Collection of Internet/Collection of Internet.iso/faq/sci/medicine/transpla/part2

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Path: bloom-beacon.mit.edu!hookup!news.kei.com!MathWorks.Com!europa.eng.gtefsd.com!howland.reston.ans.net!wupost!udel!newsserv.cs.sunysb.edu!ysics.physics.sunysb.edu!mhollowa
From: [e-mail] (Michael Holloway)
Newsgroups: bit.listserv.transplant,sci.med,sci.answers,news.answers
Subject: bit.listserv.transplant FAQ, Organ transplantation newsgroup (Part 2 of 2)
Followup-To: bit.listserv.transplant
Date: 31 Mar 1994 20:19:00 GMT
Organization: Institute For Theoretical Physics
Lines: 711
Approved: [e-mail]
Distribution: world
Expires: 04/30/94
Message-ID: <medicine/[e-mail]>
References: <medicine/[e-mail]>
Reply-To: [e-mail] (Michael Holloway)
NNTP-Posting-Host: csws2.ic.sunysb.edu
Summary: This is a description of the bit.listserv.transplant newsgroup
    and its parent mail list, TRNSPLNT.  Frequently asked
    questions regarding organ transplantation are addressed.
    A list of resources for transplantation patients is provided.
Originator: [e-mail]
Xref: bloom-beacon.mit.edu bit.listserv.transplant:679 sci.med:37273 sci.answers:1029 news.answers:17059

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

3/31/94

Part 2 of bit.listserv.transplant FAQ

The following is a list of financial and support resources that are
copied primarily from a pamphlet provided by Standtlanders Pharmacy
and The Transplant Foundation, with additional information from a
list provided by American Preferred Plan and people on the TRNSPLNT
mail list.  Inclusion of pharmacy companies here is not an
endorsement of their services.  In fact, it is recommended that
patients very carefully examine whether their services are worth the
added cost to your medication expenses.  The word on the TRNSPLNT
list is that they are convenient, but expensive.

If you know of any other agencies offering help for transplant patients
please send me the information or post to bit.listserv.transplant.

March, 1994
Mike Holloway
[e-mail]
==========================================================================
===============================================
National Transplant Patient Resources Directory
===============================================
provided by Stadtlanders Pharmacy and The Transplant Foundation
(with additional information from American Preferred Plan)

The Transplant Foundation

The Transplant Foundation is a national, non-profit volunteer organiza-
tion providing resource information and direct grants to post-transplant
recipients to offset the costs of immunosuppressive medications. The
number of individuals who can receive assistance and the grant
amounts are determined by total contributions received each year. The
Foundation serves as a clearinghouse for information as well as an advo-
cate for the rights of transplant recipients. For more information on The
Transplant Foundation call 800-285-5115.

Stadtlanders

At Stadtlanders we witness the miracle of transplantation everyday
through the 10,000+ transplant recipients we serve. As the first pharmacy
dedicated to serving the needs of the transplant community, Stadtlanders
provides individuals with medication delivery and insurance billing
services nationwide. The Social Services Department offers financial
and emotional counseling as well as resource information. To learn
more about Stadtlanders services call 800-238-7828.

American Preferred Plan

APP is the leading free membership organization delivering prescription
medications, directly to you home or office & providing linkages to
community resources & national support networks. Call your APP membership
specialist for a confidential planning consultation.  800-227-1195


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

Express Pharmacy Services.  800-826-8850

PO Box 94999
Birmingham, AL
35220-9989

CHRONIMED PHARMACY
                P.O. BOX 47945
                MINNEAPOLIS, MN.55447

 (THEY PUBLISH ENCORE MAGAZINE FOR ORGAN TRANSPLANT PATIENTS)

800-888-5753

HOMECARE MANAGEMENT, INC.
               80 AIR PARK DRIVE
               RONKONKOMA, N.Y. 11779

800-637-5633 (NY)
800-927-4642 (TX)
800-927-4643 (CA)
800-927-4644 (PA)
800-829-4645 (FL)
800-637-5633 (DC)

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                              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-Z72-1213.

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 overior 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.

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    Sandoz                800-447-6673
VASOTEC,PRILOSCEC
            Merck, Sharp & Dome        800-637-2579
ZANTAC        Glaxo                800-452-9677
MICRONASE        Upjohn                [phone]
* Abbott Laboratories/Ross Laboratories, [phone], [phone]
* Adria  Laboratories Inc.  [phone]
* Allegan 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]
* Johnston & Johnston (Ortho Biotechnology) [phone]
* Johnston & Johnston (Janssen Pharmaceuticals) [phone]
* Eli Lily and Co.  [phone]
* Norwich-Eaton [phone]
* Pfizer Pharmaceuticals [phone]
* Sanoll 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]

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pg. 5

====================================================================
National Resources
Educational Information, Financial Grants, Fundraising Information,
Medication Grants
====================================================================

Listed in alphabetical order are agencies that may offer assistance with
educational information, financial grants, fund raising information, and
medication grants.

Please refer to the Resources by Category guide on page 10 of this
directory to quickly determine which agencies offer the resource you
need.

