Photo by Charlie Samuels

I’ve been New Mobility’s reporter on the iBOT beat since the beginning. A barrage of network news shows introduced the chair to the world in 2003. Back then I interviewed Dean Kamen, its celebrated inventor, and many of its original testers. I wrote about trying out an early iBOT at J&J’s New Jersey headquarters. Later, I did a story about the new model and its happy owners.

The problem with the iBOT was that it never had enough buyers. Despite its many wondrous features – stair climbing, rolling over curbs, across beaches, raising you eye-to-eye with a standing world – sales of the chair were crushingly disappointing. By last December, when Independence Technology, the J&J subsidiary that was the exclusive marketer of the machine, called it quits, it had reportedly sold only 400 iBOTs and had spent untold millions in the effort.

“Despite significant longterm investment by the company and acceptance of the iBOT mobility system,” said Independent Technology’s stiffly worded death notice, “demand has not proven sufficient to create a sustainable market. A challenging reimbursement environment for innovative assistive technologies has been a factor in limiting demand.”

All the experts I spoke to blamed the failure on the refusal of insurance companies to pay for the $23,900 wheelchair. Those companies took their cue from Centers for Medicare & Medicaid Services’ decision not to buy them for its clients. Veterans Affairs, a separate federal agency, did buy some.

“Most people need insurance coverage to buy an iBOT,” says Rory Cooper, a wheelchair-using para who is the chief engineer at the University of Pittsburgh’s School of Health and Rehabilitation Sciences. “Not having it knocked out 90 percent of the market for Independence Technology.”

Insurance coverage wasn’t what stopped me, and I suspect hundreds of others, from getting one. I would have used my own savings to pay for an iBOT if my carrier had turned me down. But I never asked.  I didn’t get an iBOT because you couldn’t drive from it. As a quad, I have trouble with transfers, so I have to use my wheelchair as a driver’s seat. Crips who need a chair to tilt or recline also found the iBOT wasn’t for them. It just didn’t do those things.

The original bulky model had other problems — an initial price tag of $29,000 and a seat that wouldn’t fit under a normal table or a desk. It also lacked swingaway footrests and arms. You weren’t even supposed to ride in one as a passenger in a van. The slimmed-down iBOT, introduced in 2006, overcame many of those difficulties, but you still couldn’t drive, tilt or recline in it.

Will the iBOT be Resurrected?
Kamen agrees that those early and ongoing troubles stifled sales. “We knew that. It was so frustrating that it took us so long to fix the driving problem and add tilt and recline,” he says, “but we now have it. Once we’ve resolved the insurance issues, the iBOT will be much more useful to many more people.”

Kamen hopes to change CMS policy. If he does, he believes Independence Technology will resume selling the chair. Kamen takes J&J’s pledge to continue technical support and service for iBOTs through the end of 2013 as a positive sign. “I really can’t blame J&J,” he adds. “They hung in for many years, hoping that we would get better treatment by CMS. I think they are now saying that we should go get Medicare approval and then they’ll come back.”

An Independence Technology spokesperson isn’t nearly as positive: “We don’t have any plans at this point to reconsider the decision,” says Ola Abou-sabe, general manager at Independence Technology. “But certainly we are hopeful that Medicare does reconsider its decision. It would be a win for the disability community at large.”

All is not lost even if J&J doesn’t change its mind. Kamen and his DEKA Research & Development Corp. hold the patents on the chair. It could lease the rights to another company or it could sell them, maybe through a network of dealerships, rather than limiting sales to a single company.

But for now, Kamen is turning his attention to Washington, where he hopes the new Obama administration and his own powerful political friends will persuade CMS to revise its iBOT rules. “We’re talking to people there,” he said. “We’re preparing to deal with a new administration that has a new perspective.”

Massachusetts Sen. John Kerry, the influential Democrat, is one of his pals. Kamen is counting on him to push a bill that would force CMS to reverse its iBOT policy. Kamen also counts Republican Sens. Kent Conrad of North Dakota and Michael B. Enzi of Wyoming as friends. They are two of the bill’s sponsors. And, of course, Congressman James R. Langevin, D-R.I., is solidly on his side. Langevin is Congress’ only fulltime wheelchair user. He’s a quadriplegic who has been getting around in an iBOT for the past three years.

