The White House Conference on Aging Offers Great Opportunity for Input Regarding Older Americans with Visual ImpairmentPosted on 2/23/2015 at 12:22 PM
by Rebecca Sheffield
By Rebecca Sheffield, Ph.D, Senior Policy Researcher, AFB and Alberta Orr, MSW, gerontologist and faculty, Hunter College.
The 2015 White House Conference on Aging (WHCOA) will mark the 50th anniversary of Medicare, Medicaid, and the Older Americans Act, as well as the 80th anniversary of Social Security. The White House Conference on Aging has been held once a decade, beginning in 1961, and is designed to help chart the course of aging policy. The 2015 WHCOA is an opportunity to look ahead to the issues that will help shape the landscape for older Americans for the next decade. Key issues to be the focus of the Conference are:
- Retirement security. Financial security in retirement provides essential peace of mind for older Americans but requires attention during our working lives to ensure that we are well prepared for retirement.
- Long-term services and supports. Older Americans overwhelmingly prefer to remain independent in the community as they age. They need supports to do so, including a caregiving network and well-supported workforce.
- Healthy aging. This topic will be all the more important as baby boomers age. As medical advances progress, the opportunities for older Americans to maintain their health and vitality should progress as well.
- Elder justice. Seniors can be particularly vulnerable to financial exploitation, abuse, and neglect. The Elder Justice Act was enacted as part of the Affordable Care Act, and we need to realize its vision of protecting seniors from scam artists and others seeking to take advantage of them.
These are all critical issues for older people with vision loss. We have several opportunities to provide feedback to the planning of the WHCOA to express the concerns of and for older people who are blind or visually impaired related to these key priorities.
Three Major Ways to Have Input
WHCOA Launches Series of Regional Forums to Engage PublicThe forums are co-sponsored by AARP and are designed to engage with older Americans, their families, caregivers, leaders in the aging field, and others on the key issues affecting older Americans. While the Tampa forum took place on February 19, the remainder of the meetings are scheduled as follows:
- Phoenix, AZ on March 31
- Seattle, WA on April 2
- Cleveland, OH on April 27
- Boston, MA on May 28
The 2015 White House Conference on Aging will be held in Washington, DC later this year. According to Nora Super, Executive Director of the WHCOA, "These forums allow us the opportunity to listen and learn from older adults and stakeholders as we continue to sharpen the vision of this year’s Conference and to directly engage with individuals across the country about these important issues...The regional forums will help ensure that as many voices as possible are part of the conversation around the 2015 Conference." Additional information on Conference activities can be found at the conference website.
American Foundation for the Blind Holds National Conversation on Aging an Vision Loss on April 9
In preparation for the WHCOA, the American Foundation for the Blind (AFB) is holding a National Conversation on Aging and Vision Loss on April 9 in Phoenix, Arizona during our AFB Leadership Conference. If you are in the Phoenix area, and would like to attend just this session at no charge, please contact Pris Rogers ( email@example.com) or leave a message at 480-382-1530. If you are interested in attending the entire conference, please register.
If you are unable to attend any of the above-mentioned meetings, we want your feedback. We are inviting input from older persons with vision loss, families, and service providers. We have created an online survey to gather your input.
Through the survey, please share your concerns about issues that affect older adults with vision loss that need to be addressed through state and national policy, in particular relating to the key conference issues outlined previously.
This is an opportunity for the leadership of the White House Conference to hear directly from Americans with vision loss, their families, and their supporters.
If you prefer to call in your comments, please record them at the following number: 480-382-1530. Alternatively, you may print off the survey questions and send them to AFB's Public Policy Center in Washington D.C.:
Rebecca Sheffield, Ph.D.
1660 L Street, NW, Suite 513
Washington, DC 20036
The results of this survey and the meeting in Phoenix will be posted on VisionAware.org later this spring.
by Priscilla Rogers
I Love Being an Eye Doctor
I love being an eye doctor! Helping people experience the richness of life by giving them the best possible vision brings me a strong sense of satisfaction and purpose. But sometimes, people lose vision despite our best efforts. Sometimes, people are born with blindness or serious vision impairment.
