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Resources for Patients & Families

The following information and resources was provided to AOSW by CancerCare and their 'Helping Hand' resource book. We are grateful for their assistance.

Blood and Marrow Transplantation

Be The Match
Be The Match helps patients with leukemia, lymphoma and other diseases who need a marrow or umbilical cord blood transplant. People can join the Be The Match Registry – the largest listing of potential marrow donors and donated cord blood units. Patients and their families can also turn to Be The Match for support and resources before, during and after transplant. Be The Match is operated by the National Marrow Donor Program (NMDP), a nonprofit organization that matches patients with donors, educates health care professionals, and conducts research so more lives can be saved.

Blood & Marrow Transplant Information Network (BMT InfoNet)
Blood & Marrow Transplant Information Network (BMT InfoNet) is a leading patient advocacy organization for persons undergoing a bone marrow, peripheral blood stem cell or cord blood transplant.  Founded in 1990 by a bone marrow transplant survivor, BMT InfoNet’s mission is to:

  • Provide patients, survivors and their loved ones with high quality, easy-to-understand information about bone marrow, peripheral blood stem cell and cord blood transplantation
  • Empower patients with credible information and emotional support, so that they can take a more active role in decisions affecting their health and treatment
  • Support patients and their loved ones before, during and after transplant

Serving patients both nationally and internationally, BMT InfoNet’s programs help more than 10,000 patients annually.

General Cancer Organizations & Resources

American Cancer Society
800-ACS-2345

Focuses on cancer research, education and advocacy: also provides patient and family services, which vary by locality. Signature patient programs offered nationwide include: teaching women undergoing cancer treatment how to use make-up to camouflage appearance-related side effects; a peer support program that connects breast cancer survivors with women who are newly diagnosed with the disease; and a peer support and educational program for men dealing with prostate cancer.

CancerCare
800-813-HOPE

National nonprofit organization that provides free professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones and the bereaved. Programs - including counseling, education, financial assistance and practical help - are provided by trained oncology social workers and are completely free of charge.

Cancer Support Community
888-793-9355

CSC is a global network offering face to face and online emotional support, education and hope for anyone affected by cancer. Through professionally led support groups, educational workshops and mind/body programs we help people learn vital skills, regain control, reduce feelings of isolation and restore hope.

Imerman Angels
Imerman Angels partners anyone seeking cancer support with someone just like you - a 'Mentor Angel.' A Mentor Angel is a cancer survivor or caregiver who is the same age, same gender, and most importantly, who has faced the same type of cancer. Imerman Angels is absolutely free and helps anyone touched by any type of cancer, at any cancer state legel, at any age, living anywhere in the world. 

These one-on-one relationships give a cancer fighter or caregiver the chance to ask personal questions and get support from someone who has been there before. Mentor Angels can lend support and empathy and help cancer fighters and caregivers navigate hte system, determine their options, and create their own support systems. Frequently, caregivers experience feelings similar to those of the person facing cancer. Mentor Angels can relate while being sensitive to the experience and situation. 

Lance Armstrong Foundation
The Lance Armstrong Foundation helps survivors face the challenges and changes that come with cancer. We help you understand what to expect from the cancer experiences and help you know the right questions to ask, and we provide support along the way. Visit www.LIVESTRONG.org/CancerSupport for educational resources and one-on-one support.

National Cancer Institute (NCI)
800-4CANCER

Information specialists from the National Cancer Institute (NCI) can answer questions about cancer, help with quitting smoking, provide informational materials, and help using the NCI website. The NCI website provides comprehensive information on cancer prevention, diagnosis, treatment, statistics, research, clinical trials and news. Click here to view fact sheets addressing many different topics. Click here to view a specific fact sheet that outlines cancer-specific supportive organizations.

WhatNext.com
WhatNext is a free online cancer support network, developed with the participation of the American Cancer Society, that instantly connects people fighting cancer - based on their specific diagnosis - to peers and resources that can help. Cancer patients, caregivers, survivors and loved ones are asking questions and providing insight, as well as sharing their journeys and experiences as a way to help those who are newly diagnosed know what they might expect.

Caregiver Resources

Caregiver Resource Directory
This is a practical guide intended to help family caregivers feel less alone and overwhelmed. It offers resources, facts, and advice about caring for a loved one, as well as the caregiver. This resource guide can be downloaded.

Lotsa Helping Hands
Powers free online caring communities that provide tools to organize daily life during times of medical crisis or caregiver exhaustion. We host more than 60,000 Private Communities that are hard at work supporting caregivers across the U.S., and we've recently launched an Open Community model to connect caregivers, individuals, and families who need help with those who want to lend a helping hand.
More information here

National Alliance for Caregiving
Is dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregivers.

