In late November the MEP Interest Group on Brain, Mind and Pain in partnership with the European Academy of Neurology and the European Pain Federation arranged a meeting in Brussel. One of the main themes of the meeting was the fundamental right to healthcare and medical treatment.
Lieve Wierinck MEP started the session by refering to the EU’s Charter of Fundamental Rights of the European Union. She stated: ‘’everyone has the right of access to preventive healthcare and the right to benefit from medical treatment.’’ And yet large health inequalities persist in Europe; many patients do not have access to effective treatment for neurological and pain disorders. New and better treatments are urgently needed.
The same inequity of access to treatment is a common problem in Huntington’s disease (HD). Astri Arnesen, the President of the European Huntington Association, was present at the meeting. She told about the disease, stigmas and the need for greater awareness and more patient associations.
HD-COPE
One contribution to make a greater impact in HD research and treatment is the coalition HD-COPE. The Huntington’s Disease Coalition for Patient Engagement (HD-COPE) aims to be the voice of people directly affected by Huntington’s: to speak their wishes and needs.
When the groundbreaking results of the Huntingtin Lowering Trial, IONIS-HTTRx, was announced in December, the European Huntington Association and the American Huntington Association travelled to Basel to meet Roche Pharmaceuticals – the company who is further developing the trial.
The European Huntington Association, American Huntington Association and the Canadian Association make up the foundation of HD-COPE. February the 4th Roche will meet representatives from HD-COPE in London to discuss further trials and possible treatment.
Written by Maiken Arnesen