As eye doctors, we have a variety of special tools available to us to help those with vision impairment, but sometimes there is no substitute for a pair of eyes to see something. That is one reason why people who are blind and visually impaired have flocked to smartphones, especially Apple’s iPhone. By initiating a video chat, they can ask a friend or family member for assistance if they are available. The problem is that there isn’t always a friend or family member available.
How We Can Help Using Be My Eyes
That is where you and I can help. A brilliant new App called Be My Eyes has recently launched for the iPhone (an android version has not yet been released). The free app takes advantage of the iPhone’s camera and it’s video networking capabilities to connect a sighted person with a blind or visually impaired person. Requests only come in from 7AM-10PM in your local time zone and can be passed on to another volunteer if you are busy. It is available worldwide in 10 languages.
Nearly 7,000 persons who are blind and visually impaired have already downloaded the app in the week it has been available. Another 90,000 sighted volunteers have agreed to be someone’s eyes. You can learn more at a bemyeyes.org. They have a great video showing some of the small ways that we can be a big help to a visually impaired person...
There are so many people living with vision impairment in our communities. I am excited to be able to help with the Be My Eyes app for my iPhone. It’s nice to know that I can do so much in a way that asks just for a moment of my time. I hope you will join me in this worthy project!
Excerpted from Spectrum Eye Care
Editor's note: The Apple iPhone and iPad are accessible right out of the box, which makes them a good choice for consumers with vision loss. Find out more about accessibility options..
Also check out Audrey Demmitt's experience with the app
by Maureen Duffy
New glaucoma research from the University of Michigan (U-M) indicates that patients are more likely to comply with a glaucoma medication regimen that includes generic – rather than brand-name – drugs, suggesting that the high cost of co-pays for brand-name drugs may be a significant deterrent to compliance.
The U-M research team examined patient medication-compliance patterns before and after latanaprost, a generic prostaglandin analogue (PGA) glaucoma drug [explained below], became available on the market in 2011. They found that patients who continued to use brand-name drugs (such as Xalatan) were 39 percent more likely to experience a decline in compliance, compared to those who switched to the newly-available and less expensive generic latanoprost.
Ophthalmology: the Journal
The research, entitled Impact of the Introduction of Generic Latanoprost on Glaucoma Medication Adherence, has been published online ahead of print in the February 10, 2015 edition of Ophthalmology, the official journal of the American Academy of Ophthalmology.
Ophthalmology publishes original, peer-reviewed research in ophthalmology, including new diagnostic and surgical techniques, the latest drug findings, and results of clinical trials. The authors are Joshua D. Stein, Nakul Shekhawat, Nidhi Talwar, and Rajesh Balkrishnan, from the University of Michigan, Ann Arbor Medical School and College of Pharmacy.
About Open-Angle Glaucoma
Glaucoma is a group of eye diseases that damage the optic nerve and is one of the leading causes of vision loss and blindness. Open-angle glaucoma is the most common form of glaucoma.
The eye continuously produces a fluid, called the aqueous (or aqueous humor), that must drain from the eye in order to maintain healthy eye pressure. Aqueous humor is a clear, watery fluid that flows continuously into, and out of, the anterior chamber of the eye, which is the fluid-filled space between the iris and the cornea. It is the aqueous that helps to bring nutrients to the various parts of the eye.
Aqueous fluid drains from the anterior chamber through a filtering meshwork of spongy tissue along the outer edge of the iris (the trabecular meshwork), where the iris and cornea meet, and into a series of "tubes," called Schlemm's canal, that drain the fluid out of the eye. Problems with the flow of aqueous fluid can lead to elevated pressure within the eye.
In primary open-angle glaucoma, the filtering meshwork may become blocked or may drain too slowly. If the aqueous fluid cannot flow out of the eye, or flow out quickly enough, pressure builds inside the eye and can rise to levels that may damage the optic nerve, resulting in vision loss.
Most eye care professionals define the range of normal intraocular [i.e., within the eye] pressure (IOP) as between 10 and 21 mm Hg [i.e., millimeters of mercury, which is a pressure measurement]. Most persons with glaucoma have an IOP measurement of greater than 21 mm Hg.
Latanoprost and Prostaglandin Analogues
Prostaglandin is a naturally-occurring blood protein that can lower intraocular pressure, in addition to having many other therapeutic effects. Analogue, or "analogous," means that the drug is comparable, or similar, to prostaglandin, but has a slightly different chemical composition.
