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The Reality and Costs of Gene Therapy for Eye Disease: Who Will (or Can) Pay?

retina with diabetic retinopathy

As our readers know, VisionAware is committed to providing current and reliable information about eye and vision research that is relevant to adults and older adults, many of whom experience late-life vision loss resulting in low vision.

During the past several years, gene therapy has gained traction in the research arena and offers promise for treating (but not yet curing) a range of eye diseases, including retinitis pigmentosa, wet age-related macular degeneration, diabetic eye disease, and Leber congenital amaurosis. Competition in the gene therapy research arena is intense and development costs are extremely high.

And as the science of gene therapy continues to advance, patient-centered ethical questions also begin to arise:

  • What are the costs of gene therapy?
  • Who will pay? Are the costs of these treatments reimbursable by many insurance plans?
  • Will it be a treatment that only wealthy persons can access?

Author Jim Kozubek has addressed these ethical and financial considerations head-on, in a thoughtful, well-written essay/opinion piece in the June 26, 2017 issue of STAT News, titled Who will pay for CRISPR? (a type of gene therapy, explained below).

First, What is CRISPR?

From Meet Author Irv Arons and Learn More About Gene Therapy and Gene Editing for Eye Disease on the VisionAware blog:

Put simply, gene editing is a type of genetic engineering in which DNA (a molecule that contains each person's unique genetic code) is inserted, deleted, or replaced in a defective gene, using tiny "molecular scissors" to cut and fix the broken gene in a cell. CRISPR (or "clustered regularly interspersed short palindromic repeats") is a new gene-editing technology that is used to repair a genetic mutation responsible for retinitis pigmentosa.

In genetic science, CRISPR (pronounced "crisper") genes are known to be essential for adaptive immunity in certain bacteria and microbes, and enable the organism to respond to, and eliminate, invading genetic material.

In gene editing, CRISPR locates the target – which is the mutated gene – and Cas9 (or "CRISPR-associated gene," also called "molecular scissors") snips out the mutation. Then the two DNA ends recombine, minus the mutated (disease-causing) gene.

Gene editing is more recent and differs from gene therapy because it locates and removes or replaces "defective" genes, while gene therapy introduces a "new copy" of a gene, without removing or replacing the existing DNA.

Jim Kozubek on CRISPR Gene Therapy from STAT News

Excerpted from Who will pay for CRISPR?:

The ruckus over the CRISPR gene-editing system hides a dark reality: its high cost may make it unaffordable and questions remain whether most insurance companies will pay for it. As CRISPR begins to move forward in clinical trials, there are some signals about how it may — or may not — be received commercially. Other types of gene therapies carry a price tag that is likely to induce sticker shock. If adopted, these therapies will add striking new cost burdens to our health care system.

"The cost isn't coming down," said Mark Trusheim, director of the Massachusetts Institute of Technology's NEW Drug Development Paradigms, a think tank working on the problem of how we will pay for expensive new drugs. "Companies will say, 'We are developing these medicines, just pay us'; insurers will say, 'We can't afford it.'"

Editas Medicine plans to use CRISPR-Cas9 to treat various diseases, including Leber congenital amaurosis. "Enthusiasm is great for interventions in the eye," New York University bioethicist Arthur Caplan told me. "They permit trying one eye at a time and it is easy to tell if anything positive happens. Safety is much easier to ensure."

But in its annual report, Editas noted "significant uncertainty" on whether payers would cover the treatment. In fact, a handful of insurance companies (VantageBlue from Blue Cross Blue Shield of Rhode Island, Select Health, and VIVA Health) have issued policy documents that exclude gene therapy from coverage, a move that experts say establishes policy against paying for CRISPR-based therapeutics.

Gene Therapy from Spark Therapeutics

From New Research: Gene Therapy Restores Some Vision in Clinical Trials for Leber Congenital Amaurosis (LCA) on the VisionAware blog:

At the 2015 Annual Meeting of the American Academy of Ophthalmology, Albert M. Maguire, MD presented positive results from a Phase 3 clinical trial of a gene therapy treatment for Leber congenital amaurosis (LCA) that produced "substantial restoration of vision in patients who were progressing toward complete blindness."

