http://medweb.uni-muenster.de/misc/other/transplant-faq (Einblicke ins Internet, 10/1995)Path: bloom-beacon.mit.edu!hookup!swrinde!gatech!newsxfer.itd.umich.edu!zip.eecs.umich.edu!panix!cmcl2!newsserv.cs.sunysb.edu!ysics.physics.sunysb.edu!mhollowa From: mhollowa@epo.som.sunysb.edu (Michael Holloway) Newsgroups: bit.listserv.transplant,sci.med,sci.bio,sci.answers,news.answers Subject: bit.listserv.transplant FAQ, Organ transplantation newsgroup (Part 1 of 2) Followup-To: bit.listserv.transplant Date: 20 May 1994 20:57:45 GMT Organization: Institute For Theoretical Physics Lines: 1067 Approved: news-answers-request@MIT.Edu Distribution: world Expires: 06/19/94 Message-ID:Reply-To: mhollowa@epo.som.sunysb.edu (Michael Holloway) NNTP-Posting-Host: csws3.ic.sunysb.edu Summary: This is a description of the bit.listserv.transplant newsgroup and its parent mail list, TRNSPLNT. Frequently asked questions regarding organ transplantation are addressed. A list of resources for transplantation patients is provided. Originator: mhollowa@csws3.ic.sunysb.edu Xref: bloom-beacon.mit.edu bit.listserv.transplant:1034 sci.med:42480 sci.bio:10720 sci.answers:1165 news.answers:19775 Posted-By: auto-faq 2.4 Archive-name: medicine/transplant-faq/part1 5/19/94 Modifications since 3/31/94: Added information on bone marrow donation and the (800)MARROW-2 number of the National Bone Marrow Registry. (section XI) Added sections on brain death and Latin American baby snatching myth to section V. Added Partnership for Organ Donation to section VII. Added UNOS's self-introduction to section VII. Added Jack Batterson's information of the 800 number for Prograf (FK506) reimbursement to Part 2. Contents Part 1: I. The TRNSPLNT mail list II. Organ and tissue transplant info via gopher III. Organ donation, 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 VII. Sources of information on organ and tissue donation and transplantation VIII. Transplant fund raising (BMT Newsletter) IX. Live kidney donor information X. Renal transplant specific sources and information XI. Blood marrow transplant specific sources Bone marrow donation info Part 2: National Transplant Patient Resources Directory About this FAQ -------------- This FAQ is archived at rtfm.mit.edu and available by gopher or ftp under usenet/bit.listserv.transplant. 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, and Joel Newman of UNOS. Part 2, the National Transplant Patient Resources Directory, lists information on organizations providing support (financial and otherwise) to transplant patients. It is taken largely from a pamphlet published by Stadtlander Pharmacy and The Transplant Foundation, a copy of which can be found on Yale biomedical gopher site. Mike Holloway mhollowa@epo.som.sunysb.edu ========================================================================= I. Description of the TRNSPLNT mail list and bit.listserv.transplant ========================================================================= 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. This also provides a way to see who's listening since a list of subscribers and their addresses can be accessed through the listserv. 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. 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. Below is the introduction to TRNSPLNT written by Dan Flasar. Since Dan started the group early in `93 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 or LISTSERV@WUVMD.BITNET 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.BITNET (or LISTSERV@WUVMD.WUSTL.EDU). To subscribe, send the following command to LISTSERV@WUVMD.WUSTL.EDU or LISTSERV@WUVMD.BITNET 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 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! ========================================================================= II. Organ and tissue transplant info via gopher ========================================================================= The Yale biomedical gopher is accepting information related to transplantation for presentation at their gopher site. As of this writing, issues of UNOS Update, UNOS ethics committee and statistics reports, Stadtlanders list of support groups for transplant patients and excerpts of the National Kidney Foundation newsletters are available. Point your gopher at: Hostname: yaleinfo.yale.edu Port: 7000 The "Organ and tissue transplant information" submenu is under "Biomedical disciplines and specific diseases/diseases and disorders". Any organization that has information, newsletters, or papers that they would like posted are invited to send an ASCII file to Susan Grajek at Yale, email: grajekse@medpo1.med.yale.edu, phone: 203-785-5181. Other file types can be accommodated but please check with Ms. Grajek ahead of time. If you need help with e-mail or preparation of the file, please contact Michael Holloway at mhollowa@epo.som.sunysb.edu, phone: 516-444-3090. Most word processors have a simple command for making an ASCII, or plain text, file from anything created in that program. ========================================================================= III. Organ donation, 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 week of April 18th to the 24th has been proclaimed National Organ and Tissue Donor Awareness Week by the US Congress. 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. ========================================================================== IV. The organ donor shortage ========================================================================== UNOS statistics reveal that in 1992, on average, 7 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 80% 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, and changing the structure of donation from a required opting-in to a required opting-out strategy. These and others have all met with resistance from sectors of the medical community, public and government that don't seem to realize that the present system, and the people trapped in it, are in a crisis situation. References: 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 "Solving the Organ Donor Shortage", The Partnership for Organ Donation, Inc. (617)330-8650. 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, yaleinfo.yale.edu port 7000 ========================================================================== V. Transplant and organ donation myths ========================================================================== As with any new technology, rumors, myths and misunderstandings about organ transplantation are wide spread. 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. 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. The Partnership for Organ Donation (see section VII), a volunteer 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're in a grieving process. Freeman JW Confusion and misunderstanding of some of the terms and practices readily employ 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 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), 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. 