Four organizations, with thousands of volunteers and contributors, serving countless amputees all over the world. These people — O&P practitioners and physicians alongside philanthropists and people from all walks of life — have found a way to help those in need, some of whom did not even know they had a chance.
Through limb banks and O&P recycling programs, many people who have lost limbs can get the care necessary to lead a full life.
Need for outreach
“It could be argued that there are plenty of places, including the United States, where people need prosthetic services but are not able to get them,” Rob Kistenberg, MPH, CP, FAAOP, chair of the U.S. National Member Society of the International Society of Prosthetics and Orthotics (US-ISPO) and clinical director of Sonrie Ministries Inc., an organization that provides prosthetic care for amputees in Central America and the Caribbean said.
There are a number of reasons for this deficit, ranging from the lack of insurance to a lack of education about O&P services.
Amputees in many developing countries rely on the charity of those who have prosthetic devices to donate. Those in the United States, however, do not have access to used devices because of regulations regarding reuse of health care components and practitioner concerns over liability. Several aid organizations have surfaced to combat this issue. Limbs for Life in Oklahoma City, for one, was established to be a financial bridge for amputees in the United States who were unable to afford their prosthetic care.
After a year or so the organization began receiving requests from people who had extra components they no longer needed, said Craig Gavras, cofounder and executive director of Limbs for Life. This helped establish the organization as an international program that provides prosthetic components at no cost to indigent amputees overseas.
Coincidentally, it was shortly after the establishment of Limbs for Life there was a devastating earthquake in Izmit, Turkey. To maximize the aid for those who were injured, Limbs for Life and Physicians for Peace worked together to form a mission trip, taking advantage of the donated prosthetic components.
Because of natural occurrences such as this, as well as other misfortunes like war and birth defects, the number of people around the world who are in need of O&P care is never ending. Jack Richmond, president of the Barr Foundation, receives requests each day for donated prostheses.
“It is unbelievable how much need there is,” he said.
One example of the extent of the Barr Foundation’s outreach is in its work with the Rotary International and the Basra, Iraq Prosthetics Project. For typical missions, the Barr Foundation provides donated prosthetic components for 20 to 30 people. In just the first few months of the Basra Project, the Rotary has requested components to fit 500 amputees.
Limbs for Life, too, has sent components for 100 amputees to the Rotary for the Basra Project, with an additional commitment to donate 100 each year for the next 5 years.
More than voluntourism
The idea of helping other people is not an unfamiliar concept to O&P practitioners. The reason that many become practitioners in the first place is to provide a service for patients in need.
“I think that the general altruistic nature of folks who become prosthetists and orthotists is fairly inherent,” Kistenberg said. “A lot of people want to help.”
On the other hand, he knows from personal experience that establishing a clinic in a developing world country takes more effort than most people can or want to put forth. Often, people — not just prosthetists and orthotists, but physicians and other medical health care practitioners as well — will turn their unused vacation time into a week of voluntourism. In this way, they travel somewhere, but spend their time volunteering their services.
Kistenberg and the others involved with POCC considered that when creating the program. POCC makes it easier for O&P practitioners to get the materials they need for trips like this.
The leaders of these missions also make it easy for people to donate time, components and money. According to Gavras, between 5,000 and 8,000 people donate to Limbs for Life. In addition, the organization holds several large events throughout the year, including golf tournaments and a black tie event that brings in about $400,000 annually.
Gavras, whose injury in the line of duty as a police officer resulted in a transfemoral amputation, knows firsthand the importance of having access to proper prosthetic care. He promises donors that, “If you donate today, your money goes to an amputee tomorrow, and in 2 weeks you can see your success.”
“What we tell people is that we don’t do research,” he said. “The cure for amputees has been there for years. It is a prosthesis.”
Call for help
There are a number of different ways to get involved. Practitioners and technicians can travel with mission groups, offering their expertise to teach people in developing countries how to fit patients. Those who cannot travel may break down prostheses into components, sort supplies and assemble packages to be shipped. Practitioners and patients with “gently used” devices should donate them to limb banks across the country, so that they may help an indigent amputee walk again. For those without time or components to spare, there always will be a need for monetary donations to fund these programs.
