By Nicole Ver Kuilen
The following is a firsthand account of lessons learned from the ten-week fellowship I experienced this summer as the Inaugural Fellow of the National Association for the Advancement of Orthotics and Prosthetics (NAAOP).
One year ago this month, I set out on a mission to raise awareness on behalf of millions of amputees like me living in the United States. I quit my job, recruited my family, and decided to take on a 1,500-mile triathlon down the west coast. Inspired by the Tom Hanks film, I called my journey “Forrest Stump.” It was by far the most challenging athletic endeavor I had ever attempted. I was determined to make it across the finish line, but I wondered whether I had a prosthesis that could survive the journey. What began as an effort to raise awareness for amputees has become much larger than I ever anticipated.
My story as an amputee began at age ten when I lost my leg to osteosarcoma. Since then, I’ve pushed myself physically to earn the right to be called an athlete. Yet, I’ve continuously come up against the same obstacle—having a prosthesis designed for walking when all I really want to do is run. The reality is that it is the only prosthesis my insurance covers. I find myself caught in a paradox where technology exists that could erase my disability almost entirely, yet few have access to it. That became the mission driving my advocacy efforts: To expand access to the most appropriate prosthetic technology for all amputees.
ALL ROADS LEAD TO OUR NATION’S CAPITAL
I knew I had a lot to learn about healthcare policy if I was going to make any headway. So, the next stop on my journey seemed like an obvious decision. The best place to immerse myself in policy and to create nationwide change is in Washington. As luck would have it, NAAOP was seeking an individual for their inaugural O&P health policy and advocacy fellowship this summer.
NAAOP believes that “an educated advocate is the most effective advocate,” and through this ten-week fellowship program they guided me in developing a proactive message to take to Capitol Hill. The fellowship provided me the opportunity to learn from the experts, namely Peter W. Thomas, JD, NAAOP’s general counsel, who is a disability lawyer and bilateral amputee; David McGill, JD, NAAOP president, who is an amputee and senior executive with Össur; and George Breece, the founding executive director of NAAOP. Throughout the summer I traveled from Washington for meetings at various clinics and professional organizations around the country to learn what each is doing to advance the field of O&P for amputees like me.
THE GATEKEEPERS OF THE FIELD
Once I arrived, I started to lay the foundation for my Washington education, beginning with a visit with the O&P Alliance. The O&P Alliance is made up of the leading national organizations representing the O&P profession. This includes the American Academy of Orthotists and Prosthetists (the Academy), the American Board for Certification in Orthotics, Prosthetics & Pedorthics (ABC), the American Orthotic & Prosthetic Association (AOPA), the Board of Certification/Accreditation (BOC), and NAAOP.
Each organization generously hosted me at its office and briefed me on its mission. The organizations’ missions span the scientific, research, professional, business, and quality improvement aspects of the O&P field. As a coalition, they collaborate on important federal and state policy measures. In a sense, they are the gatekeepers of the field.
To succeed in the mission of expanding access to prosthetic technology, it is going to take a collaborative effort by organizations like those belonging to the O&P Alliance to solve the multifactorial issues surrounding lack of access to appropriate care. As a starting point, I have identified four primary barriers the O&P profession must address to improve access to care.
HIERARCHY IN PROSTHETIC COVERAGE
Simply stated, amputees’ access to certain prosthetic technologies, and thus their mobility, quality of life, and functional/athletic potential is determined by their insurance coverage. In my experience, amputees who have the lowest level of coverage are those covered under most commercial insurance plans. These plans typically offer limited coverage for prosthetic care. The second level of coverage is provided by the Centers for Medicare & Medicaid Services (CMS) followed closely by the Veterans Health Administration (VHA). Amputees whose prosthetic care is covered through workers’ compensation, automotive insurance, or other litigation circumstances including injured active-duty military personnel in the Department of Defense (DOD) are often covered at the highest level, meaning their plan or program affords them access to the most advanced prosthetic technologies. However, how you lost your limb should not determine the level of care you receive.
While shadowing Thomas over the past few months, I’ve had the opportunity to meet with CMS, VHA, DOD, and United Healthcare (UHC). As the NAAOP fellow, attending these high-level meetings gave me an exclusive look at our fragmented healthcare system, but it also gave me hope that we can find innovative ways to address our nation’s complex web of coverage, whether through internal pilot programs, federal or state legislation, or healthcare regulation.
