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Subject: FAQ: bit.listserv.transplant, Organ transplant ng (Part 1 of 4)

This article was archived around: 21 May 2006 04:22:46 GMT

All FAQs in Directory: medicine/transplant-faq
All FAQs posted in: bit.listserv.transplant, sci.med
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Archive-name: medicine/transplant-faq/part1
Anti-spam: This entire domain and all associated e-mail addresses are located in the State of Washington, and sending mail to addresses at this domain is subject to the provisions of the Revised Code of Washington. Part 1 of bit.listserv.transplant FAQ Last updated 3/23/02 Updated subscribe information for DIALYSIS email discussion list Part 1, section I. Contents Part 1: I. Discussion forums TRNSPLNT mail list - How to subscribe DIALYSIS mail list - How to subscribe Caregivers Support Group Australian Transplant and Dialysis discussion list Second Wind discussion list Kidney/Pancreas Support Group HTX, Heart and Lung Transplant Support Group LiverSupport-L The Organ Transplant Support Group Chat List of weekly transplant chats online II. Selected organ and tissue transplant info via gopher and WWW III. Organ donation and transplantation, frequently asked questions IV. The organ donor shortage V. Transplant and organ donation myths VI. Organ donor awareness postage stamp campaign and other awareness materials Part 2: I. Things your doctor may not have told you - Bits of advice for transplant patients Everyday stuff Drinking water Ibuprofen Packing for the hospital II. Sources of information on organ and tissue donation, transplantation, and transplant centers Patient support groups, services, books and videos Religious organizations views on organ donation - National Donor Sabbath web site List of US lung transplant centers Living-Related Liver Transplant Programs in the US III. Non-US professional transplant organizations and patient support groups IV. Transplant fund raising V. Live kidney donor information VI. Renal transplant specific sources and information VII. Bone marrow transplant specific sources Bone marrow donation information Part 3: I. National Transplant Patient Resources Directory II. Other Resources a. Other companies offering pharmaceutical delivery services b. Financial and travel assistance c. Medicare drug cost coverage d. Additional government programs of interest e. Patient specific education, support, and products Part 4: From TransWeb I. Organ and Tissue Donation: A Gift of Life What do I do if I want to donate? Top 10 Misconceptions About Organ Donation II. Ask TransWeb Questions and Answers III. Frequently Asked Questions IV. Organizations Promoting Donation About this FAQ -------------- This FAQ is archived at rtfm.mit.edu and available by anonymous ftp under pub/usenet-by-group/bit.listserv.transplant. Its available by gopher from any site with a link to the MIT ftp archive, such as ccsun42.csie.nctu.edu.tw where faqs are listed under newsgroup hierarchy. URL: http://www.lib.ox.ac.uk/internet/news/faq/bit.listserv.transplant.html or http://www.faqs.org/faqs/medicine/transplant-faq/part1/index.html The subjects treated in this FAQ are, for the most part, specific for the state of organ and tissue transplantation in the United States. If anyone would be interested in providing information that might be helpful to people of other countries please let me know. If anyone has other information they would like to have included in this FAQ please send it along. Many thanks to the people who have contributed information and otherwise helped with the FAQ: Alex Bost, Dan Flasar, Kimberly Montgomery, Arthur Flatau, Katherine Eberle, Anne Treffeisen, Rosalie Katchen, Joel Newman, Gerald Huber, Ken Lifton, Dale Ester, Jim Warren, Jeff Punch, Fritz Dolak, Julio Real, John Abbott, Marion Leska, Karen Couture, Lou Bushfield, Lisa Carroccio, Kandy Darroch, Dorothy Bourdon, and Luis Enrique Acero. Mike Holloway mike_holloway@hotmail.com ========================================================================= I. Description of the TRNSPLNT mail list and bit.listserv.transplant ========================================================================= The Usenet newsgroup bit.listserv.transplant is a bi-directional echo of the listserv mail list TRNSPLNT. If you have an interest in transplantation, and think that the posted news and discussions are of interest, it may be more convenient for you to subscribe. Be sure to save the instruction file that is sent to you automatically when you subscribe. To have a list of listserv commands sent to you, send mail to LISTSERV@WUVMD.WUSTL.EDU and place either HELP or INFO REFCARD on the first line of text. This list includes commands for unsubscribing, setting your subscription to "nomail", and other useful commands. To remove yourself from the list, send SIGNOFF TRNSPLNT. All posts to TRNSPLNT or bit.listserv.transplant are archived by the listserv system at Washington U. You can get an index of the archive by following the directions below in Dan's introduction. You can search the archive as a database and retrieve individual articles via a keyword search by following the directions in the file obtained by sending INFO DATABASE to LISTSERV@WUVMD.WUSTL.EDU Below is the introduction to TRNSPLNT written by Dan Flasar. Since Dan started the group early in 1993 the posts have been on everything from copies of news and information to recipes for low salt diets. It has been a useful electronic support group for some participants who are either waiting for a transplant, recovering from a transplant, or just getting on with life after a transplant. We encourage recipients, caregivers and medical professionals to introduce themselves to the group. The list is also a tool for organ and tissue donor education. ------------------------------------------------------------------------- TRNSPLNT on LISTSERV@WUVMD.WUSTL.EDU TRNSPLNT is a discussion list for organ transplant recipients and anyone else intested in the issues, experiences and realities of living with an organ trasplant. Over the last 30 years, the number of transplants performed each year has grown steadily in both absolute numbers and type of organs transplanted. Though there are hospital, clinical and pharmaceutical industry-sponsored newsletters, there are few, if any, completely independent discussion forums for those who have experienced this oftentimes dramaticaly effective therapy. There are many life issues for the transplant patient that are simply not covered in medical literature or by medical personnel. TRNSPLNT will provide a way for members to share information on such things as as travel, both domestic and abroad, how to deal with a compromised immune system, stories about transplant experiences, and anything that the members feel is worth discussing. Archives of TRNSPLNT postings can be listed by sending an INDEX TRNSPLNT command to LISTSERV@WUVMD.WUSTL.EDU. To subscribe, send the following command to LISTSERV@WUVMD.WUSTL.EDU via email: SUB TRNSPLNT Your Full Name where "Your Full Name" is your name. For example: SUB TRNSPLNT Billy Rubin Owner: Dan Flasar SYSFLASAR@WUGCRC.WUSTL.EDU A web page form is also available for subscribing at http://trnsplnt.tsx.org NOTE: This is NOT a medical forum! Though advice may be offered, you should, as with any medical issue, check with your physician before you accept anything said in this forum as a basis for doing anything that might affect your physical condition! DIALYSIS -------- (from Julie <clarify@alum.mit.edu> ) To subscribe to the list see http://groups.yahoo.com/group/dialysis_support/ or email dialysis_support-subscribe@yahoogroups.com Chat groups ----------- The Lung