National Family Caregivers Association
800-896-3650

Educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age.
 

Caregiver Companion Program
The Caregiver’s Companion Program is a free program for caregivers of blood & marrow transplant patients that combines a useful toolkit with the personalized, confidential support of a caregiver coach who understands transplant and the caregiver role. When you enroll in the program, you will receive a toolkit and be paired with a trained Be The Match® coach who will work with your schedule to find a time (about once a week) that’s best for you to talk by telephone.

Children's Resources

National Children’s Cancer Society
800-5-FAMILY

The National Children's Cancer Society provides direct financial assistance for medical and non-medical expenses related to treatment for children with cancer, including: bone marrow transplantation, cancer treatments, meals during treatment, health insurance premiums, lodging, pharmaceuticals and transportation.

Entitlement Organizations

Independent Living Centers
These are private, nonprofit agencies that provide services to maximize the independence of individuals with disabilities. Primary services include: disability rights advocacy, peer support, resource information and referral, housing advocacy, independent living skills consultation and government benefits information and advocacy.

Social Security Administration
800-772-1213

Pays retirement, disability and survivors benefits to workers and their families and administers the Supplemental Security Income program.

Financial Resources

Catholic Charities USA
The mission of Catholic Charities agencies is to provide service to people in need, to advocate for justice in social structures, and to call the entire church and other people of good will to do the same.

Lifeline
Link provides state specific info. Lifeline reimburses telephone companies for discounting consumers’ monthly phone bills. Suspension or shutoff can be postponed for 30 days if client cannot pay bill and anyone in household is ill and may need telephone service to call for an emergency medical assistance, as long as your doctor or local Board of Health notifies the utility. After the 30 days are up, further extensions may be granted, as long as your doctor or local Board of Health certifies that the condition still exists and you show that you still cannot pay the bill.

United Way
Search for local office by zip code

Hospice Resources

National Hospice and Palliative Care Organization (NHPCO)
800-658-8898

Can search for a local hospice provider. Website provides educational materials.

Insurance

HealthCare.gov

insureUStoday
A collaborative effort of health care stakeholders seeking to make it easier for consumers to access the benefits of health care reform.

Cancer Insurance Checklist
Designed to help you when shopping for insurance on your state’s Health Insurance Marketplace/Exchange if you have cancer, a history of cancer, or are at risk for cancer.

Bureau of Primary Health Service
Can search for facilities providing primary care to underserved populations.

Georgetown University Health Policy Institute
Georgetown University Health Policy Institute has written “A Consumer Guide for Getting and Keeping Health Insurance" for each state and the District of Columbia. Outlines options for clients in a comprehensive guide.

Patient Advocate Foundation
866-512-3861
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to medical care, maintenance of employment and preservation of financial stability.

Legal Assistance

American Bar Association
National directory of pro bono programs

LawHelp.org
LawHelp helps low and moderate income people find free legal aid programs in their communities, and answers to questions about their legal rights. Able to search by zip code for legal assistance for many different issues.

Medicare - Finding Information About Medicare

Making decisions about Medicare coverage can feel overwhelming. The following websites are designed to give impartial information to help you make a more educated choice that fits your needs. If you are undergoing cancer treatment or caregiving for someone with cancer, you might also ask your treatment center's oncology social worker for assistance.

1. State Health Insurance Assistance Program (SHIP)
A national program that offers counseling and assistance to people with Medicare and their families. To find the SHIP that services your area, you can use the SEARCH on medicare.gov:
http://www.medicare.gov/contacts/organization-search-criteria.aspx

or the SHIPtalk website:
https://www.shiptalk.org/Public/home.aspx?ReturnUrl=%2fdefault.aspx

2. Kaiser Health News, Open Enrollment Questions
http://www.kaiserhealthnews.org/Stories/2010/November/10/Michelle-Andrews-questions.aspx

3. 2011 Medicare Handbook
http://www.medicare.gov/Publications/Pubs/pdf/10050.pdf

4. Medicare's 8 things you should know when choosing/changing your policy
http://www.medicare.gov/new-to-medicare/choosing-or-changing-coverage.aspx

5. Center for Medicare & Medicaid toolkit site
http://www.cms.gov/center/openenrollment.asp (see "My Medicare Tools" on right hand side)

Pain Management Resources

The American Pain Foundation
888-615-PAIN

Mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.

Prescription Assistance

NeedyMeds.org
Site contains the latest, most accurate information on pharmaceutical assistance programs available.

