M
Michael Hollowa
Guest
Archive-name: medicine/transplant-faq/part3
Part 3 of bit.listserv.transplant FAQ
Last updated 4/11/01
Updated contact information for Aventis and Pfizer in Part 3, section I, as per corrections provided
by Bob Finn.
Contents
I. National Transplant Patient Resources Directory
J. Other Resources
K. Other companies offering pharmaceutical delivery services
L. Additional drug payment assistance
M. Financial and travel assistance
N. Medicare drug cost coverage
O. Additional government programs of interest
P. 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
---------------------------------------------------------------------------
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.
Q. 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.
R. 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. (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.
--------------------------------------------------------------------------
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
- 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 CARDIZEM Aventis 800-552-3656 DILANTIN Pfizer 800-438-1985 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)
---------------------------------------------------------------------------
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.
-------------------------------------------------------------------------
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.
--------------------------------------------------------------------------
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
===================
IJ. 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
IJ.A. 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®.
IK. 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
09/m/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
12/m/94 07/31/95 01/1/96 01/31/96 19
12/n/94 08/31/95 01/l/96 02/29/96 20
12/o/94 09/30/95 01/1/96 03/31/96 21
12/p/94 10/31/95 01/1/96 04/30/96 22
12/q/94 11/30/95 01/1/96 05/31/96 23
12/r/94 06/30/96 24
12/s/94 07/31/96 0l/l/97 01/31/97 25
12/t/94 08/31/96 0l/l/97 02/28/97 26
12/u/94 09/30/96 0l/l/97 03/31/97 27
12/v/94 10/31/96 0l/l/97 04/30/97 28
12/w/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
02/m/95 08/31/97 01/l/98 02/29/98 32
02/n/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
06/m/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.
f.A. 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)
f.B. 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
(806)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.
_________________________________________________________________
Get your FREE download of MSN Explorer at http://explorer.msn.com
Part 3 of bit.listserv.transplant FAQ
Last updated 4/11/01
Updated contact information for Aventis and Pfizer in Part 3, section I, as per corrections provided
by Bob Finn.
Contents
I. National Transplant Patient Resources Directory
J. Other Resources
K. Other companies offering pharmaceutical delivery services
L. Additional drug payment assistance
M. Financial and travel assistance
N. Medicare drug cost coverage
O. Additional government programs of interest
P. 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
---------------------------------------------------------------------------
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.
Q. 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.
R. 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. (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.
--------------------------------------------------------------------------
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
- 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 CARDIZEM Aventis 800-552-3656 DILANTIN Pfizer 800-438-1985 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)
---------------------------------------------------------------------------
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.
-------------------------------------------------------------------------
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.
--------------------------------------------------------------------------
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
===================
IJ. 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
IJ.A. 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®.
IK. 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)728-0317D. 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
09/m/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
12/m/94 07/31/95 01/1/96 01/31/96 19
12/n/94 08/31/95 01/l/96 02/29/96 20
12/o/94 09/30/95 01/1/96 03/31/96 21
12/p/94 10/31/95 01/1/96 04/30/96 22
12/q/94 11/30/95 01/1/96 05/31/96 23
12/r/94 06/30/96 24
12/s/94 07/31/96 0l/l/97 01/31/97 25
12/t/94 08/31/96 0l/l/97 02/28/97 26
12/u/94 09/30/96 0l/l/97 03/31/97 27
12/v/94 10/31/96 0l/l/97 04/30/97 28
12/w/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
02/m/95 08/31/97 01/l/98 02/29/98 32
02/n/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
06/m/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.
f.A. 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)
f.B. 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
(806)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.
_________________________________________________________________
Get your FREE download of MSN Explorer at http://explorer.msn.com