Kidney Health - Q2 2021

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A Mediaplanet campaign focused on

Kidney Health

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“Kidney disease disproportionately impacts patients from ethnic minorities.” Dr Graham Lipkin and Dr Sharlene Greenwood Presidents, UK Kidney Association

Q2 2021 | A promotional supplement distributed on behalf of Mediaplanet, which takes sole responsibility for its content

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“Kidney patients believe the pandemic has disrupted their kidney care.”

Dr Jan Gough Director of Patient Support Services, Kidney Care UK

Read more at www.healthawareness.co.uk


IN THIS ISSUE

Kidney cancer: We need to talk about how we’re feeling Rachel Giles, M.D., Ph.D. Chair, International Kidney Cancer Coalition

Pandemic worsens inequalities in kidney care

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The severe impact of COVID-19 on the kidney community and the results of growing health inequalities have highlighted the need for decisive action to improve care.

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Supporting kidney patients through the pandemic Dr Jan Gough Director of Patient Support Services, Kidney Care UK

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“It is imperative to detect Kidney Disease early.”

WRITTEN BY Dr Sharlene Greenwood President, UK Kidney Association

WRITTEN BY Dr Graham Lipkin President, UK Kidney Association

Professor Robyn Langham, ISN Co-Chair World Kidney Day, Nephrologist, Professor of Medicine, University of Melbourne, Parkville, VIC, Australia Professor Kam Kalantar, IFKF Co-Chair World Kidney Day, Nephrologist, Professor of Medicine, University of California, Irvine, CA, USA

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@HealthawarenessUK

@MediaplanetUK

e have witnessed the impact of COVID-19 first-hand and how the pandemic disproportionately affected marginalised populations, aggravating existing inequalities for patients with kidney disease. Rallying together as a community, we have been provided with a strong voice, innovation, expert support and steps for improvement at a time of crisis. Health inequalities Kidney disease disproportionately impacts patients from ethnic minorities and those with socioeconomic deprivation. The incidence of chronic kidney disease is three to five times higher in those of South Asian or African-Caribbean origin. This has led to a greater number of these patients reaching advanced kidney failure. The reasons include a higher incidence of high blood pressure and diabetes in these groups, a genetic predisposition in some and a higher rate of inflammatory diseases. Tragically, it is these same patients who suffered most from COVID-19. Patients with kidney disease, particularly those treated by dialysis or transplantation, have suffered a high incidence of COVID-19 infection. In fact, most patients receiving dialysis attend hospital or dialysis units three times each

week and were unable to shield. This dialysis population suffered the highest mortality of all the clinically extremely vulnerable groups within the UK. Kidney transplantation had to be suspended in many parts of the UK. This served to intensify existing inequalities in access to treatment and care. Getting It Right First Time Whilst there is much work to be done to address these inequalities, awareness in these communities and the need to check for blood pressure, diabetes and those with a family history of kidney disease have improved. Improvements involve screening, lifestyle advice, effective blood pressure treatment, monitoring of kidney function with blood tests and ensuring access to novel drug therapies. Quality improvement initiatives of NHS England, ‘Getting it Right First Time’ and the Renal Service Transformation programmes, include strategies to address prevention and measures to deal with inequities in access to the best treatments.

The Renal Association and British Renal Society have collaborated closely over the past year to produce extensive expert guidance and support for prevention and management of COVID-19 in patients with kidney disease. The success of this collaboration has heralded the creation of a new joint professional structure of doctors, allied health professionals and scientists, the UK Kidney Association. Closer working as a single, national organisation will achieve a ‘stronger together’ outcome.

Renal.org

britishrenal.org

Contact information: uk.info@mediaplanet.com or +44 (0) 203 642 0737

@ukkidney

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Researchers are hopeful on potential new kidney treatments Thanks to ongoing research and clinical trials, promising new therapies are being evaluated for a kidney condition that affects young adults.

