VISION ACCESS, Volume 10, Number 3, 2003, Copyright 2003 by the Council of Citizens with Low Vision International

     The Washington, DC area is a wonderful place to live for a veteran low vision advocate like me.  Low vision advocacy could be a full-time job if I didn't already have a job as a professional in the field of government relations.  Your board members and other leaders all do their best to keep up with what's happening in legislation, regulations, and other areas of public policy affecting research, services, technology and public education about low vision.  As you will see in the pages of this issue of Vision Access, our Editor, Joyce Kleiber, has sifted information to glean what might be of special interest to our readers.  As this issue of Vision Access was heading for publication, Congress acted in two areas—Medicare coverage for vision rehabilitation and talking signs. CCLVI has been an advocate for these causes.

Here is a description of these actions.

Congress has, for the first time ever, named vision rehabilitation professionals in the Medicare statute. The Medicare bill just passed by Congress appropriates $2 million to study Medicare coverage for vision rehabilitation services. This study, to be completed by January 1, 2005, is to produce recommendations for funding vision rehabilitation services through Medicare. Now orientation and mobility specialists, rehabilitation teachers, and low vision therapists are recognized as valuable to Medicare beneficiaries. And permanent Medicare coverage for these services now seems to be an attainable goal.

This study will also address two obstacles to Medicare coverage for vision rehabilitation—the lack of state licensure for vision rehabilitation professionals and the small number of vision rehabilitation professionals practicing nationwide.

A Senate Omnibus Appropriations bill, which is still pending, complements this landmark Medicare legislation.
The Omnibus bill conference report establishes a 5-year demonstration project to begin July 1, 2004. This project will lead to the provision of national Medicare coverage for vision rehabilitation services.

The Omnibus bill also requires the federal Center for Medicare and Medicaid Services (CMS) to develop policy recommendations by January 2005. These will allow vision rehabilitation professionals to provide services in patients’ homes and environs. In completing its assignment, CMS is to consult with the National Vision Rehabilitation Cooperative and other interested organizations.

While the 5-year demonstration project is in effect, advocates will seek Congressional approval to establish these services on a permanent basis.

Lorraine Lidoff, coordinator of the National Vision Rehabilitation Cooperative, urges the entire field of vision rehabilitation to strategize and take action now to meet the challenges involved in assuring successful outcomes for these groundbreaking initiatives.

In another arena important to people with low vision, a coalition is forming to seek a $30 million appropriation from Congress to fund a huge demonstration project in the metropolitan Washington DC area. This project requires that “talking signs” be installed to assist vision impaired travelers at all bus stops, on all busses, on subway trains, in subway stations, at the Amtrak train station and at both Washington Dulles and Reagan National airports.

     I live here and I can not read signs because of my low vision, and I’m left wondering where all these public transit vehicles are going every single day.  So installing talking signs sounds like a wonderful idea to me.

     The effectiveness and versatility of talking signs as a way finding and orientation system for people with visual and reading disabilities has been researched and demonstrated through numerous studies, tests and installations for fully twenty years.  Installations in the United States, Japan, Norway and Canada are providing reliable, accessible location information.

     Advocates believe that orientation to public transportation is a civil right and that this demonstration project will serve to establish the first truly accessible city for people with visual and reading disabilities worldwide.

     At this point, the legislative push is coming only from the U.S. Department of Transportation and the Louisiana delegation in Congress.  You can help!

     Please contact your United States Congressional Representative and Senators and urge the inclusion of The Washington Area Model Accessibility Project (WA-MAP) in current appropriations considerations. Ask that it be included in the new Federal Highway capital budget appropriations known as SAFTEA.

     If you'd like to have more information about talking signs, contact Jeff Moyer at 440-442-2997 or jeff@talkingsigns.com

California Council

   Our Fall convention took place in Los Angelesat the Airport Crowne Plaza Hotel October 16 thru 19, 2003.
     We departed from our usual program format. The California Council of the Blind Publications Committee, Rehab Services Committee and California Council of Citizens with Low Vision co-sponsored a two and a half hour Writers Workshop Thursday afternoon. The workshop was conducted by Carol McCarl, editor of Dialogue Magazine and Winifred Downing, editor of The Blind Californian. These two women gave a marvelous presentation which was recorded and can be heard by going to www.ccbnet.org and clicking on the Convention link.
     A brief business meeting was held following the workshop. It was the first time in a long time our CCCLV minutes and treasurers report were given in person; Secretary, currently Joan Black and our new Treasurer, Donna Sanchez. Donna not only has our bank records up-to-date but to the penny. And she has prepared a mailing for dues renewal to the 2003 members, plus she compiled a list of previous members from membership lists going back to 1994 in an effort to increase our membership. First Vice President Beryl Brown gave a status report on the development of the manual for Project Insight California (PIC).
     The Friday morning joint session with the Committee on Access and Transportation (CAT) had a two hour workshop on Accessible Pedestrian Signals (APS) by Linda Myers, an O&M instructor inMarin County in northern Californiaand Eugene Lozano, Jr., chair of the CAT. This was a fan out training from an eight hour workshop put on byWestern Michigan University earlier this year in Seattlethrough a grant from Project Action. Materials from this event are also available on the CCB website. Then, Anthony Donaldson from Kaiser Permanente gave an update on the efforts of this gigantic HMO to comply withADA.
     Saturday morning Bonnie Rennie, chair of the Senior Blind Committee, chaired a session during which one of our members, Dr. Flora Beck and Jill Bellows, cruise agent spoke about "Cruisin' without Bruisin'" and Jane Lombard and Socorro Arroyo-Merchain, ILS, Counselors from the Dayle McIntosh Independent Living Center (ILC) in Orange County, described their program and services for people who are losing their vision. It was especially refreshing to learn about this type of program being provided by an ILC. Dr. Bill Takeshita, Director of Optometric Services at the Center for the Partially Sighted inWest Los Angelesgave a dynamic presentation. Dr. Bill, as he prefers to be called, announced in January of this year that he is now experiencing low vision. This has led Dr. Bill to look at service delivery methods from a more consumer oriented point of view. As a result, he has been doing training to enlighten his colleagues. This session was also recorded and is available on the CCB website.
     Our next convention will be at the Newark/Fremont Hilton Hotel in northernCaliforniaApril 15 thru 18, 2004.

