Looking Back to the Future
August 2004 Issue
As I look back over my incredibly enjoyable and interesting life, I realize I probably would not have done half the things that I did if I had not lost my leg at age six! Also, I would not have been able to do those things without having access to the best and most appropriate care--from surgery to rehabilitation and training to--yes, prostheses. Will children in the future be so lucky? Not unless we can change the laws that govern the reimbursement of prosthetic limbs.
The day I was asked if I would like to write this article, I received an unexpected and wonderful e-mail from a young man in Spain with whom I had worked at Memorial Sloan-Kettering Cancer Center many years ago, when he had his leg amputated. He had found me after all these years when surfing the web and was writing to tell me that he was working for a prosthetic manufacturer, and to thank me "&for being the person who made our lives easier while we stayed in New York, and of course, for being the one who opened our eyes&."
You cannot imagine how happy I was to receive that e-mail, and I started thinking about all the kids I have known, worked with, and loved over the years. Many of them are doing extraordinary things: one is preparing to be the first female to compete in the Hawaiian Ironman; others have represented the US in the summer and winter Paralympic Games. Still others are running marathons, climbing mountains, rollerblading, playing ice hockey, getting professional degrees, getting married, becoming parents, going to work, and today are fully functional, taxpaying citizens.
Needed: Guaranteed Prosthetic Coverage
All of them have depended on comfortable, functional, and appropriate prostheses. Often we had to fight to get them; occasionally, in extreme circumstances, ASPIRE helped with funding when reimbursement was less than optimal, but they did get their prostheses--eventually. [Editor's note: Paddy Rossbach is co-founder and president of ASPIRE Inc., a nonprofit organization which encourages young amputees to be active through sports.] What is going to happen to kids like these in the future? Will the baby I saw a few months ago who has to have both feet amputated for bilateral fibular hemimelia be able to access prostheses for his lifetime? Not the way things are going at the moment. The time to address this issue is now. It is not going to go away on its own.
It is not, however, just a matter of enforcing reimbursement for prostheses and rehabilitation--for one is no good without the other. It is a matter of looking at the much broader picture from a public health point of view. If we do not have access to appropriate care, we are all at risk for the secondary conditions that result from a sedentary lifestyle: obesity, diabetes, cardiovascular disease, loss of bone density and muscle mass, depression, pain, and even some forms of cancer. Obesity is already reaching epidemic proportions in this country; children are being diagnosed with type 2 diabetes, and inevitably, many of them will lose limbs at an early age. If, on top of this, they do not have access to appropriate care, the outcome financially, and in human suffering, will be enormous.
ACA Takes the Lead
So, as I look backward over my own and other's lives and achievements with great pleasure, I also look forward with a great deal of concern for what lies ahead. Is this the sort of life we want future generations to live? I don't think so, and neither does the Amputee Coalition of America (ACA). That is why the ACA is taking the lead, in partnership with other national health groups representing people with limb loss, to develop a coalition that will battle to provide all amputees guaranteed prosthetic coverage!
Help us to help every amputee. Get involved. With your support, the Access to Care Campaign will ensure proper care for current and future amputees. I urge every individual, family, group, company, and organization to join us in this historic initiative. To find out how you can help, contact the ACA at 888.AMP.KNOW.
President & CEO, Amputee Coalition of America