Dr. Maguire presented his findings after the October 5, 2015 announcement of positive clinical trial results by Spark Therapeutics, Inc. On the basis of these trial results, Spark plans to submit their gene therapy treatment, called SPK-RPE65, to the United States Food and Drug Administration for potential approval.

Spark Therapeutics is a developer of gene therapy products for the treatment of debilitating diseases, including inherited retinal dystrophies, such as LCA. Spark's lead gene therapy candidate is for the treatment of RPE65-related blindness.

Spark was spun out of The Children's Hospital of Philadelphia (CHOP) in October 2013, along with a $50 million capital commitment. In October 2014, Spark opened their new headquarters at the University City Science Center in West Philadelphia. Spark is building on the work of CHOP's Center for Cellular and Molecular Therapeutics (CCMT), established in 2004 as a center for gene therapy translational research and manufacturing.

Jim Kozubek on Spark Therapeutics and Equitable Treatment from STAT News

Excerpted from Who will pay for CRISPR?:

Spark Therapeutics of Philadelphia is vying to bring the first gene therapy to market in the U.S. to treat a rare genetic eye disease called Leber congenital amaurosis 2. Analysts said it could cost a half-million dollars per eye. Spark's treatment is a form of traditional gene therapy, which makes use of viruses to get bits of restorative code into our cells…

The Institute for Clinical and Economic Review released a report in March stating there are 12 to 14 gene therapy candidates that are expected to be among the first for commercial approval. "With payer budgets already stretched, and reining in the costs high on the agenda, both public and private payers will likely balk at the cost of some of these gene-based treatments," the American Journal of Managed Care wrote in a reflection on the report. "Europe has the lead in approved gene therapies, and the first such drug to be approved had a launch price of $1.4 million. Can the US health care system absorb the cumulative impact of such prices, considering that 10 percent of the population has a rare condition linked to a genetic defect?"

Health care is a limited shared resource, and expensive new technologies could add pressures resulting in unequal access, especially to cancer therapies. Given the aggressive drive for money, and without new approaches in thinking, we are headed for disaster.

One of two things will happen: either we will embrace a national health care system with broad access but that severely limits expensive new drugs, gene therapies, and CRISPR-based biologics; or these treatments will be available to only the wealthiest among us who can pay for them, a dystopian vision which is perverse but perhaps more realistic considering the pressures for a return on investment.

I encourage you to read Mr. Kozubek's knowledgeable essay in its entirety. Readers: What are your thoughts on this? We'd like to hear from you!

Additional Information


Topics:
Clinical Trials
Diabetes and diabetic retinopathy
Gene Therapy
In the News
Low Vision
Macular Degeneration
Medical Updates
Personal Reflections
Retinitis Pigmentosa

Re-Imagining Health Care for the 21st Century: With Value and Access for All?

By Ann Pilewskie, AFB Public Policy Intern, guest blogger

a doctor and patient during an eye exam

Health Care. Such loaded words these days. ACA, AHCA, BCRA, Private Insurance, Medicaid, Medicare—what does all of this mean? Of course, it means different things to different people. If you are covered by your employer, generally that is a good thing. If you are covered under the Affordable Care Act (ACA), for those who never had insurance for a multitude of reasons, it is a good thing. For those whose premiums have skyrocketed, pay large co-pays, or have had to give up providers they liked, it is a bad thing. If you are on Medicare, you might not be getting everything you need to maintain your health or Medicare may suit your needs just fine. If you have Medicaid, you are one of almost 73 million Americans who receive it (Source: Key Medicaid Questions Post-Election. The Henry J. Kaiser Family Foundation, Nov 23, 2016), but, again, it may not meet all your health care needs. And who knows what the AHCA or BCRA or a revised version of either will bring us. Many Americans have concerns about both health care bills.

Let’s say you are over 65 and have reduced vision due to diabetes, macular degeneration, glaucoma, cataracts, or any number of issues that lead to visual impairment or blindness. Not only do you need Medicare and perhaps additional insurance to cover your general health, you now need a way to cover the cost of supports and services due to your vision loss.

