Legislative Budget and Finance Committee A JOINT COMMITTEE OF THE PENNSYLVANIA GENERAL ASSEMBLY Offices: Room 400 • Finance Building • Harrisburg • Tel: (717) 783-1600 Mailing Address: P.O. Box 8737 • Harrisburg, PA 17105-8737 Facsimile (717) 787-5487 SENATORS JOHN R. PIPPY Chairman GERALD J. LAVALLE Vice Chairman JAY COSTA, JR. ROBERT M. TOMLINSON A Performance Evaluation of ROBERT C. WONDERLING JOHN N. WOZNIAK Pennsylvania’s Organ and Tissue Donor Awareness Program REPRESENTATIVES RON RAYMOND Secretary VACANT Treasurer H. SCOTT CONKLIN ANTHONY M. DELUCA ROBERT W. GODSHALL DAVID K. LEVDANSKY T. MARK MUSTIO Conducted Pursuant to HR 698 of 2006 EXECUTIVE DIRECTOR PHILIP R. DURGIN CHIEF ANALYST JOHN H. ROWE, JR. June 2007 Table of Contents Page Report Summary ................................................................................ S-1 Summary of Findings ........................................................................... S-5 Recommendations ............................................................................... S-15 I. Introduction ........................................................................................ 1 II. Background Information on Organ and Tissue Donation.............. 5 III. Findings: An Evaluation of the Implementation and Performance of Pennsylvania’s Organ and Tissue Donor Awareness Program 14 A. Program Definition and Administration.................................................... 14 B. The Promotion of Organ and Tissue Donation Through Statewide Public Awareness and Education Activities............................................. 43 C. The Introduction of Organ and Tissue Donation Awareness Programs in the Commonwealth’s Secondary Schools ........................................... 77 D. Donor Designation and the Development and Maintenance of a Statewide Donor Registry........................................................................ 100 E. Payments to Donors or Donors’ Families for Hospital, Medical, Funeral, and Incidental Expenses ........................................................... 111 F. Hospital Compliance With Required Request and Routine Referral Requirements Related to Organ Donation .............................................. 137 G. Organ and Tissue Donation and Transplantation Activity in Pennsylvania Since the Passage of Act 1994-102.................................. 144 H. Transplant Waiting Lists and the Continued Need for Program Services and Expansion of the Organ and Tissue Donor Registry.......... 162 I. Program Funding From Voluntary Contributions and Other Sources ...... 171 J. Program Planning, Budgeting, and Expenditures.................................... 183 K. Expenditure Management and Compliance With Statutory Spending Requirements.......................................................................... 201 L. Trust Fund Financial Condition ............................................................... 213 M. Review and Update of the State’s Anatomical Gift Act............................ 219 N. Compliance With Annual Reporting Requirements ................................. 225 i Table of Contents (Continued) Page IV. Appendices ................................................................................................. 227 A. Copy of House Resolution 698 of 2006................................................... 228 B. A Summary of Act 2006-65, The Pennsylvania Organ and Bone Marrow Donor Act ................................................................................... 230 C. Responses to This Report....................................................................... 231 ii Report Summary Organ and Tissue Donation Organ and tissue donation involves the removal of specific organs and tissues of the human body from a person who has recently died, or from a living donor, for the purpose of transplanting or grafting them into persons in need of such organs and tissues. Transplantable organs that can be donated include: the heart, intes- tines, kidneys, lungs, liver, and pancreas (referred to as solid organs). Tissues that can be donated include: bone marrow, bone grafts, corneas, heart valves, skin grafts, veins, and tendon grafts. Organs and Tissues for Donation Anyone of sound mind age 18 or older may decide to be an organ and tissue donor. Parents and guardians must consent to that decision by anyone between the ages of 16 and 18, and must also make that decision for other minor donors. There are, however, no age limitations on who can donate. The deciding factor on whether a person can donate is the person’s physical condition, not the person’s age. S-1 Advances in medical science and technology have made organ and tissue transplantations increasingly common and successful medical procedures. Each