The burden of care and treatment for kidney patients are overwhelming on their family members, writes JANET OGUNDEPO
A few years ago, children of a sexagenarian, Augustine Odulaja, planned to repay their father’s labour of love. They arranged to buy him a car and build him a house but didn’t envisage spending money on him in a hospital.
As expected, frequent hospital checkups and monitoring of his blood and sugar levels were priority plans. But diabetes, which he had nursed for some years, damaged his kidneys.
For Odulaja’s son, Kolawole, the pain of seeing his father bedridden was a bitter pill he struggled to swallow. At times when he felt overwhelmed with the situation, Kolawole said he excused himself to a private place to cry.
But, Kolawole added, that they spent a lot of money and sold two cars to meet up with the thrice-a-week dialysis sessions and other medications and bills.
Running shifts to stay with him at one of the public hospitals in the South-West where Odulaja is currently a patient is part of the burden of care the family bears. But the burden appears too heavy for the family despite selling two family cars and that of another family member.
He added, “We have been trying our best but we didn’t know it was going to be as it is now. Since it started a few days ago, he had undergone more than 20 dialysis and we were told that the best option for him is a transplant. Everything is becoming tough. Before now, we were always quick to get whatever the doctors prescribed but it is hard now. We have sold three cars already, including mine. We need financial aid and we can’t bear losing him now as we have not done anything for him to reciprocate his love for us and the money he spent on us.’’
Kolawole noted that they were trying to raise money for a transplant and medications thereafter, saying the bill amounted to N18m. He stated, “But we have tried to raise the money among ourselves but it is not enough.’’
He further stated that the situation had taken a toll on his finances and health, adding that merely recalling his father’s condition would make “eating become a problem.
“He has been sick for a year now. At first, we didn’t know the nature of the sickness because he would be fine for a while and after some time, become ill again. During those times, he would visit the clinic for treatment and become fine again until later on when it led to his kidney failing.” Sadly, Odulaja is still undergoing treatment.
Burden of cost
The National Health Insurance Scheme noted that only 13.5 million Nigerians were covered in the scheme in a population of over 200 million based on United Nations data.
The NHIS also stated that dialysis for chronic kidney failure and organ transplantation was not covered for kidney patients under the scheme. Based on this, health experts including Ibijike Sanwo-Olu; wife of the Lagos State governor, have called on the NHIS to include organ transplants, more dialysis sessions and after-care of organ transplant patients in the scheme.
A Germany-based consumer and market data firm, Statista, notes that as of 2018, about 97 per cent lacked health coverage.
Dialysis is a life-saving therapy for patients with chronic kidney diseases. The machine performs the kidney’s work of cleansing the blood of toxins, waste and fluid by drawing out blood from the patient’s body, filtering it through an artificial kidney called a dialyzer and then returning the cleaned blood to the body.
It was also gathered that the ratio of dialysis machines to the number of patients in most government hospitals was six dialysis machines to between 500 and 1000 patients. This implied that patients on dialysis would be on a rota and those unable to meet up would have to be rescheduled for a later date.
Meanwhile, families of kidney patients who our correspondent spoke with stated that once they missed a session in a week, the next assigned session in the week was another opportunity for dialysis. The jeopardy is more for patients without standby funds and health insurance.
According to 2019 World Bank Data, Nigeria’s out-of-pocket health expenditure was 70.52 per cent while Ghana was 36.22 per cent and South Africa, 5.69 per cent.
A data technology company, Knoema, indicated that private expenditure on health as a share of total health expenditure was 71. 3 per cent, government expenditure on health per capita was $12 and the social health insurance as a share of current health expenditure was 0.8 per cent.
Worrisome situation
In a country reported to have the fourth highest prevalence rate per 100,000 populations of kidney diseases, a looming tragedy is on the horizon for the health care system currently battling a mass exodus of health workers and low budgetary allocations and funding.
The dearth of dialysis centres in Nigeria is no longer news. The peer-reviewed journal of the International Society of Nephrology, Kidney International, listed Nigeria as having only 80 dialysis machines with a dialysis population of 300.