Feedback from Older Americans with Vision Loss

picture of group of culturally diverse seniors

AFB reported feedback from older Americans and service providers concerning their experiences with vision loss. The report, "Feedback on the Experiences of Older Americans with Vision Loss: Four Topical Areas Identified in the 2015 White House Conference on Aging," was published in April 2015. In reviewing the concerns reported, I looked at health care themes and quantified them by labeling categories and simply counting the number of concerns in each category. What emerged was not really surprising to me, but it did give an indicator of where to begin to remedy concerns.

Large Themes Emerged

Each of the categories was related to the others, so as the large themes emerged, the rest of the category concerns fit neatly under one or another or both. I saw a Venn diagram (common elements represented by the areas of overlap among the circles) emerging in my mind. The two largest themes that emerged were transportation and medication management. The named concerns affect quality of life, safety, independence, and well-being.

Transportation

The "non-surprise," of course, is transportation. Transportation is often an essential piece of the puzzle for people who are visually impaired. It is also, debatably, one of the largest barriers to education, employment, housing options, and general independence for those who are blind or visually impaired.

If we could answer the transportation problem, we could probably solve more than half of the other concerns. If older citizens have been driving most of their lives and suddenly that privilege has been taken away, depression can easily set in. Their independence is automatically diminished; they have to learn how to navigate public transportation and/or para-transit, if their community even has it, or they must find someone willing to drive them and hopefully not be a burden to the driver’s time or good will. They might have to change doctors or other service providers due to their locales; they might need to schedule doctor appointments further out on their calendar so not to inconvenience drivers or schedule appointments within the framework of public transport schedules, and they might miss appointments. They might need more income to pay for new transportation/services.

As one man stated during a listening session, “I'm totally dependent on my family to get me to doctor's appointments, and it is very difficult to continually have to ask them to drive me to all of the various places I need to go. I have several other chronic health problems which require frequent visits to the doctor, procedures, or follow-ups. It is depressing to be so dependent.”

Medication Management

Medication management covered a multitude of concerns, including:

  • the need for reading devices and other technology;
  • the lack of an insurance (Medicaid, Medicare, or private payer) to cover devices or services;
  • the lack of knowledge of doctors and other service providers to the needs of older folks with visual impairment;
  • the unavailability of providers and services;
  • the expense of everything, among others.

The most common concern for managing medications had to do with the reading or misreading of labels, which ultimately affects safety in their consumption. The font of labels is often too small to read easily (although new guidelines have been developed for the size of font). The feedback also included many references to devices to read medication labels: Scrip-talk, magnifiers, a variety of other marks or textures on labels, large print—were a few of the suggestions given to access labels on medication bottles. There were also comments on the inaccessibility of electronic patient portals; the lack of providers to teach patients how to use or suggest devices; and as previously stated, the lack of knowledge by medical professionals to the supports and services for older patients with visual impairments. And the final common thread: who pays? Most private insurance, Medicare, and Medicaid do not pay for low vision technology or the providers who teach consumers how to use it.

One participant’s experience summed up the disparity in health care provisions by stating: “My insurance companies have zero coverage for approximately $20,000 in talking devices (everything from a bathroom scale to a meat thermometer) I needed as I lost my vision. They did not even cover my white cane! If I had been paralyzed, they would have coughed up money for a wheelchair, transfer equipment, etc. Why the disparity?”

Two Questions Surface as I Process This Information

  1. Why do we not even nearly subsidize the medical care and needs of older adults as we do for infants and young children? Do we value them less? Yes, Medicare and Medicaid pay for nursing homes and some other in-home services and supplies. Medicaid also pays for 40 percent of all births in the US. (Source: Vernon K. Smith, Kathleen Gifford, Eileen Ellis, and Barbara Edwards, Health Management Associates; and Robin Rudowitz, Elizabeth Hinton, Larisa Antonisse and Allison Valentine, Kaiser Commission on Medicaid and the Uninsured. Implementing Coverage and Payment Initiatives: Results from a 50-State Medicaid Budget Survey for State Fiscal Years 2016 and 2017, The Henry J. Kaiser Family Foundation, October 2016)

    Should it not then pay for health services that are typically needed as people age, i.e. vision and hearing devices and other technology and services to support independence and quality of life?

