The MS Health Law and Strategy program is designed for mid- or senior-career professionals to develop strategy and drive innovation in health. Describe how the MSHLS will contribute to your career objectives. How do you expect this joint degree program to benefit you on a personal and professional level? (500 works max)
As the Director of Health Policy and Strategic Alliances and the in-house lobbyist at the American Orthotic and Prosthetic Association (AOPA), I currently oversee both the advocacy and research portfolios for the organization. I helped design the department I now run under the guiding principle that our policy positions must be supported by the evidence base. It has been my experience that our current healthcare system imposes unnecessary barriers to entry for healthcare technology and arbitrary access challenges for the patients that could most benefit from those advancements.
Since the start of my “official” career in this field in 2008, I’ve witnessed a massive transformation, both for the clinicians delivering healthcare services to patients living with limb loss/difference or limb impairment and the manufacturers of the prosthetic and orthotic devices delivered by those healthcare providers.
I say “official” because I am a second-generation professional working in the Orthotics and Prosthetics field and have been immersed in it all of my life. My father has been a certified prosthetist since before I was born, and I remember fondly the days when attendance at the annual society conferences marked the beginning of our family vacations. In fact, my father attended Prosthetics school at NYU in the early 80s.
Over his 42 years as a prosthetist, he’s seen, and shared with me, exactly how innovation can transform lives. His very first patient wore a wooden prosthetic socket, and he now provides care to patients who have undergone osseointegration surgery and no longer need a traditional socket to successfully ambulate on their prosthetic legs.
Though I am not a clinician providing care to patients, I have built a role for myself in the orthotics and prosthetics field, a role that utilizes the best of my talents and allows me to live a mission-driven, motivated existence with a passion for my purpose. I see the MSHLS program as an opportunity to learn and grow so I can continue to serve this profession to the best of my ability.
What interests me most about this program is the positioning of innovation within the framework of healthcare law and policy fundamentals. I haven’t see any other program in the US that underscores that connection quite like the curriculum offered through this MSHLS. I believe I am the type of candidate that will benefit, specifically, from that balance.
My chosen field sits at the intersection of art and science; it is niche and complex. These factors make it, and the patients it serves, particularly vulnerable to a healthcare system that focuses on service in terms of units rather than value. I am looking forward to gaining new competencies and applying the concepts offered through this program toward efforts to address the challenges facing the orthotics and prosthetics field and the patients it serves now and in the future.
Describe a significant leadership challenge in your life, possibly even a failure. What did you learn and how did this experience shape your professional aspirations?
A significant leadership challenge in my career, thus far, occurred following the acquisition of our family’s prosthetic and orthotic practice, Beacon P&O, in 2015. When we began the process, I was directing our company’s marketing efforts and developing a program to address the access challenges that our patients were facing as a result of inadequate insurance coverage. I had just finished my graduate studies at the UNC Chapel Hill’s School of Journalism and Media and was completing my thesis work on mobilizing patient populations to advocate through online communications platforms. During the program, I realized that my future was in advocacy work, not our family practice.
Over the following year, I assisted my father in every aspect of the due diligence process and facilitated the collaboration necessary to bring us to an offer we were happy to accept. It was the most immersive version of business education possible, with real-world benefits and consequences in its resolution.
Following the acquisition, I was offered the director of operations position for the five-facility organization once owned by my family. Though it had been my intention to leave the company, I accepted the new challenge as another growth opportunity.
After a few months, I realized that the transition was taking a toll on my relationship with my father. We had always met in the middle regarding aspects of our family business; he made decisions about clinical matters and I helped navigate our operational decisions. In this new environment, the line where we used to meet no longer existed. As an example, part of my newly assumed responsibility involved terminating employment of a clinician who had been with the company, and whom I had known, since I was in high school. I found myself entirely lacking the ability to lead effectively through this challenge. The work had grown to be too personal, and I was too emotionally invested.