Delaware Valley Council of Citizens with Low VISION, DVCCLV. We welcome members from the Philadelphia area, Southern New Jersey, and Delaware. We share information about low vision and our triumphs and trials related to our low vision at the support sections of our monthly meetings.

This year, Betty Pannell, developed a website for our chapter. Visit this site at http//home.earthlink.net/~DVCCLV.

In September, members of our chapter went to the IMAX Theater at the Franklin Institute Science Museum. After viewing two the movies on the giant screen, we enjoyed pizza and compared how each member’s particular vision limitations affected his or her perception of the movies we had seen. Although descriptive video is available at IMAX Theaters throughout our country, this is not the case at the Franklin Institute. Therefore we drafted and sent a letter to the director of operations at the IMAX here advocating that descriptive video be offered here.

In November members of our chapter attended an audio described performance of the play, “Top Dog Under Dog” at the Plays and Players Theater. What a pleasure to sit in an audience and not feel that we were missing something others who do not have impaired vision can see! Our chapter has been advocating for audio described theater performances.

Metropolitan Council of Low Vision Individuals, MCLVI. We welcome members from Northern New Jersey, New York and New England. Our officers are President Ken Stewart, Vice Pr4esident Isolde Keilhofer, and Treasurer Mildred Spinner. We meet in a Lower Manhattan office building, located directly on top of where a number of major subway lines converge. We have been pleased to offer support and low vision information to several new Chapter members. Much of our time and energy continues to focus on transportation issues. This year we have participated in a series of discussions with local bus officials pursuing ways of gaining better compliance with federal requirements that drivers announce stops. We have given attention to signage in subway stations and Grand Central Terminal and to more effective announcements by commuter rail conductors.

For more information about this chapter call Ken Stewart at 845-986-2955.

National Capitol Citizens with Low Vision, NCCLV members were treated to a hike especially

designed for those with visual impairments at Rock

Creek Park in Washington, DC.  An eager to please park ranger discussed the park's topography (AKA layout) and history.  She pointed out things that we might not have noticed such as mushrooms (and poison ivy which was especially helpful).  She showed us how to identify bird calls and trees.  An added bonus...because of Hurricane Isabel, we were able to see and hear things that would not have ordinarily been possible such as a bird's nest and the peaceful sound of waterfalls.

     For information about this chapter based in Washington DC contact Barbara Milleville, Chapter President at 301-496-5248 or email at NCCLV@yahoo.com.

Note:  To learn more about beginning a CCLVI Chapter in your area, call CCLVI at 800-733-2258.

Editor’s Note:  The following article is presented here with permission from Newswise—an on line news service, www.Newswise.com.

     A call for public health action, increased funding for research, and creative educational programs in both the developing and developed worlds may be an outcome of the first international conference on women and blindness.  Vision experts from around the country and the world gathered to explore why women are nearly twice as likely to lose their vision as men and how to stem the tide of blinding diseases in women. Called "Improving Women's Eye Health: Strategies to Address the Greater Burden of Blindness Among Women" and sponsored by the Women's Eye Health Task Force based at Schepens Eye Research Institute, the conference was held at the Harvard Club on November 7, 2003.

     The conference was attended by public health policy makers, health care providers, scientists, organizations for the blind, the women's health collaborative, and vision experts.  It is the first public forum held by the Women's Eye Health Task Force, founded in 2002 by a group of concerned

scientists at Harvard's Schepens Eye Research Institute in response to a statistic just coming to light -that two-thirds of the world's blind are women.

These Schepens scientists invited and joined forces with vision experts throughout the US to form a national task force to begin a battle against eye

disease in women.

     The extent of the problem of blindness in women had became clear with the publishing of a meta analysis of more than 70 epidemiological studies on blindness conducted over the past 20 years.  These studies showed that women accounted for most of the world's blind. In addition, World Health Organization (WHO) statistics indicate that 150 million people are living with low vision and more than 44 million people are blind. Two-thirds of the people suffering from visual impairment are women. Of the one million blind people in the United States, over 700,000 of them are women. In the United States, 2.3 million women are visually impaired out of a total of 3.4 million Americans with visual impairments.

     Although there are more older women in developed countries and more younger

women in developing countries dealing with vision loss, the overall statistics remain the same. Scientists theorize that longevity, smoking, nutrition, and environmental factors may be causing increased eye disease in women in developed nations, while poverty and lack of access to health services are contributing to the appalling statistic in developing countries.

     "The fact is we don't have all the answers, but what we do know is that living in a developed, industrialized country does not protect a woman from the risk of vision loss," says Ilene K. Gipson, PhD, a senior scientist at Harvard's Schepens Eye Research Institute and the chair of the Women's Eye Health Task Force, who gave welcoming remarks at the conference, along with Wayne Streilein, MD, president of Harvard's Schepens Eye Research Institute and vice chair of ophthalmology at Harvard Medical School, and Joan W. Miller, MD, chief of ophthalmology at Massachusetts Eye and Ear Infirmary and chair of ophthalmology at Harvard Medical School.

