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World Kidney Day: Nephrologists, patients decry high cost of dialysis, transplants

Adeze Ojukwu

Nigerian governments have failed renal patients.  This is the verdict of most people living with kidney diseases, as well as medical experts.

A former aide of a governor in the South-South region died recently, allegedly, due to kidney failure.

According to media reports, he was unable to raise the millions of funds needed to get a transplant about.

This is sad. But that is the unfortunate reality confronting many persons diagnosed with Chronic Kidney Disease(CKD) in Nigeria.

Another World Kidney Day(WKD) is here. Will it be another charade by government officials to make empty promises and meaningless media shows?

            A patient undergoing dialysis.

Renal patients require financial assistance to reduce the horrific impact of this debilitating condition.

Federal Government and other tiers need to provide more improved and subsidized renal facilities, to alleviate the sufferings of these citizens.

CKD is unlike other Non Communicable Diseases (NCDs), such as hypertension and diabetes, because of several complications that arise in it management such as anaemia, uremia, proteinurea, water retention, as well as high mortality and morbidity rates.

Other related difficulties include job loss, frequent hospitalizations, persistent lab tests and emergencies.

The burden is so much, that most sufferers, caregivers and their families sometimes lose hope and may end up with depression.

This year’s WKD presents another opportunity for the authorities and agencies to review policies on renal health, in order to improve facilities and services available across the country.

This is what obtains in several African and developing countries including Ghana, Tanzania and India.

Dr. Theophilus Umeizudike, Consultant Nephrologist and Transplant Physician at Lagos State University Teaching Hospital(LASUTH), Ikeja, said this year’s theme ‘Living well with kidney disease,’ is quite germane and relevant.

He spoke about this and other issues related to renal care in Nigeria in an exclusive interview with this writer in Lagos.

‘This is meant to address the concerns of people who have one form of kidney disease like those on dialysis or living with a kidney transplant. Such people and their care givers or care partners need to be encouraged that they are not alone.’

‘Payment for dialysis and kidney transplant remains unaffordable for most Nigerians, hence the need for support from the Federal and State Governments to support people living with kidney. This will go a long way in reducing the huge cost borne by such individuals,’ Dr. Umeizudike lamented.

He stressed the need for ‘people to take responsibility for their health. Simple check like blood pressure measurement, blood glucose, urinalysis, blood cholesterol, ultrasound scan of abdomen, ECG. All these can help detect early form of kidney disease and prompt treatment can be initiated earlier.’

‘In the year 2000, Genovese et al described the finding of a gene which was responsible for disproportionate predisposition of African Americans to kidney diseases. The gene is apolipoprotein L1 (APOL1) gene. This gene is located on chromosome 22.’

‘It is found exclusively in Africans and was a mutant that occurred several decades ago. It was a mutation that prevented severe form of sleeping sickness (Trypanosomiasis) in Africans.’

‘Though this mutation helped prevent severe sleeping sickness, it now increases predisposition to many forms of kidney diseases. Kidney diseases linked to APOL 1 gene mutation include sickle cell nephropathy, HIV associated nephropathy, lupus nephropathy, focal segmental glomerulosclerosis and hypertensive kidney disease. There is no treatment for APOL1 gene mutation yet. Research is on going to unravel possible treatment.’

Dr. Umeizudike urged government to invest in research in order to improve health care delivery, across the country.

According to him, stem cell treatment for kidney disease is still at the level of research. ‘There is no evidence that it is of benefit in treatment of chronic kidney disease for now.’

WKD is a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF).

The annual commemoration is observed universally with numerous events including public screenings, seminars and media activities.

Its aim is to raise awareness of the importance of our kidneys.

‘We do it all to create awareness about preventive behaviors, awareness about risk factors, and awareness about how to live with a kidney disease. We do this because we want kidney health for all,’ the WKD Steering Committe, said in a statement.

‘This edition is focussed on ‘Living Well with Kidney Disease’ in order to both increase education and awareness about effective symptom management and patient empowerment, with the ultimate goal of encouraging life participation.’

‘Whilst effective measures to prevent kidney disease and its progression are important, patients with kidney disease – including those who depend on dialysis and transplantation – and their care-partners should also feel supported, especially during pandemics and other challenging periods, by the concerted efforts of kidney care communities.’