At this same time, I was receiving recognition for my volunteer work as a Board member for the National Association for the Advancement of Orthotics and Prosthetics (NAAOP), on the Mobility Saves committee for AOPA, as the director of government affairs for the North Carolina Orthotic and Prosthetic Trade Association (NCOPTA), and working with our local amputee support group as a healthcare advocate.
These volunteer roles served to define my strengths as I built my professional identity beyond that of “Eddie White’s daughter.” After ten months under BCP Group ownership, I gave a lengthy notice and began the process of hiring my replacement. I took a leap into the unknown, with no job lined up, but with confidence that I had something to offer the orthotics and prosthetics profession. Shortly after, I landed my dream job at AOPA.
Now, after six years at AOPA, as I explore my next transformation, I find myself poised to take a leap, again. While I remain uncertain as to where I will land, I am confident that I will arrive in that new place a better version of myself.
This post is a direct copy of a paper published for Dr. Vaughn Upshaw’s Principles of Public Health Leadership (PUBH 791)at UNC Gillings School of Global Public Health. I am endlessly grateful for the opportunity to grow as a leader through UNC’s Public Health Leadership program.
As I take stock in how far I’ve come in my career, I would be remiss not to acknowledge the attributes that I believe got me this far. My passion and commitment to cause are the first characteristics that come to mind. Many still compliment me on these attributes today.
I am almost certain that it was solely my enthusiasm for the orthotic and prosthetic profession and the patients we serve that opened so many doors for me over the years, but once those doors were open, I was motivated to take advantage of the opportunities that I was offered.
I also had the good fortune to learn from and be guided by several accomplished mentors who were transformative leaders in the profession, mentors that I continue to learn from today. They created opportunities within their organizations and invited me to tables where other leaders were gathered that I likely would not have not had access to otherwise. I always showed up when invited, and sometimes even when I was not. Peter Thomas, general counsel for the O&P Alliance and a long-time mentor, recently commended me for making the most of the opportunities that have come my way.
I believe in myself and my ability to make a positive impact in this world and I am passionate about working towards goals that are bigger than myself. However, Koh and Jacobson emphasize the need for public health leaders to move beyond passion and to develop skills that are more expansive than those required to run a single organization. In this paper, I will outline my leadership philosophy and goals, and my commitment to personal growth in the pursuit of becoming a more effective public health leader.
Leadership philosophy, guiding principles, and commitments
I strive to be an adaptive and dynamic leader who facilitates the engagement of an inclusive and diverse community of stakeholders to build commitment to and support for the mission of improving patient access to orthotic and prosthetic care. I strive to lead with integrity, to communicate openly and honestly, and to accept responsibility for my actions as I work to develop health policies that reflect the needs of individuals living with limb loss, limb difference, and limb impairment, and the orthotic and prosthetic clinicians providing their care.
As a public health leader, I believe in the guiding principle that health is a human right. I believe that healthcare inequities and health disparities plague members of Black, Brown, and rural communities, and I am committed to working on projects and establishing programs through my organization, and other organizations where I have influence, that will mitigate the harmful practices that have led to and continue to create these inequities.
I am committed to using ethical analysis to determine what actions should be taken and why they should be taken when proposing policies that will impact the members of my organization and/or the patients they serve. Furthermore, I will challenge myself to look beyond my organization and our patient populations to understand the broader societal impacts of actions proposed and taken to mitigate any potentially negative impacts of these decisions.
Finally, I am committed to growing the pipeline of public health leaders in the orthotic and prosthetic profession. The lack of existing, credentialed public health leaders in the field poses challenges to building a shared vision that is guided by public health principles. I believe it is important to increase awareness of public health practice and engage orthotic and prosthetic professionals in opportunities that will foster their growth and create a sustainable pipeline for future public health leaders in this field.
