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From: [email protected] (Michael Holloway)
Newsgroups: bit.listserv.transplant,sci.med,sci.answers,news.answers
Subject: FAQ: bit.listserv.transplant, Organ transplantation newsgroup(Part 3/4)
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Summary: This is a description of the bit.listserv.transplant newsgroup
and its parent mail list, TRNSPLNT. Frequently asked
questions regarding organ transplantation are addressed.
A list of resources for transplantation patients is provided.
Pointers to other Internet transplantation resources are provided.
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Archive-name: medicine/transplant-faq/part3

Part 3 of bit.listserv.transplant FAQ

Last updated 5/14/00

Added The Transplant Pharmacy to Part3, section IIa.

Contents

I. National Transplant Patient Resources Directory
II. Other Resources
a. Other companies offering pharmaceutical delivery services
b. Additional drug payment assistance
c. Financial and travel assistance
d. Medicare drug cost coverage
e. Additional government programs of interest
f. Patient specific education and support
Products
Organizations

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
[email protected]
=========================================================================

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

An updated version is now available at the Stadtlanders' web site
http://www.stadtlander.com/transplant/trnsdirect.html

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

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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.

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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.

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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.
(Note: This was revised in 1993. See section IIc below. MH)

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.

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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, Novartis Pharma 800-447-6673
NEUROL
VASOTEC,PRILOSCEC
Merck, Sharp & Dome 800-637-2579
ZANTAC Glaxo 800-452-9677
MICRONASE Upjohn (616)323-6004

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

[email protected]

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
800-227-2345

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)

3335 Cartwright Rd.
Missouri Citys, Texas 77459
281-261-2682

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
[email protected]
http://www.cota.org
National, non-profit agency helps organize local community in fund
raising for the individual family 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)

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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
http://www.rarediseases.org

Serves as a clearinghouse for information for over 5,000 rare disorders.
This information is clearly written for the lay person. NORD can also
connect patients with the same or similar illnesses with each other.

Unfortunately, we don't manage the Sandoz drug assistance program
anymore. However, you can contact Novartis (formerly Sandoz) at:
1-888-455-6655. Please contact us if we can be of any further assistance.
Sincerely,
NORD Information Services

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.

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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
http://www.trioweb.org

1735 I St. NW
Suite 917
Washington DC 2006

(800) TRIO-386, (202) 293-0980,
fax (202) 293-0973.

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.

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

a. 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)

The Transplant Pharmacy
http://www.transplantrx.com/
is an on-line Pharmacy specifically designed for transplant recipients and patients waiting to receive a transplant.
The Transplant Pharmacy is a division of SangStat Medical Corporation <http://www.sangstat.com/>, The Transplant Company?.

b. Additional drug payment assistance
----------------------------------

Needymeds.com, The Place to Learn About Pharmaceutical Manufacturer's
Drug Assistance Programs
http://www.needymeds.com/
Many pharmaceutical manufacturers have special programs to assist people
who can't afford to buy the drugs they need. One problem is that it's
often hard to learn about these programs. Our goal is to make this
information easily accessible.

(See also the National Transplant Patient Resources Directory above, pg. 4,
for other contacts.)
Have your physician enquire with the companies below about
reimbursement, grants, and special payment programs.

from a pamphlet distributed by American Preferred Plan:
Drug companies
* Abbott Laboratories/Ross Laboratories, (202)637-6889, (800)922-3255
* Adria Laboratories Inc. (614)764-8100
* Allergan Prescription Pharmaceuticals (800)347-4500, extension 6219
* Boehringer Ingleheim (203)798-4131
* Bristol-Myers Squibb (800)736-0003
* Burroughs-Wellcome (919)248-4418
* Ciba-Geigy (908)277-5849
* Eli Lily and Co. (317)276-2950
* Genentech Inc. (800)879-4747
* Hoechst-Roussel (800)776-4563
* ICI/Stuart (302)886-2231
* Immunex Corp. (206)587-0430
* Johnson & Johnson (Ortho Biotechnology) (908)704-5232
* Johnson & Johnson (Janssen Pharmaceuticals) (908)524-9409
* Norwich-Eaton (607)335-2079
* Pfizer Pharmaceuticals (800)869-9979
* Sanofi Winthrop (212)907-2000
* Schering-Plough (800)822-7000
* Sigma-Tau (800)999-6673
* SmithKline Beecham (Program 1: all pharmaceuticals) (215)751-5760
* SmithKline Beecham (Program 2: Eminase and Triostat) (800)866-6273
* Syntex Laboratories (800)822-8255
* Wyeth-Ayerst Laboratories (215)971-5604

