38th Annual American Association of Kidney Patients (AAKP) Meeting
Public Policy Forum – Little Rock, Arkansas

Public Policy Forum

  1. Barry Straube, MD (Board of Director, NxStage Medical Inc; Immediate Past Chief Medical Officer, Centers of Medicare and Medicaid Services)
  2. Keith Norris, MD (Professor, David Geffen School of Medicine at UCLA)
  3. Teri Browne, PhD (Assistant Professor, College of Social Work at the University of South Carolina

Moderator: Christopher Blagg, MD (Professor Emeritus of Medicine, Division of Nephrology at University of Washington)
Blogger: Tejas Desai, MD (Assistant Professor of Medicine & Associate Program Director of Internal Medicine Residency Program, East Carolina University-Brody School of Medicine)

The public policy forum begins with a wonderful introduction by Carolyn G. Price, President of the AAKP. She welcomes all participants and audience members to the annual AAKP Meeting and this forum. AAKP is a patient-focused organization that produces programs that increase patient engagement in all aspects of kidney care, including the shaping of public policy.

Dr. Barry Straube starts the policy by focusing on healthcare disparities, particularly in kidney disease. Dr. Straube prefaces his talk by indicating that he was both a practicing transplant nephrologist and an administrator in the federal government (CMS). He begins with the seminal report by the Institute of Medicine (IOM) about healthcare disparities in the US (2003). He refers to this report as the “forgotten” IOM report because many have failed to execute its recommendations to narrow the gap in healthcare disparities. In the last decade a number of reports have surfaced to highlight the disparities and offer a variety of suggestions to resolve this problem, but the community have not implemented many of those recommendations.

IOM recommendations (in brief):
1. raising awareness – which by itself does not decrease healthcare disparities. Active interventions must be done
2. support the use of multidisciplinary treatment teams
3. correctly monitor data and data collection
4. encourage providers to participate in decreasing disparities, including increasing funding to achieve such a goal
5. increase minority representation in the healthcare workforce
6. educational activities to teach patients how to access care and navigate the healthcare system
7. providing CME-activity that focuses on reducing healthcare disparities

There are many types of disparities – the most obvious being racial, but a focus on all disparities would lead to the most fruitful resolution of this issue. Age, gender (elderly and children), geographic (healthcare in one state is different than in another state despite having the same medical condition), socioeconomic status, disease and conditions (kidney disease isn’t treated as well by providers as other conditions), religion, and sexual orientation (LGBT have unique healthcare needs) are all types of disparities that overlap with race.
Dr. Straube turns his attention to the 2010 reports from the United States Renal Data Systems database (USRDS). The USRDS data shows clearly how disparate health care is and has become since 1988. Death rates increase as degree of kidney disease progresses. However, when subdivided into race and age, younger aged non-white males have a significantly higher death rate than comparable while males. In fact, young non-white males with kidney disease have an equal death rate as much older white males with kidney disease (youth does not seem to be a protective factor in non-white males who have kidney disease).
Simply having chronic kidney disease makes death and hospital rates from other diseases (such as pneumonia, as Dr. Straube showed in a slide) increase. As a result, chronic kidney disease patients have overall disparate outcomes than those patients w/o kidney disease.
Dr. Straube concedes that healthcare in the US is filled with disparities, and that disparities occur between and within patient groups. These disparities have been known for decades, and many reports have provided suggestions. He now recommends that we have enough data to convince anyone that there are disparities. We know need active interventions to decrease the gaps in healthcare with accurate data collection to be sure that such interventions can be used on a national scale.

