Amiga Plus 1995 #2/Amiga Plus CD - 1995 - No. 2.iso/internet/faq/englisch/bit.listserv.transplant

Text File | 1995-04-11 | 97.1 KB | 2,528 lines

Posted-By: auto-faq 2.4
Archive-name: medicine/transplant-faq/part1


Modifications since 2/5/95

Added new address for stamp campaign petitions.
Added info on Dying to Breath video to section VII.
Added information about the Atlantic Canada Organ Recipient Network
  (ACORN) to section VII.
Added Medic Alert bracelet information to Part 2, section II.
Additional information on Long Distance Love, Part 2, section II.
Added table for Medicare extended coverage to Part 2, section II.

Contents

Part 1:
I. The TRNSPLNT mail list - How to subscribe
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 - Patient support groups, services, and media
VIII. European professional transplant organizations and patient support
    groups
IX. Transplant fund raising
X. Live kidney donor information
XI. Renal transplant specific sources and information
XII. Bone marrow transplant specific sources
    Bone marrow donation information

Part 2:
I. National Transplant Patient Resources Directory
II. Other Resources
    Other companies offering pharmaceutical delivery services
    Financial and travel assistance
    Medicare drug cost coverage
    Additional government programs of interest
    Patient specific education and support


About this FAQ
--------------
This FAQ is archived at rtfm.mit.edu and available by ftp
under pub/usenet/bit.listserv.transplant.  Its available by gopher from
any site with a link to the MIT ftp archive, such as
arthur.cs.purdue.edu under the directory tree:
FTP Servers outside Purdue/
Non-Purdue Information (e.g., libraries, ftp, phonebooks)/
Usenet FAQ archives (rtfm.mit.edu)/
pub/ usenet-by-hierarchy/
or  usenet-by-group/

A gopher veronica search using "medicine/transplant-faq" will also
get you the current version.

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 and Fritz Dolak.

Part 2 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 printed copy of which can be obtained by
calling 800-285-5115.

Mike Holloway
[e-mail]

=========================================================================
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.  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 [e-mail] 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.

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 [e-mail]

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 [e-mail]
         or [e-mail]

   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 [e-mail] (or [e-mail]).

   To subscribe, send the following command to [e-mail]
   or [e-mail] via email:

      SUB TRNSPLNT Your Full Name

   where "Your Full Name" is your name.  For example:

      SUB TRNSPLNT Billy Rubin

   Owner: Dan Flasar [e-mail]

   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.

Name=Yale biomedical gopher
Host=info.med.yale.edu
Port=70

URL: gopher://info.med.yale.edu:70/11/Disciplines/Discipline/Transplant

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 Mike
Holloway at [e-mail], phone: [phone].  Other
file types can be accommodated but please check ahead of time.  If
you need help with e-mail or preparation of the file, please contact
Mike Holloway.  Most word processors have a simple command for
making an ASCII, or plain text, file from anything created in that
program.  If anyone wants to post information on the World Wide Web,
please see TransWeb information below.

Below is a copy of the menu contents for the Organ and tissue
transplant information directory as of February 3, 1995.

      1.  *** Organ Donation Conference:  Perspectives from the Humanities
      2.  Bone Marrow Transplant Information (U. Penn. Med. School)/
      3.  Current UNOS transplant statistics
     4.  Gallup Poll on Attitudes Towards Organ Donation
      5.  HRSA organ transplantation fact sheet
      6.  Issues of UNOS Update/
          1.  UNOS Update, June 1993, part 1
          2.  UNOS Update, June 1993, part 2
          3.  UNOS Update, July-August 1993, part 1
          4.  UNOS Update, July-August 1993, part 2
          5.  UNOS Update, September-October 1993, part 1
          6.  UNOS Update, September-October 1993, part 2
          7.  UNOS Update, July 1994
          8.  UNOS Update, October 1994/

      7.  Legislative history of organ donation
      8.  Live kidney donor information
      9.  National Resource Directory for transplant patients (updated 3/94)
      10. Organ trafficking myths/
          1.  Critique of French film "Organ Snatchers"
          2.  Organ trafficking myths
          3.  Report to UN on Child Organ Trafficking Rumor
          4.  UNOS paper on organ theft myths