Other companies:
* 3M Pharmaceuticals 800-328-0255
* Alza Pharmaceuticals 415-962-4243
* Astra USA, Inc. 800-488-3247
* Berlex 800-423-7539
* Fujisawa Prograf Patient Assistance Program - 800-477-6472
* Hoffman-LaRouche 800-526-6367
* Knoll 800-526-0710
* Lederle 800-526-7870
* McNeil Pharmaceut. 800-682-6532
* Miles 800-998-9180
* Ortho Pharmaceuitcals 800-682-6532
* Pharmacia, Inc. 800-795-9759
* Proctor & Gamble 800-448-4878
* Rhone-Poulenc Rorer 610-454-8298
* Roxane Labs 800-274-8651
* Serono 617-982-9000
* Survanta Lifeline 800-922-3255
* Zeneca Pharmaceuticals 800-424-372

c. Financial and travel assistance
----------------------------------

Air Care Alliance
(Thanks to Marion Leska for pointing this one out.)
http://www.aircareall.org/
The Air Care Alliance is a nationwide association of humanitarian flying
organizations dedicated to community service. Using their own time and
general aviation aircraft, pilot members of these organizations help
hundreds of people each month. ACA members help needy patients travel to
facilities where they are able to receive medical attention they would
otherwise do without.
There is an Air Care Alliance member near you. Call the AIR CARE ALLIANCE
Hotline: 1-800-296-1217

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.

ARIZONA HEALTHCARE COST CONTAINMENT SYSTEM (AHCCCS)
From Dale Ester <[email protected]>:
(State funded Medically Indigent / Medically Needy Healthcare Insurance)
Hours are 8 AM - 5 PM, Monday thru Friday.
The main switchboard phone number is (602) 254-5522.
If calling on a rotary phone or need Spanish translation, call (602)
234-3655.
Certain restrictions apply - call for info.

Baby Formula & Medical Supplies Network
This program has helped many families throughout the U.S. to provide
adequate nutrition for their children with liver disease.
Administered through BALT. See Biliary Atresia & Liver Transplant Network Inc.
Part 2, section II.

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.

Children's Liver Association for Support Services (C.L.A.S.S.)
26444 Emerald Dove Drive
Valencia, CA 91355
toll-free: 1-877-679-8256
(661) 255-0353
e-mail: [email protected]
http://www.classkids.org
Dedicated to addressing the emotional, educational and financial needs of
families with children afflicted with liver disease. C.L.A.S.S. offers
the Direct Family Support program for "last resort" financial assistance
for the families of pediatric liver patients. Types of financial needs
might include a parent's food allowance while their child is hospitalized,
lifeline telephone service for a child awaiting transplant, or
transportation expenses for a clinic visit. Recipients are typically
referred by a hospital social worker. We invite social workers and families
to contact us for more information about the Direct Family Support program.
C.L.A.S.S. is a qualified tax-exempt nonprofit organization under the
Internal Revenue Code
as described in section 501(c)(3).

PediaHope
PediaHope acts as an advocate in behalf of families with children in
catastrophic medical situations. PediaHope's mission is to intercede with
hospitals, physicians and insurers to resolve funding issues. The focus
of PediaHope is to remove barriers keeping children from receiving
urgent medical care. This includes placement on organ and bone marrow
transplant lists, cancer treatment, reconstructive surgery and other
major medical procedures.
Krasi Henkel, director, [email protected]
phone:(703) 757-HOPE fax: (304)728-0317

d. Medicare drug cost coverage and information
----------------------------------------------
(provided by Dale Ester <[email protected]>)

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

Medicare information:
---------------------
From Dale Ester <[email protected]>:
(Reference: Arizona Senior World, May 1995, Page 31.)

