Humanity transcends all boundaries

Prince-Abdul-Aziz-bin-SalmanJEDDAH: In an old-fashioned and very overcrowded annex to King Fahd Hospital in Jeddah there are some committed professionals who routinely save lives on a shift system 24 hours a day.

Some of the work is, like the emergency room or the hospital’s operation theaters, caused by unforeseen accidents. The vast majority is simply a medical housekeeping job; cleaning up the blood so that patients with chronic kidney failure can lead some semblance of a normal life.

The technique has been around since Dutch Willem J. Kolff invented the kidney dialysis machine (which he never patented) in 1946. He died three days before his 98th birthday in February this year. His invention has saved the lives of millions.

The renal unit, originally designed to accommodate 30 beds but filled with 68, is a surprisingly quiet place, the patients resting and linked up by tubes to humming machines that filter their blood for impurities hours at a time. There is a strange atmosphere of resignation and normality pervading the unit while nurses scurry efficiently from bed to bed checking dials and pressures on the dialysis units. They have to, because the 68 machines with a 15-year design life are being worked so hard that they become unusable in five. Two more are kept as spares but are frequently hooked up to meet an emergency case that arrives without warning.

Blood must be changed, lives saved and machines worked to the maximum to ensure patients stay alive. They do — but the social and financial cost is huge. Chronic renal failure — where both kidneys fail and no longer filter the blood for the impurities that will, if left to accumulate, kill you in short order — is more common than generally realized. Classless and without regard for financial status or creed, the disease can be brought about by a variety of causes.

The most common causes are diabetes (endemic in Saudi Arabia), high blood pressure, glomerulonephritis (a painless inflammation of the kidney’s filtering mechanism that leads to high blood pressure), polycystic kidney disease, scarring from childhood infection and obstructions in or after the kidney that cause back-pressure build-up. Onset is usually slow and always has a socially crippling effect on both patient and family. In Saudi Arabia, about 11 percent of patients with permanent kidney failure die. Once afflicted with chronic renal failure, the only options open are kidney transplant or three-times-weekly dialysis for life. The former is expensive and depends on availability of a kidney, the latter a crushing social and financial burden on a family for the rest of the patient’s, sometimes long, life.

Specialized renal dialysis units are not found in every hospital. Many hospitals have a few machines, but a unit the size of King Fahd Hospital is very rare. It is stretched to breaking point, but the patients seeking its life-saving services are increasing in number.

Help is at hand however — very real financial help to supplement the huge amounts of money given by the Ministry of Health. And, said Prince Abdul Aziz bin Salman, supervisor of the Prince Fahd bin Salman Charitable Society for the Care of Kidney Patients, it is coming from the public.

Prince-Abdul-Aziz-bin-Salman2“We are very much focused on permanent kidney failure, helping create new dialysis centers, or providing new dialysis machines or create that service to make available to legal residents of Saudi Arabia,” he said in an interview with Arab News. “Creed, color or religion are not issues for us.” He pointed out that 80 percent of the recipients of the charity’s program were not Saudis. “The only conditions are that he or she should be a legal resident and that he contracted the disease in Saudi Arabia.”

Prince Abdul Aziz emphasized the breadth of the condition. “It is not a class disease — lower income families and patients suffer more — but even from a well set-up family there is a social drain. You can live on dialysis — unlike liver failure where you have to find an immediate donor. With a kidney it is all or nothing.”

At the unit, the deeply experienced and seemingly unflappable Head Nurse Estrella Bustamante added some detail. “There was a confusion as to the Islamic propriety of giving or receiving a kidney,” she explained. However, there was a fatwa issued that you could receive and give kidneys — but without charge. “It works across religion and is person-to-person. The only limitation is that the there is a correct cross-match between donor and recipient.”

The King Fahd’s unit currently treats visitors from outside the Kingdom if they arrive for Haj or Umrah. As a chronic sufferer requires dialysis three times a week, they cannot simply be turned away. Many visitors access Jeddah’s private hospitals for their treatment, but the costs are high.

In the government units the costs to the patient are nil. “The medication before, during and after the dialysis — one injection during the dialysis costs SR150 each time, and each patient goes through three dialysis a week,” commented Prince Abdul Aziz. “Just calculating that up — a simple injection — is SR450 a week, SR23,400 per year.”

That is a massive amount of money when multiplied up to the number of sufferers and more than any government could reasonably bear.

With private clinics, the numbers really increase. “The charges can be SR1,200 per dialysis — three times a week totals SR187,200/year. This is just dialysis — not medication, staff and unit costs.”

Bustamante said that some families that attended her unit brought in two or even three patients. This seems to indicate genetic predisposition might have an influence on kidney failure.

In 2003, the International Society for Nephrology came to that conclusion in a paper by Donald W. Bowden, Ph.D., of the Center for Human Genomics in North Carolina. “Evidence from multiple lines of inquiry suggests that the susceptibility to develop renal disease has a significant genetic component. Studies of familial aggregation, different incidence rates in different racial and ethnic groups, and segregation analysis are all consistent in pointing to a genetic contribution to renal disease.”

