Dan Roberts. International Low Vision Support Group NEWSLETTER. This Month. In This Issue. 1: This Month 2-5: News

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In This Issue 1: This Month 2-5: News Eye & Body Complete from Biosyntrx Extra Strength AREDS-2 Multisupplement Call for information 800-688-6815 The ILVSG is sponsored by MD Foundation www.eyesight.

1 In This Issue 1: This Month 2-5: News Eye & Body Complete from Biosyntrx Extra Strength AREDS-2 Multisupplement Call for information The ILVSG is sponsored by MD Foundation ILVSG TeleSupport is sponsored by Biosyntrx, Inc. and Genentech International Low Vision Support Group NEWSLETTER Volume 11, Issue 4 - April This Month We have two speakers this month, both of whom address aspects of age-related macular degeneration (AMD) in specially-edited recordings from the Visions 2015 conference in Baltimore. The program is in two parts, beginning with Dr. Emily Chew, Deputy Director of the Division of Epidemiology and Clinical Applications at the National Eye Institute. Dr. Chew will take the first 20 minutes to review the Age-Related Eye Disease Study (AREDS) and also give an overview of AMD. The final 17 minutes of the program will feature Dr. Mark Kleinman, Assistant Professor of Ophthalmology at the University of Kentucky. Dr. Kleinman will describe ongoing clinical trials testing drugs for both wet and dry macular degeneration. It has been a while since we have pinpointed AMD in our monthly sessions, but, since the majority of our ILVSG participants are affected by that condition, I hope you will agree that this will be time well-spent. Dan Roberts 1

2 Similarity of Anti-VEGF Drugs Confirmed For DME Treatment ILVSG Newsletter Vol Vol 11, 11, Issue 4 A rigorous clinical trial has found that individuals with diabetic macular edema (DME), whose visual acuity is 20/50 or worse, gained more improvement with Eylea than with Avastin. Aside from that, no significant difference was found among the three anti-vegf drugs (including Lucentis) in subjects with 20/32 or 20/40 vision at the start of treatment. By two years, 41 percent of participants in the Eylea group received laser treatment to treat their macular edema, compared with 64 percent of participants in the Avastin group and 52 percent in the Lucentis group. This... confirms that Eylea, Avastin, and Lucentis are all effective treatments for diabetic macular edema, said NEI Director Paul A. Sieving, M.D., Ph.D. Eye care providers and patients can have confidence in all three drugs. John A. Wells, M.D., lead author of the study, said the results showed little advantage of choosing Eylea or Lucentis over Avastin when a patient s loss of visual acuity from macular edema is mild. The clinical trial was conducted by the Diabetic Retinopathy Clinical Research Network, with funding from the National Eye Institute. Experimental Gene Therapies Still Raising Hopes Wills Eye Hospital has announced that it has treated the first RESCUE trial patient in the United States enrolled in an FDAapproved gene therapy vision research study. A product called GS010 (GenSight Biologics), can be injected right into the eye and, in a sense, re-wire or lower the patient s risk for getting the disease. The patient has Leber s Hereditary Optic Neuropathy (LHON), a rare, genetic eye disease, passed on by the mother and affecting 35,000 patients worldwide. 2

3 Patients with vision related disorders are considered ideal candidates for gene therapy, because the product can be injected directly into the eye. The first experimental treatment for LHON, also known as Leber s congenital amaurosis (LCA), was injection of the gene labeled rpe65 in The procedure showed some success by researchers from the University of Pennsylvania School of Medicine and University College London. In that study, one patient improved from an acuity of 20/2000 to 20/710. Three others showed no acuity improvement, but did improve in other areas of visual function. If successful, research such as this will open doors for future patients with other eye diseases for which no cures presently exist. Sleeping Too Much Will Not Cause Blindness Recent research has found an association between longer sleep duration and advanced dry age-related macular degeneration (damd), also known as geographic atrophy. This has been misconstrued by at least one media outlet to mean that too much sleep might actually cause the disease. That is absolutely untrue. According to the researchers, Sleeping too much or too little has been associated with adverse health outcomes including total mortality, cardiovascular disease, Type 2 diabetes, and hypertension. The purpose of the study was to further explore the relationship of sleep and disease states by looking at people who are affected by damd. It was not intended to identify sleep as a risk factor for developing blindness. Of 1,003 subjects in the study, the group with geographic atrophy was found to sleep longer than those without AMD. Not only will a good night s sleep not cause blindness, a good deal of evidence supports sleep as a positive benefit for visually impaired people. It allows the retina to complete the visual cycle, restores physical endurance, and relieves the stresses often associated with 3

4 losing vision. Of course, sleeping too much can also be a sign of depression, so common sense must prevail. As I have said before, an associative effect is not necessarily a causal effect. We need to maintain a healthy amount of skepticism and not believe everything we read. New Alliance to Provide Support for People Living With Eye Health Concerns The Patient Access Network (PAN) Foundation and Prevent Blindness today announced that they are launching a new alliance to offer holistic support for people living with retinal vein occlusion, macular disease and uveitis. The alliance will enable the organizations to leverage the PAN Foundation s eye health financial assistance programs and patient resources of Prevent Blindness to ensure patients have access to the services and support they need to best manage their disease. At PAN, we aim to ensure that underinsured patients can access the treatments they need, and that doesn t stop at just helping with their deductibles and co-pays, said PAN Foundation President and CEO Dan Klein. In partnering with Prevent Blindness, we can offer these patients more by connecting them with programs, educational resources and a supportive community that understands their needs. Both retinal vein occlusion and uveitis can lead to slightly reduced vision or severe vision loss. According to the National Institutes of Health, age-related macular degeneration is a leading cause of vision loss in the United States. Patients who qualify for the PAN Foundation s eye health programs must reside and receive treatment in the United States, must have health insurance and the medication for which they seek assistance must be covered by their insurance and treat the disease directly. See page 5 for specific program information. 4

*Patients must have Medicare insurance. Patients, or advocates and caregivers applying on their behalf, can apply for assistance using the PAN Foundation s online patient portal (www.panapply.

5 *Patients must have Medicare insurance. Patients, or advocates and caregivers applying on their behalf, can apply for assistance using the PAN Foundation s online patient portal ( or by calling PANF (7263), 9 a.m. to 5 p.m. Eastern Standard Time, Monday through Friday. To learn more about PAN s more than 50 disease-specific programs, visit panfoundation.org. -- NEXT MONTH -- "The Future of Driving With Visual Impairment" David Seftel, MD, interviews Philip C Hessburg, MD, about hope for the future of visually impaired drivers. Relaxation of driving regulations and the advent of autonomous vehicles are discussed. 5

Dan Roberts. International Low Vision Support Group NEWSLETTER. This Month. In This Issue. 1: This Month 2-5: News

Dan Roberts. International Low Vision Support Group NEWSLETTER. This Month. In This Issue. 1: This Month 2-5: News In This Issue 1: This Month 2-5: News Eye & Body Complete from Biosyntrx Extra Strength Protection Call for information 800-688-6815 The ILVSG is sponsored by MD Foundation www.eyesight.org 888-633-3937