      11.  Relevant articles from National Kidney Foundation Newsletter
      12. Transplant ethics/
          1.  Evaluation of the ethics of presumed consent...
          2.  Financial incentives for organ donors
          3.  Preferred status for organ donors

      13. Transplant fund raising (from BMT Newsletter, 11/93)
      14. UNOS Brochures/
          1.  Questions a patient should ask
          2.  What every patient needs to know

      15. UNOS News Release, January 13, 1995 -
          U.S. Organ Transplants Increase; Donation Shows Little Change
      16. Xenograft transplantation:  "The Transplant Gap"

To be added shortly:
    Links to TransWeb, RenalNet, and an excerpt from the book Death
      to Dust dealing with organ donation.
    Link to a gopher site with FAQ archive for bit.listserv.transplant
      FAQ access.
    Graphics from Gallup Poll


Other transplant related information sites on the net
-----------------------------------------------------
(See also BMT gopher sites, section XII.)

WWW
---
TransWeb

TransWeb is a world wide web page for sharing information on organ
donation and transplantation.  It includes answers to common
questions about transplantation, information on donation, new
developments in transplantation, a bibliography, and links to other
transplantation resources.  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.med.umich.edu/trans/transweb/twhome.html
and suggestions and contributions can be sent to
[e-mail]


Renalnet Home Page
http://ns.gamewood.net//renalnet.html

Gopher
------
Renalnet: United States Renal Data Systems
Host= ns.gamewood.net
URL: gopher://ns.gamewood.net/11/renalnet/usrds/

Death to Dust: Organ Donation by Iserson
Host=gopher.mcw.edu
Port=72
Path=1/Bioethics Texts/Death to Dust: Organ Donation by Iserson
URL: gopher://gopher.mcw.edu:72/11/Bioethics%20Texts/Death%20to%20Dust%3a%20Orga
n%20Donation%20by%20Iserson


=========================================================================
III. Organ donation, frequently asked questions
=========================================================================

contributed by Alex Bost, [e-mail]

*** 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 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 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 (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:

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

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

"Solving the Organ Donor Shortage", The Partnership for Organ Donation,
Inc. [phone].

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 [phone]
- also available through the Yale biomedical gopher (see section II)

Gallup Poll on Attitudes Towards Organ Donation, available in the
Yale biomedical gopher (see section II), and from The Partnership
for Organ Donation, Inc. [phone].


==========================================================================
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 in the
Yale biomedical gopher (see section II), and from The Partnership
for Organ Donation, Inc. [phone].


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 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 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 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,

and "UNOS paper on organ theft myths", available through the Yale
biomedical gopher (see section II).


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 the more irresponsible
writings on the subject.

Further information is available from Todd Leventhal at the US
Information Agency.  E-mail: [e-mail] Phone: [phone].
Fax: [phone].
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.  UNOS
Update, May 1994 (also available from Todd Leventhal
[e-mail] 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 Fights 'Baby Parts' Rumor in Geneva. UNOS Update, May 1994

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.

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
==========================================================================

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 Maurie Ferriter, P.O. Box 557, Lakeland, MI 48143-0557
--------------------------------------------------------------------------

From Ken Lifton (January 1995):

Over 250,000 signatures have been collected in the organ donation postage
stamp campaign around the country and forwarded to the Citizen's Stamp
Advisory Committee (I believe).  I am sad to report that the man who started
the effort, Ed Heyn (kidney recipient), died last month.

The support group he founded (Organ Transplants of Southwest Michigan -- now
a TRIO Chapter) has vowed to carry on the work of Ed's dream of the stamp.
Many persons and groups around the country have been collecting signatures.

Unfortunately up until now the Citizen's Stamp Advisory Committee, I believe
considers the Stamp "controversal".  Lets all redouble our efforts and write
to the address (below).

"The address people can write to, in favor of an Organ Donation Stamp is:

Citizen's Stamp Advisory Committee
c/o Stamp Management
U.S. Postal Service
475 L'Enfant Plaza, SW Room 4474E
Washington, DC  20260-2437



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 (see below).

==========================================================================
VII. Sources of information on organ donation and transplantation
    -Patient support groups and services
==========================================================================

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 [phone].  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 [e-mail].