Transplantation Page Chat http://homestead.deja.com/user.lungtxpsych/index.html WEEKLY TRANSPLANT CHATS ONLINE From Kandy S. Florida <Kandysfl@AOL.COM>: Sunday, 9:00 PM ET, Organ Transplant Chat Talk City http://www.geocities.com/~rolo1/community.html Contact: gmreilly@snet.net Sunday, 10:00 PM ET, Kidney/Pancreas Transplant, AOL: Private Room aol://2719:2-2-kidney%20pancreas%20tx Contact: OhLarry922@aol.com Monday, 7 PM ET, Kidney/Pancreas Transplant Chat OTA: http://organtx.org/chatroom.htm Contact: CarolG@organtx.org Monday, 8:00 PM ET, Donor Awareness, AOL: allHealth, aol://2719:3-1453-Helping%20Hand%20Cafe Contact: BHostMich@aol.com or HOST AHTH Blu@aol.com Monday, 9:00 PM ET, Liver Disease & Transplant AOL: allHealth, aol://2719:3-691-Mutual%20Support%20Room Contact: HOST AHTH Kandy@aol.com or HOST AHTHLiv@aol.com Tuesday, 8:00 PM ET, Organ Transplantation & 2000 U.S. Transplant Games Team Minnesota http://www.sadiehawkins.com/gameschat.htm Contact: dick@sadiehawkins.com Tuesday, 9:00 PM ET, Carols lung tx room AOL: Private Room, aol://2719:2-2-Carols%20lung%20tx%20room Tuesday, 9:00 PM ET Bone Marrow Transplant AOL: Private Room, aol://2719:61-2-bmt%20support%20online Tuesday, 10:00 PM, Kidney Pancreas Transplant AOL: Private Room, aol://2719:2-2-kidney%20pancreas%20tx Contact: HSchrei686@aol.com Wednesday, 7:00 PM ET, All Organs & Tissues Transplant DrKoop: Communities: Health Central https://www.drkoop.com/_mem_bin/formslogin.asp?http://drkoop.com/community/cha t/chat.asp?room=healthcentral Wednesday, 9:00 PM ET, Liver Disease and Transplants OTA: http://organtx.org/chatroom.htm Contact: JamHil@aol.com Wednesday 10: 00 PM ET, Kidney/Pancreas Transplant Chat & ESRD AOL: allHealth, aol://2719:3-691-Mutual%20Support%20Room Contact: HOST AHTH Blu@aol.com or HOST AHTH KLIX@aol.com Thursday, 7:00 PM ET, Heart Transplant AOL: allHealth, aol://2719:3-193-Health%20Conference Contact: HOST AHTH Max Thursday, 8:00 PM ET, Organ Transplantation & 2000 U.S. Transplant Games Team Minnesota http://www.sadiehawkins.com/gameschat.htm Contact: dick@sadiehawkins.com Thursday, 9:00 PM ET Bone Marrow Transplant AOL: Private Room, aol://2719:61-2-bmt%20support%20online Thursday, 9:00 PM ET, Lung Transplant Chat SecondWind: http;//www.2ndwind.org/main.htm Contact: luckylungsforjo@aol.com Thursday, 10:00 PM ET, Children's Liver Chat Children's Liver Alliance http://www.livertx.org Contact: Livers4Kids@earthlink.net or call 718-987-6200. Friday, 8:00 PM ET, Kidney Disease & Transplant AOL: Private Room, aol://2719:2-2-Kidney Contact: BLUBFLY@aol.com Friday, 9:00 PM ET All Organs & Tissues Transplant AOL: allHealth, aol://2719:3-49-Positive%20Reflections Contact: HOST AHTH Kandy@aol.com or HOST AHTHLiv@aol.com Saturday, 7 PM ET, Dealing with End-Stage Disease and Death OTA: http://organtx.org/chatroom.htm Saturday 9:00 PM ET, Parents of Bone Marrow Tx Recipients AOL: Private Room: aol://2719:61-2-bmt%20support%20online Satuday 9:00 PM ET, Transplant Pre n Post Support Community Talk City: www.tpnp.org/community.html, #Transplant channel Contact: gmreilly@snet.net Caregivers Support Group ---------------------------- From Evelyn Heering (ev48@aol.com): This list is for the spouses, family members and caregivers of lung disease patients, lung transplant recipients and of those waiting for lung tranpslants only. We are here to help each other cope with the waiting and the post transplant times as well. To subscribe to this list send your request to: ASSIST-request@HOME.EASE.LSOFT.COM Please include the diagnosis of your loved one, your relationship (spouse, parent, sibling, etc.) and whether the person has been transplanted or is waiting. Australian Transplant and Dialysis discussion list -------------------------------------------------- RALPH NEWMAN <rnewman@tpgi.com.au>: Announcing the establishment of a new email listserver (actually Majordomo - Ed.) in Australia, open to all, set up for both Transplant and dialysis discussion. It is still a small group and we would welcome your input. It can be found on the web, where there is an automatic subscribe site, found at http://www.wagga.net.au/transplant Second Wind discussion list --------------------------- (see Second Wind National Lung Transplant Patient's Association web site in section II below http://www.2ndwind.org) Messages concerning lung diseases, lung transplants, problems, solutions, and life in general. Subscription form: http://www.2ndwind.org/join.htm Kidney/Pancreas Support Group ----------------------------- Since dealing with the long term chronic condition and complications from years of Diabetes, still affects people after a transplant, we formed this group a few years ago to deal with those issues. Many people stay on both lists. We now have about 75 people participating in the KPTX group. To subscribe, Send a blank email to: kptx-subscribe@makelist.com If you have questions or problems, write to me at: alangluc@soca.com HTX, Heart and Lung Transplant Support Group -------------------------------------------- Chris Molnar (StephenKyl@aol.com) HTX - An online mailing list for support and information sharing for families and individuals dealing with heart or heart-lung transplants due to childhood-onset heart disease. Subscribers facing the possibility of transplant or otherwise interested in the issues surrounding transplanted survivors of childhood-onset heart disease are also welcome. To subscribe: send email to: majordomo@tchin.org message: subscribe htx LiverSupport-L -------------- from Ron Koestler [koestler@ix.netcom.com] LiverSupport-L@onelist.com. The list owner can be reached at LiverSupport-L-owner@onelist.com. People can subscribe by sending mail to LiverSupport-L-subscribe@onelist.com. The Organ Transplant Support Group Chat --------------------------------------- http://www.jensoft-cs.com/icqlist.html We encourage all members to get ICQ and provide us with their ICQ numbers. We will list the ICQ numbers of all members, allowing quick contact with members for anyone who may visit this page. ICQ empowers members with a means to chat whenever they like and enables them to share ideas, discuss similar interests or anything else. ========================================================================= II. Selected organ and tissue transplant info via gopher and WWW ========================================================================= There is no attempt here to make a comprehensive list of web resources for transplantation. Instead, the sites below are meant to provide some of the best resources for patients and the general public, with particular reference to information on organ donation. Gopher ------ Yale Biomedical Gopher gopher://info.med.yale.edu/11/Disciplines/Disease/Transplant/ Contents: Bone Marrow Transplant Information (U. Penn. Med. School) Gallup Poll on Attitudes Towards Organ Donation HRSA organ transplantation fact sheet Directory Issues of UNOS Update Legislative history of organ donation Live kidney donor information National Resource Directory for transplant patients (updated 3/94) Organ trafficking myths Critique of French film "Organ Snatchers" Organ trafficking myths Report to UN on Child Organ Trafficking Rumor UNOS paper on organ theft myths Organ transplants increase; donation shows little change Relevant articles from National Kidney Foundation Newsletter Religious and cultural views on donation Transplant ethics Transplant fund raising (from BMT Newsletter, 11/93) UNOS Brochures Xenograft transplantation: "The Transplant Gap" World Wide Web -------------- American Liver Foundation disease information brochures ------------------------------------------------------- http://www.gastro.com/liverpg/livdz.htm American