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5 Lessons from a Blind Pioneer: Fanny Crosby's Story

Fanny Crosby woman in Victorian dress with text 5 Lessons from a Blind Pioneer

While you are probably familiar with Helen Keller and some of her achievements, do you know about Fanny Crosby?

Fanny, whose formal name was Frances Jane van Alstyne (nee Crosby), preceded Helen Keller by about 60 years, living between 1820 and 1915. Like Helen, Fanny was well-known during her lifetime. Similarly, she left a lasting legacy worth remembering. Both women were blind pioneers with much to teach us.

By looking back, we can gain inspiration and insights from Fanny, who proved to be a powerful and positive role model. In retrospect, we can see five aspects that contributed to her success. They are: the power of attitude; the power of faith; the power of education; the power of missions and advocacy, and the power of legacy.

The Power of Attitude

Fanny is best known as America's most prolific hymn writer, having composed over 8,000 hymns! She also established herself as a poet, mission worker, teacher, and lyricist. One of her first recorded poems, composed at age 8, shows her determination to keep a positive attitude despite the vision loss she suffered as an infant.

"Oh, what a happy soul I am, Although I cannot see! I am resolved that in this world Contented I will be."

Fanny’s father died early in her life, forcing her mother to work as a maid in order to provide for them.

Fanny’s grandmother, who raised her, was a major influence in her life. Her grandmother encouraged her to work to the best of her abilities and not to view herself as limited. Fanny carried that resourceful attitude throughout her 94 years of living.

As was common practice in her time, Fanny's grandmother taught from the Bible. The child demonstrated a remarkable memory and was said to have memorized five chapters of Scripture per week. She could recite the gospels, as well as many of the psalms and proverbs, chapter and verse. Obviously, the practice not only strengthened her mind and attitude, but also her faith.

The Power of Faith

The Christian faith was central to Fanny’s life and work. She poured out her heart writing hymns, many of which are still sung today, nearly 200 years after her birth. Songs such as “Blessed Assurance” and “To God be the Glory” are treasured classics in many denominations.

As a Christian, Fanny understood the importance of looking forward. When a preacher once remarked that it was a pity Fanny could not see because she had been given so many other gifts, Fanny responded:

“Do you know that if at birth I had been able to make one petition, it would have been that I was born blind? Because when I get to heaven, the first face that shall ever gladden my sight will be that of my Savior.”

What an outlook! By seeing the larger view of life, Fanny did not become bogged down by her physical challenges. She lived with purpose, anticipating what was to come.

In time, a formal education would be added to the foundation laid by Fanny’s grandmother. Fanny made a life-changing move at age 14.

The Power of Education

In 1835, Fanny was accepted as a student to the recently established New York Institute for the Education for the Blind. (The school is still in existence today, but has changed its name to the New York Institute for Special Education.)

Fanny spent 35 years at the school, first as a student and then as a teacher. She often entertained guests with her poetry and songs. Fanny, who played several instruments, represented the school as she traveled around the country performing and raising awareness of education for the blind.

Fanny’s role at the school gave her the chance to make important connections. United States President Grover Cleveland taught at the school before his political career. He and Fanny became friends, and Fanny proved to be very patriotic. She composed songs in support of the Union cause during the Civil War. Even schoolchildren knew Fanny’s name, because they sang her songs during the national conflict.

Fanny’s influence spread far and wide. Closer to home, she reached out to those in poverty in the nearby Bowery district of New York City.

The Power of Missions and Advocacy

The slum conditions of New York City in Fanny’s lifetime were abysmal. Fanny herself lived in a poor area of town, and although she was a well-known songwriter and speaker, she chose to dedicate her later years to helping the poor.

Her passion became one of assisting immigrants by donating the proceeds from her writing and speaking to ministry organizations in New York City. She and her husband, Alexander van Alstyne, Jr., organized concerts and created new music and poetry to mark special occasions.

As an advocate for education of the blind, Fanny spoke before Congress in 1846 as part of a delegation from existing institutions in Boston, Philadelphia, and New York. Fanny demonstrated to the lawmakers that educating the blind was a useful and worthwhile undertaking. The delegation’s goal was to establish institutions for educating the blind in every state.

