Resources to Help | Aplastic Anemia and MDS International Foundation

Resources to Help

A list of resources that may be helpful to patients with aplastic anemia, MDS or PNH.

Financial Assistance

Alexion One Source Program 
(888) 765-4747
Assists patients who have been prescribed Soliris (eculizumab) by connecting them to alternate funding sources and by getting their insurance company to process claims. They also offer several other services.

Amgen - Reimbursement Connection Program
(800) 272-9376
Amgen makes the drugs Aranesp, Neulasta, Neupogen, Nplate and Epogen. The program offers patient assistance with a variety of programs. The Web site also includes guides to insurance verification, patient assistance and billing, and claims support.

BMT InfoNet 
(847) 433-3313
(888) 597-7674
The BMT InfoNet Patient Assistance Fund provides financial support to transplant patients and their families during a time of financial crisis.

Bone Marrow Foundation (BMF)
(800) 365-1336
Patient aid program provides coverage for many costs associated with bone marrow transplant.  Grants are limited to specific institutions, so speak with hospital social worker or contact BMF for more information.

Celgene - Patient Support Coordinator
(800) 931-8691
Celgene's central point of contact for questions about their products, including Revlimid and Vidaza. Patients can ask questions about insurance reimbursement and underinsured patients may be able to receive free medication.

Children's Leukemia Foundation of Michigan
(248) 530-3000
Offers financial and emotional support for Michigan residents with blood and bone marrow disorders.

Children's Organ Transplant Association (COTA)
(800) 366-2682
Provides fundraising assistance for children & young adults needing bone marrow transplants. 

Good Days (Formerly known as Chronic Disease Fund)  
(877) 968-7233
Good Days provides financial assistance to patients suffering from chronic Iron Overload and MDS who need specialty medications. Good Days realizes that a patient’s struggle can go beyond simply having access to their medication. Provides financial and logistical support to patients to travel to see a specialist through their travel assistance program.

First Hand Foundation
(816) 201-1569
Nonprofit foundation established by Cerner Corporation. Assists families of children, with health problems, address financial aspects of their child's healthcare.

Leukemia and Lymphoma Society
(800) 955-4572
Offers two programs to help patients pay for covered services. Patient Financial Aid program offers up to $150 per year to patients to help pay for approved drugs, blood and marrow transfusions, transportation costs to appointments, and x-ray therapy. Co-Pay Assistance Program can provide up to $5,000 to help patients, with insurance, pay out-of-pocket costs associated with treatment for MDS or another eligible disease. 

Leukemia Research Foundation
(888) 558-5385
Provides MDS patients who live within 100 miles of Chicago, or in the state of Illinois, with financial assistance, if qualified. Program reimburses almost any treatment-related expense not covered by medical insurance.

National Association of Counties - Caremark
(877) 321-2652
Your county may be able to provide you with a discount card that allows you to buy medications at a reduced rate at participating pharmacies. Advance Rx's Web site provides a list of counties that offer the card, instructions on requesting a discount card, and resources to find pharmacies where it can be used.

National Marrow Donor Program - Be the Match Foundation
(800) 627-7692 (General Information)
(888) 999-6743 (Office of Patient Advocacy)
Nonprofit organizations dedicated to creating an opportunity for all patients to receive bone marrow or umbilical cord blood transplant when needed.

National Organization of Rare Diseases (NORD) - Medication Assistance Program
(203) 744-0100 or (800) 999-6673 (voicemail only)
NORD works with pharmaceutical companies to ensure that vital medications are available to those in need. They currently offer a program to assist with premiums and co-pays for PNH patients.

National Transplant Assistance Fund
(800) 642-8399
Provides small grants, information and support for fundraising and patient awareness.

A nonprofit organization with the mission of helping people who cannot afford medicine or healthcare costs. Information is available anonymously and free.

Novartis - Patient Assistance Now Oncology (PANO)
Provides access to Exjade through a special distribution system. Other financial/claims assistance may be available.

Ortho Biotech - ProcritLine
(800) 553-3851
Ortho Biotech makes the drugs Procrit and Leustatin. Offers patient assistance program and benefit verification program. Additional services available over the phone. Forms for patient assistance and benefit verification are available for download.

Partnership for Prescription Assistance
(888) 477-2669
Single point of access to more than 275 public and private patient assistance programs, including more than 150 offered by pharmaceutical companies.

Patient Access Network Foundation
(866) 316-7263
Provides up to $7,500 per year to MDS patients OR up to $10,000 per year for Iron Overload patients, who have insurance, but cannot afford out-of-pocket costs. Check eligibility requirements. An application is on their Web site or contact a counselor at the toll-free number.

Patient Advocate Foundation
Equal Access to Health Care
(800) 532-5274
Offers personal assistance to patients with MDS.  Through a personal case manager, they may be able to help you deal with your insurance company, as well as health-related problems with your employer or creditors.

PNH Research and Support Foundation 

The PNH Research and Support Foundation seeks to ensure that all PNH patients can see a PNH specialist to seek the best course of treatment. The Foundation may be able to provide financial aid up to $3,000 per eligible, US based PNH patient with demonstrated financial need. 

