Tips and Resources

 

The following organizations offer information about financial, travel and housing assistance for cancer patients. Each organization has its own set of guidelines regarding approval for financial assistance.

Additional resource information about Lodging and Transportation can be found on this website in the Support section by clicking here.

NOTE: The Carcinoid Cancer Foundation does not give financial assistance to individuals, however we may be able to guide you to appropriate resources that will give financial help. We suggest you call us at 888-722-3132 to further guide you.

 

Financial Assistance

(February 1, 2007) HealthWell Foundation Launches New Program To Help Patients With Carcinoid Tumors

The HealthWell Foundation® offers assistance to patients diagnosed with carcinoid tumors and symptoms related to carcinoid tumors. The HealthWell Foundation is an independent, non-profit organization working to reduce barriers to medical care for patients with chronic or life-threatening diseases. The new program provides financial assistance to help underinsured patients afford their co payments and other out-of-pocket costs for treatments for carcinoid tumors and related symptoms.

"As patients continue to face rising out-of-pocket medical costs, the HealthWell Foundation is working to help reduce financial barriers to care,” said Stephen M. Weiner, President of the HealthWell Foundation. "We have assisted more than 23,000 patients in over 22 disease areas and are excited to expand our program to help patients with carcinoid tumors afford their medical treatments as well."

Additional information about the new carcinoid tumors program and the HealthWell Foundation is available online at www.healthwellfoundation.org.

American Cancer Society (ACS)

Managing Day to Day
Medical Insurance and Financial Assistance for the Cancer Patient

BenefitsCheckUp

Developed and maintained by The National Council on Aging (NCOA), BenefitsCheckUp is the nation's most comprehensive Web-based service to screen for benefits programs for seniors with limited income and resources.

BenefitsCheckUp includes more than 2,000 public and private benefits programs from all 50 states and the District of Columbia, such as: prescription drugs,nutrition (including Supplemental Nutrition Assistance (SNAP)/Food Stamps),energy assistance, financial, tax relief, in-home services, and transportation.
  

Cancer Care

"When you don't know where to turn", Cancer Care can help. If you or someone you know has just been diagnosed with carcinoid cancer—or has been living with carcinoid cancer for some time—you may have questions or need support. This web site define the five areas of service they offer for carcinoid cancer patients and their families.

Cancer Financial Assistance Coalition (CFAC)

CFAC is a coalition of financial assistance organizations joining forces to help cancer patients experience better health and well-being by limiting financial challenges. To find out if financial help is available, please search the CFAC database. You may also contact each CFAC member organization individually for guidance and possible financial assistance.

National Cancer Institute (NCI)

Financial Assistance for Cancer Care.
Cancer imposes heavy economic burdens on both patients and their families. For many people, a portion of medical expenses is paid by their health insurance plan. For individuals who do not have health insurance or who need financial assistance to cover health care costs, resources are available, including Government-sponsored programs and services supported by voluntary organizations.

Novartis -Patient Assistance Program (PAP)

Novartis is committed to providing access to our medications for those most in need through the Novartis Pharmaceuticals Corporation's Patient Assistance Program (PAP). PAP provides assistance to patients experiencing financial hardship who have no third party insurance coverage for their medicines. Click on the following link for more information: http://www.novartisoncology.us/patients-caregivers/pay-treatment/patient-assistance-program.jsp.

Prescription Assistance Programs (PAPs)

In this document prepared by the National Council on Patient Information and Education there is information about Eligibility and Enrollment Requirements, Steps in the Process, Other Discount Programs to Help Cut Costs, and Resources.

Read More

The Lois Merrill Foundation (LMF)

The Lois Merrill Foundation is a nonprofit organization founded in 2007 in honor of Lois Merrill who passed away in 2006 from carcinoid cancer. Lois was a devoted wife, mother and school teacher whose passion for life and sincere desire to help others lives on through The LMF. The mission of The Lois Merrill Foundation is to help people affected by carcinoid cancer through funding research for new treatments, providing financial support for patients and their families, and promoting awareness and education for carcinoid and other rare cancers.


For information about financial resources available to patients, click here: http://www.theloismerrillfoundation.org/wecanhelp.html. Medical assistance grants are based on financial need.

Due to the number of applications received, The Lois Merrill Foundation will only review applications ONE time per year.

