Our organization had a great growth last year. Since the year 2000, we have a new center in front of one of the big pediatric hospitals of the city. We received 200 new families in 2001. We are well known and the pediatric oncology community sees us as a valuable resource. Never like now, poverty, hunger, violence and insecurity are spread in our country. I would like to talk about what we do about this situation, as the resources are scarce and we must pay attention to every possibility.
The objective of this presentation is to show the different ways we found to cope with this crisis. We think it could be interesting for parents groups in developing countries.
I will talk about the way we manage the donations in kind we receive and, on the other hand, how we manage the explosion of people that come willingly to our institution wanting to help others and how we coordinate their intentions or expectations with our mission.

The crisis in our country had affected the care of the children with cancer in different ways:

Most of the families that come to us, almost 80%, are unemployed for a long time, often more than a year. Many times, they don't even have the money to reach the hospital or to buy any food. We used to have a "free pass", given to the child during treatment. Now, because of political misunderstandings between "sectarian powers" we lost this benefit, making transportation a big problem. Most of the patients live far from the hospital, or have to come from other states. They lack the money for food, so the nutrition level of some of these children is very poor. The governments of the other states of our country are broke, so they don't let the families come to Buenos Aires to get the specialized attention they need, even if it was necessary. The Bank of Medicines, a state agency that has to give chemotherapy and other medicines free, very often has nothing. Some medicines, that are imported, are so expensive that people cannot buy them at all. We import the Procarbazine and distribute it all over the country free. At this moment, it seems that nobody is responsible of the situation, even knowing that our law says that "free health services must be available at every public hospital … " Many hospitals, most of them from the interior, have no medical supplies at all for those families, which have medical insurance, the situation is not much better. Although, we have a PMO, medical obligatory program, insurance companies try not to pay. So, for every patient, we have to contact a voluntary lawyer or public prosecutor, to make them pay.

Because of the crisis, our donors also changed their way of giving:

Individuals want to make gifts "in kind", rather than giving money. It could be for making it friendlier, or because they want to be sure that the patient receives the goods: they ask us what we need, and then they buy it. Maybe they don't want "just" to give money. Many families, friends of our Foundation left the country, and they gave us the house ware. Since December, the solidarity has a great growth. Many groups raised money to buy things for people in need: people from the same building, work, schoolmates, friends, religious community, grand parents, and patients from other institutions work together. The shops and industries are in a very bad situation: they used to give us money but now they only offer some of their services or products. Some of them broke down and closed their doors and ask us to get whatever could be useful for us. The "corralito" made people not to have cash to give in contributions. Even the State gives us thousands of things from customs since the price of the dollar changed. 

First of all, I need to explain to you what "Trueque" is in Argentina.

People sell their things and receive a check, called "crédito", it's almost like peso, our money. With that check, they can buy other things at the same place, or in other similar "nodo". It can't be used, for example, to pay for public transport. People used to change things from their house, but at this moment they have no more things to change. There are a lot of articles in newspapers about trueque. One of them said that almost 6.000.000 Argentineans live from trueque, and since last summer, a lot of people go there, looking for food. We decided to start helping in that way because many of the families told us their experience. We brought all the information together, parents can read it in our house, or they can share information between them, through a folder where everybody writes about their own experience. 
We established a deposit, it is open twice a week, near our Foundation. There is one responsible person and two volunteers. We prepare a bag, worth around 120 créditos. Parents can look for it every 10 days. At this moment, almost 140 families are doing Treque, with our help. Things in the bags are quite beautiful, and we also try to give people things according to their need, abilities or skills. Parents bring the things they do back to show us.

There are also additional benefits for these families, when we help in this way:
   o It's not just a gift. They can make it worth more, depending on their own ability to exchange. 
   o It's an alternative job. Taking into account the lack of time during treatment, this is an activity that can be done whenever possible, near each house. They feel free of doing it, just when it is possible. 
   o It brings also some new entertainment for the child, he or she sees his/her parents doing something that makes them feel better. 
   o They always receive very useful things, very easy to sell. As many times these goods are new, they can change it for the cash they need, e.g. for transportation. 
   o They also sell the things they do at our creative workshops. 

How do we manage the cooperation of the people?

FOOD

o Daily, we serve some of the meals to these families, for those that are more in need, we also give a bag with basic foods. 
o a volunteer started teaching Soya cooking 
o when going to the supermarket some women buy at the same time food for our foundation
o neighbors collect food and bring it to our house 
o factories give us the products that are near the date of expiration.

DRUGS
We have a set of frequently requested medicines that we try to have in advance . Due to the situation we try no to buy them, just get it from other sources.
We work on parent's awareness, talking about the responsibility of giving back the medicines when it is possible. 
On the other side, we use the media to sensitize the general public about giving drugs they might have at home (we call it recycling ).
Some of our volunteers work on asking the laboratories for drugs for a specific patient
As a new way of helping, a group, lead by a mother, is collecting newspapers, selling them for recycling and using the money to buy medicines or medical supplies needed at the hospitals.

HOSPITALS 

Some people approached us to help at the pediatric hospital. We tried to organize them, we created a special fund with the money they raised, and kept it available for the help they want to give. They learn of our experience. Usually, they get the information about who could make a contribution and we make the formal presentation and administrate the funds.
o At the moment we have two groups of this kind: 
1. A Group that Supports Research in Pediatric Oncology: They are parents of survivors, children treated at the Hospital Garrahan, all of them are out of treatment. They try to raise money, get other parents involved, organize meetings or events and work with the media. 
2. A Group that Supports Hospital Posadas Pediatric Oncology Department. Two mothers, whose daughter and son died, lead it. Recently they got the money to re-build part of the ward area and they are a better link with the families of that hospital, whitch is far from our house. These mothers come to us looking for the things family and hospital may need. Parents don't have to travel so much to get our services.

This year, we realized that urgent needs worried our families and 

We have other programs and objectives. We are not proud of having to do these kind of activities, so we also make great efforts to keep doing our best in other areas like recreational activities, academic area, work shops, and parents support. For example, we have been invited to join the "Traveling Team" formed by the Oncology Committee of the Pediatric Society of Argentina. This is an interdisciplinary group that visits all centers in Argentina dealing with pediatric cancer with the aim to asses the situation, improve standards of care and create a national network to regulate, standardize and coordinate oncology practice in every region. At this moment, we have links with all the institutions that treat childhood cancer.
For those Spanish speaking nations or patients, I want to inform you about our translation of the SIOP Guidelines of the Psychosocial Committee into Spanish, which is available through the web page of the ICCCPO. 

Edith Grynszpancholc
Fundación Natalí Dafne Flexer.  Buenos Aires. Argentina.
contact: edith@fundacionflexer.org  Web site:  www.fundacionflexer.org