Share Foundation WWW page ---------------------------------- http://www.asf.org maintainer: jsabbott@ix.netcom.com (JOHN S. ABBOTT) Partial list of contents: Kid's Space=20 1995 Transplant Desk Reference Questions a Patient Should Ask Answers to Commonly Asked Transplant Questions What Every Patient Needs to Know about UNOS Transplant Centers OPOs - Organ Procurement Organizations The American Society of Transplant Physicians --------------------------------------------- http://www.astp.org/ ASTP is a multidisciplinary group of physicians and scientists dedicated to the promotion of education and research relating to transplantation medicine and immunology. News and abstracts of the journal "Transplantation" available. Biliary Atresia & Liver Transplant Network ------------------------------------------ http://www.asf.org/balt.html (see Part 3, section IIe) BODY British Organ Donor Society -------------------------------- http://www.argonet.co.uk/body/index.html This site covers topics on organ donation and transplantation, both in the UK and Worldwide. Your requests for topics you would like to see included are welcomed. Please send them to body@argonet.co.uk Coalition on Donation --------------------- http://www.shareyourlife.org/ Slick web page with donor education and myths information. "The Coalition on Donation is a not-for-profit alliance of local coalitions and national organizations who have joined forces to promote organ and tissue donation. The Coalition has created national education/action campaigns for distribution by our 50 local coalition affiliates." The Delaware Transplant Program (DVTP) -------------------------------------- http://clever.net/wwwmall/dvtp/index.html The Delaware Valley Transplant Program is the non-profit organ tissue donor program serving hospitals and patients in the eastern half of Pennsylvania, southern New Jersey and the state of Delaware. Founded in 1974, DVTP is one of the federally designated organ procurement organizations in the U.S. The program coordinates the recovery and allocation of organs and tissues for transplant and is a part of the nation's organ procurement and sharing network. DVTP is also the primary source for donor cards in the region and conducts hundreds of community and professional education programs each year. Donor Network of Arizona ------------------------ http://www.donor-network.org/dnet/ We are located in downtown Phoenix, Arizona 3877 N. 7th Street, Suite #200 Phoenix, Arizona 85014 (602)222-2200 1-800-94-DONOR -Organ Donation for Transplant and Research -Donation of Bones and Tissues for Transplant and Research -Eye Donation and Corneal Transplant -Public Education (General Donation & Transplant Information) -DNA'S Vital Link (A Quarterly Publication) -DNA'S Legislative Update The Friends' Health Connection ------------------------------ http://www.48friend.com The Friends' Health Connection is a non-profit organization and the premiere organization that provides customized, one-to-one support for individuals and/or their families with health-related problems. We now have a national toll-free phone line that you can call Monday through Friday, 9:00 AM-5:00 PM to speak directly with a representative from our organization. It is 1-800/48-FRIEND or 1-800/483-7436. e-mail: fhc@pilot.njin.net Gift of Life Trust Fund of South Carolina ----------------------------------------- http://www.giftoflife-sc.org/ Site includes information on organ donation, support groups and programs for transplant patients, patient stories, and links to other information sites. HCFA, The MEDICARE and MEDICAID Agency -------------------------------------- http://www.hcfa.gov Health care financing news, Information about the Medicare Program, etc. HHS organ donation information ------------------------------ http://organdonor.gov/ Wide array of information on organ donation and organ donor education. Current statistics. National Donor Sabbath information. Donor card. HHS/HRSA Solid Organ Transplantation Information ------------------------------------------------ http://www.hrsa.dhhs.gov/osp/dot/solid.htm Technical Data - Includes statistics on the Waiting List, Number of Organs Recovered and Transplanted, Survival Rates, etc. Fact Sheets Glossary of Terms Commonly Asked Questions about Organ Donation - Includes excerpts from Questions & Answers about Organ Donation, as well as links to Steps Involved in Donation and Transplantation, How are Recipients Matched to Donor Organs, and Why Should Minorities be Particularly Concerned about Organ Donation? History of the OPTN and Scientific Registry - Includes summarized organ allocation policies, Scientific Registry information, and a brief history of UNOS and its role in the OPTN and Scientific Registry. Organ Procurement Organizations (OPOs) by State List of UNOS Member Transplant Programs by State Life Connections of Ohio ------------------------ http://www.mco.edu/hosp/lifeconn Contains excellent information on donation and transplantation, as well as extensive answers to frequently asked questions about donation. Mission Life Connection of Ohio is dedicated to increasing and facilitating the recovery of high quality organs and tissues for transplantation. London Health Sciences Centre Multi-Organ Transplant Program ------------------------------------------------------------ Has several informative articles on organ donation and transplant information, with references. http://www.lhsc.on.ca/transplant/index.htm Missouri Kidney Program ----------------------- Contact person: David Patterson <mokpdave@muccmail.missouri.edu> http://www.missouri.edu:80/~mokpwww The Missouri Kidney Program in Columbia Missouri (MoKP). We are developing an End Stage Renal Disease (ESRD) and related issues web site for patients, providers and others who are interested. Currently our web site houses our most recent annual report detailing who MoKP is as well as some statistics about patients in Missouri. We also maintain to links to other related areas. National Donor Sabbath Resource Kit 1997 ------------------------------------------------------------------- http://www.transplantawareness.org/sabbath/CONTENTS.html Jennifer Grant at the HHS Division of Transplantation has assembled opinions from all religious organizations in the US regarding organ donaiton, and give suggestions of how congregations can participate in the National Donor Sabbath (Nov. 13-15, 1998). NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD),INC. ---------------------------------------------------- http://www.pcnet.com/~orphan/ This organization manages a drug cost share program for individuals who cannot afford Sandimmune (cyclosporine). See Part 3, section I. National Transplant Assistance Fund ----------------------------------- http://www.LibertyNet.org/~txFund Formerly National Heart Assist and Transplant Fund e-mail: txFund@LibertyNet.org VOICE 800-642-8399 / Fax 610-527-5210 National Transplant Assistance Fund is dedicated to providing financial, social and emotional support to transplant candidates. NTAF counsels patients regarding location and cost of transplant centers and other possible sources of financial assistance. NTAF helps the patients' families organize fundraising in their communities while assuring fiscal accountability as trustee. The organization is also deeply committed to educating the public about the critical need for organ donation, lecturing community groups on organ donor awareness and distributing free organ donor materials upon request. New England Organ Bank ---------------------- One Gateway Center Newton, MA 02158 800/446-6362 Contact address: info@neob.com http://www.ultranet.com/~neob/index.html Very nice on-line