Health

World Glaucoma Day is Upon Us

This week organizations around the world are shining the spotlight on glaucoma—the second leading cause of preventable blindness worldwide. Some of the signs of glaucoma include blurred vision, nausea, headaches, and halos around bright lights. If you, or a family member, are experiencing these symptoms, you should talk with your doctor immediately.

Here at AFB, we tend to focus a lot of work on how to maintain an active, independent life with vision loss. If you've recently been diagnosed with glaucoma or another eye condition, we have a wealth of information for you and your family. On AFB Senior Site, AFB's web site dedicated to people living with age-related vision loss, you'll find helpful resources in your community, tips on adapting your home, information on how to continue your daily activities, and video testimonials from others with eye conditions like glaucoma. You'll also find information on how to continue all your favorite activities—whether it's cooking, playing golf, surfing the web, watching movies, reading, or traveling.

Though the initial diagnosis of a condition like glaucoma can feel very overwhelming, the good news is that there is so much you can continue doing. And if you have a loved one with vision loss, and you want to know how they see the world, take a look at our vision simulation video. It will help you better understand their condition.

In honor of the 2009 World Glaucoma Day, we hope everyone spreads the word about the signs of glaucoma, and what you can do to live independently if you've been diagnosed.

AFB Survey Finds Drug Labeling Puts People with Vision Loss at Serious Medical Risk

Guest Blogger, Stacy Kelly, Ed.D., COMS, Policy Research Associate

Imagine for a second how scary it would be if you had to take your medication without any idea which pill you were taking. You'd probably be pretty upset (and groggy) if you meant to take an Advil, but instead took Benadryl. For people with vision loss, not being able to easily and independently identify medication labels is a huge, and dangerous, problem.

Just yesterday, we released the results from our Access to Drug Labels Survey, conducted by our Public Policy department. The survey, part of AFB's Rx Label Enable campaign, explored the personal stories of people who had trouble reading prescription or over-the-counter medication information. The findings are alarming. One person in the survey reported being hospitalized for taking the wrong medication, others almost missed errors made by pharmacies, and many had to trust strangers to convey necessary drug information.

While there are certain methods that help people with vision loss distinguish between medications there still needs to be federal or state requirements for the format of information on prescription labels to ensure that people with vision loss can take their medications independently, effectively, and most importantly, safely.

You can find more information about the report by visiting AFB's Press Room or AFB's Policy section, where you will find the full report that includes more personal stories from respondents.

And if any of you have ever had a negative consequence from not being able to read your prescription label information, please let us know in the comments section below.

Ending the Two-Year Wait for Medicare

Guest Blogger, Stacy Kelly, Ed.D., COMS, Policy Research Associate

Yesterday was a great day on Capitol Hill! I was fortunate enough to attend a press conference yesterday morning that was held in conjunction with the Medicare Rights Center's announcement of the launch of the Coalition to End the Two-Year Wait for Medicare. AFB is a member and supporter of the Coalition, which is a group of more than 75 heath advocacy groups who want Congress to take action to end the 24-month waiting period disabled individuals under 65 must endure before they become eligible for Medicare.

While this press conference is one of the first steps in a long journey to end this wait, I think it was a huge success. The event was very well attended—in fact, it was standing room only! Congressman Gene Green [D-TX] was the main speaker at the conference. He talked about the bill he sponsored that, if passed, would end the medicare disability waiting period and he expressed his hope of including the Ending Medicare Disability Waiting Period Act in any health care reform discussion Congress holds. We also heard from people directly affected by the waiting period; they spoke of having no health insurance, being pushed to the financial brink to cover medical expenses, and in some instances being forced to declare bankruptcy. Their testimony was especially moving and brought the need for change to full focus.

Members of AFB's Public Policy Center staff are part of the Operations Committee strategically planning the course of action that the Coalition will take, so I'll be sure to keep you posted on any updates. For now, you can read more information on the Coalition in AFB's Press Room. And, I thought you might enjoy reading a little more about the two-year wait in an article from USA Today. It's a little old (it was published in April 2007), but still extremely relevant and informative. Check it out and let me know what you think in the comments section below.

AFB Senior Site Celebrates Its First Anniversary!