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Dr. Norris begins his presentation with a story about his family. He was unaware about the underlying medical illnesses from which they suffered. He suggests that a lack of communication helps widen the gap of health and wellness amongst different populations.
The first slide he shows is one where the rates of chronic kidney disease appear to be relatively the same across racial groups. However, if one is an ethnic minority, they are significantly more likely to be on dialysis than a comparable Caucasian patient.
There are three main barriers to narrowing the gap in healthcare. 1) systems-level barriers, which include insurance coverage, 2) provider-level barriers, which includes an unawareness that patients of a specific population/demographic have different healthcare needs and 3) patient-level barriers, which include pre-conceived notions about health and healthcare.
Data from Johns Hopkins University show that the rates of cardiovascular procedures (i.e., angiograms, stress tests, echocardiograms) was higher for white patients than any other ethnic/racial group prior to starting dialysis. Once dialysis begins, however, the rates change – more ethnic minorities receive cardiovascular procedures than their white counterparts. Dr. Norris suggests that perhaps certain racial/ethnic groups are more likely to receive aggressive medical care (not necessarily appropriate or disease-modifying care) pre-dialysis than others – a clear indication of disparate healthcare.
Dr. Norris espouses the need for improved provider-patient communication to decrease disparate healthcare. He focuses on literacy, and how in the US, literacy rates are approximately 99%. This means that 99% of the US population can read up to a grade 3-4 level. Functional literacy, however, is quite different. Shockingly, 48% of US adults cannot complete a job application or read a bus schedule. This is important for those physicians who rely on healthcare brochures to convey medical information. About 66% of foreign-born Americans cannot understand the instructions listed on a prescription bottle. Literacy is a key component of communication, which directly impacts on healthcare disparity.
Dr. Norris concludes with a poignant poem that touches on many disparities that he and Dr. Straube had discussed. (Note: Dr. Norris did not mention the author of the poem).

Six humans trapped by happenstance
In the black and bitter cold
Each one possessed a stick of wood
Or so the story is told

Their dying fire in need of logs
The first woman held hers back
For on the faces around the fire
She noticed one was black

The next man looking across the way
Saw not one of his church
And couldn’t bring himself to give the fire
His precious stick of birch

The third one sat in tattered clothes
And gave his coat a hitch
Why should his log be put to use
To warm the idle rich

The rich man just sat back and though of the wealth he had in store
And how to keep what he had earned from the lazy shiftless poor

And the black man’s face bespoke revenge
As the fire passed from his sight
For all he saw in his stick of would
Was a chance to spite the white

The last one of this group
Did naught accept for gain
Giving only to those who gave
Was how he played the game

The logs held tight
In death’s still hand
Was proof of human sin
They didn’t die from the cold without
They died from the cold within

Having compassion for all individuals can help us overcome the healthcare disparities we see amongst the diverse group of Americans we have in our country.

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Dr. Browne begins her presentation by providing the agenda: disparities in the treatment of transplant patients. Age: younger kidney patients receive kidney transplants more than older counterparts. Most transplants go to those 18-34 years of age, with the least going to those 65 years or greater. Gender: women receive less kidney transplants than males at all age groups. Ethnicity: white patients receive more kidney transplants than any minority group.
Receiving a kidney transplant is not easy. There is a 5-step pathway to ultimately receiving a transplant.
Step 1: patient expresses interest.
Step 2: the patient makes contact with a transplant center.
Step 3: going to the center for tests and workup.
Step 4: being found to be suitable to receive a transplant.
Step 5: receiving a living transplant or being listed for a deceased donor transplant.
African-American (AA) patients are unable to successfully navigate this pathway as well as other ethnic groups. This is likely because of a lack of understanding and poor communication with these patients. What are the reasons for minorities not receiving a transplant?
One – genetic. In previous decades, this was a significant barrier. With modern-day immunosuppressive agents, donors of one race can be matched with recipients of a different race
Two – AA patients may not be as interested in a transplant as other ethnic groups. This may be related to medical mistrust given previous historical events.
Three – information about kidney transplants is lacking in the AA community. AA patients are less likely to know someone who has donated or received a kidney transplant.
Dr. Browne’s research shows that 94% of AA ESRD patients (in a single center studied) are interested in receiving a kidney transplant but only 9% were actively waiting on the transplant list. Other investigations have shown a similar gap. USRDS data show that even when patients are given information about kidney transplants, they are still not listed. Thus, information is not the only solution for helping patients navigate through the transplant pathway.
In 2008, Medicare changed the conditions for coverage (the laws that must be adhered to if providers wish to be paid) so that it is mandatory that every dialysis unit help patients navigate the transplant pathway. Dr. Browne recommends that patients increase their engagement in the process and staying “on top” of the provider when navigating the pathway.

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