A INTERVIEW WITH Professor Jonathan Barratt The Mayer Professor of Renal Medicine, University of Leicester WRITTEN BY Mark Nicholls

debilitating kidney condition with no approved treatment is striking young adults. IgA nephropathy (IgAN) is a progressive autoimmune disease which affects kidney function and results in up to half of patients developing ESRD (end-stage renal disease) and requiring haemodialysis or transplantation. Tragically, there remains a risk that the condition may recur in a transplanted kidney. However, scientists and clinicians are hopeful since potential new treatments are being evaluated with several clinical trials currently under way.

New therapeutics Currently, nephrologists work to control patient’s blood pressure, manage protein in the urine and slow the rate of kidney function deterioration. There is growing evidence that in IgAN the disease starts in the small intestine where structures called Peyer patches produce IgA1 antibodies and one new approach is to target the gut to reduce the amount of pathogenic IgA that is produced. “This is an incredibly exciting time with potential treatments on the way,” Prof Barratt adds, pointing out that the UK is at the forefront of IgA Nephropathy research, with IgAN patients being offered the chance to participate.

Kidney failure risk Consultant nephrologist Professor Jonathan Barratt explained that IgA nephropathy develops when the filters – or glomeruli – within the kidney that clean the blood become inflamed as a result of the protein IgA being deposited in them. This inflammation can cause further damage, ultimately leading to kidney failure. Professor Barratt, who is a Professor of Renal Medicine at the University of Leicester and sees IgAN patients at Leicester General Hospital, says: “This disease affects young adults at a critical time in their life. We do not know what causes it and we have no treatment, but the likelihood of these patients to be on dialysis in their 40s is high, which makes the diagnosis really devastating.”

Raise IgAN awareness As the disease is relatively rare, the level of knowledge among health professionals is limited and patients find it hard to obtain relevant information. “Most patients don’t even feel unwell with it,” Professor Barratt continues, “and often, it is only by chance that they come to our attention, when someone checks blood pressure, or identifies they have blood and protein in the urine.” In the meantime, he stresses the need to raise awareness of the disease among the affected population and medical professionals. This article is sponsored by Calliditas Therapeutics AB, a clinical-stage biopharmaceutical company focused on developing novel treatments, particularly in renal and hepatic diseases.

Paid for by Calliditas

Read more at calliditas.se/en/

Fortunately, charities within the kidney care sector have shown extraordinary efforts to help to ensure full support is offered to everyone who needs it throughout the pandemic. -Dr Jan Gough, Director of Patient Support Services, Kidney Care UK

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Kidney cancer: We need to talk about how we’re feeling The International Kidney Cancer Coalition’s (IKCC) 2018 global patient survey found that 96% of kidney cancer respondents experienced psychosocial issues including anxiety and fear. Approximately half of people don’t talk about their issues with family, friends or their health team.

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kidney cancer diagnosis can have a profound effect on the lives of patients, leaving them feeling overwhelmed, lonely or even depressed. “This past year, cancer patients have faced many additional issues that have had a psychological impact on them,” says Dr Rachel Giles, Chair of IKCC. “This includes ongoing uncertainties in their treatment regimens, delayed surgeries and the general stress of living with the everyday challenges of the pandemic.” World Kidney Cancer Day on 17th June will raise awareness for and address these issues. The theme of this year’s campaign is, ‘We need to talk about how we’re feeling.’ Kidney patients around the world will be asked to their own complete Personalised Psychological Wellbeing Report. This report is aimed to help people get a better understanding of their own situation and start conversations with others, including healthcare professionals about how they’re feeling. The psychosocial impact of kidney cancer Around the world, kidney cancer treatment tends to focus exclusively on physical health. But increasingly, we’re learning just how important mental health is both for effective and timely recovery and quality of life during and after treatment. Given the increased isolation so many kidney cancer patients have experienced during lockdowns, their loss of social support, compromised access to health services, increased financial stress and feeling extra vulnerable about their health, the past year and a half has been one of the hardest times imaginable to be living with cancer. This World Kidney Cancer Day initiative couldn’t have come at a better time.