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 two 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 their 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: Leventhal, THE "BABY PARTS" MYTH: THE ANATOMY OF A RUMOR. (available from Todd Leventhal tleventh@usia.gov and the Yale biomedical gopher after 6/1/94) Pierce, Burdick face accusers in baby parts allegations, UNOS Update, June 1993 (available at the Yale biomedical gopher) UNOS Update, April/May 1994 (available from UNOS, see below) Organ Trafficing perspective from UNOS, UNOS press release available from UNOS and soon to be posted at the Yale biomedical gopher site. Foreigners Attacked in Guatemala. New York Times, 4/5/94, pg. A10. 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 ========================================================================== A petition is being circulated for a postage stamp to promote organ donor awareness. A similar stamp promoting blood donation had a large impact on increasing blood donation. Copies of the petition are available from the address below but any sheet of paper with names and addresses will do. The following appears at the head of the petition sheet: ------------------------------------------------------------------------- December 31, 1993 Revision No. 11 225,859 signatures secured Ed Heyn, Chairman of Organ Transplants of Southwestern Michigan Support Group, has begun a campaign to create a United States postage stamp to promote organ donor awareness. Eds's group must receive a positive recommendation from the Citizen's Stamp Advisory Committee before they go to the Postmaster General. Please sign this support signature sheet and pass it around. Upon completion please return it to the address on the bottom of this sheet. This stamp will encourage donor awareness, donor awareness saves lives. Please return to Ed Heyn, 8637 Ruggles Rd. Baroda, MI 49101 -------------------------------------------------------------------------- Sources of the "Don't take your organs to heaven. Heaven knows we need them here" bumper sticker 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 (see below). ========================================================================== VII. Sources of information on organ donation and transplantation ========================================================================== UNOS ---- From UNOS quick info sheet: ------------------------------------------------ The United Network of Organ Sharing, located in Richmond, Virginia, administers the national Organ Procurement and Transplantation Network (OPTN) and the U.S. Scientific Registry for Organ Transplantation under contracts with the US Department of Health and Human Services. UNOS is 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. UNOS members include every transplant program, organ procurement organization and tissue typing laboratory in the United States. Policies governing the transplant community are developed by the UNOS membership through a series of regional meetings, deliberations at the national committee level and final approval by a 32 member board of directors, equally represented by physicians and nonphysicians. UNOS has formulated policies to ensure equitable organ allocation to patients registered on the national waiting list. These policies forbid favoritism based upon political influence, race, sex of financial status; they rely, instead, upon medical and scientific criteria. ------------------------------------------------ "UNOS Update" June '93, July/August `93 and Sept/Oct `93 issues, the UNOS Ethics Committee whitepaper reports on alternative organ donation and tables of recent UNOS statistics on organ transplantation, are available through the Yale biomedical gopher (see above). The UNOS 800 number for organ donation information, pamphlets, organ donor cards, bumper stickers, etc., is: 1-800-24-donor. To request transplantation statistics, UNOS Update, or ethics committee reports call (804) 330-8500. UNOS Update gratis subscription requests can also be made by writing to Esther Benenson, Managing Editor, UNOS Update, P.O. Box 13770, Richmond, VA 23225-8770. A list of educational material is also available. Some of these require a fee. You can also send a request for information or donor education materials to newmanjd@comm5.unos.org. TRIO ---- The Transplant Recipients International Organization is a network of local support groups that meet for the benefit of members and to promote organ donor awareness. Their national headquarters can put you in touch with your local chapter: (412) 687-2210. They also have pamphlets and organ donor cards available. The Partnership for Organ Donation, Inc. ---------------------------------------- From "Solving the Organ Donor Shortage": "The Partnership for Organ Donation, Inc. is an independent nonprofit organization dedicated to solving the desparate shortage of organs available for transplantation in the United States. "The Partnership believes the gap between eligible and actual donors can be closed, and donation substantially increased, by implementing an organized, proactive, and systematic program which focuses on three key audiences: health car professionals, organ procurement organizations, and the American public." "Solving the Organ Donor Shortage" is a very concise and detailed description of the shortage, the problems contributing to it, and how the Partnership believes it can be combatted, complete with bibliography. A copy can be obtained from: The Partnership for Organ Donation 100 Oliver St. International Place Boston, Massachuetts 02110 telephone:(617)330-8650. fax:(617)330-8651 Long distance love ------------------ The Sept/Oct `93 issue of UNOS Update carried a story about a pen-pal support network for transplant recipients. The address is: Long Distance Love, P.O. Box 2301, Ventnor, NJ 08406. A $6 donation is requested. Encore: Another Chance at Life ------------------------------ A slick magazine published by Chronimed Pharmacy "exclusively for organ transplant patients, their families and friends." Apparently published 4 times a year. "This publication provides a broad look at many issues surrounding organ transplantation and encourages personal stories and feedback from readers." For a gratis subscription write to: Chronimed Publishing, P.O. 46181, Minneapolis, MN, 55446-9920 Local transplant centers and OPOs --------------------------------- Local Organ Procurement Organizations (OPOs) often have education and promotion activities. A local transplantation center will be able to give you information on this. ============================================================================ VIII. Transplant fundraising (BMT Newsletter) ============================================================================ (see also the