Written by: Lauren ‘LP’ Panasewicz, Director of Development
In April, I was fortunate enough to join the Amputee Coalition for their ‘Hill Day’ in DC. The Amputee Coalition is a non-profit that empowers people affected by limb loss to achieve their full potential through education, support, and advocacy. They also run the National Limb Loss Resource Center that provides reliable resources and information for amputees at no cost.
The point of Hill Day was two fold – 1) to inform elected officials of the Insurance Fairness Act for Amputees and ask that it get passed at the federal level and 2) ensure funding for the National Limb Loss Resource Center through the Administration for Community Living (ACL).
There are 2.1 million amputees in the U.S. and 500 amputations each day. The Insurance Fairness Act for Amputees has already been passed in 21 states (CO is one of them). This is great news, but it only includes about half the population – those that are on state benefits like Medicaid and Medicare. Private insurance companies are exempt from state law so even in states where this has been passed, there are thousands of amputees still being denied for care through their own insurance. They are being flat out denied or insurance is putting on arbitrary caps like covering $2000 or one limb per life.
On Monday’s Hill Day training someone asked the room, “Raise your hand if you have ever been denied access to care.” Ninety percent of the room raised their hands. I was shocked. Being one of the only non-amputees in the room, I couldn’t relate to being denied a prosthesis, but it did make me think. Years ago I was in an accident and shattered my elbow. I was rushed to the hospital and immediately went into surgery where they ended up replacing my elbow joint. This procedure and new metal elbow was in fact covered by my insurance policy at the time, but if my accident had resulted in an amputation, I would likely have been without coverage for a prosthesis. The medical community is quick to support able-bodied individuals with the repair of anatomy (i.e. bone fractures, heart transplant, knee replacement, ACL tears, etc.), but this same coverage is not available for amputees in need of replaced or repaired limbs.
This may be shocking to some of you AND IT SHOULD BE. It’s infuriating! And the more that I heard – the more I realized it is blatant discrimination. There is even a word for it: Ableism (Able-ism), which is the discrimination in favor of able-bodied people.
Also, I learned that how you lose your limb affects the type of care that you get. In most of these cases, people that lose their limb in the military, as a veteran, or in a car accident can access the technology they need to live the life they want to live. This is because the Department of Defense, Veteran’s Administration, Worker’s Compensation, and No-Fault Automotive Insurance have set a higher standard of care for amputees within their insurance policies. If you were born with a congenital limb deficiency, fought cancer, or had a traumatic accident (non-related to workplace), most likely you will have significantly less coverage due to lower standards of care for amputees by private insurance, Medicare, and Medicaid.
Why should these changes be made?
First, amputees that receive proper care are healthier (no kidding, right?) because they can walk again! This does not only improve physical health, but also mental health. Getting proper care allows you to get back to work, be a productive member of society, enjoy your mobility, be pain free, potentially get off of unemployment and other government programs like Medicare. Second, getting proper technology (like microprocessor knees) reduces the risk of falls and ending up back in the hospital costing the health insurance company more money. There are studies proving that providing proper care actually saves money for all these reasons – for every $1 spent on rehabilitation, there is an $11 savings in disability benefits. So why aren’t we doing it?
Who we met with?
I met with the staff of representatives and senators from Missouri and Colorado including the staff of Senator Roy Blunt, Representative Blaine Luetkemeyer, and Senator Josh Hawley from Missouri and Senator Cory Gardner, Senator Michael Bennett, and my own Representative Joe Neguse from the 2nd district of Colorado. All of their staff members had the same reaction, that this bill should be passed (as it already has been in Missouri and Colorado). They were all supportive of our efforts, regardless of being Democratic or Republican.
My super heroes
During Hill Day, I was honored and fortunate to spend the day with Jeff Cain, Denise Hoffman, Trevor Bunch, and John Register. All four of them took me under their wing and through sharing their own stories, I learned so much about each of them and what drives them to fight for these rights. Jeff led the charge in training us all how to conduct an effective meeting with staff members in the House of Representatives and the Senate (something I would have no idea how to do otherwise).