     Gipson continued: "We hope this conference will be the first step in grappling with the reality of this problem and laying out some strategies to address it.

There has been greater recognition of the issue and more resources focused on blindness and women in developing countries (although still not enough) than in the West."

     Here are some conference highlights.

     In the keynote speech, "Translating Research into Public Health Action," Hugh R. Taylor, MD, the managing director for the Centre for Eye Research at the University of Melbourne in Australia described the impact of low vision on the individual and society, the barriers to preventive care and various successful public health initiatives he created in Australia. "We are looking to Dr. Taylor's efforts as model strategies to help us in our fight against blindness in women," says Gipson.

      In "Gender and Blindness" Paul Courtright, DrPH -- a lad investigator of the meta-analysis, an epidemiologist at the University of British Columbia and the leader of a gender-oriented outreach program at the Kilimanjaro Centre for Community Ophthalmology in Moshi, Tanzania -- focused on women and blindness in the third world. He described the results of his studies that suggest that attitudes and beliefs held by men in these societies are contributing to blindness in women. Men in some cultures, he has found, believe that medical care for their wives is not as important as it is for themselves as heads of households. He described creative educational programs that target men to convince them that visually healthy wives can be more productive family members.

     "Major Concerns in Women's Health," was the topic of a presentation by Julie E. Buring, DSC, a professor of ambulatory care and prevention at Harvard Medical School and the principal investigator of the Women's Health Study at Brigham and Women's Hospital. She talked about vision health issues in the context of all the major health concerns facing women. For instance, she pointed out that

lung cancer has overtaken breast cancer as the leading cause of cancer death in women, and that heart disease is the leading cause of death in women as well as men. She also described the risk factors for diseases such as diabetes and heart disease, which are the same risk factors for eye disease--poor dietary habits, smoking and other lifestyle issues.

     In "Sex Steroid Hormones and Eye Disease," Debra A. Schaumberg, ScD, OD, MPH, an assistant professor of Medicine in the Division of Preventive Medicine at Brigham and Women's Hospital and Harvard Medical School, described her landmark studies that indicate a strong relationship between the use of hormone replacement therapy and dry eye syndrome, a painful debilitating eye disease affecting millions worldwide, mostly women.

     "Nutritional Factors and Eye Disease" by Richard D. Semba, MD, an associate professor of Ophthalmology, Molecular Microbiology and Immunology, and International Health at Johns Hopkins University School of Medicine and The

Wilmer Ophthalmological Institute in Baltimore explored what nutritional factors are known to have an impact on vision and the nutrition prevention measures women can take to increase their eye health. For example, arotenoids and antioxidant vitamins appear to protect people from getting cataracts and age-related macular degeneration. And maintaining a healthy weight can prevent type 2 diabetes, with its disastrous consequences for the eye.

     "Autoimmunity in Eye Diseases" was the focus of a presentation by Janine A. Smith, MD, deputy clinical director of the National Eye Institute. Smith discussed the higher incidence of autoimmune diseases in women and the ocular, potentially blinding features of these conditions. She also described her research on an autoimmune disease called premature ovarian failure, which affects women under the age of 40.  The ovarian failure leads to decreased estrogen, dry eye and even osteoporosis.

     Following each presentation, a panel of experts discussed the issues raised with the presenter and the audience.

     The Women's Eye Health Task Force is based at Schepens Eye Research Institute, which is an affiliate of Harvard Medical School and the largest independent eye research institute in the nation.

People seem to think they know what "blind" is, and they seem to think they know what "sighted" is. But those of us who are neither seem to fall between the cracks. People don't know what to call us - often they don't even seem to know that we exist - and we're not always sure what to call ourselves.

Which term is best? Low vision? Visually Impaired? Nearsighted? Legally blind? Partially sighted? Visually challenged? The National Association for the Visually Handicapped has its own term: "hard of seeing." The multiplicity of terms suggests how difficult it is to categorize people with visual impairments, but any of these certainly beats being called "glasses" or "four-eyes" or "Mr. Magoo" (though I do admit to a certain fondness for that character).

We discussed this topic on WGPS, our Working Group for the Partially Sighted email discussion group. The term "legally blind" got a lot of attention. Some do not like it at all. They find the term vague and confusing:

I have hated the term "legally blind" since I had a colleague who was "legally blind" but drove her car. Are people who can't see at all "illegally blind"?

I have never liked the term "legally blind" either. I prefer the term "vision impaired."

For me when I used to use the term "legally blind" people thought I had a lot less vision than I have. Now that I use the term "vision impaired" they seam to have a better understanding of my vision.

Actually for me legal blindness depends on which eye chart is used to measure my vision. If the standard eye chart is used, my vision tests at 20/200 which is legally blind, but when a more accurate low vision eye chart is used my vision tests at 20/160 which is not legally blind. That is another reason why I use the term "vision impaired" instead of "legally bind" to describe my vision.

However, others actually find the term liberating. From one member:

My experience has been different. The term "legally blind" gives me some official recognition. "Vision impaired" is like "nearsighted" - it can apply to anyone. But "legally blind" is a term that actually means something (even if the precise technical meaning is not always understood).