Just a year ago, we launched AFB Senior Site for the millions of seniors with age-related vision loss and their family and friends. With the rates of age-related eye conditions expected to double as the nation's 78 million baby boomers reach retirement age and beyond, we felt it was really important to let Americans know that people can continue to live normal, active lives with vision loss.

In this first year, we've made sure that Senior Site is the most comprehensive, informative resource on the web for people with vision loss. The response from users has been overwhelmingly positive, and we're proud that the site has helped visitors understand how they can help themselves or their loved ones. One visitor told us, "I am [73 years old] and today was diagnosed with early signs of macular degeneration. Reading about you and your method of dealing with this made me feel a lot better." We've also heard from family members seeking a better understanding of what their loved ones are experiencing, such as this comment: "Thank you for the videos and information on how to help someone with macular degeneration. My grandmother has this condition and NOW I know how she sees things."

Thank you to everyone who has made our first year a success! AFB Senior Site's second year promises to bring more great things to visitors from across the country, and the world. We're constantly updating the site with new and exciting features, such as quick tips, more informative articles on living with vision loss, videos, and more! If you or a loved one has been diagnosed with an eye condition, check back often for the resources you need to live well with vision loss.

New Guidelines Provide Medication Safety

Guest Bloggers, Judy Scott, Director, AFB Center on Vision Loss, and Pris Rodgers, Program Manager, Senior Site & Independent Living

Imagine not being able to see the labels on your medication bottles or read the accompanying prescription information from your pharmacist…it could put you at serious risk for potential misidentification or misuse of your medications. For those of us with vision loss, this is a serious concern. In January, our policy department blogged about the launch of our RX Label Enable campaign, an effort to ensure that people with vision loss have ready access to medication information, enabling them to take medications safely, effectively, and independently. Recently, some positive steps have been taken to make medication labels accessible to people who have trouble seeing. AFB and the American Society of Consultant Pharmacists Foundation (ASCPF) formed an Advisory Group to create guidelines for pharmacists. The guidelines are now final, and our hope is that pharmacists will use the tips to give consumers with vision loss ready access to the vital information on medication labeling. You can read the full set of guidelines online at www.ascpfoundation.org or you can visit the RX Label Enable section of AFB's web site for some tips for you to share right away with your pharmacist.

We are also collecting stories from consumers, family members, or friends who have had difficultly with reading prescription labels or over-the-counter medication information. I hope you will join the effort and fill out our short, informal survey in the Tell Us Your Story section of AFB's web site.

National Glaucoma Awareness Month

Since January is National Glaucoma Awareness Month, I thought I'd take a moment and let you know AFB has great resources on understanding and living with vision loss. Vision loss from glaucoma can change your life, but there are many ways to adapt and still maintain your independence. If you or someone you know is experiencing vision loss, check out AFB Senior Site for more information on simple solutions for maintaining a healthy and comfortable lifestyle.

Rx Label Enable: Calling for Accessible Medication Labels

Guest Bloggers Paul Schroeder, VP, Programs & Policy Group and Mark Richert, Esq., Director, Public Policy

We're lucky to live in an age where we have access to medications that treat everything from the common cold to more serious conditions like high blood pressure. While it's great to have access to a wide variety of medications, I'm sure you would agree that it's crucial to ensure that all consumers have a safe, effective system for organizing and identifying prescription and over-the-counter medications—what they are, what's the prescribed or recommended dosage, how often you need to take them, and what side effects might occur as a result of taking the medication. Those of us with vision loss face a problem when taking medication because of the lack of accessible medication label information. The print on labels and package inserts is typically very small, making it difficult or impossible for those of us with vision loss to read important medication information. This poses a serious public health threat for the nearly 20 million Americans currently experiencing vision loss.

In an effort to ensure that people with vision loss have access to medication information, AFB embarked on its newest campaign, Rx Label Enable. We're reaching out to consumers experiencing vision loss and their family members, policymakers, federal regulators, doctors, the pharmaceutical industry, retailers, assistive technology providers, and public and private insurers, to promote solutions, build consensus, and take action. Our hope is that through these efforts, policymakers will address this problem and develop standards to ensure that medication labels and information are accessible to individuals with vision loss.