  2. Why do we not have an Individual Health Plan (IHP) that provides free, appropriate public health care and independent living supports to aging citizens who cannot financially or actually manage the supports and services they need? Of course, this is similar to the Individual Education Plan (IEP) provided for students with disabilities who qualify to receive services to access public education. As a retired Special Educator, I constantly think in terms of "Who is this student? What does she need in terms of specialized instruction and services to learn alongside her peers." Processing the health care needs of older citizens, especially those with visual impairments or blindness, I think, "Who is this person? What devices, technology, mobility instruction, transportation, advocacy, does she need to live a life of quality and well-being? Where can she access these services and who will provide them?"

There is nothing listed above that is not a provision a student with a visual impairment has the right to, by law. (Whether or not the appropriate supports and services are available is another topic altogether.) Can we make the same services and supports available, if needed, to citizens over 65? We have a mandatory age for children to enter school. Could we make available a free Health Care Service Plan, at least for those who are retired after age 65 and need specialized services? Could we also make sure we have the supports and services needed by all of our citizens with disabilities—infants, school-age children, working-age adults, and retired adults?

Just Imagine

I know I’m asking for utopia, but wouldn’t it be better than dystopia? A new kind of heath care bill—just imagine.

Future Information

21st Century Agenda on Aging and Vision Loss


Topics:
Aging
Health

Protect Amtrak: An Important Part of Our Transportation Infrastructure

Editor's Note: In our Independence Day post, we discussed the 21st Century Agenda on Aging and Vision Loss and the first goal of increasing funding for services to maximize independence for older persons with vision loss. In today's post, we cover one of the initiatives of goal three of the Agenda, the need for good and available transportation for all phases of life as noted in this quote from AFB's report related to the White House Conference on Aging:

“For me, increasing vision loss means I can't drive. I don't live near a bus line, so transportation is a huge problem. First, a colleague drove me, but our schedules weren't always the same. I had to get a part-time job to decrease the number of times I would need transportation help. That cut my income in half. I'm looking for a job I can do from home, [but] most of these jobs require computer use, which—vision-wise—is [becoming more difficult].”

Unfortunately, the administration's proposed budget makes major cuts to one of our country's mainstays for transportation—Amtrak. In the proposed budget, 225 cities across 23 states are slated to lose all passenger railway service if Congress approves the administration's budget cuts. It is critical for the VisionAware audience to understand the ramifications of these proposed cuts to many sectors of society. Under the proposed budget, all long-distance Amtrak passenger train service would lose federal support and could be discontinued. The national passenger train network would be destroyed which means it would no longer be possible to cross the United States by train.

Amtrak at Risk: Reasons Why People with Visual Impairments Need Affordable Public Transportation Services

by Max Ivey, VisionAware Peer Advisor

man sitting on train with laptop open

I was asked to write about what the potential loss of Amtrak would mean to people who are blind or visually impaired. While I will address this subject, I should mention that there is a whole host of other groups who would also be damaged by the loss of or drastic decrease in service of Amtrak. I know this because I have used Amtrak in the past, and I plan to use it again in the future. I’ve met older persons traveling to visit children and grandchildren; I’ve talked to small business owners and budding entrepreneurs who are traveling for business meetings, and I’ve heard about how people in rural areas would be isolated without this resource for traveling to neighboring towns and cities. And, yes, it would make my life and the lives of other blind people much more difficult.

Benefits of Amtrak

Less Stressful

I say this because Amtrak offers something you can’t get with planes or buses. Airports are only located in large cities. This means you have to navigate great distances between your home and the airport when leaving. It also means that your final destination may be miles from the town you want or need to visit. Also, traveling by plane has become unreasonably stressful. I cringe when I think about the long lines for security screenings that require you to be there hours before your departure and submit to invasive computer imaging or even a physical pat down. I think of harried staff and passengers acting badly, and that doesn’t include the long delays many airlines are guilty of.

Buses will get you to where you need to go, but quite often, you are looking at hours if not days to get to your destination. You are stuck in vehicles with limited seat space, and you have little or no access to the comforts of the train. You may share one bathroom among 40 or more people, and you can expect at least one layover.

