A short film by Kidney Research UK about the impact medical research has had on the lives of people with a rare kidney condition has been shortlisted in the 2020 Charity Film Awards. Shortlisted from 400 applicants the film, ‘Saving Lives – how genetics research changed the future for people with aHUS’, tells the story of Ros, a 27 year old farrier from North Devon who received life-saving treatment when her kidneys started to fail, and reveals how genetics research found a treatment which saved her.
Marc Stowell, Executive Director - Communications and Income Generation, at Kidney Research UK said: “Research changes lives and saves lives. This film celebrates the huge medical advances that research funded by Kidney Research UK has brought to people with aHUS. We are delighted to be shortlisted for this award and owe a huge thanks to Ros for sharing her story.”
A rare kidney condition, where fast treatment is vital
Ros Ford has a faulty gene which made her more likely to develop Atypical Haemolytic Uraemic Syndrome (aHUS), a very rare kidney condition. aHUS is a life-threatening disease – it destroys the kidneys and prevents patients from having a transplant.
Ros became unwell whilst training for her physically challenging job. At the hospital, because she carried an alert card, the doctors could arrange the right tests immediately and they also alerted renal specialist Dr Coralie Bingham. Dr Bingham knew about Ros’ condition and had treated her aunt, who’d died from the complications of aHUS at just 39 years old.
Life-saving treatment thanks to research
The film explains how research into the condition – funded by Kidney Research UK – was central to finding an effective treatment for aHUS. Professor Tim Goodship led the team at Newcastle University, who worked out how to block the biological process causing the kidney damage. Eculizumab, the drug which stops aHUS, has now been recommended by NICE and was used to treat Ros. Eculizumab has been proven to prevent kidney failure in patients with recent onset aHUS and enables those with failed kidneys to have a transplant.
Professor Goodship, now retired, says: “Finding a drug that was effective was fantastic, because it meant we could not only use it to treat people who had the disease for the first time and prevent them going onto dialysis; but for those already on dialysis it was possible to offer the hope they could get a transplant.”
Professor David Kavanagh, who now leads the team at Newcastle University, spoke about the impact of bringing research into treatment: “As a doctor, one of the most gratifying things was the fact that patients who had donated samples actually got to benefit in their own lifetime. This is a classic example of how you can turn bench research into bedside research. Within 15 years from the initial discovery, we were treating patients and stopping kidney failure.”
In the film Ros pays tribute to the work of the researchers, saying: “There were moments in hospital when I didn’t think I would come out alive; in the back of my mind I had my Aunty’s situation in my head as she didn’t make it. If the researchers hadn’t done the work they’d done I wouldn’t have the job and lifestyle I do now.”
Dr Bingham talked of the huge satisfaction in seeing new treatments benefit patients: “I saw members of this family die from this condition. Now I’m treating them with effective treatment and seeing them restored to be able to work and live a normal life. That has been one of the most satisfying parts of my professional career.”
Celebrating the best in charity film
Now in its fourth year, the Charity Film Awards celebrates powerful and creative storytelling in the charity sector, and its ambassadors include Mariella Frostrup, Quentin Willson and Levison Wood. 65,000 members of the public voted for their favourite films to create the shortlist of 125 entries for the 2020 Charity Film Awards. The charities will now have their films judged by an expert panel, with the winners revealed in the Spring at a London awards ceremony.
You can watch the film on the Kidney Research UK YouTube channel:https://www.youtube.com/watch?v=k3TeJdM1W6w