Extending SA’s Transplant Bequest to Our Own Children

(A composite article published in newspapers in April.)

On October 11 last year, I received a donor heart in a transplant operation at the private Christiaan Barnard Memorial Hospital in Cape Town. I was the 216th heart recipient to come through the hospital’s heart transplant programme.

I’ve blogged at www.wordpix.co.za of my journey through heart failure and healing. Many will appreciate one description of my experience – surreal, a word voted by Merriam-Webster dictionary as their best word for 2016 and which I used when I first tried to communicate what I was going through six months ago.

But, my family and I are cognisant that what has taken place in our lives is best described as a miracle, aided by awe-inspiring medical skills and reflecting the sacrifice of my donor (and her or his family).

I am alive, with a heart in my chest that beats strongly, allowing me to breathe deeply and satisfyingly, to activate my entire body. I have a destiny beyond simply making it to the next place where I can stop for rest and respite. With that comes also the obligation to ensure that this gift of life is not wasted.

It is necessary to talk much more about heart failure & possible treatments, in the context of the growing occurrence of heart disease in our community and with the World Health Organisation reporting that almost 1 in 3 global deaths are attributable to heart disease.

I’ve realised, sadly, that I am one of only a few – an exclusive group that California cardiologist Dr Michelle Kittelson terms the “one percent club” – who will experience this life-giving treatment in our country, because of:

• Lack of healthcare resources – especially tertiary health facilities – for the majority, poor and rural people;
• The high costs of the transplant procedure and the post-op tests and medicines required on an ongoing basis to support the recipient’s new heart;
• Poor socio-economic conditions that militate against the level of essential physical care required after transplantation.
• Low rates of organ donation throughout our country.

In a context where only one in 10 South Africans is likely to enjoy the benefits of general cardiac surgical skills, let alone transplantation treatment, there can be no virtue for me in membership of a privileged one percent club.

While I will forever be thankful that private medical aid resources enabled me to receive a donor heart at CBMH, I have become increasingly concerned about South Africans who are cut off from this life-giving treatment.

Without access to medical aid, most South Africans cannot afford the high costs – at least R750 000 – of a heart transplant in a private hospital, which does not include the high monthly cost of ongoing medication and tests. The cost of a new artificial heart – also now available at CBMH – can go up to R2-million.

Given that most of us don’t look after our bodies very well, it’s easy to think that those who have heart disease are simply guilty of over-indulgence of food and drink, and lack of exercise. That may be a big underlying reason why the South African Government has scaled back on heart transplants in the public sector, the assumption being that this illness is self-inflicted and the state should not be expected to pay for poor lifestyle choices.

But cardiovascular disease can also be genetic or the result of viral infection. Many, very sick children are born with congenital heart defects every day. That is why Government must CONTINUE to resource organ transplant programmes, despite the necessary focus on primary healthcare in a country like ours.

By saying that organ transplants are an unnecessary financial burden on society, we are saying to ill children in poor communities throughout our country that ‘you are not worthy of receiving the best healthcare our society has pioneered for the benefit of all humankind – and you must simply get ready to die’.

That is exactly what the Groote Schuur Hospital (GSH) and University of Cape Town (UCT) cardiovascular unit said a few years ago in a review of the decline of its services. In a 10-year review in 2014, the unit found it had suffered more drastic cuts in State funding than other specialist units as government shifted tertiary healthcare resources to primary treatment to avoid benefitting only a “few patients at significant cost”.

This year marks the 50^th anniversary of the first heart transplant at the unit by Professor Chris Barnard but, since democracy, the unit has lost its edge to the private sector, as government’s healthcare focus changed to primary treatment of illness.

It’s difficult to get exact figures on how many heart transplants have been performed, but by piecing together various research reports, it can safely be said that of the few hundred thousand operations that have occurred internationally since December 1967, only a tiny fraction have been done in South Africa, and the majority of those in recent years in private hospitals.

In 2015, nine heart transplants were performed in total in both public and private hospitals in the Western Cape, according to the Organ Donor Foundation, which does not provide figures for individual hospitals.

Changing the focus of our healthcare resources to primary health cannot mean, however, that people who depend on the public health sector and who need other treatments must simply disappear – or die. There is almost zero access to heart surgery for poor people in rural areas of the Western Cape, who typically die without treatment, according to the GSH-UCT unit’s self-assessment.

The situation is hopelessly worse for such people in the Eastern Cape who “are doomed to endure their heart disease without appropriate treatment, typically eventually dying without access to proper cardiac care”. It is worrying that, in StatSA’s 2015 mortality report, the cause of one in five deaths is unspecified and listed as “other natural causes”. How does government purport to provide effective healthcare when it does not even have the proper numbers for disease.

Apart from the costs of transplants, especially heart procedures, the shortage of donors is the single biggest factor militating against greater numbers of transplants in SA.

This is something you can address immediately. You can agree that, when you die, your organs – heart, lungs, kidneys, liver, cornea, skin – may be used as life-saving treatment for another critically ill person.

Waiting lists of people needing organs are on the rise, but the numbers of donors have not increased. Currently, the organs of only about 300 South Africans who die every year are donated for transplants of any kind.

Ironically, “more aggressive” medical treatment which make it possible to save the lives, for example, of those critically injured in road accidents, has lessened the number of potential donors.

There are valid concerns which people have about organ donations but all of these are appropriately answered by the Organ Donor Foundation. These include a fear that an organ might be removed prematurely. However, in terms of medical protocols, two independent doctors must certify the brain death of the donor before the transplant team can step in to remove an organ. Also, every effort is made to ensure the body is not left disfigured for burial purposes.

Doctors, too, need to be proactive in advising the families of patients who are near to death to consider donating an organ of their loved one to enable the life of another.

Organ donations, critical as they are, constitute just one part of the needed response to heart disease in South Africa. But all the necessary responses are up to us as well.

South Africa bequeathed to the world a world-class solution to heart failure in 1967. We, citizens of a democratic SA, whether we be healthy, diseased or transplanted, must ensure that our children born with this disease are given the best chance to live.