When I was a student going for my music therapy degree, being able to call myself “legally blind” gave me recognition, respect, and even

dignity. My professors understood they had to make reasonable accommodations and they did so willingly. How things have changed since my earlier student days, when I was merely nearsighted," which to most people was a synonym for "inept." Back then the burden was always on me to make explanations and excuses for the difficulties I had doing certain things. It was painful and humiliating.

How refreshing it is now to be able to say there is a recognized disabled group to which I belong. The burden then shifts to the institution to make sure that the disability is accommodated.

I do not want to go back to the old days. I say let's keep the term "legally blind." The illegally blind will have to fend for themselves.

And from another:

Thanks for saying it so well. When my vision was 20/60 in my best eye, I could see but it was never that good. I couldn't use any such term as “legally blind” though so everyone thought I could see normally and then questioned me when I couldn't see something they could.

I am also finding the term “legally blind” one that is helping me accept the place I am now in. I even say “blind” sometimes to people who are really clueless. It helps them accept who I am and helps me deal with the same thing.

Just another opinion. All of us have them!

There are also practical benefits, if one can qualify as "legally blind":

Here in GA legally blind is 20/200 and opens the door to all kind of benefits, like services at the association for the blind, a tax deduction and special consideration by the Social Security Disability folks. Much of this is probably true elsewhere too.

It seems ironic that a term that can so profoundly affect our self-image is dependent on the judgment of a doctor that may be very subjective. As another member states:

When I first had a badge unceremoniously put on my shirt that said "I have Low Vision," I was offended by a probably well-intentioned oculist. I began to try to find the legal definition of “legally blind” in Texas law. To make a bad pun, it's a gray area in the law in this state. A "professional" has to declare that you have low vision "in their opinion." 20/400 doesn't guarantee any diagnosis. I checked again this week with my ophthalmologist during an appointment. What I gathered was that you have to get a professional with enough qualifications to pronounce you “legally blind” (in the eyes! of the law.) When I found out that here, at least, when you are carrying a "blind" cane and are walking on public and business property, you have the right of way; I decided to try never to be without a cane. It was amazing how quickly I got used to it. I prefer "legally blind," because of the legal mantle. I DO expect small but special considerations.

So that is another point in favor of "legally blind": it places one under the protection of the Americans with Disabilities Act, requiring one's employer to make reasonable accommodations in the workplace according to one's disability. Another advantage of the term may be its usefulness in explaining one's condition to others. Even if people don't understand what "legally blind" actually means (and very few people do), the term sounds official and may be all they really need to know.

I can honestly say terminology seems to be a big issue. I prefer "legally blind” or “low vision”. Personally I think we can go too far. I remember when "visually challenged" was the politically correct way to say it. I guess I think of myself more “legally blind” than “low vision” because when I try to explain my vision to sighted people this one makes the most sense to them.

True. I can't really imagine telling people I'm

visually challenged" when they ask me why I

can't see so well.

The bottom line is, these labels do affect how others see us and how we see ourselves, but we can't let any of them become a definition of who we are. There is no substitute for the knowledge of one's identity that comes from inside oneself, and that endures no matter how we are categorized or stereotyped by others.

Being a member of a group of people with similar experiences can help support that knowledge of one's identity.

(If you would like to become a member of WGPS, please send me your request at laflauta@hotmail.com.)

Reprinted with permission from the Stanford Report,

November 19, 2003.

     An interdisciplinary team of experts is working to reverse the effects of age-related macular degeneration -- the leading cause of blindness among Americans over age 65. The researchers plan to use eye tissue transplants for patients who still have some vision and prosthetic chips for those who have lost all vision.

      Stacey Bent and Harvey Fishman are working with a prototype chip that someday may help restore sight in vision-impaired people.

      "This is a very optimistic and ambitious project," said chemical engineer Stacey Bent, who with ophthalmologist Harvey Fishman jointly leads the research efforts.

     Fishman presented the first complete design for a chip that functions like the natural retina of the eye. It uses chemicals to transmit nerve impulses to the brain. He spoke at the annual meeting of the American Academy of Ophthalmology in Anaheim, November 2003. Also in the same week, two of Bent's graduate students, Christina Lee and Neville Mehenti, presented the group's work at the annual meeting of the American Institute of Chemical Engineers in San Francisco.

      Optimistically, human trials of the tissue transplant could begin within the next six months, Fishman said. The retinal prosthesis is a longer-term project -- trials could begin in two to three years. The team already has successfully implanted prototype devices into animals and is refining the surgical techniques to prevent complications such as bleeding or retinal detachments.

Tissue transplant

      In a healthy eye, vision occurs when light-sensitive cells in the retina convert light into electrical signals that the optic nerve then transmits to the brain. These cells receive nutrients and excrete waste through a thin layer of cells that covers them. In age-related macular degeneration, this life-giving layer degrades over time, leading to the eventual death of the cells beneath.

      Patients with the disease typically lose central vision. In about 80 percent of those patients, some underlying cells remain alive although the cover layer has degraded. The team is recreating the protective cell layer using cells and tissues from other parts of the eye. This involves removing the tissue that normally covers the eye lens and using it as a support membrane on which to grow healthy cells taken from the iris. The iris cells are capable of growing into different types of cells that perform different functions. The lens tissue can be replaced with an artificial lens, as is routinely done during cataract surgery. The newly created layer would then be transplanted into the retina.  Since only the patient's own tissues and cells are used, this type of transplantation reduces the possibility that the immune system will reject the implant.