The Power of Legacy

Fanny’s earliest poem was a mere inkling of the extensive writing to come. She left behind thousands of poems and songs, which impacted countless lives. Fanny lived long and lived well. One biographer, Bernard Ruffin, had this to say about Fanny’s positive attitude:

“Fanny’s lifetime had spanned many changes in America. She had seen the invention of the telephone as well as the telegraph, steam engine, phonograph, motion picture, bicycle, typewriter, x-ray, elevator, sewing machine, anesthetics, mower, submarine, automobile, airplane and radio. She did not belong to that class of people who looking back over the years think the old days were better than our own. She watched with wonder and great interest the developments of a lifetime and had no great criticism for modern inventions.”

And while watching life all around her, Fanny contributed her own special talents. She furthered the cause of blind education, championed her faith, advocated for the poor, and paved the way for many of us today.


    Instant Pot: A Tool for the Blind or Visually Impaired Cook

    Instant Pot surrounded by various kitchen tools, cutting board

    The Instant Pot, a Magnificent Obsession

    By Jeannie Johnson

    This would make an excellent Mother's Day present. Here are some other great Mother's Day gift ideas!

    The Instant Pot is one of the latest cooking crazes, and with good reason!

    Actually, it is just one of many brands of a small kitchen appliance called a multicooker, a single product that can perform the jobs of many. The main function that really has people talking is an old idea made new and improved, pressure cooking. The Instant Pot has ten built-in safety features so, for instance, your stew won’t end up on your ceiling! It consists of a base that houses the electronics, a liner that fits inside the base and holds whatever is being prepared, and the lid.

    Different Models and Accessibility Features

    While there are at least 5 different models of Instant Pots, the Lux and Duo series seem to have the most blind/visually impaired-friendly controls. The Duo has a better design and more functions. The Duo can be used as a pressure cooker, slow cooker, rice cooker, steamer, yogurt maker, and to saute and keep food warm. During food preparation or serving, the lid can conveniently be placed in a side handle of the base. The Duo is available in 3 qt., 6 qt., and 8 qt. sizes. The push-button controls are both tactile and audible. The Ultra series has buttons and a dial that may not be so practical for people with little or no vision. The Smart Wifi series has buttons and can also be operated through a Wifi-enabled device. Unfortunately, I have not found the Instant Pot app to be very accessible.

    There are two raised lines on the inside of the Instant Pot liner. The top one, about two thirds full, is the maximum fill line. The other, about half full, is the fill line for foods that may expand or foam during cooking, such as rice, dry beans, grains, pasta, etc. Although the Instant Pot remembers your last used settings, if, like me, you want to independently program your cooker, pressing and holding in the “cancel” button on the Duo for about 10 seconds will emit a double beep that means your cooker has returned to the default settings. This operation is not quite as easy with the Lux series, and doesn’t seem to be consistent among the different sizes.

    The liner is deep, which helps when sautéing, as the splatter is less likely to reach you. This also makes cleanup easier!

    All-in-One Preparation

    A great advantage of the Instant Pot is the all-in-one preparation. You can sauté your meat and vegetables, add your spices and liquids, then uncooked pasta, rice or beans, for example, cover, let the food cook under pressure…all in one pot with little fuss. Boil and easily peel a dozen eggs, make a healthy breakfast of steel cut oats while you get ready to go, cook several boneless, skinless chicken breasts or thighs to use in meals throughout the week, make a pot of beans without presoaking, or make comfort foods such as spaghetti with meat sauce, beef stroganoff, cashew chicken, chicken noodle soup, macaroni and cheese, pork chili verde or meatloaf and mashed potatoes. The possibilities are endless, with recipes as easy or as complicated as you like.

    Resources and Recipes

    Resources abound for learning to use your Instant Pot. There are numerous YouTube videos that are not only very descriptive, but also state all ingredients with exact amounts. There are several Instant Pot and pressure cooker cookbooks on BookShare, Audible, and Kindle. While most recipes have been written for 6 qt. models, there are books and YouTube videos specifically for the 3 qt. model (Instant Pot Mini). At least one book, The Instant Pot Bible, gives recipe variations for the 3 qt. and 8 qt. sizes.