A note about personal integrity and ethical leadership
In my current role as the director of health policy for an association that represents businesses, it could be quite popular for me to take a position that empowers companies over patients, especially when that power dynamic isn’t clearly on display. Companies are, ultimately, the entities that pay the membership dues from which my salary is allocated. To clarify, I have never been put in a situation where I’ve been pressured to act in the best interest of a company over the patients they/we serve, but I recognize the possibility and the importance of using an ethical framework for decision making. The responsibility to make health policy decisions goes far beyond the direct requests and needs of our members; we are working to establish policies that are supported by evidence, both social and scientific, to improve quality of life for our patients.
At times, it can be challenging to get past all the vision statements and espoused idealism of the companies to dig into the potential negative impacts decisions. Policy positions must be assessed critically, to account for the possibility of unintended consequences. While good intentions may be inherent in the policy language that I am responsible for putting forward on behalf of my organization, intention means very little if legislation is passed and rule making results in a negative impact on a member of the community I represent or society at large. Balancing the possibility of unintended consequences with the need to take action is one of the hardest aspects of my job.
Building an inclusive community of diverse stakeholders
The orthotic and prosthetic profession is small and often insular. Recent efforts have been undertaken to expand AOPA’s strategic alliances, to build a more inclusive and diverse group of stakeholders and to promote the healthcare team approach to caring for our patient populations. In addition to expanding my memberships in allied health organizations and volunteering for committees and task forces when possible, AOPA is working to increase the engagement of our volunteer leadership through the engagement of our Medical Advisory Board, which I oversee.
AOPA has also engaged a consultant firm, Calling All Allies, to help the members of our team develop our own leadership practice in diversity, equity and inclusion. This will be instrumental as we continue to work to grow a more racially and ethnically diverse profession and address the health disparities of our Black and Brown patients.
Example: inclusivity and assessing decisions for unintended consequences
Therapy groups bring concerns to Congress regarding the American Orthotic and Prosthetic Associations (AOPA) keystone legislation
Earlier this summer, the American Occupational Therapy Association (AOTA), the American Physical Therapy Association (APTA) and the American Society of Hand Therapists (ASHT) brought concerns about the Medicare Orthotic and Prosthetic Patient-Centered Care Act (HR 1990/S 2556) to the Congressional sponsors of the legislation. HR 1990/S 2556 is the American Orthotic and Prosthetic Association’s keystone legislation and seeks to distinguish the healthcare services required by individuals living with limb loss, limb difference and limb impairment from the commodity-based nature of durable medical equipment provision. The therapists’ concerns focused on the fear of potential unintended consequences associated with the implementation of the law through the regulatory process, specifically that Medicare would regulate the law in a way that would challenge the ability of physical therapists, occupational therapists, and hand therapists to bill for orthotic and prosthetic services.
Despite a call to arms and defensive posturing from some of our organization’s external advisors, I believed it was most important to bring all the stakeholders to the table to determine what could be done collectively to mitigate any negative impacts to therapists and their ability to care for their patients.
Growing leaders in the orthotics and prosthetics profession
Currently, there are not many resources for leadership development within the orthotic and prosthetic profession. There are even less resources for developing volunteer leadership within the associations and organizations representing the field and its patient populations.
In the article titled, “Growing leaders in a professional membership organization,” M.E. Shekleton writes about the work of American Association of Nurse Anesthetists (AANA) to establish pathways for leadership development within the national organization and state-based chapters. The article underscores the importance of committing resources and developing infrastructure that supports leadership development activities, in order to grow leaders in the profession.
The lack of formal pathways for leadership development makes the task of growing leaders difficult within AOPA’s volunteer structure as well as the orthotic and prosthetic profession at large, but these efforts are vital to support and implement the change needed to serve the mission of increasing access to care for orthotic and prosthetic patients.
As a public health leader, I am committed to advocating for the resources necessary to grow public health leadership within my profession. I am committed to helping build and support the programs designed to grow leaders and to teaching and mentoring the next generation of public health leaders that will carry the vision of access to ability forward.
