Insurance, Financial, Treatment, and Support Resources
If there is one thing we have come to realize during this experience, it's that everyone has been affected by cancer. It's a terrible thing and when it's someone in our very close circle (spouse, parent, sibling, child, close friend) it can be overwhelming the amount of things there are to do and the feeling of not knowing where to start can be intense. For anyone who knows someone with cancer there is always an immense feeling of helplessness and wanting to do something to help. That said, there are some amazing resources out there. Most didn't apply to our specific situation, but if even one could apply for someone else reading this then that's fantastic.
American Cancer Society
The following is from the American Cancer Society which is a wonderful and generalized site for all things cancer. There is information and links to more sites that are more cancer-specific, there are support groups for patients and caregivers alike, information on the latest clinical trials, etc.
The Hope LodgeEach Hope Lodge offers cancer patients and their caregivers a free place to stay when their best hope for effective treatment may be in another city. Not having to worry about where to stay or how to pay for lodging allows guests to focus on getting well. Hope Lodge provides a nurturing, home-like environment where guests can retreat to private rooms or connect with others. Every Hope Lodge also offers a variety of resources and information about cancer and how best to fight the disease.
There are currently over 31 Hope Lodges across the US. Call for more information: 1-800-227-2345
Getting help with insurance issuesUS Department of Health & Human Services
For the most up-to-date information on health care and insurance laws and how they might affect you
Cancer Legal Resource Center (CLRC)
Toll-free number: 1-866-843-2572 (may need to leave a number for a call back)
Provides free legal information about laws and resources for many cancer-related issues including health insurance issues, denial of benefits, and government benefits
Patient Advocate Foundation (PAF)
Toll-free number: 1- 800-532-5274
Works with the patient and insurer, employer and/or creditors to resolve insurance, job retention and/or debt problems related to their diagnosis, with help from case managers, doctors, and attorneys. For cancer patients in treatment or less than 2 years out of treatment
Medicare Rights Center (for those with Medicare)
Toll-free number: 1-800-333-4114
This service can help you understand your rights and benefits, work through the Medicare system, and get quality care. They can also help you apply for programs that help reduce your costs for prescription drugs and medical care, and guide you through the appeals process if your Medicare prescription drug plan denies coverage for drugs you need
Income sources and money management
Social Security Administration (SSA)
Toll-free number: 1-800-772-1213
Has general information, qualification criteria, and information about how to apply for program benefits (such as Social Security Disability Income and Supplemental Security Income if you cannot work). Makes referrals to local SSA and Medicare/Medicaid offices
TANF and State Health Departments – US Department of Health and Human Services
Toll-free number: 1-877-696-6775
Provides contact information for each state’s health department, including Temporary Assistance for Needy Families (TANF) in your state
Financial Planning Association
Offers free information on personal finance, answers general financial planning questions, makes referrals to FPA members who are Certified Financial Planners™, and sets up free financial planning services to qualified people and families in need
Internal Revenue Service
Toll-free number: 1-800-829-1040
Has answers to tax questions, tax forms, and referrals to free tax help for those who qualify
*Inclusion on these lists does not imply endorsement by the American Cancer Society.
No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at 1-800-227-2345 or visit www.cancer.org.
The following above from the ACS is located here.
Leukemia & Lymphoma SocietyThe Leukemia and Lymphoma Society is clearly specific to blood cancers, but has some great info on clinical trials going on regarding blood cancers, information specific to the many different kinds of blood cancers and common treatment information, co-payment assistance, links to other sites of assistance, support groups both in person and online, etc. Each underlined resource is also hyperlinked to their websites.
Population served: Patients in need of financial help for a stem cell transplant
Mission: To enable patients and families to use community-based fundraising to meet uncovered medical expenses related to transplantation or catastrophic injury
Will work to raise funds on behalf of a patient with blood cancer when there is a possibility for a marrow/stem cell transplant as treatment
Also provides direct financial assistance: incentive grants (to recognize fundraising progress); emergency grants (one-time assistance for eligible patients).
Icla da Silva Foundation
Population served: Those in need of a stem cell transplant or anyone looking to be a bone marrow donor
Other language(s): Spanish, Portuguese
Mission: To save lives by recruiting bone marrow donors and by providing support services to children and adults with leukemia and other diseases treatable by marrow transplants.
