Time for Leadership in Hungary

January 14, 2011 | by

As it takes over the rotating presidency of the Council of the European Union for the first six months of 2011, one would have thought that the Hungarian government would be bending over backwards to show the world how far it has come since the dark days of the previous regime; that it would be making extra efforts to demonstrate how it embraces fundamental EU values since it entered the Union during the 2004 enlargement.  But this does not seem to be the case. At least not where people with disabilities are concerned.

This week, a broad group of local and international civil society organizations representing people with disabilities criticized the government for failing to respect the need to have a real debate about the terms for EU Structural Funds tenders. The government planned a meeting to discuss the tenders, but gave groups less than 24 hours notice of the meeting—making it impossible for organizations to prepare for the meeting, never mind to attend it. By curtailing any substantive debate, the government failed to fulfill its obligations to utilize European taxpayer money in the most responsible way (a translated letter from the groups to the Ministry of National Resources and the National Development Agency, which are responsible for managing the expenditure of EU Structural Funds, is available online). The fact that Hungarian law (Act CXXXI of 2010) requires social dialogue during the legislative process did not seem to matter.

The problem here is not only that that the Hungarian government still does not take consultation with civil society seriously—it is also that it intends to spend Structural Funds on the construction of new residential institutions for people with disabilities rather than invest that finding in the development of community-based services. We are talking about enormous amounts of money: Hungary is to spend 13 billion HUF (about 47 million Euros) for this purpose between 2011 and 2013. That kind of money could be used to develop the alternative infrastructure nationwide, finally ending the archaic practice of locking people with disabilities up in large, closed institutions and throwing away they keys.

Given that Hungary was among the first countries in the world to sign and ratify the UN Convention on the Rights of People with Disabilities (CRPD) that clearly sets out the right to live in the community with appropriate support, the government’s plan to build new institutions is baffling at best. At worst, its insistence on maintaining the status quo by bypassing social debate on critical issues will lead to the wrong  decisions, and will end in an enormous waste of resources.

We already know that the Hungarian government spent 1 million Euros on renovating large institutions between 2008 to 2010, and not a single penny on deinstitutionalization. Given that Hungary is in a leading position in the EU for the first half of this year, it should show real leadership. It could do that by elaborating regulations on the use of Structural Funds that respect the fundamental right of people with disabilities to live in the community by investing the resources in alternative services that respect their human rights. The Bulgarian government recently adopted an action plan for deinstitutionalization that uses Structural Funds to develop the alternative infrastructure, showing that the right thing can be done if there is political will.

The bright spot in this story is that civil society groups are standing together on this and will act as the conscience that the Hungarian government seems to lack.

bluebird bio Earns $4.2 Million from French Muscular Dystrophy Association for Continued Development of Gene Therapy for Beta- Thalassemia and Sickle Cell Anemia

Wireless News March 21, 2011

Wireless News 03-21-2011 bluebird bio Earns $4.2 Million from French Muscular Dystrophy Association for Continued Development of Gene Therapy for Beta- Thalassemia and Sickle Cell Anemia Type: News

bluebird bio, a developer of gene therapies for severe genetic disorders, announced that it has entered into an agreement with the French Muscular Dystrophy Association (AFM), a French non-profit entity, whereby the company will receive an initial amount of approximately $1.4 million in cash to support the development of LentiGlobin, the company's development-stage program for the treatment of beta-thalassemia and sickle cell anemia. here muscular dystrophy association

As part of the research agreement, bluebird bio has the option to draw upon an additional amount of up to $2.8 million in credit toward the manufacturing of cGMP clinical trial material at Genethon. In December 2010, bluebird bio entered into an agreement with Genethon designed to enable substantial advances in the existing manufacturing process of lentiviral vectors for the benefit of both partners.

bluebird bio's LentiGlobin introduces a fully functional human beta-globin gene, under the control of the beta-globin promoter and locus control regions, into the patient's own hematopoietic stem cells. bluebird bio is currently conducting a Phase 1/2 trial examining the feasibility, safety and efficacy of LentiGlobin in the treatment of beta-thalassemia and sickle cell anemia. Based on clinical data published in the September 2010 issue of Nature, LentiGlobin therapy has shown the potential to eliminate the need for monthly blood transfusions in patients with beta-thalassemia, without the risk of graft-versus-host disease.

"This funding from the AFM will not only support our ongoing thalassemia and sickle cell clinical trial, but also signifies the beginning of a collaboration with the AFM," said Nick Leschly, president and CEO of bluebird bio. "We are grateful for the AFM's commitment to the advancement of a treatment that has the potential to greatly improve the lives of patients." website muscular dystrophy association

Beta-thalassemia is an inherited blood disorder that is named for defects in production of the beta-globin chain of hemoglobin, the protein in red blood cells that carries oxygen. Approximately 60,000 children are diagnosed with the disease each year throughout the world. Patients typically require monthly supportive red blood cell transfusions to treat their severe anemia for life. Sickle cell anemia is characterized by clotting of improperly shaped red blood cells, which leads to a variety of serious health problems including chronic pain and high risk for stroke. Sickle cell anemia affects millions throughout the world, including approximately 95,000 people in the United States.

((Comments on this story may be sent to newsdesk@closeupmedia.com))

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2 Comments to “Time for Leadership in Hungary”

  1. Now that our "leadership" has ended, I would be interested in a summary. I do not think that leadership has meaning in this case at all. It had only consequence for Hungarians in a way that our goverment had not that much time for us, but now it is getting worse...

  2. On August 25th, 2011 at 2:51 pm, Robert Stewart said:

    The Government of this country,Hungary, is so interested in acting on it's own agenda it will never make time for those,through no fault of their own or their families, find themselves at the mercy of the crazy bureaucracy and backward thinking politicians who only look after themselves. Shame on them.

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Judith Klein

Judith E. Klein, JD, has been the Director of the Mental Health Initiative since 2000, and has worked for the Open Society Foundations on mental disability since 1995.

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