Dan Roberts. International Low Vision Support Group NEWSLETTER. This Month. In This Issue. 1: This Month 2-6: News

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1 In This Issue 1: This Month 2-6: News Eye & Body Complete from Biosyntrx Extra Strength Protection 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 3 - March This Month In her paper, Effect of Vision Loss on Communication and Social Skills Dr. Lea Hyvärinen, writes that many problems in communication and social skills are due to misunderstandings among sighted individuals unaccustomed to contact with vision impaired individuals in gatherings and public places. Dr. Hyvärinen emphasizes the need for better education of the sighted public and inclusion of training in social participation in the standard vision rehabilitation program. Along those lines, we welcome back Peter Torpey and Nancy Goodman Torpey discussing "The Sociology of Disability" with Tom Behler, a blind college professor of sociology. Professor Behler provides unique insight into how people with disabilities are treated by society. He will discuss some of his studies in the field and how awareness of disabilities has evolved over the past 50 years. I think we can all relate to this topic at some level, and I hope the program will generate some good discussion among your group members this month. Dan Roberts 1

2 Large Study Shows 1 in 5 People With Vision Loss Experience Hallucinations ILVSG Newsletter A new study conducted by the Canadian National Institute for the Blind (CNIB) has found that one in five Canadians with vision loss who were surveyed experience visual hallucinations, known as Charles Bonnet Syndrome (CBS). Widely considered quite rare among the medical community, the study shows that, in fact, CBS is a common condition among people with serious vision loss, characterized by temporary visual hallucinations. CBS is not a mental illness, nor is it a symptom of dementia or any other disease. Rather, it is a condition specifically related to vision loss. Lack of awareness of this condition can cause confusion and concern among those experiencing and diagnosing it. While it is not yet known exactly what causes CBS, researchers are beginning to believe it is related to an attempt by the brain to fill in information that would normally be obtained from the eyes. CBS hallucinations affect only sight, not hearing, smell or touch. The hallucinations may seem real (like seeing cows in a field when the field is actually empty) or surreal (like seeing dragons). Most frequently, people will see patterns or simple shapes, but there are many accounts of more complex hallucinations, such as little men holding umbrellas at the end of the bed, or women in red dresses sweeping the floor The CNIB study also showed that: There was no higher probability of hallucinations between any of the three major eye diseases (age-related macular degeneration, diabetic retinopathy and glaucoma). Respondents who experienced greater levels of vision loss had higher chances of experiencing hallucinations. Although vision loss occurs more frequently in older people, the risk of developing CBS does not increase as people age. 2

3 Future Sustained Drug Delivery Methods for Choroidal Neovascularization ILVSG Newsletter During the American Academy of Ophthalmology s Retina Subspecialty Day in 2015, Peter K. Kaiser, MD, described six alternative methods being looked at for delivery of anti-vegf drugs into the retinas of individuals experiencing choroidal neovascularization (CNV). Periodic intraocular injections are currently the only procedure for halting damaging blood vessel growth and leakage. Injections are expensive, time-consuming, and burdensome on the patients, so scientists are developing better ways to treat such blinding diseases as neovascular (wet) macular degeneration, diabetic macular edema, diabetic retinopathy, and myopic degeneration. A BIODEGRADABLE POLYMER puts the drug into a polymer matrix by way of a biodegradable polymer that slowly releases the compound. In the past, said Dr. Kaiser, emulsion technology was used to release particles, [but] the problem... is that the particles are variable in size, [and] size determines the release characteristics. Improved polymer technology may make this a more effective method in the future. MULTILAYER LIPOSOMES (phospholipids) are tiny bubbles (vesicles) in the body that are made of the same material as a cell membrane. Drugs can be stored in them. Then, as Dr. Kaiser explained, as the lipid layer breaks down, the drug is released. By adjusting the phospholipid formulation, you can adjust release characteristics and duration of [the release]. A MICROPUMP can slowly release drugs into the eye as often as every hour over a period of 4 to 9 months. It is attached unseen to the side exterior of the eyeball, and it delivers drugs to the interior of the eyeball through a tube permanently inserted through the white covering of the eye. The reservoir is filled in the clinic and can be programmed wirelessly. Similarly, Genentech is conducting trials with Lucentis, wherein a refillable port-delivery system releases the drug slowly over 3 to 4 months. 3

