Daniel Gallego was diagnosed with focal segmental glomerulosclerosis (FSGS) in 1993. He underwent haemodialysis from 1995 until a kidney transplant in 1998. When the transplant failed in 2003, his haemodialysis resumed. Today, Daniel is the president of the European Kidney Patients Federation (EKPF), an umbrella organisation for a federation of 27 national kidney patient organisations. Here, he explains the EKPF’s priorities as it campaigns for better clinical and holistic care for people with chronic kidney disease, who face a substantial burden of disease

The EKPF approach to improving care for kidney patients is underpinned by three principles: voice, choice and co-production. “First, we would like to have a voice in whatever healthcare authorities and decision makers are doing. Second, we would like to see greater choice in the services offered to kidney patients. Third, we would like to co-produce resources as an equal around the table.”

As Daniel and his EKPF colleagues lobby politicians in Brussels, presenting them with clinical evidence about what works well for patients, they highlight the holistic burden of chronic kidney disease (CKD) for patients in the long term.

The burden of CKD is substantial—physically and mentally, and in terms of social and economic consequences. It is an unequal burden too, with “enormous disparities”, Daniel says, between and even within European countries: “I always say that we have the two codes that will affect your health. The first is your genetic code and the second is the postcode that shows where you live.”

For instance, in Germany there is currently a wait of several years for a kidney transplant, Daniel says, whereas in Spain the wait may only be two years or less. Accordingly, the EKPF is campaigning for all European kidney patients to have improved dialysis and transplantation.

Daniel knows from first-hand experience how much of a burden chronic kidney disease can be for kidney patients and their caregivers. There are many challenges and several unmet needs. 

Treatment burden

Daniel feels that kidney transplantation remains the best treatment option for patients with kidney failure,¹ but Daniel explains that patients may “remain on dialysis treatment forever, depending on a machine to survive. Three sessions of dialysis a week for five to six hours a day, including transfer, is really hard,” Daniel says.

The impact of such an invasive therapy has a profound effect on patients. Dialysis entails radical changes to lifestyle, for people who are older and in retirement and for people who are younger and in employment when they are diagnosed, as Daniel was himself. “There are many patients in their 40s and 50s, who would like to continue to work; employment is very important for them, socially and economically. They would like to have a chance to maintain their daily activities.

Part of the EKPF’s strategic plan is to promote haemodialysis at home more often. Daniel believes that physicians should be offering home dialysis when that is a good fit for the person’s life.

“Not everyone is a candidate to be treated at home, but we believe that kidney patients should be managed at home whenever possible… home and family are therapeutic elements themselves. 

“During COVID-19, people having dialysis at home were protected,” Daniel says. “Home delivery of medication and having a pharmacy in the community, not in the hospital, is one of the lessons that we have learned.”

If life expectancy increases, the number of people living with chronic disease may grow. For Daniel that means “we need to rethink and redesign healthcare so patients can avoid going to the hospital unnecessarily”.

Dietary restrictions

As well as the numerous pills that a CKD patient may need to take, a controlled diet is an important part of their care. “In our society we celebrate everything by eating and drinking around the table, but people with CKD have huge restrictions on sodium, potassium and phosphorous. Almost everything is forbidden. This is not only for food but for liquids too.

“People with healthy kidneys don’t understand that we can be thirsty 24/7. As if you are walking through a desert without water and you are going crazy. Imagine how hard this is during a heatwave.” In CKD, the failing kidneys pass more water to eliminate waste acquired in the diet, so patients are forced by thirst to drink more water.²

Caregivers and families have to adapt their diets too, in response to these restrictions.

The burden on caregivers

Daniel believes that the important role of formal and informal caregivers in terms of disease management needs to be acknowledged more. He explains that many kidney patients use a wheelchair or have disabilities, including deafness, blindness or diabetes.

Consequently, caregivers face “very tough situations, living 24/7 with the disease—just as the patients do. So, we need to involve them, to try to understand their needs and their burnout.

“We need to empower caregivers and prepare a specific programme for them—involving them in consultations from the beginning, to address all the needs of the patient.”

The psychological burden of CKD

When people are diagnosed with chronic kidney disease, Daniel says that it can take years to adapt to the situation. “A diagnosis splits your life into two and you don’t see your old life again.

“I was 20 when I first met FSGS. The doctor said that there was no treatment for me and I was angry. I thought how is it possible at the end of the 20th century that there is no cure, no treatment or something to reverse end-stage kidney disease?