    User manuals can be found on the web. If you decide to adapt your own recipes, remember that whatever you cook must have some thinner liquid to create steam which will bring the cooker to the needed pressure. If you use Facebook, several groups have been started for Instant Pot and pressure cooker users.

    Like many of us, you may be afraid to use your Instant Pot at first, feeling it is intimidating or overwhelming. After you unbox it--there are YouTube videos that will walk you through the process-- the first thing you should do is perform the “water test”. There are videos for that too. It’s a great confidence builder and ensures that your Instant Pot is working as it should. If you’ve never heard it, you may be startled by the loud hissing sound that is made when the pressure is manually released, so the “water test” lets you know what to expect.

    Although there is a slight learning curve, before you know it, your Instant Pot will likely become an obsession. You’ll want to get another one, accessories, and you’ll want to keep trying new recipes. Instant Pots and accessories make great gifts. It would make an excellent Mother’s Day gift! They can be purchased through shopping websites, local discount, department, and homeware stores. Go to a local store, put your hands on them, and then shop around for the best bargain. The best bargain of all will be the enjoyment of making and eating a wide variety of foods from appetizers to desserts, independently prepared in your Instant Pot!

    Image credit: Stephanie Frey / Shutterstock.com


    When the Smartphone Doesn’t Speak Your Language

    Who coined the term "smartphone?" It must have been a 12-year-old nerdy kid or a software developer that thought it would be a great idea to put a computer in the phone and take away the keyboard! "Smart," in this instance is a very relative term!

    closeup of hands touching a phone screen

    In the interest of full disclosure, this writer loves his dated Samsung Galaxy Android phone, a flat screen smartphone, so this is not a personal issue with smartphones, it’s a professional issue! For the umpteenth time in what seems like a very short while, one of the clients with whom I work went into a phone store and walked out with a new smartphone they couldn’t even make a phone call with! In several instances, these were people who were capable of using their old, reliable flip phones to make calls, navigate those dreaded numerical menus, whose "options have always recently changed." You know the routine, "Press 1 for English," "Press 2 for more choices," or "Press 0 to give up and start again..." At least one could even send a text using the predictable tactile number pad for text input. And yet, through no fault of their own, with new smartphone in hand—complete with access to the web, e-mail, messaging, movies and tv, Facebook, and you name it, the task of making a basic phone call has become so confounding on these smart pieces of glass that even those among us with decent manual dexterity, functional vision, common sense, and plenty of patience are stymied by placing a call to a family member or answering an incoming phone call!

    I just had to ask the most recent client who is going through this, "Wouldn’t it be easier on a phone with buttons on the dialing pad," she asked as she jabbed repeatedly at what she thought was the home button (which isn’t even a button but an area of the screen in the center near the lower edge). "They don’t even make them anymore," she said, poking the screen, listening to TalkBack chattering, "Back, back, back."

    The Flip Phone Still Lives

    picture of professional demonstrating flip phone to older woman

    My next stop, literally after meeting this client, was to the local cell phone store where I learned, among other things, that the flip phone is still available and is still fairly tactile. And, at least the LG B470, the model offered as the basic model for AT&T, included text to speech on the menus and for reading text messages! This phone cost $10 more than the basic Android smartphone offered with the month-to-month plan, but as the salesperson pointed out, "It’s actually a better quality phone." Right... just not as sexy these days because it has a dial pad you can feel and a couple tactile buttons!

    Just a quick look at some of the features on the phone reminded me that there wasn’t a whole lot missing from this phone compared to its less tactile counterpart. The e-mail connectivity on the flip phone and the "Mobile web" application, if memory serves me well, is probably not worth the effort. So the LG has some Internet connectivity, but that is not why you might choose one of these over a smartphone.

    The LG, like other comparable flip phone models, has a camera, voice recorder, takes videos, plays music files, offers text to speech on most menu items, and responds to some voice commands for making a call, offers hearing aid connectivity, and a mode with louder volume for users with a hearing loss. And yes, there is a tactile dialing pad with a raised mark on the number "5" for orientation. As a result, with a little bit of practice, users can make a call by pushing the numbers on the dialing pad—no flicking, swiping, or double tapping required!