Example: Commitment to growing leaders
The gift of mentoring, Nicole Ver Kuilen—the future of advocacy for ability
It has been the honor of my life to mentor Nicole Ver Kuilen. At the age of 10, Nicole lost her leg to osteosarcoma. At the time, all she wanted to do was play with her friends, like most kids do. She wanted to run on the playground and play in the water, but her insurance company would only cover one prosthetic limb, and it was the most basic, lowest cost model available. It could not be submerged in water and was not safe for her to run on, but the insurance company said that those activities were not medically necessary and therefore she did not “need” a different prosthesis.
Sixteen years later, during her first trip to Capitol Hill to advocate for access to care, Nicole described the true culprit of her disability. She said it was not the fact that she had lost her limb to cancer that made her disabled, but the denial of access to appropriate technology and prosthetic care that kept her from having the ability to live an active life. I recorded a call to action from Nicole to the community that day, and have remained committed to her growth and advancement as a leader ever since. I currently serve on the Board of Directors for Forrest Stump, Nicole’s nonprofit advocacy organization, and continue to provide support and guidance as a mentor, but if I am being honest, in some scenarios, she is the leader and I am the follower.
Just last week, we hosted Nicole as part of the keynote for AOPA’s National Assembly in Boston. She took the stage to share her story and make the case for the importance of advocacy for patient access to ability. She introduced and interviewed former Congressman, Erik Paulson as part of the program. Nicole has, at every turn, reinforced my personal commitment to advocating for policies that recognize the medical necessity of physical activity and support access to activity-specific prostheses. She is my inspiration.
Developing my leadership skills through the mentorship of others
As I described in the previous paragraphs and outlined in the example above, I am personally committed to mentoring as part of an effort to grow leaders in the orthotics and prosthetics profession. I also believe that mentoring others will help me develop my own leadership skills and will challenge me to continue to evolve as a leader by helping me stay informed about the issues facing professionals in the field that are at a different point in their careers. It will also help me continue to improve my communication and teaching skills.
To hold myself accountable for this personal growth goal, I will commit to seeking and engaging in teaching and training opportunities that connect me with individuals that are in early stages in their orthotic and prosthetic careers. Specifically, I will reach out to the educators in the orthotic and prosthetic MS programs to volunteer to guest lecture and serve as a resource for students. When appropriate, and within reason, I will take on mentoring responsibilities for individuals that express engaged interest and a desire to work more closely with me directly.
Becoming a more adaptive, and therefore effective, leader
One thing I could do to be a better leader is to learn to how to switch between leadership styles based on situations and the needs of the individual or community with which I am engaged. I have found that I am most comfortable when I am, “being myself,” but much of the reading assigned in this class discusses the value of being an adaptive leader, one that can navigate situations employee necessary skills to engage particular individuals or groups.
This skill of switching between leadership styles is one that I have observed in other leaders, specifically my mentors Michael Oros and Dave McGill. While I may exhibit this ability in limited situations, I am now more aware of the potential friction that my constant enthusiasm for and espousing of “the dream” may create for individuals who are not motivated by visionary leadership.
My plan to grow my skills in this area and become a more adaptive leader is to develop an inventory of my leadership experiences, noting the individuals and communities for which I am responsible for leading, and documenting an assessment of my effectiveness in each particular situation. Specifically, I will document if the leadership style used was effective and if I think a different type of leadership style would have been more effective. My hope is that with practice, the code switching will become more natural and authentic.
Conclusion
It is my hope that I will always strive to grow, that I will continue to remain committed to being a life-long learner and challenging myself to adapt as a leader and follower. I hope to carry forward my father’s legacy in service to individuals who have lost limbs, experienced limb impairment or were born with limb difference. Most of all, I hope my work makes a difference.
This week I will participate in a ceremony as one of four nominees for the O&P Woman of the Year Award. I am honored to be in the company of the other women who were nominated, and I am grateful to the individuals who believe in my work and service to the O&P profession enough to have nominated me. While this accolade feels premature at this point in my career, I still have so much to do, so much personal growth to undergo, so many goals to achieve and challenges to overcome, I am proud of the accomplishment nonetheless. I am also hopeful that through this recognition, I will be able to use the platform to elevate my advocacy work and inspire others to join the cause of increasing access to ability for all.