donor card available. Information on donation and transplantation Organ and Tissue Donation Transplantation Attitudes toward organ and tissue donation Deciding on organ and tissue donation The Gift of Life! Information on becoming and organ and tissue donor Print a donor card to sign. Tell your family. We will send you information. Just fill out this form. Information for Donor Families and Recipients NEOB Donor Family Services Donor Family Quilt Corresponding with donor families and recipients Novartis Pharma (formerly Sandoz) Transplant Square --------------------------------------------------------------------- http://www.transplantsquare.com/index.htm Just as the town square used to be the central meeting place where people exchanged information and ideas, the Transplant Square from Novartis Pharma Ltd. is being offered on the Internet as a service to the wordwide transplant community -- patients, healthcare professionals, support networks, and other interested audiences. We are committed to advancing the science of transplant medicine, and to providing you with up-to-date information in the field of transplantation. Organ Transplant Association ---------------------------- http://organtx.org/ A web site organized by patients, families, and volunteers for the purpose of providing resources and support over the Internet. Contains the archives Kandy Darroch's "Medical Meanderings" newsletter. Medical Meanderings contains informative articles on transplantation topics. The site also contains a list of organizations providing financial support, or counseling, to transplant patients, a well maintained list of transplant related chat groups, information on laptop lending to patients in the hospital, and other useful resources. Organ Transplant Patient Home Page ---------------------------------- http://www.hooked.net/users/chartsf/txp/txphome.htm#chrono Carl Hart <chartsf@hooked.net>: There are numerous sites with transplant information; some pages are dedicated to health care practitioners, others to patients and their families. However, I found the information to be piecemeal, in no logical order. I began to think back to my own experience with my father's heart transplant: What information could I have used, and when could have I used it? Thus, I recognized that one way to present this information logically was to present it in a chronologically based Table of Contents: after the shock of the diagnosis and prognosis; becoming informed about the procedure; determining where the transplant may take place; qualifying for the treatment (i.e., meeting the medical and insurance/financial criteria); entering the transplant program; undergoing the transplant procedure; and, complying with the aftercare instructions and addressing complications. The Partnership for Organ Donation ---------------------------------- http://www.transweb.org/partnership/index.html The Partnership is an independent, non-profit organization dedicated to saving and improving lives by closing the gap between the number of organ transplants that are possible and the number of organ transplants that actually occur. If you would like more information about us and the work we are doing to help solve the organ donor shortage, please contact us at info@organ-donation.org or call (617) 482-5746. Contents: How the Partnership Fulfills Its Mission Progress Notes: The Partnership's newsletter Progress Notes Archive Public education: A Different Kind of Love Letter and the Gallup Survey A brief history of The Partnership for Organ Donation A list of our Board members and Advisory Board members Recent press releases The Partnership's Bibliography The Partnership for Organ Donation Scientific Abstracts (accepted) Job opportunities (when available) Sponsors Renalnet Home Page ------------------ http://ns.gamewood.net//renalnet.html Partial contents: Dialysis Clinical Information ESRD Program Financing ESRD Providers ESRD Vendors and Manufacturers Government & Education Healthcare Resources Nephrology Professional Organizations Nephrology Research Presentations Organ Transplantation Featured General Healthcare Resources Second Wind National Lung Transplant Patient's Association ----------------------------------------------------- http://www.2ndwind.org A Network of General Information and Support For both pre and post lung transplant patients and their families. -Members Network E-Mail Address Listings -Financing Transplantation -Members Stories & Letters -Information on Specific Lung Transplant Related Diseases -Member profiles E-mail Addresses ,homepage links -"AirWays" Newsletter -Articles & Items of interest -Nutrition Center -Organ Donation Information Stadtlanders' Pharmacy ---------------------- http://www.stadtlander.com Transplant National Resource Directory Article Archives: These articles have been adapted from Stadtlanders' magazine. Surviving Transplantation ------------------------- Dr. John Craven <jcraven@julian.uwo.ca>: Surviving Transplantation is intended as a guide to coping for persons undertaking major organ transplant. Any ideas contained within this book should be considered in the context of your personal health circumstances. As you will read in several places in Surviving Transplantation, we recommend that you consult a physician or another health professional before undertaking to make any changes in your personal health care. http://www.stjosephs.london.on.ca/SJHC/programs/mental/survive/st.htm Transplant Awareness Inc. ------------------------- Transplant Awareness Inc. sells T-shirts, car license plate frames, pins, and other items, which have slogans that promote organ and tissue donation. TAI is a nonprofit corporation run and operated by volunteers who are all organ transplant recipients. Our objective is to market products that will promote organ donation by increasing awareness among the general population. It is our hope that TAI's efforts will result in more organs being donated and more lives being saved and prolonged in the manner that our lives were. Since we are all non-paid volunteers, 100% of the profit from the sale of our merchandise goes to increasing organ and tissue transplantation awareness. We thank our donors for the lives we can now live and we thank you for your patronage of our efforts. Wide variety of donation and patient resources listed under "Other Transplant Resources " http://www.transplantawareness.org/ Transplanthealth.com -------------------- http://www.transplanthealth.com is an educational Web site that offers transplantation information, message boards, and interactive features for kidney, liver, and other organ recipients and donors. Features patient education information, a message board, and information links. On-line registration required. Transplantweek -------------- http://www.transplantweek.org Latest news about transplanation. The Transplant Week online newsletter, presenting the latest news and views on developments in transplantation, is one of a family of specialized medical newsletters brought to you by Medical Week, LLC TransWeb -------- TransWeb is a world wide web page for sharing information on organ donation and transplantation. The page is continuously seeking contributions of new material, as well as ideas for making it a more useful forum for the transplantation community. TransWeb can be found at http://www.transweb.org and suggestions and contributions can be sent to transplant.webmaster@umich.edu Partial list of contents: Focus on Transplant Patients Ask TransWeb Frequently Asked Questions Experiences with Transplantation and Donation Transplant Medications New Developments in Transplantation Policy and Legislative Updates Support, Advocacy, and Educational Groups & Resources The Transplant Memorial Reading List, Articles, Videos, etc. Information for Medical Professionals New Developments in Transplantation Political/Legislative Updates Ask TransWeb Cybercongress: Transplantation in the Next Millennium Congress on Xenotransplantation UNOS's Calendar of Events Organ and Tissue Donation: A Gift of Life Test Your Knowledge of Organ Donation! The Donation Quiz Frequently Asked Questions: Top Ten Misconceptions about Donation Can well-connected people like Mickey Mantle get transplants faster? How many people need organs? See also thewaiting list statistics at UNOS. Does my religion approve of donation? What kinds of tissue can be donated? What do I do if I want to donate? Can I donate NOW? Where can I register to be a bone marrow donor? Articles About Donation: The Tissue Shortage From Oncolink: Measures to Safeguard Human Tissue Transplants Experiences With Donation: Feelings of a Living Kidney Donor A bone marrow donor's experience A special thank-you letter "The Gift That Lives On" Promoting Donation: The Wendy Marx Foundation The Transplant Memorial Transplantation Resources on the Internet (A comprehensive list of links for related sites on the net.) Transplant News ---------------- http://www.trannews.com/ The only independent newsletter offering timely news on Organ, Tissue, Eye and Bone Marrow Procurement and Transplantation. Find out how to receive a FREE copy of the Transplant Video Journal. TRIO (Transplant Recipients International Organization, Inc.) ------------------------------------------------------------- http://www.primenet.com/~trio/ TRIO is a major transplant patient support, and government lobbying, organization. This site offers recipient and donor family support. Large available publications list. Current news. Local chapter information. Email: trio@primenet.com UCLA Transplantation -------------------- http://www.medctr.ucla.edu/dept/xplant/default.htm So far available is a description and statistics of the Dumont-UCLA Transplant Center. Other things under construction: Abstracts not Currently under Copyright A Moderated Newsgroup on Issues in Liver Transplantation Static and Video Images of Procedures Slide Show Presentations University of Colorado's Organ Transplant Web Page -------------------------------------------------- http://www.uchsc.edu/ctrsinst/organtx/ UNOS Transplantation Information Site ------------------------------------- (See also section VII for more information on UNOS.) http://www.unos.org UNOS is a non-profit organization responsible for promoting, facilitating, and scientifically advancing organ procurement and transplantation throughout the United States while administering a national organ allocation system based on scientific and medical factors and practices. Issues of the very informative news magazine UNOS Update have begun to be posted. The site also has up-to-date transplant statistics, resources available, and calls for public comment on policy changes. World Children's Transplant Fund -------------------------------- http://www.wctf.org/ The World Children's Transplant Fund (WCTF) is a unique and special organization. Our mission is to provide as many opportunities as possible for lifesaving pediatric transplant surgery to children of the world. Our goal is to assist nations in developing and then sustaining independent pediatric organ transplant programs. Coordinating and sharing of our medical resources enables children of lesser developed countries access to the chance which children of the United States routinely have...the chance for life. The Strategy of the World Children's Transplant Fund focuses on developing World Children's Transplant Centers attached to preexisting medical facilities in each of the selected site locations. World Children's Transplant Fund 16000 Ventura Blvd. Suite 103 Encino, California 91436 Phone: (818) 905-9283 Fax: (818) 905-9315 E-Mail to: info@wctf.org ========================================================================= III. Organ donation and transplantation, frequently asked questions ========================================================================= contributed by Alex Bost, alex@unx.sas.com *** Commonly Asked Questions About Being an Organ Donor: - Where can I get an Organ Donor Card? Many organizations, including the NKF and AAKP will provide donor cards free of charge. Many physicians, pharmacies, and hospitals will also provide them. [Free cards and pamphlets also available from (800)24-DONOR] - Should I mention being an Organ Donor in my Will? No. Your will may be read too late to take your organs. However, you should definitely mention Organ Donation in your Living Will. - What is a Living Will? A Living Will is a document where you stipulate what kind of medical attention you will receive if you are unable to make decisions for yourself. You may state your wish to become an organ donor in a Living Will. - Who pays for the medical costs of being a donor? The transplant recipient is responsible for all costs involved in organ procurement. The donor's family will not pay any of the cost. - Does organ donation disrupt funeral arangements? No. Organ donation will not disfigure the body. A donor may still have an "open casket" funeral. - Will becoming a donor mean a doctor will let me die? Absolutely not! Medical personnel must follow very strict guidelines before a donor can be pronounced dead. You can expect the same quality of health care as you would if you weren't a donor. ------------------------------------------------------------------------ The following was written by Anne Treffeisen of the Long Island Chapter of TRIO (Transplant Recipients International Organization) (516-421-3258). The last week of April is National Organ and Tissue Donor Awareness Week (NOTDAW). She asks that pastors or rabbis include mention of the gift of life in their sermon or bulletin during this week and provides this message as a guide. ORGAN DONATION AND TRANSPLANTATION FACT SHEET The donation of organs is a unique opportunity to save lives. It is possible for the organs, tissues, and corneas of a single donor to save or help as many as 25 people. Transplantation works. As of 1993, over 160 thousand people have been transplanted, and the majority are living full productive lives more than five years after surgery. Over 28,000 people in the United States, many of them children under 10 years of age, are currently waiting for transplants, and someone is added to the waiting list every 30 minutes. Many will die waiting. All potential recipients are listed on the United Network for Organ Sharing, UNOS, computer. Organs are assigned as they become available considering the severity of a patient's condition, medical requirements (such as blood type, size, and tissue match), proximity to the available organ, and time on the waiting list. More organ donors are needed. Only about 20% of the potential donors actually have their organs donated. Organ donors are healthy people who have died suddenly, usually through accident or head injury. They are brain dead. The organs are kept alive through mechanical means. No one involved with the life saving care of an individual is involved in the transplantation or organ recovery process. No one on the transplant team has any role in the diagnosis, treatment or declaration of death of a patient. Organs for transplant must be made available soon after death. Organ removal will not take place without the permission of the next of kin. Therefore, the decision to donate should have been discussed earlier and the next of kin should understand and be prepared to carry out their loved one's wishes. This is the heart of DONOR AWARENESS. There