Now, I should mention that my first experience with Amtrak was as one of their Amtrak writers in residence. They sent me on a wonderful trip to New York City all expenses paid and first class. I had a sleeper car and attendants waiting on me. I actually wondered what their service would feel like in business class or coach. I recently found that out when traveling to Philadelphia to give a public talk. I rode there in coach.

Comfortable Seats and Helpful Staff

I found the seats very comfortable with plenty of legroom available. The seats reclined 45 degrees and each came with a foot rest that I could raise to support my feet. Car attendants would ask me every so often if I needed anything. They were very helpful in getting me to and from the dining car, observation car, club car, and the bathrooms. They also made sure that I got on and off the train when and where I needed to be. They escorted me from the waiting area to the train platform and then assisted me on to the train and guided me to my seat. They did the reverse when I got to my stop. The two times in the six-week trip from which I recently returned when I did miss a train stop, they took care of it immediately. In one case, they put me on a train back to the correct station. In another case, they figured out that if I got off at the next station, the train I needed to connect with would pick me up there. I was told that if necessary they would hire a taxi at their expense to return me to the proper station. This is the most important part of Amtrak. It’s not just having access to over 600 towns and cities across America and Canada, it is in knowing that you are safe when traveling by train. It’s this confidence in their willingness to look out for you that makes the Amtrak system so valuable to people who are blind or visually impaired. I like to be as independent as the next person, sighted or not, but it’s a lot easier doing this when you have faith that there are people around you watching and making sure no harm comes to you.

Access to Smaller Cities

On my last trip, I went from my hometown of Houston, Texas, to Philadelphia, Pennsylvania, to Buffalo, New York, to Spartanburg, South Carolina, and back home again. Spartanburg doesn’t have an airport, so I would have had to fly into Greenville and then figured out how to cover over 30 miles to the place I needed to be if it weren't for Amtrak. As I was visiting relatives, they may have helped me reach my destination, but it would have been a hardship. That’s just one example of why Amtrak is better than flying.

Leeway with Baggage

Also, on the train, you are allowed so much more leeway with your baggage. You can carry up to two checked and two carry-on bags without paying anything extra. The bags can’t weigh more than 50 pounds, but this is still a blessing. Quite often blind people have additional equipment or devices that take up space and weight in their suitcases. On the plane, you would have to pay a steep additional fee to carry the same bags. If you need to, they will even sell you four additional bag slots for $20. I met a man on my last trip who was relocating to Florida. Instead of hiring a moving company, he left his furniture in New York and moved all of his other stuff by Amtrak.

Emotional Value

I can’t quit talking about Amtrak without mentioning the emotional value of this company/service to people who are visually impaired. I love the song "City of New Orleans" by Arlo Guthrie. He has a line, "Ride their fathers' magic carpets, made of steel," about the sons of Pullman porters and engineers. When I went to New York as a writer in residence, my eyes were opened to the possibilities. I thought, “Heck, Max, once you make it to the Houston terminal, you can go anywhere in the country. No longer do I feel trapped in my room behind my laptop screen wishing for the day when I could go meet more people face to face.” I am a self-published author, and I am now envisioning a nationwide tour to promote my next book. I’m thinking of calling it "the trains, buses, Uber, and taxi tour."

I won’t say our trains are perfect. They require you to accept a slower pace for getting to your destination. This is not a problem for me or most blind people because our loss of sight has taught us patience. I love the conversations I have had on the train. I look forward to who I will meet the next time I head out on Amtrak. I enjoy being able to get a meal, snack, cold coke or beer, etc. I love not feeling like a big dog in a small kennel. But most of all, I love knowing that I can go so many places without depending upon family, spouse, girlfriend, a paid assistant, etc. I have fun thinking about where I’m going to next. I love people telling me I am an inspiration, and it not being just about being a blind person, but for being able and willing to travel by myself anywhere in this great country I want to go to.

