Since the National Human Organ and Tissues Donation Register was set up in December 2016, 21,600 people registered their wish – with only 12 making it clear they do not want to donate their organs after their death. While registration numbers were strong in the first year, they dipped the following year – and are now back on the increase. Claudia Calleja reports.
It was a Friday evening, after a long and busy week. Alan Azzopardi was in the shower when his mobile rang – he ignored it thinking it might be a work-related call.
Five seconds later the same number called again. Whoever it was, it seemed urgent – he picked up. They were calling from hospital. A cornea – the front transparent part of the eye – was available for transplanting, but he’d have to decide now.
This was not his first transplant.
He had undergone his first cornea transplant a few years earlier, but, while the operation was successful, a fungal infection attacked the same eye and blurred his regained vision.
The two years that followed were painful. Alan did not want to go through it again.
Yet, it only took Alan, 41, five minutes to conclude that better vision was worth the risk – so he called back and told the hospital he’d be there the following morning for tests ahead of surgery.
Lost vision and internal conflicts
Alan’s eye problems began when he was 34. He started suffering from blurred vision in his right eye. Over the years, he visited various specialists, even travelling abroad, but the situation got worse and the cause remained undiagnosed. He eventually lost his sight from the eye, only seeing white as though looking through frosted glass. He then started experiencing painful redness and inflammation.
An artist and designer by profession, Alan’s vision was an essential tool for his trade. He did not want to give up on a possible solution.
“Without good vision, even from one eye, you lose the basics... with one eye I was coping but I lost depth. I’d pour a glass of water and it would end up on the table, or I’d constantly walk into door jambs,” he says, adding that, to top it all up, he was in constant pain.
After three years, his ophthalmologist told him he should sign up for a cornea transplant. The decision was not easy for Alan.
“I imagined that, since I was young, I’d take the cornea of someone young like me. But this is not the case – in fact my first transplant was from a woman over 50,” he says.
“You have mixed feelings: because this is something you want, but someone has to die for you to get it. For example, every time I’d hear of a fatal accident involving someone young, I’d wonder if they’d call me. You are selfish, but hopeful.”
Becoming a donor
The day Alan signed up to the transplant waiting list was the day he decided to become a donor.
“I remember that, for some reason, I thought that to receive an organ you’d need to be on the donor’s register. They told me I didn’t have to be. Then I thought: Hang on, why am I not a donor? I signed up. It was an eye opener.
“Many don’t become organ donors because they think of it as a will – something you do when you’re older. People think: I won’t die for now. Many tell me they plan to sign up as donors ‘one day’. But what are we waiting for? At 16 you can already be a donor.”
A year after signing up for the transplant, he received a phone call from the hospital telling him there was a cornea available.
The transplant was successful. But three weeks later he contracted a fungal infection that impaired his vision once again. It took two years for his eye to heal before he was eligible for the second transplant.
“It doesn’t affect me that I have someone else’s cornea. What affects me is the decision they took. The moment he decided to be an organ donor – that decision really affected my life,” he says.
Taking control over your own body
This year, 7,200 people signed up to the National Organ Donation Register – already almost double those who registered throughout 2018, when 4,125 signed up.
The figures are encouraging and are mainly due to the large number of outreach events organised by the Healthcare Standards Directorate, explains director Patricia Galea.
“You can register your wish – whether you want your organs to be donated or not after death – to shift the burden off your next of kin… we encourage everyone to register their wish either way. It’s about having control over yourself – even after death,” she said.
Before organ donor registration came into force, a voluntary organisation had taken it upon itself to compile a register. Over some 30 years, the NGO got between 25,000 and 30,000 people registered. But that list was wiped out with the introduction of the Data Protection Act.
Before, those registered would be given an organ donor card – which was the only way to know if a person was a donor.
When the law came into force in 2016, the first national register started being compiled from scratch. It contains confidential data, only accessible to transplant coordinators, about those who register their wish. There is no longer the need for a donor card.
Anyone over 16 can register and people can change their mind at any point and register again.
“It’s important that whoever has the organ donor card registers again,” Ms Galea said.
National Organ Donation Register
To register your wish on the National Organ Donation Register, simply fill in a form.
You can complete the online form available on www.organdonation.gov.mt, or you can download a form from the site, collect it from a health centre, call 2595 3324 or send an email to organdonation. health@gov.mt to receive a form by post.
Then send the completed form to: The National Human Organ and Tissues Donation Register, Department of Health Regulation, Healthcare Standards Directorate, Health Services Building, St Luke’s Square, Guardamangia PTA 1010.