Archived Story

Advocacy: In rare form

Published 9:23am Friday, March 29, 2013

by Deanna Nicole Hunt

American Kidney Fund is a wonderful organization. Not only did they select me to go to Washington, D.C., to spread awareness, and to connect with others who are just like me, but they also provide financial support for my medical insurance. I do not know where I would be without their assistance. This organization provides direct financial assistance to those dialysis patients that are in need, they provide health education so that individuals who are new to kidney disease will learn what is acceptable, and what is not, and they also provide prevention events to assist the community with testing to find out whether or not they have kidney disease.

“American Kidney Fund also leads the nation in providing charitable assistance to dialysis patients who need help with the costs associated with treating kidney failure.”

There were 10 of us that attended the Kidney Action Day on Capitol Hill. We started out as strangers, and left the event as friends, family and allies. I love each and every one of the advocates that participated in the event. We came from all walks of life. Four were from Texas, there was one young woman from Indianapolis, Ind., another one from Connecticut, one gentleman from Waldorf, Md., another gentleman from Raleigh, North Carolina, a mother who will stop at no expense to help her son, she was from Washington, D.C., and of course, the author of this article from good old Newsoms, Virginia.

We learned that each of us has a voice, and that voice is important, and strong. We also learned that if we do not step out in faith, if we do not make sure that others hear our voices, then how can anything be done. We have to be the answer, and we have to make sure that the government knows that we exist. We are the faces of kidney disease, and of kidney transplantation. We are the ones who have to endure the dialysis treatments, and we of course, are the ones who have to step outside of ourselves and make sure that the community knows that it is necessary to go and get tested. Prevention is the key! Educating the communities that we are tied to, making sure that they know that high blood pressure and diabetes are two of the most underlying causes of kidney disease and kidney failure. There are other causes such as stress, obesity and Lupus, but there are a lot of individuals who are diagnosed with kidney disease and/or failure because of high blood pressure and/or diabetes.

One of the topics that we had to focus on was the Immunosuppressive Drug Legislation (H.R. 132.5). Currently, an individual who is under the age of 65 can only receive Immunosuppressive medications for 36 months. After that time frame the individual has to go out and find other suitable ways to obtain the medications, or they will go right back to dialysis. We advised the representatives that it is imperative to extend the length of time that an individual can receive these benefits to a lifetime, instead of 36 months, because it was far cheaper to pay for the medications that people need versus to pay for those individuals to be on dialysis. To be on dialysis requires $86,000 a year or more, but to supply an individual with the lifesaving medication that he or she needs is only $12,000 a year. So – do the math – which is more efficient? Which price would you rather the legislative branch select?

We also talked to representatives about the importance of not making any more cuts to Medicare. In regards to the sequestration, Medicare has already received a two percent cut. That two percent cut means a lot to individuals who rely heavily on Medicare, and on the American Kidney Fund as well, because they assist with some of the financial road blocks those individuals who are not at the retiree age have to endure. We also encouraged the same representatives to join the Kidney Caucus, which is fairly new. The Kidney Caucus was formed in 2002, and they are supposed to educate members of congress, as well as Americans about chronic kidney disease, and what the role of the government should be in regards to assisting these individuals.

Deanna Nicole Hunt is a 32-year-old dialysis patient living in Newsoms. She has been waiting for a new kidney since March 2009. She is a graduate of Southampton High School who studied criminal justice at Chowan University.

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