    For Some They Really Are Smart

    Please don’t reach the conclusion that smartphones by virtue of their smooth surface, advanced Internet connectivity, and many applications are not fully accessible to users with vision loss. On the contrary! The introduction of the text to speech feature called VoiceOver on the Apple iPhone 10 years ago has dramatically and positively altered assistive technology on mainstream technology. TalkBack, the text to speech feature on the Android phones, often offered as the "basic" smartphone for many cell phone companies, continues to improve in usability as well. So, for the new or inexperienced user, patience and practicing the many gestures that replaced tactile buttons and keyboard shortcuts will pay off. Having a smartphone in hand and the skill to use it, puts a powerful, portable computer at your disposal, with or without sight.

    Directory Assistance Exemption

    The intent of this was not to promote AT&T or any other specific cell phone carrier or model of cell phone. It was really just to suggest that there are other options, such as a flip phone with a tactile dialing pad and buttons, that may offer all the communication features you want with less complexity. While doing the research for this blog post, I had an opportunity to verify that AT&T still offers a 411 directory assistance exemption for users with a vision impairment. While some other phone services have resorted to advertising supported Free 411, a toll-free automated directory assistance 1-800-373-3411 (800-Free 411), AT&T offers a waiver to their regular 411 service, which includes the options to ask for several listings at a time and to be connected to a number once it has been found. After completing an application, there is no charge for this service, which would ordinarily cost $1.99 per usage. Easy, inexpensive access to directory assistance also eliminates some of the need for the web access on a smartphone. To find out more about enrollment, call AT&T’s National Center for Customers with Disabilities at 866.241.6568.

    Remember There Are Alternatives to Smart Pieces of Glass

    If you’re in the market for a new cell phone or just new to mobile phones, remember there are alternatives that may be less intimidating and actually do a better job of meeting a primary need—placing a phone call quickly and efficiently. A smartphone is truly an amazing communication tool if you have the time and patience to use it, particularly if you will be using text to speech. A flip phone, too, is an amazing communication tool to make and receive calls, record a quick memo, and maintain an address book, and perhaps all the more amazing for the elegance of greater simplicity!

    Additional Information

    Using the Telephone

    Project Ray, a suite of accessible apps combined with its own, third-party launcher, the part of the Android interface that enables users to customize their device's home screen, launch mobile apps, make phone calls, and perform other tasks on Android tablets and smartphones.

    Smartphone Apps


    Two Awesome Reading Apps

    How Myopic Degeneration Affected My Vision

    Twenty-five years ago, a doctor diagnosed the little spot in the center of my vision as a retinal bleed from macular degeneration. The spot could hide a stop light when looking down the road. I was 34 years old at the time, and this has since been re-diagnosed as myopic degeneration. It gradually got worse, meaning that little spot got a bit bigger.

    At the outset I understood this might be progressive and might affect my ability to read. At the time, one of the books in my library was the complete works of Shakespeare, in one volume of the tiniest print you can imagine. The book hadn’t been opened since my last literature class as an undergraduate, but I cracked it open and started reading, wondering how long I’d be able to continue reading. Thinking my reading days might be numbered I’d better reread the classics again… crazy right?

    I knew nothing about low vision at the time; computers were just starting to appear in consumers' homes. Braille was for people who were blind, and I couldn’t even go there in my head. If I couldn’t see, I thought, I couldn’t read, and the world was quickly losing a lot of its luster for this reader!

    Things Have Changed Dramatically

    In the last 25 years, the treatments for macular degeneration and retinal bleeds like mine have much better outcomes. Also, a great many of us have computers in our pockets or wrists, we use as phones, with far more computing power than the dinosaurs we heaved into our homes in the early 90’s! In many ways, however, many individuals losing vision later in life, still experience the same fear and loss about reading—sure the technology’s improved, but how would you know unless you acquired a vision loss yourself, or had a friend or family member with one?

    Voice Dream Reader

    screen image of voice dream reader with yellow on blue background letter text

    Caption: Voice Dream Reader

    Several years ago, a reading app for iPhones and iPads came out, called Voice Dream Reader. For many low vision and blind users, the reading world changed. Over the years, using optical magnifiers, electronic video magnifiers, magnification and text to speech on computers, I managed to continue reading just about any text I needed. It often required sitting at a desk in front of a screen, and though I was always grateful for the technology that seemed to stay ahead of my vision loss, I missed books, their portability, the convenience and spontaneity of print reading.

