Redefining ‘Cured’
Redefining ‘Cured’
A spinal-cord-injury activist puts a new priority on living with—not fighting—paralysis.
By Abby Ellin | Newsweek Web Exclusive
Sep 23, 2009
Ever since 1988, wheelchairs have figured into Alan T. Brown's dreams. That was the year his neck was crushed by an ocean wave at a Club Med in Martinique. He was 20 years old, young and single and free, and in one second went from a vibrant college student to a quadriplegic, with no movement below his chest. The dreams began almost instantly, usually with the wheelchair off to one side, Brown standing nearby. "In the beginning, I was convinced I would walk again—1,000 percent," says Brown, now 42, who runs his own public-relations company in Hollywood, Fla. "My old mottos were 'There's light at the end of the tunnel' and 'Never say never.' I did think there was going to be a cure."
His dreams have changed over the past 22 years. Oh, wheelchairs still loom, but for the most part, Brown is sitting in them. It's not that he's completely abandoned the hope of ever walking again; it's just that after two decades in a seated position, he's got other issues to reckon with. He has had six major surgeries since his injury. His hemoglobin dropped from 15 to seven, and he began passing out regularly. "I'm in pain 24/7—I feel like my body's on fire," says Brown, who suffered 17 urinary-tract infections last year and a bout with a drug-resistant staph infection. "I've had so many surgeries—you have to pick your battles. How you live your life now, what you do to keep yourself going—that counts more than walking."
His attitude has changed so much, in fact, that this year he and his mother, Fran, overhauled the mission statement of the Alan T Brown Foundation to Cure Paralysis, the nonprofit the family created shortly after Brown's injury. Initially, its goal was to financially support scientific and medical research worldwide with a focus on finding a cure as quickly as possible. And while it is still fundraising today, it has turned away from the hope of an immediate cure.
It was only a few years ago that the wheelchair-bound Christopher Reeve made impassioned pleas about expanding government funding for embryonic-stem-cell research, arguing that patients like him could benefit quickly from scientists' work. But then-president George W. Bush refused to allow government funding of any research that would destroy more human embryos. Reeve died in 2004 from cardiac arrest brought on by a bedsore, a common problem for paralyzed people. And stem-cell research, while still promising, hasn't managed to make Brown and others walk again. And that has left many of the 1,275,000 Americans with spinal-cord injuries rethinking exactly what they might realistically expect in the way of a "cure."
Not that the hope of finding a cure is no longer highly appealing. It's just that the definition of "cure" has radically changed, especially among those who have been injured for more than a few years. After all, if Reeve—who swore that one day he would walk again and had millions of dollars at his disposal—was unable to do so, why would anyone else? So in the summer of 2008, the Christopher and Dana Reeve Foundation changed its slogan from "Go Forward" to "Today's Care. Tomorrow's Cure." "When we first started, our entire focus was to find a cure, to get people walking again," says Reeve Foundation president and CEO Peter Wilderhotter. "As we came to realize that since no injury is completely alike and given the complexity of the spinal cord—there will be no 'magic bullet.' " It is an argument that has raged in many disease-advocacy quarters over the years: when resources are limited, how much should you focus on making daily life better, and how much should you devote to the moonshot?
Brown realized he had to focus his own attention on combating day-to-day challenges, and not on some far-off glimmer of hope. One major battle: fighting with insurance companies, which suddenly refused to cover his nursing expenses. Although he has two insurance policies, only 10 nursing visits are allowed per year. "That's one week," he says, enraged. (His annual out-of-pocket expenses hover around $200,000.) He was tired of having his life, and the lives of his injured friends, thrown around like a "political football." Five years ago, he sued his insurance company after being told that the nurse who came to help him with his bowels and bladder would no longer be covered under his policy. Nor would the insurer pay for his physical therapy. He heard dispiriting stories of insurance companies telling patients to reuse catheters rather than pay for new ones; he knew people who were falling into financial distress because they could no longer afford to pay bills for their routine medical care, which could run as high as $250,000 a year. He says he has been fielding 50 percent more calls over the past year, compared with years past, from patients who have no idea where to turn financially, medically, and emotionally. Walking, right now, is not their top priority.
Brown is lucky enough to have some savings. But according to a study conducted by the Reeve Foundation, about a quarter of U.S. households living with some kind of paralysis have an annual household income of about $10,000 a year, on par with 7 percent of the U.S. population. With that in mind, the Reeve Foundation plans to push for health-policy changes, including ending a federal requirement mandating that disabled people wait two years before their Medicare coverage takes effect. They are also targeting insurance policies that refuse to pay for $400 wheelchair seat cushions that could prevent pressure sores. "Simply put, we need to raise and target as much as we can to find the best minds to find cures as quickly as possible," says Wilderhotter. "But if the object of our affection and attention is not those living with paralysis and their families and caregivers, then we are doing no good."
These difficulties actually arise from some good news: people with spinal-cord injuries are living longer than they were initially expected to. But that also means they are experiencing long-term infections and diseases (like the drug-resistant staph infection known as MRSA, or the skin infection cellulitis, for example) that come from being sedentary for so long. When Brown was first injured, for example, he was expected to live until 53. But he fully expects to live longer than that. He is certainly active: sky diving, scuba diving, completing two New York marathons (in his wheelchair). He goes to the gym five days a week, lifts weights three days a week, and swims up to a mile and a half every other day. "My upper body is strong as hell," he says. But as part of the first generation of people living with long-term spinal-cord injuries, Brown is a pioneer. And because no two injuries are alike, he says, "there's no road map for us. There's nothing to tell us how to eat or sleep."
