1) SCI Issues Introduced to European Parliament

2) European Parliament Vice President Miroslav Ouzký Supports SCI Project

3) The Icelandic delegation’s proposal on spinal cord injury is approved by the Nordic Council Welfare Committee.

1) Issues of Spinal Cord Injury Introduced to European Parliament

Adapted and translated from an article appearing in the February 8, 2006 Moggi by Ólafur Thóroddsen.

At the January meeting of the Council of Europe (COE), Strasbourg, France, the Icelandic delegation hosted a meeting in the Council’s Palace of Europe to introduce the joint effort of Icelandic Health Authorities and the World Health Organization (WHO) for spinal cord injury (SCI).

Many European parliamentarians, officials, and diplomats attended the meeting, which featured the documentary You Will Never Walk Again. The film calls for integrating the diverse knowledge of SCI professionals throughout the world and information on the treatment of people who have suffered SCI. An international data base is being created, which will gather information on SCI therapies for both professionals and the general public.

At the meeting, Birgir Armannsson, the Icelandic delegation’s chairman, summarized the project and its status. He thanked Audur Gudjonsdottir O.R. nurse for her unselfish 10-year commitment to this area and being an advocate on behalf of those with SCI. Because many people have sustained this devastating disorder, Birgir stated that it was important to collect information on better treatments. Audur indicated that advances in treating SCI have progressed slowly over the past half century, and believes the time had come to turn this situation around and rally people for progress.

The meeting was called on the initiative of Audur Gudjonsdottir and the Icelandic delegation and held in cooperation with the Icelandic Health Department, the central office of the Parliament of Iceland, and representatives of the Icelandic Foreign Service. The meeting’s Icelandic delegation included parliamentarians Birgir Armannsson, Birkir Jon Jonsson, and Margret Frimannsdottir.

The COE’s mission is to be a guardian of the objectives of the member nations for human rights and democracy, and to support economic and social progress. The COE meets four times a year and includes representatives from 46 member nations.

Photo (Click on Thumbnail). From left: Birgir Armannsson MP, chairman, COE Icelandic delegation; Audur Gudjonsdottir, O.R. nurse; Margret Frimannsdottir MP; Hordur H. Bjarnason, ambassador; and Birkir Jon Jonsson MP.

2)Important Not to Close Your Eyes to Anything

Bergur Ebbi Benediktsson, Morgunbladid

Miroslav Ouzký, a Czech rehabilitation doctor, is a member and one of 14 vice presidents of the European Parliament.  He is visiting Iceland to learn about the country’s project for spinal cord injury (SCI), including its educational database, operating under the sponsorship of Icelandic Health Authorities and the World Health Organization (WHO).

“I think this database is a very sound project because the most seminal thing in this regard is to expand dialogue on the treatment of spinal cord injury,” says Miroslav.

Audur Gudjonsdottir, OR Nurse, has been pivotal in database establishment, as well as a long-time advocate for additional SCI research. This reporter met the Czech parliamentarian at Audur´s home with his wife, Zora Ouiska, a child-neurology specialist, and Lara Margret Ragnarsdottir, an ex-Icelandic parliament member, who has also been an ongoing SCI advocate.

The Project Introduced to the European Union

Earlier this year, Audur´s database was introduced to the Council of Europe in Strasbourg, which had been in the possession of a report on spinal cord injury composed by Miroslav. In the ensuing Council of Europe discussions, all 46 member nations passed a resolution stating their will to further support research on spinal cord injury. The database thus enjoys Council of Europe support, and now the time has come to acquaint the European Union with this project.

“As a member of the European parliament, I am a member of the committee on public health to which I have introduced my report on spinal cord injury, and the proposals based thereon that have already been passed by the Council of Europe,” says Miroslav and explains that by this, he will bring in sharper focus to the 25 member nations of the European Union what they already have passed in the Council of Europe.

“By this I want to bolster up discussions within the EU on spinal cord injury and consequently that funding will be increased in this facility and eventually that EU will prepare legislation on these matters.  My report states among other things that it is vital to seek new methods in the treatment of spinal cord injury. This is the same as is emphasized in the database which embodies all known methods of treatments of spinal cord injury without any prejudices.”

Research is Investment

“If I mention unorthodox medicine such as applied by Dr. Zhang to my Czech colleagues they contend that this is simply some Chinese talisman. It is, however, important not to close your eyes to anything,” says Miroslav and points out that Western methods of treatment are indeed in many cases highly effective but on the other hand that research and treatments in this department have almost remained the same for the last fifty years.