is no cost or payment to the donor family or estate. All normal funeral arrangements are possible. All religious groups approve of organ and tissue donation as charitable acts toward one's fellow human beings. Organ donation is a true gift. In general, the donor family will never know the recipient. They do know that out of their tragic loss, they have given others life and health. Questions frequently asked by transplant patients: -------------------------------------------------- (see also UNOS pamphlets in Yale biomed gopher, information in TransWeb, American Share Foundation WWW site, section II) Contributed by Joel Newman <newmanjd@UNOS.ORG>, UNOS Manager of Corporate Communications *What's my position on the list? Candidates and donors are matched by data, not rank. The only thing you could be "ranked" by, in theory, is your waiting time. You could be #1 on your local list by waiting time, having waited longer than everyone else. However, if you're blood type B and a type A organ comes along, you'd automatically be excluded. The same is true for organ size, tissue match, etc. Given that all donors and all candidates differ in some respects, you could be 20th on the list for one offer, 3rd for the next, then 57th, then 1st. Even if you're at the "top of the list," you may not get the organ. Perhaps you have a complication that would preclude getting a transplant for a few days or weeks. Maybe in reviewing the lab work or donor history the transplant team has cause to defer the offer. Perhaps, if you're highly sensitized, the initial crossmatch is OK but the final crossmatch comes back bad. There are lots of scenarios. Any refusals and the explanations would be submitted to UNOS. Organs other than kidneys are most often transplanted into one of the first 10 candidates identified on the match run. For kidneys that rate is much lower, particularly because of highly sensitized patients with adverse crossmatches. With specific, written permission from the patient and from the listing center, UNOS can provide the basic information on patient listing (date of entry, current medical status, etc.). But I'd *beg* you to call the center first on this if you have any questions! And again, for all the reasons above, this would be meaningless as an expression of your "rank" for a transplant. For more detail: http://www.med.umich.edu:80/trans/transweb/faq/faq_pos_list.html *Where is the best transplant center? We (UNOS) maintain(s) data on center-specific graft and patient survival. The current report covers all transplants occurring between 10/1/87 and 12/31/91. You can request data free on up to 10 transplant programs; after that we recommend you purchase either the set of data or the specific volume you need. I believe the entire report is also available via ftp on some obscure HCFA site; even I don't know the address. (I'd warn you, though -- it's a huge report.) That report will tell you quite a bit, but there's a lot it can't. There are some risk factors we're unable to quantify at this point but might affect outcome. There is also pure chance, which we can never completely eliminate. For example, a recipient with a perfectly functioning transplant who gets run over by a truck is still counted as a death, graft-related or not. The numbers can never tell you the whole story, either. I think any surgeon or physician would tell you that the patient's outlook and attitude have a great effect on outcome. If you really like (or really hate) the care you're getting, the numbers have less meaning. I'd advise you to look at the numbers, get some recommendations from people in similar need, and then talk to the people at the program(s). ========================================================================== IV. The organ donor shortage ========================================================================== UNOS statistics reveal that in 1993, on average, 8 people a day died in the US while on the waiting list. As organ transplantation has passed out of the experimental stage, the number of people with end stage diseases seeking a transplant has slowly but steadily increased. The number of donations however, has not increased. Sadly, this is not because there are not more potential donors. Various estimates are that anywhere from 60 to 70% of potential donations are either refused by the next-of-kin or are never requested. These estimates take into account the criteria for brain-dead, heart-beating donors and other contraindications. Roughly half of the missed donations appear to result from failure of physicians to either declare brain death in a timely manner, or their failure to notify their Organ Procurement Organization of potential donors. This is despite enactment in all 50 states of "required request" legislation that mandates that all potential donations be sought. Apparently, there is no enforcement of these laws. There are a variety of proposals to increase the number of donations. For example: public and professional education, giving people who have registered their support for donation additional points on the waiting list should they ever need a transplant themselves (preferred status), changing the structure of donation from a required opting-in to a required opting-out strategy (presumed consent), and requiring all adults to register their choice of whether they would permit donation in the event of their death (mandated choice or required response). There are also, on occasion, issues raised in the media that might be of interest to medical ethicists, but which would have little to no positive impact on the number of organs available for transplantation. Organ donation from anencephalic infants and executed convicts, for example, are issues that could possibly distract attention from the more important issue of obtaining wide spread support for donation. In the 1994 September 14th issue of JAMA, the AMA has finally (after nearly a year of delay after the policy's adoption) made public its recommendation that states enact into law a mandated choice policy. The length of time it has taken to make this policy public indicates the medical community's inability to appreciate that this is a crisis situation for those patients on the waiting list whose lives could potentially be saved. It also indicates that there are individuals who do recognize the seriousness of the situation and are working to move their colleagues toward a feasible solution. References: Siminoff LA, Arnold RM, Caplan AL, Virnig BA, Seltzer DL Public Policy Governing Organ and Tissue Procurement in the United States, Results from the National Organ and Tissue Procurement Study Ann. Intern. Med. 1995 July 1;123:10-17 Note: Some of the conclusions in this study are at odds with those of studies conducted by The Partnership for Organ Donation. Council on Ethical and Judicial Affairs, American Medical Association Strategies for Cadaveric Organ Procurement. JAMA 1994 Sept.14;272(10):809-12 Murray TH, Youngner SJ Organ Salvage Policies, A Need for Better Data and More Insightful Ethics. (editorial) JAMA 1994 Sept.14;272(10):814-5 Wolf JS The role of the United Network for Organ Sharing and designated organ procurement organizations in organ retrieval for transplantation. Arch Pathol Lab Med 1991 Mar;115(3):246-9 Prottas J Batten HL Health professionals and hospital administrators in organ procurement: attitudes, reservations, and their resolutions. Am J Public Health 1988 Jun;78(6):642-5 Annas GJ The paradoxes of organ transplantation [editorial] Am J Public Health 1988 Jun;78(6):621-2 Evans RW Orians CE Ascher NL The potential supply of organ donors. An assessment of the efficacy of organ procurement efforts in the United States. JAMA 1992 Jan 8;267(2):239-46 Spital A Mandated choice. The preferred solution to the organ shortage? Arch Intern Med 1992 Dec;152(12):2421-4 Mandated Choice for Organ Donation: Time To Give It a Try MD Annals of Internal Medicine, 1 July 1996. 