National Transplant Patient Resources Directory, part 2 of the FAQ) The following is from the BMT Newsletter, November 1993, and reproduced by Kimberly.A.Montgomery.1@ND.EDU with the publisher's permission. Copyright 1993 BMT Newsletter 1985 Spruce Ave. Highland Park, Illinois 60035 708-831-1913 The information is applicable to any kind of transplant fundraising. Two other excellent articles from the BMT Newsletter on organizing fundraising and support are available in the TRNSPLNT archive and at the Yale biomedical gopher (see above). Agencies Provide Fundraising Help --------------------------------- What do you do when you need to raise $10,000 for a bone narrow transplant, but have no fundraising experience? Some BMT patients have turned to groups such as the Organ Transplant Fund in Memphis TN or the Children's Organ Transplant Association in Bloomington IN for help. The Organ Transplant Fund (OTF) was founded in 1983 to raise funds for organ transplant recipients. Since its inception, the group has orchestrated more than 500 successful fundraising campaigns including 100 for bone narrow transplant patients. On average, $200,000 is raised per patient, says national director Suzanne Norman. Initially, a staff person from Organ Transplant Fund meets with the family to identify a fundraising chairperson, and to set up a committee of local volunteers. "We then meet with the volunteers, help them develop a fundraising plan, and show them how to tap into resources in their community quickly and effectively. We provide them with a fundraising packet and ideas for events, as well as access to low-cost products they might want to sell to raise funds such as cookbooks, candy bars, etc." Funds raised through OTF are used solely to pay transplant-related expenses. OTF controls the funds and administers payments directly to the health care provider. In the event of death, funds remain in the patient's account for up to one year to pay transplant-related bills. Thereafter, the funds are transferred to a general account that provides emergency grants and support services for future patients. "Since contributions to the Organ Transplant Fund are tax-deductible. working with us expands the universe of potential contributors," says Norman. "Large corporations, for example, will simply not make a contribution to an individual but they will contribute to a tax-exempt organization." Fundraising guidance is not the only help Organ Transplant Fund provides. '"We offer our families a multitude of support services such as arranging for lodging and transportation to the transplant center, identifying BMT centers that do transplants for their particular disease, negotiating a reduced down payment at the BMT center so the transplant can begin quickly, etc." says Norman. Organ Transplant Fund retains 5 percent of the funds raised to cover administrative costs. "Many patients have told us that our support services, alone, are worth the price," says Norman. The Children's Organ Transplant Association (COTA) also provides fundraising assistance to organ transplant patients, both children and adults. Founded in 1985, the group has conducted more than 150 fundraising campaigns on behalf of organ transplant patients, approximately half of which have been for bone marrow transplant patients, according to COTA executive director David Cain. "The amount of money varies according to the number of volunteers working on the fundraising campaign and the size of the community." says Cain. "Typically, $75,000-$100,000 can be raised in a period of 60-90 days." Like OTF, COTA asks families to identify a network of volunteers who will orchestrate fundraising activities in the community. "We provide them with a fundraising kit, ideas for events, and help with publicity," says Cain. "Depending on the amount of money to be raised, COTA staff may meet with the family or simply provide guidance over the phone." All contributions are deposited in a tax-exempt COTA fund and are used strictly to pay medical expenses. "It's important that the public have confidence that their contributions will be used only for necessary medical expenses," says Cain. "Having the funds controlled directly by COTA rather than the family provides that assurance." COTA's administrative expenses are covered by the interest earned on the accounts into which funds raised for patients are deposited. All funds are invested in government securities, says Cain. "Our goal is not only to raise funds for transplant patients, but to get the community educated and involved in the process," says Cain. "Our emphasis is on having friends and neighbors help each other." To contact the Organ Transplant Fund, phone 800-489-FUND. To contact the Children's Organ Transplant Association, phone 800-366-2682. Life-Core (Oregon), 503-366-9125, also provides fundraising assistance. ============================================================================ IX. Live kidney donor information ============================================================================ The following is a summary of "Donating a kidney to a family member- How primary care physicians can help prepare potential donors" Authors: Michael L. O'Dell, MD Kristi J. O'Dell, ACSW Thomas T. Crouch, MD VOL 89/NO 3/February 15, 1991/Postgraduate Medicine . Kidney Donation Summarized by Katherine Eberle, eberle@gdls.com for the TRNSPLNT FAQ Jan 1994. Preview When a relative needs a kidney to survive, family members often impulsively offer to donate one without stopping to consider the physical, emotional, and financial ramifications, which can be considerable. The family's primary care physician can be very helpful in guiding and educating potential donors and, by arranging for screening to be done in the community, can ease the financial strain. The authors discuss the things a potential kidney donor should consider. The desirability of transplantation is increasing and the supply of cadaveric kidneys falls far short of the demand. So searching for a possible living related donor is becoming more and more common. Much of the preliminary testing required to identify a donor can be easily performed in the potential donor's community, under the direction of the primary care physician in communication with the transplant team. Additionally, the donor's care is aided when the evaluating physician serves as an advocate. Evaluation for Immunologic Match Usually, the first test performed is determination of ABO blood type compatibility. Many physicians follow ABO compatibility testing with HLA typing. Tests required by most centers and a description of results that may prohibit transplantation: TESTS Potential Disqualifying Factor History and Physical Age under 18 or over 55 yr Examination Obesity Hypertension Systemic disorder with potential to impair health Psychiatric disorder Deep vein thrombosis Family history of polycystic kidney disease, diabetes in both parents, hereditary