Response to the victims who lost limbs in the Boston Marathon bombings has thrown a spotlight on just how far the field of limb replacement and rehabilitation has come in a short period. Not only were doctors on the scene with extensive field experience with limb trauma, but a broad coalition of manufacturers also stepped up to pledge an array of prostheses, no matter the cost. Waiting in the wings has been an extensive peer support program designed to help amputees navigate the difficult road ahead.
"People who lost legs in this tragedy will face many challenges," says Rose Bissonnette, founder of the New England peer visiting program for the Amputee Coalition, a national advocacy group assisting the 16 people who lost limbs in the Boston bombings. But, she adds, there are people and equipment and services that no previous generation has had.
"Those who lost limbs will face many issues besides what [prosthetic] leg to use," says David Shurna, executive director of the nonprofit No Barriers USA, which has launched a fund to provide the most advanced athletic devices available to the athletes among the Boston bombing victims. "We want to help turn adversity into opportunity."
The terrible efficiency of the Boston bombs in targeting lower limbs has highlighted a growing population of Americans – currently some 2 million – living with limb loss.
Yet this comes at a time when the prosthetics industry itself is undergoing unprecedented expansion. There's the reality of carbon-fiber blades, which allowed South African double amputee Oscar Pistorius to compete in the 2012 London Olympics. And the goal of creating artificial hands nuanced enough to play a Brahms concerto has already led to prostheses that give people the ability to open a soda can or slap a high-five.
But obtaining the proper prosthesis is just the beginning. Other challenges include learning how to use the device; dealing with long-term, specialized needs; and paying sometimes extraordinary costs.
Still, hope is palpable, as limb-replacement technology has progressed faster than many thought possible a mere decade ago.
"There is so much happening in the research world: It is not linear, it is exponential because there are so many more people working on these problems," says double amputee Hugh Herr, an avid mountain climber and associate professor who directs the Biomechatronics group at the MIT Media Lab in Cambridge, Mass. For 20-year-old bombing victims being fitted for artificial limbs now, he says, "by the time they are 40, the bionic legs we have in society will be extraordinary and will make today's limbs look prehistoric."
Roughly 1,800 troops and veterans are living with limb replacements as a result of the Iraq and Afghanistan conflicts. In addition, on a daily basis, roughly 300 to 400 join the ranks of civilians with limb loss, attributed to accident or disease.
If the patterns of recent years were to continue for the next two decades, according to the Centers for Disease Control and Prevention, then the number of Americans living with limb loss will double. The CDC predicts more disease-related limb loss as the population ages.
Casualties from Iraq and Afghanistan started to increase awareness about the needs, and as a result, the Defense Department's Defense Advanced Research Projects Agency (DARPA) has poured more than $144 million into research projects since fiscal year 2006. An era of innovation has ensued, bearing extraordinary fruit.
"We are living in a great moment, especially in the last three or four years," says Michael Corcoran, a prosthetist who has been at Walter Reed National Military Medical Center in Bethesda, Md., since 2005.
The devices being developed are ever more effectively meeting amputees' needs. In general, this means a focus on the load-bearing properties of lower limbs, while for upper limbs, it's about the ability to manipulate objects.
Soldiers who in previous generations would have suffered with inflexible and often painful prostheses are now using electromechanical knees and ankles that bend and flex like a natural limb. Dr. Herr of the MIT Media Lab, for example, has designed a BiOM Ankle System that emulates muscle and tendon function. This provides power to walk with a natural gait, reduces fatigue and pain, and improves balance.
One idea that veterans are testing is the DEKA bionic arm, dubbed the "Luke" after the hero of the "Star Wars" films, who lost a hand and wore a prosthesis. Work on the arm was sponsored by DARPA and the US Army Research Office. It represents big progress in being able to perform "such seemingly simple tasks as turning on a faucet or picking up a glass," says Robert Jaeger, director of deployment health research at the Veterans Health Administration Office of Research and Development, which is heading the study.
Other frontiers include user intent, which allows mental control of upper and lower artificial limbs. This is advancing in government-funded labs across America and is flowing into the nonmilitary market. Also, the Wake Forest Institute for Regenerative Medicine in Winston-Salem, N.C., is exploring the body's ability to restore itself, including one day perhaps full arms and legs. (See sidebar.)
Providing the best, most current prostheses no doubt comes at a high price. In fact, the financial reality may be more challenging than the emotional impact of losing limbs, says double amputee Jeffrey Cain.
"What most people face initially are all the questions of will I be able to walk again, ride my bike, or do all the other things I love in life," says Dr. Cain, president of the American Academy of Family Physicians. Those questions are ones they expect to work through eventually, he says. But, he adds, "what most Americans are not prepared to face is the reality of having to hold a bake sale to pay for their prosthetics."
The Amputee Coalition estimates that a limb replacement can cost as much as $500,000 over a lifetime. But the Defense Department says that the cost for just five years could total as much as $450,000, notes Daniel Ignaszewski, director of government relations for the Amputee Coalition.
