Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, September 15, 2009

ALS Is Front-And-Center In The New York Times Again!

This time there is an excellent article on covered technology, ALS, and common sense (and how they don't converge). People with ALS have much to contribute to the discussion of healthcare reform and healthcare delivery.

September 15, 2009

For Speech-Impaired, Insurance Fights Remedy

SAN FRANCISCO — Kara Lynn has amyotrophic lateral sclerosis, or A.L.S., which has attacked the muscles around her mouth and throat, removing her ability to speak. A couple of years ago, she spent more than $8,000 to buy a computer, approved by Medicare, that turns typed words into speech that her family, friends and doctors can hear.

Under government insurance requirements, the maker of the PC, which ran ordinary Microsoft Windows software, had to block any nonspeech functions, like sending e-mail or browsing the Web.

Dismayed by the PC’s limitations and clunky design, Ms. Lynn turned to a $300 iPhone 3G from Apple running $150 text-to-speech software. Ms. Lynn, who is 48 and lives in Poughkeepsie, N.Y., said it worked better and let her “wear her voice” around her neck while snuggling with her 5-year-old son, Aiden, who has Down syndrome.

Medicare and private health insurers decline to cover cheap devices like iPhones and netbook PCs that can help the speech-impaired, despite their usefulness and lower cost.

Instead, public and private insurers insist that, if Ms. Lynn and others like her want insurance to pay, they must spend 10 to 20 times as much for dedicated, proprietary devices that can do far less.

The logic: Insurance is supposed to cover medical devices, and smartphones or PCs can be used for nonmedical purposes, like playing video games or Web browsing.

“We would not cover the iPhones and netbooks with speech-generating software capabilities because they are useful in the absence of an illness or injury,” said Peter Ashkenaz, a spokesman for the federal Centers for Medicare and Medicaid Services. Private insurers tend to follow the government’s lead in matters of coverage. Two years ago, iPhones and netbooks barely existed, so it may not be surprising that the industry has yet to consider their role as medical devices.

But the health care system has long had trouble keeping up with Moore’s Law, the principle that computing power rapidly increases even as costs fall sharply.

Doctors must still bring a patient into their offices instead of, say, inspecting an e-mailed photo of a rash if they want most insurers to pay for the consultation. Digitizing medical records is such a vast undertaking that the government is now spending billions of dollars to jump-start it.

In the case of A.L.S., also called Lou Gehrig’s disease, advocates spent years fighting to have any speech-specific devices covered by insurance, finally succeeding in 2001.

For the millions of Americans with A.L.S., Down syndrome, autism, strokes and other speech-impairing conditions, the insurance industry’s aversion to covering mainstream devices adds to the challenges they face. Advocates say using an everyday device to communicate can ease the stigma and fear of making the adjustment.

At the same time, current policies mean that the government and private insurers may be spending unnecessary dollars on specialty machines.

Dr. Stanley E. Harris, who helps set device coverage policies for Horizon Blue Cross Blue Shield of New Jersey, said that if enough patients requested new types of devices, the insurer would study their usefulness. “We’re looking for evidence-based data to support the effectiveness of whatever is being requested,” he said.

In the meantime, people with speech disabilities have a choice: pay for a cheaper product from their own pockets, try to borrow one from a private assistance group or spend their insurer’s money on a specialty device from a company like DynaVox Mayer-Johnson or Prentke Romich.

DynaVox, a leading maker of devices for the speech-impaired, has computers that start at $8,000 and run Windows, just like 90 percent of all PCs. To meet insurance rules, DynaVox disables the general computing tools. After the insurer pays, customers can pay $50 to DynaVox to reactivate the full functions.

The proprietary devices have some special qualities. They are sturdier than typical computers and have better speakers and links to support services.

But the prices may seem hard to justify based on components alone. One $5,000 DynaVox product is essentially the speech software bundled with a two-pound keyboard that has a six-inch screen. And the manufacturers mark up standard accessories by as much as 2,000 percent. Prentke Romich, for example, charges $250 for a Bluetooth wireless adapter similar to those that cost $20 in stores.

Jim Shea, vice president for marketing at DynaVox, says his company’s prices run high because it must do a lot of custom work and research to serve a niche that mainstream companies ignore. “We are not riding the wave of consumer electronics in terms of cost,” he said. “We’re building the devices here in Pittsburgh from scratch.”

In addition, the do-it-yourself approach isn’t for everybody, he said. “You have to be somewhat savvy, get the software and set it up,” he said.