nephritis, systemic lupus erythematosus Laboratory Studies Blood typing Poor match with recipient Complete blood cell count Anemia or blood dyscrasia Automated biochemical Abnormalities indicating analysis significant disease state Screening for diabetes Evidence of diabetes Serologic tests for syphilis Evidence of current infection Hepatitis B surface antigen, Evidence of current antibodies, core antigen infection Human immunodeficiency virus Evidence of current testing infection 24-hr urine collection for Creatinine Diminished clearance Protein Significant proteinuria Calcium Hypercalciuria Oxalate Hyperoxaluria Urate Hyperuricemia Urine osmolality after Inability to concentrate to overnight thirst >700 mOsm/L Urinalysis Unexplained hematuria and/or other abnormality (eg, proteinuria) Urine culture Evidence of urinary tract infection Pregnancy test (where Positive for pregnancy applicable) HLA typing Poor immunologic match with recipient Radiographic Studies Chest x-ray film Evidence of significant disease Intravenous urography Anatomic abnormality Renal arteriography Anatomic abnormality Other Studies other significant abnormality Tuberculin and Candida skin Evidence of active tests tuberculosis or anergy Multiple gated acquisition Evidence of ischemic heart stress test (in men over age disease 45 yr and women over 50 yr) Pulmonary function testing Significant abnormality in (in smokers) lung function If the potential recipient is a reasonable match, renal angiography is performed to determine which of the donor's kidneys is the more accessible and the better anatomic match and to screen for abnormalities that might preclude uninephrectomy. In general, the left kidney, with its longer renal vein, is selected. Potential donors should also be screened for psychosocial risk factors. An evaluation of the stability of the individual and the family and the financial impact of donation should be undertaken. This is often performed by social workers. An important consideration is psychosocial evaluation is whether the potential donor is being coerced into the donation. Purchase of a kidney is illegal in the United States. Occasionally, evaluators discover potential donors who are unwilling to donate and yet are being significantly pressured to do so by family members. Such persons should be skillfully assisted in resisting such coercion, perhaps by honestly describing them as "not an appropriate match." Potential Disqualifying Psychosocial Factors in Kidney Donor: Evidence of significant coercion to donate Evidence that donation would cause extreme financial hardship Evidence that spouse is strongly opposed to donation Evidence of significant psychiatric disturbance Often, family members spontaneously decide to donate a kidney before they have had an opportunity to consult medical personnel. They make their decision on moral rather than technical grounds, often describing it as "the right thing to do" or their "calling." Effects on the Donor PHYSICAL EFFECTS - The actual risks to the donor from uninephrectomy may be divided into short- and long-term. Short-term risks are those typically seen with this major surgical procedure (ie, pulmonary embolus, severe infection or sepsis, renal failure, hepatitis, myocardial infarction, splenic laceration, pneumothorax). Estimates of the mortality rate are generally less than 0.1% and of significant complications less than 5%. Less than 1% of donors have any permanent disability. Long term risks are controversial and largely unknown. In one third of all donors, nonprogressive proteinuria develops. This finding has led to a recommendation that donors restrict their protein intake after uninephrectomy. In addition, donors experience a slight rise in the serum creatinine level, which is also nonprogressive. PSYCHOSOCIAL EFFECTS - These risks to potential and actual donors may also be short- or long-term. Potential donors who choose not to donate may experience guilt about their decision or be ostracized by the family, although detailed studies of potential donors who choose not to donate are few. About one fourth of those who choose to donate experience moderate to severe financial difficulties. Even though the cost of the evaluation and procedure is borne by the federal End Stage Renal Disease Program, unreimbursed financial losses resulting from job absence and travel can be significant. Most authorities cite a return to work 4 weeks after uncomplicated uninephrectomy. Some centers use donor- specific blood transfusions as a means of enhancing graft survival. This requires blood donation from the potential donor several days before the actual procedure, which may extend the time away from home and work. Troubled marriages may fail when the added stress of a kidney donation is introduced. According to one study, one third of the couples whose marriage failed cited the kidney donation as a major factor in the failure. Although much attention may be lavished on the donor in the perioperative period, it may be short-lived and tends to quickly refocus on the recipient. The recipient may, paradoxically, criticize the donor's decision or become distant or angry toward the donor. However, the increase in self-esteem gained from the altruistic action of donating a kidney may counterbalance such losses. Donation of a kidney has provided many donors with a sense of deep satisfaction. In view of the potential risks to donors, some centers refuse to perform transplantation from a living related donor. With effective immunosuppressive therapy, cadaveric transplantation is quite successful, and these centers argue that the benefit to the recipient is not greatly enhanced by transplantation from a living related donor. However, cadaveric organs are scarce. In contrast, proponents of transplantation from a living related donor argue that thwarting legitimate altruistic behavior by denying the procedure is paternalistic, particularly since enhanced graft survival is noted in such recipients compared with recipients of a cadaveric transplant. Conclusion Although the use of living related donors will remain controversial, everyone involved should be struck by the courage of those willing to donate a kidney to a relative. For physicians providing care to these families, an exceptional opportunity for guidance exists. ============================================================================ X. Renal transplant specific sources and information ============================================================================ (see also the National Transplant Patient Resources Directory, part 2 of the FAQ) contributed by Alex Bost, alex@unx.sas.com *** Periodicals (Magazines) Available to Renal Patients: RenaLife Semi-Annual Publication Publisher: American Association of Kidney Patients Cost: Free with Membership Contact: See AAKP in "Associations" Section For Patients Only Bimonthly Publication Publisher: Contemporary