Brown's tenure as a survivor has clearly shaped his changing views. "The longer you live with an injury, the more realistic you become about things in life," says Brown, a catch in his voice. "I used to say to newly injured patients that 'I'm from the Alan T Brown Foundation to Cure Paralysis and there's going to be a cure someday and we'll all be fine and laugh about this.' And then they I see them 15 years later and they say, 'Remember when you came in?' I felt like I lied to them. You come to a realization that 'this is who I am, this is my life, and I've got to make the best out of it.' I don't think people are giving up; I think people are moving on to live their lives. They're tired of waiting. We are refocusing on life, because you can't just sit around and wait."
Ironically, Brown's new realism comes at just the moment when scientists hope stem-cell research might finally take off. An article published this week in the journal Nature reports on fully paralyzed rats that were able to walk thanks to a combination of drugs and electric stimulation. Human trials are set to begin this year. President Obama signed an executive order in March to relax the previous restrictions on federal funding of human embryonic-stem-cell research. . And in January Geron, a pharmaceutical biotech company, received FDA approval to conduct the first clinical trials using human embryonic stem cells on people with spinal-cord injuries. But the trials, which were slated to begin this past summer (and are now on hold pending an additional FDA review), will be conducted on patients with brand-new injuries. Brown is actually not so disappointed by that. He has no desire to be among the first group of people to test out a "cure." "There's no way my body, after 21 years of sitting down, can suddenly handle standing up," he says. "I want to make sure they get it right before I try it out. When the time comes, I want to walk straight, not sideways or crooked."
Ultimately, Brown believes, the definition of the word "cure" needs to be rethought. So to a quadriplegic, for example, a cure might allow him the chance to feed himself, or take a shower, or recover some hand function or lower-body sensation. To a paraplegic, it might mean recovering bladder function. Brown feels like his wheelchair, called an iBot (invented by Dean Kamen of Segway fame) is a cure of sorts. "It climbs stairs; goes on sand, grass, and gravel; and reaches as high as six feet," he says. "I'm no longer the guy pulling on a guy's jacket trying to get his attention. I can talk to people at eye level."
That said, Brown also feels he's experienced a panacea in the form of his two children, ages 6 and 11. "Being a father is a huge cure. It keeps me going. That's what I live for." And then he pauses, and some of the crack in his armor shows. "My friends and I laugh about it; laughter helps," he says. "But when push comes to shove, a lot of us have our moments. Twenty-one years ago I remember hearing the word 'cure' and it was like, 'Bingo! Bring it on!' Now I'm like, 'Call me when you got it. Figure it out and let me know.' "
Find this article at
http://www.newsweek.com/id/216001
Heading Home....
So we left NJ on Thursday morning at 9:30am. We stopped at Tony Luke's in Philly to grab some food for the ride home. This was a great trip. I accomplished so much personally and for the Foundation. On a broader level, meeting with people from many organizations and institutions and networking to try figure out the best way to help people with paralysis was enlightening. I could not have done this drive without Glen (thank you), my wing man.
I had a 2pm tour at the International Center for Spinal Cord Injury Kennedy Krieger Outpatient Center (OPC) at John Hopkins. What an impressive state of the art facility! Of course, I ran into a family that the Foundation has helped and it was great to see them. I toured the facility and observed new treatments and equipment. After, I sat down with one of the doctors and discussed outpatient rehabilitation and what is available at different centers throughout the country.
Inadequate insurance coverage is still the main concern—Medicare/Medicaid. We concur that it is imperative to assist people and that the insurance should enable the spinally injured to stay in hospitals for a reasonable amount of time and also be eligible for sessions in a rehab center depending on their level of injury. This is our goal—to bring awareness about these issues and help change guidelines.
After these meetings we met Cousin Mike who was in Baltimore at the Harbour for a quick bite. He gave us 2 cases of fresh Philly pretzels to bring back to Steve Martorano. They were really good. We were back on the road at 7:30pm and drove through the night, arriving home around 10:45am. We had made great time on our return trip to Florida.
I was so glad to see everyone and to do so much the past three weeks, however, there is nothing like being home with the family and sleeping in my own bed. This might be the end of this trip, but my journey to make changes to help others is just starting, you watch. Stay tuned..........
Still Going.........
Yesterday was a day to regroup after the event. I had a great meeting with the staff of The Christopher & Dana Reeve Foundation. We have work to do but we will get it done. I am ready to push this as hard as we have to in order to make an impact and overall change for paralyzed people.
Today I have meetings in NYC for Cafe Martorano's and will see some friends. Tomorrow I start to head south with my first stop at International Center for Spinal Cord Injury Kennedy Krieger Outpatient Center (OPC)at John Hopkins.
Today I have meetings in NYC for Cafe Martorano's and will see some friends. Tomorrow I start to head south with my first stop at International Center for Spinal Cord Injury Kennedy Krieger Outpatient Center (OPC)at John Hopkins.
The ATBF Golf Event
Yesterday was an amazing day for my foundation. We had The 21st Annual John Vanbiesbrouck Celebrity Golf and Tennis Tournament at Ridgewood Country Club, it was the perfect day for golf. We honored two amazing people Mr. Dean Kamen, Founder/President DEKA Research & Development Corporation & Mr. Robin Smith, President Miami Physical Therapy Associates.
We had so many people in wheelchairs there whose lives the foundation has touched. The warmth and feeling in the room of people wanting to help even more fueled me to take my mission to help others even more. Thank you do everyone who helped yesterday such a success.
Max at camp
Today was a great day up at Max's camp. It was so good to spend time with him. I want to go back to camp.
D.C. to South Philly to N.J.
