|
|
|
New and Notable from
AMD Alliance International
The Global Voice of Low Vision |
|
|
The real financial cost of vision loss in Canada is estimated to be $27.5 billion for 2007, according to a just released report from CNIB. And that is just one AMD Alliance International (AMDAI) member country, with a relatively small population of 34 million. AMDAI members represent some 25 countries around the world, and there is no doubt that total global cost of vision loss is staggering. However, we know that timely access to appropriate treatments and supports (such as low vision rehabilitation) is both cost effective for governments, and essential to quality of life and independence for people with macular disease. AMDAI and its members are committed to patient advocacy to secure these basic rights, and to conducting the ongoing research necessary to support our fight for sight. Congratulations and thanks to each of us for our contribution to the cause, and warmest wishes for continued success to all of us - wherever we may live!
David Herman, Chairman | |
| Patients stitched up in bureaucratic patchwork? |
|
For more than two years now, German citizens living with macular degeneration have been sent on a bureaucratic run-around trying to get treatment for macular disease. Patients are exhausted, confused, and in some cases angry. Pro Retina Deutschland e.V and DBSV, the patient advocacy and low vision rehabilitation organizations in Germany, report that patients are presenting to clinics believing they will be able -- as is their legal right according to German law -- to obtain authenticated medications. Instead they are finding out that their place of residence, their health insurance, and above all their power and ability to deal with bureaucratic obstacles and complicated regulations decide how they are treated.
"Why is this happening?" you might reasonably ask. German patient advocates have been asking the same question of their policy makers. On April 1, 2009 the medical treatment of macular degeneration should have been added to the service catalogue of the statutory health insurances. Despite promises, and tremendous efforts from many supportive government officials, this has not happened. The reason for the delay appears to be an unresolved dispute between health insurance associations, German government and doctors about payment of intravitreal injection fees. The result reported by German patients is a national patchwork of contracts and arrangements -- and a bureacractic labyrinth to negotiate.
"...we demand of all parties concerned - health insurances, doctors and the pharmaceutical industry - to intensify efforts to find a sustainable compromise, that enables the patients access to proven therapy at a reasonable cost, " explain Gretel Schmitz-Moormann and Ute Palm, patient spokespersons.
|
|
| New Videos from AMDAI Help Patients Realize They are Not Alone |
   
Living with macular disease can be challenging for patients and family members. AMD Alliance International knows how important it is for patients and loved ones to hear directly from other people who share similar experiences to help them understand they are not alone. AMDAI created a series of new videos from patients who share their experiences and discuss both their challenges and triumphs over macular disease.
AMDAI also recently produced a short video on the work of Adam Hahn, the award-winning artist who, in memory of his grandmother who was affected by macular disease, set out on a unique project to increase awareness about the serious condition and its difficult challenges. Adam created paintings depicting people with the disease as seen through their own eyes.
|
|
| ARVO recognizes Christina Fasser of Retina International |
AMD Alliance International Board Member and President of Retina International, Christina Fasser will receive a Special Recognition Award from the Association for Research in Vision and Ophthalmology (ARVO). The award is presented periodically to honor outstanding service to ARVO and/or the vision research community. Ms. Fasser will receive the award in honor of her major contributions in the fight to cure retinal degenerative diseases, acting as spokesperson for the needs of patients and information conduit between patients, investigators and funding agencies.The award will be presented at the 2010 ARVO Annual Meeting, May 2 -6, 2010, in Fort Lauderdale, Florida.