Thus, prostaglandin analogues (PGAs) are drugs that are used in the treatment of open-angle glaucoma or ocular hypertension. At specific dosages, they lower intraocular pressure by increasing the outflow of aqueous humor from the eye. Some of the more common PGAs include latanoprost, travoprost, and bimatoprost.
Vision Loss from Glaucoma
Glaucoma results in peripheral (or side) vision loss initially, and the effect as this field loss progresses is like looking through a tube or into a narrow tunnel. This constricted "tunnel vision" effect makes it difficult to walk without bumping into objects that are off to the side, near the head, or at foot level.
A living room viewed through a constricted visual field.
Source: Making Life More Livable. Used with permission.
Glaucoma is an especially dangerous eye condition because most people do not experience any symptoms or early warning signs at the onset. Glaucoma can be treated, but it is not curable. The damage to the optic nerve from glaucoma cannot be reversed.
About the Research
Excerpted from With generic drugs, eye patients are more likely to take medicine as directed, research finds from the University of Michigan Health System News:
When patients with glaucoma switched from a brand name drug to its generic counterpart, they were more likely to take their medication as directed, compared to those who remained on the brand-name drug.
Researchers at the University of Michigan (U-M) Kellogg Eye Center and College of Pharmacy studied medication adherence rates 18 months before and after the first generic prostaglandin analogue (PGA) glaucoma drug became available in March 2011.
Although failing to take glaucoma medication as prescribed can result in loss of vision or even blindness, many patients struggle with adherence, says [study author] Joshua Stein, M.D., M.S., glaucoma specialist and health services researcher at the U-M Kellogg Eye Center. Among the barriers, eye drops can be difficult to use, medication regimens may be complicated, and patients may not understand the consequences of poor adherence.
The study suggests that the high cost of co-pays for brand name drugs is a deterrent. "Some of my patients take as many as three or four different classes of these medications, and a number end up paying as much as $100 out-of-pocket every month for their medication," says Stein.
The report drew on a nationwide healthcare claims database to study 8,427 patients with open-angle glaucoma who were 40 years and older and were taking PGAs, one of the most commonly prescribed class of drugs for glaucoma. All patients in the study had health insurance.
Stein and colleagues found that patients who remained on brand name drugs were 39 percent more likely to experience a decline in adherence compared to those who switched to the newly-available generic drug latanoprost. The researchers cited several factors associated with improved adherence rates, including the use of the generic drug once it became available and lower co-pays after the generic drug became available.
Stein observed that a sizeable group of patients—612 individuals or 7.3 percent of the study group—simply discontinued use of treatment altogether at the time the generic drug became available.
"If clinicians suspect that a patient is struggling with medication adherence, it may be a good idea to switch them from a brand name to a generic drug," advises Stein. He also encourages patients to ask their doctors if a generic alternative is available and appropriate for their circumstances.
More about the Research from Ophthalmology
From the article abstract:
Purpose: To assess possible changes in medication adherence to prostaglandin analog (PGA) regimens among patients with open-angle glaucoma (OAG) after the initial introduction of generic PGAs.
Participants: Patients older than 40 years with OAG continuously enrolled in a nationwide managed-care network during 2009–2012 who used PGAs.
Methods: Mean adherence rates were calculated for topical PGA use during the 18 months before the introduction of generic latanoprost (September 2009–February 2011) and the 18 months after generic latanoprost became available (July 2011–December 2012). The rates were compared between persons who continued to use brand-name PGAs once generic latanoprost became available and others who switched to generic latanoprost.
Results: A total of 8427 patients met the study eligibility criteria. Compared with persons switching to generic latanoprost, patients who continued taking brand name PGAs were 28% less likely to have improved adherence and 39% more likely to have reduced adherence.
Improved adherence after the generic drug's introduction was also associated with higher monthly medication co-pay in the pre-generic period, lower co-pay after introduction of the generic drug, and black race.
Six-hundred twelve patients (7.3%) discontinued all anti-glaucoma interventions when generic latanoprost became available.