125:66-69. http://www.acponline.org/journals/annals/01jul96/inbalan1.htm Gnant, M.R.X., et al., The impact of the presumed consent law and a decentralized organ procurement system on organ donation: quadruplication in the number of organ donors. (1991) Transplantation Proceedings, 23(5):2685-2686. Michielson, P. Organ shortage-What to do? [Presumed consent in Belgium] (1992) Transplantation Proceedings, 24(6):2391-2392. Kott, Andrea., Organ Procurement Programs in State of Emergency. Medical World News Feb 1992, v33n2, p. 15-16 Lee, P.P., Kissner, P., Organ donation and the Uniform Anatomical Gift Act. (1986) Surgery 100:867-875. "Solving the Organ Donor Shortage", The Partnership for Organ Donation, Inc. (617)482-5746. UNOS Ethics Committee Reports on alternatives for organ donation: "Financial Incentives for Organ Donation" "Preferred Status for Organ Donors" "An Evaluation of the Ethics of Presumed Consent and a Proposal Based on Required Response" - available from UNOS (804)330-8500 - also available through the Yale biomedical gopher (see section II) Gallup Poll on Attitudes Towards Organ Donation, available in the Yale biomedical gopher and Transweb (see section II), and from The Partnership for Organ Donation, Inc. (617)482-5746. National Donor Sabbath web site -------------------------------- This site contains a wealth of information regarding the positions of many Judeo-Christian religious organizations toward organ donation. Organizations' recent position statements, and suggestions to clergy for participating in National Donor Sabbath Day, or presented. From Douglas Y. Sur - doug.sur@bigfoot.com: National Sabbath Day is coming and has been constructed to help religous organizations help the transplant community. For those interested in National Donor Sabbath Day, please contact Jennifer Grant at 301-443-7577. I tried putting up some information regarding the subject at http://www.transplantawareness.org/sabbath/CONTENTS.html ========================================================================== V. Transplant and organ donation myths ========================================================================== As with any new technology, rumors, myths and misunderstandings about organ transplantation are widespread. Frustration produced by the high cost, the effect of the organ donor shortage, and the unavailability of transplantation throughout most of the rest of the world have probably contributed to this. Since rumors can often be more entertaining than the truth, tabloid media will often pick up and help spread them, despite the great harm they cause. Urban legends about organ transplantation are uniquely dangerous since organ transplantation can not succeed without the participation and support of the majority of the population. Bad press, urban legends, even fiction portraying organ transplantation as somehow evil, all have prevented full support for donation and led to the death of people who might otherwise be leading productive and happy lives now. Another factor fueling the proliferation of myths is the unfortunate institution in India of payment for unrelated live kidney donation that preys on the poor in that country. While it may be true that the Indian medical community is not required to abide by western standards of ethics, neither is the US medical community required to interact with them, train their physicians, publish their research, etc. Its past time that the US medical community started taking visible responsibility for influencing transplantation ethics in foreign countries. Mani, M.K., Renal Transplantation in India. (1992) Transplantation Proceedings, 24:1828-9. Kott, Andrea., Organ Procurement Programs in State of Emergency. Medical World News Feb 1992, v33n2, p. 15-16 Gallup Poll on Attitudes Towards Organ Donation, available at http://www.med.umich.edu:80/trans/transweb/gallup_survey/gallup_index.html and from The Partnership for Organ Donation, Inc. (617)482-5746. UNOS web site's Top Ten Myths About Donation http://www.unos.org/Newsroom/Frame_news.asp?SubCat=myth The "rising from brain death" myth ---------------------------------- One of the requirements for solid organ donation from cadavers is that blood remain circulating for a number of hours. This requires a patient that has been declared brain dead, total loss of brain stem function, but whose heart can be kept beating. Unfortunately, the media, and even, apparently, some medical professionals, are in the habit of using the term "brain dead" to describe other conditions that are properly referred to as vegetative state and coma. A patient can recover, to one degree or another, from a vegetative state or a coma. As a result, when next of kin are approached with a request for organ donation after being told that the patient is brain dead they often mistakenly believe that the patient might recover and insist on waiting till the heart has stopped beating and the patient is no longer a candidate for donation. Myths are widely circulated of patients declared brain dead who recover just as they are about to be used for organ donation. This has never happened. Inaccurate use of terms has probably contributed to myths of resurrection from brain death, but the linkage to organ donation is simply malicious. An extremely informative article about the confusion surrounding brain death is at http://www.pitt.edu/~cep/41-3.html. It's extremely important that everyone concerned about organ donation understands this issue. Medical professionals themselves are guilty of perpetuating misunderstandings and myths about brain death and organ procurement. This may be the single most significant factor working against organ donation. The Partnership for Organ Donation (see section II and Part 2, section II), a nonprofit organization active in altering the way donation requests are made, is urging professionals to avoid the use of the term "brain death" when discussing the declaration of death with the family since its unrealistic to expect that the term can be explained to them, and misinformation corrected, while they are grieving. Freeman JW Confusion and misunderstanding of some of the terms and practices readily employed in medicine [editorial] S D J Med 1991 May;44(5):123 Pallis C ABC of brain stem death. The position in the USA and elsewhere. Br Med J (Clin Res Ed) 1983 Jan 15;286(6360):209-10 Young B Blume W Lynch A Brain death and the persistent vegetative state: similarities and contrasts. Can J Neurol Sci 1989 Nov;16(4):388-93 Oboler SK Brain death and persistent vegetative states. Clin Geriatr Med 1986 Aug;2(3):547-76 Let's Abolish "Brain-Death", Community Ethics / Volume 4, Number 1, http://www.pitt.edu/~cep/41-3.html The black market myth: ---------------------- In all the time that the rumors of a black market, kidnapping and murder of children, organ-swiping, and other atrocities have been circulating (since at least 1982 when cyclosporin began to be widely used), there has never been any evidence to substantiate any of them. Any rumor regarding a black market in organs, or organ piracy, needs to be evaluated in light of the necessity of matching the organ and recipient in order to avoid rejection by the recipient's immune system. One can not take any old organ and just put it anywhere you please. A rather complex system has been set up in the US to handle matching and distribution. Its unlikely that any number of evil people in the US or abroad will be able to duplicate such a