Jeff Cain is a family physician who teaches and practices at the University of Colorado School of Medicine. He is also a double amputee below the knee. We talked about adaptive skiing, the snow in Colorado, his profession in the medical field and love of teaching, and his innovations in the adaptive ski industry that we still use today.
Denise Hoffman was my partner in crime all day! We crushed six meetings together and probably 10 miles of walking all while enjoying great conversation. I learned about her initial struggle to get her prosthesis covered and how she fought it by writing to her legislator. She is a nurse and above everything else she has always been an advocate for her patients. She is heavily involved with AOPA and the Amputee Coalition and travels with Freedom Innovations demonstrating technology and talking to patients. Her heart is as big as her smile and I’m so grateful I got to spend the day with her.
Trevor Bunch is a double above knee amputee and his insurance company told him that they would only cover one leg. This didn’t stop him from fighting for the technology he needed and with that he started his own fitness company and is a certified personal trainer. He is also an athlete and works closely with the Amputee Coalition as their social media guru. (Check them out @amputeecoalition)
I have followed John Register for years on social media, so it was so great to finally meet him and spend some quality time with him in person. His energy is infectious and if all goes to plan, he and I will be on the summit of Cotopaxi this September together! His story of being able to access everything he needed through the VA was an effective contrast to the other stories we heard.
Let’s not forget ROMP 2X Elite Climber and friend Dave Bernhardt who housed me, fed me, and even took me back in when my flight was unexpectedly cancelled. Also, ROMP Ambassadors Shawn Faessler and Nicole Ver Kuilen flew in for Hill Day! Nicole was at the summit of Cotopaxi with me last year and she is the founder of Forrest Stump – an advocacy group determined to raise the standard of care for amputees. She had to fight to get a running leg because insurance would not cover it – so she sought other options and after a 1500-mile triathlon, the Challenged Athletes Foundation (CAF) got her the running leg she needed through their grant program. I’m finding it more and more common that nonprofits are forced to step up and serve this population because our healthcare systems are failing. Shout out to all those amazing organizations helping this community (50 legs, Steps of Faith, CAF).
What will ROMP do?
ROMP has been fighting for fair access to prosthetic care for 14 years. We have done this through our mission of providing high quality care to those in need. We have not marched on Washington. We have put our heads down, dug our heels in and worked. Worked HARD. To create an efficient system of getting parts where they are needed around the world, in the hands of capable prosthetists to fabricate much-needed technology for those who do not have access.
Philanthropy should not have to step up to cover care for patients who fall through the inequities and inefficiencies in the current system. Ideally, everyone in the U.S. would have access to appropriate care and technology. In such case, the U.S. healthcare system would put ROMP’s current U.S. program out of business. If all amputees were covered – our work would be done! Mission: accomplished. But it’s not that simple. This is bigger than us. This is policy reform. This is taking a stand. This is sharing a voice.
How can you share your voice?
If you have ever been denied access to care – please go to the Amputee Coalition’s Amplify Yourself website and share your story with your insurance provider. Your voice matters and will make a difference.
The vision – what now?
Well, ideally we could get this bill passed at the federal level mandating all insurance companies and government programs to cover adequate technologies. What we are missing here is what Forrest Stump is asking for – access to MORE appropriate technology to live our best life (running legs, swimming feet, etc). What we are also missing is the population without insurance – this is ROMP’s niche.
I asked Denise, “In 20 years what is the ideal situation for the work that we are putting in now?” Her response was not what I expected, it was realistic. She said, “I think technology will continue to develop, and we are going to have to continue to fight to access the technologies…I don’t think it’s ever not going to be a fight.” Mic drop. Pick up mic. Keep fighting.
Overall, throughout the week I learned a lot about what Limb Loss Awareness Month is really about. My eyes were completely open to the lack of awareness about the issues, and where we have failed as a government and society to help those who have slipped through the cracks or are not seen as equal through our system. Like Nicole, I hope someday this is seen as a civil rights issue and we will understand the discrimination against those with disabilities and fight against it.