Taking Away Opportunities and Dreams

So, we can’t let this valuable resource go away. Even a decrease in the number of towns and cities served would be crushing to our ability to travel where we want as well as a blow to our independence and ability to be an active part of our society. It would take away so many opportunities especially for people who are on fixed incomes. It would also eliminate many people’s dreams. I’m sure I’m not the only person who visits the Amtrak site and dreams about the future. I’m sure I’m also not the only small business owner, author, speaker, coach, etc. who depends upon the access afforded by Amtrak. We need more trains and more routes, not less. If our country was truly interested in the future success of the nation, we would be building bullet trains between the major business and poetical destinations. And if we are really worried about the future of the planet, we should be building better trains and offering more accessible routes for everyone instead of developing driverless cars.

I look forward to a time when our train system in the US rivals that of the UK, China, or India. I also hope someday soon there are even more places I can go via Amtrak and via rail their sister company in Canada.

Action Steps

Now that you have read the post, consider what action steps you can take such as calling or writing your representatives and senators and letting them know the importance of Amtrak service. Another approach is reaching out to the House and Senate appropriations committees that deal with transportation and possibly the House and Senate budget committees.

Additional Articles

Budget Threatens Massive Cuts

Transportation Alternatives

Accessible Transportation

Finding Rides When You Can't Drive


Topics:
Aging
Getting Around
In the News
Low Vision
Planning for the Future
Public Policy

What Does Independence Really Mean to Older Persons Experiencing Vision Loss?

We are celebrating our independence as a nation this week. We indeed have much to celebrate as we our flag flows proud and free, and we sing our nation’s anthem (in my case slightly off key)!

the American flag

Taking this to a personal level, the VisionAware peer advisors have addressed this theme in a series on independence.

"How Independent Do You Want to Be?" Peer Advisor DeAnna Noriega raised this question saying, "the training, tools, and techniques to accomplish an independent lifestyle are all available and possible. However, the choices of what you wish to learn and what you want to do are up to you. Some of these things will depend on what you enjoy doing, what your circumstances are, and whether you wish to take back control of your life….. The degree to which you want to take control of your life is a personal decision, and there isn’t a right way to live as a visually impaired person. There is a full range of options to tailor your lifestyle to meet your needs and be as independent as you choose to be."

Peer Advisor Audrey Demmitt, R.N., took another tack in her post, "Independence Versus Interdependence." She talks about the "economy of mutual benefit," saying "independence is nice, but it can be lonely and burdensome. Interdependence defines our place in the world and gives us purpose and meaning. It anchors us and connects us to others. None of us are completely independent; while learning to maintain a level of independence once again, I also learned how to ask for help and find ways to offer help to others in this dance we call life. This economy of 'mutual benefit' has been a wonderful experience. So often I find that people really want to assist me, and there is a blessing in it for them. And just as often, it is a blessing to me to find a way to reciprocate. Asking for help can be difficult and humbling, but it connects you to others in unique ways which can enrich your life. Even sighted people need a helping hand once in a while."

Audrey and husband at Ft. Funston Beach

Roadmap to Living with Vision Loss

It's all about choice and options. Maureen Duffy, VisionAware editor, put together a roadmap to living with vision loss, excerpted from Making Life More Livable: Simple Adaptations for Living at Home After Vision Loss, the informative book she wrote and edited to help people in dealing with vision loss.

The article lays out steps to take if you lose vision from getting a thorough eye exam to having a low vision exam, if appropriate, to finding out about vision rehabilitation services and checking out benefits. The article ends with, "although a change in vision can involve difficult emotional reactions and adjustments, people who have experienced a loss of vision can continue to go about their lives and activities and remain independent in their own homes."

What Does Independence Day Really Mean in This Country for Older Persons with Vision Loss?

As you celebrate this 4th of July, think about what is important to you personally. But also think about the options you want others to have.

According to the National Health Interview Survey (2014), of all the civilian, non-institutionalized adults ages 65 and up in the U.S, 6.1 million (or 13.5 percent) experienced vision loss and 350,000 (or 0.8 percent) were blind. For the population ages 85 and up, 22.3 percent had vision loss, and 2.3 percent were blind. Although we need better data, we know from personal stories and experiences that older adults with vision loss are frequently overlooked and underserved. For example, the third step in the "Roadmap" previously referenced involves finding out about vision rehabilitation services. These are provided through state and private agencies throughout the country and are underwritten, in part by a federal program called the "Title VII, Chapter 2." Advocates working through the 21st Century Agenda on Aging and Vision Loss have developed four goals, the first of which is to increase the funding for this critical but vastly underfunded program. As indicated in the goal’s fact sheet, only 2 percent of older individuals who are eligible for this program are currently receiving services.