Yesterday was the wrap up of the Paralysis Task Force Meetings. We went over the suggestions from the groups the day before and made further recommendations as a group to make sure we were on target. It is unbelievable to find out from these meetings how much needs to be done for the Spinal Cord Injury and Paralysis Community in order to get people what they need to survive and have a decent quality of life.
The most upsetting piece of information I heard was that when newly injured people get hurt, they are pushed out of the hospital in 17 days on average. When I was hurt I spent over 6 months in the hospital. This is unacceptable because when a person and their family's lives change in one split second, 17 days is way too short of a time for one to try to figure out how they will move ahead and try to figure out how to live. The insurance companies could not care less about the physical,emotional and mental part of what one needs to prepare for and they only care about themselves. I am sure that a lot of good will come out of these meetings and am very honored to be involved.
Once the meetings were done we headed to Philly to meet Steve Martorano's best friend Cousin Mike. He took us to all of the classic South Philly places. We went to Jim's, Tony Luke's, Cosmi's Pastries and Pop's Water Ice. From there we shot up the Jersey Turnpike and were so glad to be done with all of the long driving until we head home.
The most upsetting piece of information I heard was that when newly injured people get hurt, they are pushed out of the hospital in 17 days on average. When I was hurt I spent over 6 months in the hospital. This is unacceptable because when a person and their family's lives change in one split second, 17 days is way too short of a time for one to try to figure out how they will move ahead and try to figure out how to live. The insurance companies could not care less about the physical,emotional and mental part of what one needs to prepare for and they only care about themselves. I am sure that a lot of good will come out of these meetings and am very honored to be involved.
Once the meetings were done we headed to Philly to meet Steve Martorano's best friend Cousin Mike. He took us to all of the classic South Philly places. We went to Jim's, Tony Luke's, Cosmi's Pastries and Pop's Water Ice. From there we shot up the Jersey Turnpike and were so glad to be done with all of the long driving until we head home.
D. C. DAY 2
Today we had great meetings for the Paralysis Task Force. We had four topics that we had break out sessions on, from the brainstorms we will make recommendations which will lead to quality of life issues and ultimately change.
At lunch myself and three other individuals in wheelchairs talked about living in a wheelchair and what quality of life means to each of us. Tomorrow we will go over everything from today's sessions. We are on the right track, stay tuned...
D.C. Day 1
Had a few meetings and took in the city a little bit. After meeting people attending Paralysis Task Force Workshop through The Christopher & Dana Reeve Foundation, I see people coming together to get people living in wheelchairs better quality of life.
I had dinner with an old friend Scott Chesney and caught up on old times and our futures.
In.D.C. for THE PARALYSIS TASK FORCE
So we had a good drive from N.C. to D.C. we arrived around 11:30pm. What a scenic drive through the Tennessee Mountains and through VA. I played co-pilot this time, The Biltmore Estate is one of the most amazing piece's of property I have ever seen. Here are some pictures of the Estate, Winery, Gardens and more.
Today is a day of meetings, conference calls and catch up. I really am excited about seeing this group work together to bring Paralysis and it's issues to the forefront and come up with a plan to help everyone who is struggling and identify our needs in order for us to live a better quality of life. Stay tuned
Today is a day of meetings, conference calls and catch up. I really am excited about seeing this group work together to bring Paralysis and it's issues to the forefront and come up with a plan to help everyone who is struggling and identify our needs in order for us to live a better quality of life. Stay tuned
Carolina...
So I drove 11 hours to Ashville straight through and made great time. It is so nice here with all of the mountains and clean air. I definitely do not miss the 95 degree heat and humidity. Today I plan on checking out the area and The Biltmore Estate and all it has http://www.biltmore.com/.
I just found out that the Newsweek story that was supposed to come out tomorrow will now come out next Monday the 27th.
I just found out that the Newsweek story that was supposed to come out tomorrow will now come out next Monday the 27th.
Daredevil on wheels takes to the sky
Daredevil on wheels takes to the sky
Alan T. Brown’s mission to improve life in a wheelchair
by Andrea Freygang
Born and raised in New York City, Alan T. Brown was 20 when his life changed forever. Down in Martinique at Club Med, Brown went swimming, not knowing a storm was brewing in the water nearby where two oceans cross, creating unusually strong undertows. When the waves came in, he was caught in an undertow, flipped upside down and heard his neck snap. Instead of learning how to follow his Orthodox parents in the biggest mitzvah of preparing bodies for burial, Brown had to figure out how to live. Now 42, Brown has dedicated his life through his public relations and marketing skills to creating a better quality of life for people living with various spinal injuries through the Alan T. Brown Foundation to Cure Paralysis. Brown, who spends his life in a wheelchair and has nine screws and two metal plates holding his head on his neck, says he never stopped working, starting with his foundation. Since the accident, Brown has married, had two kids and started his own public relations and marketing business stemming from his involvement with getting SlimFast started with celebrity endorsements. He has also worked with the Florida Marlins and has organized advertising campaigns for a number of celebrities
How did the foundation come about?
The foundation started six months after my injury. I started figuring how to get my life back together. It started off as looking for a cure, but went into outreach. You go into the hospital and help people realize there is life and everything will be ok. There are hundreds of them…and none of us ask and want our world turned upside down in ways you’d never believe.
“G-d did this for a reason and I have to carry out the mission—and not let the system take me down. It will not beat me.”
What is the focus of the foundation?
A lot of it in the beginning…was there was going to be a cure and we would get out of these things (wheelchairs), but you move beyond that. I think a cure will happen, but I don’t know about in my lifetime. I’ve had six surgeries, had to have my back fused, with two bolts and hinges holding my back together. But now it’s about a better quality of life.
