Legal gaps stand in way of organ transplant in Uganda

Felix Okello Odukur, 63, a retired veterinary doctor, has given up hope on ever living a normal life again.

Seven years ago, he was diagnosed with a chronic kidney condition which was precipitated by hypertension. The only way around it was to secure a kidney transplant in India, but the cost at $25,000 (about Shs90.3 million) was way out of his reach.

Even when his son offered to donate one of his kidneys, Mr Odukur would still need the money, but his efforts to save the amount soon turned out into an insurmountable attempt akin to climbing Mount Everest without any external reservoir of oxygen.

“Sometimes I would raise nearly half of the money but with the fluctuating dollar [rate], the money kept dropping to a quarter [of the required] until I gave up” the father of three narrates.

Since then, Mr Odukur has been surviving on dialysis; a process of cleaning of the blood to rid it of waste products and excess fluids when the kidneys are not functioning properly.

There are two types of dialysis; namely haemodialysis, where the blood is put through a filter outside the body and cleaned before being returned to the patient. This can be done either at a health facility or at home.

The second type is peritoneal dialysis, where the blood is cleaned from inside the body. It involves placement of a special fluid in the abdomen of a patient to absorb the waste from the blood which passes through vessels in the abdominal cavity. The fluid is then drained. This is usually done at home.

It is medically recommended that a patient has three dialysis sessions per week, each of which costs Shs60,000, but Mr Odukur cannot afford to raise the Shs180,000 for the three sessions. He has to make do with two sessions, which costs him Shs120,000 per week.

“I ended up spending even the little money I had raised from friends and family after the sale of some of my property to continue paying for dialysis and buying drugs.”

The high cost of treatment saw Mr Odukur deplete all his savings and sell off most of the assets he had acquired while in the service of his country. He now survives off a meagre monthly pension, which at times does not come.

“I am only living with the Grace of God. My hope is that some well-wisher may come to donate to me some money,” he says.

The challenges that Mr Odukur is facing mirror those of the other patients who are in need of f kidney, liver, heart, cornea, heart and born-marrow transplants, many of whose lives have been cut short because they cannot afford alternative treatment like dialysis.

Kiruddu General Hospital in Kampala is the only government facility that has until very recently been providing dialysis services at a subsidised fee of Shs60,000 but the cost shot up to Shs190,000 after the facility ran out of reagents. It is now up to the patients to buy them.

The cost of dialysis is much higher in private health facilities with the service now costing between Shs270,000 and Shs600,000 per session.

Most Ugandans, who according to the Uganda National Household Survey Report 2009/2010 , who earn only Shs303,709 (approximately $85), find dialysis, an alternative to a transplant, out of their reach.

Ordinarily, one needs at least $25,000 to $30,000 to cater for the kidney transplant and transport fare for the patients, the donor and the caretaker for the time they have to stay abroad for treatment in India, but this amount does not factor in the possibility of the patient or the donor developing complications.

Little wonder then that sections of the electronic and print media are awash with advertisements calling for public support in raising funds to undergo a lifesaving operation outside the country.

According to Dr Jackson Amone, the Chairman of the Medical Board, which is charged with qualifying and recommending patients for treatment and possible funding abroad, 14 patients were recommended in 2016, but the number of those who qualify may be even twice higher. It is not clear who of the 14 managed to get government sponsorship for treatment.

“It is not mandatory for all public servants to qualify to be sponsored by government to go abroad for treatment. It depends on the budget of the particular department you work for,” Dr Amone explains.

However, in most cases, it is only those who can afford or have prospects of getting the money for treatment who approach the Medical Board.

The best way around those costs and the troubles involved in raising money for treatment would have been for the transplants to be done at home. The Executive Direct of Mulago Hospital, Dr Byarugaba Baterana, says the cost would come down to $8000 (approximately Shs25 million) if the operations were to be carried out at home. That would be almost a third of what one would have required for a transplant in India.

Dr Simon Peter Eyoku, a Senior Consultant Nephrologist who is also the Head of Mulago’s Renal Unit, says 90 out of the 110 patients who have kidney-related complications require transplants. This appears to be the easier of the transplants as kidneys can be harvested from a live donor. The same applies to parts of the liver and the lungs.

On the other hand the heart and the cornea can only be harvested from a donor whose brainstem, the part which controls breathing has ceased functioning and there is no chance of survival.