National Foundation for Transplants (NFT)
Population served: Patients needing tissue, bone marrow or other transplants, and their loved ones, in the U.S.
Other language(s): Spanish
Mission: To empower transplant patients to create futures with hope; to help patients and their loved ones obtain financial assistance for medical expenses.
Offers fundraising assistance and guidance along the way
Each patient may have a personal page on the NFT website, allowing donors to learn about the patient's story and easily make a donation
Provides extensive media outreach on behalf of the patient.
National Marrow Donor Program and Be The Match (NMDP)
Contact: 888-999-6743; outside of the United States call 612-362-3410
Population served: Patients in need of bone marrow and/or cord blood transplants, worldwide
Mission: Provides assistance to people in need of a bone marrow/umbilical cord blood transplants; and is dedicated to creating an opportunity for all patients to receive a transplant when they need it. NMDP operates the Be The Match Registry®, the world's largest listing of potential marrow donors and donated cord blood units.
Be The Match Foundation Patient Assistance Program, for patients who pursue a transplant through Be The Match®, may be eligible for financial aid programs to help pay for the cost of a donor search and for some post-transplant expenses
Provides an extensive collection of education materials, webcast presentations
Be The Match Patient Services has a team dedicated to helping you learn about marrow and cord blood transplant as a treatment option, the overall transplant process, and what to expect after transplant
Peer Connect Program puts a patient/caregiver in touch with one of NMDP's trained volunteers - who are transplant recipients and caregivers - to answer questions and share their own transplant experiences.
The Caregiver's Companion Program- combines a useful toolkit with the personalized, confidential support of a caregiver coach who understands transplant and the caregiver role.
Receive a toolkit that includes the Caregiver's Companion book with tips, ideas and stories from other caregivers
Be paired with a trained Be The Match® coach who will work with your schedule to find a time that's best for you to talk by telephone.
The Bone Marrow Foundation (BMF)
Contact: 212-838-3029 or 800-365-1336
Population served: Transplant patients and families, caregivers, survivors
Mission: To improve the quality of life for bone marrow, stem cell, and cord blood transplant patients and their families by providing vital financial assistance, emotional support, and comprehensive educational programs.
-Patient Aid Program provides funding to help cover the costs of donor searches, compatibility testing, bone marrow harvesting, medications, home and child care services, medical equipment, transportation, cord blood banking, housing costs and other expenses associated with the transplant
-One-to-One Fund is a personal fund created for a specific patient. BMF administers and maintains the Fund, and can offer support with fundraising ideas.
-Lifeline Project will post the patient's photo and story on a webpage so people can donate money directly to the patient to help cover costs associated with the transplant.
-Offers resource listings and list of transplant centers in the U.S.
-Provides SupportLine - a free service that connects patients and caregivers undergoing a transplant with patients and caregivers who are post-transplant
-Offers Ask the Expert - a question-and-answer service where patients can email questions to health professionals about bone marrow and stem cell transplantation
-Survivorship Program provides resources that can address the needs of all bone marrow, stem cell, and cord blood transplant survivors, their families, and caregivers. Includes online discussion forum and NYC-based in person support group
-Provides publications about transplantation and related topics.
Andrew McDonough B+ Foundation
Population served: Families of children with cancer in the U.S.
Mission: To fund research to find cures for childhood cancers and advancements in chemotherapy; to provide emotional support and financial assistance nationwide for families of children with cancer.
Provides grants to minimize the financial hardship that is directly attributable to the child's illness; application form available on website.
Children's Leukemia Research Association (CLRA)
Population served: Children and adults with leukemia in the U.S., professionals
Mission: To support research efforts towards finding the causes and cure for leukemia.
Limited funds to assist with the costs of outpatient chemotherapy, lab tests and post-transplant prescriptions. Applications are mailed in November each year for assistance in January on a first-come, first-served basis
Offers matching dollar program, matching up to $1,500 per year in donations raised by applicant, family or friends during a specific time period
Funds grants for doctors conducting promising research about leukemia.
The above from the LLS is found here.
Based in NY many of the assistance programs are based on the east coast and I believe some for the San Diego area in Ca, but if it works for someone it was worth mentioning I thought. They also provide counseling services for caregivers and patients/survivors, here.