Chronic kidney disease is a global health problem because of its high death and illness rates. Worldwide, the prevalence of this longstanding disease varies across countries, but on average it is about 10 percent. This means one in every 10 people in the world has chronic kidney disease. The problem is, nine out of those 10 people are not aware that they have kidney problems.

Poor knowledge about kidney health means many people do not realize that their kidneys do not work properly and they seek medical help only after their ailment is already at an advanced stage. 

In Indonesia, the prevalence of chronic kidney disease continues to increase, now standing at 0.38 percent, up from 0.2 percent in 2013, according to the Basic Health Survey (Riskesdas). The high prevalence of kidney failure has put tremendous burdens not only on patients and their families but also on the government, because the treatment for patients of kidney failure costs a lot.

Imran Agus Nurali, director of health promotion and people empowerment at the Health Ministry, said Indonesia was facing a triple burden of disease: new emerging and reemerging infectious diseases such as COVID-19, unresolved infectious diseases (pneumonia and diarrhea) and the rapid rise in noncommunicable diseases (NCDs).

“While epidemics of infectious diseases are still occurring, we now must address the growing burden of NCDs,” he said during a webinar on March 9 to mark 2022 World Kidney Day.

The webinar, themed “Kidney Health for All: Bridge the Knowledge Gap for Better Kidney Care”, was held jointly by the Health Ministry, the Indonesian Medical Association (IDI), the Indonesian Society of Nephrology (Pernefri), the Health Care and Social Security Agency (BPJS Kesehatan) and the Indonesian Dialysis Patients Community (KPCDI).

Citing data from the National Team for the Acceleration of Poverty Reduction (TNP2K) and BPJS Kesehatan, Imran said the number of cases of catastrophic disease and the financial burden they caused had skyrocketed in 2014-2018. About 6.1 million cases of catastrophic illness, such as cancer, stroke, heart disease and kidney failure, were recorded in 2014, costing the state a total Rp 9.1 trillion (US$634.4 billion). In 2018, there were 19.2 million cases, with a total expenditure of Rp 20.4 trillion.

As of today, health costs covered by the government are mostly for curative care, especially kidney failure. In 2018, the government spent Rp 1.9 trillion on kidney failure treatment, which increased to Rp 2.7 trillion in 2019 and Rp 2.2 trillion in 2020, according to Health Ministry data.

To make matters worse, there is a common perception that NCDs befall mostly people aged 50 or older while the 2018 Riskesdas data reveal that many adults in the 20-49 years age group have had NCDs.

“This must become our common concern. With a lot of risk factors, such as unhealthy diet and sedentary lifestyles, NCD cases are projected to continue to rise and increase further our financial burden from catastrophic diseases,” said Imran.

Unfortunately, many people still believe in false information, which spreads via the internet. They, for example, insist they do not need to take any medication for their hypertension and diabetes because those drugs contain chemical substances that can damage their kidneys. This is misinformation because in fact it is uncontrolled hypertension and diabetes that will destroy their kidneys.

We should praise the government’s commitment to the strategy of “prevention is better than cure”. Nobody wants to suffer kidney failure. Under this curative principle, proper knowledge about risk factors for kidney disease, screening tests available in primary care facilities and accurate clinical diagnosis of kidney disease via simple measures – such as urine check-up and creatinine tests – need to be strengthened for successful early detection of chronic kidney disease.

With health literacy, people can manage their well-being through smart health choices. And, once something bad happens, they are ready with the information necessary to make proper decisions, including on kidney replacement therapy if they may need it.

According to Pernefri chairwoman Aida Lydia, today, there are three types of kidney replacement therapy – hemodialysis, continuous ambulatory peritoneal dialysis (CAPD) and kidney transplantation – available in Indonesia. Experts consider kidney transplantation the best treatment and most cost-effective. But it is not easy to get a kidney transplant here because of a severe shortage of donors.

Most patients with kidney failure undergo hemodialysis, according to Pernefri. In Indonesia, the number of patients receiving hemodialysis to replace kidney function has been sharply increasing, especially after BPJS Kesehatan started to cover hemodialysis costs in 2014.

According to Aida, only 1 percent of patients with chronic kidney disease benefit from CAPD – a kidney failure treatment that uses abdomen membranes to filter and remove waste products from the blood – while the rest are taking hemodialysis.

CAPD has several advantages compared with hemodialysis.

“Patients can do peritoneal dialysis treatment independently at home, at work or while traveling. They do not have to go to hospitals two or three times a week for the dialysis procedure. So patients will avoid the tremendous waste of time that results from their traveling to healthcare facilities,” said Aida, a kidney and hypertension consultant from the University of Indonesia’s School of Medicine.

Unlike hemodialysis, CAPD does not require access to veins. Studies suggest peritoneal dialysis is the best choice for patients with heart problems.

Unfortunately, peritoneal dialysis remains unpopular in Indonesia. Among obstacles hampering the optimization of CAPD are a shortage of skilled nurses who can train patients in the use of this home-based therapy and a lack of adequate facilities and financial incentives, Aida said.

The knowledge gap must be resolved because this will influence patients’ decision-making processes that can affect the outcomes of their medical treatment, said Aida.

With health literacy, patients with chronic kidney diseases and their families can better understand advice from doctors and other healthcare workers about, for example, the best modality choices for their kidney replacement therapy and the side-effects of drugs or medical interventions they receive.

Once a patient suffers from kidney failure, he or she must be able to adapt quickly to lifestyle changes, such as in their daily fluid intake, diet patterns and routine dialysis therapy, which are all quite drastic.

But patients will not be able to cope with drastic changes in lifestyle unless they have proper knowledge, which is key to protecting them from false information.

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The author is a staff writer at The Jakarta Post.