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
2 Oliver St. International Place
Boston, Massachuetts  02109

telephone:[phone].


Support groups
--------------

A.C.O.R.N. (Atlantic Canada Organ Recipient Network)
----------------------------------------------------
from Oran Mosher <[e-mail]>

The group currently consists of people who are from across Atlantic
Canada. A.C.O.R.N. holds meetings every other month and produces a
Newsletter three times a year. The Newsletter is called ACORN News. The
Newsletter is used as a communication tool to keep it's members informed on
various topics. The group promotes organ donor awareness, peer volunteer support,
organizes social events and holds fundraisers to help with financial costs.
For more information about A.C.O.R.N. or to receive a personal copy
of ACORN News send your queries to any of the below addresses.
Mailing Address:                A.C.O.R.N.
                                c/o V.G. Hospital
                                1278 Tower Rd.
                                Halifax, NS
                                B3H 2Y9 Canada

Voice Mail / Fax Machine:       [phone] - Voice
                                [phone] - Fax

Diamond State Organ Donor Association
-------------------------------------
PO Box 471                        800-464-4357
Dover, DE  19903
Main emphasis is on education and donor awareness.  Delaware Motor Vehicle
Dept. recently began supporting a campaign for Donor cards and Green Dots on
driver's licenses.  Meetings are held in both Seaford and Stanton, DE.

Donor Network of Arizona
------------------------
From Dale Ester <[e-mail]>:
DNA is an OPO and has a logo - "the vital link for organ, tissue,
and eye recovery. SHARE YOUR LIFE ...SHARE YOUR DECISION." DNA is
located at 3877 N 7th St # 200 Phoenix, AZ 85014 [phone]
1-800 94-DONOR . Jack Cremin is the Director.  DNA has produced a
donor awareness educational video which is currently showing on
public TV. DNA has a Speaker's Bureau of organ recipients and donors
(approximately 25 individuals) who personally spread the word
(educate) others about the benefits of organ donation. I am on this
Bureau (for the past 3 1/2 years).
    The same telephone number/address also gets in touch with Robert
Miller (Director) of the ARIZONA COALITION FOR ORGAN DONATION.


Liasons for Life Support Group
------------------------------
800-543-6391
c/o DE Valley Transplant Program
Newly reorganized umbrella organization to support and
encourage  support groups in area served by DE Valley
Transplant Program.  The DE Valley Transplant Program is the
regional procurement organization for Delaware and can be
reached at:
DE Valley Transplant Program     800-Kidney1
2000 Hamilton Street, Suite 201
Philadelphia, PA  19130-3813


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: (800) TRIO-386, (202)
293-0980, fax [phone].  They also have pamphlets and organ
donor cards available.


Other
-----

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.

Books, Magazines, and Videos
----------------------------

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

"Transplant Success Stories"
Contains histories of recipients and donor families.
Edited by Paul I. Terasaki and Jane Schoenberg, 1993
Published by the UCLA Tissue Typing Laboratory
Order  $5.00 a copy:

        UCLA Tissue Typing Laboratory
        950 Veteran Avenue
        Los Angeles, CA 90024
        Telephone: [phone]
        FAX:       [phone]


"Taking Heart" by A.C. Greene.
1990, Simon & Schuster.
A first person account by a heart transplantee.

From Fritz Dolak <[e-mail]>:
Video: *Dying to Breathe*.  It can be
obtained for $19.95 from Nova: 1-800-628-5355.  Though it contains a 1993
copyright, I believe it was filmed c. 1989.  I may be wrong in this.  My
transplant center made all lung transplant candidates view it.


============================================================================
VIII. European professional organizations and patient support groups
============================================================================
If anyone would care to contribute information on transplant related
topics in other countries, please send it to
[e-mail], or post it to bit.listserv.transplant.

