Peter Storey, Director of Communications at Kidney Research UK, kindly took the time to speak to the EMJ about a number of pertinent areas of kidney disease. The charity is heavily involved in the UK’s contribution to World Kidney Day, and we firstly discussed the initiatives taken and information disseminated during this year’s event for patients and healthcare professionals alike, particularly in the context of the 2018 theme: kidney disease and women’s health. We also spoke about important advances in the field led by Kidney Research UK in a plethora of conditions, as well as exciting new areas of research it is currently focussing on. Additionally, a variety of strategies to improve outcomes for kidney disease patients, including methods of early diagnosis and the controversial topic of presumed consent in organ donation, an issue that is currently of major prominence in the UK, were tackled. As can be seen from this interview, Kidney Research UK is at the forefront of the fight against kidney disease and is doing much to help create crucial new strategies and innovations that could one day lead to the development of a cure for the condition.
Q: Could you give a few examples of the kinds of campaigns that Kidney Charities Together (KCT) typically organise for World Kidney Day?
A: The collective UK contribution to World Kidney Day is led in part by the KCT group, comprising Kidney Care UK, Kidney Research UK, The National Kidney Federation, and The Polycystic Kidney Disease Charity. The overall aim is to raise the profile of the importance of kidney health and kidney disease through engaging patients and the wider renal community in general awareness activities. These include providing support materials to enable individuals, patient groups, and healthcare professionals across the UK to organise their own awareness events, whether these are in the local shopping centre, hospital foyer, or renal unit. We also work closely with health professional organisations to galvanise their members to get involved, raise the profile, and share key messages through social media, email, newsletter, web, and other channels.
Materials are available to download from the UK website www.worldkidneyday.co.uk, there is a specific Twitter account that we are encouraging people to follow @kidneydayUK using #worldkidneyday, and there is a Facebook page www.facebook.com/worldkidneydayuk. Using these social media channels, series of kidney facts are being released from 1st–8th March and we encourage people to share these far and wide.
Q: To what extent has Kidney Research UK found that World Kidney Day has grown in prominence and significance over the years? Has this been reflected in the time and resources the charities put into the awareness campaign?
A: The KCT group has overseen the UK campaign since 2015, prior to which it was led by the Kidney Alliance, which no longer exists. In that time, the number of activities around the UK and the volume of materials requests to help support awareness events have increased. By far the biggest growth has been through social media, with groups and individuals sharing details of what they are organising, but, more importantly, the interest in the kidney facts builds year on year. This year we have channelled more resources into an awareness raising campaign in the hope that we can get kidney disease and the work of Kidney Research UK into the public consciousness.
Q: This year’s focus is on kidney disease and women’s health; how will this be reflected in this year’s campaign?
A: Additional information and materials focussing on women’s kidney health (covering pregnancy, urinary tract infections, and lupus) have been developed with support from the UK Renal Association. A 1-day meeting on 8th March about kidney disease and pregnancy has also been organised by the Renal Association and is supported by Kidney Research UK, Kidney Care UK, and the Royal College of Physicians (RCP). The aims of this meeting are to provide education for women with kidney disease (and their families) contemplating pregnancy, and to provide an update for practitioners involved in their care.
Kidney Research UK is keeping a very simple and focussed approach, reaching out to a very broad audience. Following the global theme, we are celebrating all the women and girls who are fighting kidney disease in homes, hospitals, schools, workplaces, and universities everywhere. We have been sharing stories of ‘kidney heroines’ on social media, encouraging others to do the same and to make donations through our text-to-donate scheme. Our supporters are celebrating stoical patients; their renal nurses and consultants; those who have donated kidneys; women who volunteer or fundraise; and family and friends who have cared for patients. We are pushing this on social media using #mykidneyheroine and #worldkidneyday. More information is available on the website: https://www.kidneyresearchuk.org/heroines
Q: What are the issues in kidney disease that disproportionately affect women? How can these best be tackled?
Q: What practical measures can be taken to help improve the rate of early diagnosis of kidney disease?