I feel comfortable sharing here. While it’s still a “public” space on the Internet, it is highly unlikely that you’ve reached this blog without looking for it. I don’t like posting too much personal info in social media spaces; it feels ego-driven and disingenuous every time I start to draft a post implying that the details of my experiences warrant the immediate awareness of others. Social media also makes things feel less real to me. That feeling is personal and I don’t knock anyone else who feels differently; it’s just my personal preference. This space is different for me.
I know very little about most things, and surely the things I know a lot about are a total snooze fest. Today, I feel like sharing my experience might help me better understand my situation and it might help others. I welcome thoughtful dialogue and suggestions, but not pity. I am not a poor thing; I am a strong woman who tackled a problem with the help of my favorite human, Joe Hall, my loving family and friends, and an amazing, badass named Dr. Amy Broach. So, here it is . . .
A week ago, I had surgery; left oopherectomy, bilateral salpingectomy, endometrial ablation and a progesterone implant inserted for hormone regulation. I am healing. I am at peace with my decision. There are so many women who have shared their experiences with these diseases/disorders and there’s something I’ve noticed underscoring all of them, a lack of information and understanding.
Since 2015, so much has happened to/inside my body. The journey has made me painfully (literally) aware of the black hole that is the institutional understanding of female organ health. Fertility? They’ve got that bit carved out into its own lucrative bucket of “healthcare options,” but the fundamental understanding, the why, still seems elusive. I did not get an answer for why an otherwise healthy 30-something-year-old female would present with persistent complex-cell cyst growth and severe endometriosis. Hormone imbalance. Why? Nothing. I was offered a solution to help me get pregnant before I was offered treatment options to address the two disorders, because they don’t exist. Symptoms can be managed and the disease “kept at bay.” There is no cure other than removing the growths and the organs they grow on. Seems extreme.
I get that my body is designed to create life, that’s pretty radin the grand scheme of things, but something went wonky along the way and I believe there should be treatment that doesn’t involve cutting entire organs out of our bodies that will ultimately lead to other health issues down the road. Throughout my experience, the question always came back to pregnancy; “Do you want to have babies?” Even if I had tried some of the more advanced and expensive options, my environment was not conducive to growing another life. It’s important to note that I could use “we” here in place of “I.” It would be factual, but Joe is not the kind of man to ever imply that he should have any control whatsoever over decisions about my health unless I am unconscious and he has to make them for me. His endless support has been invaluable.
A year ago, I spent the night in the ER with an episode of ovarian torsion. It’s super painful and can present like appendicitis, at least it did for me. This incident helped Joe and I realize the need for immediacy in dealing with my condition. Endometriosis, by the way, can only be diagnosed by diagnostic laparoscopy or MRI, as I understand. The symptoms are well documented, however, so my doctor worked up my treatment options without a definitive diagnosis. We jumped into a treatment protocol, which involved forced menopause to keep the cysts on my ovary from growing and the endometriosis from spreading.
The Mayo Clinic defines Endometriosis as an “often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs.”
Winner, winner. The endometriosis has grown around my large intestine (colon) all the way down to my rectum. I can’t help but wonder, how rare is this really? The solution? Another surgery. The plan? Wait and see. The progesterone should keep it from growing/spreading, but we’ll have to see how bad the symptoms end up being. It feels like the world is saying your disease is “just a side effect of being a woman.”
There are no answers. I found the following recommendation in a report published by NIH in 2017:
“Two topics summarize the new recommendations: (1) a need for our field to thoughtfully and actively determine what data are needed to quantify endometriosis disease burden and to facilitate discovery that takes into account phenotypic variation and (2) endometriosis must be addressed and consistent data must be collected for research and clinical needs across the life course, in adolescence, pregnancy, and throughout adulthood. Adolescents in particular are an underserved group with high morbidity and social impact, and yet this age is likely the critical window for disease etiologic discovery and intervention.”