    Voice Dream Reader was not the first app on the iOS devices to enable users to enlarge text or read text electronically. The Kindle app, Nook, iBooks, and several more all had various features to make electronic print a bit more accessible on a tablet or smartphone. Although Voice Dream Reader is very popular with readers who are blind, as well, from the beginning it felt like it was just built from the ground up with the low vision reader in mind. For those of us who don’t use a screen reader on a regular basis, it is self-voicing, so the screen reader doesn’t have to be turned on, font size can be increased to 90 point (newspaper headline size, foreground and background colors can be changed to virtually any combination, text can be highlighted as it is read…the features just go on and on.

    What really won me over, however, was the ability to highlight text, and add my own notes. Granted it is not as colorful as my old philosophy books with lofty scribbles, diagrams and lines dotting the margins, but it’s probably even better. The notes I type in with the highlighted text can be organized and read sequentially, taking those margin notes to a whole new level!

    A wide variety of documents and books can be imported into Voice Dream Reader, including web pages. For users who enjoy the classics, Project Gutenberg offers hundreds of thousands of books no longer in copyright, and can be searched and downloaded, at no cost, right through the app. For more current titles, Bookshare is probably the most extensive online library of books, and if you have any print disability, Bookshare is only $50 annually, and free if you are a student of virtually any kind. Bookshare titles are also easily searched and downloaded from within the app, and subscribers are entitled to 100 downloads monthly!

    At $9.99 the Voice Dream Reader app, available on Android or iOS, has been alone at the top of my app favorites list for years…until recently.

    Dolphin EasyReader

    Coming in second Is another reading app, Dolphin EasyReader. EasyReader is free, and available for either the iOS or Android platforms as well.

    screen shot of dolphin easy reader with text highlighted in yellow

    Caption: Dolphin Easy Reader

    EasyReader has many of the basic features of Voice Dream Reader but lacks those wonderful touches like highlighting and notes. It too is self-voicing, so the screen reader doesn’t need to be on for text to speech to work—just touch the play icon at the bottom of the screen. The font sizes are comparable to Voice Dream Reader and the text color, background and word highlighting colors can all be altered for greater contrast. Additional voices for EasyReader are $6.99 from the App Store, and $8.99 on the Android. Voice Dream Reader, on the other hand, offers several additional voices at no charge on the I-devices.

    While EasyReader doesn’t offer all the flexibility of importing file types and web pages, like Voice Dream Reader, users can import titles from Bookshare and Project Gutenberg. Readers from outside the U.S. will like the greater international library support offered on the Dolphin EasyReader, and NFB Newsline newspaper readers, will love the ability to add their Newsline account to EasyReader.

    The low vision reader searching for an alternative to large print, or some alternatives that offer more features than those traditionally found on more well-known apps like Kindle may find Voice Dream Reader or Dolphin EasyReader, great alternatives. Since both are self-voicing, the low vision user who rarely uses the screen reader will find them easy to use. Because both are very accessible to the screen readers built into iOS or Android devices, screen reader users will also find them very usable with the screen reader on.

    Until I started using Voice Dream Reader, I never imagined reading with a vision loss could ever rival the convenience and pleasure of just picking up a book or magazine and flopping down in a comfortable chair virtually anywhere. A smartphone or tablet with either Voice Dream Reader or Dolphin EasyReader installed, and a set of headphones truly rivals that pleasure today. What a relief to know that whatever happens with my vision, there will always be a convenient way to slog through classic literature again if I want to—or just focus my attention on reading what I really enjoy, instead!

    Additional Information About Reading

    Reading Apps for Booklovers

    Audio Players and Talking Books


    Luxturna, Gene Therapy and Your Inherited Retinal Disease

    A scene as it might be viewed by a person with retinitis pigmentosa.

