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Caregiver Lifeline Program
Resources for Transplant Families

This document is a good starting point for identifying potential transplant-related resources for patients, their caregivers and families. We've included a variety of information about transplant, transplant fundraising resources, grant assistance providers, travel assistance, prescription coverage, and living donor support. Where to Start
The Gift of Life Family House website has a wide variety of educational, support group,
transplant, governmental, stress, fitness and nutrition, and caregiver resources under
"Resources" and under "Caregiver Lifeline Program." The Gift of Life Family House offers the
Caregiver Lifeline Program as a resource for all transplant caregivers, whether or not you stay
at The Family House. We're happy to help both before and after transplant. Many of these
resources will be helpful to patients and other family members as well.

Phone: 267-546-9800
Toll Free: 855-632-6459
The Gift of Life Donor Program provides great information about regional and national
resources to learn about transplant, support transplant families and patients, and suggest
volunteering opportuniti
The Transplant Living website, which is run by the United Network for Organ Sharing (UNOS), is
a great resource for patients and families new to transplant
Support Services at The Family House
The Family House Social Worker is available to help answer questions, provide support, and identify resources as you and your loved ones go through the transplant process. The Social Worker can answer questions about:  Travel, lodging, and medications  Household bills  Employment  Handling the wait before and after the transplant  Navigating the hospital system and working with your transplant team For more information, please call The Family House Social Worker at 267-546-9817, visit our website, or email at Caregiver Lifeline Program Insurance
If you have any questions about your specific plan, please contact The Family House Social Worker.  Medicare: Federal program with universal coverage. Covers 80% of transplant costs. You
may need an insurance supplement.  State Medicaid: May cover lodging and travel. Coverage varies, state to state.
Private Health Insurance: Coverage varies, but be sure to ask for your insurance's
Transplant Case Manager. Questions to ask your private health insurer: o Is my transplant center in-network with my insurance company? o If my transplant center is out-of network, do I have an out-of-network benefit for o What deductibles will apply? o What are my co-payments for doctor visits, hospitalizations and medications? o Does my plan require prior authorization? o Who needs to get prior authorization? o Does my plan have a lifetime maximum or "cap" for transplant services? o Do any pre-existing-condition requirements exist? The Transplant Living website provides a good overview. See "Before the Transplant" and select "Financing the Transplant." Transplant Fundraising
The costs of transplant vary, and patients typically use several sources to help pay for their medical and non-medical costs before and after transplantation. Fundraising is easier than you think. These organizations provide help and tools for getting started.  Help Hope Live
Phone: 800-642-8399 Helps families and patients use community-based fundraising to meet uncovered medical expenses related to transplantation.  National Foundation for Transplants
Phone: 901-684-1697 Toll Free: 800-489-3863 NFT helps establish fundraising campaigns in patient communities.  Children's Organ Transplantation Association:
Phone: 800-366-2682 Helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.  Sink or Swim Philadelphia
Caregiver Lifeline Program Phone: 267-940-7462 Helps people who are staying in the Philadelphia area who are uninsured and underinsured with necessary medical expenses via Facebook and web donations.  Your community resources: Your church, school, community center, or a club can host
fundraisers. All you have to do is ask. There are a great number of grant resources, but they are organ-, disease- or state-specific. The Family House Social Worker is very knowledgeable about available options, so please consult with him or her first. Please note that many grants must be completed with a social worker. We suggest you start your online search with "grants for transplant patients" and add specifics. Selected Grants: The American Kidney Fund offers a Safety Net Grant (for Dialysis ESRD patients) that
helps dialysis patients who are in need of assistance with treatment-related expenses that insurance does not cover. Look under Patient Programs.  The American Liver Foundation has resources listings based on area and disease.
Queen of Hearts Foundation seeks to provide financial assistance to individuals and
families dealing with the stress, uncertainty and financial burden associated with the battle against cancer and illness in NJ and PA. Please Note: There are many other available grants, please see The Family House Social Worker for help. Travel Support
Please note that none of these services provide emergency flights. All flights must be coordinated ahead of time.  Patient Airlift Services (PALS) arranges volunteer medical flights and free air
transportation for needy individuals throughout the greater Northeast region, from Virginia to Maine, Ohio to Massachusetts. Phone: 631-694-7257  Air Care Alliance/Angel Flights has a directory of more than sixty groups with
volunteer pilots who will fly patients for care or provide other flights or aviation services to help those in need or serve our communities. Toll Free: 888-260-9707 Caregiver Lifeline Program  Air Charity Network is a charitable organization that provides access for people in
need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis. Toll Free: (877) 621-7177  Transplant Recipients International Organization Inc. (TRIO) United Airlines Travel
Program provides donated frequent flyer miles to donors or recipients who can
substantiate financial need.

Phone: 1-800-TRIO-386
Prescription Coverage Assistance
If you have any issues covering your medications or concerns about future coverage, immediately contact your Transplant Coordinator at the hospital.  If you have copays, some grants might help you cover these costs. Please reach out to The Family House Social Worker to see if there are resources for support.  Medicare Extra Help program for prescription costs. This program is available to
persons receiving Medicare, with limited resources and income, and residing in one of the 50 States or the District of Columbia.  The PA Department of Aging can link you to many different resources, including the
Pennsylvania Pharmaceutical Assistance Program for the Elderly (PACE).

 Many drug manufacturer offer patient assistance programs for prescribed immunosuppressive medications, which your Transplant Social Worker can help you access: o Abbott (Gengraf) o Astellas (Prograf) o Burroughs Welcome (Imuran and Zorvarax) o Novartis (Cyclosporine and Neoral) o Roche (Cellcept) Living Donors
Most living donors either donate a kidney or a liver segment. The Gift of Life Donor Program
has good information for living donors as do Transplant Living
and the U.S. Department of Health and Human Services
Caregiver Lifeline Program  National Living Donor Assistance Fund provides financial assistance (travel &
subsistence) to those who want to donate an organ. This grant must be applied for with a Transplant Social Worker  The Pennsylvania Department of Health (DOH) administers the Organ Donor Incidental
Expenses Family Benefit Plan (ODIEFBP). Provides reimbursement for certain incidental
expenses incurred by organ donors and/or family members, as well as ESRD patients.
This grant must be applied for with The Family House Social Worker. Under "Health
Services and Resources/Organ Donation Awareness"

Other Resources
Gift of Life Donor Program,
Family Caregiver Alliance
The United Network for Organ Sharing
Transplant Living,
For more information, please call The Family House Social Worker at 267-546-9817, visit our website, or email at Caregiver Lifeline Program


Palliative care guidelines

Palliative Care Guidelines: Introduction Introduction: Palliative Care Guidelines Third Edition Palliative care• aims to improve the quality of life of patients and their families facing the problems associated with any life limiting illness. • provides relief from pain and other distressing symptoms. • integrates the psychological and spiritual aspects of patient care. • offers a support system to help patients live as actively as possible until death. • offers a support system to help the family cope during the patient's illness and in their own