This month we interviewed Fundación Cardioinfantil working hard to bring heart surgery to Bolivia. We hope this lengthy interview will bring interest and further connections and cooperation with each other. Fundación Cardioinfantil are a prime example of the need for our Global Heart Network: they do not have access to all information about stakeholders that do a similar job and have no access to contact them and even institutions that might support them. They are hoping that GHN will help bring them more visibility and discuss and find solutions to the needs and resources in Bolivia. They are currently looking for stakeholders working in the field of reduction of incidence of rheumatic heart disease in LMICs and share experiences in proving cardiac care in LMICs. Please do not hesitate to contact Camila or connect directly with GHN for more information.
Please Introduce yourself:
Our NGO name is Fundación Cardioinfantil In year 2003 doctors Alexandra and Franz Freudenthal -both Bolivian- returned to La Paz after concluding their medical specialization in pediatric cardiology in Germany. After two years of giving diagnosis to cardiac children, they realized only 12% of the patients got the treatment (surgery or therapeutical cardiac catheterization) they needed due to lack of resources. There is a single cardiac centre in Bolivia with over 30 years of experience within the field. The price of a heart surgery is unreachable for most of the cardiac children. This dramatic situation drove them to found the NGO based in Bonn, Germany to fundraise for lifesaving heart surgeries that take place in Bolivia. Locally, the Fundación Cardioinfantil was created in order to identify the children, and get them the help they need.
The mission of our NGO is to help low income patients and patients from rural areas of our country. In order to reach them we work with a wide network of pediatricians and doctors in the main hospitals of the urban cone of La Paz, city. Rural patients are regularly referred to these hospitals from health facilities in their villages. In this way we can reach an important quantity of cardiac children of the department of La Paz. In order to reach rural patients from other parts of the country we travel once a year to another region of the country and visit a rural health facility in order to offer diagnosis and access to treatment for cardiac patients. Rural Bolivia is like another world. Urban Bolivia has some modern facilities (very often overcrowded health services), but there patients are more likely to find specialists and get care or support. Rural Bolivia faces a lack of doctors, very often a limited number of doctors are responsible of providing care to two to three towns. Not only human resources are limited but also infrastructure and the means to perform prover diagnosis.The biggest challenge we face is dealing with rising prices from the hospital, where our patients get their treatment. This conditions our support since the only way to fund surgeries is through fundraising. One of the most outstanding patients’ story is from Rolando C. He was 13 when he was refered to a hospital of the urban cone back in 2007. His diagnosis: tetralogy of Fallot. He lived with his family in northern rural La Paz, rain forest. He was so affected by the disease that he could not walk anymore to school, but education was so important to him that his father carried him daily to school. Rolandos’s family recurred to alternativel medical methods to “fix his heart”. Rolando visited some rainforest shamans before visiting the doctor in the city. The doctor at the hospital called our specialists. The surgery was scheduled for the next day. He was transported to another city for the treatment. The surgery was sucessfull. Rolando ended up graduating from high school, going to college to become an Auditor and running his own family business. He provides a work place to most of his family and is healthy.
Our hope is that one day every single cardiac child in Bolivia will have access to treatment regardless of their income. We hope young doctors will tend to work to help patients in need and most important to do the best they can with they have where they are. We always had young doctors in our team. They are mostly trained for a period of time and keep on with the especialization in the field of peadiatric cardiology or others related.
We are inspired by the beauty of our country. Bolivia is an amazing country with high snowed mountains. The Andes take our breath away daily. We also have a never ending jungle, valleys, salt flats, interesting cultural
expressions, many ethnic groups, glorious food and very kind people.
Poverty is complex and a multidimensional phenomenon, which has to be solved from many dimensions. We think investment in health is one of the most cost-effective approaches to fight poverty. You are not only working to provide care to those in need, you are giving them a life-chance, so they can choose the path they want to follow to become who ever they want. Of course health policies go hand in hand with proper education policies but we strongly believe that good health policies will help Bolivians to get out of poverty.
We are also inspired by the work of many people in other parts of the world that wants to improve the quality of life of cardiac children. There are so many inspiring stories from all around the world: in India, in Argentina, in Colombia, in the US, in Germany, in Austria, in Spain. All these experiences inspire us and give us the strength to reach our goal.
What do you feel are the biggest barriers to increasing access to cardiac care in your area?
Analyzing our health care system we conclude there barriers in all three levels. Some barriers at the primary level are the lack of tools to suspect from congenital heart diseases prior and after birth. Distance is also a barrier, especially for rural patients. Cardiac children are often refered to urban hospitals, but for some families costs associated to travel are a burden. Most families decline the trip and children stay in their rural communities without any treatment. There is an empowerment barrier at the secondary level. Very often peadiatricians think they cannot provide proper cardiac care and do not help the patient in searching for a solution to their problem. Patients need to get an answer. This can change with the empowerment of nurses that have most contact to patients.
At the tertiary level there is a lack of resources to get high-tech equipment and all the medication needed to offer proper cardiac care.
What is the single biggest need your organization has in achieving its goals and mission?
The single biggest need in achieving our goal and mission is the fact that cardiac children deserve a better quality of life like every other human of the planet. Having access to cardiac care should not depend on income or the place you where born in.
We are running a Project at the Children’s Hospital in La Paz to build the first pediatric cardiovascular department within the public health system of the country. The project consists in supporting capacity development in the field of peadiatric cardiology and intensive care unit in order to improve the quality of health care at the Hospital. Medical and nursery staff are being trained in the Children’s Hospital “Juan P. Garrahan” in Buenos Aires, so that fresh- trained team can support young patients with heart pathologies during the surgery and after the procedure. The project will run until June 2016. The staff at the hospital has not yet started with basic heart surgery procedures but first surgeries are planned for January 2016.
Additionally we are training doctors, peadiatricians and nurses that work in hospitals of the urban cone and in rural health facilities of La Paz, Potosí, Chuquisaca and Oruro. Our goal is that cardiac children are identified soon enough and referred to the Children’s Hospital of La Paz so that they can get treatment.