Applications will be accepted starting on January 1 through April 15, 2015. Notification of awards, June 2015.

To read more about The Lois Merrill Foundation, visit their website at: http://www.theloismerrillfoundation.org.

Tips

Fatigue

The Cleveland Clinic has written up an excellent description about cancer related fatigue
To view Click here

Insurance and Travel for Rare Disease Treatment

Lucy Wiley, http://lucysnoidblog.blogspot.com, has an excellent tip for carcinoid/NET patients who need to travel.  Some insurance policies have a provision for anyone traveling to undergo an organ transplant or treatment for a rare disease.  The National Organization for Rare Disorders (NORD) lists carcinoid syndrome, pancreatic neuroendocrine neoplasms, and multiple endocrine neoplasia, among others, as rare diseases. When traveling to seek treatment to remove a liver tumor Lucy contacted her insurance company, was sent a form to complete, and was also required to submit original receipts within a certain timeframe.  She received over $1,000 from the insurance company.  Lucy advises:  “It pays to sit down in a quiet room with a pen and a pad of paper and read your policy word for word. But never forget you have the right to appeal any decision and there's a chance the matter will be decided in your favor. See my blog for a three-year ordeal with insurance payment related to PRRT.” For additional information about Lodging and Travel Resources, CLICK HERE

Disability Issues

Disability Insurance

Provided by the Cancer Legal Resource Center, this 9-page document about Disability Insurance (CLICK HERE for the downloadable PDF) provides information about Private Disability Insurance, State Disability Insurance, State Paid Family Leave, Federal Disability Insurance, Social Security Disability Insurance (SSDI),  and the SSI/SSDI Appeals Process.

Read more

Disability Rights Legal Center

The Cancer Legal Resource Center (CLRC) is a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles. The CLRC provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.

The CLRC has a national, toll-free Telephone Assistance Line (866-999-3752) where callers can receive free and confidential information about relevant laws and resources for their particular situation. Members of the CLRC's Professional Panel of attorneys, insurance agents, and accountants can provide additional assistance.

Read more

Having Problems Getting Disability?

Visit this this website to get tips on how to deal with this problem
Disability Secrets:
http://www.disabilitysecrets.com/what-disability-cases-win.html

The Social Security Disability Resource Center provides information on the federal disability benefit programs, SSD (Social Security Disability, mandated under Title II of the Social Security Act) and SSI (Supplemental Security Income, mandated under Title XVI), in addition to answering questions about Social Security retirement benefits and providing resource links on topics such as Medicare. Visit this website for more information: http://www.ssdrc.com.

Publications

CARCINOID CANCER, ZEBRAS & STARDUST

Full Text PDF
My sister's cancer battle

ABOUT THE BOOK: Carcinoid Cancer, Zebras and Stardust by Mary Girsch-Bock is the story of one person's relentless battle against carcinoid, and of the author's struggle to come to terms with the death of her beloved sister. Inside, you'll also find the words of some of the world's top carcinoid specialists, invaluable reference data, and a comprehensive list of the top carcinoid specialists.
A portion of the proceeds from every order of this special edition will be donated to support the programs and activities of The Carcinoid Cancer Foundation.
For more information and to order click HERE

Rollercoaster

by Wayne Tefs
Published 2002
Both practical and spiritual, Rollercoaster is a must-read, not only for those suffering from cancer, but for their loved ones, caregivers and even for those few whose lives have gone untouched by cancer.
For more information and to order through Amazon.com click HERE
Reviews:
SP Practical & Spiritual; A must Read for all touched by
cancer, April 22 2002

sa
I devoured this book, staying up quite late to do so.
The author is very correct in telling how many many people diagnosed with an unusual and rare cancer react when they
learn they have Carcinoid.
As another person who was diagnosed in 1995, and who has
been very proactive in my treatment, I recommend this book
highly to all dealing with cancer -- not just the patients, but
also family members and friends. There is a great deal of very
useful and helpful information in this book.
Susan L Anderson, (Sunny Susan in AZ) April 26, 2002
sp
This book is about carcinoid cancer from the inside out, by a teacher of literature, and is well crafted without being oppressively literary. The story is told straightforwardly and with courage.
Stephen Pazan, Carcinoid Fighter, April 29, 2002