year, thousands of persons have their lives extended and their health improved by transplantation. For many individuals, these procedures literally provide them a “second chance at life.” Since 1988, more than 390,000 organs have been transplanted nationwide and, in 2006, a record 8,022 deceased donors provided 22,200 transplanted organs. Most transplants are deceased donor transplants, involving a donor who has experi- enced irreversible cessation of cerebral and brain stem function (referred to as neu- rologic determination of death). In attempting to deal with growing transplant waiting lists, the organ procurement and transplant community is seeking to ex- pand the pool of potential donors to also include donors whose death resulted from the cessation of heart function (referred to as circulatory determination of death). Living donation has also become more common in recent years. Living donation occurs when a living person donates an organ for transplantation, such as a kidney or a segment of the lung, liver, pancreas, or intestine. Living donors may be blood relatives, emotionally-related individuals, or altruistic strangers. Nationally, there were 6,726 living donors in 2006. Information on how to register as a donor in Pennsylvania is shown below. How to become a designated donor? Any adult may complete and have properly witnessed an organ and tissue donor card and/or ask that the “Organ Donor” designation be placed on a new or renewed Pennsylvania Driver’s License or Photo ID Card at the Photo License Center. All three are considered legal documents for the purpose of organ and tissue donation. Penn- sylvanians can now also register as an organ donor through a link to a secure PennDOT web page on the “Donate Life-PA” website (http://www.donatelifepa.org). Call 1-877-PA HEALTH or 1-877-DONOR-PA to get a free organ and tissue donor card to sign and carry with you. For more information regarding Organ Donation Designation on your Driver’s License, contact the Pennsylvania Department of Transportation. Pennsylvania’s Organ and Tissue Donor Awareness Program Over the past 25 years, a concerted national effort has been underway to raise awareness of the need for more donors and improved donation practices. At the state government level, governors, legislators, and policy officials are playing a key role in supporting these goals. To this end, many states have initiated special organ and tissue donation awareness programs to heighten public knowledge and awareness of the need for and benefits of organ and tissue donation and transplantation. S-2 With the passage of Act 1994-102, the Pennsylvania General Assembly estab- lished the statutory framework for such a program. Known as the “Organ and Tis- sue Donor Awareness Program” (OTDAP), this program seeks to increase donation rates in the Commonwealth through the implementation of a number of specific provisions contained in Act 102. The primary focus of the program is to increase organ and tissue donation by means of conducting and coordinating public education and awareness programs and activities. Act 102 went into effect on March 1, 1995. At the state government level in Pennsylvania, four agencies work with the Organ Donation Advisory Committee and the Commonwealth’s two federally- designated organ procurement organizations (OPOs) to administer the state’s Or- gan and Tissue Donor Awareness Program. The four involved state agencies are the Department of Health, which serves as the lead state agency, and the Depart- ments of Education, Revenue, and Transportation. The two organ procurement organizations that serve Pennsylvania are the Gift of Life Donor Program (GLDP) headquartered in Philadelphia and the Center for Organ Recovery and Education (CORE) located in Pittsburgh. These OPOs serve as the vital link between the donor and recipient and are responsible for the identification of donors and the retrieval, preservation, and transportation of organs for transplantation. Each OPO also provides public education in the community on the critical need for organ donations. The service areas for the GLDP and CORE are shown on the map below. To- gether the two OPOs work with approximately 300 hospitals and 16 transplant cen- ters in 66 of Pennsylvania’s 67 counties. Organ Procurement Organization Service Areas in Pennsylvania Erie Susquehanna Warren Mckean Bradford Potter Tioga Crawford Wayne Wyoming Forest Cameron Lackawanna Elk Sullivan Venango Pike* Mercer Lycoming Clinton Clarion Jefferson Luzerne Columbia Montour Monroe Lawrence Clearfield Centre Union Butler CORE Carbon Armstrong Northum- Snyder berland Northamp- Mifflin Schuylkill ton Beaver Indiana Juniata GLDP Lehigh Cambria Blair Allegheny Perry Dauphin Lebanon Berks Westmoreland Huntingdon Bucks

Load more