How so?
I drive my own car, I skydive, scuba dive, go to the gym six days of the week, but many things I can’t do myself. I need help with everything—cutting food, pants, bathroom, hanging with my kids. But I am a whole person, and have achieved many of the goals I’ve set for myself. My main focus is whatever legislation and awareness (I can get). It’s all the same message—a cure is great, but quality of life is what needs to happen. G-d did this for a reason and I have to carry out the mission—and not let the system take me down. It will not beat me.
What needs to change?
Insurance. I had the same policy for 20 years and they switched it and I had to pay out of pocket. I need medicine, nursing care around the clock. Insurance says my wife should be my caregiver, but I can’t do that—we would be divorced. I had a new policy that included hospitalization and nursing homes only, but I’ve had friends die from that. You go there, you start to think you’re dead. We want to live—I trained to do two New York marathons. And they wouldn’t pay for supplies and gave me this huge, bulky wheelchair that cost $38,000 and I hated it. It made me feel my injury more and more. I found this I-Bot wheelchair that…can go on gravel. It’s actually an unbelievable device that made me not feel paralyzed anymore. I’m up (the chair allows him to stand) talking to people. In the PR business, you need face to face. It completely changed my life and I became a spokesperson, but they stopped production...because Medicaid and Medicare stopped paying.
So what is the next step for you?
I’ve been giving money for 20 years for a cure, but I want a roadmap to tell me and my friends how to survive. So I went to Christopher Reeves—we were friends— and told him they’re not producing this wheelchair anymore and we started a study to show that close to six million people have some disability related to paralysis and spinal cord. The cost is higher and higher, but the support in less and less. I’m going to Washington, D.C. to say why shouldn’t we be able to go to a friend’s house or go to a soccer game or shoot baskets and get up high, which that chair allowed me to do. When I went to Walter Reed (Veterans’ hospital) I saw things you wouldn’t believe. They’ll pay 80 million or billion to put a young kid into harm’s way, but they come home and can’t get a new $22,000 wheelchair.
How will you fix this?
I am on a mission right now, to share as much as I can that everyone in wheelchairs should get a fair shake. I don’t sleep well at night, but I gotta do this. I’ll keep popping into D.C. to get in faces till they understand. My mission is to make sure I take my PR expertise and sing this to everyone I can to raise awareness and get as many celebrities and athletes involved to do what I’ve got to do to make a difference, though I don’t feel like I’ve done even close to enough.
“My mission is to make sure I take my PR expertise and sing this to everyone I can to raise awareness and get as many celebrities and athletes involved to do
what I’ve got to do to make a difference.”
How has your Jewish faith helped?
I sometimes ask why, but my religion has kept me grounded. G-d did this for a reason so I’m just going to go with it. I thank G-d for people who help me, the people who are around that care for me. I take my whole background, growing up in an Orthodox Jewish home (since I) grew up to be somebody to help. It has helped since day one and a lot more now. There are a lot more people, a lot more problems and the system is harder and harder. But G-d gives me the strength to move forward to help these people and that’s what I’m going to do.
The Alan T. Brown Foundation is a not-for-profit foundation, established in 1988 to support scientific and medical research, and has recently focused on quality of life issues. The foundation regularly hosts events, primarily in New York, but Brown is based in Hollywood where he runs PrimeTime Public Relations & Marketing. Visit www.atbf.org for more information on the foundation and to find out about upcoming events or ways to get involved. Visit www.ptprm.com to learn more about Brown’s marketing company.
Paralyzed man leads charge for healthcare reform
BY SHANNON PEASE
Special to The Miami Herald
In pushing through the adversity of everyday life, Alan T. Brown wants to call attention to himself and more than a million others who live with spinal cord injuries.
His aim is to raise awareness of the prevalence of the condition and, ultimately, foster health reform.
His life changed forever on Jan. 2, 1988, when a simple act of floating in the surf in Martinique took a horrible turn. The undertow flipped the then-20-year-old over, smashing his head into the hard sand and leaving him paralyzed.
''Your life changes in one second,'' said Brown, now 42 and a quadriplegic confined to a wheelchair.
''Your life changes the second you break your neck,'' said Brown, a Hollywood resident. ``And there is no road map.''
Since then, each day has been a new challenge for Brown, who is now married and has two sons. Medically, he has undergone six surgeries and has had nine screws and six plates inserted to fuse his head to his neck.
Financially, the cost of wheelchairs, healthcare and adapters for automobiles and other needs can be devastating.
''People don't realize, I don't wake up to an alarm clock every day. I wake up to a nurse,'' Brown said, adding that visiting-nurse expenses are not reimbursed by his private insurance policy, and are paid out of pocket.
According to a recent study initiated by the Christopher & Dana Reeve Foundation, about 1.3 Americans live with spinal cord injuries, a number five times higher than earlier estimated.
The study also found that six million people live with some sort of paralysis, which includes conditions such as stroke, cerebral palsy and multiple sclerosis.
''You are talking about a large population that was under-noticed,'' said Brown who stays active by working out at a gym and scuba diving.
His plan is to increase awareness and spur better funding for services and medical equipment necessary for everyday life. Brown said his insurance reimbursement for such necessities has decreased considerably over the years.
''I plan on doing whatever I have to do to let people know what we are going through and we need to get some help,'' Brown said. He said that includes a lack of insurance, services and community awareness.
Brown, who owns PrimeTime Public Relations & Marketing in Hollywood, has made frequent treks to Washington, D.C., where he has given a speech at a Christopher & Dana Reeve Foundation event, attended media programs to discuss issues, and visited amputee veterans at the Walter Reed Army Medical Center.