Dialysis, Inc. Cost: $17/year; $27/two years; Canada, $22/year; Foreign, $32/year Contact: For Patients Only 6300 Variel Ave. Suite I. Woodland Hills, CA 91367. *** Do I need a Hepatitis B Vaccine? Hepatitis B is a serious viral disease that attacks the liver. It is highly contagious and is potentially fatal. While there is no cure for the dangerous Hepatitis B, there is a vaccine available. Immunization is recommended for persons of all ages, especially those who are in a high-risk category: healthcare workers; abusers of injectable drugs, sexually active individuals (including heterosexuals with more than one partner in a six month period; homosexuals; bisexuals), patients on dialysis or those receiving frequent blood transfusions, and patients waiting for organ transplantation. If you fit into any of these categories, you should ask your physician about the Hepatitis Vaccine. *** Should I get a Flu Shot? Yearly immunization for the influenza virus is recommended for anyone who has a chronic condition. If you are a transplant recipient or on a donor list, ask your physician about the Flu Vaccine. Starting in 1993, Medicare will pay for the influenza vaccine. =========================================================================== XI. Blood marrow transplant specific sources =========================================================================== Become a marrow donor --------------------- Bone marrow transplantation (BMT) is an effective treatment for some forms of leukemia and is being evaluated in treatments for other kinds of cancer. A donor is needed who matches the patient's tissue type in order to make the transplant work. Since the odds of any two people matching are small, a large number of possible donors is needed in order to find a match. Information about how to be registered in the database for tissue type matching and bone marrow donation can be obtained from the National Bone Marrow Registry at (800) MARROW-2. They'll answer any questions and provide you with local centers for testing. To register, a small amount of blood is needed for typing. The operation to remove marrow is simple and only slightly discomforting. Within days, a donor regenerates the marrow. Resources --------- The BMT Newsletter is published bi-monthly by a former BMT patient for BMT patients. It is free, although they also accepts contributions. The address is: BMT Newsletter, 1985 Spruce Ave., Highland Park, IL 60035, phone 708-831-1913. BONE MARROW TRANSPLANT SUPPORT NETWORK (800-826-9376) A telephone support network for Bone Marrow Transplant patients & families. Path: bloom-beacon.mit.edu!hookup!usc!howland.reston.ans.net!gatech!newsxfer.itd.umich.edu!zip.eecs.umich.edu!panix!cmcl2!newsserv.cs.sunysb.edu!ysics.physics.sunysb.edu!mhollowa From: mhollowa@epo.som.sunysb.edu (Michael Holloway) Newsgroups: bit.listserv.transplant,sci.med,sci.bio,sci.answers,news.answers Subject: bit.listserv.transplant FAQ, Organ transplantation newsgroup (Part 2 of 2) Followup-To: bit.listserv.transplant Date: 20 May 1994 20:57:51 GMT Organization: Institute For Theoretical Physics Lines: 716 Approved: news-answers-request@MIT.Edu Distribution: world Expires: 06/19/94 Message-ID: References: Reply-To: mhollowa@epo.som.sunysb.edu (Michael Holloway) NNTP-Posting-Host: csws3.ic.sunysb.edu Summary: This is a description of the bit.listserv.transplant newsgroup and its parent mail list, TRNSPLNT. Frequently asked questions regarding organ transplantation are addressed. A list of resources for transplantation patients is provided. Originator: mhollowa@csws3.ic.sunysb.edu Xref: bloom-beacon.mit.edu bit.listserv.transplant:1035 sci.med:42481 sci.bio:10722 sci.answers:1166 news.answers:19776 Posted-By: auto-faq 2.4 Archive-name: medicine/transplant-faq/part2 Last update 5/20/94 Part 2 of bit.listserv.transplant FAQ The following is a list of financial and support resources that are copied primarily from a pamphlet provided by Standtlanders Pharmacy and The Transplant Foundation, with additional information from a list provided by American Preferred Plan and people on the TRNSPLNT mail list. Inclusion of pharmacy companies here is not an endorsement of their services. In fact, it is recommended that patients very carefully examine whether their services are worth the added cost to your medication expenses. The word on the TRNSPLNT list is that they are convenient, but expensive. March, 1994 Mike Holloway mhollowa@epo.som.sunysb.edu ========================================================================== =============================================== National Transplant Patient Resources Directory =============================================== provided by Stadtlanders Pharmacy and The Transplant Foundation (with additional information from American Preferred Plan) The Transplant Foundation The Transplant Foundation is a national, non-profit volunteer organiza- tion providing resource information and direct grants to post-transplant recipients to offset the costs of immunosuppressive medications. The number of individuals who can receive assistance and the grant amounts are determined by total contributions received each year. The Foundation serves as a clearinghouse for information as well as an advo- cate for the rights of transplant recipients. For more information on The Transplant Foundation call 800-285-5115. Stadtlanders At Stadtlanders we witness the miracle of transplantation everyday through the 10,000+ transplant recipients we serve. As the first pharmacy dedicated to serving the needs of the transplant community, Stadtlanders provides individuals with medication delivery and insurance billing services nationwide. The Social Services Department offers financial and emotional counseling as well as resource information. To learn more about Stadtlanders services call 800-238-7828. American Preferred Plan APP is the leading free membership organization delivering prescription medications, directly to you home or office & providing linkages to community resources & national support networks. Call your APP membership specialist for a confidential planning consultation. 800-227-1195 Other companies offering pharmaceutical delivery services: ---------------------------------------------------------- Express Pharmacy Services. 