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Organ donor fight calls for front-row action

ANALYSIS

It appears that as has occurred in far too many instances on far too many issues in recent times, a fight has broken out in Memphis.

In one corner is Methodist Le Bonheur Healthcare, and in the other is the Mid-South Transplant Foundation. Although not at the root of the debate, it appears the large African-American population in Memphis and the Mid-South is certainly a big part of it.

Each party has been on a mission to ensure that its side is heard and accepted as the way forward. I have listened, studied, researched and learned more about this topic than I ever thought I would.

A few basic definitions are necessary to understand the matter better:

Donor – A person who makes a decision to donate his or her organs upon their death (a living family member or close friend can also make a decision to donate a kidney to a relative or friend in need at any time.)

Organ – Heart, lung, kidney and liver, with our focus primarily on kidneys and livers.

Primary access – Priority access to available organs.

Secondary access – Access after the sickest person in a local area or the region is served.

Several truths exist in the State of Tennessee:

The majority of the states African-American population lives in West Tennessee and more specifically in Memphis.

As is the case in the U.S. in general, African Americans in Greater Memphis face substantial health disparities that can be exacerbated or improved by policy decisions with the proper understanding and intention.

At the heart of the debate is pending implementation (end of 2012) of a 2008 decision by the United Network for Organ Sharing (UNOS) to eliminate a 19-year "organ sharing agreement" more formally known as an Alternative Allocation System (AAS) in Tennessee. Tennessee, Florida and Ohio all had been operating under similar long-term exceptions to current policy.

UNOS is a private non-profit contracted with the Department of Health and Human Services. A review of UNOS's website reveals some of their key functions:

Managing the national transplant waiting list, matching donors to recipients 24 hours a day, 365 days a year.

Maintaining the database that contains all organ transplant data for every transplant event that occurs in the U.S.

Bringing together members to develop policies that make the best use of the limited supply of organs and giving all patients a fair chance at receiving the organ they need, regardless of age, sex, ethnicity, religion, lifestyle or financial/social status.

Monitoring every organ match to ensure organ allocation policies are followed.

UNOS determined in 2008 that the AAS in Tennessee (Florida and Ohio as well) created unfair advantages and potential disadvantages to some programs providing organ procurement services (collection and distribution) when the goal is always the highest level of fairness to the sickest patient on the list. Complex and frequently reviewed rules govern how available donated organs are distributed on a state, regional and nationwide basis.

The decision has caused much dispute on its impact and the steps that should be taken because of it. Methodist, in partnership with University of Tennessee, has one of the area's largest liver and kidney transplant programs. Le Bonheur operates the only pediatric liver program in Tennessee, Mississippi and Arkansas.

The Methodist position

I recently had a conversation with Dr. James Eason, transplant surgeon with Methodist and passionate advocate for greater access to more organ donors for Memphis and the Mid-South. He shared a framework and direction to more resources to understand Methodist's position on the issue.

Methodist's position is that the recent UNOS policy change resulted in Methodist losing primary access to the 5.5 million potential donors that live east of Jackson, Tenn., except Carroll County, including the remainder of Tennessee, parts of Kentucky and parts of North Carolina and Virginia. The defined area that it will have primary access in has two million people or potential donors, including all of Tennessee west of Jackson, parts of North Mississippi and parts of Eastern Arkansas. Each of these areas is served by a local Organ Procurement Organization (OPO) charged with procuring organs from donors and ensuring they are legally and ethically provided to the sickest individuals on the list of those seeking organ transplants.

Under the AAS, both areas of Tennessee and both OPOs combined to form one "local" area. After the termination of the agreement, these areas are now autonomous local areas that are a part of a five state region (Tennessee, Virginia, North Carolina, South Carolina, and Kentucky). The Mid-South Transplant Foundation (MSTF) is the OPO serving the area west of Jackson. Tennessee Donor Services (based in Nashville) serves the area east of Jackson.