“We patients hate that technical term (‘end-stage kidney disease’), but we have to accept that kidney failure leads to kidney replacement therapy: a kidney transplant, if you’re suitable and lucky, or dialysis treatment. 

“Depending on a machine to survive is not easy. It is really hard to accept that CKD is a long-term disease without cure and that you will remain on dialysis forever. It is not the end of life, but it is the beginning of a new one.

“It’s very complicated for people—remembering how you were without the disease and seeing how you are now with the unpleasant symptoms that you will feel forever.” 

“You pass through all the stages—the denial, anger, depression—until in the end, hopefully, you will find acceptance.”

The EKPF reassures people and helps them to deal with their anger and to understand that accepting the disease takes time. “While recognising how tough it is to live with chronic kidney disease, we stress the importance of being involved with the management of the disease to improve your health and well-being.”

“We need to accept kidney disease as something that has happened to us. It’s a very heavy thing to push away, but to embrace it means that it is no longer heavy.”

Daniel himself is in a much stronger position than when he was diagnosed. “I’m really proud to say that I’m only a kidney patient during treatments and during consultations. The rest of the time, I’m a person trying to have as fulfilling a life as possible.”

With such a substantial disease burden, people with CKD want to be listened to carefully and informed properly about life with the disease. Health care professionals and patient advocacy groups play a vital role in this, Daniel says.

“Patient centricity can be like a mantra that people repeat, but during the last year we have seen a change. In clinical trials, healthcare providers have been recommending patients approach kidney patient organisations and patient advocacy groups so they can be better-informed and understand the impact CKD has on the activities of daily life. This is what we would like to see as kidney patients.”

The EKPF works closely with all stakeholders—patients, carers, healthcare providers and pharmaceutical companies—to promote the interests of patients: “we are all on the same team fighting against kidney disease”. That team effort is best supported by co-production of materials, Daniel says. His view is that too much of the material about kidney disease in the public domain is pitched at too technical a level and does not consider the real-life burden of the disease on people.

A specific need is around educating patients about home therapies before any consultation during which replacement therapies are discussed, so they understand what is involved. “You need to be ready to communicate with the specialist and ask about everything you have doubts about.

“The core concept is giving patients responsibility in the management of their disease. I think we need to enable real shared decision-making and choose treatments together. Of course, the doctor has the knowledge, but the patient has the experience. We are professionals by experience because we are dealing with kidney disease 24/7.”

Daniel is passionate about the importance of the role of patient advocacy groups in supporting patients. They give a vital sense of community to patients. The groups create places where people can come together as equals and be understood. He hopes that this crucial role will be understood more as time goes on.

“I think we need to work with healthcare providers in the hospitals, so that when you have a diagnosis, you can find the patient organisation through another door, so you can find out more about the treatments and everything else that you will need. The HCPs don’t really have the time to inform people about everything, so if patients have doubts and questions, organisations can help.”

Daniel believes that it makes sense to prescribe patient organisations to patients: “Because then patients will feel understood and understand everything that they feel. To understand something is different to feeling something. If you are talking to someone who has felt the same things, you understand and you feel better.”

“When a doctor prescribes you some medication and some treatment, they have the understanding, but patients have the lived experience. I can share that I am taking 20 pills per day, or having treatment three or five times a week. And so, I can say, ‘If I can do it, you can do it.’”

Glomerular disease may be described as a rare disease,³ but when a patient receives that diagnosis, it does not feel that way: it’s real rather than rare. Daniel thinks that patient advocacy groups play a vital role in helping people with chronic kidney disease come to terms with their new reality and live their new lives. 

“The EKPF stands with the patient and says ‘you’re not alone’. It’s tough, but in the end it’s possible to have a fulfilling life even with a chronic disease.”

References

[1] KDIGO 2021 Clinical Practice Guideline for the Management of Glomerular Diseases. Available from https://kdigo.org/wp-content/uploads/2017/02/KDIGOGlomerular-Diseases-Guideline-2021-English.pdf. Accessed October 2022.

[2] Choi HY, Park HC, Ha SK. High Water Intake and Progression of Chronic Kidney Diseases. Electrolyte Blood Press. 2015 Dec;13(2):46-51. doi: 10.5049/EBP.2015.13.2.46.

[3] Floege J, Amann K. Primary glomerulonephritides. Lancet. 2016;387(10032):2036-2048. doi:10.1016/S0140-6736(16)00272-5.

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Date of preparation October 2022 – UK-NA-2200161

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