      The major challenge to this approach is getting the transplanted layer of cells to look and act like the naturally occurring layer. The cells need to be densely packed onto the membrane and perform the necessary feeding and waste-removal functions. Bent and her team of engineers are devising ways to modify how the iris cells cluster on the surface of the lens capsule tissue using some of the same techniques used to make patterns on a computer chip. They also are monitoring the biological function of the cells. At the same time, the surgeons are developing and testing microsurgical techniques for transplanting the newly developed materials into the eye.

      "That's actually why it's such a fun project, because it's not just academic," said Bent. "These problems have to be approached in both directions -- the engineering and the medical side of it." Fishman says that without the contributions of experts such as ophthalmology Professor Mark Blumenkranz in retinal surgery, and others in fields such as physics, chemistry and engineering, the work would not have been possible. "This is the new generation of super highly collaborative scientists," he said.

'The holy grail of prostheses'

      For the remaining 20 percent of patients with age-related macular degeneration, all the light-sensitive cells have died. In those cases, a pinpoint-sized electronic device capable of receiving light and translating it into nerve-stimulating signals would be implanted into the eye. Bent called it "the holy grail of prostheses -- it's coming up with something electronic that could take the place of something that's naturally there but is having problems because of disease."

      Bent said the investigators are working toward the most "physiologically correct" kind of prosthesis. They want to stimulate the nerve cells with chemicals, in the same way that neurons work naturally. When hit with light, the prosthesis would release a burst of neurotransmitter chemicals through a system of tiny valves. Those chemicals would stimulate the neurons.

      Retinal prosthetic devices developed by others over the last five years stimulate the nerve cells with metal electrodes. But Fishman is concerned about the long-term effects of constantly hitting cells with electrical currents. The early retinal prostheses also have been relatively large and positioned far away from the neurons, so the electricity affects everything in the vicinity rather than focusing on the nerve cells. Fishman compares the process to hitting the nerve cell over the head with a large electrode hammer. "Maybe we can tickle the retina instead," he said.

      To do this, the researchers will develop a chip from soft polymer material that can conform to the curvature of the back of the eye. This material would be better suited to the task than a traditional silicon chip. Researchers are developing techniques for extending the nerve cell branches so they can be close enough to the chip to be stimulated individually.

      The initial work on the project was made possible by a grant from Bio-X and continued through industry support from VISX Inc., a California-based company that specializes in the design, manufacture and marketing of proprietary laser vision correction technologies. The investigators have applied for additional funding from the National Institutes of Health to continue their work.

      The new technologies being developed to solve vision problems may find applications in other areas of medical research for conditions that affect many more people. "We are developing tissue engineering ways to regenerate nerve cells and to release drugs in very selective ways," Fishman said. "This has tremendous implications for the field of drug delivery in the eye and other parts of the body including the brain." He believes that neurodegenerative diseases such as Parkinson's and Alzheimer's may benefit from the technologies being developed.

      Czerne M. Reid is a News Service intern.

     If you or someone you know is thinking about taking part in a clinical trial, this can answer some of your questions.

     The National Eye Institute (NEI) conducts or sponsors clinical trials to find new ways to treat or prevent eye disease and vision loss. Clinical trials in vision research have led to new

medicines and surgeries that have saved or improved sight for thousands of people.

What is a clinical trial?

     Clinical trials involve medical research with people. Most medical research begins with studies in test tubes and in animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments is to try it on patients in a clinical trial.

What kinds of clinical trials are there?

     Clinical trials are carried out in three parts, or phases.

     Phase I. Researchers first conduct Phase I trials in small numbers of patients and healthy volunteers. If the new treatment is a medicine, researchers also want to find out how much of it can be given safely.

     Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on an eye disease or disorder.

     Phase III. Finally, researchers conduct Phase III trials to find out whether the new treatments work better, the same, or not as well as the standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people around the country--can also compare new treatments with no treatment.

Where do clinical trials take place?

     The NEI supports clinical trials at about 250 medical centers, hospitals, universities, and doctors' offices across the country. NEI researchers conduct other clinical trials at the National Institutes of Health in Bethesda, Maryland.

How is a clinical trial conducted?

     At each facility taking part in the clinical trial, the principal investigator is the researcher in charge of the study. Most of the people who conduct clinical trials in eye disease are ophthalmologists or optometrists. The clinic coordinator knows all about how the study works and makes all the arrangements for your visits.

Treatment for Herpes of the Eye.

     The Herpetic Eye Disease Study (HEDS) is an example of a Phase III treatment trial. Herpes of the eye, which is controllable but incurable, can produce a painful sore on the eyelid and inflammation of the cornea, the transparent tissue on the surface of the eye. Previous studies showed that once people develop ocular herpes, they have up to a 50 percent chance of having a recurrence. In one part of the HEDS, researchers followed 703 patients who had

herpes of the eye during the preceding year, but did not currently have an active case of the disease. Of this number, 357 were treated with the antiviral drug acyclovir by mouth, and 346 received a placebo.

     Results: Scientists found that acyclovir reduced by 41 percent the probability that herpes of the eye would return. The findings from this research have helped to change how doctors treat the disease.

     All doctors who take part in the study carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat you in the study. The protocol ensures that all patients are treated in the same way, no matter where they receive care.

     Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment.

     Patients who get the new treatment are in the treatment group.

     Patients who get the standard treatment or no treatment are in the control group.

     In some clinical trials, patients in the treatment group get a new medicine and patients in the control group get a placebo. A placebo is a harmless substance--a "dummy" pill--that looks like the real treatment but has no effect on the eye disease or disorder. In other clinical trials, where a new surgery or device (not a medicine) is being tested, patients in the control group may receive a sham treatment. This treatment, like a placebo, has no effect on the eye disease or disorder and does not harm patients.