To learn more and join the campaign, visit worldkidneycancerday.org. Together we can help reduce the global burden of kidney cancer.

WRITTEN BY

Rachel Giles, M.D., Ph.D. Chair, International Kidney Cancer Coalition

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Supporting kidney patients through the pandemic Whilst most of the general population saw freedoms last summer, many kidney patients were unable to come out of their isolation and we know this has had a huge impact on physical and mental wellbeing.

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any people with kidney disease would not like to think of themselves as being extremely vulnerable; but as part of the group considered clinically extremely vulnerable to COVID-19, thousands of kidney patients have been shielding for more than a year. Impact of the pandemic Over the last year, thousands of people living with kidney disease have stated that the pandemic had disrupted their kidney care (56%) and almost four in 10 felt that their overall health had declined (38%). Understandably, emotional wellbeing ranked highly on patients’ lists of worries with nearly seven in 10 (68%) wanting continued mental health support to help them cope. While many in the general population were looking forward to shops, pubs and leisure facilities being open and being able to socialise in larger groups, just 11% of kidney patients were looking forward to having the same freedoms as everyone else. Adjusting to a new normal Fortunately, charities within the kidney care sector have shown extraordinary efforts to help to ensure full support is offered to everyone who needs it throughout the pandemic. We know that our services will become even more important as we move towards a ‘new normal’. Although the world is starting to open up again for many, huge numbers of people living with kidney disease still face challenges. Through our services, support has been provided to 4,293 kidney patients

Over the last year, thousands of people living with kidney disease have stated that the pandemic had disrupted their kidney care (56%) and almost four in 10 felt that their overall health had declined (38%). and their families through direct patient support services in 2020. More of us will need help to readjust following an extensive period of shielding and social distancing; as a charity we will adapt our support to meet people’s changing needs, but always retain at the heart of all our decisions what is most important to people who use the services we offer.

WRITTEN BY Dr Jan Gough Director of Patient Support Services, Kidney Care UK

We believe that no one should face kidney disease alone and offering accessible and trustworthy patient support underpins everything we do here at Kidney Care UK. If you need help adjusting to the new normal, please email us at info@kidneycareuk.org or call us on 01420 541424 or visit our website at www.kidneycareuk.org

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Tackling the burden of chronic kidney disease People living with underlying health conditions and those from minority ethnic groups face an increased risk from chronic kidney disease.

C INTERVIEW WITH Dr Alexander Gueret-Wardle Medical Affairs Manager, AstraZeneca UK

INTERVIEW WITH Dr Kate Bramham London-based Nephrologist WRITTEN BY Mark Nicholls

hronic kidney disease (CKD) is a long-term condition where the kidneys do not work effectively. It can pose a silent risk to people with underlying cardiovascular conditions, from ethnic minorities and lower socioeconomic backgrounds.1,2,3 Yet there are hopes that education, awareness, and a more proactive role among health professionals, can help drive earlier diagnosis, address inequalities and reduce the need for kidney dialysis or transplantation. Health inequalities London-based kidney specialist Dr Kate Bramham remains concerned about the level of health inequalities around CKD and that certain groups are “being left behind” in the fight against the condition. “I am concerned about ethnic minority groups, particularly people of Black ethnicity. They tend to present later with kidney problems, are younger and have more complications.” Current services, she adds, are not good enough yet to deliver early diagnosis and prevention strategies, and risk factors such as diabetes, hypertension, smoking and obesity are not being acted upon soon enough for lower socio-economic groups, and ethnic minorities, who are up to five times more likely to develop CKD than other groups.2