Think about what July 4 means to us as a nation. As the Declaration of Independence boldly states, "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness." Use these Rights. Speak out!

Related 21st Century Agenda Articles

Taking It to the Streets

Medicare Demonstration Coverage of Low Vision Act of 2017

Critical Issues for Older Persons with Vision Loss


Topics:
Aging
Personal Reflections
Public Policy

Researchers Continue to Explore the Potential of Human Echolocation and Acoustics for People with Vision Loss

Acoustical Society of America logo

Logo of the Acoustical
Society of America

Vision rehabilitation professionals, including Orientation and Mobility Specialists, Vision Rehabilitation Therapists, and Low Vision Therapists, have long been aware of the need to incorporate sensory input, including echolocation, in their instructional programs.

Human echolocation describes the ability of humans to detect objects in their environments by sensing reflected sound waves from those objects. Now it appears that acoustic scientists are also recognizing the value of sensory – specifically acoustical – input for adults with vision loss.

The Acoustics '17 Conference

At the June 2017 Acoustics '17 Boston conference, a joint meeting of the Acoustical Society of America (ASA) and the European Acoustics Association (EAA), Bo N. Shenkman, an associate professor at KTH Royal Institute of Technology in Stockholm, Sweden, presented a summary of his research in human echolocation, including training applications for persons with adult-onset or later-life vision loss.

ASA is a scientific society devoted the science and technology of sound. ASA also advocates the development of science, technology, engineering, and mathematics (STEM) research and education programs. EAA is a membership organization of 33 European countries that promotes the science of acoustics, its technologies, and its applications throughout Europe and the world.

In his presentation, titled Human echolocation in different situations and rooms, he reanalyzed his previous data and identified specific informational cues that people who are blind or visually impaired use to echolocate, concluding that "…people use not only the pitch and loudness of echoes, which is well established, but also use the timbre, especially the sharpness aspects of timbre [i.e., the quality of tone that distinguishes a particular singing voice or musical instrument.] His research also revealed that blind persons can more easily counteract the "precedence effect," a phenomenon that occurs when sounds overlap.

According to Professor Shenkman, "A better understanding of echolocation may improve methods for teaching the technique to people who have lost their sight later in life, and yield additional insights into human hearing. Eventually, I hope the research can give a result that can aid blind and visually impaired people."

What Is Echolocation?

Human echolocation describes the ability of humans to detect objects in their environments by sensing reflected sound waves from those objects. Human echolocation is similar in principle to active sonar and to the echolocation employed by some animal species, including bats and dolphins.

This ability is also used by some blind persons to navigate independently within a variety of environments by actively creating sounds (snapping the fingers, making clicking sounds with the mouth and tongue) and then interpreting the sound waves as they are reflected from nearby objects. A person trained to navigate by echolocation can accurately identify the location – and sometimes size – of nearby objects and use this information to travel independently in a variety of indoor and outdoor environments.

An interesting fact: Echolocation used to be called "facial vision" because it was believed that blind persons were somehow able to "see" and perceive objects by absorbing information through a special "mystical" facial sense. Now, of course, professionals realize that such perception is a function of hearing and, by extension, echolocation.

Maximizing Input from the Senses

VisionAware discusses echolocation as a key component of learning to maximize input from the senses and function independently with vision loss:

If you concentrate on what you are hearing, and where sounds are coming from, you will be able to gain more information about your surroundings and begin to feel safer and more comfortable. For example, try this exercise to help you locate an open doorway in your home:

  • Walk slowly down any hallway in your home.
  • As you walk, you will sense a "closed-in" feeling until you reach an open doorway.
  • At that point, you will probably experience a sense of "openness" on your left or right side, depending on which side has the open doorway.