Partnership for Prescription Assistance
888-477-2669

Mission is to increase awareness of patient assistance programs and boost enrollment of those who are eligible. Through this site, the Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies.

RxAssist.org
Click on “Search Programs” button to find information on patient assistance programs.

Other Co-Pay Assistance Programs

Check the websites for eligibility – funding is for specific conditions and is limited.

Healthwell Foundation
800-675-8416

Addresses the needs of individuals who cannot afford their insurance copayments, premiums, coinsurance, or other out-of-pocket health care costs.

Patient Access Network Foundation
866-316-7263

Assists patients with specific conditions who cannot access the treatments they need due to out-of-pocket health care costs including deductibles, copayments, and coinsurance.

Patient Advocate Foundation?s Co-Pay Relief Program
866-512-3861

Provides direct co-payment assistance for pharmaceutical products to insured patients (including Medicare Part D beneficiaries) who financially and medically qualify.

Patient Services Incorporated (PSI)
800-366-7741

Assists patients with chronic medical illnesses in accessing health insurance (COBRA) and pharmacy co-payment assistance.

Support Groups/Counseling

American Psychosocial Oncology Society
866-276-7443

Offers a toll-free hot line for cancer patients and advocacy organizations to obtain referrals for local counseling and support services throughout the United States. The referral program aims to connect patients or patient advocacy organizations to psychiatrists, psychologists, nurses, and social workers skilled in the management of cancer-related distress. The helpline voice-mail is monitored three times each business day. An APOS member will call within two business days to assist with a referral. Also offers an online directory.

CancerCare
800-813-HOPE

National nonprofit organization that provides free professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones and the bereaved. Programs - including counseling, education, financial assistance and practical help - are provided by trained oncology social workers and are completely free of charge.

Lance Armstrong Foundation LIVESTRONG SurvivorCare
LIVESTRONG SurvivorCare is the Lance Armstrong Foundation's one-on-one support program through which cancer survivors can get counseling and referrals to local resources, address financial, insurance and employment issues and connect to new treatments in development. To speak to a case manager, call LIVESTRONG SurvivorCare toll-free at 866.235.7205 or visit www.livestrong.org/survivorcare to submit a request for help online.

Survivorship

Lance Armstrong Foundation
Through the Lance Armstrong Foundation's online education resource at www.LIVESTRONG.org/CancerSupport, cancer survivors can learn about their cancer-related concerns, such as the physical and emotional effects of cancer and its treatment and managing day-to-day matters. In addition, survivors can download worksheets to organize and guide their cancer experiences and hear stories shared by other cancer survivors.

The National Coalition for Cancer Survivorship
877-NCCS-YES

Is the oldest survivor-led cancer advocacy organization in the country and a highly respected authentic voice at the federal level, advocating for quality cancer care for all Americans and empowering cancer survivors.Click here for information on the Cancer Survival Toolbox.

Transportation and Lodging

Angel Flight West
(888) 4AN-ANGEL
(888) 426-2643
www.angelflightwest.org

Angel Flight West (AFW) arranges flights, at no cost to passengers, covering 13 Western States, when travel by land or commercial airline would be a physical or financial hardship. Other situations include, but are not limited to, a compromised immune system or living in a remote area without access to commercial transportation. These flights are generally provided by private pilots who donate all of their time and the cost of flying their aircraft. There is never a charge for an Angel Flight mission.

If you live outside of the 13 western states, please go to http://aircharitynetwork.org/ or call 877-621-7177, to reach an Angel Flight office in your area. Download the information here.

Joe’s House
877-563-7468

The mission of Joe’s House is to be a housing resource for cancer patients and their families who must travel away from home for medical treatment. As such we have designed a site that lists cancer treatment centers and lodging facilities.

National Association of Hospital Hospitality Houses
800-542-9730

Association of more than 150 nonprofit organizations located throughout the U.S. that provide lodging and support services to families and their loved ones who are receiving medical treatment far from their home communities.

National Patient Travel Helpline
800-296-1217

Patients often use this HELPLINE to learn how they can obtain travel help for repeated trips back and forth to distant specialized care. Patients may make multiple trips and there is no age limit. Physician will be asked to sign a form indicating that the travel is for essential and necessary medical care.

Definition of Cancer-Related Terms

Disclaimer: AOSW makes no representations or warranties, expressed or implied. Providing references to other organizations or links to other websites does not imply that AOSW endorses the information or services provided by them. Those organizations are solely responsible for the information they provide.

Please feel free to email info@aosw.org with changes, comments, or suggestions.