He has launched the Alan T. Brown Foundation to Cure Paralysis, originally to find a cure, but now he said he has changed direction to focus on quality of life.
''It's getting harder and harder to live. I know the economy is bad, but this isn't the economy, this is our life,'' Brown said. ``We need to start coming together and organizing to get people to make a difference.''
Marketing executive makes a personal pitch for himself and others
Marketing executive makes a personal pitch for himself and others
South Florida Business Journal - by Jeff Zbar
Alan T. Brown has marketed Florida Marlins baseball and Slim-Fast. He launched Café Martorano in Las Vegas, and helped create sports radio station 790 The Ticket.
Now, he’s on a humanitarian mission to market a different product: Himself, and the millions of paraplegic and quadriplegic Americans who need better access to medical products and services.
Brown is using his marketing skills and connections to raise awareness of the conditions America’s disabled and wheelchair-bound individuals face each day. His effort includes pushing for improved funding for Medicaid and Medicare recipients, and helping veterans returning home from Iraq and Afghanistan secure motorized wheelchairs.
It’s not easy, he said, and the number of Americans living with disabilities is growing. Some 1.27 million Americans live with spinal cord injury, and 5.6 million have some form of paralysis, according to a study from the Christopher & Dana Reeve Foundation.
When these findings were released this spring in Washington, D.C., Brown was there to “put a face on paralysis,” he said. He visited the Walter Reed Army Medical Center in May with Dean Kamen, creator of the Segway, and helped arrange the donation of a motorized wheelchair to a returning veteran. He’ll go back in July to meet with the Reeve Foundation’s Paralysis Task Force.
It’s an issue that’s been part of Brown’s life since January 1988. Vacationing in Martinique, a wave’s undertow flipped Brown. The athletic, 21-year-old college student landed on his head, breaking his neck. He was left a quadriplegic.
Though confined to a wheelchair, his active pace continued. He twice completed the New York City Marathon. He’s scuba dived and skydived. Until recently, his days were long – in the office at PrimeTime Public Relations & Marketing before 8 a.m., and home to wife Susanne and their two boys after dark.
It’s not been without challenges, he said. Brown’s frenetic pace led to infection, common to the wheelchair-bound, 17 times in 2008. He battled his insurance company, which claimed Brown no longer needed a nurse, physical therapy or medical supplies.
“When people see people like me, they don’t realize what it takes to get from point A to point B,” he said.
Few who know Brown are surprised he’s taken to highlighting the plight of the disabled, said Lorne Fisher, CEO and managing partner with Fish Consulting, the Hollywood franchise marketing specialty firm where Brown has served as creative director since early 2008.
“Alan realizes there are so many people who are running into the same roadblocks in staying healthy and improving their lives,” said Fisher, whose office manager – Arno Bergara – is a paraplegic whom Brown encouraged to participate in marathons.
Brown’s decision to champion America’s disabled came last year. He had been using and promoting Johnson & Johnson’s iBot wheelchair since its debut four years earlier. Kamen developed the chair using technology from the Segway. In his iBot, Brown can climb stairs, travel through deep beach sand, and – most importantly to him – rise safely on two wheels to talk to people face to face.
But, although Brown bought his iBot, federal reimbursement caps the costs of durable medical supplies far below the iBot’s $22,000 price, he said. Johnson & Johnson ceased production earlier this year, Brown added.
“They’ll buy a guy arms and legs all day long,” he said. “This is my prosthetic device.”
He’s marshalling Kamen, the Reeve Foundation and other groups to “speak the same message” and build on his campaign to help people understand what the disabled endure. He’s helped garner TV reports and Associated Press articles. Newsweek is preparing a story, he said. He hopes to create “some sort of normalcy and fairness” for the disabled.
“This is about using my gift of gab to get as many people together on this subject as possible,” he said. “When I go to Washington, I’m not a lobbyist, I’m Alan Brown.”
South Florida Business Journal - by Jeff Zbar
Alan T. Brown has marketed Florida Marlins baseball and Slim-Fast. He launched Café Martorano in Las Vegas, and helped create sports radio station 790 The Ticket.
Now, he’s on a humanitarian mission to market a different product: Himself, and the millions of paraplegic and quadriplegic Americans who need better access to medical products and services.
Brown is using his marketing skills and connections to raise awareness of the conditions America’s disabled and wheelchair-bound individuals face each day. His effort includes pushing for improved funding for Medicaid and Medicare recipients, and helping veterans returning home from Iraq and Afghanistan secure motorized wheelchairs.
It’s not easy, he said, and the number of Americans living with disabilities is growing. Some 1.27 million Americans live with spinal cord injury, and 5.6 million have some form of paralysis, according to a study from the Christopher & Dana Reeve Foundation.
When these findings were released this spring in Washington, D.C., Brown was there to “put a face on paralysis,” he said. He visited the Walter Reed Army Medical Center in May with Dean Kamen, creator of the Segway, and helped arrange the donation of a motorized wheelchair to a returning veteran. He’ll go back in July to meet with the Reeve Foundation’s Paralysis Task Force.
It’s an issue that’s been part of Brown’s life since January 1988. Vacationing in Martinique, a wave’s undertow flipped Brown. The athletic, 21-year-old college student landed on his head, breaking his neck. He was left a quadriplegic.
Though confined to a wheelchair, his active pace continued. He twice completed the New York City Marathon. He’s scuba dived and skydived. Until recently, his days were long – in the office at PrimeTime Public Relations & Marketing before 8 a.m., and home to wife Susanne and their two boys after dark.