We need to hear from you and I hope you will join the effort. If you, a family member, or friend has had trouble reading prescription or over-the-counter medication information, check out the Rx Label Enable page on our web site and fill out our short, informal survey in the Tell Us Your Story section.

Play It Safe With the Talking First Aid Kit

I think it's always important to keep safety in mind, so I thought I'd let you know about a new product from intelligentFirstAid™, the First Aid "talking" Kit. Although we haven't had the chance to try it out ourselves, it seems like a great tool for someone living with low vision to have around. The Kit includes nine injury-specific packs to help treat common injuries, including Bleeding, Head & Spine Injury, and Shock. The packs are individually labeled and color-coded, which I love because it would help someone with low vision easily distinguish the packs. The best part, though, is that with the press of a button, the audio component attached to each card provides step-by-step instructions to manage the wound. Situations often become chaotic when a loved one, an acquaintance, or even you, experiences a minor injury. With this tool, people with low vision can remain calm and have an idea of how to handle things without worrying about reading any print. Check out the intelligentFirstAid™ website to purchase the product or get more information (the site even allows you to listen to a sample of the audio component of the kit). And if you've tried the kit, let us know what you think.

¡Ojo!

Recently, we've been reading a lot about vision loss rates among Hispanics in the US—a population at higher risk for eye disease. In an effort to help Spanish speaking families who are coping with a vision loss diagnosis, we have translated our Top 10 EZ Home Eye-Deas from AFB Senior Site into Spanish. Please share these with anyone who would find them helpful.

Diez Consejos Para Las Personas Con Pérdida De Visión

1. Mantenga los cuartos con luz adecuada. La luz adecuada por todas partes es esencial para su seguridad.

2. Asegúrese de que iluminación de tarea esté disponible para hacer que las actividades cotidianas se realicen con más facilidad.

3. Use lamparillas de noche en el dormitorio, en el pasillo, en el baño, y en la cocina para que las personas con pérdida de visión puedan navegar en la oscuridad.

4. Para hacer que las escaleras sean más seguras, ponga una tira de cinta color brillante al borde de cada escalón.

5. Pinte los marcos de puerta y los interruptores de luz de un color que contraste con las paredes.

6. Corte artículos de color claro en una tabla de color oscuro. De la misma manera corte los artículos de color oscuro en una tabla de color claro.

7. Ponga los platos, cubiertos, y otros artículos culinarios en manteles individuales de color contrastante.

8. Use organizadores de píldoras con marcas en relieve o con etiquetas que "hablan" para prevenir equivocaciones serias con los medicamentos.

9. Elimine el desorden; deshágase de los artículos innecesarios y siempre devuelva sus cosas al mismo sitio.

10. Coloque los televisores para que ni la luz del sol, ni la luz eléctrica brille directamente en las pantallas.

AFB Holds Hill Briefings in Honor of Helen Keller's Birthday

Tomorrow marks the 127th anniversary of Helen Keller's birthday. To continue her important legacy, AFB will be heading to Capitol Hill to talk about health technologies for people with vision loss. Right now, blind and visually impaired people cannot easily distinguish between their medications because prescription drug labels are not available in formats such as large print, braille, or speech. In addition, lifesaving diabetes equipment such as insulin pumps, glucose meters, or blood pressure monitors are not readily available in accessible formats—despite the fact that one-third of people with diabetes experience some degree of vision loss.

With the vision loss numbers growing exponentially as boomers age, access to health technology is fast becoming a pressing public health problem. AFB will be holding two Hill briefings tomorrow to discuss solutions to these problems. The information is below. Feel free to join us if you're in the Washington, DC area.

Setting the Agenda: Access to Health Technologies for People with Vision Loss
Wednesday, June 27, 2007
124 Dirksen Senate Office Building
8:30 a.m.

Get in Touch with AFB Senior Site: A Rich Resource for Older People with Vision Loss
Wednesday, June 27, 2007
HC-7 U.S. Capitol
4:00 p.m.

