On April 15, the United States watched in sadness and horror as reports emerged that two improvised explosive devices had been detonated at the finish line of the Boston Marathon. The marathon, an example of perseverance, determination and triumph, was transformed from a scene of victory and celebration to one of chaos and devastation.

In the aftermath of the bombings, it was quickly reported that three people had died and hundreds of others were injured. It was also reported that many victims had already lost limbs at the scene, and more limb loss was imminent. After hearing this, it did not take long for members of the O&P community to organize and show their support for these victims.

Thanks to this quick response, the amputees now have access to prosthetic devices and resources necessary for recovery and transition, just a few short months after the blasts.

 

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Initial treatment

“Having been in Boston for 22 years, Marathon Day or Patriot’s Day is probably one of my most favorite days,” David M. Crandell, MD, the director of the amputee program at Spaulding Rehabilitation Hospital in Boston, told O&P Business News. “It is the day that millions of folks line the streets and cheer for everyone. Whether you are in a wheelchair or running on a prosthesis or you are in the elite pack for men or women, everyone is celebrated. So having an attack on that event has obviously dealt a significant blow to the psyche in Boston.”

 

After the blasts, the victims were rushed to local hospitals for treatment. The onsite medical staff and resources intended for the runners, as well as the rapid and courageous aid of spectators, volunteers and participants, also had a significant impact.

“There was a clinical team at the finish line to be of assistance so individuals got immediate attention and resuscitation, and then they got ferried to all of the hospitals where staff was waiting for them to deliver initial trauma resuscitation,” Crandell said. “And it has been reported that no one who made it to the hospital alive died from their injuries.”

As the amputee patients were discharged, they were sent to facilities such as Spaulding to begin the rehabilitation process. At the time of publication, Crandell was treating 24 bombing victims at Spaulding, 10 of whom had undergone amputations, and he expected more to be arriving in the coming weeks.

“I think one of the unique aspects of this is that I’ve never professionally had this large a number of traumatic amputees all at one time, and they are all in some way connected to a terrible event,” Crandell said. “I think is important for us to work hard to make sure that they get to the highest level of function possible, not only for their own individual recovery, but I think for the larger community and the nation and internationally. People need to know that you can do well with good quality rehabilitation and good prosthetic and orthotic care.”

Multiple families have had more than one family member or friend sustain injuries from the blasts, making a difficult situation even more so.

“Several people were standing at the finish line in family groups or friend groups, so it has not only affected one individual, but the entire family and sometimes an extended family,” Crandell said. “So that is a kind of unique situation where you not only have to care for the rehab and the psychological needs of the patient, but the family members as well.”

Financial support

In instances like this, it is especially important that these families have access to necessary care and rehabilitation without the additional psychological and financial stress that can be caused by insurance.

To ease that burden, numerous funds, such as One Fund Boston, have been established, and the money raised will be used to cover the medical costs for uninsured or underinsured victims. Medical professionals also have donated their time, and hospitals are working with insurance companies to arrange for payment plans or alternate billing options for these patients.

The O&P community also has mobilized to ensure that the amputee victims will have access to the necessary prosthetic devices. The Coalition to Walk and Run Again, which was established by the American Orthotic and Prosthetic Association (AOPA) with the assistance of the Amputee Coalition and the National Association for the Advancement of Orthotics and Prosthetics, aims to provide amputee victims with their initial prosthetic devices.

“Our goal here as the makers of artificial limbs is to extend compassionate aid to the victims of the Boston terror attacks,” Tom Fise, JD, executive director of AOPA, stated during a press conference on April 30. “We want to ensure that in the midst of this horrific tragedy, these individuals are not further traumatized by the harsh and unreasonable limits that are present in all too many health insurance policies today in the United States. As an industry, we would not want to see these people victimized twice.”

The Coalition is working with clinicians and device manufacturers to ensure that the necessary devices will be provided at no cost to patients.

“All Americans are experiencing the shock of the Boston Marathon bombing, coupled with the desire to assist the victims of this senseless violence and mayhem,” Charles Dankmeyer, CPO, AOPA vice president and founder of Dankmeyer Inc. in Linthicum, Md., stated during the press conference. “As the certified prosthetists and orthotists who practice in patient care facilities and the orthotic and prosthetic manufacturers who develop the technology and create the components for artificial limbs and customized bracing that restore mobility, we are in a unique position to offer needed assistance. We want to do what whatever we can to help these fellow Americans as they start this challenging journey.”

Patients need only submit a letter from his or her physician to AOPA stating that the patient was injured in the Boston Marathon bombings and his or her insurance coverage will not sufficiently cover the cost of the necessary O&P care. The letter should also include the patient’s specific requirements and geographic location. Once the letter has been received, AOPA will work with its network partners and practitioners to arrange for the necessary care and device delivery.