RX Assist - Volunteers in Health Care
(877) 844-8442
Maintains a database of resources for low-income patients to receive free or low-cost medications. National nonprofit organization.

Sanofi US Oncology - Leukine Reimbursement
(800) 321-4669 (Reimbursement Support Line)
Offers services including benefit verification, claims review and billing assistance. It can also offer access to treatment for uninsured patients who meet program criteria.

Together RX Access
(800) 444-4106
Provides a free card for discounts on more than 300 brand-name drugs, and some generic drugs, at participating pharmacies. There are income and other requirements, and you must be a legal resident of the U.S.

End of Life Resources is a community of caregivers facing the challenge of caring for an elderly loved one. They offer tips about how to cope when you know your elderly parent is dying soon.

Aging with Dignity is a national non-profit organization with a mission to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. Their Five Wishesmeets the legal requirements in 42 states and has helped literally millions of people plan for and receive the kind of care they want. Five Wishes is unique among all other advance directives and living wills because it is user-friendly and easy to complete.  Five Wishes is available in 27 languages and in Braille to address the needs of an ethnically and culturally diverse nation. Like the English version, translated versions of Five Wishesare written in easy-to-understand language. Each foreign language copy of Five Wishes carries a side-by-side English translation for medical providers and others who speak only English.

Caring Connections was created by the National Hospice and Palliative Care Organization to provide free, easy-to-understand resources on a variety of issues.

Children's Hospice International

(800) 4-2-CHILD;

Children's Hospice International provides care for children from the time of their diagnosis with a life-threatening condition with hope for a cure, through bereavement if a cure is not attained.

Dying Well—The Final Stage of Survivorship is the National Coalition for Cancer Survivorship’s toolkit. Dying Well is an informative, supportive, and reassuring program designed to teach you more about your choices and resources and what to expect during this last stage of survival. 

End-of-Life: Helping with Comfort and Care hopes to make the unfamiliar territory of death slightly more comfortable for everyone involved. This publication is based on research, such as that supported by the National Institute on Aging, part of the National Institutes of Health. This research base is augmented with suggestions from practitioners with expertise in helping individuals and families through this difficult time.

End-of-Life Issues and Care from the American Psychological Association highlights the role of psychologists in helping the dying and their loved ones. They can assess mood, mental functioning and pain; treat depression, anxiety and other mental health problems; provide end-of-life counseling to the dying and their families; and advocate for good medical care.

End-of-Life Issues from the American College of Physicians provides a set of tools that can help patients and families live well with serious illness near the end of life. These educational materials can be used to facilitate conversations between physicians, patients, and their families.

Hospice Foundation of America is a trusted source of information on end of life, hospice care and grief. Throughout this site you will find information about living with advanced life-limiting illness, options for care, and helpful resources for caregivers.

International Association for Hospice & Palliative Care

(866) 374 2472

Promoting universal access to high-quality palliative care, integrated in a continuum of care with disease prevention and treatment, to assure that no patient or family caregiver suffers unnecessarily.

Last Days of Life provides information about managing symptoms, ethical issues in end-of-life decisions, and grief and loss. As part of the National Cancer Institute's (NCI's) comprehensive cancer information database this Physician Data Query (PDQ®) is written in easy-to-understand, nontechnical language. Last Days of Life is also available in Spanish.

National Hospice and Palliative Care Organization is a nonprofit that provides information on hospice care for professionals, caregivers, and families. Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well. 

The NHPCO Helpline: (800) 658-8898

NHPCO's Multilingual HelpLine: (877) 658-8896

Hospice Net

This non-profit, Internet resource provides information and support to patients and families facing a life-threatening illness.

Palliative Care for Veterans

The Veterans Administration has joined forces with hospice organizations to better serve and meet the needs of its terminally ill veterans.

Pediatric My Wishes is a booklet written in everyday language that helps children express how they want to be cared for in case they become seriously ill. Like Five WishesMy Wishes also helps begin conversations among children, parents, and caregivers. My Wishes is not a legal document. Individual copies of Pediatric My Wishes can be purchased for $5.00 from the Aging with Dignity organization.

Spirituality in Cancer Care is another PDQ® from the National Cancer Institute's (NCI's) comprehensive cancer information database. Many patients with cancer rely on spiritual or religious beliefs and practices to help them cope with their disease. This is called spiritual coping. Many caregivers also rely on spiritual coping. Each person may have different spiritual needs, depending on cultural and religious traditions.

Voicing My Choices: A Planning Guide for Adolescents and Young Adults (and Spanish language Expresar Mis Deseos) helps young people living with a serious illness to communicate their preferences to friends, family, and caregivers. Voicing My Choices, based on findings in the journal, Pediatrics, recognizes the standard advanced care planning documents don’t meet all the needs of younger patients. This study found that adolescents and young adults living with a life-threatening illness want to be able to choose and record (1) the kind of medical treatment they want and do not want, (2) how they would liked to be cared for, (3) information for their family and friends to know, and (4) how they would like to be remembered.

Volunteer for Research

Matches volunteer patients who meet necessary criteria with appropriate research studies.