While Medicare, veterans benefits, and workers' compensation cover many items, most employer-provided and private insurers offer minimal coverage – sometimes with a lifetime cap as low as $1,000 for one artificial limb.
"I had very good insurance," Cain says, "but it still only offered a $1,000 yearly benefit for prosthetics." He does not have prostheses with electronics but rather has carbon-fiber lower limbs. He now cycles, snowboards, and even flies planes, despite having lost his legs in a plane accident in 1996.
Health insurance companies typically provide a device appropriate for the "level of functioning" of a patient, says Susan Pisano, spokeswoman for America's Health Insurance Plans, a trade group in Washington. "The device will be recommended if my level of physical functioning allows me to take advantage of that device," she says. "For someone who wouldn't be able to use the functions or use the capabilities of a more advanced device, they might not provide coverage." Ms. Pisano is quick to add that in the event of a disagreement, the patient has the right to appeal.
The Amputee Coalition has worked for the passage of laws requiring insurance companies to provide more coverage for prostheses. Twenty states have banned cost caps for prostheses and have mandated that coverage be on par with Medicare's provisions or with other benefits in a particular policy, Mr. Ignaszewski says.
The Amputee Coalition is pushing to reintroduce in Congress the Insurance Fairness for Amputees Act, which contains measures similar to those passed at the state level.
"We are hopeful that the attention on this issue coming away from the Boston tragedies will help focus attention on the real needs of those living with limb loss," Ignaszewski says.
What an insurance company may regard as experimental or deluxe, many who use the devices do not.
"Should I have to accept that a fused ankle is the standard for my life just because that is the equipment that has been in use for many years?" asks Dave McGill, who lost his left leg in 1996. He and his wife were driving home from a Christmas party; he stopped to push a stalled car and was hit from behind. Now he wears a power knee with rechargeable batteries – one that allows for more-naturalistic joint movement than past prostheses.
"If you asked most normal Americans, they would say that an ankle with movement and flexibility is pretty standard. So why shouldn't I be able to have that if it is available?" Mr. McGill says.
In the days following the Boston bombings, Pisano says, insurance companies across the country received many calls for information about coverage and costs of prosthetic limbs. "This is very typical," she says. The attention helps focus discussions within the industry, which is constantly reevaluating societal expectations for what is considered normal, Pisano adds.
Yet another of the many challenges for those with limb replacements is the process of learning to use and live with prostheses. Now that public attention is moving on from the Boston bombings, "this is where these individuals have to face their life, day by day, with a new set of realities," says Ms. Bissonnette, who has a prosthetic left leg and visits those navigating limb-loss challenges.
While she is far from an athlete, she has learned a runner's lesson: "You have to pace yourself," the grandmother of six says.
Roberta Cone, who lost her left forearm in a car crash a decade ago, found that her standard-issue hook arm was heavy and cumbersome. "It pretty much sits in my closet now," she says, adding that she estimates this to be true for some 50 percent of those with upper-limb loss. Dr. Cone, a psychologist who volunteers for the Amputee Coalition, has learned to do many simple tasks such as carrying a grocery bag without her artificial limb.
The biggest challenges were more mental, she says – such as going out in public for the first time. "The first few times I went to the grocery store where they know me pretty well were hard enough," she says, but going to the gym was the hardest. "It's all about body image," she says.
"I have learned to walk with grace and say I am a beautiful woman," she adds. People take their cue from her, she says: "If I smile and let them know I'm OK with the way I look, most people will relax."
Bissonnette says the toughest moments for her are when children approach with a natural curiosity about artificial limbs – and their parents pull them back. "I'm happy to talk to anyone," she says. "I may look different than I did, but I am still a human being."
Achieving – and maintaining – equanimity is the work of a lifetime, says Terrence Sheehan, chief medical officer of the Adventist Rehabilitation Hospital of Maryland. Dr. Sheehan pioneered a certification process for lifelong rehabilitation programs, one that is now in use in some 40 programs across the United States since 2008.
Long-term attention to the needs of limb-loss patients is a neglected side of American health care, he says, adding, "Once the spotlight is gone, many of the victims of the Boston bombing will face uncertain answers to the question of what is next."
Many long-term issues such as phantom and chronic pain occur intermittently and are not well understood. Lawrence Poree, director at large of the North American Neuromodulation Society at the University of California, San Francisco, has been working on spinal cord stimulators to address phantom limb pain. Alternatives to opiates such as morphine are urgently needed, he notes.
"The use and misuse of opiates in this country has reached epidemic levels," he says.
McGill, a former lawyer, now works for Össur, one of the largest manufacturers of prosthetic limbs. The loss of a leg has forced him to consider his reasons for doing anything that he does. "One thing that losing my leg did for me was make me want to do something with my life that matters," he says.
He, too, acknowledges the media attention on the Boston victims, but he points out that each has a "long road ahead of him, and it is one without a good road map." While stories of hope and courage are important, so is a better understanding, he says, of what lies ahead.