“We will take the direction from the physician as to what type of prosthesis this patient needs, and we will coordinate with providers to assure that the patient receives that prosthesis,” Fise said. “We will also be coordinating with the component manufacturers who have indicated their willingness to provide the components that the care provider would use in fabricating the unique device for that patient.”

Adaptive equipment

The Coalition to Walk and Run Again will provide patients with their initial prosthetics devices, but that will not include physician or hospital bills or any type of athletic or adaptive equipment that they may request. Fortunately, other organizations are stepping in to provide these services.

The Challenged Athletes Foundation (CAF), for example, has created a fund that will specifically support the Boston victims by providing athletic prostheses and training when they are ready to pursue athletic activities.

“We want to do whatever we can to assist the victims of Boston to get back into sports,” Roy H. Perkins, senior director of programs and strategic development for CAF, told O&P Business News. “We have created a special fund that will be used to fund mentoring if necessary, equipment and other types of activities that will assist the victims.”

The fund will provide athletic prostheses, such as running legs, as well as cover the cost of coaching, mentoring or other related expenses necessary for these activities. CAF is also hosting a running clinic in Boston on Oct. 5 and will encourage all the victims to attend.

“We had already planned that [before the bombings], but we are looking at it now as a pivotal moment for us and the victims,” Perkins said. “We will bring some of our established athletes and people that have been successful in being active after an amputation to the clinic, and the goal is to inspire anyone who wants to be active, anyone who wants to be up and moving again, to do so and see what is possible.”

CAF has invited these individuals to its annual San Diego Triathlon Challenge later that month to further demonstrate these possibilities.

“It’s obviously a tragedy, and we are all sickened by it, but if there is any silver lining from this, it is that technology has advanced to a point where individuals will be able to be active again,” Perkins said.

Other organizations, such as No Barriers USA, are also working to help the victims realize their athletic goals. No Barriers is a nonprofit group in Colorado that helps people with disabilities pursue athletic activities. They established the No Barriers Boston Fund, which will be used to provide high-level prosthetic devices and adaptive equipment for the bombing victims.

 

“The No Barriers Boston Fund is about helping people to get the advanced athletic prosthetic limbs that they may require to return to an active lifestyle,” Bill Barkeley, a member of the No Barriers board of directors and spokesperson for the fund, told O&P Business News.

The No Barriers Boston Fund, which set a fundraising goal of $500,000, was established as a partnership with Hugh Herr, the lead researcher at the Massachusetts Institute of Technology Biomechatronics Research Lab, who was approached about creating a fundraising campaign for the victims. Herr, who is also a former No Barriers board member, proposed the idea to No Barriers, who immediately agreed to help.

“No Barriers jumped on board to be able to use that money to either provide prosthetics, retreats, rehabilitation services or whatever they may require once we get a better assessment of what the process is for each victim,” Barkeley said.

No Barriers works with individuals with various disabilities to achieve all types of athletic goals, including hiking, mountain climbing and biking, and works with inventors, product developers and outdoor recreation outfitters to arrange for the necessary adaptive equipment once a goal has been established.

“It is leading-class technology, and we have experience in actually doing these active adventures and recreational-driven activities with people coming out of situations like this,” Barkeley said.

For the Boston victims, additional support provided by No Barriers could include counseling, mentoring, retreats or development of adaptive athletic equipment.

“There are many Boston funds out there, but the advantage of this one is if someone has a specific interest in providing state-of-the art prostheses to a bombing victim, this would be the most direct way,” Barkeley said. “The fund will be used exclusively for those needs associated with prostheses and advanced technology.”

Peer counseling

In addition to ensuring that the victims of the bombing will have access to prosthetic devices, many organizations are also arranging for peer visitations and counseling.

Almost immediately after the first reports of the attacks, the Amputee Coalition reached out with its partner organization, the New England Amputee Association (NEAA), to arrange peer visitation for the victims who had lost limbs.

 

“We knew that we had an active support group in the area, and we knew that we had some people in the community that could help,” Sue Stout, chief policy and programs officer for the Amputee Coalition, said.

During these peer visitations, the NEAA sends a certified peer counselor to visit with the new amputee and discuss potential challenges.

“What we do in these sessions is listen to them. We are there to answer their questions,” Rose Bissonnette, the founder of the NEAA, told O&P Business News. “And the people that I send in are experienced in visitation and well-adjusted themselves living with amputation. So when a new patient sees a person like that coming in, they feel more comfortable due to the fact that in a few months or a few years, they could be doing this.”

 

Organizations like the NEAA also offer support groups and informational meetings about topics like health care costs. They can also provide peer support for family members of amputees.

“We include the families as much as we can,” Bissonnette said. “Sometimes when we go in for peer visits, the families are there, and sometimes they ask more questions than the amputees themselves.”

“In addition to training amputees as certified peer visitors, we also train family members,” Jessie Cantrell, peer support coordinator for the Amputee Coalition, added. “So it may be the mom or a sibling or a spouse of an amputee.”

