Dark future

03 March 2009

Dark future

Thousands of South Africans are being denied the corneal transplants that could save them from permanent blindness. And the government's policy on transplantation may be to blame.

A corneal transplant is a highly successful procedure but even so most people suffering from corneal disease don’t have their eyesight restored. That’s because most corneas end up in the trash as a result of a new government policy on organ transplants
By Elise-Marie Tancred

Five years ago Sharon van Mechelen (38) was the ultimate water baby. This sports-mad young mother lived an active life, skiing, swimming and diving regularly. She loved every minute of it.

Fortunately, her soft contact lenses for short-sightedness made life easy. Or so she thought...

But in early 2003, just 10 months after the birth of her second child, Sharon’s sight began to deteriorate.

“Eventually I could only distinguish between light and dark,” she says. Within a year she was practically blind and completely dependent on those around her.

Fortunately, in 2004, a simple operation restored her sight and independence. Donor corneas replaced her severely damaged ones and a day after the procedure she could see.

“Everything was so clear – it was like a miracle,” says Sharon, who hails from Durbanville but now lives in New Zealand.

“The last time I’d seen my baby he was 10 months old – and he’d changed so much. When I was blind he avoided me and wouldn’t let me hold him. After the transplant I could look into his eyes and cuddle him again.”

This kind of transplant is necessary when the cornea – the transparent covering of the eye through which light penetrates – is irreversibly damaged. Impairment can be caused by congenital corneal defects, illness, viruses or – as in Sharon’s case – infection.

Single-celled organisms that live in rivers and dams – Acanthamoeba – nested in the hollows behind her contact lenses, causing small abscesses that destroyed her corneas. Fortunately for Sharon, the transplant turned things around.

Many other South Africans have similar stories of escaping the blight of blindness. That’s what makes the corneal transplant one of medical science’s greatest achievements. It’s regarded as the most successful transplant procedure, with a success rate of over 92 per cent.

In a small percentage of cases the donor cornea may be rejected by the body or the stitches may come loose so that the operation has to be repeated. The transplant is also an inexpensive procedure, costing less than R5 000 per local cornea used. The total cost of the operation is roughly R40 000.

But the future is bleak for the thousands of South Africans who are waiting to have the operation. The dire shortage of donor corneas means they might never see again, thanks to short-sighted government policy.

Ironically, in a country where people die every day – in road accidents, through violent crime or ill health – there should be more than enough donor corneas.

But recent legislation laid down by the Department of Health has made it extremely difficult for surgeons to get the corneas they need. “It’s an absolute tragedy,” says Dr Harold König, president of the Ophthalmological Society of South Africa.

König says about six years ago, ophthalmologists could get up to 80 corneas a month from eye banks. Two years ago that number dropped to 40 a month. By June 2008 there were only three corneas available – one of which was older than 14 days and couldn’t be used. The following month there were none.

There are about 4 000 patients on official waiting lists at South Africa’s five eye banks. But most government hospitals no longer even add potential cornea recipients to the list as there’s no point.

“We could save these patients’ sight if we could get hold of corneas,” König says. “It’s a very serious problem and the Department of Health is doing practically nothing. We hope that now, with the appointment of a new minister, progress can be made.”

The crisis began when it emerged that staff at some government morgues were dealing illegally in body parts. The then Minister of Health, Dr Manto Tshabalala-Msimang, responded by transferring the morgues previously under the jurisdiction of the South African Police Services to that of the Department of Health.

An embargo was placed on information, thereby preventing government morgues and hospitals from notifying tissue and organ banks, including eye banks, when organs were available.

As a result, eye banks cannot contact relatives of the deceased to ask for the donation of their corneas and hundreds of corneas that could restore the sight of many patients are being buried or destroyed daily.

This year, the Cape Eye Bank hasn’t received a single cornea from the Salt River government morgue, the same morgue that provided up to 90 per cent of the hospital’s corneas in the past.

Dr Hubrecht Brody, ophthalmologist and founding member of the Eye Bank Foundation of South Africa, says doctors understand the reasons behind the legislation, but regard the lumping together of all tissue banks as ill-advised.

“We made several representations to Dr Tshabalala-Msimang, but we never received an answer,” Brody says. The lack of donor corneas has other, far-reaching consequences.

“We’re forced to allow young ophthalmologists to complete their studies without having done a single corneal transplant,” König says.

“Our young doctors are simply leaving the country – not because of crime but because they’re not given the opportunity to complete their training properly. This damages South Africa’s medical image overseas.”

To get the corneas they so desperately need, patients can import them from the United States at a cost of R22 000 each. Some medical aids will pay for imported corneas, others won’t.

This means a transplant which should be a relatively inexpensive procedure becomes an exorbitantly expensive undertaking. The result: the rich have their sight restored while the poor remain blind.

To complicate matters the best corneas are kept for use in America, where about 80 000 corneal transplants are performed annually. Sharon van Mechelen was fortunate enough to experience the miracle of a corneal transplant.

But before the operation, the invisible organism had damaged her eyes to such an extent that she couldn’t look after her children. Her weight dropped to 46 kg and she was in so much pain she had to be hospitalised and treated with intravenous painkillers.

Yet, only a few days after the transplant she could see her son blow out the two candles on his birthday cake. “Thanks to a cornea donation, I got my life back,” she says. “That’s why all the members of my family have now registered as donors.”

Brody agrees that becoming a donor is the ultimate gift. “By donating your corneas you can give someone a new lease on life,” he says.

Two years ago, Brody’s brother-in-law Bernard Kloppers was shot dead during a crime-related incident at his Vanderbijl Park home. “My sister Marie is comforted by the fact that two blind people can see because she donated Bernard’s corneas,” Brody says.

“But it’s still a huge frustration. We could do so much. The resources are available but the will of the government is lacking,” he says.

“That’s why we appeal to all South Africans to consider the seriousness of the situation. Perhaps you or a relative will need new corneas one day . . . ‘new’ eyes and the ability to see are of the greatest gifts you can give your fellow man.”

Contact Dr Brody on 021-948-5650

Blind no more

Thomas Strauss (21), a Bloemfontein student, has had serious bilateral keratoconus (a thinning and distortion of the cornea in both eyes) since he was a child.

As a teenager he had to wear two sets of contact lenses – hard and soft – and carried a little black bag of lenses, eye drops, painkillers and antibiotics wherever he went.

Eventually the lenses tore his corneas and two years ago he was led into an eye specialist’s surgery, blind. Today, following two corneal transplants, he’s completed his first year at university and is independent.

“I used to be a prisoner of my eyes,” Thomas says. “Now it feels as if someone’s set me free.”

Three years ago Jeannine Nestel (39), a single parent of two daughters, was diagnosed with the corneal disease keratoconus. A corneal transplant was her only hope.

“The transplant was fantastic – I got my life back,” Jeannine says.

But the procedure wasn’t an immediate success. The stitches came loose several times and during the past two years Jeanine has had three painful procedures to reattach the cornea.

“When I remember how dependent I was – I always had to ask someone to lead me or take me somewhere – I know the operation was worthwhile.”

Today Jeannine is a financial consultant who travels the length and breadth of the Western Cape to visit clients.

Become a donor

If you don’t have HIV or hepatitis B, call the Eye Bank Foundation of South Africa on 021-447-5151 and sign up now. The staff at eye banks know exactly how traumatic it is for families when a loved one dies.

That’s why you should tell your family if you want to become a cornea donor – it’ll make things easier for them when you pass away.

Corneal transplant. Cape Eye Hospital, 9 September 2008.