     Researchers assign patients randomly to the treatment or control group. This is like flipping a coin to decide which patients are in each group. Patients do not know ahead of time which group that is. The chance of any patient getting the new treatment is about 50 percent. Patients cannot request to receive the new treatment instead of the placebo or sham treatment. In some clinical trials, where the disease or disorder affects both eyes, one eye may be in the treatment group, and the other eye may be in the control group.

     Patients often do not know until the study is over whether they are in the treatment group or the control group. This is called a masked study. In some trials, neither doctors nor patients know who is getting what treatment. This is called a double masked study. These types of trials help to ensure that what patients or doctors might think about the treatment will not affect the study results.

What is expected of patients in a clinical trial?

     Patients in a clinical trial are expected to have eye exams and other tests.  You may also need to take medications and/or undergo surgery. Depending upon the treatment and the examination procedure, you may need a hospital stay.

     You may have to go back to the medical facility later for follow-up examinations. These exams help find out how well the treatment is working.  Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.

Natural History Studies.

     Unlike clinical trials, in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how certain eye diseases or conditions develop over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for certain eye diseases or disorders. A natural history study may also tell researchers if diet, lifestyle, or occupation affect how a disease or disorder develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a disease or disorder usually progress? How bad will vision become? Will treatment be needed?

What are the benefits of participating in a clinical trial?

     Participating in a clinical trial can bring many benefits:

     There is the hope that a new treatment will be more effective than the current treatment for an eye disease or disorder. Only about half of the people in a clinical trial get the new treatment. If the new treatment is effective and safer than the current treatment, those patients who do not receive the new treatment during the clinical trial may be among the first to benefit from the new treatment when the study is over.

     If the treatment is effective, it may help to improve vision and control or prevent eye disease or disorder.

     Clinical trial patients receive the highest quality medical care. Experts watch them closely during the study and may continue to follow them after the study is over.

     People who take part in these trials contribute to new knowledge that may help other people with the same eye problems. In cases where certain eye diseases or disorders run in families, your participation may lead to better care for family members.

The Informed Consent.

     Once you agree to take part in a clinical trial, you will be asked to sign an informed consent. This document explains a clinical trial's risks and benefits, what researchers expect of you, and your rights as a patient.

What are the risks?

     Clinical trials may involve risks as well as possible benefits.

     Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment, may not work at all, or may be harmful.

     The treatment you receive may cause side effects that are serious enough to require medical attention.

How is patient safety protected?

     Clinical trials can raise fears of the unknown. Understanding the safeguards that protect patients can ease some of these fears.

     Before a clinical trial begins, researchers must get approval from their hospital's Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect patient safety.

     During a clinical trial, doctors will closely watch you to see if the treatment is working and if you are having any side effects. All the results are carefully recorded and reviewed.

     A group of experts--the Data and Safety Monitoring Committee—carefully watches each clinical trial supported by the NEI. This group can recommend that a study be stopped at any time.

     Patients are asked to take part in a clinical trial only if they volunteer and understand the risks and benefits.

What are a patient's rights in a clinical trial?

     Patients who are eligible for a clinical trial will be given information to help them decide whether to take part. As a patient, you have the right to:

     Be told about all known risks and benefits of treatments involved in the study.

     Know how the researchers plan to carry out the study, for how long, and where.

     Know what is expected of you.

     Know any costs involved for you or your insurers.

     Be informed about any medical or personal information that may be shared with other researchers directly involved in the clinical trial.

     Talk openly with doctors and ask any questions.

     After you join a clinical trial, you have the right to:

        Leave the study at any time. Participation is strictly voluntary. However, you should not enroll if you do not plan to complete the study.

       Receive any new information about the new treatment.

       Continue to ask questions and get answers.

       Maintain your privacy. Your name will not appear in any reports based on the study.

       Be informed of your treatment assignment once the study is completed.

Uncovering an Ineffective Treatment.

     Decompression surgery was once thought to be a sightsaver for people with ischemic optic neuropathy, a swelling of the optic nerve. An NEI-sponsored clinical trial examined this surgery in 244 patients.

     Results: The operation proved to be neither safe nor effective. In addition, nearly half of those who did not have the surgery had improved eyesight within 6 months. Because of these results, the NEI stopped the study earlier than expected and mailed a special bulletin to 25,000 doctors.

What about costs?

     In some clinical trials, the medical facility conducting the research pays for treatment costs and some other expenses. You or your health insurance may have to pay for some things that are considered part of standard care. These things may include hospital stays, laboratory and other tests, and medical procedures.  You also may need to pay for travel between your home and the clinic. For clinical trials conducted at the NEI's medical facility in Bethesda, Maryland, medical care is provided at no cost to patients. You should find out about costs ahead of time. If you have health insurance, find out exactly what it will cover. If you don't have health insurance, or if your insurance company will not cover your costs, talk to the clinic staff about other options for covering the cost of your care.

Saving the Sight of Premature Infants.

     Retinopathy of prematurity (ROP) occurs when abnormal blood vessels grow and spread throughout the retinas of premature infants. The disorder mostly affects infants who weigh less than 3 pounds at birth. The NEI sponsored a clinical trial to find out whether a procedure called cryotherapy was a safe and effective treatment to prevent ROP. In this procedure, doctors briefly touch spots on the surface of the eye with an instrument called a cryoprobe. This freezes parts of the retina to stop the growth of abnormal blood vessels.