A: There needs to be more emphasis on identifying people at risk of kidney disease, including those with the main risk factors such as diabetes, high blood pressure, being from a Black, Asian, and Minority Ethnic (BAME) background, and family history. There are some 2 million people diagnosed as being at Stage 3 chronic kidney disease (CKD) or higher, yet previous studies, including one from Kidney Research UK, indicate the true prevalence at around 3 million. The ‘missing million’ of undiagnosed patients are at a greater risk because their condition is not being monitored.
We know that around 60,000 people a year will die prematurely because of the effects of kidney disease, including an increased risk of strokes and heart attacks. And some people’s kidneys will fail, leading to a lifetime of renal replacement therapy (dialysis or, for those fortunate enough, transplant).
The key is to identify people at the greatest risk of both disease progression and acute kidney injury (AKI). By stratifying patients, we can reduce the numbers of those with poorer outcomes crash-landing into kidney failure, reduce healthcare costs, and save more lives. Kidney Research UK is running a study with GPs, pathology laboratories, and nephrology specialists that involves building graphs of patients’ kidney functions over time and alerting doctors to those most at risk. The study is detailed here: https://www.kidneyresearchuk.org/research/assist-ckd
What we don’t have are the biomarkers that will tell us who is at risk of the disease. That’s why we are managing the first unique biorepository that links samples and data from patients with CKD and nephrotic syndrome to create a powerful research resource for future discovery. This innovative and ambitious project is detailed here: https://www.kidneyresearchuk.org/research/case-studies/nurture
Q: What research has Kidney Research UK been involved in that has had the most significant impact in the field?
A: We have a number of examples of work that have provided real benefit. Much of our work of course adds to the journey of discovery across both basic science and clinical research. However, there are some stand-out examples of progress:
Polycystic kidney disease: When new drugs come to market today it is likely their development has been many years in the making. Back in 1984, gene-sequencing research into polycystic kidney disease, funded by Kidney Research UK, was undertaken by Dr Stephen Reeders at the Oxford Renal Unit. This was the first of many milestones that have now led to the very first treatment for autosomal dominant polycystic kidney disease (ADPKD) being adopted: a significant breakthrough for ADPKD patients. Thanks to our investments decades earlier, patients with ADPKD and their families now have great hope for the future.
Chronic kidney disease: Kidney Research UK led a project in 2012 to implement a package of patient care techniques for the treatment of chronic kidney disease (CKD) in 20 GP practices. This was the first time in the UK that such an approach has been used in community healthcare. Through raising the profile of kidney disease, 800 new cases of CKD were diagnosed; this provided further evidence that more than one million people in the UK are living with undiagnosed CKD. We have now gone on to develop a programme for the early identification, support, and treatment of people with progressive CKD (ASSIST-CKD) which I have discussed above.
Anaemia: Kidney Research UK funded cutting-edge research at University College London that led to the establishment of a new treatment for anaemia in kidney patients. In 2006, Dr Surjit Srai showed that inflammation is the key factor in anaemia of chronic kidney failure. Now we are funding the biggest ever renal clinical trial to establish the best way to treat anaemia in dialysis patients (PIVOTAL).
Making kidney transplants work better: The first project to be funded through our Making Every Kidney Count appeal has delivered a world-first breakthrough in kidney transplantation. In 2012, Prof Mike Nicholson and his team in Leicester pioneered the revolutionary warm perfusion technique which pumps oxygenated blood through the donated kidney prior to transplantation. This repairs the damage caused by cold storage and gets the kidney working before transplant, avoiding any delay in function once inside the patient. It will also allow surgeons to use kidneys that may have otherwise been discarded. Patients are already benefiting from this technique and it could reduce the transplant waiting list by up to 20%.
Kidney cancer: Research funded by Kidney Research UK has discovered that a protein, known as TNF, has two functions: one is involved in cell death and the other is involved in cell regeneration. For kidney cancer, the protein can cause cell death and therefore has the potential to prevent further tumour growth. For acute renal failure, this powerful protein can promote cell regeneration and therefore has the potential to restore some kidney function by repairing renal cells. With this discovery, made by Dr John Bradley and his team in Cambridge, Kidney Research UK has laid the foundations for new life-saving treatments.