800-826-8850 PO Box 94999 Birmingham, AL 35220-9989 CHRONIMED PHARMACY P.O. BOX 47945 MINNEAPOLIS, MN.55447 (THEY PUBLISH ENCORE MAGAZINE FOR ORGAN TRANSPLANT PATIENTS) 800-888-5753 HOMECARE MANAGEMENT, INC. 80 AIR PARK DRIVE RONKONKOMA, N.Y. 11779 800-637-5633 (NY) 800-927-4642 (TX) 800-927-4643 (CA) 800-927-4644 (PA) 800-829-4645 (FL) 800-637-5633 (DC) --------------------------------------------------------------------------- INDEX NATIONAL RESOURCES COVERAGE FOR HEALTH CARE/MEDICATIONS Prograf (FK506) reimbursement 1 COBRA 1 High Risk Insurance Pools 1 Medicaid Coverages 2 SSI - Supplemental Security Income Medicaid QMB - Qualified Medicare Beneficiary Medicare 3 Medicare Supplemental Insurance (Medigap Policy) 3 State Kidney Programs 3 State Pharmaceutical Assistance Programs 4 Veterans Administration 4 Drug company payment assistance 4 NATIONAL RESOURCES EDUCATIONAL INFORMATION, FINANCIAL GRANTS, FUNDRAISING INFORMATION, MEDICATION GRANTS American Association of Kidney Patients 5 American Cancer Society 5 American Diabetes Association 5 American Heart Association 6 American Kidney Fund 6 American Liver Foundation 6 American Lung Association 6 American Organ Transplant Association 7 Children's Organ Transplant Association 7 Juvenile Diabetes Foundation International 7 The National Heart Assist and Transplant Fund 7 National Kidney Foundation 8 National Organization For Rare Disorders (NORD), Inc 8 Organ Transplant Fund, Inc 8 Pharmaceutical Manufacturers Association 9 The Transplant Foundation 9 TRIO 9 RESOURCES BY CATEGORY INDEX 10 --------------------------------------------------------------------------- pg. 1 ======================================================= National Resources Coverage for Health Care/Medications ======================================================= The following resources may provide coverage for your health care and medications. Please contact these resources to determine if you meet the eligibility requirements for such coverage. Prograf Reimbursement Hotline Jack Batterson (mulbattj@mizzou1) writes (5/19/94): I got a notice from Stadtlanders Pharmacy stating that FDA approved on April 8, 1994, FK506 for liver transplants. The new brand name for this will be Prograf. Patients who were receiving the drug in clinical studies will eventually be responsible for the cost of this drug. Questions about this transition program and patient's insurance coverage for this can call Prograf Reimbursement Hotline at 1-800-4-Prograf (1-800-477-6472), and those in Wash. DC area can call 202-393-5563. COBRA Consolidated Omnibus Budget Reconciliation Act If you have separated from a full-time place of employment recently, you may be eligible for COBRA coverage. The exception to this is an employee who enrolls in Medicare. In this case, the employer is not required to offer COBRA coverage, but the employer can choose to offer COBRA coverage. Under COBRA, an employer with 20 or more employees must offer continuation of the group health plan for approximately 18 or 29 months to an employee whose employment is terminated, if certain eligibility standards are met. The employee would be responsible for payment of premiums at the same cost (plus 2%) that the employer was paying. A dependent of the employee may be eligible for 36 months of coverage. To determine whether you might be eligible for COBRA coverage, contact your employer's employee benefits office. In addition, you can contact: U.S. Department of Labor--202-219-8776 Contact regarding non-public employment. Public Health Service--301 443-1886 Contact for state and local government employees. Internal Revenue Service--202-6224695 It takes approximately 3-5 working days to have a response to your request. HIGH RISK INSURANCE POOLS A directory of high-risk insurance policies available state-by-state has been put together by an organization called Communicating for Agriculture. These policies are rather expensive, not available in all states, and need to be carefully considered to determine if they meet your needs. However, when available, they may be an excellent way to obtain necessary health coverage. For information as to whether your state has such a high risk pool, call 800-445-1525. ------------------------------------------------------------------------- pg. 2 MEDICAID COVERAGES Medicaid often provides coverage for outpatient medications. There are several ways to become eligible for Medicaid benefits. A. SSI - SUPPLEMENTAL SECURITY INCOME Provides a minimum income level for aged (65 or over), blind, individuals with disabilities, and couples with limited income and limited resources. If you are eligible for SSI cash payments, you are likely to also be eligible for Medicaid coverage for medications. To determine if you are eligible for SSI, call the Social Security Office at 800-272-1213. B. MEDICAID There are two possible categories of need under the Medicaid program. 1. Categorically Needy - Individuals who fall at or below the income and resource level designated as the "poverty line" by their state must be covered by Medicaid for their health care, assuming all other eligibility criteria are met. 2. Medically Needy (Spend Down) - In some states, individuals who are above the income and resource level designated as the "poverty line" may be eligible for Medicaid through the medically needy program. In the states where such a program is offered, individuals are allowed to "spend down" their excess income (but not resources) to the "poverty line over a period of time. The "spend down" is like a 'deductible." It is the process of using medical expenses to reduce the income of an individual to the level of eligibility for Medicaid. C. QMB - QUALIFIED MEDICARE BENEFICIARY You are a Oualified Medicare Beneficiary if you are: ...age 65 or over or a person living with a disability, AND ...entitled to Medicare Part A ...have income that is not over the Federal Poverty level ...have resources that do not go over the limit set for SSI eligibility. If eligible, there is a possibility of Medicaid coverage for prescription medication and/or coverage of other Medicare premium costs. To apply, contact your local public assistance of tics. Note: For information regarding SSI, Medicaid, Spend Down, and QMB, call the Social Security Office at 800-772-1213. -------------------------------------------------------------------------- pg. 3 MEDICARE Medicare currently covers heart, liver and kidney transplants in an approved facility. Bone marrow transplants are covered only under specific diagnoses. Medicare Part B pays for immunosuppressive drugs for a period of one year from the date of discharge from the transplant admission. On August 6, 1993, Congress passed the Omnibus Budget Reconciliation Act of 1993 which will extend Medicare coverage for immunosuppressant medications for those who meet the eligibility guidelines. This extended coverage will be phased in by the following timetable: ... before 1995, coverage will continue to be for 12 months ... during 1995, coverage will be for 18 months ... during 1996, coverage will be for 24 months ... during 1997, coverage will be for 30 months ... during any year after 1997, coverage will be for 36 months MEDICARE SUPPLEMENTAL INSURANCE (Medigap Policy) Medicare does not always cover 100% of all medical needs. That is why there are medicate supplemental policies (Medigap), which are intended to cover some of the services that Medicare does not. In every state there are standardized Medigap policies which are created to fill these "gaps." Generally, an individual