EDITED BY AstraZeneca

I am concerned about ethnic minority groups, particularly people of Black ethnicity. They tend to present later with kidney problems, are younger and have more complications. Silent disease CKD can be a ‘silent disease’, with people not having symptoms until kidney disease is more advanced.4 But Dr Bramham believes screening those with high blood pressure, diabetes, and a family history of kidney disease, is crucial via testing urine for protein, which is a recognised marker of kidney damage, to slow risk of progression to kidney failure.5 Technology can play a role too. One project she pointed to uses smartphone technology to analyse home urine dip tests and transmit the results directly to GPs. Dr Bramham says this is an “exciting time” in terms of new opportunities to delay progression of CKD, but she adds: “It is absolutely critical that we think carefully about delivery of care, to ensure that those with more risk factors, in harder-to-reach groups are not left behind.”

June 2021. GB-29114

Cardiovascular link Dr Alex Gueret-Wardle, who is AstraZeneca UK’s CKD Lead, says the strong cardiovascular link to CKD is a fundamental, yet under-recognised

concern. In the UK, an estimated 3 million people have CKD, but as many as 1 million people may be undiagnosed.1,6 “While not everyone progresses with CKD to a point where they need supportive therapies, like dialysis,” he says, “CKD is strongly associated with an acceleration of cardiovascular disease which is responsible for significant morbidity and mortality in people living with CKD.” He stresses the importance of greater awareness, but believes primary care physicians can be more active in urine test screening for at-risk groups.

Paid for by AstraZeneca

CKD is strongly associated with an acceleration of cardiovascular disease which is responsible for significant morbidity and mortality in people living with CKD. Raising awareness Dr Gueret-Wardle pointed to data showing the sizable burden of CKD with over 100,000 unplanned hospital admissions in England and Wales7 and an estimated 45,000 premature deaths a year.6 While progress is being made to improve outcomes for CKD, its prevalence in the UK is growing.8 Generating greater awareness of the risk factors for CKD, may contribute to reducing inequalities around the disease and ensuring early diagnosis and intervention, so people with CKD can live well for longer. AstraZeneca is working on a broad initiative to reduce premature deaths and the number of people reaching advanced kidney disease. These projects centre on raising awareness, increasing home urine testing to support early diagnosis and supporting therapy optimisation in primary care to ensure people with CKD have the opportunity to achieve better outcomes.

References 1. Kidney Research UK. Kidney Health Inequalities In the UK: An agenda for change 2018. Available at: https:// kidneyresearchuk.org/wp-content/uploads/2019/09/ Health_Inequalities_lay_report_FINAL_WEB_20190311.pdf 2. Kidney Research UK. Kidney disease in people from minority ethnic groups. Available at: https:// kidneyresearchuk.org/kidney-health-information/aboutkidney-disease/am-i-at-risk/kidney-disease-in-minorityethnic-groups/ Last accessed June 2021. 3. Bello A, Peters J, Rigby J, et al. Socioeconomic Status and Chronic Kidney Disease at Presentation to a Renal Service in the United Kingdom. Clin J Am Soc Nephrol; 2008;3:1316-1323. 4. NHS Inform. Chronic kidney disease. Available at: https://www.nhsinform.scot/illnesses-and-conditions/ kidneys-bladder-and-prostate/chronic-kidneydisease#:~:text=About%20chronic%20kidney%20 disease,-Chronic%20kidney%20disease&text=CKD%20 does%20not%20usually%20cause,by%20blood%20and%20urine%20tests Last accessed June 2021.