“I was very disappointed when Dean Kamen called me about Johnson & Johnson’s decision,” Langevin recalls, “but I haven’t given up the fight.” While the legislation is pending, he’s going to try another approach. “My plan now,” he explains, “is to go to CMS and get them to change the rules administratively.  We had hit a wall dealing with CMS under the Bush administration. I think that a new director there, and a new head of the Health and Human Services Department, perhaps will be more receptive to having it covered, but I don’t yet know that. I wouldn’t want to raise false hopes, but I am going to do my best to see that it’s changed,” he promises.

“Congress wanted to change the law earlier to get it covered,” he points out. “There were a number of reasons it didn’t, finances being one. I thought we had done a very good job crafting the wording on the bill then, so that only those people who absolutely needed it would get the iBOT. The reimbursement would be tailored to need.”

Langevin loves his iBOT. “It is an amazing piece of equipment,” he says. “It has brought down a lot of barriers and opened up a lot of doors for me. In terms of being able to live independently, it has made life easier.”

But the iBOT isn’t for everyone. Take 35-year-old Todd Smith, for example. He’s a motivatioal speaker with spastic cerebral palsy who lives in Northglenn, Colo. “The iBOT looked like a great chair, until I went to the training,” he writes in an e-mail. The required two-hours training course for iBOT buyers should be much longer, he says.

“The iBOT had so many functions

[five] that you had to memorize,” he recounts. “I have a Bachelors of Arts degree, and I couldn’t retain all of it. I never brought the iBOT home because I couldn’t pass the driving test. I couldn’t believe it, because I’ve been driving a power chair since I was 7 years old.”

iBOT Believers
Forty-year-old Nancy Nelson of Durham, N.C., is more typical of the iBOT owners I’ve interviewed. “I cannot think of any other chair,” she writes in a letter published in New Mobility’s February issue, “that would allow me to leave my house, go down a curb, across my neighbor’s gravel driveway, and with her assistance up the porch and into her house.”

Speaking by phone, Nelson, who has MS, told how she got her chair more than three years ago: “My sister-in-law and her husband have plenty of money,” said Nelson. “She called me and said, ‘I saw this program on television about this neat wheelchair. Do you want one?'”

“Yeah,” replied Nelson, “I want one, but it costs more than a car.”

“That’s OK,” her sister-in-law said, “if you want one, I’ll write you a check.” But Nelson started having second thoughts about the iBOT — until she ran into a woman who was using one. She asked the woman if she thought it was worth the price.

“The woman got the biggest smile on her face,” Nelson remembers. ‘You bet!’ she told me.” After that, the decision was easy.

Not everyone has a wealthy and generous relative, Nelson realizes. “I know the iBOT is expensive,” she writes in her letter, “but the Medicare/Medicaid policies that basically place people with severe disabilities under house arrest are disgusting.”

Nelson wouldn’t get much argument about that from Rory Cooper in Pittsburgh. He ran early clinical trials on the iBOT and has been a fan of the chair ever since. “I am disappointed that J&J never received adequate insurance reimbursement for them,” he says. “Government policy seems to prefer paying for knee and hip surgery over power wheelchairs.

“If you can walk around your house,” Cooper explains, “it is very difficult to get Medicare or Medicaid to buy you a power chair. However, a person can still get the government to pay for a hip or knee replacement operation, even if they can walk around the block or even walk a half-mile.”

The necessary inpatient rehab that follows compounds the cost of surgery, which often is much more than the cost of an iBOT. In addition, Medicare routinely pays for six weeks of outpatient rehab following the surgery, says Denise Keehn, the owner and director of the Northern Valley Physical Therapy Center in Northvale, N. J.

Dean Kamen is still very hopeful. “I’d like to think that the shutdown is a temporary condition,” he says. “I am confident we are going to find a way to make sure the people that need that technology get it. As you probably know, I never give up.”

I haven’t given up, either. I just had new tires put on my 9-year-old E&J power clunker. I’m going to try to keep it going until I finally get my own iBOT.