Methodist asserts that its primary access will be limited to one of the smallest OPO's (Mid-South) in the nation, reducing Methodist's liver access by up to 75 percent, and drastically reducing the number of patients it is able to transplant each year. This, Methodist argues, will limit patient access to organs, causing deaths while on waiting list for organs from other areas.

Methodist has filed a waiver to petition the Centers for Medicare and Medicaid Services (under the Department of Health and Human Services) to allow them to partner directly with Tennessee Donor Services as their primary OPO, increasing their access to a larger donor pool. It appears that Mid-South had approximately 62 donors (200 organs procured) while Tennessee Donor Services had approximately 200 donors.

To avoid the consequences of this decision, Methodist presents two options. The primary proposed option from Methodist is for MSTF to merge with Tennessee Donor Services (TDS), with TDS being the surviving entity. This would create one sole OPO and one local area for Tennessee, giving Methodist primary access to all of the organs, particularly livers on a primary basis.

The second best solution, according to Methodist, was the waiver that was submitted. Methodist has requested that people in the community write letters to CMS in support of the waiver.

The MSTF view

Seeking fairness and a thorough understanding of the issue, I did further research and spoke with a team from Mid-South Transplant Foundation (MSTF).

MSTF argues that the elimination of the Alternative Allocation System (AAS) actually is a good for those patients most in need of an organ because it gives them equal access to available organs. According to MSTF, the AAS allowed organs to become available faster for the transplant centers in the state before they were allocated to the larger five-state region, making it easier for patients that could simply afford to pay to receive an organ faster.

From the MSTF view, the elimination of the AAS levels the playing field for organ recipients and gives them equal access to organs no matter how much money they have or where they live.

MTSF states that Methodist will still have access to enough livers to treat local patients. Methodist may not, however, have primary access to the organs they need to support patients from out-of-state that are primarily private pay or private insurance patients.

So in one corner Methodist claims that the issue is about greater access; and in the other corner MTSF says it is about fairer access based on need, not ability to pay.

Digging deeper

In seeking further clarification, I discovered some interesting facts. UNOS Assistant General Counsel, Jason P. Livingston, stated that its Liver Committee recommended, its Policy Committee agreed and its "Board of Directors voted in its November 2008 meeting to discontinue the Tennessee Statewide liver alternative allocation." They also subsequently declined appeals to that decision, however implementation was delayed by a major computer system re-write. The new program is expected to be effective in fall of 2012, allowing for implementation of the new rules in late 2012.

So ultimately the decision impacts only how livers are allocated not kidneys or other organs.

Further investigation on minorityhealth.hhs.gov, organdonor.gov and several other sources revealed the following in summary:

As of May 4, 2012, Methodist had a waitlist for kidneys of 505, with only 77 patients awaiting livers.

MTSF has the highest percentage of African-American donors of all OPOs in the country in the 9th largest African-American market in the nation.

In 2011, MSTF had 43 percent African-American donor while its Nashville counterpart, TDS, had 11 percent. This is obviously reflective of the demographics in both areas, but still significant.

Even more revealing are the following stats:

From 2008 to 2011, no less than 65 percent of Methodist Transplant Institute's kidney transplants were to African-American patients

During the same period, no more than 18 percent of the liver transplants performed annually were to African-American patients while approximately 77 percent were to white patients

I will also add that a ride around our community reveals a proliferation of dialysis clinics, the impact of rampant diabetes and the high need for kidney transplants, particularly for African Americans.

Time to get engaged

All of the conversations, research and data bring me to the conclusion that although the change in primary availability of livers statewide is an issue, it is not one with high impact to the African-American community directly.

This does not mean the community should not weigh in on the issue. In fact, I employ our readers to take this opportunity to learn, enhance our voice on this and other health issues and become donors. (www. ­donatelifetn.org)

The fact that we are affected in any way must translate into us being affected and inspired to action and pro-action that provides greater access to organs, blood, plasma and other life saving donated life resources.

We must become more than back-row spectators in these fights. We must choose to be active participants to ensure we understand the ramifications of decisions being made. And we must actively engage to reduce health disparities through policy change, healthy habits that promote wellness, and better access to enhanced quality healthcare.

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