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5. Shlipak MG, Tummalapalli SL, Boulware LE, et al. The case for early identification and intervention of chronic kidney disease: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. Kidney Int; 2021;99:34-47. 6. Kidney Research UK. Facts and Stats. Available at: https://www.kidneycareuk.org/news-and-campaigns/ facts-and-stats/ Last accessed June 2021 7. Healthcare Quality Improvement Partnership. National Chronic Kidney Disease Audit 2017: National Report (Part 2). Available at: https://www.hqip.org.uk/wp-content/ uploads/2018/02/national-chronic-kidney-disease-auditnational-report-part-2.pdf 8. Public Health England. Chronic kidney disease prevalence model 2014. Available at: https://assets. publishing.service.gov.uk/government/uploads/ system/uploads/attachment_data/file/612303/ ChronickidneydiseaseCKDprevalencemodelbriefing.pdf

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New approach boosts kidney patient care A new approach to dialysis access is a big step forward in the care of kidney patients.

T INTERVIEW WITH

Dr Aurangzaib Khawaja Specialty Doctor in Vascular Access & Renal Surgery, University Hospitals Birmingham SPREAD WRITTEN BY

Mark Nicholls

o enable patients to undergo kidney dialysis where machinery cleanses their blood three times a week – surgeons create a fistula, an ‘abnormal’ connection between two veins in the arm to facilitate the process. The fistula joint, which enables blood to flow through at higher-than-normal speed, has traditionally been conducted by a surgical procedure. But more recently, a minimally invasive technique known as Endo AVF (endovascular arteriovenous fistula) has shown a number of advantages that can be more comfortable for the patient, with fewer adverse reactions. Vascular access Dr Aurangzaib Khawaja, Specialty Doctor in Vascular Access & Renal Transplantation at the Queen Elizabeth Hospital, which is part of University Hospitals Birmingham, explains the system is for end stage kidney disease (ESKD) undergoing haemodialysis (blood dialysis). Haemodialysis requires vascular access to connect a patient’s blood circulation to the dialysis machine via an arteriovenous fistula (AVF). It is generally created under local or regional anaesthetic to facilitate the four-hour dialysis sessions that take place three times a week in a hospital setting. “For the last 60 years this has been done with an operation where a cut is made to find those blood vessels and stitch them together,” he says. “That has remained very much unchanged, but it has its challenges.” Up to 40% of patients may not respond well to the surgical procedure, and it could take up to three months for the joint to develop. No scarring But since 2016, the Birmingham unit has been using the Becton Dickinson WavelinQ™ EndoAVF system, which creates an endovascular AV fistula (Endo AVF) for haemodialysis access, a minimally invasive technique performed under radiological guidance. “It is a less invasive way of making the fistula and there is no scarring after the procedure,” he says. Other benefits of Endo AVF are that it can increase possible options for the fistula site from three to five, and

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avoids the risk of scar infection or disfigurement from the traditional fistula where lumps can appear early across the arm. It can also reduce the number of hospital visits for fistula maintenance. “By making these percutaneous or radiologically-guided fistulas we create a softer but equally effective fistula, which distributes the stress on the vein,” he says. Team effort Patients referred for fistula are anatomically assessed for the next stage of their kidney treatment care, which may be for Endo AVF and while some patients may request it, Dr Khawaja emphasises that the process is a team effort involving the nephrologist, radiologist, surgeon and dialysis nurse. “But whatever we do, it has to have a focus on patient and their dialysis nurse because they have to have a working fistula that can easily have a needle put in,” he says. The fistula procedure takes about 40 minutes and is not dependent on access to an operating theatre. Indeed, in the United States and Europe it is being performed outside of hospital settings, which is proving of value during the COVID-19 pandemic. Big step forward The crux of the procedure is in making a communication between two blood vessels. Endo AVF is a dual catheter system with two magnetic arrays. Dye tests map the vessels and then the cross wire is advanced through the needles to the selected fistula site, with the magnets precisely aligning the two adjacent vessels. A radio frequency pulse is discharged to create a connection between the artery and vein. Dr Khawaja describes the technology as the biggest advance in this area for six decades. “Even now with surgical fistula creation, three or four out of 10 patients will need more operations or interventions, so a technology that can potentially reduce that by 20-30% is a big step forward,” he continues. “Patients on dialysis are already fatigued with the three-times-a-week visits. We have to do whatever we can to minimise this and give them a fistula that is less disfiguring and works well.”