In addition, the following letters are noted after each agency name to
indicate resources offered:

            E - Educational Information
                        F - Financial Grants
                        FR - Fundraising Inforination
                        M - Medication Grants


AMERICAN ASSOCIATION OF KIDNEY PATIENTS (E)

111 S. Park Street, Suite 405
Tampa, Florida 33606
800-749-2257

Purpose is to promote the welfare of kidney patients through education
and advocacy. Self-help and patient education are key elements of local
chapter activities.


AMERICAN CANCER SOCIETY (E, M)

1599 Clifton Road
Atlanta, Georgia 30329
800-227-23g5

Non-profit health organization that supports education and research in
cancer prevention, diagnosis, detection and treatment, with special
services available to cancer patients. Some chapters offer limited
medication grants.


AMERICAN DIABETES ASSOCIATION (E)

1660 Duke Street
Alexandria, Virginia 22314
800-232-3472

Non-profit health organization that provides the general public,
diabetics, and health-  care professionals with educational support
including books, literature and seminars.

----------------------------------------------------------------------
pg. 6


AMERICAN HEART ASSOCIATION (E)

7272 Greenville Avenue
Dallas, Texas 75231-4596
800-AHA-USA1/800-242-8721

Callers are routed to a local American Heart Association office and can
obtain infor- mation about heart disease and the type of support services
available in local area. Also, callers can receive a free brochure,
"About Heart Transplants."


AMERICAN KIDNEY FUND (ELF)

6110 Executive Boulevard, Suite 1010
Rockville, Maryland 20852
800-638-8299

Non-profit health organization that provides limited grants to needy
dialysis patients, transplant recipients and donors to help cover the
cost of health-related expenses, transportation, medications, etc.
Provides information and support for kidney donation and transplantation
as well as general education and information on kidney diseases.


AMERICAN LIVER FOUNDATION (E, FR)

1425 Pompton Avenue
Cedar Grove, New Jersey 07009
800-223-0179

Voluntary agency dedicated to fighting liver disease through research,
education and patient self-help groups. Provides fund raising information
and will act as trustee for monies raised.


AMERICAN LUNG ASSOCIATION (E)

1740 Broadway
New York, New York 10019
800-LUNG-USA/800-586-4872

Non-profit, voluntary health organization that offers information to
people considering lung transplant, and to those individuals who are at
any point in the lung transplant process. Callers can receive a fact
sheet on lung transplantation and a list of trans- plant centers
nationwide. This association can provide referrals to local support
groups, as well as contacts with other people who have had a lung
transplant or are waiting for a transplant.

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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)

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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

This organization manages a drug cost share program for individuals who
cannot afford Sandimmune (cyclosporine). To inquire about the
application process, call 800 447-6673 or 203-746-8958. Allow 8-10 weeks
for eligibility to be determined.

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


ORGAN TRANSPLANT FUND, INC. (FR, M)

National Office
1027 South Yates Road
Memphis, Tennessee 38119
800489-3863

Offices located in selected states.

Assists candidates/recipients nationwide in obtaining transplants and
after care, as well as providing essential support and referral services.
Provides clients with fund raising expertise and materials and assures
that funds raised are properly dispersed. Limited emergency grants
available for medications of not longer than 3 months duration.
Administrative fee collected.

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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

        244 North Bellefield Avenue
        Pittsburgh, PA 15213
        412-487-2210

TRIO is an independent non-profit international organization committed to
improving the quality of life of transplant candidates, recipients, and
their families. TRIO, through a network of local chapters, serves its
members in the areas of support, advocacy, awareness and education. TRIO
awards $1,000 scholarships annually to transplant recipients wishing to
pursue post-secondary education. Clearinghouse for educational materials.
Referrals made to local chapters.

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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
JWENILE DIABETES FOUNDATION INTERNATIONAL.                7
THE NATIONAL HEART ASSIST AND TRANSPLANT FUND                7
NATIONAL KIDNEY FOUNDATION                        8
NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD), INC            8
THE TRANSPLANT FOUNDATION                        9
TRIO                                    9

FINANCIAL GRANTS

AMERICAN KIDNEY FUND                            6
THE NATIONAL HEART ASSIST AND TRANSPLANT FUND                7


FUNDRAISING

AMERICAN LIVER FOUNDATION                        6
AMERICAN ORGAN TRANSPLANT ASSOCIATION (AOTA)                7
CHILDREN'S ORGAN TRANSPLANT ASSOCIATION (COTA)                7
THE NATIONAL HEART ASSIST AND TRANSPLANT FUND                7
ORGAN TRANSPLANT FUND, INC.                        8


MEDICATION GRANTS

AMERICAN CANCER SOCIETY                            5
NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD), INC            8
ORGAN TRANSPLANT FUND, INC.                        8
PHARMACEUTICAL MANUFACTURERS ASSOCIATION                9
THE TRANSPLANT FOUNDATION                        9



If you are aware of any other national resources that you would like to
have reviewed for inclusion in the next printing of this directory,
please call Stadtlanders Social Services Department at 800-238-7828
and/or The Transplant Foundation at 804-285-5115. Thank you for any
resource information you are able to contribute.

We hope that this information is helpful to you but, by no means is this
an all inclusive list of resources. You are always encouraged to seek the
support and direction of the social worker at your medical facility.