“The bottom line is this: Everyone should do something — either contribute time, efforts, expertise — to help those that are less fortunate,” Kistenberg said.
In addition to the benefits to those overseas, Wills Moore, director of operations for MedShare International in Decatur, Ga., added that another benefit of component recycling is that it reduces the pattern of excess in the United States.
“I think it is important for people to know that there are ways to be part of something that is addressing a dual need: keeping the waste out of our landfills, which is a big part of our mission, but more importantly saving lives and changing people’s lives in the developing world,” he said.
Putting these recycled components to use is the intention of this outreach, however.
“The saddest thing is that [a component] sits in the back room and doesn’t get used,” Richmond said.
To combat this result, his request is simple: “Don’t let the [device] sit on the shelf when someone, somewhere, could use it. That is what it was created for; give it the opportunity to change somebody’s life.”
When challenges arise
Any number of challenges may arise while working with other countries, especially those in the developing world. Outsiders on mission trips should be aware of the cultural differences and language barriers they will face when heading into a foreign country.
In some cases, caregivers overseas may have concerns when an organization drops off an incorrect amount of supplies, or the wrong supplies entirely. POCC is trying to combat that potential problem by creating an online system for people in the developing country to select the type and amount of supplies they need, Kistenberg said.
But POCC is not the first to attempt such a large-scale effort. The nonprofit MedShare has been doing similar outreach since 1998: collecting surplus medical supplies and equipment from the U.S. health care system, and shipping the donated goods to hospitals all over the developing world. For this reason, US-ISPO teamed up with MedShare to set up POCC.
With its online system, MedShare has found additional issues regarding the computer technology necessary to use the system.
“The Internet is still not well established, and the infrastructure is not there in a lot of the countries we are working with so that can create bottlenecks sometimes,” Moore told O&P Business News.
Cultural boundaries also may affect the outreach, Gavras pointed out. In Turkey, for example, there may be issues with a male prosthetist or technician treating a female patient.
“We have to be sensitive to that and make sure we have a female technician or a prosthetist with us,” he said. “That doesn’t happen often, but it is something we have to be cognizant of.”
Limbs for Life allows the prosthetic caregivers from that country to decide on questions of patient care, depending on the patient’s need and the caregivers’ ability to treat the specific case. This way, the caregivers are able to weigh their treatment options and workload, and are not overwhelmed by the team from the United States.
Another drawback to working with indigent patients is the chance of corruption of the system. There always is a chance that the person who is in charge of the clinic when the U.S. team is not there will try to profit from the donated devices, or show favoritism in dispensing care. To prevent this problem, several organizations — like Limbs for Life, the Barr Foundation and POCC — have put in place measures like applications, reference and background checks, screening processes, and mandatory follow-up procedures.
Despite any other difficult situations that may crop up, these practitioners have found that the best way to ensure limb banks and component donation programs are sustainable is to establish self-sufficient clinics in the countries.
“That usually means that you end up with someone there in the area who is working with you and you plan to come back,” Richmond said.
Most other issues can be worked out, as long as people are committed to the success of the mission.
Future of humanitarian outreach
Limb banks and component recycling programs may have started out with a few people donating what they could, but it has expanded significantly over the years. And as more and more people become aware of this type of outreach, there is no reason to think the growth will stop anytime soon. The hope is that the effort will become effortless.
Kistenberg would like to see O&P outreach become more organized in the near future. He and his colleagues at POCC have been working toward that end by organizing inventory through software, raising money to pay volunteers to do more, and arranging larger-scale distributions.
Limbs for Life plans to make a greater effort in the Caribbean over the next 10 years. In the meantime, Gavras requests more basic help from people looking to get involved.
“The important thing is making sure that the amputees have an opportunity to get back to a normal life, whether they just want to go to the grocery store or if they want to get back to work,” he said. “Whatever they want to do, we want to make sure we are in a position to help them.”
Richmond hopes to get more practitioners involved in this outreach, and is working together with other organizations to plan an international mission symposium to coincide with the American Academy of Orthotists & Prosthetists Annual Meeting in Atlanta in March 2009. The day-long symposium would provide information regarding the available resources and the ways to begin and sustain a program overseas.— by Stephanie Z. Pavlou
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