Conclusions: Given that cost can significantly deter adherence, switching patients to generic medications may help improve patients' drug-regimen adherence. Ophthalmologists should work with insurers and pharmacists to prevent … discontinuation of use as generic forms of other PGA agents become available.
by Maureen Duffy
Researchers from Louisiana State University in New Orleans have discovered previously unknown gene interactions that are common to ischemic stroke [i.e., a stroke in which blood flow to a part of the brain is blocked] and age-related macular degeneration (AMD).
According to the research team, these gene interactions "make definitive decisions about whether a retina or brain cell will survive or die when threatened with disease onset" and thus could possibly prevent vision loss from AMD and promote recovery from a stroke.
Study author Dr. Nicolas Bazan states that "studying the eye and the brain might hold the key to creating therapeutic solutions for blindness, stroke, and other seemingly unrelated conditions associated with the central nervous system."
From Cell Death & Differentiation
This neuroscience-based research has been published in the January 30, 2015 advance online edition of Cell Death & Differentiation, a peer-reviewed academic journal from Nature Publishing Group devoted to cell biology, molecular biology, and biochemistry. The authors are J. M. Calandria, A. Asatryan, V. Balaszczuk, E. J. Knott, B. K. Jun, P. K. Mukherjee, L. Belayev, and N. G. Bazan from the Neuroscience Center of Excellence, School of Medicine, Louisiana State University (LSU) Health Sciences Center in New Orleans.
About Age-Related Macular Degeneration
Age-related macular degeneration (AMD) is a gradual, progressive, painless deterioration of the macula, the small sensitive area in the center of the retina that provides clear central vision. It is the leading cause of vision loss for people aged 60 and older in the United States. According to the American Academy of Ophthalmology, 10-15 million individuals have AMD. Approximately 85-90% of affected persons have the "dry" type of AMD; 10-15% have the "wet" type.
Dry Macular Degeneration
The dry (also called atrophic) type of AMD affects approximately 85-90% of individuals with AMD. Its cause is unknown, it tends to progress more slowly than the wet type, and there is not – as of yet – an approved treatment or cure. "Atrophy" refers to the degeneration of cells in a portion of the body; in this case, the cell degeneration occurs in the retina.
In dry age-related macular degeneration, small white or yellowish deposits, called drusen, form on the retina, in the macula, causing it to deteriorate or degenerate over time.
A retina with drusen
Drusen are the hallmark of dry AMD. These small yellow deposits beneath the retina are a buildup of waste materials, composed of cholesterol, protein, and fats. Typically, when drusen first form, they do not cause vision loss; they are, however, a risk factor for progressing to vision loss.
Wet (Neovascular) Macular Degeneration
In wet, or exudative, macular degeneration (AMD), the choroid (a part of the eye containing blood vessels that nourish the retina) begins to sprout abnormal new blood vessels that develop into a cluster under the macula, called choroidal neovascularization (neo = new; vascular = blood vessels).
The macula is the part of the retina that provides the clearest central vision. Because these new blood vessels are abnormal, they tend to break, bleed, and leak fluid under the macula, causing it to lift up and pull away from its base. This damages the fragile photoreceptor cells, which sense and receive light, resulting in a rapid and severe loss of central vision.
About the Research
Excerpted from LSU Health New Orleans makes discovery key to preventing blindness and stroke devastation, via EurekAlert! Science News:
"During the last few years, [our] laboratory has been immersed in studying gene regulation," [study author] Dr. Nicolas Bazan says. "We have uncovered a novel control that makes definitive decisions about whether a retina or brain cell will survive or die when threatened with disease onset. The gene mechanism that we discovered is the interplay of two genes turned on by the messenger Neuroprotectin D1 (NPD1)."
Age-related macular degeneration (AMD) is a devastating disease that targets the retina of [elderly persons] and destroys cells in charge of receiving photons and transferring light signals to the brain for decoding. The causal mechanisms of this disease remain elusive. The retinal pigment epithelium (RPE) is a single layer of cells that accomplishes multiple functions, such as providing survival molecules that prevent photoreceptors from dying.
[Editor's note: The retinal pigment epithelium (RPE) is a specialized retinal tissue that plays a critical role in maintaining the equilibrium of all retinal processes. It is the pigmented layer of the retina, containing the deepest cells of the retina.]