Kidney.org stated that over two million people globally currently needed dialysis or kidney transplant to live. However, Nigeria has about 140 private and public dialysis centres with the majority of them located in Lagos State and Abuja, while some states such as Taraba, Bauchi, Ebonyi, Gombe, Yobe, Taraba and Jigawa have only one dialysis centre.
Our correspondent gathered that a dialysis session costs between N25,000 and N35,000.
Also, a kidney transplant, which is the preferred treatment for chronic kidney diseases, costs between N13 and N20m.
Load of care
The pain of a sick relative was not only borne by the patient, family members suffer the constant hospital stays and visits. Some of them, despite being ill, wouldn’t leave the bedside of their loved ones.
For five years, a 28-year-old graduate of the Federal Polytechnic, Ilaro, Ogun State, Tobiloba Osikanmi, has been battling kidney disease. But a few weeks ago, it became chronic and he had to be admitted to a hospital where he currently undergoes dialysis.
Though Tobi’s father, Toyin Osikanmi, said the doctors’ conclusion was to have a transplant, he added that the dialysis fee of N50,000 per session was what he could afford.
The joy of having a graduate was diminished by the constant medical bills coupled with the fear of losing his son.
Osikanmi said, “We have been battling with the issues for five years now. When it first started he was given some drugs and it subsided but it returned. He just completed the Higher National Diploma programme at the Federal Polytechnic, Ilaro and set for the National Youth Service Corps scheme. But he can’t go now because of his condition. I have spent a lot of money and I can’t calculate how much. This is not a thing of joy for me. For now, I don’t know how I can keep up with the bills.”
He noted that the best solution for his son was a kidney transplant costing N10m, wondering how he could afford it.
Osikanmi, who works with the Ogun State Primary Education Board, stated that he visited him early in the morning and returned to his place of work and his wife replaced him in the duty.
“Due to the high cost of the drugs, the little money we have is diverted to his care. I also took a loan from a commercial bank and that is what is used to keep up with payments. I have spent a lot all together. I need all the assistance I can get,” Osikanmi stated, sadly.
Countless days at hospital
The prayers of a PhD student battling chronic kidney disease in need of a transplant, Oluwaseun Adegbola, were answered after receiving donations after PUNCH report.
However, his wife, Titilope said she had to leave her children with relatives and at times, go on for days without speaking with them while she took care of her husband.
As of the time she spoke with our correspondent, Titilope said that despite taking treatments for an ailment, she still had to remain at her husband’s hospital bedside.
The Adegbolas who initially started treatment at the Osun State University Teaching Hospital, Osogbo, stated that they were referred to a private clinic in Abuja for the transplant.
Although grateful for the help received and the successful transplant, Titilope noted that her husband would still require medications and a job.
Apart from the burden of payment, the stress of the hospital runs, errands and watching the pain of their loved one is another challenge family members face.
Life was going on well for an engineer, Gbenga Oladimeji, until November 2021, when he took ill and was diagnosed with kidney damage. He said that the doctors told him that hypertension which he had nursed for 15 years damaged his kidney.
It was gathered that his family was currently struggling to get money for treatment. Oladimeji told our correspondent that he missed out on some of his dialysis sessions due to financial constraints and couldn’t raise money for a transplant.
He further said that families, friends and the church had been supportive financially, adding that the journey in that regard was not easy.
Oladimeji said, “I have been nursing hypertension for the past 15 years and it’s hereditary. I have done more than 20 haemodialysis since this case started. I am still expecting to do more.”
His wife, Bola, also said that combining care of her husband at the hospital and returning home to cater to the children was herculean.
She stated, “The whole thing is hard but I don’t have any choice. I take care of him in the hospital and return home to take care of the children. I also manage my own office. We hoped that the dialysis would make him get better but the consultant said that a kidney transplant was the lasting treatment. We have been praying that everything will soon be over.”
However, she said that it was tough getting funds for the procedure, adding, “We have begged here and there from families and friends including the church. But we don’t even know what else to do again. We need help.”