My career involves a lot of boots-on-the-ground advocacy. As immersed in that world as I am, it’s often difficult for me to think about advocacy as it applies to my own circumstances. I’m good about advocating for myself in the moment, asking for exactly what I need. But I’m struggling to see the path for a movement on this issue, or I’m missing it. I’m frustrated by the lack of research being done, that the most basic questions remain unanswered. I’m saddened by the stories of my friends living in pain and the women unable to accommodate the growth of a fetus or bring a baby to term.
Since I can remember, I’ve been granted the privilege of bearing witness to individuals regain mobility after suffering limb loss or gain mobility after being born with limb difference. I never had to be introduced to the concept of limb loss; I’ve never known a world without people living with limb difference. My Dad gifted me this perspective by taking me to work with him when I was a little girl. It seems like it was often. Occasionally, I’ll walk into an older building and the scent will remind me of that old Hanger clinic on Poole Rd.
The facility was in a poor part of town. Dad provided care to an underserved population in an underserved community. Most people living with limb loss are underserved, due to the condition of our healthcare system, but this was a particularly underserved area. I remember the layout of the building; canes sat in a round holder to the left and a walker to the right of the front door. I remember the reception counter spanned three-quarters the front of the waiting room; my Dad’s office was on the right. A long hallway down the left side of the building opened up into a big (I was quite small) lab in the back, with sand boxes and machines and my friends, Mike and Tony.
The gait room was my playground, and Dad’s patients, my playmates. I am aware that it could be viewed as insensitive to have a small able-bodied child running around a prosthetist’s office, swinging on the parallel bars while someone tried to walk in them for the first time after an amputation, but the way Dad tells the stories, no one was offended. In fact, my Dad took care of many of those patients through the end of their lives, and still provides prosthetic care to a few of them today.
I was obviously too young to appreciate the role those experiences would play later in my life. My memories of time and space are likely skewed, as is the case with all recreations of the mind, but my sense of it all hasn’t changed a bit.
I’ve been in countless O&P facilities since my youth. I’ve done a little bit of everything I could do in O&P without credentials, from transcribing notes and helping in the lab in my teens, to opening new facilities and helping grow our company in my twenties, and ultimately running and helping sell our family-owned business in my thirties. There are several generations of people with similar stories to tell.
My Dad has been a prosthetist all my life, my mother a nurse. They were volunteer rescue workers in the small town where I grew up and took me on a “call or two” when the pagers went off in the middle of the night. Their dedication to their careers, to taking care of their patients, undoubtedly influenced and shaped my own identity. And though I do not work directly in healthcare, it is central to my personal/professional motivation and mission.
Even during my short photojournalism career, one of the most meaningful stories I ever covered was a year-long piece about a courageous survivor of breast cancer. I met her and her family the day she was diagnosed. Soon after, I scrubbed into her double mastectomy surgery. I documented the toughest moments of her experience, but also the hope. I spent countless hours in her home and with her family. I sat beside her during treatments, and I rushed to be there when she decided to shave her head because she was tired of losing her hair.
In some ways, that experience would prepare me for David. Though, nothing can really prepare us for those magical people that come along and change our lives.And in referencing my hero, I bring this rambling full circle. David is probably the reason I made my employment more permanent at Beacon after I moved back to North Carolina. Even after he was gone, after I finished graduate school, I couldn’t convince myself that there would ever be anything more rewarding than a career in O&P.
I believe it, still.
We’ve made encouraging advancements in this profession, but we can do more, we can be better. We have to push the boundaries to better serve those who rely on our services to maintain mobile, functional lives.
This is my starting point, every day. I ask myself, what can we do today to make things better for people living with limb loss and mobility challenges and the clinicians providing their care. From there, it is easy for me to work tirelessly on projects and initiatives that will improve the O&P profession.
I feel so fortunate to work for AOPA, an organization that literally includes my professional goals and ambitions in its mission statement.