"Guide to Health Insurance for People with Medicare" (518B)
Discusses what Medicare pays and does not pay, types of private health
insurance to supplement Medicare and gives hints on shopping for private
health insurance.

"Medicare Coverage for Second Surgical Opinion" (521B)
Explains the importance of getting a second opinion for non-emergency
surgery, describes Medicare coverage of costs, and gives suggestions for
locating a specialist in your area.

""Medicare: Hospice Benefits" (591B)
Describes the scope of medical and support services available to Medicare
beneficiaries with terminal illness(es).

"Medicare and Managed Care Plans" (592B)
Describes the health services available to beneficiaries from health
maintenance organizations (HMO's).

"Medicare and Other Health Benefits" (593B)
Answers the question "Who pays first?" Explains the special rules that apply
to Medicare Beneficiaries who have other health plan coverage.

"Medicare coverage of Kidney Dialysis and Kidney Transplant Services: A
Supplement to Your Medicare Handbook" (594B)

Describes Medicare benefits for people with permanent kidney failure.
"Manual De Medicare" (595B)
The Spanish Language handbook.

"Medicare: Savings for Qualified Beneficiaries" (596B)
Explains that low-income beneficiaries may be able to get help paying
Medicare costs.

"Medicare and Your Physician's Bill" (520B)
Explains how Medicare pays for doctor services and how Medicare
determines how much it will pay.
=========================
To order a free copy of one or more of these publications, send an using
the name of the booklet supplied and the identification number (in
parentheses).

Mail order to:
Consumer Information Center, Department 33
Pueblo, CO 81009

Be sure to include your name, address, city, state, and zipcode.
Supplies may be limited. Allow 6 - 8 weeks for delivery.

e. Additional government programs of interest
---------------------------------------------
From Alex Bost <[email protected]>:

*** 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.

f. 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)

Products
--------

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

Medic Alert bracelet
--------------------
From Jeff Punch <[email protected]>

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: 1-800-432-5378
For medical information most people specify the organ that was
transplanted, any major diseases like diabetes, and any severe
allergies.

Transplant Awareness Inc.
-------------------------
(from Douglas Sur - [email protected])
Transplant Awareness Inc. sells pins, t-shirts, etc.. to the public to
help promote transplantation. If you are interested in obtaining some of
these items or a catalog:
-Email: [email protected]
-Phone: 703-534-8587
-Fax: 703-534-7759
-US Postal: Transplant Awareness Inc.
P.O. Box 7634
Arlington, Virginia 22207

Other Organizations Offering Financial Services (not in the Stadtlander's list)
-------------------------------------------------------------------------------

AMERICAN SHARE FOUNDATION
-------------------------
from John S. Abbott <[email protected]> (1/6/95):

(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.

Children's Liver Association for Support Services
-------------------------------------------------
Dedicated to addressing the emotional, educational and financial
needs of families with children afflicted with all types of liver
disease. We incorporated in September, and received federal tax
exempt status in November. We published our first newsletter in
October, and hosted a Holiday Children's party in December where 72
children and their families enjoyed visits from Mickey, Minnie and
Santa. Please contact us if you would like to receive our next
quarterly newsletter, or would like more information in general.

Diane Sumner
President
(805)-255-0353
[email protected]

The Transplant Educational Foundation
-------------------------------------
PO Box 12768
Pittsburgh, PA 15241
(800)44-TEF-KIDS
[email protected] (Denise Heidenreich)

The Transplant Educational Foundation (TEF) is a nonprofit organization
that provides education, information, and assistance to families with
children who have experienced, or are in need of organ transplant surgery.
TEF provides services such as: Family support services that include a
sibling support program, family networking through the TEF newsletter,
and the TEF family directory. Educational materials regarding
transplantation are also available. TEF provides direction about medical
and non-medical related financial issues and relocation assistance when
possible.

UNOS pamphlets
--------------
Text versions of the brochures "Questions a patient should ask", and
"What every patient needs to know" are available at:
gopher://info.med.yale.edu:70/11/Disciplines/Disease/Transplant/UNOSbrochure
See UNOS entry in Part 2, section II for information on receiving hard
copy versions from UNOS.