Paralyzed man leads charge for healthcare reform

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.”

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.

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