Kidney scarring (fibrosis): Many kidney patients may benefit from a Kidney Research UK-funded discovery that a type of cell called a macrophage can repair kidney scarring. Kidney scarring is the most common cause of kidney failure. Dr David Kluth from Edinburgh proved this hypothesis in 2004 and Kidney Research UK has consistently funded progress in this exciting area.
Rare genetic kidney diseases: Research funded by Kidney Research UK at Newcastle University has been central to finding a highly effective treatment for a rare type of kidney disease called atypical haemolytic uraemic syndrome (aHUS). aHUS is a life-threatening disease affecting around 200 people in England, with 20–30 new patients diagnosed with the condition each year. The disease destroys the kidneys and prevents patients from having a transplant.
Our funding enabled scientists to isolate and work out how to block the biological process causing the kidney damage. Eculizumab, the drug that stops aHUS, has now been recommended by the National Institute for Health and Care Excellence (NICE). Eculizumab has been proven to prevent kidney failure in patients with recent-onset aHUS and also enables those with failed kidneys to have a transplant.
It is also worth mentioning that our support for research careers adds to the capacity for renal research in the future. Not only do we work to bring more young researchers into the field, through our intercalated degrees for example, but we also fund the proof of concept for many new ideas that would not attract support elsewhere. These often result in researchers leveraging much bigger grants and takes their work a step closer to patient benefit.
Q: What areas of research are Kidney Research UK currently focussing on? What do you hope will be the outcomes from this?
A: We support a wide range of studies, clinical and basic science, as well as quality improvement in healthcare, allowing the best science to lead, rather than directing, all our funding. This ensures that we don’t miss the potential next breakthrough and exciting avenue of research. Alongside this, we do focus on particular areas. We are supporting several programme grants looking at making a step change in ensuring transplanted kidneys work better and last longer. We are particularly interested in why certain groups in society face a greater risk of kidney disease progression and suffer poorer outcomes (known as health inequalities). We have recently commissioned a major study to identify the key evidence gaps in this area. We also support the development of regenerative medicine, the cutting-edge of renal research. We have produced an infographic that summarises the aspirations from this area of research: https://www.kidneyresearchuk.org/file/research/Regenerative_Medicine_Infographic_Flyer_FINAL__20171025.pdf
Q: What are the most common problems kidney disease patients contact you about? What can be done to improve outcomes and spread awareness in regard to these particular issues?
A: In the last 2 months, the majority of calls to us have been from people wanting information about transplants, either as a live donor or as a patient waiting for a transplant. Currently about 80% of the UK transplant waiting list is made up of people waiting for a kidney.
Q: What is the most pressing issue in kidney disease currently, and how can this best be tackled?
A: We asked our patient supporters this question and 2,000 of them responded. The top research areas patients wanted answered were:
You can see the summary infographic in full here: https://www.kidneyresearchuk.org/file/patient-survey-2016-results.pdf
You can see how some of the areas listed above correlate with patients’ priorities.
Other challenges we face include why some people are at a greater risk of AKI. One in five hospital emergency admissions are associated with AKI and we need a way to identify who is at risk, as mentioned above, so that long-term damage and mortality can be reduced.
Fundamentally, we still don’t know where the ‘tipping point’ is in CKD: the point beyond which the damage to the kidneys is irreversible. If we could develop the biomarkers around this, and devise interventions, we could make a big impact on those at risk.
A common factor in many kidney diseases is the fibrosis (scarring) that occurs. The scarring is a symptom of persistent damage to the kidney’s structure. If we could control or reverse the scarring routinely, the prospects for patients would be greatly enhanced. Improving lifestyle factors will also make a big difference to risk. For example, the number of patients with Type 2 diabetes has increased significantly over the last 20 years: a major risk factor for kidney disease.
Q: Has Kidney Research UK noticed any particular trends in regard to demographics and prevalence of kidney disease in recent years. If so, what are the main reasons for this?