“Lifestyle, underlying sickness trigger kidney disease’’
On the causes, care, treatments and cost of treating kidney diseases, Nephrologists have said that genetic factors, lifestyle, and underlying diseases such as hypertension, diabetes and sickle cell were common known causes.
Commenting on the issue, a professor of medicine, Jacob Awobusuyi, stated that the genetic risk factor in Africans coupled with the aggressive wave of hypertension predisposed them to kidney diseases.
The nephrologist added that the gene made black people four times more prone to kidney diseases than other races.
He explained, “We tend to have more chronic kidney disease compared with other races. Recently, we seem to have an idea of the possible cause. We have this gene that is common among the African race that is called, Apolipoprotein L1 kidney risk variant. It is common especially in West-Africa, in the Southern part of Nigeria, the South-West, South-East, Cameroon and the coastlands. The population risk variant is about 23 per cent of the population and it predisposes us to kidney disease.”
On the cost of treatment and transplant, Awobusiyi said that the average cost of dialysis was pegged at between N25 and N30,000 per session to be done thrice a week according to the standard dialysis session.
He noted, “Apart from dialysis, the patient is expected to receive a blood booster which is about N8,000 per dose, three times a week. Apart from that, most of them will be on anti-hypertensive drugs and those that are diabetic will be on anti-diabetic drugs. The cost of taking care of someone on dialysis is enormous. With transplantation, the patient will require between N10 and N12m for the initial transplant and will also require drugs to maintain the kidney which is about N250,000 per month, or around that amount. It is expensive to maintain the kidney after transplant but it is a better option than dialysis because patients who have transplants live longer and better quality lives.’’
He added that after getting funds for the transplant, getting a donor would be the next hurdle to cross.
The nephrologist added that the first options of donation were the patient’s relatives, “because you are likely to get an identical match. If you have a sibling coming forward to be evaluated, chances are that you may have a complete match in a quarter of cases.
“In half of the cases, we have a half match between the father and mother, chances are high that there is someone who is 50 per cent matched with the patient. But most of the time, when the donors are matched, they tend to have some kind of issues with the donor. It’s either the donor is hypertensive or coming from the same family, and has protein in the urine which is an indication of kidney damage. Many times, somebody brings a donor forward and they find out that the donor cannot proceed because of one disease or another.”
Awobusuyi added that the shortage of matched relatives made some patients to look elsewhere which then formed the basis of the search for paid donors, a process he described as illegal.
He added that the association of nephrologists and transplants advocated the possibility of a cadaveric donor programme as practised in North America.
The don said, “They have well-organised systems in which individuals that die in the hospital, especially in the intensive care unit, their families can be approached and if they agree, organs of such individuals can be used for transplantation and that is what we are working on. But it’s an uphill task. With the ritual killings going on around, the acceptability of such a programme might be a bit hard in our society. What we are doing now is to get a strict law that stipulates a long jail term for those who contravene the law. That would probably set us on a good platform to proceed.”
He explained that non-relative donors were referred to as “emotional neo-related donors’ but such donation would only be accepted if done as an altruistic kind of act because body parts cannot be bought or sold as a commodity.”
Another nephrologist, Zumnan Gimba, stated that the dearth of dialysis centres and facilities was a reflection of the state of Nigeria’s healthcare, adding that the low budgetary allocations and migration of health workers indicated inadequacy of patient care.
Gimba pointed out that there was a cluster of dialysis centres in the urban areas compared to rural areas.
He stated that states with a few or without dialysis centres made patients living in the hinterlands travel long distances and for nephrologists to extend their services to more than one centre.
Gimba further stated that adequate funding for health care services would improve better care of patients in need of dialysis.
The nephrologist further stated that chronic kidney disease meant that the kidney had been damaged and could no longer recover on its own, adding that dialysis provided temporary care while a kidney transplant was the prescribed treatment.
