ARSBH: creating equality across borders
Developing parity of treatment in Europe for Spina Bifida and HydrocephalusDeveloping parity of treatment in Europe for Spina Bifida and Hydrocephalus
Attitudes to healthcare vary among member countries of the EU and this is often reflected in their approach to the concept and care of rare diseases. Access to treatment and social services is not the same for everyone but for rare disease patients there is an even greater disparity. Not only do rare disease patients and their families fight a daily battle to achieve equality within the healthcare system where they live, they also have to deal with inequalities of treatment and understanding of rare diseases across the EU.
Adriana Tontsch became aware of the plight of children in Romania with Spina Bifida and Hydrocephalus in 2004. Adriana was born in Romania but fled to Germany 25 years ago where she now lives with her husband and 3 children. In 2005 she founded the organisation ARSBH (Asociata Romina Spina bifida si Hidrocefalie). “Everything started, in 2003, with Maria Savu,” says Adriana. As a baby Maria had a head circumference of 49 cms, and was diagnosed with Hydrocephalus.
Hydrocephalus is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles of the brain, causing increased intercranial pressure and progressive enlargement of the head. Symptoms may include convulsions, headaches, vomiting, sleepiness, or coma and can result in life threatening brain stem compression.
Hydrocephalus often originates in difficult cases of Spina Bifida, a birth defect that causes an incomplete closure of the embryonic neural tubes. Vertebrae overlying the spinal cord do not fully form; remain unfused and open, allowing a portion of the spinal cord to protrude through the opening.
In Romania children suffering from these conditions and their associated symptoms are frequently referred to as ‘worthless vegetables’. Parents are often told that successful treatment does not exist. Maria’s parents were informed that neurosurgical intervention was pointless. When the circumference of Maria’s head reached 71cms her parents tried to get treatment for her in Vienna but the €12,000 cost was beyond their means. Adriana brought Maria’s story to public attention and raised funds for the operation which was successfully carried out, when Maria was a year old, at the Donau-Hospital in Vienna.
“In Romania most children die as a result of these conditions through lack of treatment. If the children survive they are hidden in orphanages or at home,” explains Adriana, “whereas children in other EU countries get the necessary treatment, a relatively standard procedure, directly upon diagnosis.”
ARSBH, working in conjunction with HWKR e.V., gathers data on children and adults with Spina Bifida and Hydrocephalus, buys the necessary drainage systems and valves for surgery, plans the date of operations with participating neurosurgeons in Romania, advises parents, and stays in contact with children who have been operated on, particularly those in orphanages.
Everything is paid for by donations principally from Germany. Adriana says, “we were lucky to be featured on an Austrian TV show in 2006. We raised enough money to supply many children with operations. Since the financial crisis, donations have decreased. We aim to draw attention to the suffering of the Romanian children but with the country’s poor reputation in the EU, it can be difficult to get people’s support.”
ARSBH’s greatest challenges come from ignorance and lack of interest. ‘The government won’t help us fight the issues of Spina Bifida and Hydrocephalus. Doctors lack knowledge about these conditions. The Romanian health system does not have the facilities for therapy and rehabilitation and there is a general lack of care in hospitals and orphanages. In spite of the huge and successful efforts of the Romanian National Alliance for Rare Diseases (RONARD) disabled people are largely ignored and improving life for the handicapped is not a priority,’ explains Adriana.
In many state hospitals in Romania, in stark contrast to the rest of the EU, doctors and surgeons are personally responsible for the equipment they use. When an instrument malfunctions they have to find the funds themselves to have it repaired or replaced. This applies equally to medical supplies such as syringes, bandages, needles etc. Those who can afford to, for instance by having a second job in a private clinic, sometimes pay for these essentials out of their own salary. An important part of ARSBH’s remit is to supply this equipment. To date they have donated the shunt systems and other medical items necessary to perform more than 650 operations. They have also financed medical training for six Romanian neurosurgeons, focusing on procedures addressing Spina Bifida, in conjunction with University Johannes Gutenberg Neurosurgery Clinic, Germany.
ARSBH’s next major project is the creation of a National Centre for Treatment and Recovery of Children with Spina Bifida and Hydrocephalus. They own the land, the architectural plans are complete but, for the moment, they do not have the funds necessary for construction.
“Our goal is that everyone in Romania with Spina Bifida or Hydrocephalus will be cured and able to lead an independent life. These conditions must be recognized as treatable, as they are in Germany, by doctors and families” states Adriana. “We have achieved a great deal but there is more to be done to bring Romania’s level of treatment and care up to the level of many other EU members.”
This article was first published in the February 2011 issue of the EURORDIS newsletter
Author: Irene Palko
Photo credits: © Adriana Tontsch