ARE PATIENTS ON SHORT END OF MANAGING OWN DESTINY?

There are times when chronic kidney disease patients feel like they are on the short end of managing their own destiny. There are a couple instances that have arisen recently that tend to substantiate that feeling.

One is a report on kidneybuzz.com provided by Public Broadcasting Service (PBS) that suggests that transplant hospitals are throwing out kidneys and denying patients to meet federal standards. Another is legislation proposed in the U.S. Congress – known as the Dialysis Patients Demonstration Act – that the American Association of Kidney Patients (AAKP) believes restricts patient choice.

The AAKP, along with most of the kidney community, has consistently supported integrated care as an important goal for quality patient care. However, AAKP contends this new legislation (H.R. 4143/S. 2065) fails to achieve that goal because it severely restricts patients’ freedom of choice – it infringes upon the patient/doctor relationship, and it creates profound disincentives for transplantation, threatening access to high quality care provided by non-profit and small dialysis providers. Also, according to AAKP, it excludes patients if they are transplanted.

The bill, and the strong-arm tactics large dialysis lobbyists and their PACs (political action committees) are using to attempt a forced Congressional passage, without accepting reasonable patient-friendly modifications, has created tremendous controversy throughout the kidney community.

Those who oppose the legislation point out how the bill restricts choice for patients:

** It automatically, without patient consent, assigns kidney patients to a “demonstration program” that favors only the largest, status quo dialysis providers.
** This means patients have no choice to “opt-in” to the demonstration program. If patients do not like the quality of care they receive, or if patients feel they are not being told enough about better care options like kidney transplantation or home dialysis, they bear the burden of deciding how to “opt-out” of the “demonstration program.”
** And, if patients do decide to “opt-out,” they only have 75 days to figure out how to do so! Clearly, the lobbyists who wrote the bill are not patients and have never experienced their lives being turned upside down by realities of kidney failure and dialysis!
** The integrated “demonstration program” creates financial disincentives for transplants, and then excludes patients if they are transplanted.

AAKP believes the bill is backwards. Patients deserve the full freedom to knowingly “opt-in” to a program that puts their health and life at risk. If dialysis providers run a “demonstration program” that fails to address patient concerns, patients should have the full freedom to “opt-out” at any time. This keeps accountability in the system and means big dialysis corporations must treat patients, at the minimum, like any other customer-oriented business in America.

As for the item relating to transplant hospitals throwing out kidneys that in some instances could be used by willing patients, the contention is summarized in the following article:

Transplant Hospitals Throwing Out Kidneys

& Denying Patients To Meet Federal Standards

At last count, there were 244 kidney transplant centers in the United States, according to the non-profit organization, National Kidney Center. Those collective centers hold over 100,000 chronic kidney disease patients on their kidney transplant waiting lists – all of whom are in desperate need of a lifesaving kidney transplant.

Well, Public Broadcasting Service (PBS) broke the shocking news that the number of organs being tossed out or discarded has drastically increased. Reporter  Casey Ross (PBS) suggested the startling revelation that kidney transplant hospitals across the United States are “throwing away less-than-perfect” kidneys and denying the sickest chronic kidney disease patients lifesaving transplants. Apparently, a key reason for the decision to discard kidneys at a record rate is out of fear of a federal crackdown and possibly losing Medicare funding.

“Last year, 3,159 donated kidneys were discarded, up 20 percent from 2007, according to federal data,” reported Ross. This comes with news that the wait time for a chronic kidney disease and dialysis patient to receive a kidney transplant from the waiting list is also increasing. Ultimately, many kidney transplant centers are rejecting relatively large amounts of kidneys because they are concerned that poor surgical outcomes will result in a federal penalty.

Put simply, surgeries involving imperfect kidneys and/or sicker patients are more risky, so hospitals that do many of them run the risk of poor outcomes that may hurt their national performance. That is why hospitals try to avoid the risk by discarding less-than-perfect kidneys. The chief executive of the Gift of Life Donor Program, Howard Nathan, said: “To me, it just doesn’t make any sense. We have hundreds of thousands of people on dialysis, and you have these kidneys available that would work … but transplant centers are afraid to use them because they might pull their results down.”

Nathan further noted: “Many patients would gladly accept organs that are discarded because of real or perceived imperfections.”

Yet, decisions to reject those organs by transplant centers do not give them that opportunity. In general, centers are seeking organs free of disease and certain biomarkers that could impair function or cause complications after surgery. However, studies have repeatedly raised questions about whether organs are being tossed out unnecessarily.

According to the KidneyBuzz.com article, there also are other implications. And the online site asks diagnosed CKD and dialysis patients the following question: Have you ever felt as though your kidney transplant center is looking for every excuse to take you off the kidney transplant waiting list, or refuse to offer you a kidney transplant?

Well, you are not alone. In the past five years that organ transplant hospitals have been trying to avoid federal crackdowns as a result of changes in standards, more than 4,300 transplant candidates were removed from waiting lists across the country. PBS mentioned: “That is up 86 percent from the 2,311 patients delisted in the five years prior to the regulation.”

Although, Centers for Medicare & Medicaid Services (CMS) have begun circulating a memo highlighting concerns about organs going unused – citing the 20 percent increase in discarded kidneys – it is not enough.

KidneyBuzz.com is encouraging diagnosed CKD and dialysis patients to request that CMS take immediate action to help prevent kidney transplant centers from discarding transplantable kidneys, as well as limit CKD patients being removed from the kidney transplant waiting list.

Patient advocate statements can be forwarded to U.S. Centers for Medicare & Medicaid Services, 7500 Security Boulevard, Baltimore, MD 21244. CMS.com is a federal government website managed and paid for by the U.S. Centers for Medicare & Medicaid Services.