Disease experts say companies like DynaVox and Prentke Romich make many sophisticated, helpful products. Still, advocates argue, advances in computing and easy-to use speech software have opened doors to use cheap mainstream alternatives. Indeed, the price drops have made it possible for A.L.S. assistance groups to buy dozens of netbooks, install specialized software like Proloquo2Go and lend them to clients.

Betsy Caporale, a speech language pathologist in Danville, Calif., has tested various devices and software with children who have Down syndrome and autism.

“The iPhone has been a runaway success with these kids,” she said. “It takes them about 10 minutes to learn how to use the iPhone, and there is this cool factor for them.”

Ms. Lynn, from Poughkeepsie, would like to see insurers loosen their rules to accommodate general-purpose devices and give people like her more financial flexibility. Since insurers will typically cover only one device every five years, people with degenerative conditions like A.L.S. often hold off any claims until their condition worsens, and they really need an expensive specialty product that can track their eye and head movements.

Perhaps the government could set a certain dollar limit and then let patients find the products that fit their needs, Ms. Lynn suggested. “I really would like to see Medicare do away with the dedicated-device rule and the one-device limit,” she said by e-mail.

But so far, government and private insurers are not swayed. “We look at determining the effectiveness of the technology — and not the cost — first,” Mr. Harris said.

For Ms. Lynn, the iPhone, with the special software, is cheaper, more effective and essential. “Technology has become as important to me as air, food, water,” she wrote.

1 comment:

  1. Alex was two years old when he started losing his language skills as well as other developmental milestones. Months later he was diagnosed with Autism. After eighteen months of intense effort at teaching him sign language, with minimal progress, we turned to PECS (Picture Exchange Communication System) which dramatically improved his ability to communicate his wants and needs. At age five, Alex was still nonverbal and we decided to try an Augmentative Communication Device (AAC). After a lengthy wait period, Alex was evaluated and a device recommended based on his needs and abilities. Then began the lengthy process of determining who would pay the nearly $10,000 price tag. Should it be the family, private insurance, the public schools, or the Department of Developmental Disabilities? Eventually we received our device, and after the initial excitement, the limitations of the system became evident. It was cumbersome, heavy, and fragile. The pictures were not easily identifiable for Alex, as he had significant visual processing problems. While it provided another avenue of communication, it fell far short of our expectations. Talking with other parents who were using similar devices with their children, we realized that we were not alone in our frustration.

    My husband Fredi and I began to imagine what an ideal system would look like. The ideal system would be more versatile so that pictures could be customized. If desired, photographs of specific items rather than generic figures could be uploaded. The format of the pages could be altered as needed. The AAC would not be device dependent, but, instead, would be a system that could be accessed on a variety of computer operating systems. Finally, the cost would not be so prohibitive that it discourages families from trying an AAC system, and insurance companies and schools would be more willing to fund it.

    While Alex was the inspiration, my husband Fredi was the ignition for the process that developed into Alexicom Tech. After exploring the technical possibilities and becoming convinced that there was no reason why a more effective system could not be developed, he brought this idea to his friend and work associate Karen Suhm. With a Ph.D. in Physics and a background in Engineering, Karen had the skills, persistence, and ingenuity to bring the idea to its full capacity. Along with the expertise of two speech pathologists, Staci Neustadt and Marti Baio, Karen made the system user friendly and versatile. This talented group of people turned the idea of a more effective, more accessible AAC into a reality that will benefit individuals, families, schools, medical facilities, group homes and nursing homes.

    Please check out our website:

    We recently beat out DynaVox, the leader in AAC devices, to provide services to the Phoenix Union High School District Special Needs Department. A major advantage that helped win the contract is that with Alexicom Tech, there is no need to purchase additional computers. Our service is not device-based; it is internet-based but not internet dependent due to its off-line publishing capacity.

    With Alexicom we are able to use pictures that we know Alex can identify and comprehend. Many autistic children have great difficulty generalizing from the specific item that they interact with in their lives to a general picture or symbol. We can use a photograph of his dog, Kiko, or find a near exact photo of his red ball on the internet to use in his pages, rather than the generic pictures that are typically used in communication boards.

    With Alexicom we can use a more portable computer at home and in the community. At school, his communication boards are projected onto the Smartboard which empowers him to communicate more during circle time, etc.

    Alexicom Tech will continue to evolve to meet the needs of a diverse population of children and adults with communication disorders.