Gimba said, “Hypertension is one of the leading causes of kidney diseases which can cause kidney failure. So, someone can have kidney disease and can be treated with medicines. But if it gets to kidney failure, then the person can only survive by dialysis or transplant. Diabetes is another. If we look at just these two causes, there are a good number of people who either have or have relatives who have hypertension or diabetes. This gives an idea that if care is not taken many people was at risk of chronic kidney disease.’’
He added that several misconceptions and beliefs about hypertension caused the undertreatment or lack of treatment of the disease which over time would lead to kidney failure.
He said, “Some people may say that they only take their drugs when their blood pressure is high and they may be walking about feeling that they are fine but the BP is high up in the roof. So when the BP is high, it kills the cells that work in the kidney so the higher the blood pressure, the more the cells will die and once they die, they don’t grow back, that is why it is on the rise.
“Glomerulonephritis is another cause of kidney disease. It is a cluster of many things that will cause damage to the kidney. Some are related to infection, some could be the body fighting against itself and pregnancy could be the case at times.”
He added that lifestyle such as habitual use of painkillers, and herbal mixtures further damage the kidney.
The doctor also said that the genetic makeup of black people also caused kidney disease.
Gimba added that the process of the donation was regulated to prevent organ sale and harvesting, stating that donors were usually got from family members or voluntary donors.
Also, a doctor of internal medicine, Olushina Ajidahun, stated that kidney damage for a long time would lead to chronic kidney disease.
He noted that the morbidity and mortality rate in Nigeria was almost 50 to 70 per cent.
He added that chronic kidney disease in younger persons was caused by glomerulonephritis, stating that other causes of the disease were infections, Hepatitis B, HIV, herbal concoctions and drug abuse.
Ajidahun stated that people watch out for signs of dizziness, weakness, swelling in the limbs, foamy urine, yellow eyes, hiccups, vomiting or excreting blood and itching.
The doctor added, “Managing kidney disease is expensive, apart from that, it takes a toll on the family’s finances, psychology and in most cases, family members put their lives on hold to take care of the person and pull funds together.
“The trend is changing. You see many people in their late 20s and 30s, coming down with kidney diseases. People should be aware of the disease and go for tests and screening of their blood pressure, blood sugar levels and HIV. Healthy eating is important, cut down alcohol intake, cigarette smoking and reduce salt intake. Avoid drugs and herbal concoctions. We have a pandemic of kidney diseases and the mortality rate is high. There is the need for more awareness on social media and other media.”
People with kidney problems left on their own –NAN
On her part, a paediatric nephrologist and President, Nigerian Association of Nephrology, Dr Adanze Asinobi, decried the low budgetary allocations to the healthcare sector, stating that the situation caused lack of adequate medical facilities in government hospitals.
She called for a revisit and improvement on the budget for the health sector and availability of medical facilities, adding that such would reduce medical tourism, patients’ deaths and physicians from the country.
Asinobi said, “People with kidney problems are left on their own when the government should support them. In the United States of America, there is free treatment for kidney diseases then anyone who now wants additional comfort, can pay a little more through their insurance. But here, for over 50 years ago when the solutions to all these problems were found, our people are still suffering.
“Our people were trained in various parts of the world and when they come here, they don’t have anything to work with. So it is not just looking for money or greener pastures but job satisfaction. Some of us are so dedicated that we want to serve our fatherland but the facilities to work with are not available.”
She further said that though the present data of kidney patients in Nigeria was 20 million, the figure was obtained only from cases in the tertiary health care centres.
She added, “We lack appropriate data and we need to do a national survey. The data we have are for patients that get to the tertiary centres where we can make the diagnosis, investigate and confirm the diagnosis. Many of our patients are dying in the community. For us as an association, we want to do a community-based study to get as accurately as possible the magnitude of the problem.”
The nephrologist noted that there were only about 250 nephrologists in the country, adding that due to the high cost of haemodialysis some patients could only afford once a week session despite the recommended thrice a week session.
“Many of our patients die within three months having sold all they have and this is not what is happening in other places of the world where the government supports renal replacement therapy,” she stated.