INFO:Campaign for Transplant Patient Fairness Weighs in on UNOS Plan, Calls on HHS to Protect Patient Interests

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Campaign for Transplant Patient Fairness Weighs in on UNOS Plan

U.S. Newswire

13 Mar 16:10

Campaign for Transplant Patient Fairness Weighs in on UNOS Plan,

Calls on HHS to Protect Patient Interests

National Desk, Health Reporter

Contact: Anitra Budd of the Campaign for Transplant Patient

Fairness, 202-484-2776

DALLAS, March 13 /U.S. Newswire/ -- When a new federal

regulation goes into effect on Thursday, the United Network for

Organ Sharing (UNOS) will provide the U.S. Department of Health and

Human Services (HHS) its current liver allocation policy without

any changes, and without any recommendations that the current

policy of regional sharing for status 1 liver patients become

mandatory.

It will also submit a plan to develop changes, which may not be

ready to be implemented until the end of this year. As a result of

today's decision by the UNOS board, it is incumbent upon the

Secretary of Health to protect the interests of patients awaiting

liver transplants, said the Campaign for Transplant Patient

Fairness, an alliance of the nation's leading patient advocacy

groups, transplant hospitals and organ procurement organizations.

The UNOS board met today in special session to deliberate on a

plan to develop liver allocation policy rather than on any policy

itself. It intends to submit the plan, along with the current liver

allocation policy, to HHS as a requirement of a regulation that

goes into effect on March 16. The regulation was issued by HHS in

April 1998 but has been the subject of three congressional

moratoriums, the most recent one set to expire on Thursday. Since

the rule was first published, UNOS has only made one change to its

liver allocation policy -- voluntary region-wide sharing for status

1 liver patients.

UNOS plans to refine the medical criteria for status 2B and

status 3, as it has already done for status 1 and 2A, which are the

more urgent categories. Waiting times would be de-emphasized, as

stipulated by HHS, and allocation priority would be established

based on a point system, which would not be devised until a forum

is convened in June or July. UNOS would then begin to address the

issue of broader sharing across geographic lines and for other

status groups.

" It's disingenuous to not address broader sharing at this

juncture. And the schedule UNOS has set is unacceptable. We should

be looking at both devising a point system and addressing broader

sharing at the same time -- and this should have been done long

ago. These past few years have seen a paucity of productive

discussions about how the transplant community will comply with the

performance goals of the HHS rule, " said Charlie , M.D.,

director of the Recanati/ Transplantation Institute at Mount

Sinai Medical Center.

" We need to make decisions that are in the best interest of

patients throughout the country, and we need to resolve this issue

now so that our time can be spent in more productive ways, like

increasing organ donation, " he added.

Although the Campaign disagrees with the UNOS timetable, it was

encouraged by the fact that the UNOS board recognizes two critical

concepts: the creation of consistent, objective and verifiable

listing and de-listing criteria, and broader sharing of donated

livers.

" This is a first step in the right direction and should serve as

an impetus for the other organ-specific committees to follow. It's

an ambitious plan that we hope UNOS can accomplish. This must be a

system driven by the patients and for the patients, not for and by

transplant centers or physicians, " said Kory, executive

director of Transplant Recipients International Organization

(TRIO), a Campaign participant.

The HHS regulation requires the contractor to submit by March 16

a revised liver allocation policy to be reviewed and approved by

the Secretary. UNOS has one year to submit allocation policies for

other organs. The policies must allow for the equitable allocation

of organs and be based on sound medical judgment; devised to avoid

organ wastage and promote patient access to transplantation; and

de-emphasize geographical considerations.

The current liver allocation policy emphasizes the local use of

organs even if there may be a sicker patient in another region. The

congressionally mandated Institute of Medicine (IOM) report

recommended broader sharing of organs to improve access for the

most medically urgent patients. It recognized that the current

system allows less sick patients in some areas to receive organs

when there are patients in greater need elsewhere in the country,

across artificial geographic boundaries. The IOM also called last

year's change in UNOS policy requiring sharing of livers within

UNOS regions for status 1 patients an " incremental improvement, "

which left " room for improvement, " and stated that broader sharing

for other urgent categories would reduce the number of deaths on

the transplant waiting list.

The goal of the Campaign for Transplant Patient Fairness is to

enhance support for a more equitable allocation system and a

nationwide effort to stimulate increased organ donation. It was

formed to represent a unified voice that seeks positive change on

behalf of patients and to guide the transplant community toward

reasonable resolution on very contentious issues. It is the only

group that includes representation by patient advocacy groups.

The Campaign has more than 20 participants, including: Minority

Organ Tissue Transplant Education Program, Mount Sinai Medical

Center, National Transplant Action Committee, Northwestern Memorial

Hospital, Transplant Recipients International Organization and the

University of Nebraska Medical Center.

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NOTE TO EDITORS:

SEE FOLLOWING PAGE FOR BACKGROUND INFORMATION.

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The Campaign for Transplant Fairness is a voluntary alliance of

the nation's leading patient advocacy groups, transplant hospitals,

and organ procurement organizations dedicated to enhancing

congressional support for a more equitable organ allocation system

and a nationwide effort to stimulate increased organ donation. The

Campaign seeks to save more lives and represents a unified voice

seeking positive change on behalf of patients. The Campaign also

works to guide the transplant community toward reasonable

resolution of contentious issues.

Participant organizations represent the full spectrum of the

transplant community, incorporating organizations from every facet

of the transplant community, large and small. The Campaign for

Transplant Fairness is the only organization to involve patient

advocacy groups. The Campaign has more than 20 participant

organizations, with new members constantly joining. Some

participants include:

Baylor University Medical Center

Children's Hospital of Pittsburgh

Children's Memorial Hospital (Chicago)

Minority Organ Tissue Transplant Education Program (MOTTEP)

Mount Sinai Medical Center

National Transplant Action Committee (NTAC)

Northwestern Memorial Hospital

OSF St. Francis Medical Center (Peoria)

Rush-Presbyterian-St. Luke's Medical Center

Transplant Recipients International Organization (TRIO)

University of California San Francisco ()

University of Chicago Hospitals

University of Illinois at Chicago

University of land Medical System

University of Nebraska Medical Center

University of North Carolina Hospitals

University of Pittsburgh Medical Center

University of Vermont / Fletcher Healthcare

There are more than 68,000 patients waiting for organ

transplants in the United States. Each day 10-12 people die while

still on the waiting list.

U.S. Newswire

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