“In my report I call this the blind circle because it is sometimes as if people run blindly in circles without looking for their final goal. It is also possible to view this through the lenses of economics. It must be a financial vantage point to invest in research that will enable paralyzed people to get on their feet. It is expensive to take care of those who are unable to do so themselves,” says Miroslav, who adds that people have almost ceased to regard research on spinal cord injury as an option of progress.

The Situation is Like an Epidemic

“I often compare this to the bird flu. Imagine all the money that is being spent on researching the flu, a disease that has lead to the death of 120 people. People put all at stake to stop the flu spreading out but we have a malady like spinal cord injury where nobody is longer interesting in doing new research. We want to change this attitude,” says Miroslav, who adds the comparison between the bird flu and spinal cord injury is not totally irrelevant since the cases of spinal cord injury are constantly on the rise, and thus it can be compared to an epidemic.

“People suffer spinal cord injury in all kinds of accidents but the accidents are not necessarily growing in numbers. Medical science is constantly in progress so that people now live longer after these accidents than before,” says Miroslav, outlining why there are more and more people with spinal cord injury.

Asked if there is also in the wings an option to decrease accidents causing spinal cord injury, Miroslav consents to that “Yes, that is highly possible. In Australia for instance an effort was implemented to prevent accidents causing spinal cord injury. An example of this is when people dive into too shallow swimming pools, and this effort rendered good results, “says Miroslav, who articulates his worries about the many accidents in sports leading to spinal cord injury.

“Several kinds of peripheral sports are gaining in popularity, but these sports often contain high risks of causing spinal cord injuries. People also can suffer these accidents in many kinds of activities. In the United States, many suffer accidents playing football - horse riding can be very dangerous as people know in Christopher Reeve´s instance - and in Central Europe, one constantly hears about persons breaking their necks falling from walnut trees,” says Miroslav relating that the picking of walnuts is quite common in his country and the neighboring countries.

Those with Spinal Cord Injury Need to be More Visible

Finally, Miroslav stresses the importance of not forgetting those who have sustained a spinal cord injury. He says that immediately after the accident everything is done to keep people alive, but then we tend to forget that they live for decades, often restricted to a wheelchair.

“People with spinal cord injury are not visible enough, and therefore we are not attentive enough to these matters. In my country we have, however, a forceful spokesman for those with spinal cord injury. It is a man who was one of the leaders of the flannel revolution in 1989. He was a young actor at the time and was badly hurt in an automobile accident after having spoken at many exhortatory rallies,” says Miroslav.

A Lot of Work Ahead

“I do not expect a miracle, which would not be a responsible attitude. We are now standing at the beginning of a certain road, and ahead there is huge work in research on spinal cord injury,” says Miroslav, who rejoices at the efforts of Audur Gudjonsdottir and the database that has been established in Iceland.

“My work at the European Union will among other things focus on increased access to the database, to publicize it, and possibly to facilitate financial support,” says Miroslav at the end of our talk. 

3) The Icelandic delegation’s proposal on spinal cord injury is approved by the Nordic Council Welfare Committee. (January 2011)

On Wednesday, the Nordic Council Welfare Committee approved the Icelandic delegation’s proposal for co-ordinated information on spinal cord injuries in the Nordic region.

The proposal recommends the appointment of a committee of scientists and physicians to collect information and prepare an overview of Nordic and other research and treatment of spinal cord injury, in the form a report, and to prepare proposals for improvements in the research and treatment of spinal cord injuries.

Approval was also given to a proposal to investigate the extent to which people with spinal cord injuries are active in the employment market and to embark on the creation of a Nordic quality file on spinal cord injuries.

Approximately 1000 Nordic citizens suffer spinal cord injuries every year. Progress in the treatment of spinal cord injuries has been much slower in recent decades than in other fields of medicine, such as in cancer, cardiovascular and ophthalmological treatment.

As a result of the Welfare Committee’s approval, the proposal will now be submitted for discussion at the annual Session of the Nordic Council in Copenhagen in November.

The Nordic Council was formed in 1952. The Council has 87 elected members from Denmark, Finland, Iceland, Norway and Sweden as well as from the three autonomous territories: the Faroe Islands, Greenland and Åland.

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