Roberta Wager
Despite feeling dizzy and under the weather, I sat down with President of the American Association of Kidney Patients (AAKP), Roberta Wager, or Bobbi. Her passion for the AAKP as a patient organization for the service of kidney patients was inspiring, to say the least. I asked Bobbi about the AAKP, what the organization stands for, and her opinion on some of the recent issues affecting kidney patients. I am pleased to say that, despite my sickness and nervousness, the interview went very smoothly, as it was clear to me that I was talking with an individual that was extremely passionate about her organization and caring towards patients suffering from the same disease that affected her.
That’s right — the President of the American Association of Kidney Patients is herself a Chronic Kidney Disease patient. In fact, it is the organization’s policy that at least 50% of its Board of Directors are kidney disease patients. The AAKP is indeed a unique organization, as I quickly found out in my interview with Bobbi.
Timothy Du: Hi Bobbi, thanks for taking time out to talk with me. I want to apologize beforehand if I sound a bit congested, I’m feeling a bit under the weather today.
Roberta Wager: It’s nice to meet you Timothy — don’t worry about that, I understand!
TD: Now, I don’t want to take up too much of your time, so let’s get started. First, for our readers to better understand your organization — what is the American Association of Kidney Patients, and what are some of its goals?
RW: Well, the American Association of Kidney Patients is a patient organization formed by 6 patients, about 40 years ago in the interest of educating and advocating for kidney patients’ rights — we were instrumental in a bill signed in 1973 by Nixon that provided Medicare funding for dialysis and kidney transplants. Since then, we have become a national organization, run by a Board of Directors. Our mission is to help patients and family members physically, socially, and emotionally and support them through their transition of the different stages and journey through chronic kidney diseases.
TD: I understand that many members of your Board are actually kidney patients, including yourself.
RW: Yes Timothy, in fact, it is mandated that 50% of our Board are kidney patients.
TD: So tell me about your journey to becoming President of the AAKP and how being President has changed your life as a kidney patient.
RW: Well, I worked in San Antonio as a nurse educator — I became a nurse after my first transplant. I realized that, in order to live a quality life, and live a long time, you must stay educated. As a nurse educator, I went around to different dialysis clinics, working with patients and other nurses [about dialysis]. I was asked by a Board member to serve on the Board, and I applied. My family and I had worked and volunteered locally with the National Kidney Foundation for years. The AAKP was the first time I had ever served nationally, and the first time I had served in a patient organization, not a professional organization. I loved it. I loved the mission — and I loved the patients.
I am now more aware about what is out there, in regards to national legislative public policy, and how those national issues affect us locally. Since I’ve started this journey as a 24 year old in 1982, struggling with Chronic Kidney Disease, I’ve wanted to affect patients — there was nobody to tell me back then about how long I would live while on dialysis. I am now able to represent and educate patients, and let the renal community know [how to] speak on behalf of kidney patients.
TD: As you mentioned earlier, the AAKP is a patient organization. What benefits does you have, being a patient organization, as opposed to a professional organization, as you said?
RW: The thing is — this organization is about the patients. We have reached out to over a million patients in these 40 years, educating them, letting them know — through education — that there is hope. Professional organizations, on the other hand, deal with these aspects for patients as well, but they are dedicated solely to the patients, not run by patients.
TD: You mentioned public policy earlier. I wanted to ask you, what do you think may be the next big step in public policy, as it relates to kidney patients?
RW: The next big step is likely the CMS (Centers for Medicare and Medicaid) holding a town hall meeting in regards to bundling, and how it will affect kidney patients on dialysis.
TD: Well, along the same vein, let’s jump into some more recent news. As you mentioned, the CMS has issued a proposed bundle affecting individuals who are on dialysis. How, specifically, does this proposal affect both access to care and quality of care for patients?
RW: We are hoping that it doesn’t affect their access — we made sure that one of our Board members were at that town hall meeting in regards to bundling. What they proposed was not to pay for home training, that is, dialysis therapy. What we’re afraid of is that it will affect the options of patients — and will that, then, not be enough incentive for providers to have it? This will affect patients’ access, limiting patients to incentive dialysis. The patient should have the right to choose.
TD: The arrests in New Jersey for alleged human kidney trafficking have rekindled a debate in bioethics regarding cash incentives for organ donors. What is your stance on this issue?
RW: What this issue has brought to the forefront, is that, unless they are involved with someone waiting for an organ, that there is indeed a shortage of organs and organ donors, and that there should be other incentives for donors to donate organs that are not illegal and do not fall under the [realm] of cash incentives.
You can find the AAKP’s website here; and donate or find information about contributing to the cause here.
Tim Du
Physician Network Writer