UNOS-like Organizations and Transplant Programs in Other Countries
------------------------------------------------------------------
    Metro Organ Retrieval, Toronto General Hospital    416/390-3587

    Metro Transplantation, Montreal, Quebec        514/527-0047

    Foothills Hospital, Calgary, Alberta        403/283-2243

    Victoria General Hospital, Halifax, Nova Scotia    902/428-2222

    Eurotransplant Foundation            011-31-071-268008
    University Hospital
    Rijnsburgerweg 10
    2333 AA Leiden, The Netherlands
    Attn: Bernard Cohen, Director

    UK Transplant Center                011-44-272-507-777
    Southmead Rd.
    Bristol BS10 5ND
    England

    Scandia Transplant                011-46-8-7465-723
    Dept. of Clinical Immunology
    Huddinge Hospital
    Huddinge, Sweden
    Attn: Dr. Hakan Gobel

    France-Transplant                011 -33(1)42.06.94.90
    Hopital Saint Louis
    1, av. Claude Vellefaux
    75475 Paris Cedex 10
    France
    Attn: Pr. Jacques Hors, Secretary General

Center Hosp Lyon Sub, Lyon University, Division of
Nephrology, Pav 2F, 69310 Pierre Benite, Lyon Ph: (33)78 86
1309 Fax: [phone]

Hospital Edouard Herriot, Transplant Unit, Pl D'Arsonval,
69347 Lyon Cedex 03  Ph:  (33) 78 540371  Fax:  (33) 72
3370011

    Organizacion Nacional de Trasplantes        011-34-1-3142406
    Central Organ Exchange Coordination Office    3142474
    Sinesio Deloado 8                 3142488
    28029 Madrid                    3142568
    Spain                        3142634
    Attn: Dr. Rafael Matesanz, National Transplant Coordinator 3142669

    Organizacion Nacional de Trasplantes         011-34-3-4125454
    Coordinating Office for International Organ Exchange 4120969
    Gran Via de las Corts Catalans             5913398303
    I.C.S. Building, 5th Floor
    08007 Barcelona
    Spain
    Attn: Dra. Rosa Deulofeu

    Latvian Transplantation Center            011-007-0132-614210
    13, Pilsonu str.                619091
    P. Stradin Republic Clinical Hospital        613474
    226002, Riga
    Latvia

    Swiss Transplant
    National Reference Laboratory for Histocompatibility
    Hop i tat Can tonal Uni versi taire , Geneva
    Switzerland
    Attn: M. Jeannet or C. Goumaz

    Hungary Transplant
    Budapest                    011-36-1-1334-143
                                1143-635
    Szeged                        011-36-06-62-21643
    Dabrecen                    011 -36-06-52- 18855

    Italy-CCST                    0l 1-39-91-651-7692-4
    International Coordinating Center    011 -39-91 -543-554 Cod. 32118
    Unsversita di Roma ZLa Sapienza"
    II Clinica Chirurgica
    Viale del Policlinico
    00161 Roma
    Italy

The European Transplant Coordinators Organization (ETCO)
--------------------------------------------------------
Contact: Linda Trekels, ETCO Executive Office, Steenveldstraat 18,
B-3210 Linden, BELGIUM.
Fax: [phone].


Dialysis and kidney transplant support groups:
---------------------------------------------
The list below was compiled by Gerald Huber
([e-mail]).

Germany:
DIATRA Verlag GmbH            German Association of Dialysis Physicians

Postfach 12 30                Deutsche Dialysegesellschaft
D-65332 Eltville/Rhein            niedergelassener Aerzte e.V.
Germany                 Bundesallee 243
Phone: [phone]            D-42103 Wuppertal
Fax: [phone]            Phone: [phone]

Federal Association of Transplant Recipients    German Heart Foundation

Bundesverband der Organtransplantierten     Deutsche Herzstiftung e.V.
Triftstr. 6                    Wolffsgangstr. 20
D-13353 Berlin                    D-60322 Frankfurt am Main
Phone: [phone]                Phone: [phone]

German Foundation for Organ Transplantation    Heartchild Association

Deutsche Stiftung Organtransplantation        Herzkind e.V.
Emil von Behring-Passage            Husarenstr. 70
D-63263 Neu-Isenburg                D-38102 Braunschweig
Phone: [phone]                Phone: [phone]


Austria:
Gesellschaft Nierentransplantierter
 und Dialysepatienten Oesterreichs
z. Hd. Hfrat Dr. Herbert Schmidt
Neulerchenfelderstr. 10/I/3/17
A-1160 Wien
Austria
Phone: [phone]

Switzerland:
VNPS
c/o Yvonne Guerini-Brunner
7 rte de Founex
CH-1291 Commugny
Switzerland
Phone: [phone]
There is also a french SSMIR and an italian ASPIR
group under the same adress.