must purchase one of these Medigap policies within six months of their Medicare B effective date. There are three Medigap plans (H, I, and J) which offer LIMITED coverage for out-patient medications. You are strongly encouraged to call your State Insurance Department to determine if you are eligible to buy one of these policies. They can also advise which insurance companies are selling Medigap plans H, I or J. For the number of your State Insurance Department call the National Insurance Consumer Helpline at 800-942-4242. STATE KIDNEY PROGRAMS Only Kidney Transplant or Renal Patients There are approximately twenty-five states which have a state kidney program which may offer assistance with out-patient renal medications. To determine if your state has such a program, contact the National Organization for State Kidney Programs in Missouri at 800-733-7345. -------------------------------------------------------------------------- pg. 4 STATE PHARMACEUTICAL ASSISTANCE PROGRAMS The following states have programs with specific financial eligibility guidelines that offer assistance with out-patient medications to senior citizens andror persons with disabilities: - Connecticut CONN PACE Program - CoMecticut Pharmaceutical Assistance Contract to the Elderly and the Disabled-- 800-423-5026 Delaware The Nemours Health Clinic Program New Castle County--302-429-8050 Kent and Sussex County--800-292-9538 - Illinois Pharmaceutical Assistance Programs 800-624-2459 or 217-524-0435 - Maine Elderly Low-Cost Drug Program--800-773-7894 - Maryland Pharmacy Assistance Program--800-492-1974 - New Jersey PAAD Program - Pharmaceutical Assistance to the Aged and Disabled--800-792-9745 - New York EPIC Program--800-332-3742 - Pennsylvania PACE Program - Pharmaceutical Assistance Contract for the Elderly--800-225-7223 VETERANS ADMINISTRATION If you have a military history with an honorable discharge, it may be possible to become eligible for VA benefits. However, it has become more and more difficult to become eligible without a service-connected disability. To determine your eligibility, contact your local Veterans Hospital or VA office. PAYMENT ASSISTANCE Ask your doctor to call for information and paperwork. DRUG Manufacturer Telephone # ---- ------------ ----------- BACTRIM Roche Labs 800-526-6367 CALAN Searle 800-542-2526 CARDlZEM Marion Merel Dow 800-552-3656 DILANTIN Parke-Davis 800-755-0120 EPOGEN Amgen Inc. 800-272-9376 IMURAN/ZOVIRAX Burroughs Wellcome 800-722-9294 NEUPOGEN Amgen Inc. 800-272-9376 SANDIMMUNE Sandoz 800-447-6673 VASOTEC,PRILOSCEC Merck, Sharp & Dome 800-637-2579 ZANTAC Glaxo 800-452-9677 MICRONASE Upjohn (616)323-6004 * Abbott Laboratories/Ross Laboratories, (202)637-6889, (800)922-3255 * Adria Laboratories Inc. (614)764-8100 * Allegan Prescription Pharmaceuticals (800)347-4500, extension 6219 * Boehringer Ingleheim (203)798-4131 * Bristol-Myers Squibb (800)736-0003 * Burroughs-Wellcome (919)248-4418 * Ciba-Geigy (908)277-5849 * Genentech Inc. (800)879-4747 * Hoechst-Roussel (800)776-4563 * ICI/Stuart (302)886-2231 * Immunex Corp. (206)587-0430 * Johnston & Johnston (Ortho Biotechnology) (908)704-5232 * Johnston & Johnston (Janssen Pharmaceuticals) (908)524-9409 * Eli Lily and Co. (317)276-2950 * Norwich-Eaton (607)335-2079 * Pfizer Pharmaceuticals (800)869-9979 * Sanoll Winthrop (212)907-2000 * Schering-Plough (800)822-7000 * Sigma-Tau (800)999-6673 * SmithKline Beecham (Program 1: all pharmaceuticals) (215)751-5760 * SmithKline Beecham (Program 2: Eminase and Triostat) (800)866-6273 * Syntex Laboratories (800)822-8255 * Wyeth-Ayerst Laboratories (215)971-5604 -------------------------------------------------------------------------- pg. 5 ==================================================================== National Resources Educational Information, Financial Grants, Fundraising Information, Medication Grants ==================================================================== Listed in alphabetical order are agencies that may offer assistance with educational information, financial grants, fund raising information, and medication grants. Please refer to the Resources by Category guide on page 10 of this directory to quickly determine which agencies offer the resource you need. In addition, the following letters are noted after each agency name to indicate resources offered: E - Educational Information F - Financial Grants FR - Fundraising Inforination M - Medication Grants AMERICAN ASSOCIATION OF KIDNEY PATIENTS (E) 111 S. Park Street, Suite 405 Tampa, Florida 33606 800-749-2257 Purpose is to promote the welfare of kidney patients through education and advocacy. Self-help and patient education are key elements of local chapter activities. AMERICAN CANCER SOCIETY (E, M) 1599 Clifton Road Atlanta, Georgia 30329 800-227-23g5 Non-profit health organization that supports education and research in cancer prevention, diagnosis, detection and treatment, with special services available to cancer patients. Some chapters offer limited medication grants. AMERICAN DIABETES ASSOCIATION (E) 1660 Duke Street Alexandria, Virginia 22314 800-232-3472 Non-profit health organization that provides the general public, diabetics, and health- care professionals with educational support including books, literature and seminars. ---------------------------------------------------------------------- pg. 6 AMERICAN HEART ASSOCIATION (E) 7272 Greenville Avenue Dallas, Texas 75231-4596 800-AHA-USA1/800-242-8721 Callers are routed to a local American Heart Association office and can obtain infor- mation about heart disease and the type of support services available in local area. Also, callers can receive a free brochure, "About Heart Transplants." AMERICAN KIDNEY FUND (ELF) 6110 Executive Boulevard, Suite 1010 Rockville, Maryland 20852 800-638-8299 Non-profit health organization that provides limited grants to needy dialysis patients, transplant recipients and donors to help cover the cost of health-related expenses, transportation, medications, etc. Provides information and support for kidney donation and transplantation as well as general education and information on kidney diseases. AMERICAN LIVER FOUNDATION (E, FR) 1425 Pompton Avenue Cedar Grove, New Jersey 07009 800-223-0179 Voluntary agency dedicated to fighting liver disease through research, education and patient self-help groups. Provides fund raising information and will act as trustee for monies raised. AMERICAN LUNG ASSOCIATION (E) 1740 Broadway New York, New York 10019 800-LUNG-USA/800-586-4872 Non-profit, voluntary health organization that offers information to people considering lung transplant, and to those individuals who are at any point in the lung transplant process. Callers can receive a fact sheet on lung transplantation and a list of trans- plant centers nationwide. This association can provide referrals to local support groups, as well as contacts with other people who have had a lung