     Results: Fewer of the infants' eyes that were treated with cryotherapy became blind compared with the eyes of untreated infants. Researchers continue to follow these children to gain information about the long-term effects of the procedure.

What questions should you ask before deciding to join a clinical trial?

     Questions you should ask when thinking about joining a clinical trial include the following:

     What is the purpose of the clinical trial? What are the standard treatments for my disease or condition? Why do researchers think the new treatment may be better? What is likely to happen to me with or without the new treatment?

     What tests and treatments will I need? Will I need surgery? Medicines? Hospitalization? How long will the treatment last? How often will I have to come back for follow-up exams?

     What are the treatment's possible benefits to my condition? What are the short- and long-term risks? What are the possible side effects?

     Will the treatment be uncomfortable? Will it make me feel sick? If so, for how long? How will my health be monitored?

     Where will I need to go for the clinical trial? How will I get there?

     How much will it cost me to be in the study? What costs are covered by the study? How much will my health insurance cover?

     Will I be able to see my own doctor? Who will be in charge of my care?

     Will taking part in the study affect my daily life? Will I have the time to be in it?

     How do I feel about taking part in a clinical trial? Are there family members or friends who may benefit from my contributions to new medical knowledge?

Laser Treatment for Diabetic Retinopathy.

     Two NEI-sponsored clinical trials examined the use of laser treatment in patients with diabetic retinopathy, a disease that damages the blood vessels in the retina. About half of the 16 million Americans with diabetes have this disorder, which is a leading cause of blindness in working-age adults. Laser treatment was given to 4,453 people with diabetes at 25 medical centers. One eye of each patient received laser treatment. The other eye was not initially treated.

     Results: Laser treatment was very effective in preventing vision loss in more than 90 percent of patients with diabetic retinopathy.

What clinical trials are being held? Who can take part in them?

     The NEI conducts or sponsors research on many eye diseases and disorders.  Because funding for eye research goes to the medical areas that show promising research opportunities, it is not possible for the NEI to sponsor clinical trials in every eye disease and disorder at all times.

     Not everyone can take part in a clinical trial for a specific eye disease or disorder. Each study enrolls patients with certain features, or eligibility criteria. These criteria may include the type and stage of disease or disorder, as well as the age and previous treatment history of the patient.

     You or your doctor can contact the NEI to find out more about specific clinical trials and their eligibility criteria. If you are interested in joining a clinical trial, your doctor must contact one of the trial's investigators and provide details about your diagnosis and medical history.

     The NEI's Website lists the clinical trials the NEI is helping to support. Each trial description includes information on its background and purpose, as well as patient eligibility. There is information on how to participate in a trial and how to refer a patient to a trial.

Preventing Blindness in People with AIDS.

     Many people with AIDS have an eye infection known as CMV retinitis. Drugs such as ganciclovir can control the infection and reduce the chance of blindness. In the past, doctors gave the drug through a tube that had to remain in a vein. It took 2 hours to give each dose. Another way to give ganciclovir is through the use of a tiny implant in the eye. The implant slowly releases the medication for several months. The NEI supported a clinical trial to find out whether this implant was safe and effective.

     Results: Almost all of the eyes treated with the implant had complete control of their eye infection and maintained nearly perfect vision. The implant also improved the patients' quality of life by making treatment easier.

What is the National Eye Institute?

     The National Eye Institute (NEI) is one of the Federal government's National Institutes of Health. It was established by Congress in 1968 to discover safe and effective ways to prevent, diagnose, and treat eye diseases and disorders.  The NEI is the major sponsor of vision research in the United States. For more information about the NEI, contact:

National Eye Institute, 2020 Vision Place, Bethesda, MD 20892-3655, Telephone: (301) 496-5248, E-mail: 2020@nei.nih.gov

     Frustrating!  That's what glasses were for me.  As a kid, I'd get peanut butter and fluff on them and even when spotless, they didn't help much.  So when I was 10, I discarded them altogether.  My frustration ended in February, when I visited Rehabilitation Engineer Bob McGillivray at the Carroll Center for the Blind in Newton, Massachusetts.  He'd been showing me a new CCTV, warning me not to be frightened

when it talked.  This was too much!  My husband said jokingly, ”All they need to make now are glasses with a magnifier inside so you can walk around."  Bob smirked; and, without a word, opened a small case.  He pulled something out and placed it in

my hands.  "Try these on," he said.

     It was like a combination of magnifier, telescope and video camera.  The first thing I noticed was that Bob had a mustache.  I've known him for 12 years and had never realized it.  Then I saw my husband and daughter clearly from several feet away.  Incredible!  I was so impressed that these glasses magnified so well, I contacted the company to request one for a review.

     Enhanced Vision in Huntington Beach, California is the maker of Jordy (Joint Optical Reflective Display).  It's a complete low vision system that can magnify up to 30x at a distance and up to 50x close-up.  It can even be used as a full-color CCTV when placed in its docking stand (sold separately).

     Jordy can help many people with low vision.  In certain cases, someone with 20/400 vision can improve to a near-perfect 20/40.  If you're looking for a hands-free tool that is both powerful and versatile, then this may be ideal, but it's not

necessarily ideal for everyone.

     "As with any low vision device, individual responses may vary," cautions Bob McGillivray.  He's demonstrated Jordy to more than 50 people and sees the best results with those who are comfortable using low vision equipment.  People who anticipate wearing Jordy and seeing exactly as they once did may be disappointed.  It's meant to

be used while sitting or standing still because there's no magnified peripheral vision.  Also depth perception and perspective are diminished.  But, those who can accept its few limitations and learn to use it to its fullest potential will find it to be a very powerful tool.