Italy (north):
Associazione Altoatesina nefropatici
Via C. Battisti Str. Nr. 33
I-39100 Bolzano
Italy
or via the president
Florian Mair
St-Peter-Weg 19
I-39018 Terlan
Italy
Phone: [phone]

Luxenburg:
Association Luaxembourgeoise des
Malades Renaux e Transplantes a.s.b.i
BP 2713
L-1027 Luxembourg
Louxembourg
Vic Christoph, president
Phone: [phone]
               or 44112022

Europe:
CEAPIR
c/o Patricia Doherty
Pembroke Road
156 Ballsbridge
Dublin 4
Ireland
Phone: [phone]
Fax: [phone]

============================================================================
IX. Transplant fundraising
============================================================================
(see also the National Transplant Patient Resources Directory, part 2 of
the FAQ)

UNOS has a paper-bound booklet entitled "FINANCING
TRANSPLANTATION (What Every Patient Needs to Know)." The
booklet is FREE and a copy can be obtained by calling
1-800-24-DONOR.  It is loaded with invaluable information
relevant to those individuals considering and/or awaiting organ
transplantation.


The following is from the BMT Newsletter, November 1993, and reproduced
by [e-mail] 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 [phone]. 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, [e-mail] 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)

NATIONAL KIDNEY FOUNDATION

30 E. 33rd Street, 11th Floor
New York, New York 10016
800-622-9010

NKF's new Family Focus Program features two newsletters "The Parent
Connection" and "Straight Talk", for parents, and for children and
young adults respectively.  If you would like to receive a free
subscription at home, please write to "PCST" c/o the address above
or call using the above phone number.


contributed by Alex Bost, [e-mail]

*** 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. Bone marrow transplant specific sources
===========================================================================

Become a marrow donor - (800)MARROW-2
---------------------

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.

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.

Resources
---------

BMT-TALK mail list discussion group:

[e-mail] is a moderated mailing list for the discussion
of Bone Marrow Transplants.  To subscribe to bmt-talk send mail to
[e-mail] with the only word "subscribe" (no
quotes) in the body of the message.

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 [phone].  The on-line version is available through the
Oncolink gopher site (see below).

BONE MARROW TRANSPLANT SUPPORT NETWORK (800-826-9376)
A telephone support network for Bone Marrow Transplant patients &
families.


BMT information gopher sites:
-----------------------------
Oncolink

Information and on-line versions of the BMT Newsletter and the BMT
Handbook can be found in Oncolink.
WWW: http://cancer.med.upenn.edu/
gopher: cancer.med.upenn.edu
BMT information can be found in the Radiation Oncology and Medical
Oncology directories.  A link to this BMT information has been made
through the transplantation information directory in the Yale
biomedical gopher site (section II).

Cambridge University Bone Marrow Campaign
-----------------------------------------
gopher.cam.ac.uk  (port 70)

under Cambridge University / University Society Information /
Cambridge University Bone Marrow Campaign.

Alternatively, use the URL:

gopher://gopher.cam.ac.uk/11/CambUniv/univsoc/cubmc/

Contains the Bone Marrow Donation FAQ, information on the Cambridge
University Donor Clinic, and other sources.






Posted-By: auto-faq 2.4
Archive-name: medicine/transplant-faq/part2


Part 2 of bit.listserv.transplant FAQ

Modifications since 2/5/95

Added Medic Alert bracelet information.
Additional information on Long Distance Love.
Added table for Medicare extended coverage.

Contents

I. National Transplant Patient Resources Directory
II. Other Resources
    Other companies offering pharmaceutical delivery services
    Financial and travel assistance
    Medicare drug cost coverage
    Additional government programs of interest
    Patient specific education and support


The following is a list of financial and support resources.  Section I is
copied from a pamphlet provided gratis from Stadtlanders Pharmacy and The
Transplant Foundation.  Call either of them at the numbers below to get a
copy of the guide and be put on their mailing list for updates.  Section II
lists other resources and information provided by American Preferred
Plan, other organizations, and members of the TRNSPLNT discussion list.