Find out more at wavelinq.bd.com

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Ground-breaking fistula procedure helps mum get life back Mother-of-three, Tracy Cockayne, shares her experience of how a ground-breaking fistula procedure gave her a new lease of life after suffering kidney failure after childbirth.

A INTERVIEW WITH

Tracy Cockayne Patient

fter giving birth prematurely to her youngest son, Tracy Cockayne suffered a postpartum haemorrhage and multiple organ failure. Finding herself in the Intensive Care Unit at the Queen Elizabeth Hospital in Birmingham with no kidney function, she was placed on dialysis. It was initially conducted with a line in her neck and later her chest before she was advised to have a traditional arm fistula to facilitate dialysis three times a week. For Tracy this was a major issue and, because of fears over scarring and disfigurement, she opted against the procedure. Understanding your options Tracy, who was being treated at the Queen Elizabeth Hospital in Birmingham, knew a chest line was not a long-term option. However, she still declined an arm fistula. “Being a female, there is a certain level of vanity,” she explains. “Fistulas are bulbous, they are ugly and I didn’t want people to stare at them.” Even when her dialysis nurse Karen visited her on the dialysis unit and discussed the options and consequences, Tracy resisted even though she knew it was putting her life at risk. But there was a new twist when Karen asked if Tracy may be interested in participating in a trial for the WavelinQ™ EndoAVF system. “When she told me there would not be a scar on my arm, I agreed because this was an offer that alleviated all those fears,” she says.

Minimally invasive procedure Having been assessed as a good candidate for the procedure, it was carried out in December 2018 and went well. “I was conscious throughout it, I have zero scarring and I had a workable fistula,” says Tracy, who lives in the Sandwell area of the West Midlands. Endo AVF (endovascular AV fistula) is a minimally invasive technique. Whereas a traditional fistula involves

I only had two days off work. It has not impaired me in any way to go about normal life, it is not unsightly, and to be fair it saved my mental health. an incision and stitching to connect two veins, Endo AF is a dual catheter system and works with a wire advanced through needles to the selected fistula site. Magnets precisely align the adjacent vessels and a radio frequency pulse discharge creates a connection between the artery and vein. Improving patient comfort The procedure has shown a number of advantages over traditional fistulas in that it is more comfortable for the patient, with fewer adverse reactions and no scarring. Tracy says: “I only had two days off

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work. It has not impaired me in any way to go about normal life, it is not unsightly, and to be fair it saved my mental health.” “People do not believe I have a fistula because they cannot see the scar, but the fistula buzzes and they know I have one. For me it saved my life because I did not see a future with a standard fistula and I did not have a plan B,” she says. Pivotal moment Tracy also emphasises the importance of speaking to her counsellor and kidney therapist, who helped her make clear decisions and supported her from a mental health perspective. “It is really difficult when you are in that position,” she continues, “but my fistula has given me a future, it is so intrinsically linked with mental health. I feel the buzz in my arm that tells me as soon as I need dialysis that I have an access that is workable, is strong, and will save my life. It is like having an insurance policy in your arm.” Tracy now feels that dialysis fits in with her life, rather than dictates it. “I can go on holiday, swim, and I can still wear short-sleeved shirts,” she says. “It is liberating, I am not inhibited by my kidney failure and my fistula is a big part of that. The conversation with Karen over Endo AVF was a pivotal moment in my journey, that was the point where I was more willing to engage with the process and felt I had a choice.” She would like to see the procedure become more widely available for dialysis patients.

Spread paid for by BD

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Rallying together as a community, we have been provided with a strong voice, innovation, expert support and steps for improvement at a time of crisis. -Dr Graham Lipkin and Dr Sharlene Greenwood, Presidents, UK Kidney Association

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READ MORE AT HEALTHAWARENESS.CO.UK

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