It’s not been without challenges, he said. Brown’s frenetic pace led to infection, common to the wheelchair-bound, 17 times in 2008. He battled his insurance company, which claimed Brown no longer needed a nurse, physical therapy or medical supplies.
“When people see people like me, they don’t realize what it takes to get from point A to point B,” he said.
Few who know Brown are surprised he’s taken to highlighting the plight of the disabled, said Lorne Fisher, CEO and managing partner with Fish Consulting, the Hollywood franchise marketing specialty firm where Brown has served as creative director since early 2008.
“Alan realizes there are so many people who are running into the same roadblocks in staying healthy and improving their lives,” said Fisher, whose office manager – Arno Bergara – is a paraplegic whom Brown encouraged to participate in marathons.
Brown’s decision to champion America’s disabled came last year. He had been using and promoting Johnson & Johnson’s iBot wheelchair since its debut four years earlier. Kamen developed the chair using technology from the Segway. In his iBot, Brown can climb stairs, travel through deep beach sand, and – most importantly to him – rise safely on two wheels to talk to people face to face.
But, although Brown bought his iBot, federal reimbursement caps the costs of durable medical supplies far below the iBot’s $22,000 price, he said. Johnson & Johnson ceased production earlier this year, Brown added.
“They’ll buy a guy arms and legs all day long,” he said. “This is my prosthetic device.”
He’s marshalling Kamen, the Reeve Foundation and other groups to “speak the same message” and build on his campaign to help people understand what the disabled endure. He’s helped garner TV reports and Associated Press articles. Newsweek is preparing a story, he said. He hopes to create “some sort of normalcy and fairness” for the disabled.
“This is about using my gift of gab to get as many people together on this subject as possible,” he said. “When I go to Washington, I’m not a lobbyist, I’m Alan Brown.”
Just Look Ahead.........
So this week was a tough week. I hurt my left arm and had my first bladder infection in 7 months. Between the pain and the antibiotics I was down most of the week dealing with the side effects, which are not fun by the way. I had to miss Max's year end awards because my body just would not go, as a father missing these milestones in my children's lives are very hard to swallow (it eats me up inside).
Today I was able to make it to Max's Lacrosse game in Boca, while I was at the game a young boy in a wheelchair wanted to check out my iBOT. I showed them all that it does and the boy kept saying he wanted one, the family was telling how much he misses because of his chairs limitations and how hard it is to look ahead. As we spoke the parents were telling me how the lack of help and restrictions the insurance company's put on them it is making it almost imposable to go forward.
Even though this week was a tough one for me, the ten minutes talking with this family made me put my week of frustration behind me and focus. I am just looking ahead and staying on track to make a difference. Here is video that The Alan T Brown Foundation received for the Mary Bea Porter Humanitarian award from the Metropolotain Golf Writers Association. I hope you watch it, we can never stop looking ahead.
Today I was able to make it to Max's Lacrosse game in Boca, while I was at the game a young boy in a wheelchair wanted to check out my iBOT. I showed them all that it does and the boy kept saying he wanted one, the family was telling how much he misses because of his chairs limitations and how hard it is to look ahead. As we spoke the parents were telling me how the lack of help and restrictions the insurance company's put on them it is making it almost imposable to go forward.
Even though this week was a tough one for me, the ten minutes talking with this family made me put my week of frustration behind me and focus. I am just looking ahead and staying on track to make a difference. Here is video that The Alan T Brown Foundation received for the Mary Bea Porter Humanitarian award from the Metropolotain Golf Writers Association. I hope you watch it, we can never stop looking ahead.
Emerald Hills resident visits DC to lobby for disabled
The Hollywood Gazette
Written by Caron Conway
Tuesday, 02 June 2009 17:14
Alan T. Brown, Hollywood businessman, quadriplegic and tireless advocate for people affected by paralysis, is on a roll, in more ways than one.
The public relations and marketing firm owner, who has spent half of his 42 years confined to a wheelchair after breaking his neck in a swimming accident, is involved in a movement to push Capitol Hill lawmakers to make a revolutionary wheelchair accessible to wounded veterans and other non-ambulatory disabled Americans.
In May, Brown joined veterans groups and renowned inventor Dean Kamen at a National Press Club Newsmakers press conference in Washington, D.C., urging Congress to pass legislation that would make the $22,000 iBOT computerized, mobilized wheelchair more affordable for Medicare and Medicaid patients.
The high-tech wheelchair is the brainchild of Kamen, the inventor of the Segway Human Transporter and numerous innovative health-care devices, including the first wearable infusion pump. Unlike traditional wheelchairs, the iBOT’s self-balancing technology allows users to “stand” at eye-level with the ambulatory population and maneuver up and down stairs, over curbs and across difficult terrain.
But the iBOT’s high price tag and low insurance reimbursement – which over time dropped to about $2,000, the same as a typical wheelchair – placed the device out of reach for most individuals who could benefit from it and ultimately halted its production in January.
Kamen, Brown and other iBOT supporters are trying to convince lawmakers to restore a higher reimbursement in light of the iBOT’s life-changing advanced technology.
“When I got my iBOT, I actually felt like I had some of my paralysis taken away,” said Brown, who made the switch from a traditional wheelchair in 2005.
Despite being paralyzed from the chest down in January 1988 when a wave flipped him upside down in the surf off Martinique, Brown is a man on the move. In addition to running his Hollywood-based business, PrimeTime Public Relations & Marketing, he counts skydiving, scuba diving and completing two New York City Marathons among his accomplishments since the accident.
The Alan T Brown Foundation to Cure Paralysis (ATBF), which Brown’s family established within a year after his injury, gave him a sense of purpose in the wake of personal tragedy. The not-for-profit 501(c)(3) organization is dedicated to changing attitudes, routines and lives through guidance, example and research funding for spinal cord injuries, which affect an estimated 1.3 million Americans.