4 ILVSG Newsletter GENE THERAPY may be able to provide unlimited release of medications. An adenoviral-based vector containing the gene for human pigment epithelium-derived factor (PEDF) has shown evidence of being able to stop disease progression when injected directly into the eyes of patients with neovascular age-related macular degeneration. ENCAPSULATED CELL TECHNOLOGY (ECT) involves a semipermeable cylinder that has altered retinal pigment epithelial cells. A drug called ciliary neurotrophic factor (CNTF) is produced and released by a device into the vitreous of the patient s eyes. The ECT acts like a miniature factory for production and distribution of the drug. THE CHOROID itself can act as a depot for medication. The choroid is the layer of the eye behind the retina containing blood vessels that nourish the inner cell layers. A microcatheter or microneedle can be used to inject drugs into the suprachoroidal space. Intravitreal injections and sustained-release solid implants, said Dr Kaiser, are the most common techniques used at the present time. Advances will continue to occur, along with the development of new agents. Time will tell which of these delivery methods will prove to be most effective, but the day of the needle may be soon passing. New Combination Therapy Treats Retinal Damage in Diabetics Aerpio Therapeutics, Inc. has announced promising results from their TIME-2 study of AKB-9778 as a treatment for diabetic retinopathy (DR). AKB-9778 alone and in combination with Lucentis (ranibizumab) improved underlying retinopathy by 10.0%, and 11.4% compared to 8.8% of patients receiving Lucentis alone. 4

5 ILVSG Newsletter Pravin U. Dugel, M.D., reported that Diabetic retinopathy is a rapidly growing global epidemic, occurring in approximately onethird of all diabetic patients. In greater than 50% of patients with DR, bilateral disease poses a threat to patient vision, and I am particularly excited by the opportunity represented by AKB-9778 to treat bilateral disease with a systemic approach. Prevent Blindness encourages diabetic patients to have annual dilated eye exams, which are generally covered by commercial insurance and Medicare. Aerpio is initially focusing development of AKB-9778 in diabetic eye disease, with potential for development in other retinal disorders, including wet AMD. AVA-101 May Extend Time Between Wet AMD Treatments In 2014, Avalanche Biotechnologies postulated that a single injection of a new gene therapy treatment could possibly stop blood vessel growth and leakage in the wet form of Age-Related Macular Degeneration (AMD) for several years. A single injection of a drug called AVA-101 (aka sflt-1) could create a kind of biofactory that continuously secretes a therapeutic protein over an extended period. This would avoid the need for frequent injections, as is now the practice. Based on preclinical studies, the therapeutic effect was hoped to last at least 18 months and as long as several years. Since that time, trials through phase IIa at the Centre for Ophthalmology and Visual Science (University of Western Australia) have demonstrated that raav.sflt-1 has been safe and well tolerated for a period of three years. The drug has been used in combination with Lucentis (anti-vegf) injections as needed. Using gene therapy in this way is different than usual, in that, rather than targeting a specific genetic disease, it is being used to treat the more complex wet form of AMD. 5

6 ILVSG Newsletter High Dose Statins May Be Effective In Treating Dry AMD Researchers at Massachusetts Eye and Ear/Harvard Medical School and the University of Crete have found that high doses of statins (cholesterol-lowering medications) can effectively reduce the number of soft drusen deposits in retinas of people with dry age-related macular degeneration (damd). The findings from their phase I/II clinical trial were published in the recent issue of EBioMedicine. Their hope is that this research will provide a foundation for an effective means of preventing progression to the advanced stages of a disease which currently has no effective treatment. Drusen in the retina are similar to cholesterol deposits in the blood vessels, which has led scientists to look at cholesterollowering drugs for AMD patients. Previous studies, however, have not shown a significant effect of cholesterol medications on drusen. The possible answer, according to these researchers, is to increase the dosages beyond the normal amount. Twenty-three patients with dry AMD marked by soft lipid deposits in the outer retina were prescribed a high dose (80mg) of atorvastatin, the generic name of the statin marketed as Lipitor and several generic equivalents. Of the 23 patients, 10 experienced an elimination of the deposits under the retina and mild improvement in visual acuity. As the next step for this line of research, the investigators plan to expand to a larger prospective multicenter trial to further investigate the efficacy of the treatment in a larger sample of patients with dry AMD. -- NEXT MONTH -- "Update and Overview of Macular Degeneration" Presented by Dr. Emily Chew (National Eye Institute) Dr. Mark Kleinman (University of Kentucky) 6

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 AREDS-2 Multisupplement Call for information 800-688-6815 The ILVSG is sponsored by MD Foundation www.eyesight.org