"There is no one more deserving of this honor than Christina," said AMDAI Chairman Dave Herman. "For many years she has worked tirelessly on behalf of patients facing the challenges of vision loss. We congratulate Christina on this well-earned recognition."
|
|
| Connecting with colleagues |
|
 AMDAI Chief Executive Wanda Hamilton recently attended the Mediterranean Society of Ophthalmology Annual meeting, where she presented the AMDAI research on Quality of Life of Europeans with Macular Disease, participated in a Low Vision services panel, and received a special achievement award from the Society, presented by the Tunisian Minister of Health. Attendance at the meeting gave us the opportunity to see at first hand the prominence of the Nadi-Al-Bassar clinic in the region, and the essential work in low vision services and prevention of blindness being done there under the leadership of Dr. Ahmed Trabelsi. Our colleague in Italy, Dr. Bruno Lumbroso, was instrumental in founding the Mediterranean Society, and in promoting low vision services in the region. A hearty round of applause to Dr. Trabelsi and Dr. Lumbroso for their tireless efforts on behalf of so many patients who have benefited from their tremendous leadership and expertise. We look forward to continued collaboration.
 Allie Laban-Baker, VP Communications for AMDAI, seen here with U.S. Congressman Pete Sessions, attended the 40th Anniversary celebration of the National Eye Institute in Washington, hosted by the Alliance for Eye and Vision Research. AMDAI congratulated Dr. Paul Sieving for the NEI's 40 years of scientific excellence, stating "The National Eye Institute is a true leader in the field of vision research. Thanks to your efforts, patients with macular disease now have hope. We look forward to our continued collaboration. Happy Anniversary and keep up the good work! " |
| The event came one day after the U.S. House of Representatives unanimously passed a resolution that acknowledged the NEI's 40th anniversary and supported designation of 2010-2020 as the "Decade of Vision."
AMDAI looks forward to future collaborations with NEI, AEVR and lead American members of AMDAI, such as Lighthouse and Prevent Blindness America, who ensure macular disease remains a priority for policy makers in the US.
|
| Plans Underway for AMD Week |
|
Don't delay--AMD Week is just around the corner! September 20-26, 2009 marks AMD Week all around the world and AMD Alliance International has been hard at work planning a campaign to maximize public outreach efforts. In keeping with the latest communications techniques available today, AMDAI, in collaboration with member organizations, is developing a viral campaign--an attention grabbing email blast that uses pre-existing member lists or social networks to produce increased awareness about macular disease. The viral campaign will be simple to distribute and can be personalized for use by each member organization interested in participating. Other plans include media outreach about macular disease and the need for regular eye exams. Join our global effort! |
| For more information, or to participate, contact Communications Committee Chair, Tamara Petrou at tpetrou@ ffb.ca. or Allie Laban-Baker at allie.labanbaker@AMDalliance.org. |
| Annual General Meeting Set for Vienna |
Vienna is best known for Mozart, Sacher Torte, and its beautiful Blue Danube, but this historical city is also the location of the next AMD Alliance International Annual General Meeting and Meeting of the Board of Directors.
The meetings will be held on April 15-18, 2010 and will bring together AMDAI board members to collaborate on the most critical issues facing patients today. But we need your help! We have openings on the Program Committee, and invite applicants. Participating Committee members will assist in the development of the meeting's theme, sessions and important topics to be addressed. By serving on the committee, you will not only help shape the outcome of the meeting, but the future as well. To participate, or for more information, contact AMDAI Project Coordinator Isabel Mueller at info@AMDalliance.org. |
|
|
| Did You Know? |
|
|
| AMDAI exists as the global network to provide hope and help for people living with macular disease. We know that each and every day you too are hard at work making a positive change for people with macular disease. Our hope is that our resources can be freely exchanged and knowledge broadly shared.
Please feel free to reprint any AMDAI report, information or stories from our newsletter "News You Can Use" or our website, www.amdalliance.org. Glad to be your global resource! | |
|
|
|
AMD Alliance International
Bringing Hope and Help to People Living with AMD
AMD Alliance International is the only international organization in the world dedicated exclusively to promoting awareness, treatment and research into macular degeneration, the leading cause of vision loss in the developed world. With 67 organizational members in 25 countries, we are a prominent membership organization comprised of the worlds' leading vision, seniors and research organizations.
|
|
|
|
|
|
|