A: The main issue is that it is increasing; the prevalence of kidney failure has been consistently increasing at around 4% every year and people from BAME communities are at a much greater risk. We know that kidney failure is up to five-times more common in people from BAME communities and a South Asian person with diabetes has a 10-times greater risk of kidney failure.
Q: What practical measures do you believe the UK government could take in the next 12 months to improve the rate of kidney donation?
A: Presumed Consent: Kidney Research UK believes that more needs to be done to improve organ donation rates across the UK and that a ‘soft’ system of presumed consent for organ donation would help combat the severe shortage of organ donors in this country. The Welsh Government’s decision to implement its own soft opt-out option represents an important case study, alongside the lessons learnt from other European countries who have adopted a similar approach.
Presumed consent is not the complete answer and should be seen as only one of a number of measures that should be introduced to boost organ donation rates. This additional set of measures to boost organ donation rates include:
Infrastructure and clinical practice: Making sure we use more donated organs for transplantation. Sometimes people die in circumstances where timely organ retrieval is very difficult. For controlled deaths, however, the NHSBT 2020 strategy addresses a number of areas where infrastructure and clinical practice need to improve to increase the number of transplantations. Sufficient attention and urgency are needed here to ensure any increase in potential donors is not wasted.
Family consent: Encouraging a cultural change around organ donation and transplantation requires a long-term plan which could help overcome the main barrier to organ donation: family consent.
Attitudes to organ donation: Stigma and religious obstacles to organ donation currently lead to very low numbers of donors and high rates of objection from families after death, especially among BAME communities, which are in turn at higher risk of illnesses such as kidney disease and thus are over-represented on the organ waiting list. Part of Kidney Research UK’s work to improve health equalities amongst BAME communities addresses these issues through our Peer Educator programme.
Q: What strategies are Kidney Research UK implementing to try and improve the rate of kidney donations in the BAME community, which are generally very low?
A: Kidney Research UK has deployed its Peer Educator projects over many years to address this issue. Our peer educators are volunteers drawn from the community who engage with people in a culturally-sensitive way. We have a substantial track record in engaging with BAME communities on kidney and general health issues, as well as encouraging discussion and enabling thousands of registrations onto the NHS Organ Donor Register (ODR) and blood and bone marrow registries. The model has been utilised, adapted, and refined over the course of 12+ years. We have modified our initiative to tackle health issues at the preventative management level and right through to dealing with end of life and organ donation issues.
We are currently working with the Scottish Government to deliver a BAME-focussed organ donation project, utilising our Peer Educator model. Previously we have delivered organ donation awareness projects among a variety of BAME communities across the UK. Examples include: i) kidney health and organ donation awareness among all South Asian communities in Glasgow and Edinburgh; ii) blood, bone marrow, and organ donation awareness among the Pakistani Muslim communities in Birmingham; iii) organ donation awareness among mixed BAME communities including African, Caribbean, Chinese, and a cross section of South Asian communities in North West and South London.
Kidney Research UK has trained over 160 Peer Educators during a 12-year period. This work was informed by evidence derived from a Kidney Research UK-funded study on the barriers to organ donation faced by these communities.
More info here: https://www.kidneyresearchuk.org/research/peer-educator-project
Q: How far away are we from finding a cure for kidney disease?
A: I’m afraid this is one question we can’t answer with any certainty. There may rest hope in regenerative medicine (helping kidneys to repair themselves) or a possible breakthrough in controlling fibrosis. There are many, many types of kidney disease and, therefore, many ‘cures’ are needed.
Research into kidney diseases has not had the level of investment seen for areas such as cancer, dementia, and the like. Considering that 60,000 people will die prematurely because of the condition, the human and financial impact of the comorbidities (e.g. heart attacks and strokes) that kidney disease brings, and the costs of at least £1.4 Billion to the NHS, much more investment is needed.
Fundamentally, there is still so much research required to understand the mechanisms and natural history of these kidney diseases. We are making big steps forward; however, this laboratory research takes time and a significant level of investment.