     Jordy arrives in a small protective case fully assembled with its lithium battery charged.  Each charge lasts two to three hours and an AC adapter is included, too.

     You also get a Sony battery charger, glare shields for outside use, a cleaning cloth, an extra nose piece and a belt clip.  It comes with a video-out cable, a video-in cable and a coupler for watching TV.  The instruction manual clearly explains how to use Jordy and you can call technical support for additional help.  The distributor you buy it from will likely train you, too.

     Two miniature TV screens are what you see as a tiny computer chip captures and projects images.  (If you wear prescription glasses for distance, use them with Jordy.)  A wire connects the glasses to a small control unit which can be held, clipped onto a belt, or slipped into a pocket.

     There are several buttons on top of the control unit.  These control functions such as power, auto-focus, and brightness.  On the side of the control unit is a square button for locating objects.  Press and hold this button as you look through the glasses.  What you're viewing will shrink in size so you can have the widest field of view.  Once you find the object on which you'd like to focus, lift your finger and Jordy

will automatically return to the original size you selected.  This is helpful when you're feeling lost; I sometimes got disoriented when I wore Jordy in a moving vehicle.

Everything whizzed by my window and it was hard to figure out what's what.  By using the locator button, I could see the big picture and find the area I'd like to view.  A little preplanning enabled me to focus on objects as we approached.

     In the middle of the control unit is the largest knob used to set magnification.  There are 16 preset levels from which to choose; a simple turn locks in the size you need.  I have a 10x telescope I use; Jordy outperforms it.  Not only are objects bigger, but the lighting makes everything clearer as well.

     Finally there's a round button which selects viewing mode.  Full color or black and white are used for distance or close-up viewing.  High-contrast positive or negative can

be used for reading.  Positive provides a white background with black text or negative, a black background with white text.  To read, the user slides the reading lens to the left and holds the material about 14 inches away.

     The unit can also be used to watch TV.  Either look directly at the TV while wearing Jordy, or connect it to your VCR.  A direct connection to the VCR will result in a clearer picture than merely looking at the screen.  You can't change the size while it's connected to the VCR, but you can control the brightness.  You can even view a computer monitor using Jordy, but the refresh rate needs to be changed.  I

changed mine with no problem.

     My Jordy experience was amazing.  At a bookstore, I read titles on shelves without having to pick up the books; and, in a restaurant, I scanned a menu with ease.  My few concerns are minimal.  Colors are sometimes slightly off--like how they appear on TV.  Also, I wish Jordy did a better job of magnifying small print.  (Of course, my visual limitations are such that others may find Jordy's magnification of small

print sufficient.)  I'd request an over-the-head strap; after wearing Jordy for awhile, my nose felt uncomfortable because of the weight.  The glasses weigh only eight ounces, but my nose wasn't used to it.  Overall though, Jordy is the most effective and versatile low vision tool I've ever used.  It's way more convenient than carrying everything I need to see easily.  I'd either need my CCTV, telescope, stand, and screen magnification software, or Jordy.  The convenience and portability can't be beat.

     Jordy's suggested retail price is $2,795.  To find a distributor near you, visit www.enhancedvision.com or call 888-811-3161.  For many people, these glasses will end frustration, as long as you keep your peanut butter and fluff in your sandwich and off your Jordy!

American Foundation for the Blind Aging and Vision Loss Task Force

212-502-7600

CCLVI Chapters

California Council

800-733-2258

Delaware Valley Council:

215-735-5888

Email: DVCCLV@earthlink.net.

Metropolitan Council

845-986-2955

National Capitol Council

301-496-5248

Email: NCCLV@yahoo.com.

Citrix Systems Inc.

Sabrina Rios,

954-267-2529  sabrina.rios@citrix.com, http://www.citrix.com.

Delmar Travel

Dave Kronk,

800-999-6101

Dialogue Magazine

800-860-4224

Enhanced Vision

888-811-3161 http://www.enhancedvision.com/jordy.php

GW Micro

Clarence Whaley,

Director of Sales and Marketing,

615-383-6248

E-Mail:  Clarence@gwmicro.com, http://www.gwmicro.com

Jeff Moyer

440-442-2997  jeff@talkingsigns.com

Matilda Ziegler Magazine

212-242-0263

Email: blind@bellatlantic.net

Medicare Rights Center

www.medicarerights.org

Mississippi State University-Rehabilitation Research and Training Center on Blindness and Low Vision (MSU-RRTC) Kelly Schaefer

662-325-7825,

email: Schaefer@ra.msstate.edu.

National Eye Institute, 2020 Vision Place, Bethesda, MD 20892-3655, Telephone: (301) 496-5248, E-mail: 2020@nei.nih.gov

National Vision Rehabilitation Cooperative

www.Meiicarenow.org

Newswise

www.Newswise.com

Prevent Blindness Ohio

Sherry Williams

614-464-2020

Vision Aid Services

6032 SE Pardee Street

Portland, OR 97206

800-473-3195

www.visionaid.com/cclvi.htm.

Women’s Eye Health Task Force

Schepens Eye Research Institute

Harvard Medical School

617-912-0100

Editor: Joyce Kleiber

CCLVI OFFICERS:

Patricia Beattie, President,

Bernice Kandarian, 1^st Vice President,

LeRoy F. Saunders, 2^nd Vice President,

Karen Johnson, Secretary,

Coletta Davis, Treasurer,

Ken Stewart, Past President

CCLVI BOARD MEMBERS:

Barbara Kron

Fred Scheigert

Jerry Weinger