The research team worked with human RPE cells and an experimental model of ischemic stroke. They discovered novel mechanisms in cells with the ability to activate pathways that cross-talk one to another and then assemble consolidated responses that decide cell fate.
The researchers found that NPD1, the cross-talk messenger, is produced on-demand in the brain and retina and that it [activates] a network of positive signals essential for the well-being of vision and cognition.
They showed that NDP1 [activity] governs key gene interactions decisive in cell survival when threatened by disease or injury, demonstrating that NPD1 protects photoreceptors and also promotes neurological recovery from the most frequent form of stroke in humans.
VisionAware will continue to report the results of this – and related – neurologically-based macular degeneration research as they become available.
by Maureen Duffy
Researchers at Anglia Ruskin University in the United Kingdom are attempting to develop an alternative to the traditional – and widely used – audio description techniques for blind and visually impaired filmgoers.
The research team's long-term goal is to provide a more immersive, inclusive, and entertaining film experience as they explore ways to tell a story on film without the need for visual elements or an audio description track. The proposed format, called "audio film," focuses on innovative sound design techniques and the creative use of surround sound instead of a conventional audio description soundtrack.
The foundation for this innovative audio research, entitled The Design of an Audio Film: Portraying Story, Action, and Interaction through Sound, was initially reported by Dr. Lopez and Sandra Pauletto, Ph.D. in the Winter 2009 edition of The Journal of Music and Meaning (JMM). JMM is an online peer-reviewed journal for multidisciplinary research that challenges the conceptions of music and musical phenomena.
What is Audio Description?
From the American Council of the Blind Audio Description Project:
Audio Description involves the accessibility of the visual images of theater, television, movies, and other art forms for people who are blind, have low vision, or who are otherwise visually impaired. It is a narration service (provided at no additional charge to the patron) that attempts to describe what the sighted person takes for granted – those images that a person who is blind or visually impaired formerly could only experience through the whispered asides from a sighted companion.
In theaters, in museums, and accompanying television, film, and video presentations, Audio Description is commentary and narration which guides the listener through the presentation with concise, objective descriptions of new scenes, settings, costumes, body language, and "sight gags," all slipped in between portions of dialogue or songs.
About "Sound Film" Audio Research
Excerpted from New research project makes sound sense: Anglia Ruskin expert designs alternative to audio description for people with sight loss, via Anglia Ruskin University:
An alternative to traditional audio description, which is added to TV and film for visually impaired audiences, is being developed by an audio expert at Anglia Ruskin University.
Dr. Mariana Lopez, a researcher at Anglia Ruskin's Cultures of the Digital Economy (CoDE) research institute, is carrying out a pilot study to explore how a story can be told without the need for visual elements or an audio description track.
By focusing on new sound design techniques and the creative use of surround sound, Dr Lopez hopes the format – called "audio film" – will become a standard part of the filmmaking process and eventually both sighted and visually impaired audiences will enjoy the same soundtrack.
Sound effects are used both to represent actions and as "soundmarks" to help the listeners identify the different spaces in the narrative. Artificial reverberation is employed to provide each space with a characteristic sound, and surround sound is used to suggest the layout of the spaces as well as indicate the movement of the characters.
Her prototype has been tested with the collaboration of volunteers with sight loss at Anglia Ruskin's Digital Performance Lab. Initial trials have been successful, with the majority of participants recognizing all key plot elements and indicating that the story was easy to follow. Importantly, they also found the experience to be entertaining.
Says Dr. Lopez, "One of the problems with traditional audio description is that it is not part of the creative process, which means that the interpretation of the film provided in the audio described track does not necessarily represent the artistic vision of the filmmaker."
"This study investigates ways in which audio descriptions could be incorporated into the production and post-production workflows used in film and television. My aim is to create an enhanced version of audio description that allows both sighted and visually impaired audiences to experience the same soundtrack and, as a result, bridge the gap between the two and encourage social inclusivity."
More about the Original "Sound Film" Audio Research from the Journal of Music and Meaning
From The Design of an Audio Film: Portraying Story, Action, and Interaction through Sound (with full version available online):
Film, television, theater performances and museum tours use audio description to enable visually impaired people to access these forms of art. The inclusion of these descriptions has as a consequence, however, that visually impaired audiences cannot access the work directly; they have to rely on a describer.