The committee also called for ‘the inclusion of life participation as a key focus in the care of patients with CKD and as a building block towards delivering the ultimate goal of living well with kidney disease.’

‘Patients with CKD and their family members or other care-partners should be empowered to achieve the health outcomes and life goals that are meaningful and important to them.’

‘This will require patients to understand their role, to have the necessary knowledge to be able to engage with clinicians in shared decision-making, as well as developing the skills and support for effective self-management.’

‘We advocate for strengthened partnership with patients in the development, implementation and evaluation of interventions for practice and policy settings, that enable patients to live well. This needs to be supported by consistent, accessible and meaningful communication.’

A walk to mark 2021 World Kidney Day

‘We also call for greater emphasis on a strengths-based approach which encompasses strategies to support patient resilience, harness social connections, build patient awareness and knowledge, facilitate access to support, and establish confidence and control in self-management.’

Furthermore ‘we call for more effective and more integrated and holistic symptom management for all patients with kidney disease beyond traditional kidney therapies including effective strategies to identify and manage symptoms that cause suffering.’

The list includes, ‘pain, sleep issues, anxiety, depression, stress, mobility, frailty, and others and ask for more education and management strategies to alleviate these symptoms so that patients and their care-partners can have a better health-related quality of life.’

‘We must move beyond the status quo and advance patient-centeredness in research, practice and policy. Patient empowerment, partnership and improved communications, combined with a paradigm shift towards a strengths-based approach to care, can inspire confidence and hope in patients that they can live well with CKD,’ it noted.

Indeed being diagnosed with kidney disease can be a huge challenge, both for the patient and those people around them.

‘Its diagnosis and management, particularly in advanced stages of kidney disease, impacts severely upon their lives by reducing their, and that of family and friends, ability to participate in everyday activities like work, travel and socialising. It also causes numerous problematic side effects, such as fatigue, pain, depression, cognitive impairment, gastrointestinal problems and sleep problems.’

According to the organization, the current status quo in kidney disease management and treatment aims to prolong longevity by preserving, restoring or substituting kidney function and delivering relief from kidney failure regardless of the efficacy for overall kidney disease management.

‘This disease-centric approach may be inadequate, as it does not satisfactorily reflect patients’ priorities and values.’

People living with kidney disease, it stressed, ‘tend to, above all, want to be able to live well, maintain their role and social functioning, whilst maintaining some semblance of normality and a sense of control over their health and wellbeing.’

Also ‘the status quo approach also removes patients’ agency as they lack meaningful involvement in the management and treatment of their disease.’

‘This in turn leads to patients frequently perceiving treatment as being imposed, punitive and out of their control,’ it added.

‘For patients to be more content, engaged and constructive with regard to their treatment, and thereby improving clinical outcomes, they need to feel that their symptoms are effectively managed and to be intrinsically motivated to become active participants in their treatment.’

‘Ensuing life participation is equally important for both patients and their care-partners, as opposed to feeling consumed and constrained by the current approach to treating kidney disease.’

Since the inception of the campaign, its mission has been to boost ‘awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.’

It also aims at addressing causative factors such as ‘ diabetes and high blood pressure,’ which are key risk factors for Chronic Kidney Disease (CKD).

Individuals are encouraged to undertake systematic screening of all patients with diabetes and hypertension for CKD and also adopt preventive behaviours.

The occasion also provides opportunities to educate medical professionals about their key roles in detecting and reducing the risk of CKD, particularly in high risk populations.
It also highlighted the important role of local and national health authorities in controlling the CKD epidemic.

‘Governments to take action and invest in further kidney screening and encourage transplantation as a best-outcome option for kidney failure, and the act of organ donation as a life-saving initiative.’

It is gratifying that the initiative ‘started in 2006 and has not stopped growing ever since. Every year, the campaign highlights a particular theme to promote optimal renal health and services across communities and countries.’

.Ojukwu a Fellow of Hubert H Humphrey Fellowship, a journalist and advocate for improved socio-economic and health services for all citizens, as well as the implementation of the Sustainable Development Goals(SDGS).
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