AFB Releases "A Mother and Daughter Story" in Honor of Mother's Day

This Mother's Day, AFB is releasing "A Mother and Daughter Story" on YouTube. This moving video, featuring Esther Smith and her daughter Gwen (two dear friends of AFB), shows us one family's experience coping with macular degeneration. And Esther and Gwen are not alone in their experience. This story captures the feelings of many families who are facing vision loss. If you or someone you love has recently been diagnosed with an eye disease such as glaucoma, macular degeneration or cataracts, I encourage you share this video with them. We have posted it on YouTube to make it easier for you to e-mail to friends and family, or to embed on your blogs. We also have an accessible version of the video on the AFB Senior Site. Please take five minutes to watch it, and share it with others. Happy Mother's Day to all!

Diabetes... It's Not Going Away

Diabetes is a topic often covered in this blog, but I can say it's for good reason. A couple of days ago an article appeared in the NY Times that stated, "One in eight adults in New York City has diabetes, and nearly twice as many appear to be developing it." This means that there are more than "...100,000 New Yorkers with seriously out-of-control diabetes, and over 200,000 who don't even know they have diabetes..." And those high numbers extend beyond New York's borders. There are about 21 million Americans living with diabetes and about 7 million who experience some degree of vision loss. Recently, AFB Press' Journal of Visual Impairment & Blindness (JVIB) released the JVIB Special Supplement that contains an article titled, "Diabetes Management and Visual Impairment". The article contains helpful information and I encourage you to read it. Hopefully, the media will continue to cover diabetes and its related issues in an effort to raise public awareness and create positive change.

Macular Degeneration: Not Curable, but Definitely Liveable

Last week, USA Today published an article about age-related macular degeneration and some of the options available to treat the disease. The article also included some health and lifestyle tips that might help prevent older Americans from experiencing vision loss. What was missing was how people with vision loss can and do continue to live healthy and productive lives, whether it's buying a large print clock, using contrasting colors on kitchen work surfaces, or even just researching a local support group to spend some time with other people in the same situation. I know I have shared these types of tips before, but that's because I know how simple solutions can make big differences in the lives of people living with vision loss. Check out the Living with Vision Loss section on AFB's web site for more tips or feel free to pass on questions in the comments section of the blog.

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10 Tips for Family and Friends of People with Vision Loss

Guest Blogger, Priscilla Rogers, Ph.D., National Independent Living Associate.

It's National Family Caregiving Month, a time to honor family caregivers who take time out of their lives to improve the lives of family and friends. If you are a family member of someone who has vision loss, it is time to think about what you can do to provide help and support.

Here are ten tips for family and friends of people with vision loss. Please share others that come to mind:

1. Learn all you can about your relative's vision loss; different types of eye conditions affect vision in varying ways. For example, some people can see to get around but not see people's faces. Others lose their side vision but have some central vision.

2. Learn about resources, techniques and products that can help your relative continue to carry out everyday tasks and enjoyable activities independently.

3. Talk directly to the person with vision loss instead of "around" him or her.

4. Don't walk away without telling the person you are leaving.

5. Communicate verbally instead of through gestures that cannot be seen.

6. Don't move things around in the persons' home without asking.

7. Give clear and specific directions. Remember the person may not be able to see where you are pointing.

8. Identify yourself to the person. He or she may not be able to see your face and may not recognize your voice. Don't embarrass your family member of friend by making him guess who you are.

9. Ask first before helping. Expect that your relative will want to do as much as he or she can do independently.

10. Ask your relative to continue to help you as he or she always has—with babysitting, pet sitting, taxes, or a good listening ear. We all like to feel needed and having vision problems does not make a person any less capable of providing help and support.

Talking Diabetes This November

Guest Blogger, Darren Burton, National Program Associate, Technology

November is American Diabetes Month, a perfect time for me to get on my soap box and talk about the inaccessibility of the self-care devices used in managing this widespread and deadly disease. Considering the close relationship between diabetes and vision loss, a logical person might assume that these devices would be accessible and usable by people who are blind or have low vision. Unfortunately, that is not the case.

In 2002, AFB TECH reported that among over 30 blood glucose monitors on the market, only one used modern technology and was accessible to blind users. However, it cost nearly $500 more than the inaccessible monitors, and wasn't easily portable. Four years later, not much has changed in the accessibility of monitors, or other devices. Insulin pens and insulin pumps remain inaccessible, and there is only one home blood pressure monitor on the market that is fully accessible.

