"This way you'll be able to spend more time looking after your daughter." That was the most painful part of the justification given by a company's Human Resources director to a father who was dismissed because he had asked for a few days off to donate part of his liver to his sick child. The little girl's life depended on her father being genetically compatible.
"I asked for a few days off and to take some of my holiday allowance so I could go to Madrid for the operation," says the man, who is a member of the Spanish Association for Children with Liver Conditions and Transplants (HEPA). One week before the operation was due to be carried out he was sacked, with the excuse given above.
This was by no means the only case of its type. In Spain only five hospitals are authorised to carry out transplant operations on children. Another father from HEPA had to travel to the Spanish capital for tests to see if he was compatible with his son, and he brought back the medical certificates for his employers.
"They said these had been voluntary tests and that I wasn't ill, so they wouldn't accept them. They said the only solution would be to apply for unpaid leave," he says. At least in this case he didn't actually lose his job. The HEPA association has decided not to reveal these people's names in case they suffer further retribution.
HEPA has started a petition on www.change.org to collect signatures to demand changes in the law so that living donors are given more protection. About 263,000 people have signed so far.
Spain is the model and most effective example in the world in terms of organ transplants. This success, of which the medical profession is justifiably proud, has resulted in people being more aware of the importance of organ donation and has made Spain the leading country in this field. The National Transplant Organisation (ONT) started in 1989 and by last year more than 100,000 transplants had been carried out in this country.
For decades, operations of this type involved removing healthy organs from corpses, but the waiting lists for transplants and, especially, medical advances in recent years, have resulted in live donations: healthy people who donate an organ or part of one to help someone else who is ill.
Science, ahead of the law
The legal aspect especially affects kidney or liver transplants, as the organs come from live donors. The laws have not been adapted to deal with this situation, and do not include any protection for healthy workers who voluntarily undergo operations of this type.
For many affected families, news of the most recent cases has been the final straw.
"About 60 per cent of liver donors are experiencing serious problems of this type, and between eight and ten per cent have lost their jobs," says the president of HEPA, Luis Torres.
The families complain that companies became less understanding with the onset of the economic crisis. "The support psychologists talk to us about the doubts that donors have and how the number of volunteers has dropped because people are afraid of what will happen. They don't want to be heroes, they just want to be treated fairly," explains Luis.
Every year more than 400 operations are carried out from live donors, and more than 90 per cent of these are kidney donations. The director general of the ALCER national federation, Juan Carlos Julián, says, "Nobody from our organisation has lost their job, but some people are concerned that it might happen or they postpone donating because they are worried that they risk being sacked."
In fact, a profile study shows that most people who offer to donate a kidney are civil servants, and therefore at less risk of losing their jobs.
There is absolute consensus about this among families and transplant professionals. This week sees the retirement of Rafael Matesanz, who has been the director of the ONT since it was founded nearly 30 years ago. This matter is of great concern to him, and he has fighting for a solution since 2012.
"Because it is something which involves the employment and health authorities, it has become complicated, but it is difficult for anyone to say "no" to donating in situations like this," he says.
On 8 March, World Kidney Day, he met with the Parliamentary Health Committee and believes that his argument was well received. Also, as he points out, "The change in the law would only affect about 400 people a year."
There are economic arguments to support the demands. "When people have had a transplant, they have much less time off sick, and it is always cheaper than the 50,000 euros it can cost to give a patient dialysis for a year," says Juan Carlos Julián.
The families and the National Transplant Organisation want living donors to be given the same legal status as pregnant women. "Their jobs need to be protected and companies' prejudices need to be overcome," insists Luis Torres.