Comprised of artists, makers, philanthropists and thinkers, the Range of Motion Project — a grassroots nonprofit group — is designing and developing custom prostheses and supplying them around the word to those in need.
Taking a chance
Eric Neufeld, CPO, FAAOP, president and co-founder of the group; David Krupa, CP, co-founder and CEO; and Patrick Mathay, executive director, wanted to make a difference.
“We realized that amputees are not disabled because they are missing a limb, but because of a missing prosthesis,” Neufeld told O&P News.
In fact, the WHO estimates that more than 80% of the total amputee population lives in developing nations, yet fewer than 3% of amputees have access to prosthetic care.
“There is a strong link between disability and poverty,” Neufeld said. “If you are living with limb loss in a low-income area, odds are you will live and die before finding the technology needed to walk again.”
Neufeld and his team wanted to change that.
In 2004, during prosthetic residency at Scheck & Siress, Neufeld and his colleagues noticed amputees being brought in from abroad as a part of a medical outreach program. They figured for every one patient treated, there were thousands more without access to care.
They began working with volunteers and supporters, and by 2005, launched the Range of Motion Project, or ROMP, out of a small lab in Zacapa, Guatemala.
‘We believe in mobility’
ROMP’s mission is to eliminate ambulatory disability by providing a preferential option in orthotic and prosthetic care, Neufeld said. By supplying prosthetic limbs and [orthoses] to those who do not have access to these services, the group’s aim is to return patients to their families and communities as productive, healthy individuals.
“We believe in empowerment through mobility,” Neufeld said. “Not only ambulatory mobility, but mobility from one social group, class or level to another … unhindered by unjust distribution of health care.”
The group operates using a three-pronged approach — local investment, sustainability and clinical care.
ROMP trains local practitioners to provide services and delivers care by purchasing new components, inventing custom components and refurbishing donated components to fabricate devices.
“There is an ongoing equipment drive that we host in the United States, where we collect prostheses from those who do not have a need for them anymore,” Neufeld said. “Because of industry regulations, these components cannot be reused in the United States, and each year millions of dollars of gently used parts are thrown away.”
ROMP harvests the parts and places them through a series of quality checks in the United States and Guatemala. Each patient sees a qualified prosthetist and receives a combination of new and restored components as working parts of their prosthesis. They are then fitted with a lightweight, high-impact socket and seen for ongoing follow-up and gait training.
Cost and response
ROMP’s founders believe that patients’ needs override the socioeconomic constraints they may live in, and that is why they rely on grants and donations, not high-priced services, to cover administrative expenses.
“Our goal is to demonstrate to the world that … mobility is a right of those in need, not a privilege of those [who] can afford it,” Neufeld said.
Patients enter a contract upon receiving a device, which outlines a system of suggested donations. There is no required donation for services, Neufeld said, and ROMP will not refuse care to those who cannot afford to donate.
“We have certain patients [who] can make a $300 donation and some who can only afford $5, but regardless of the amount, the level and quality of care provided is the same.”
The low cost is a big advantage, particularly for young children who could outgrow a prosthesis and those with no insurance coverage for industry prostheses.
The devices have been well-received by users, Neufeld said, as well as those close to the O&P community. “Within the amputee, professional and local arenas, ROMP has received ongoing support and encouragement … [and] some patients have really excelled.”
Patients like Santiago Quintero, who lost both feet to frostbite before going on to summit Mount Everest; like Julexy, who founded the Bionic Fashion Show, an annual event where youths display their prostheses on the runway; and like Vairo Chavez, a double transtibial amputee who built the Loren J. Mallon Centro de Rehabilitation, ROMP’s primary patient care facility in Guatemala.
The success has not come without challenges, however, Neufeld said.
“Operationally, the economics of prosthetics and global health present our biggest challenge. Traditional technologies are unavailable in many poor parts of the world due to the high cost of devices and scarcity of qualified practitioners. So, even with advances in low-cost production, there is still a considerable gap.
“Also, we have employees and stakeholders in multiple countries, which means communication is paramount. Since we work in areas that are still developing telecommunications, staying connected can become difficult.”
The team is finding ways around that, Neufeld added.
“We overcome these gaps by working to understand the context our patients live in and providing tools and training to the local practitioners so that they can provide care on the ground.
“We partner with local governments, non-governmental organizations, academic institutions — whatever it takes to serve our patients … because that is the only way to make lasting change.”
As for the economics, ROMP is investigating new technologies like 3-D printing. ROMP leaders believe this could help solve the supply chain puzzle, bringing device production directly to patient communities.
A look ahead
Much has changed in the decade since ROMP was born, Neufeld said, but its core mission has stayed the same: “To provide equal access to prosthetic care … enabling those with disabilities to regain their independence and redefine their human potential,” the company’s website states.
ROMP appears to be accomplishing its goal. Since its launch, the organization has raised more than $5.1 million in total donation value, $1 million in revenue and has fitted more than 3,000 patients with fully custom made prostheses. It has established full-service labs, mobile clinics and expanded operations throughout the United States, Mexico and Ecuador.
The organization also launched “Climbing for ROMP,” an international public awareness campaign intended to get people active and create funding for ROMP patients. Neufeld and colleagues hope to raise $50,000 before January 2016.
ROMP wants to help patients become happier, healthier and more productive members of society, Neufeld said. They want to bend the arc of technological advances to benefit those who need it most. As such, the organization is constantly working with local and national partners to develop forward-thinking methods of care.
The reason is simple, according to Neufeld.
“Those involved with ROMP want to help simply because we can,” he said. – by Shawn M. Carter
- ROMP | Range of Motion Project. Available at http://rompglobal.org/index.html. Accessed June 23, 2015.
Disclosures: Krupa, Mathay and Neufeld report no relevant financial disclosures.