Also, rooms that are varying sizes will sound different from one other. A bathroom, for example, is usually small and contains hard surfaces, such as tiles and porcelain that can cause sounds to bounce and "echo." A living room is larger, with rugs and soft furniture that can absorb and muffle sounds.

As you approach your entry door, especially if it is located in a foyer, you may experience a "closed in" feeling or sensation. This occurs because sounds are reflected from three very close walls. In a living room or larger space, you'll notice that sounds suddenly "fall away," since they take longer to reflect from wall to wall. The area around you will now feel more spacious and open.

Blind Persons Have Been Using Echolocation for Many Years

Although I am always interested in new echolocation research, it's important to note that many blind persons have been using echolocation, with great skill, for many years.

Ben Underwood

In 2007, Ben Underwood was featured in a People magazine profile that described his echolocation abilities. Ben was totally blind after retinal cancer claimed both of his eyes at age three.

When he was five years old, Ben discovered echolocation and learned to perceive and locate objects by making a steady stream of sounds with his tongue, then listening for echoes as they bounced off the surfaces around him. He used this skill to participate in running, rollerblading, skateboarding, basketball, and foosball. Ben died on January 19, 2009 at age 16, from the same cancer that claimed his vision.

Daniel Kish and World Access for the Blind

Daniel Kish leading hikers. Photo credit: Volker Correll for World Access for the Blind

To learn more about echolocation, I recommend contacting Daniel Kish (pictured at left, leading a group of blind hikers), the founder and president of World Access for the Blind, an organization that provides instruction in FlashSonar (echolocation), mobility, and life skills to blind youth and adults.

Daniel, who also lost his vision from retinal cancer when he was 13 months old, has developed a wide array of echolocation techniques and uses those techniques to lead "no-holds-barred" hiking, mountain biking, and wilderness expeditions. World Access for the Blind believes that recreational activities are valuable ways for blind persons to build confidence, improve their navigation skills, and fully participate in society.

Echolocation in Australia

VisionAware's Marta Fonmudeh, M.Ed., an Orientation and Mobility Specialist and Senior Practitioner with Vision Australia, writes about teaching echolocation to "Annie," a 50-year-old woman who experienced "a new way of seeing" after embracing Daniel Kish's teaching methods.

More About the Acoustics '17 Echolocation Research

Excerpted from Exploring the potential of human echolocation, via EurekAlert!:

Bo Schenkman, an associate professor at KTH Royal Institute of Technology in Stockholm, Sweden, [presented] a summary of some aspects of his work on human echolocation during Acoustics '17 Boston, the third joint meeting of the Acoustical Society of America and the European Acoustics Association being held June 25-29, in Boston, Massachusetts.

A better understanding of echolocation may improve methods for teaching the technique to people who have lost their sight later in life, and yield additional insights into human hearing. "Eventually I hope the research can give a result that can aid blind and visually impaired people," Schenkman said.

In past research, Schenkman mostly used sound recordings to probe the ability of sighted and blind individuals to detect the source of echoes. By reanalyzing previously collected data using auditory models, he identified some of the specific informational cues that visually impaired people use to echolocate.

The analysis shows that people use not only the pitch and loudness of echoes, which is well established, but that they may also use the timbre, especially the sharpness aspects of timbre.

[Editor's note: Timbre is the quality of tone that distinguishes a particular singing voice or musical instrument.]

His work shows that, on average, visually impaired people are better than sighted individuals at perceiving the sound quality of two sounds that are close together in time.

Blind people can also more easily counteract the "precedence effect," a phenomenon that occurs when sounds overlap, and a person judges the location of the sounds to be from the location of the first arriving sound, rather than from the ones that arrive later.

Human echolocation shares some similarities with animal echolocation, though people use the skill to compensate for their sight, rather than as an additional sense. For both humans and bats, there is an ideal interval to emit sounds to most effectively echolocate. Humans, however, listen for the sound as well as its echo, while most bats seem to rely on just the echo.

"It's a byproduct of our hearing system that we can use echolocation, so we're not as proficient at it as bats," Schenkman said. However, "I think one can learn much from differences between humans and bats, to compare how the systems work."

VisionAware will provide updates on this important research as they become available.

Additional Information

Daniel Kish photo credit: Volker Correll for World Access for the Blind


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