The aim of this project was to design an alternative to audio description for films… In this project the term "audio film" was chosen for two main reasons: firstly, because the final work is to be experienced in a cinema environment, and, secondly, because certain elements of the filmmaking process might be adapted for the conveyance of a story through sound, creating an experience equivalent to the cinematic experience.
A cinema in particular has very distinct sound characteristics: it is acoustically isolated from the sonic world that surrounds it, the sound reproduction is conveyed in surround through high quality speakers with a wide dynamic range and frequency spectrum. The degree to which the environment provides acoustic immersion plays a fundamental role in how well the film captivates the spectator.
The concept and design of an audio film is of great interest for two related research areas: auditory displays and sonic interaction design.
Auditory displays focus on the study of how information (data, messages, feedback, etc.) can be portrayed through – usually – non-speech sound. Sonic interaction design concentrates on how sound can be designed to portray interactions between humans and/or objects in an informative way.
In both research areas the designer needs to address two very important aspects: the informative aspect and the aesthetic/appropriateness aspect. These are the same challenges faced by the designer of an audio film.
In an audio film the sounds (ambiences, sound effects, sounds of actions, vocal sounds, music, etc.) need to be informative so that the storytelling is effectively portrayed. Strategies are found to either use or overcome the ambiguities in meaning of non-speech sound.
Moreover, to maintain audience engagement, the aesthetic aspect of sound is considered in depth. One major application of an audio film is to provide an alternative to audio description.
But There Is More Research in This Area!
Although Dr. Lopez states that "One of the problems with traditional audio description is that it is not part of the creative process, which means that the interpretation of the film provided in the audio described track does not necessarily represent the artistic vision of the filmmaker," two audio description research projects – in the United Kingdom and Central Europe – dispute this view.
Ongoing research supporting both projects has been published in the Journal of Visual Impairment & Blindness (JVIB), the international, interdisciplinary journal of record on blindness and visual impairment. [Full disclosure: As a longtime editor at JVIB, I managed both of the following articles.]
The first project, entitled Auteur Description: From the Director's Creative Vision to Audio Description, was published in the September-October 2013 edition of JVIB. Author Agnieszka Szarkowska, Ph.D., from the Institute of Applied Linguistics at the University of Warsaw, Poland, describes her innovative method for representing and incorporating the artistic vision of the filmmaker:
I present a new type of Audio Description (AD) for auteur and artistic films: auteur description, which incorporates the director's creative vision in the AD script through the use of a screenplay (or other available materials, such as interviews and reviews) and thus gives the audio describer the artistic license to depart from the dictate of objectivism. The main function of auteur description is to immerse spectators who are blind or have low vision in the story world created by the film's director.
Auteur description differs from conventional AD in the way the "who, what, where, and how" of the film are described. Departing from the notion of objective description, it eagerly embraces vivid and emotional language. The script can include additional information on the characters and their emotions, actions, and settings that are not necessarily visible on the screen, but are important from the point of view of the director and, as such, are included in the screenplay.
The second project, entitled Could Audio-Described Films Benefit from Audio Introductions? An Audience Response Study, was published in the July-August 2013 edition of JVIB. Authors Pablo Romero-Fresco, Ph.D. and Louise Fryer, M.Sc., from the University of Roehampton and Goldsmith's College in London, describe their development of audio introductions (AIs) for Slumdog Millionaire and Man on Wire:
Each audio introduction (AI) comprised 10 minutes of continuous description incorporating information about the film's visual style, fuller descriptions of characters and settings, a brief synopsis, and cast and production details. The AIs were tested with participants who are blind and have low vision.
Twenty-four visually impaired volunteers listened to the AIs before or after watching the films with audio description (AD), and gave feedback about their experience. Most participants felt the AIs helped bring the films to life and made them easier to follow. The majority of participants wanted AIs for other films.
AD guidelines discourage describers from mentioning camera work, yet most participants reported that this information in the AI was not too technical, and that the proportion of the AI devoted to visual style was about right. Only a minority felt that the AIs "told me things I could find out for myself." This suggests that access to screen media for people with a visual impairment can be enhanced by additional cinematic and other visual information.
VisionAware will continue to provide updates on audio description research as they become available.
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