transplant or are waiting for a transplant. ------------------------------------------------------------------------- pg. 7 AMERICAN ORGAN TRANSPLANT ASSOCIATION (AOTA) (E, FR) P.O. Box 277 Missouri Citys Texas 77459 713-261-2682 Private, non-profit group that provides numerous services to recipients and their families. Including airfare and bus tickets, advice on fund raising and establishing trust funds. Will act as trust fund, no administrative fees collected. AOTA publishes a newsletter for members. Individuals needing airfare or bus tickets must be referred by their transplant center. CHILDREN'S ORGAN TRANSPLANT ASSOCIATION (COTA) (FR) 2501 COTA Drive Bloomington, Indiana 47403 800-366-2682 National, non-profit agency helps organize local community in fund raising for the individualifamily in order to assist with pediatric transplants and related expenses. COTA also assists adults. All funds raised go to the individual, no administrative fees collected. JUVENILE DIABETES FOUNDATION INTERNATIONAL (E) 432 Park Avenue South New York, New York 10016 800-JDF-CURE/800-223-1138 Non-profit health organization supporting diabetes research. Provides information and brochures on diabetes. Offers referrals through its chapters. THE NATIONAL HEART ASSIST AND TRANSPLANT FUND (E,F,FR) 519 West Lancaster Avenue, PRO. Box 163 Haverford, Pennsylvania 19041 800-NHATF99/800-642-8399 Private, non-profit group dedicated to providing financial, social and emotional support to patients needing heart, heartalung, or lung transplants and their families. NHATF provides modest grants for transplant related costs. Provides information on centers, support groups, and materials. (Continued) --------------------------------------------------------------------------- pg. 8 (continued....) Individuals may establish regional restricted funds through NHATF. Assists heart, heartalung, and lung transplant patients with fund raising by providing expertise and by acting as a trust fund for monies raised. NATIONAL KIDNEY FOUNDATION (E) 30 E. 33rd Street, 11th Floor New York, New York 10016 800-622-9010 Voluntary health agency seeking the total answer to diseases of the kidney and urinary tract...including prevention, treatment, and cure. The Foundation's program brings help to people suffering from kidney disease through research, patient and community services, professional education and public information. NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD),INC. (E,M) P. O. Box 8923 New Fairfield, Connecticut 06812-2783 800-447-6673/203-746-8958 This organization manages a drug cost share program for individuals who cannot afford Sandimmune (cyclosporine). To inquire about the application process, call 800 447-6673 or 203-746-8958. Allow 8-10 weeks for eligibility to be determined. Serves as a clearinghouse for information for over 5,000 rare disorders. This informa- tion is clearly written for the lay person. NORD can also connect patients with the same or similar illnesses with each other. ORGAN TRANSPLANT FUND, INC. (FR, M) National Office 1027 South Yates Road Memphis, Tennessee 38119 800489-3863 Offices located in selected states. Assists candidates/recipients nationwide in obtaining transplants and after care, as well as providing essential support and referral services. Provides clients with fund raising expertise and materials and assures that funds raised are properly dispersed. Limited emergency grants available for medications of not longer than 3 months duration. Administrative fee collected. ------------------------------------------------------------------------- pg. 9 PHARMACEUTICAL MANUFACTURERS ASSOCIATION (M) 1100 Fifteenth Street NW Washington, DC 20005 This association publishes the "Directory of Prescription Drug Indigent Programs" from information provided by member companies. The directory currently lists 59 programs alphabetically by company. Each entry details how to apply, drugs that are covered, and basic eligibility requirements. A free copy may be obtained by writing to PMA, at the above address. The request must be received on physician, health-care professional or agency letterhead. THE TRANSPLANT FOUNDATION (E, M) 8002 Discovery Drive, Suite 310 Richmond, Virginia 23229 804-285-5115 National, non-profit volunteer organization providing grants to post transplant recipients to offset the costs of immunosuppressive medications. The number of individuals who can receive assistance and the grant amounts are determined by total contributions received each year. The Foundation serves as a national clearinghouse for information, as well as an advocate for the rights of transplant recipients. TRIO Transplant Recipients International Organization 244 North Bellefield Avenue Pittsburgh, PA 15213 412-487-2210 TRIO is an independent non-profit international organization committed to improving the quality of life of transplant candidates, recipients, and their families. TRIO, through a network of local chapters, serves its members in the areas of support, advocacy, awareness and education. TRIO awards $1,000 scholarships annually to transplant recipients wishing to pursue post-secondary education. Clearinghouse for educational materials. Referrals made to local chapters. -------------------------------------------------------------------------- pg. 10 ===================== RESOURCES BY CATEGORY ===================== EDUCATIONAL INFORMATION AMERICAN ASSOCIATION OF KIDNEY PATIENTS 5 AMERICAN CANCER SOCIETY 5 AMERICAN DIABETES ASSOCIATION 5 AMERICAN HEART ASSOCIATION 6 AMERICAN KIDNEY FUND. 6 AMERICAN LIVER FOUNDATION 6 AMERICAN LUNG ASSOCIATION 6 AMERICAN ORGAN TRANSPLANT ASSOCIATION (AOTA). 7 JWENILE DIABETES FOUNDATION INTERNATIONAL. 7 THE NATIONAL HEART ASSIST AND TRANSPLANT FUND 7 NATIONAL KIDNEY FOUNDATION 8 NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD), INC 8 THE TRANSPLANT FOUNDATION 9 TRIO 9 FINANCIAL GRANTS AMERICAN KIDNEY FUND 6 THE NATIONAL HEART ASSIST AND TRANSPLANT FUND 7 FUNDRAISING AMERICAN LIVER FOUNDATION 6 AMERICAN ORGAN TRANSPLANT ASSOCIATION (AOTA) 7 CHILDREN'S ORGAN TRANSPLANT ASSOCIATION (COTA) 7 THE NATIONAL HEART ASSIST AND TRANSPLANT FUND 7 ORGAN TRANSPLANT FUND, INC. 8 MEDICATION GRANTS AMERICAN CANCER SOCIETY 5 NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD), INC 8 ORGAN TRANSPLANT FUND, INC. 8 PHARMACEUTICAL MANUFACTURERS ASSOCIATION 9 THE TRANSPLANT FOUNDATION 9 If you are aware of any other national resources that you would like to have reviewed for inclusion in the next printing of this directory, please call Stadtlanders Social Services Department at 800-238-7828 and/or The Transplant Foundation at 804-285-5115. Thank you for any resource information you are able to contribute. We hope that this information is helpful to you but, by no means is this an all inclusive list of resources. You are always encouraged to seek the support and direction of the social worker at your medical facility.