"I guess I am driven," Eileen Casey says. It's an ironically humble statement to come from the woman who spearheaded the effort to pass Vermont's prosthetics parity law—the tenth in the nation—after having a right transtibial amputation immediately following an osteosarcoma diagnosis and finding out that shed unknowingly used up her insurance policy's lifetime prosthetics coverage on her first temporary prosthesis. Casey was named the 2008 Advocate of the Year by the Amputee Coalition of America (ACA) for her efforts.
In October 2006, Casey, a single mother of three college students, was in the middle of downsizing her newly vacated "empty nest" when she was diagnosed with osteosarcoma. To stop the rapid spread of the cancer, her physicians recommended a right transtibial amputation within the week. Casey, who sells advertising at a television station, was stunned. She asked for at least one additional week to get her affairs in order, inform her clients and employer, and complete her move. Her physician complied. "Through all that, I found myself cut down and completely, devastatingly helpless with this diagnosis. I did not know what to do and was in complete shock for a long time after surgery." The following month, she began 42 consecutive weeks of chemotherapy.
Adding Insult to Injury
The next round of insults came in June 2007, when she was being fitted for a permanent prosthesis. She considered her choice of clinicians to be of the utmost importance, and after many interviews, she chose Deborah Wilde, MS, CPO, of Bio-Medic Appliances, Essex Junction, Vermont. Casey dreamed of once again being the "little aerobics lady," having a daily running routine, and being a "passionate downhill and cross-country skier." Wilde broke the news that her insurance policy's $10,000 lifetime limit had been depleted by her temporary prosthesis, and that Casey was going to have to personally fund her permanent leg. "I can't even put into words how shocking and devastating [it was] that I had health insurance, yet I had no coverage for a prosthesis," Casey says. Upon Wilde's suggestion, Casey sought financial assistance from Vermont Vocational Rehabilitation (VVR). She also applied for a loan with her local bank and remembers her desperation when she was forced to explain to the bank that she was "trying to buy myself a leg." Fortunately, Casey didn't have to take out the loan; before she had finished with the loan process, the VVR confirmed that it could and would provide the finances to purchase a prosthesis for her. "I did the one-legged Irish jig at my desk when the VVR called back.... I was crying and everybody in the office was crying."
Taking Action
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| Eileen Casey is walking forward in all areas of her life. Photographs courtesy of Eileen Casey. |
"As grateful as I was," Casey continues, "it showed me the need that was out there. To think that there are other people in my situation—especially children who go through prostheses much more frequently than adults do—[I knew] something needed to be done, needed to be changed. In October [2007], I went to see... Senator Doug Racine (D-VT), who was the chair of the Health and Human Services Committee in the [Vermont] legislature. Thanks to the ACA website, I had a lot of information. I explained my story, explained how wrong it was, and asked him to sponsor Vermont's parity bill." The bill would require all insurance companies to meaningfully cover the cost of prostheses. Senator Racine introduced the measure on New Years Day 2008.
"One of my side goals in doing this was [to] hopefully meet other amputees," Casey says, who adds that her ordeal has been a lonely one, largely because osteosarcoma most commonly presents in children. She says, "I pretty much did it all by myself—because of the HIPAA [privacy rule], no one could share [the identity of other patients] with me. I went around to other [prosthetics offices] with flyers saying, 'If you are having trouble with insurance coverage for your prosthetics, please contact me.' But I never heard from anybody." Casey eventually met a man who had lost his limb in a motorcycle accident; he would later assist in testifying for the bill.
Casey testified that she wanted to continue being a tax-paying citizen, working, and being independent. "Without this [law] I don't know what I would do; I didn't want to be a burden to the state. Why should the Vermont taxpayers have to buy me legs when it is the insurance company's responsibility?" She continues, "Here I am, even though I am paying healthcare premiums every paycheck and my employer is paying them on my behalf, I have no coverage for prosthetics. If I had stopped working and gone on Medicare or Medicaid, I would have 80 percent paid. It does not make any sense at all." However, Casey said it wasn't her verbal testimony that she feels made the difference. "The most powerful element is for people to see a prosthesis. I didn't even know what the word meant until I became an amputee. I had never seen one before. I brought one with me when I testified. [The senators] were very interested; they passed it around and asked me questions." Casey wore her prosthesis to testify while her cohort on crutches did not; the juxtaposition between the two caused the senators to recognize how prosthetic devices can help return normalcy to an amputee's life.
The bill sailed through Vermont's Health and Human Services Committee, passed unanimously in the Senate and the House, and was signed into law on April 23, 2008.
Bittersweet Victory
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| Eileen Casey enjoys a moment with her dog. |
"Ironically enough," Casey laughed, "even though Vermont became the tenth state to pass a prosthetics parity bill, it doesn't affect me personally since my company is self-insured. I still have no coverage!" Currently, Casey needs her socket replaced. She says it takes 11 socks—a "bazillion amount of padding"—to make it through her day. Feeling like a "little beggar girl," she says, she returned to VVR requesting $6,000 for a new socket. They were able to help her a second time. "But if something happens, I can't go back to them a third time!" Casey emphasizes.
When asked how she was able to become such a strong advocate for prosthetic parity during such a stressful time in her life, she laughs and says that anybody can influence change. "You have to muster up all the courage that you can," she says. "I did this when I was going through all this chemo. I was a mess." When Casey wasn't at the hospital, she was working because she had no other means of support. "Every day, I would try to do a little bit," even just sending an e-mail. "Believe me, I don't have a lot of free time. I struggled to make it through the work day, and at times I did not even make it through that."
Through the trials and triumphs of the last two years, Casey has exhibited a determination to continue walking forward in all areas of her life. She just celebrated her one-year anniversary of being declared cancer-free and ending chemotherapy. Even though she still wakes up in the middle of the night and tries to walk to the bathroom, forgetting her prosthesis, she has accepted her amputation. She has not, however, accepted any excuses to quit her forward momentum. "I have spent the past year trying to strengthen myself and get the chemo out of my system," she says. Casey is now testing the limits of what she can and cannot do with her prosthesis. She can't go on her daily runs and has not yet tried cross-country skiing. To her dismay, when she returned to swimming, she realized she could not go anywhere without "my little fin." She skied fifteen times last season with Vermont Adaptive Ski and Sports (VASS). "I was 'yeehaw' and 'woohoo' all the way down the mountain," Casey says. She has even expanded her horizons to include classes in Zumba, a fitness class based on Latin dance.
Casey is currently taking her story to the federal level, where she hopes to make a difference nationally. "I hope I have inspired people to make changes for themselves," she says. It seems clear that the ACAs Advocate of the Year is just getting started.
Chelan M. Keeter, BSE, CNA, is an engineer with the New York Department of Transportation. She is pursuing a nursing degree.