The problem is here to stay.

“The social and financial costs are crippling,” said Mona Bangash, the hard-pressed full-time social worker attached to the unit. “The whole family is affected, the ability to work and generate income limited and from that comes a huge range of problems.” She said that her brief was to assist in any way she could to ameliorate the effects of the condition on the family. “We do whatever we can,” she said with a sympathetic shrug of her shoulders.

The philosophy of the Prince Fahd bin Salman Charitable Society for the care of Kidney Patients had, said Prince Abdul Aziz, several pillars.

“We are a charity — we cannot compete or substitute for what the government provides. Our role is to aid, support or complement what is being done,” he said. “In that we are driven by two things. We believe that the state is a good provider of healthcare — but no state in the world can be the sole provider.”

This, he said, led to the second driver — the understanding, particularly in Islam, that charity is a general feature of most societies for research, services and medical concerns. “So our role is to see if we can add to or complement it.”

What distinguishes the charity was how donations were collected and used.

“First, we have to be innovative in how we collect and not be too reliant on the wealthy side of society but try to put together a system where we reach out to the mass. Then you are not vulnerable to a small group of big donors.”

He explained that if that could be worked out, the flow of funds would be continuous and give reliability to sustain the charity’s obligations to the patients, knowing that these patients might have to be on dialysis for many, many years.

“Some are unfortunate in that they cannot find the right kidneys, the right donor — so once we take on a patient, it might be for a year, five years or forever. Given this, then before we commit ourselves we must be in a position where we can discharge our moral obligations and commitment to him.”

While large annual donations were very much appreciated, they can prove unreliable.

“That was brought home to us this year when some of those who were committed to us found they could simply not do so any longer. That was very hard to believe. The fact is that there are people who obligated themselves to perhaps five patients but later had to say: “I lost my money” and went bankrupt. So spreading the community you rely on for collection is much better.”

The charity devised the scheme whereby huge numbers of small donations could be efficiently collected through the good offices of Saudi Telecom and their SMS service. Dialling 50 60 and sending the number as a text allows the sender to commit an amount on their monthly bill to he charity.

“This brings the student, the average person, the working mother and even the child in by making giving simple and easy.” It also disseminates the culture that any size of contribution — one or ten riyals — from the giver is important.

“We also want to make sure that people are satisfied and assured that their money is not being abused. Transparency is the thing.”

Whatever program in the charity that the donor chooses, the money goes to a fund dedicated to that program. “That creates an important bond and credibility with the donor. If you choose to pay for a patient’s entire treatment for a year — we pass on the contact details and you can visit him.”

The administration of charities frequently uses a large part of the donated income. In this case however, administration costs are zero.

“Our theory is that the institution is a “virtual institution” rather than physical. In theory physical institutions work well.” However they are cumbersome.

Prince Abdul Aziz took the example of the Green movement as a virtual institution. “From a small room, a director and an assistant can access writers from around the world to get information and stories — it’s a virtual institution. The viability of an institution depends on how much you get in the way of committed obligation not just today, but for generations.”

The secret to the zero-administration cost is the use of committed volunteers and the charity’s use of volunteers’ established business facilities rather than cash as a donation.

“If we can get people to work as volunteer workers, we reduce operating expenses — and added value. If I bring someone in as a volunteer manager of a committee, I access the use of their staff and facilities at no cost as well as his relationship with them. I end up with higher quality people at no cost as they have contributed people to work with us. So we end up with money not spent on administrative costs.”

Since the 50 60 SMS donation drive started two years ago, 2.7 million STC users have donated money some many times, some only once. “But that is fantastic — over two years 2.7 million people have had the guts, the courage and the understanding to donate — some have done it 500 times, but all at least once. We call them our community.”

The challenge now was to sustain and develop that community. “How can we encourage single-time donors to give again, how can we sustain multiple donors and how do we reach those who have not yet contributed?

“If I can get that 2.7 million — or even half of them — to agree to 12 riyals a month, then it gives you the permanent continuous flow that enables to commit to the patients plus or minus a few percent.”

“We have to counter and defeat the argument that ‘I as a person cannot do much’ — you can overcome this ugly sensation by saying ‘I can make a difference’ — every message, every riyal counts.”

There is a new custom-built, 140-bed renal unit under construction at the King Fahd Hospital — partly funded by the charity. However, best estimates are that it will not be fully operational for two years. By the time it is complete the increasing numbers of patients may well require that it complements rather than replaces the current aging unit.

In the King Fahd unit there was a commotion: An emergency had arisen and there was a patient in desperate and immediate need of dialysis. Nurse Bustamante quietly went to attend. Was there a spare and operative machine and would the patient survive?

Perhaps; but as always it would, as the Duke of Wellington said of Waterloo, be “A damn close-run thing.”