system in secret. Adding these simple facts with the necessity of having many highly skilled medical professionals involved, along with modern medical facilities and support, makes it plain why rumors of the involvement of murder, violence and organized crime in organ procurement can not be given any credence. These stories have done great damage to the public's appreciation of the need for organ donation. Within the last several years, human rights organizations have started to pick up and spread black market myths. They seem to have confused unethical practices abroad which have been known and protested for years (India's payment system for live kidney donation and China's use of organs from executed convicts) with implausible stories of secret organ swiping mafias. Their reliance on ill-informed sources of information has damaged appreciation for real human rights and ethics problems related to transplantation in Asia and developing countries. For reference see: "THE CHILD ORGAN TRAFFICKING RUMOR: A MODERN `URBAN LEGEND'" A REPORT SUBMITTED TO THE UNITED NATIONS SPECIAL RAPPORTEUR ON THE SALE OF CHILDREN, CHILD PROSTITUTION, AND CHILD PORNOGRAPHY BY THE UNITED STATES INFORMATION AGENCY, by Todd Leventhal, USIA Senior Policy Officer, http://www.usia.gov/topical/global/baby.htm Debunking the Kidney Heist Hoax http://www.unos.org/Newsroom/archive_statement_022197.htm The New Orleans Police Department has put their Official Statement online at http://www.mardigrasday.com/police1.html regarding the persistant urban legend of kidney snatching. The Latin American baby snatching myth -------------------------------------- These myths have been traced back to at least 1986 when Pravda in the Soviet Union carried allegations of children being taken to the US for adoption and then being murdered for their organs. There are several variations and they've become quite popular in countries where the civil unrest they foster tends to favor one political or military faction. As described above, all of them require an ignorance of what's involved in transplantation. No evidence is ever produced, just the assertion that its being investigated. Within the last few years some individuals concerned about human rights violations in Latin-America have become infatuated with these rumors, apparently because one Central-American government official or another had told them that they were true, though again no evidence is produced. This is very unfortunate since Amnesty International has started to quote some of the more irresponsible writings on the subject. Further information is available from Todd Leventhal at the US Information Agency. E-mail: tleventh@usia.gov Phone: (202)619-5673. Fax: (202)205-0655. They've been following the body parts rumors for seven years. References and additional information: Too Good to Check, Anti-Americanism: A rise in suspect reports that children are being abducted or their organs. Newsweek, June 26, 1995, pg. 33. (The international issue had a longer article on the same subject http://www.concentric.net/~Holloway/toogood.txt) Leventhal, THE "BABY PARTS" MYTH: THE ANATOMY OF A RUMOR. UNOS Update, May 1994 (also available from Todd Leventhal tleventh@usia.gov) gopher://info.med.yale.edu/00/Disciplines/Disease/Transplant/Myths/myths.txt http://www.usis.usemb.se/topics/bp-unrep.txt Leventhal, Critique of French film "Organ Snatchers" http://www.urbanlegends.com/medical/organ.theft/ body_snatchers_film_debunking.html UNOS Fights 'Baby Parts' Rumor in Geneva. UNOS Update, May 1994 Organ Trafficing perspective from UNOS, UNOS press release available from UNOS and also posted at the Yale biomedical gopher site. gopher://info.med.yale.edu/00/Disciplines/Disease/Transplant/Myths/theftmyt.txt Foreigners Attacked in Guatemala. New York Times, 4/5/94, pg. A10. Holden, Constance. Curbing Soviet Disinformation. Science, Nov 4, 1988, v242, p. 665. The racism myth: ---------------- The chance of getting a good organ or tissue match is more likely within an ethnic group. Since minorities in the US have traditionally been less likely to participate in organ and tissue donation, the chances of a patient from one of these groups finding a match is decreased. The urban legend, of course, is that organ distribution discriminates by race and, therefore, donation should be refused since it will punish the oppressors. The tragic reality is that the people they are hurting the most by doing this are the people within their own ethnic group. References: Kallich JD. Wyant T. Krushat M., The effect of DR antigens, race, sex, and peak PRA on estimated median waiting time for a first cadaver kidney transplant. Clinical Transplants. :311-8, 1990. Pike RE. Kahn D. Jacobson JE., Demographic factors influencing consent for cadaver organ donation. South African Medical Journal. 79(5):264-7, 1991 Mar 2. Arnason WB., Thomas Jefferson Memorial Church, Unitarian Universalist, Charlottesville, Va. Directed donation. The relevance of race. Hastings Center Report. 21(6):13-9, 1991 Nov-Dec. Plawecki HM. Plawecki JA., Improving organ donation rates in the black community. Journal of Holistic Nursing. 10(1):34-46, 1992 Mar. Mozes, Hayes, Tang Impediments to Successful Organ Procurement in the "Required Request" Era: An Urban Center Experience Transplantation Proceedings 1991 October; 23(5):2545 The preferential treatment on the US waiting list myth ------------------------------------------------------ Since patients are not listed by name in the regional and national lists, its hard to imagine how this is supposed to take place. It is likely that people taken in by this myth are having a hard time distinguishing preferential treatment on the list (which doesn't exist) with the problems of simple access to health care in general. This is a problem with the entire US health care system and has nothing to do with how patients are treated once they are on the transplant waiting list. ========================================================================== VI. Organ donor awareness postage stamp campaign and other awareness materials ========================================================================== After nearly two decades of work by many individuals the Postal Service has finally seen fit to issue a stamp to raise donor awareness. http://www.usps.gov/news/stamps/98/98084stp.htm From e-mail to TRNSPLNT from Debi Surlas 7 Aug 1998 The New Donor Awareness postage stamp went on sale nationally on August 6th. But, unfortunately, this stamp is not being automatically sent to all post offices. Unlike most special issue stamps (like the Breast Cancer Awareness and even the Alfred Hitchcock stamps), this one has to be specifically ordered by all but a few post offices. So, if yours does not have the new stamp, ask them to order a supply, and encourage everyone you know to use the stamp while it is available. It is available in the newer self-adhesive form. Sources of the "Don't take your organs to heaven. Heaven knows we need them here" bumper stickers and other materials: ----------------------------------------------------------------------- The Aurora Group in Arkansas: 501-2-CHANCE. The New York Regional Transplant Organization: 212-870-2240 and 212-861-7370 UNOS http://www.unos.org (see Part 2). Transplant Awareness Inc. http://www.transplantawareness.org/ Organ Donor Awareness Apparel ----------------------------- Hats, shirts, and jackets with donation slogans PO Box 18812 Tucson, AZ 85731 Phone: (520) 574-8358 http://www.i-netmall.com/shops/organdonor Transplant tee-shirts Hanging By a Thread 391 E. Las Colinas Blvd. Suite 130-456 Irving, Texas 75039 http://www.hangingbyathread.com/page2.html Email at lcross@hangingbyathread.com