ATBF also provides “focus, hope and the spirit to move forward” to the spinally injured and their loved ones. The Outreach and Peer Mentoring Program offers telephone counseling and matches the newly injured with those who understand all too well the overwhelming challenges, changes and adjustment they face and the need to develop a level of independence.
Brown knows firsthand the independence that can be achieved “at wheelchair level” – especially from an iBOT wheelchair. He’s using his PR and marketing background to create a national awareness campaign to pressure lawmakers to raise the iBOT’s insurance reimbursement.
“They don’t understand what it’s like to live 24 hours a day in a wheelchair,” Brown said. “I’m going to put a face on that.”
In addition to the daily struggles that the wheelchair-bound face, Brown has endured six surgeries and last year alone battled 17 infections. But he is wholeheartedly committed to making the difficult journey a little easier to navigate for disabled veterans and others living with motor disabilities and paralysis.
“I believe that this happened to me for a reason,” Brown said. “God wanted me to be a messenger, to help as many people as I can.”
For more information on the Alan T Brown Foundation to Cure Paralysis, visit www.atbf.org.
This is from the press event at The National Press Club in DC discussing getting the iBOT manufatured again.
War Produces Medical Miracles: Who Gets To Use Them?
Here is a great interview with Dean Kamen and others discussing the iBOT on NPR
Questions from end of stair-climbing wheelchair
By LAURAN NEERGAARD, AP Medical Writer Lauran Neergaard, Ap Medical Writer – Mon May 25, 12:23 pm ET
WASHINGTON – The nation's first stair-climbing wheelchair hit the market with a bang but disappeared with a whimper, a casualty of price that raises a big question: How much will society agree to pay for high-tech help for the disabled?
Johnson & Johnson quietly sold the last iBOTs this spring, shuttering manufacturing of a wheelchair that doctors had greeted five years ago as potentially revolutionary for the freedom of movement it promised — but which failed to sell more than a few hundred a year. Earlier this month, a veteran who lost his legs in Iraq received the last known available iBOT, donated after its initial owner died.
Now iBOT users who fear their chairs wearing out are joining high-profile inventor Dean Kamen — best known for his Segways — in lobbying Congress for reimbursement changes that they hope could revive a technology that left the market with a $22,000 price tag but that Medicare deemed worth about $6,000.
"If I ever had to get out of this chair, I really don't know if I'd want to live anymore, to be honest with you," says Alan T. Brown, 42, of Hollywood, Fla., who is mostly paralyzed from the chest down and on his second iBOT. "Guys in these chairs ... we might be disabled now, but then we'd really become disabled."
Price wasn't the only factor in the iBOT's demise. Only a small fraction of the paralyzed even were candidates because the high-tech chair required, among other things, use of at least one arm and certain upper-body control.
Still, disability specialists say the iBOT saga has ramifications beyond one gee-whiz but far-from-perfect wheelchair. It raises the issue of how the nation handles different kinds of medical equipment.
Take this example from Dr. Michael Boninger, who directs the University of Pittsburgh Medical Center's rehabilitation institute: Medicare routinely pays tens of thousands of dollars for hip replacements to keep the elderly walking pain-free. But a 70-year-old who can't undergo that operation must become too impaired to easily care for herself at home before being approved for a basic electric wheelchair — when short stands in the kitchen are less of an issue than going to the grocery store, Boninger says.
Medicare says that's how Congress wrote its rules.
"The wheelchair is maybe the most enabling technology in medicine, period," Boninger says. "What it is, is discriminatory policy."
The iBOT episode also sends a cautionary signal about pricey innovation. New technology requires scientific evidence that it changes users' lives in ways existing alternatives cannot, says Henry Claypool, the new director of the federal Office on Disability, which advises the secretary of health and human services.
"Innovative technology should be treated as something we need to embrace when we really find it has a chance to advance a group's function and integration into the community," says Claypool, himself a wheelchair user.
Did the iBOT do that? It depends on who you ask.
The iBOT's wheels rotate up and over one another to go up and down steps, using gyroscopes that sense and adjust to a person's center of gravity. The Department of Veterans Affairs bought the chairs for a limited number of disabled soldiers.
Yet by the end of 2006, Medicare had concluded that the stair-climbing function and other features — lifting users to standing height and powering over uneven turf — weren't medically necessary for at-home care; it would pay only the basic electric wheelchair price. Medicare does provide far pricier wheelchairs, equipped for certain pressure-easing motions or to handle breathing equipment, when doctors deem them required.
J&J blamed reimbursement in part for lack of a "sustainable market," but pledged to provide iBOT users repair service through 2013.
"Giving people independence and access and freedom and technology ought to be something we do," says Kamen, who argues that an iBOT might save money on home modifications.
But today's emphasis is to expand access to health care rather than provide pricier improvements, cautions University of Michigan business professor Erik Gordon, who tracks J&J. He just heard the venture capitalists who fund device research warn industry that new designs must prove a better value than alternatives.
"To a certain extent, there are breakthroughs we just can't afford," Gordon says.
Gary Linfoot of Clarksville, Tenn., illustrates the pros and cons. The Army pilot was paralyzed in a helicopter crash in Iraq last year and found an iBOT through the nonprofit Huey 091 Foundation — but switches between it and his VA-provided manual wheelchair. The smaller, lightweight manual lets him drive a car, not a van, to Fort Campbell, where he now oversees an aquatic training facility. He installed an elevator in his house.
