of regulatory approval. Along with other pharmaceutical companies, the company argues that the price of drugs reflects both the high cost of investment that has been made over many years to develop and trial therapies (estimates vary, but the average cost of producing a new drug is usually well above £1bn) and the relatively small numbers of patients with ‘rare diseases’ like cystic fibrosis.

Like every other pharmaceutical company, Vertex has shareholders who demand an appropriate financial return on their investment. The long-term prospects of the cystic fibrosis ‘market’ means that Vertex is continuing to invest in both their immediate pipeline of potential therapies and in longer-term research to develop what they describe as ‘second generation’ drugs that they believe could be even more effective in future years.

We are delighted they are doing so, and are keen to see other drugs companies invest in cystic fibrosis research too. One such company is Novartis. It already produces cystic fibrosis drugs, most commonly Tobramycin. But we have had concerns about its future commitment following its decision to move its wider respiratory research base from Sussex in the UK to Boston in the US in late 2013.

We were therefore pleased to meet the Novartis team in Boston last week and to receive their reassurance that their cystic fibrosis-related drug programmes were alive and well.

For the first time in decades, the pharmaceutical industry is investing heavily in cystic fibrosis. As President Obama said in January, the condition is at the cutting edge of new advances in ‘precision medicine’ with new therapies being developed focused on defined patient groups with particular genetic mutations.

That investment will only continue for as long as companies believe that health systems will pay for the drugs that follow. Therein lies the challenge for the NHS, ourselves and all those wishing to see innovative treatments that transform the lives of people with cystic fibrosis accelerated as quickly as possible.

High-cost drugs are the future. How they are paid for is the key question that we all need to address.