UNOS, OPTN, HRSA, SRTR, DHHS, CMS

Public Policy Organizations - Who are they and What do they do?

Department of Health & Human Services (DHHS): "The U.S. government's principle agency in protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves." Composed of 11 agencies (including HRSA) and 16 offices.

Health Resources and Services Administration (HRSA): In the past year, HRSA has taken on a much more active role in re-examining the treatment of living donors. In fact, they are currently not awarding any grants which seek to increase the rate of living organ donation due to the 'risk of imminent harm'

Organ Procurement Transplantation Network (OPTN): Established by the National Organ Transplant Act (NOTA) in 1984 as an agency under HRSA, OPTN is a "private, not-for-profit entity with an expertise in organ procurement and transplantation." However, unlike other government agencies, OPTN is 'outsourced' so to speak, or 'contracted' to an outside agency. In this case, UNOS.

"The primary purposes of the OPTN are to operate and monitor an equitable system for allocating organs donated for transplantation; maintain a waiting list of potential recipients; match potential recipients with organ donors according to established medical criteria for allocation of organs and, to the extent feasible, for listing and de-listing transplant patients; facilitate the efficient, effective placement of organs for transplantation; and increase organ donation."

NOTA did not address living donors or living donation. The law's primary function was to create a national waiting list and develop organ allocation policies to standardize the uneven state laws which had been reducing efficiency and endangering people's lives.

United Network for Organ Sharing (UNOS): In the same way Lockheed Martin built rockets for NASA, UNOS is the contractor that manages OPTN.

From OPTN's charter: "The OPTN is a part of the OPTN Contractor’s organization and operations. The OPTN Contractor is United Network for Organ Sharing (UNOS), a Virginia non-stock, not-for-profit corporation which is qualified as a tax-exempt public charity under Section 501(c)(3) of the Internal Revenue Code"

Many think UNOS and OPTN are the same thing - they are not. The confusion arises because the current UNOS Board presently serves also as the OPTN Board of Directors. However, OPTN will exist as a sub-department of HRSA regardless of who, or which entity, administers the contract.

According to the website, UNOS' primary goals are to:

- increase and ensure the effectiveness, efficiency and equity of organ sharing in the national system of organ allocation

- increase the supply of donated organs available for transplantation

Also on the website are the ways in which UNOS claims they are meeting the above goals. However, there is much disagreement on their claims.

Advisory Committee on Organ Transplantation (ACOT): Established in 2000 as a result of 42 U.S.C. Section 217a, Section 222 of the Public Health Service Act, as amended, and 42 CFR 121.12, this committee serves under HRSA to advise the Secretary of Health "on all aspects of organ donation, procurement, allocation, and transplantation, and on such other matters that the Secretary determines. One of its principal functions shall be to advise the Secretary on ways to maximize Federal efforts to increase living and deceased organ donation nationally."

"The Committee shall...review significant proposed OPTN policies...to recommend whether they should be made enforceable. It shall provide expert input to the Secretary on the latest advances in the science of transplantation, the OPTN's system of collecting, disseminating and ensuring the validity, accuracy, timeliness and usefulness of data, and additional medical, public health, ethical, legal, financial coverage, social science, and socioeconomic issues that are relevant to transplantation."

The 25 members of ACOT "shall be...external to the OPTN governing Board of Directors."

Scientific Registry of Transplant Recipients (SRTR): Founded in 1987, SRTR is a national database of all transplant statistics. Unlike OPTN, who simply gathers data, SRTR analyzes data from multiple sources and draws conclusions from it. Despite the organization's name, they do handle data regarding living donors and donation (see May 2008 ACOT meeting notes for such a presentation)

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