But he uses the iBOT at home, to reach high shelves or work under his car's hood. He also uses it to visit friends whose houses have a step or two that "may as well be Mount Everest," says Linfoot. "You don't understand all the accessibility issues until you find yourself in one and you're trying to navigate the world yourself."
It makes no sense....
Yesterday i gave an old power wheelchair to a quadriplegic who has been waiting 2 years to get one through Medicare. The smile on his face knowing that he can now get around was priceless. It makes no sense that we have to pass on our used wheelchairs and supplies in order to give people some quality of life. We will change that so people in need can move on.
Here is an iBOT commercial that shows what they can do. These chairs need to be made again.
Here is an iBOT commercial that shows what they can do. These chairs need to be made again.
Veterans Push for Legislation to Cut Cost of High-tech Wheelchairs
Veterans groups and the inventor of the Segway scooter urged Congress to
pass legislation that would make a high-tech mobilized wheelchair more
affordable for wounded veterans and other paralyzed Americans at a May
14 Newsmaker.
The iBOT, a mobile powered wheel chair, has gone out of production
because Medicare is reimbursing purchases at the same rate as other
kinds of wheelchairs. With a price tag of about $22,000, that puts the
iBOT out of the reach of most people in the market for the device, they said.
One of them of who bought his iBOT when it was within his budget is Gary
Linfoot, a helicopter pilot who provided air support for special
operations forces in Iraq. Linfoot was injured in the country in 2008 in
a crash that left him paralyzed.
Linfoot has been maneuvering in an iBOT for about six months. He
testified that it is different from traditional wheelchairs because it
allows him to rise to six feet and talk to people eye-to-eye, ascend
stairs, negotiate curbs and travel over any kind of terrain -- including
sand and dirt.
The iBOT has also revived opportunities that seemed dead when he
returned from the war.
“Suddenly, some of those doors have opened,” Linfoot said at the
Newsmaker.
A civilian also praised the way the machine changed his outlook. “I felt
like I was not paralyzed anymore,” said Alan Brown, a paraplegic injured
in a swimming accident nearly two decades ago. “This chair is my life.”
Brown said that the iBOT is less expensive than similar wheelchairs on
the market. But without a higher government reimbursement it is still
too costly for him and most of the other 1.3 million Americans with
spinal cord injuries.
Dean Kamen, inventor of the iBOT as well as the Segway, is trying to
convince Congress to restore a higher reimbursement for the iBOT to
account for its greater technological attributes. The rate has fallen
to that for typical wheelchairs -- about $2,000.
“It’s a sad story if (iBOTs) go away, but it’s not because there’s a
villain,” Kamen said. “Sometimes bad policy just happens.”
He said society has an obligation to give veterans the benefit of the
best technology. “What do we owe people we’ve sent into harm’s way?”
--Mark Schoeff Jr.
Watch out D.C I am getting ready to come back.
Today was an unbelievably emotional day. The day started at The Walter Reed Army Medical Center where Dean Kamen, Stephen Baldwin, Leeann Tweedan and I went to visit injured soldiers who just returned home. I have never seen so many young men, who served our country, missing arms and legs -- it was absolutely horrifying. We also saw so many paralyzed soldiers. Dean and I left the hospital, looked at each other, and realized even more-so how imperative it is to keep the iBOT wheelchair in production.
The Huey 091 Foundation which has been donating iBOT wheelchairs to soldiers, made a donation of an iBOT to a quadruple amputee soldier who just returned from the war. The iBOT was given to the Huey 091 Foundation by the Darreyll Gwynn Foundation which also donates wheelchairs to people who can’t afford them. By giving this young man an iBOT – we changed his life. What a great feeling it was to see his face and know we made a difference.
At 3pm we had a press conference at the National Press Club - a Newsmaker event. Gary Lawson(Heuy 091 Foundation), William Chatfield (SSS), Jim Palmershon (American Airlines), Brandon Millet (Founder of The GI Film Festival), Gary Linfoot (a spinal cord injured fighter pilot who uses an iBOT), and I addressed the media about the discontinuing of the iBOT wheelchair. I think people were shocked by this news. Our support to get this changed is growing rapidly. At the end of the event, Stephen Baldwin grabbed the microphone and publicly joined our team. He started calling for immediate action and awareness of this issue. It was very inspiring!
The final highlight: Dean Kamen agreed to be the Guest of Honor at the 21st Annual Celebrity Golf & Tennis Tournament on August 3, 2009 benefiting The Alan T Brown Foundation. It is very difficult to describe the range of emotions I felt this week, but I feel good knowing this is just the beginning! This is one piece of my overall goal to make sure the 1.3 million people with spinal cord injuries and 5.7 people who suffer from paralysis will have a better quality of life. Watch out D.C – I’m planning my comeback!
Great day in DC
What a great day. I met with Dean Kamen and we discussed our game plan for getting the iBOT wheelchair made again. We know that we are both totally committed to making sure our government understand how the iBOT changes peoples lives who use the chair and the people around them.
We headed over to The GI Film Festival (which is taking place this week)reception at the Rusell Senate Caucus Room. Gary Lawson from The Huey 091 Foundation which buys iBOT's and gives them out to soldiers who return from war addressed the room to discuss the iBOT and how we need to get these chairs rolling again. After that Dean Kamen spoke about his commitment to helping our troops that come home in need of wheelchairs and in need of new arms (the Deka Arm) which is like no other. Dean said "He would never stop creating devices to better individual's lives".
Here are some pictures from the reception. Kelsey Grammer, Senator John McCain, Leeann Tweeden, Dean Kamen and oters were on hand. Big day tomorrow with a visit to the Walter Reed Hostital and then a Press Conference at The Nation Press Club.