    Caption: Scene as Viewed by Person with Retinitis Pigmentosa

    In December 2017, news broke to great fanfare that the FDA had approved the first ever gene therapy for a genetic disease. Luxturna (voretigene neparvovec-rzyl) had been proven to restore vision in people living with inherited retinal diseases. Stories about children seeing their parents’ faces for the first time and adults putting away their white canes forever were widely circulated. As a vision rehabilitation specialist, I’ve been approached by clients who ask how they too can become pioneers in the nascent field of gene therapy. It was time to look into Spark Therapeutics Inc., the company behind the research, development, and manufacturing of Luxturna, to get some answers. Dr. Paulo Falabella, M.D., Medical Affairs Ophthalmic Lead at Spark Therapeutics, helped me understand the science behind the revolutionary treatment. I also spoke to members of the Spark Therapeutics Generation Patient Services support team about the process and the cost. For those anxious to receive treatment today, my findings may disappoint. But I can say with confidence that there are many more therapies on the horizon, and Luxturna heralds a new era for those who have lost vision to inherited retinal diseases.

    Will Luxturna Work for My Particular Form of Inherited Retinal Disease?

    Quite honestly, the chances are slim. As of this post, only patients with Leber congenital amaurosis (LCA) and about 4 percent of people diagnosed with retinitis pigmentosa will qualify. Over 250 genetic mutations cause eye conditions that share the hallmarks of night blindness and field loss, but this treatment is tailored to just one specific gene—RPE65. Roughly, 1,000 to 2,000 people out of an estimated 10 million in the United States can trace their inherited retinal disease to an RPE65 gene mutation. The pool of candidates is whittled down even further as physicians must determine whether each patient has enough viable retinal cells to benefit from the therapy.

    What Exactly Is Gene Therapy?

    Genetic diseases are the result of mutations in a gene that lead to disease in specific cells. With gene therapy, a functional gene restores the health of a mutated gene. Luxturna offers gene augmentation therapy with the addition of a healthy, normal copy of the RPE65 gene, which helps retinal cells re-establish their metabolism. Unlike gene editing, no DNA is removed.

    How Does a Mutation In an RPE65 Gene Lead to Vision Loss?

    In a healthy eye, light is converted into electric signals that the brain interprets through a chemical process called the visual cycle. RPE65 is responsible for creating a protein that is integral to this process. In people with an RPE65 gene mutation, the retinal cells are unable to make the protein, blocking the visual cycle. This causes a buildup of a toxic byproduct that leads to the death of retinal cells.

    How Does Luxturna Work?

    Luxturna is delivered to the eye tissue through a subretinal injection. It contains a solution of viruses that have been engineered in the lab. The virus serves as a vehicle that ferries a healthy copy of the RPE65 gene into the retinal cells. "So instead of carrying DNA that causes disease, we 'infect' the cells in a good way," Dr. Falabella explained.

    Does Luxturna Really Improve Vision?

    Spark Therapeutics first demonstrated the effectiveness of Luxturna in clinical trials with a multi-luminance mobility test (MLMT). Participants were scored on speed and accuracy as they walked through an indoor obstacle course that simulated real-world navigational challenges like low hanging branches, steps, and other tripping hazards. Because people with the RPE65 gene mutation have difficulty traveling in low light, the course was completed under seven light conditions simulating bright daylight to the darkness of a moonless night. A year after treatment, 27 out of the 29 participants ages 4 to 44 had dramatically improved scores and most saw improvement in just 30 days.

    That was the hard science that was presented to the FDA advisory panel, but the personal stories circulating on the Internet are infinitely more compelling. Perhaps the most famous clinical trial recipient of RPE65 gene therapy is 2017 America’s Got Talent contestant Christian Guardino, who was introduced to the media as someone who was "formerly" blind.

    In March 2018, 13-year-old Jack Hogan became the first person to receive treatment following FDA approval. Just two months later, he revealed in an article published by Massachusetts Eye and Ear hospital that he is able to play outside with friends after dark for the first time.

    How Do I Find Out If RPE65 Is the Cause of My Vision Loss?

    Eye Want 2 Know is Spark's online resource for people who want to identify the gene mutation that caused their inherited retinal disease. This resource helps patients and their health care providers navigate the process of obtaining a genetic test. Eye Want 2 Know also features personal stories in Community Perspectives which highlight how genetic testing can lead to opportunities to contribute to research, prevent misdiagnoses, and connect with others who share the disease.