A person in such a state is deemed to be brain dead. Brain dead patients are usually in a vegetative state and are only kept alive by life support machines.

Legal roadblock

Unfortunately, the operations cannot be done at home because Uganda has never instituted a legal framework to provide for the same.

Uganda currently follows the World Health Organisation’s (WHO’s) Guiding Principles on Human Cell, Tissue and Organ Transplants which only allow harvesting of a needed organ from a living donor.

The guidelines also stipulate among other things that cells, tissue and organs should be donated without any monetary payment or other reward of monetary value and that execution of the donation and transplant must be transparent and open to scrutiny.

In the absence of an enabling law, no form of harvesting of any kind of body part can be carried out and no person can make a will directing that some of his or her organs can be given to a donor once they are brain dead. The law prohibits harvesting of human tissue from dead bodies.

Dr Juliet Otiti, an Ophthalmologist (eye specialist) at Mulago Hospital, says the cornea transplants are mostly conducted in Kenya, United Kingdom and USA because Uganda does not have a cornea bank to store the organs.

Patients who need surgical procedure to replace damaged cornea with a healthy corneal tissue must part with a minimum of Shs15 million (approximately $4,150) to have the tissue imported or the operation conducted abroad.

This is therefore hampering cornea and heart transplant operations and possible local research and advancements in that field of medicine.

The Deputy Director of the Uganda Heart Institute (UHI, Dr Peter Lwabi, says this legal hole has inhibited some of their operations and confined them to the use of artificial valves other than human valves in the treatment of those with leaking valves yet use of artificial equipment is far much more expensive.

“The mechanical tissues require the patient to stay on costly medicine for life so as to keep the blood diluted [so as not to clot] and also limit the patient from doing certain things,” Dr Lwabi says.

Matters are further complicated by the fact that the country also lacks the required technical expertise to deal with post-heart transplant scenarios.

“Even if we recommended someone for a heart transplant like in India, that would mean they have to stay there for the rest of their lives because the country does not have super specialized experts to offer the continuous after-transplant heart treatment,” he explains.

Ray of Hope
But Dr Byarugaba Baterana now says with or without a law, the National Referral Hospital Mulago will soon start offering kidney transplant services effective October this year. He says that all that it will take will be for the Minister of Health to issue a statutory instrument.

However, some legal practitioners doubt the assertion, casting doubts about the legality of such a move.

Human rights lawyer Ladislaus Rwakafuzi says a legal instrument can only be valid if a law is already in place.

“So there must be an Act of Parliament because the Statutory Instrument does not create offences and rights. So a statutory instrument may not be so strong and because this is a new science [in Uganda], it may require a law in place,” Mr Rwakafuzi argues.

Status of the law
The Acting Director General of Health Services in the Ministry of Health, Dr Anthony Mbonye, says the principles of the Organ and Human Transplantation Bill, which target to regulate the organ transplantation, donation, harvesting and importation into the country, have already been submitted to the Cabinet.

“The principles include the aims and objectives of the Bill. It is from there that they will be taken to the Parliamentary Council to draft the Bill before it is taken to Parliament for reading and debating and later on passed into law,” Dr Mbonye explains.

Although not certain on when the law will be ready, Dr Mbonye stresses that it has to be expedited or else organ transplantation cannot happen.

Other limitations
Meanwhile, as Dr Mbonye and his team and the Cabinet are working on putting a law in place, it would appear that the donation and transplant of organs is actually under threat from a very different, but extremely important aspect in the lives of every Ugandan – cultural beliefs and practices.

Various communities in the country believe that they have to be buried with all their organs in preparation for the “life after death.”

“The fact is; there are more potential organ donors among the brain-dead humans than the living humans. The challenge only comes with the attitude towards donation” Dr Eyoku says.

He adds that even with the sensitization after which people would accept to donate, the programme may not be as effective if the healthcare system in the country is not well coordinated.

Dr Lwabi cautions that even if someone signed a declaration to have their organs donated in case of death in an accident or an organ unrelated illness, getting to hospital may be hard because the body may have to be airlifted for the organ has to be harvested within the shortest possible time.

“There has to be a very well-grounded healthcare system,” he warns.

For now, until a law has been put in place and the requisite equipment installed in some of our health facilities, Mr Odukur and others who suffer similar conditions can only hope that something happens and happens very soon for them to regain any hope of living a near normal life again.

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