The good news is I am currently evaluating a promising new blood glucose monitor: the Prodigy, an inexpensive, pocket-sized monitor with integrated speech for reading test results out loud . However, it's not perfect. The Prodigy doesn't announce past test results or low battery indications and doesn't have an accessible manual.

The current state of diabetes self-care is truly unacceptable. Properly managing diabetes is a difficult task under the best of circumstances, and if you have to rely on someone else to check your blood sugar or give yourself an insulin shot, you are much less likely to succeed. I would love to hear your thoughts on the topic. Or if people have ways of getting around the inaccessibility of these devices, please share.

It's Official!

I spent this past Friday in Dallas, Texas, serving as the Master of Ceremonies for the grand opening of the AFB Center on Vision Loss. The event proved to be a great success. I felt so encouraged by the great number of attendees and the obvious strong support of the Dallas community. Congressman Pete Sessions delivered the keynote speech for the evening and he offered nothing but praise for the work of the Center and its efforts to ensure that people with vision loss can maintain independent and fulfilling lives. It was exciting to participate in an event filled with so much positive energy and I look forward to writing more about important activities taking place at the AFB Center on Vision Loss.

Diabetes is a Global Crisis

There is a very interesting article in today's New York Times titled "Modern Ways Open India's Doors to Diabetes" about the globalization of the diabetes pandemic. The article explores why, and how, diabetes has become a public health crisis in the developing world, in addition to places like the United States. Diabetes, which is known to cause blindness, amputations, and heart failure, is something we all need to take very seriously. AFB is working hard to ensure life-saving diabetes equipment is usable for people with vision loss, which is really important given the link between diabetes and blindness.

Thank you to the New York Times for giving more ink to this issue.

New book on diabetes is available in braille

For people who read braille, and just found out they have diabetes, there's a new book you should know about called My Pocket DoctorTM Diabetic Reference Guide and Journal. According to the information we received, the book is "bound to answer any questions that a newly diagnosed diabetic would ask." With diabetes on the rise, there are a lot of people looking for good resources on blood glucose testing, insulin facts, medications, diet and exercise, etc. Though we haven't yet seen a copy, it sounds like it could be useful book.

Since we're on the topic of diabetes, let's spend a second on accessible diabetes equipment. Did you know that most glucose meters, insulin pumps, blood pressure monitors—and the user manuals that accompany them—are not accessible to people with vision loss? Very few contain speech or tactile buttons, which makes it nearly impossible for people who are blind or have low vision to independently operate the equipment. This is extremely dangerous, and an urgent matter given that one-third of the more than 20 million Americans with diabetes experience vision loss. Our hope is manufactures will start paying attention and that the next generation of diabetes self-care devices will be accessible to everyone. But until that happens, people with diabetes and vision loss are in a dangerous predicament.

Diabetes in Dire Need of Dollars

I just finished reading an article on diabetes that landed on the front page of today's New York Times. This is the second time the Times has done a series on diabetes in the past six months. This shouldn't be that surprising since, "Diabetes is the only major disease with a death rate that is still rising." It is also a leading cause of blindness, which is why AFB works to ensure that the devices needed to treat the disease are accessible to people with vision loss. Much of AFB's work focuses on testing equipment, such as glucose meters and insulin pumps, but we need more effort from government and industry to prioritize accessibility of these products. This most recent article announced how the government has cut diabetes funds in this year's, and in next year's budget. There is a lot of competition for public dollars, but this is very disheartening news. We're hoping pieces like The Times' series help spread the word that diabetes funding needs more support than it currently receives.

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Medicare Agency Moves to Deny Seniors and People with Disabilities Important Low Vision Devices

This week we got word that the Medicare Agency is attempting to deny coverage of important low vision devices. AFB and other disability groups are working hard to get the word out so that we can stop the proposed ruling from taking effect. This afternoon we sent out a press release with more information, including how to submit comments to the Medicare Agency. Please take a look at it when you have a chance. We need everyone's support!

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And the "Golden Girl" Speaks

This week "Golden Girl" Betty White has been reaching out to seniors and their family members about age-related macular degeneration (AMD) and eye health. Just yesterday, she helped launch "My Eye Health: In the Wink of an Eye," a national campaign created to educate the public about AMD and the importance of early detection and treatment. Right now AMD is the leading cause of blindness in Americans over age 60, and as boomers age, more and more people are expected to experience vision loss. This campaign, sponsored by Prevent Blindness America and the Macular Degeneration Partnership, is great because it's drawing attention to an important issue that the public should know more about.