For example, the Extremity Trauma and Amputation Center of Excellence (EACE) was formed through legislation to enhance collaboration between the Department of Veterans Affairs (VA) and DOD, which operate separately but have an overlapping amputee population. Additionally, UHC is a large national insurer that covers millions of people with disabilities, including users of O&P care. I had the opportunity to meet with leaders from these entities who are working to expand access to care.
NONPROFIT SECTOR INCREASINGLY FILLS THE INSURANCE GAP
With decreasing coverage and rising costs of healthcare, thousands of amputees are looking to a growing number of nonprofits and philanthropic resources to cover the expense of prosthetic care. Although this does meet a need in the short-term, it is not a sustainable or equitable distribution of resources. To understand why this is happening and what we can do to solve it, we must ask ourselves: Why are we, as a society, choosing to provide uncompensated charity care?, and What are we losing by providing healthcare in this manner?
To answer the first question, I believe it comes back to an equation I learned shadowing Jan Stokosa, CP, board member and past president of NAAOP, at his prosthetic clinic in Lansing, Michigan, as part of my fellowship. The equation is:
Redefining what is possible is what inspires O&P clinicians to provide better care, and it inspires engineers to design technologies and components that better replicate human movement. When parts of this equation are not being fulfilled—such as by a lack of available technology or a prosthetist’s inability to innovate because of increasing administrative burdens—the outcome is limited. That’s why philanthropies have decided to step up in the care of amputee rehabilitations: They want to be part of what is possible.
But, we are also losing critical data and information by providing healthcare in this manner. Millions of dollars in uncompensated care, and potentially improved health outcomes, are not being reported to healthcare payer data systems, comprising important sources of information for future coverage gains. If we cannot prove that prosthetic intervention increases mobility outcomes, then we will not be able to make the case for its coverage.
Two organizations that hosted me this summer are tackling this challenge. AOPA, in partnership with the Amputee Coalition, has commissioned a number of studies by highly respected health economists and researchers, including Dobson DaVanzo and the RAND Corporation, to show O&P intervention saves the U.S. healthcare system money in the long term, providing value not only to the patient, but the payer as well. To showcase the initial Dobson Davanzo study and promote further research, the organizations created the Mobility Saves initiative (www.mobilitysaves.org).
Additionally, Hanger Inc., Austin, Texas, specifically James Campbell, PhD, CO, FAAOP, chief clinical officer, is leading a comprehensive program to capture medical outcomes of patients who use lower-limb prostheses across Hanger’s 800 clinics. Using the independent, scientifically validated PLUS-M instrument and Hanger’s Mobility Empowerment Score Card, Campbell and his research partners have already collected thousands of individuals’ outcomes data and are helping patients assess their own improvements in mobility. The research team has conducted a landmark study known as the Mobility Analysis of Amputees (MAAT I). The largest of its kind, the study measured the correlation of mobility to quality of life and patient satisfaction for people living with lower-limb loss. The findings demonstrated a significant direct correlation.
In the short-term, philanthropy is critical to filling the access gap quickly and showing what is possible for amputees; however, moving forward, we must ramp up our efforts to demonstrate that O&P care increases mobility outcomes and provides value to healthcare payers. To help, nonprofits must take a lead role in communicating their efforts to Congress and having a seat at the advocacy table.
AMPUTEES IN THE MEDIA VERSUS REALITY
There is a widening gap between perception and reality when it comes to amputees’ access to prosthetic technology and care. The stories told in the media focus on a fraction of the over 2 million amputee population in America, highlighting active-duty veterans and Paralympic athletes who typically have greater overall access to prosthetic technology. What the public and amputee community does not understand is that for nearly two decades insurance companies have been restricting coverage of prosthetic devices, diverting spending away from mobility-enhancing prosthetic technology toward less advanced, less costly prosthetic components available decades ago. This information gap has created a false perception that only certain amputees can benefit from advanced technology, and many amputees still don’t realize they need to advocate for a higher standard of care.
While speaking with Carrie Davis, director of patient experience at Hanger Clinic, she stressed the importance of advocating for the “everyday normal.” We need to share more stories of amputees who just want to play with their grandkids, or learn how to cook again, or run with their local running club. An amputee should not have to go to extreme lengths, or fit into the top 1 percent, to be able to access the technology that is designed for a wide range of amputees to help them get back into the community.