 

In addition to peer counseling in the hospital or rehabilitation facility, organizations can guide new amputees when considering things like home remodeling, driving or other activities of daily living.

“We prepare them for the future — short-term planning or modifications of homes that might be needed for them to be released from the hospital,” said Aaron Holm, the founder and president of The Wiggle Your Toes Foundation, a nonprofit organization in Bloomington, Minn. “Steps may need ramps, railings, safety bars in bathrooms and things like that, and we can do the modifications ourselves or make recommendations and fund them through contractors. We form a path for them through the stories about the recovery and successes of our members.”

 

Holm, who founded the Wiggle Your Toes Foundation after he underwent a bilateral transfemoral amputation after he was hit by a car, visited the victims and the medical staff in the local hospitals shortly after the bombings.

“It was pretty incredible. I think it was 10 days after the bombings when we actually set foot in Boston,” Holm said. “We met and spoke to several different groups, rehabs, a lot of the surgeons and physical therapists, and we talked about our personal stories.”

Holm added he did not expect that the group’ presence in Boston would have such an impact on the local community.

“People would come up to us and say thank you for being here, and we really didn’t understand that,” Holm said. “But one woman came up to us and put it into perspective when she said, ‘When we look at you, we see the future. We see the opportunity that these individuals, these survivors that have lost limbs, have through prosthetics and perseverance.’ And it clicked for us that they are looking at us and seeing the future for these survivors.”

Social media platforms such as Facebook have played an essential role in connecting people with these organizations.

“Facebook is not an afterthought for us,” Stout told O&P Business News. “It is in integral part of how we provide support in the community. And there are folks on the page looking for support, and these are family members, siblings and spouses, as well as amputees just trying to get support from other people who have similar experiences.

“And what we have learned is that some people like to get their support face-to-face, and some people may want to get their support via Facebook or another mechanism. You have to provide different ways for people to get support in a way that is comfortable for them,” Stout added.

Insurance fairness

Although tragic, the events in Boston have brought the issue of insurance fairness for O&P devices into the national spotlight.

 

“We are trying to balance how we approach this horrible event in a way that raises awareness, and hopefully raises awareness to decision makers so that this event can influence and support initiatives for the larger community,” Kendra Calhoun, president and chief executive officer of the Amputee Coalition, told O&P Business News.

The exposure from the Boston bombings has already brought increased awareness about the benefits of peer counseling, and according to Cantrell, the number of requests received for peer visitors has doubled since the Boston bombings.

“I am still receiving multiple requests from amputees across the country every day who are interested in helping the Boston victims, but also looking for how to help other amputees in their community,” Cantrell said.

The Amputee Coalition also hopes that the recent media attention will also persuade decision makers and legislators to consider legislation that it has already proposed.

 

“People pay these premiums expecting to be covered, and if it doesn’t cover these devices adequately, then that is an issue,” Dan Ignaszewski, Amputee Coalition government relations director, said. “We call the legislation the Insurance Fairness for Amputees Act and the Insurance Fairness Laws, and it centers around fair access to prosthetic devices for amputees.”

The Amputee Coalition’s main argument is that a prosthesis is a medical necessity and insurance companies need to treat it as such.

“Prosthetic devices are restorative care. You wouldn’t tell somebody that they can have $2,500 for a knee replacement or one hip replacement per lifetime,” Ignaszewski said. “You wouldn’t make those types of classifications, and what these laws do is make sure that those classifications aren’t put on prosthetic devices.”

“I think the publicity this story has received has to have some sort of impact, some sort of eye opening for the legislators who make the decision of insurance fairness for prosthetics,” Holm said. “We need to educate the legislators through the success of the outcomes of these people who were injured after they received the proper care and the right products and technology.”

Continued support

Most of the amputee victims will begin the fitting process for their initial prostheses, and continued support from the O&P community will be crucial.

“These folks in Boston, who are new amputees, are going to be going home, and at some point, all of the media attention around the event will lessen,” Calhoun said. “And as they go home, they need to be assured that they have connections, that they have strong family and friend support systems, but also that their insurance coverage is going to be there for them.”

“Now that the lights have faded and the cameras are starting to go away, I think this is the time that they are going to need support,” Holm said. “Don’t let time forget. People can continue to reach out and support these people.”

And according to Crandell, the number of amputees could increase as patients continue to undergo limb salvage surgeries.

“We have to work hard now for the folks that we have, but we also need to be able to do this for the duration to make sure that every person who has been injured as a result of the Marathon bombing gets the highest quality of care possible,” Crandell said.

Anyone interested in helping these individuals is encouraged to make a financial donation, send letters of support and encouragement to Boston hospitals and rehabilitation facilities, organize a local race or fundraiser in their own community or contact an organization directly to arrange alternate means of support. — by Megan Gilbride

Disclosure: None of the sources have any relevant financial disclosures.