EUROPEAN NETWORK of FIBROMYALGIA ASSOCIATIONS

From the News Desk of Jeanne Hambleton

PRESS RELEASE -28.01.2009

 

The European Medicines Agency (EMEA) are to  have a consultation with a delegation from the European Network of Fibromyalgia Associations (ENFA) in an attempt to understand the need for medical treatments for fibromyalgia in Europe.

Brussels – Following an invitation by the EMEA, the European Network of Fibromyalgia Associations (ENFA) has agreed to attend a consultation meeting with EMEA, where ENFA representatives will share their knowledge and experiences related to the disease of Fibromyalgia that some 14 million Europeans are suffering from.  One of the biggest challenges that the patients have been facing is the lack of officially recognized medical treatment options in the European Union whereas there are three drugs in the United States of America approved by the Food and Drug Administration: Cymbalta from Eli Lilly, Lyrica from Pfizer and recently authorised Savella from Forest & Cypress.

 

The European Declaration 69/2008 on Fibromyalgia that has been recently adopted by the European Parliament, symbolizing the awareness raised around Fibromyalgia, calls for actions on specific issues from European Institutions to improve healthcare surrounding the disease, e.g. investment in research and provision of better diagnosis and treatment.  In addition, the European Health Commissioner Ms. Vassiliou’s remarks (E-6262/08EN) on the treatment of Fibromyalgia demonstrates encouraging willingness of the European Commission to address various concerns laid out in the Declaration on Fibromyalgia.

“We hope that this new drive on Fibromyalgia awareness will bring the end to the impasse of medical treatment for Fibromyalgia patients in the EU”, said Mr. Robert Boelhouwer, President of ENFA. 

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. It is estimated that 14 million people in Europe suffer from fibromyalgia and the condition is more prevalent with women (87%).  Fibromyalgia imposes large economic burdens on society as well as on affected individuals. The debilitating symptoms often result in lost work days, lost income and disability payments. Due to lack of awareness, on average patients in Europe see 3-4 physicians and take multiple medications over the course of several years before they receive a diagnosis of Fibromyalgia.

Mr. Boelhouwer said, “Increasing awareness of Fibromyalgia among healthcare professionals and patients will bring enormous benefits to patients, healthcare providers and the society in general by managing the burden of the disease.” he continues, “Having this in mind, ENFA welcomes the proactive role that both the European Parliament and the European Commission have taken up in raising the awareness of Fibromyalgia.”

 

 

Contact:  European Network of Fibromyalgia Associations (ENFA)

Mr. Robert Boelhouwer President of ENFA

contact@enfa-europe.eu  - www.enfa-europe.eu

 About ENFA

ENFA is a network of patient association and support groups working in close consultation with the national association in the relevant country. Our joint missions are to conquer the myths and misunderstandings around Fibromyalgia. The network will help collectively push forward the boundaries which currently exist in understanding, experiencing and treatment of Fibromyalgia. Our main goal is to see fibromyalgia receiving the recognition it deserves across Europe as an illness in its own right.

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http://www.europarl.europa.eu/QP-WEB/application/home.do?language=EN

 

 

Gene therapy promising for rheumatoid arthritis

From the News Desk of Jeanne Hambleton 

           Monday, February 9, 2009

NEW YORK (Reuters) –- Researchers have successfully used gene therapy to substantially reduce joint pain in two patients with rheumatoid arthritis (RA).    These data “provide the first documented, clinical evidence that local gene therapy can provide symptomatic relief in human RA,” Dr. Christopher H. Evans and co-investigators report in the February issue of Human Gene Therapy.  RA develops when, for unknown reasons, the body’s immune system turns against itself, causing joints to become swollen and inflamed. If the disease is inadequately controlled, the tissues of the joint are eventually destroyed. There is no cure for RA, which is estimated to affect more than 2 million individuals in the U.S. alone.  “RA is an extremely painful condition affecting multiple joints throughout the body. Arthritis is a good target for (gene therapy) because the joint is a closed space into which we can inject genes,” Evans, from Harvard Medical School in Boston, noted in a written statement.  Prior studies have shown that the molecule interleukin-1 plays a key role in the breakdown of cartilage in patients with arthritis. In the current study, tissue was removed from the knuckle joints of two patients with severe RA and a harmless virus was inserted into the tissue cells, in order to serve as a “vector” to shuttle a gene that blocks action of the interleukin-1 protein to the joint. After being placed in culture to grow and replicate, the cells were injected back into the afflicted joints.  One patient who received gene therapy in two joints experienced an 85 percent reduction in pain in one joint within 1 day, and both joints were pain-free from 1 week onward. “Remarkably,” the researchers report, joints receiving the therapy were protected from flares that occurred during the study period.  The second patient also responded to gene therapy, with a 70 percent reduction in pain between weeks 2 and 3.  “Existing treatments for rheumatoid arthritis are costly and need to be administered regularly,” said Evans, adding that in addition to risk of side effects, not all patients respond well. “This paper provides us with the first real evidence that painful symptoms can indeed be lessened through gene therapy.”  Ongoing work will focus on the use of gene therapy for the treatment of osteoarthritis, by far the most common type of arthritis, as well as rheumatoid arthritis, Evans noted.

Courtesy of  The Tehran Times  (http://www.tehrantimes.com/index_View.asp?code=188744)   Info@tehrantimes.com