    Where Do I Get the Treatment and What Does the Treatment Involve?

    Patients will need to travel to one of the ten Ocular Gene Therapy Treatment Centers scattered across the US that have been approved by Spark Therapeutics. A retinal surgeon will inject a drop of Luxturna containing approximately 150 billion viruses into the eye tissue. This one-time treatment will take a week or more because the first eye will require a minimum of six days to heal before surgery on the other eye can be performed.

    Even If It Is a Long Shot, How Can I Find Out If Luxturna Would Work for Me?

    Contact Spark Therapeutics and connect with the Generation Patient Services team, which offers support from diagnosis to post-surgery follow-up. The team will connect with your physician and help you enroll you in the program. If you are found to be a candidate for Luxturna gene therapy, Generation Patient Services will orchestrate the logistics of treatment. Most importantly, the team will work with your insurance company and look for other ways to cover costs.

    How Much Does It Cost?

    You could hear the collective gasp when the sticker price of Luxturna was set at $850,000. Spark Therapeutics aimed to deflect the backlash by announcing that the company had dedicated resources to educating insurance providers about the value of gene therapy in an effort to negotiate optimal rates. Spark Therapeutics is also working with non-profit 501(c)(3) companies to find other funding streams for those on Medicaid or Medicare, which do not offer coverage, as well as for the un- and underinsured.

    High costs for treatments coming out of biotech have unleashed a mad scramble in the insurance industry to come up with strategies for reigning in costs. A rebate program based on a drug’s effectiveness is being touted as one promising out-of-the-box solution by some and mocked as a weak Band-Aid approach by critics.

    Of course, Spark Therapeutics is just one small player when it comes to the challenge of affixing a price tag to a priceless medical treatment. The biotech industry, insurance companies, and government leaders are going to need to match the creativity and innovation of the research laboratories to keep prices from hitting the stratosphere. Scientists demonstrated remarkable grit in their arduous quest for a viable gene therapy. Policymakers will need to muster an equal amount of fortitude and resolve as they wade into the rough waters of our current healthcare system.

    Will There Be a Cure for My Type of Inherited Disease in the Near Future?

    Certainly, there is hope. "Gene therapy has been around for 50 years, and this particular study that led to Luxturna had been around for 20 plus years. To cross the finish line and to bring official treatment to the public brings hope not only for patients and their families but for the research community as a whole," Dr. Falabella said.

    Developments in gene therapy and cell therapy as well were already accelerating, so this breakthrough has injected rocket fuel to that upward trajectory. Research into treatments for Choroideremia and Stargardt Disease are already underway at Spark Therapeutics. To stay abreast of cutting-edge treatments, Dr. Falabella encourages people to connect with the Foundation Fighting Blindness, a nonprofit organization with a mission to drive the research that will provide preventions, treatments, and cures for people affected by retinitis pigmentosa, Usher syndrome, and the entire spectrum of retinal degenerative diseases. The Foundation now offers My Retina Tracker, a free online registry for children and adults with inherited retinal disease as well as their family members. Qualified researchers can mine the database to support their investigations or use it to facilitate clinical trial enrollments. United States residents who are enrolled in My Retina Tracker can join the Genetic Testing Study, which offers a genetic test and associated counseling typically valued at $1200 at no cost to the participant. The Foundation Fighting Blindness anticipates funding through 2019 but, as the Genetic Testing Study is a donor-supported initiative, ongoing funding is not guaranteed.

    As patients and healthcare providers closely track developments in emerging medical treatments, I encourage everyone to participate in the public discourse about managing costs. Gene therapy was once the stuff of fantasy. But if we cannot make these therapies a reality for all, they might as well stay trapped in the realm of science fiction.

    Additional Information About Gene Therapy and a Discussion of Its Costs

    The Reality and Costs of Gene Therapy for Eye Disease

    Note: Information provided through the APH ConnectCenter is for educational and informational use. It is not intended as a substitute for professional advice or treatment. Consult your physician or other professionals as appropriate for medical, legal, financial, and related advice. APH does not endorse any particular treatment, organization, or product (other than products directly sold by APH).


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