Inclusion of pharmacy companies in this file is not an endorsement of
their services.  In fact, it is recommended that patients very carefully
examine whether the services are worth the added cost to your medication
expenses.  The word on the TRNSPLNT list is that they are convenient, but
expensive.

Mike Holloway
[e-mail]
==========================================================================

===============================================
National Transplant Patient Resources Directory
===============================================
provided by Stadtlanders Pharmacy and The Transplant Foundation

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.


---------------------------------------------------------------------------


                              INDEX

NATIONAL RESOURCES
COVERAGE FOR HEALTH CARE/MEDICATIONS

   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.


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                [phone]


--------------------------------------------------------------------------
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 Information
                        M - Medication Grants


AMERICAN ASSOCIATION OF KIDNEY PATIENTS (E)

National AAKP
100 South Ashley Drive
Suite 280
Tampa, Florida  33602

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
800-489-3863

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

        1735 I St. NW
    Suite 917
    Washington DC  2006

       (800) TRIO-386, [phone],
       fax [phone].

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
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
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.

=======================================================================


===================
II. Other Resources
===================

Other companies offering pharmaceutical delivery services:
----------------------------------------------------------

American Preferred Plan

from APP pamphlet:

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


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)


Additional drug payment assistance
----------------------------------
Have your physician enquire with the companies below about
reimbursement, grants, and special payment programs.


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.

from a pamphlet distributed by American Preferred Plan:
Drug companies
* Abbott Laboratories/Ross Laboratories, [phone], [phone]
* Adria  Laboratories Inc.  [phone]
* Allergan Prescription Pharmaceuticals [phone], extension 6219
* Boehringer Ingleheim [phone]
* Bristol-Myers Squibb [phone]
* Burroughs-Wellcome [phone]
* Ciba-Geigy [phone]
* Genentech Inc. [phone]
* Hoechst-Roussel [phone]
* ICI/Stuart [phone]
* Immunex Corp. [phone]
* Johnson & Johnson (Ortho Biotechnology) [phone]
* Johnson & Johnson (Janssen Pharmaceuticals) [phone]
* Eli Lily and Co.  [phone]
* Norwich-Eaton [phone]
* Pfizer Pharmaceuticals [phone]
* Sanofi Winthrop [phone]
* Schering-Plough [phone]
* Sigma-Tau [phone]
* SmithKline Beecham (Program 1: all pharmaceuticals) [phone]
* SmithKline Beecham (Program 2: Eminase and Triostat) [phone]
* Syntex Laboratories [phone]
* Wyeth-Ayerst Laboratories [phone]


Financial and travel assistance
-------------------------------

AIRLIFELINE

AirLifeLine is a non-profit charitable organization of private
pilots nationwide who donate their time, aircraft, and fuel to fly
medical missions.  To be considered for an AirLifeLine flight,
patients must be ambulatory and medically stable to fly, as
determined by a doctor. Also, they must be unable to afford a
commercial flight. This can be verified by a social worker, a
referring physician, or organization. If you'd like more
information, have your social worker or doctor call AirLifeLine at
800-446-1231.

If you'd like to make a contribution to AirLifeLine or know a pilot
who is interested in flying missions, call Air Life Line or write:
AirLifeLine, 1716 X Street, Sacramento, CA 95818.


THE BARBARA ANNE DEBOER FOUNDATION
Individual Fund-Raising Program.

Help is available for planning a campaign, and managing the donations to
insure full availability to you and full tax credit to those
who donate.  For information about this program call
1-800-895-8478.


From Dale Ester <[e-mail]>:
AHCCCS means ARIZONA HEALTHCARE COST CONTAINMENT SYSTEM

(State funded Medically Indigent / Medically Needy Healthcare Insurance)
Hours are 8 AM - 5 PM, Monday thru Friday.
The main switchboard phone number is [phone].
If calling on a rotary phone or need Spanish translation, call (602)
234-3655.
Certain restrictions apply - call for info.


