Proudly joining 130 other amputees for the Amputee Coalition’s Hill Day on April 9, 2019 to celebrate April as Limb Loss Awareness month, I was also invited to take the Amputee Coalition’s Lead Advocate Training in Washington, DC. On April 7. Hill Day is when amputees from all over the country visit their state’s legislators to lobby for issues relevant to amputees. This year we had two ‘asks’. First, we were lobbying for Insurance Fairness for Amputees. Only 21 states have such laws, Massachusetts is one of them I am happy to say, through strong efforts by Prosthetists, disability rights advocates and amputees who all testified before the state to see this bill put into law in 2003. One of those who did a lot to promote this law was Keith Cornell, President of Cornell Orthotics and Prosthetics in Beverly. The essence of the bill that passed our legislature says that insurance companies must cover prosthetics and can’t put caps on prosthetic coverage. Insurance companies generally follow Medicare’s coverage, which is 80% coverage and a 20% co-pay. With secondary insurance, the amputee often has a very small amount they will have to pay. With the Affordable Care Act pre- existing conditions cannot prevent us from getting the necessary arms and legs to allow us the mobility to live a quality of life.
Some states, like New York, have a one limb per limb per lifetime law. That means for a double amputee, they can only get one prosthesis per limb for their entire life, no matter how beat up their leg is or how much their residual limb may have changed. Some states have a $1000 cap on what they will pay, some $2500 or $5000 maximum. Naturally this is an enormous burden for any amputee to have to bear and often means that they can’t even afford a basic leg or replacement parts. Independent studies have shown that by ensuring appropriate prosthetic coverage, premium increases would be minimal, between 12 and 14 cents per member per month and the savings are substantial. Colorado commissioned a study of their Medicaid program and found that, by providing prosthetic care, the state had average savings of nearly $450,000!
I am very encouraged by the response from our Senators and Congressmen to see that this coverage is mandated nationally. Appropriations for 2019 have been allocated but we are optimistic that 2020 will see this law enacted. It’s so very important that these legislators hear from amputees themselves about this need for a federal mandate. We are the ones who have to pay the price for our prosthetics and we should have equal access to the best possible care for our needs and goals.
The second ‘ask’ was for continued funding for the National Limb Loss Resource Center, a large part of the Amputee Coalition’s goal to provide the necessary information and resources to amputees, especially when they are new and are having difficulty navigating life as a person living with limb loss. There are over 2 million amputees in the US with another 25 million at risk for amputation. That number is expected to nearly double by 2050 due to incidents of diabetes and vascular disease, the leading cause of amputation. There are 500 amputations a day performed in the US alone. These figures do not include people born with limb difference.
The need for access to the best information possible is essential, so the need to fund this valuable resource is key to our being able to live a normal life and to have access to this valuable resource is so important and without funding the National Limb Loss Resource Center would not exist. Under the Center, they have a nationally recognized Peer Support Program and have trained over 1,000 Certified Peer Visitors. They have award winning publications to support living with limb loss/difference and community re-engagement. They have a youth camp and provide programming supporting youth life transition and leadership. They have national and regional educational events as well as providing resources for emotional and well-being and health recovery. They provide individual and self- advocacy education. As you can see, they are indeed a valuable resource and funding must be continued. Last year they were funded at $3.5 million in FY2019, despite efforts by Congress to reject the proposal to fund it. This year the Amputee Coalition is asking Congress to fund the Limb Loss line at $4 million in FY2020 to elevate the impact that the NLLRC can have.
I am proud to have been joined by over 130 people with limb loss/limb difference for Hill Day and I wanted share my experience and some data to let you know what’s happening nationally. You should always be an advocate for yourself and others. If you want to become a Certified Peer Visitor or want to get more involved, just contact the Amputee Coalition. Their website is Amputee-Coalition.org or you can contact them by calling 888-267-5669. Meanwhile, COPAA is always looking out for your best interests and representing you locally and nationally.
Posie Mansfield, President