AFB has also been spending a lot of time on this issue. For example, the AFB Center on Vision Loss in Dallas has a model apartment that demonstrates many simple techniques and tools that can make it easier to move around, do chores, or keep up with hobbies. Many people don't realize that small changes like using color contrast in interior design, or installing extra lighting, can make a huge difference when trying to navigate a space. There are also a number of low-tech and high-tech devices that make cooking, or using a phone or computer, much easier. Check out our Living with Vision Loss page for more tips and information.

More talk about diabetes and vision loss

Check out this interesting column about vision loss by Dr. A. Paul Chous on the dLife web site. It's a feature in honor of National Save Your Vision Month, a campaign designed to increase awareness about eye health.

One fact that struck me in the article—especially in light of the possible funding cuts at the CDC—is that "most people with diabetes have heard that it can lead to reduced vision or blindness but, amazingly, almost 50% of people with diabetes do not get regular dilated eye exams." That's really scary, and is more reason why we need more public awareness campaigns about diabetes and vision loss.

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Funding Cuts at the CDC Could Harm Public Health Efforts

Last Tuesday Dr. Julie Gerberding, Director of the Centers for Disease Control (CDC), acknowledged that the CDC could face funding cuts in the next year, which will impact several important public health programs.

In an Atlanta Journal-Constitution article titled "Budget hides 'major cuts' in CDC funding," Dr. Gerberding recognizes the need for attention to the growing diabetes threat. Diabetic retinopathy is among the leading cause of adult blindness in the Unites States. It is a serious disease that needs serious attention, and cutting CDC resources would have terrifying ramifications. We desperately need the CDC to help us promote diabetes screening, so that people get help before they get sick. And diabetes isn't the only area that needs more funding...

We also need the CDC to support public health campaigns around vision loss. As boomers age, more and more Americans are expected to experience sight problems, and they will need resources on age-related vision loss. Let's hope Congress realizes that this is not the time to cut funding at the CDC.

"Am EYE Healthy?"

Heard anything about the "Am EYE Healthy?" campaign? It's a great campaign to "increase knowledge of eye health...to help reduce the number of Americans affected by eye disease and help improve the lives of Americans...." AFB is proud to be a non-profit partner. Given that the number of people with vision loss is expected to double over the next thirty years, we're all working to increase awareness of how people with vision loss can live full and independent lives. If you know anyone looking for information on eye health, check out www.ameyehealty.org.

New York Times Series on Diabetes

Diabetes is in the news these days and for good reason. It's a growing global health crisis that has gone under the radar for a long time. But this week, the New York Times has really drawn attention to diabetes through a series titled, "Bad Blood." It's a moving, poignant series that focuses on everything from treatment to lifestyles to healthcare. I recommend all of you read it.

As I mentioned in last week's diabetes blog post, we talk a lot about this pandemic because of its close link to vision loss. Yet despite the link, lifesaving diabetes equipment—glucose meters, insulin pumps, blood pressure monitors and the user manuals that accompany this equipment—has not been made accessible to people who are blind or have low vision. This is extremely dangerous because many diabetics need equipment with speech or tactile buttons to control their blood sugar independently. We sent a letter to the New York Times this week about the problem. I'm hoping it will get more coverage now that diabetes is in the spotlight.

Good News for People with Diabetes

A colleague of mine just sent me an article from the Washington Post titled "Strict Control Key to Taming Diabetes." It discusses a recent study published in the New England Journal of Medicine that finds diabetics who tightly control their blood sugar can significantly cut their risk of health problems, including heart disease, which kills 75 percent of people with diabetes.

We talk a lot about diabetes here becuase of its close link to vision loss. As many of you know, diabetes is the leading cause of new cases of blindness among adults aged 20-74, and much of our work has focused on making blood glucose meters, home blood pressure monitors, and insulin pumps accessible to people who are blind or have low vison.

The findings from the study really encourage an aggressive approach to controlling blood sugar levels. Take a look and pass it around to anyone you know with diabetes. Seems like a good thing to talk through with a doctor.