Medicare drug cost coverage
---------------------------
(provided by Dale Ester <[e-mail]>)

The following is current information on the extent of reimbursement
that Medicare will provide for immunosuppressive medication under
the OBRA of 1993.  The specifics of the coverage time have changed.
Patients who have recently received their grafts should check to see
if their coverage has increased.

DISCHARGE   COVERAGE    COVERAGE  COVERAGE     TOTAL
DATE        PERIOD      PERIOD    PERIOD      MONTHS OF
            ENDS        RENEWS    ENDS        COVERAGE

08/1/93     07/3/94     01/1/95   01/31/95       13
09/l/93     08/31/94    01/1/95   02/28/95       14
10/l/93     09/30/94    01/1/95   03/31/95       15
11/1/93     10/31/94    01/1/95   04/30/95       16
12/l/93     11/30/94    01/1/95   05/31/95       17
0l/l/94     06/30/95                             18
02/l/94     07/31/95    01/1/96   01/31/96       19
03/l/94     08/31/95    01/l/96   02/29/96       20
04/l/94     09/30/95    01/1/96   03/31/96       21
03/l/94     10/31/95    01/1/96   04/30/96       22
06/l/94     11/30/95    01/1/96   05/31/96       23
07/l/94     06/30/96                             24
09/l/94     07/31/96    0l/l/97   01/31/97       25
09/l/94     08/31/96    0l/l/97   02/28/97       26
10/l/94     09/30/96    0l/l/97   03/31/97       27
11/l/94     10/31/96    0l/l/97   04/30/97       28
12/l/94     11/30/96    0l/l/97   05/31/97       29
01/1/95     06/30/97                             30
02/l/95     07/31/97    01/1/98   01/31/98       31
03/l/95     08/31/97    01/l/98   02/29/98       32
04/l/93     09/30/97    01/1/98   03/31/98       33
05/1/95     10/31/97    01/1/98   04/30/98       34
06/l/95     11/30/97    0l/l/98   05/31/98       35
07/l/95     06/30/98                             36


Additional government programs of interest
------------------------------------------
From Alex Bost <[e-mail]>:

*** 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.


Patient specific education and support
--------------------------------------
(See also Part 1, section VII; in Yale biomed gopher [described in Part
1, section II] UNOS Brochures/1. Questions a patient should ask 2.
What every patient needs to know)

from John S. Abbott <[e-mail]> (1/6/95):
AMERICAN SHARE FOUNDATION
(ASF & ASCOT)
P.O. BOX 6259
Alexandria, VA 22306-0259
1-800-80-SHARE

A National Charitable Non-profit Organization that provides
assistance to the general public awaiting organ and tissue
transplants and recovering transplant recipients, their caregivers
and family members.  The foundation will provide a clearinghouse for
information and personal support services.  The foundation will also
assist in enhancing public awareness for improving organ and tissue
donation and transplantation.  Some of the activities that the
American Share Foundation conducts are:

Public meetings and seminars that will advance public education and
awareness about organ and tissue donation and transplantation;

Communication and distributing information through the publication of
newsletters, magazines and pamphlets and resource guides on relevant issues
related to organ and tissue donation and transplantation;

The foundation is in the process of preparation of a "Transplant
Recipients Support Kit".


Transplant patient exercise video
---------------------------------
STADTLANDER'S has produced an exercise video for transplant recipients
called "Stars for Life" and is distributed free by calling 800 238 7828.
The video comes with a booklet addressing such topics as:

    The importance of regular exercise after transplant
    Ideas for a bone building workout
    The BORG Scale
    Exercise: to bring out the best you can be
    RX for a healthier you


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.  The
January `95 issue reports that they now have an 800 number for callers in
New Jersy, (800)48-FRIEND.  Callers outside New Jersey: [phone].
Furture plans call for exploring this new-fangled thing called e-mail.

Medic Alert bracelet
--------------------
From Jeff Punch <[e-mail]>

Medic Alert is a company that sells bracelets and necklaces and offers a 24
hour hot line number that people can call and get information on you based on
the ID number they read off of your bracelet.
You can enroll in Medic Alert by phone:  [phone]
For medical information most people specify the organ that was
transplanted, any major diseases like diabetes, and any severe
allergies.