For more of these everyday normal stories to be told, we need an army of advocates who recognize the gap in access and are willing to share their stories, at the right time, in the right way, and with the right people. In addition to NAAOP, AOPA, and others, the Amputee Coalition is helping to build this army through a grassroots and lead-advocate program, designed with varying levels of commitment to get involved. For example, amputees can text “ACadvocacy” to 201-21 to send a pre-written letter to their state and federal members of Congress.
Moving forward, it will be absolutely critical for amputees to take charge of their own narrative if we want to close this access gap. When the time comes for this community to speak out in masses to upend this divide, it will be critical that we are informed, educated advocates who can take the right message to the halls of power.
PROSTHETISTS AND ORTHOTISTS AS PROFESSIONALS PROVIDING CLINICAL CARE
As a relatively small segment of healthcare, the O&P profession’s survival is dependent upon its ability to compete for representation in the larger healthcare arena. However, currently, the profession is battling severe misrepresentation, where prosthetists and orthotists are viewed more as suppliers of devices, rather than being recognized as providers of comprehensive clinical services, which happen to include the modality of providing a prosthesis or orthosis to enable function. In order to advance the O&P profession into the 21st century healthcare environment, this needs to change, not only at the policy level, but in the minds of fellow professionals on the rehabilitation team at the local level.
Fortunately, the gatekeepers of the profession, the O&P Alliance members, realize how these policies are perpetuating a misinformed understanding of prosthetists’ and orthotists’ roles in the treatment and care of amputees. Throughout the years, they have also identified a number of O&P champions in Congress and cultivated strong bipartisan support. As a result of these efforts, a bill has been introduced to specifically target the outdated policies, the Medicare O&P Improvement Act of 2017 (H.R. 2499 / S. 1191). The bill would separate O&P from durable medical equipment (DME), restore Congress’ original intent in defining off-the-shelf orthotics for purposes of competitive bidding, and ensure only qualified O&P practitioners can be reimbursed by the Medicare program. One major provision from the bill has already been enacted into law: the provision that recognizes the clinical notes of the prosthetist and orthotist as part of the Medicare patient’s medical record for purposes of determining medical necessity.
As a fellow this summer, I had the privilege of meeting two core proponents of the bill including Senator Tammy Duckworth (D-IL), co-sponsor of S. 1191, and Rep. Glenn Thompson (R-PA-5), sponsor of H.R. 2499.
As the bill’s provisions are enacted, they will set a critical foundation for all future O&P policy efforts and help ensure O&P practitioners are being recognized and rewarded for their education, expertise, skill sets, and scope of practice. However, there is still much to be done at the local level.
THANK YOU FOR THE FELLOWSHIP OF A LIFETIME
As I wrap up my fellowship, I wholeheartedly agree that “an educated advocate is the most effective advocate.” Although I shared many of my summer experiences in this reflection, I could not possibly have included them all. From my 20 Hill visits with the VGM Group, to meeting Minority Leader Nancy Pelosi (D-CA) and Senator Bob Casey (D-PA), to visiting the Children’s Healthcare of Atlanta O&P facility, the list goes on with once-in-a-lifetime experiences. This fellowship program with NAAOP is unique and an incredible way to learn health policy and advocacy from the brightest minds and immerse oneself in Washington life and culture.
I would like to thank NAAOP, all of the hosting organizations, and the donors who made this experience possible. They’ve added another highly engaged and well-trained advocate to the O&P field, and I’m ready to help as a soldier in the consumer movement, a policy advocate, and as a future leader.
Moving forward, I would like to challenge amputees everywhere to get more involved and to aspire to participate in this fellowship opportunity. We need more amputee advocates who can bring our collective voices into the rooms where decisions are made in our nation’s capital. The army has begun to form.
Nicole Ver Kuilen is forming Forrest Stump as a nonprofit advocacy organization with the mission to raise awareness and expand access to the most appropriate prosthetic technology for all amputees. She will be undergoing paratriathlon training at the Olympic Training Center and this fall will attempt to summit Cotopaxi in Ecuador with the Range of Motion Project in honor of the 28th Anniversary of the Americans with Disabilities Act. You can follow her journey at www.forreststump.org.