Awareness key to reversing Costa Rican organ donor shortage

On her 46th birthday, Rosibel Arrieta received an unusual gift – a new liver. It was a gift she had spent months fighting for.

When Arrieta was first diagnosed with a cancerous tumor on her liver at the public Hospital México in San José, she was told that nothing could be done to help her. She needed a transplant and Costa Rica did not even have a waiting list to write her name on.

But she didn’t give up. Arrieta went to the hospital, asked for her file, photocopied every single page in it, put everything in a briefcase and took it to other hospitals in the capital, both public and private.

In 2006, Arrieta was one of many people who not only were ill and needed a transplant, but who also suffered from a deficient health care system in which they were denied the opportunity to receive proper treatment. Since then, the system has gone through substantial changes. Still, 30 patients, including children, are waiting to receive liver transplants. Others need kidney, heart, lung, bone marrow, skin or cornea transplants.

Every year, Costa Rica dedicates a week to reflect upon the many needs and challenges the country has in terms of organ donations and transplants. To mark this year’s National Organ and Tissue Donor week, the Social Security System (Caja) is launching a new organ donation program. Thanks to her determination to survive, Arrieta is once again able to participate in events highlighting the importance of donating organs and tissue.

Arrieta received her liver transplant in 2007 after knocking on every Costa Rican hospital’s door and insisting with every doctor who she came across. Dennis Landaverde, a doctor at Hospital San Juan, was the first person to give her hope. He put her in contact with the transplant unit at the National Children’s Hospital, where adults could receive transplants at the time.

“The first time I went to the transplant unit I was scared. I didn’t even understand what a transplant really was,” Arrieta said. Today she works hard to educate people on the reality of a transplant. “Some people may think, like I use to, that somebody else has to die in order for you to get a transplant, which is not true. A potential donor will die whether the organs are transplanted or not,” she said. For Arrieta, educating people on the importance of being a donor is important.

Arrieta and other liver transplant patients founded the Asociación Nueva Vida (New Life Association) to promote organ donation and help transplant patients and their families. The association has been working closely with the Costa Rican Doctors and Surgeons Association on a campaign titled “Yo decidí donar” (I decided to donate). The campaign is timely, as the Caja looks to change its system for transplants nationwide.

Earlier this year, the Caja sent physician Marvin Agüero to Spain to learn how the Spanish transplant system is so successful. Now that Agüero is back in Costa Rica, he has been working with Caja officials to design and implement a new program here.

The new transplant scheme will work on several levels, starting with the establishment of a generalized donor protocol that will be used in all Costa Rican hospitals that have an intensive care unit.

Another ongoing problem is that only three Costa Rican hospitals have staff to counsel families of a potential donor and explain to them how being a donor can help other patients. The program will attempt to create in each hospital a “donation coordinating team” that will talk to the families of patients when decision-making is crucial.

“In countries like Argentina and Uruguay, having people who specialize in talking to families of potential donors has helped raise the donation index from three or four to 15 or 16 donors for every million residents,” Agüero said. “In Costa Rica, we have very good doctors and appropriate surgical technology, but we’re lacking the raw material for transplants. We don’t have enough donor organs.”

In Spain, the country that is inspiring the new Costa Rican scheme, the donation index is 34 organs for one million residents. However, the Caja is looking to reach numbers similar to those in Argentina or Uruguay. The program is also looking to strengthen the system with a single transplant waiting list, since the three hospitals that work on organ transplants – Calderón Guardia, Hospital México and the National Children’s Hospital – each have their own waiting lists.

Marielos Arias, president of the Children’s Liver Transplant Association, said Costa Rica needs to develop more awareness of organ donation. Arias’ own son suffered from a kidney illness and needed a transplant. Although a donor was eventually found, it was too late and Arias’ son didn’t survive.

“We need to make sure that people understand that many organs in perfect shape are going to waste because we don’t communicate to our families our willingness to be a donor,” Arias said.

“Even if Costa Ricans indicate on their driver’s licenses whether or not they want to be a potential organ donor, in the end only family members will allow that to happen,” Arias said.

The Caja doesn’t keep records of people who have indicated on their licenses that they are willing to be donors.