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U.S. NATIONAL SUPPORT AND RESOURCES
We are in the process of developing all the support and treatment resources available, throughout the world, for individuals at high risk for Lynch cancers. The biggest fear for individuals with Lynch syndrome is whether or not there will be accessibility to surveillance testing, as well as treatment in the event one were to contract a cancer.
Each and every state within the U.S. offers affordable health care for those persons who are rejected from health insurance companies for possessing a preexisting condition. Administered by individual states and the Federal Government, this program is known as the Affordable Health Act.
As well, Our goal? No more survivors and hundreds of thousands of previvors until a cure can be found. Together we will make a difference.
Any and all resources listed upon any page within this website are not an endorsement of Lynch Syndrome International nor a recommendation of specific organizations, company, corporation, manufacturer, health care provider, product, institutions or facilities by Lynch Syndrome International. By listing resources under our "Support Page," Lynch Syndrome International is merely providing a road map for individuals to follow in their search for healthcare and cancer related services.
Medicaid is a federal healthcare program administered by individual states. The states are authorized to cover colon cancer screening but has the autonomy to decide what kind of screening it will cover and under what circumstances. A federal website (govbenefits.gov) can help you find and determine your eligibility for state-administered programs like Medicaid.
The CDC (Center for Disease Control) offers a program entitled "Screening For Life." This program reimburses local public health agencies for cancer screening. Be certain and ask your local health agency if they participate and if you qualify.
The National Financial Resources Guidebook for Patients by the Patient Advocate Foundation, provides a thorough comprehensive list of resources, state by state, for those in need of financial resources to obtain diagnostic testing, treatment and ongoing surveillance.
Information:
Oconolink: University of Pennsylvania
List of Cancer Resources by Country (Many may be outdated)
Learn More About Colorectal Cancer Through Med Link (In Many Different Languages)
National Library of Medicine (Medline)
Division of Facilities Compliance and Recovery
Georgetown University Health Policy Institute - Consumer Guide for Getting and Keeping Health Insurance
Henry J. Kaiser Family Foundation
National Human Genome Research Institute (NHGRI)
U.S. Department of Labor Employee Benefits, Employee Guide to Health Benefits Under Cobra
The Cancer Project Education and Guidance For Dietary Issues And Cancer Prevention
Organizations Offering Assistance, Including Co-Pays and Financial Assistance
African Women's Cancer Association
American Institute for Cancer Research
Black Women's Health Imperative
Bridge of Blessings - Financial Assistance for Women With Ovarian Cancer
Cancer CoPayment Assistance Foundation
Cancer Financial Assistance Coalition
Cancer Care Limited Financial Svcs for Colorectal, Womens Cancers, Pancreatic Cancer, Including Screenings
Cancer Service Directory through the National Cancer Institute
Cancer Treatment Center Search through the American Cancer Society
Candlelights Childhood Cancer Foundation
Cervical Cancer Testing Centers
Cheap Colonoscopies.com ($950 colonoscopies, nationwide)
Chronic Disease Fund (Good Days)
Clinical Center (NIH) Guide to Governmental Cancer Trials
Department of Veterans Affairs This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Fertile Hope (Livestrong Fertility Resources)
Financial Help For People With Cancer
Find a Gastroenterologist (AGA Referrals)
GARD Genetic and Rare Diseases Information Center
Genetic Testing Laboratories through Genetests
Hill-Burton Funded Healthcare Certain hospitals receive federal funding to provide services to individuals who are low income and do not have the means to pay for their own health care
Johnson and Johnson Patient Assistance Foundation
American Kidney Fund
Low Cost HRSA Health Care (Locations Throughout the US)
Lance Armstrong Cancer Financial Assistance
Liddy Shriver Sarcoma Initiative Support and Financial Help
Medicare Colorectal Cancer Screening Program
Myriad Genetics Financial Program
http://www.mylifeline.org/ Free Websites for Cancer Survivors, Caretakers and Families
National Coalition for Cancer Survivorship
National Collegiate Foundation - Provides Financial Assistance to Young Survivors Attending College National Council on Aging
NTAF (Fundraising Assistance and Support for Transplant and Catastrophic Injury) 800-642-8399
National Financial Resources Guidebook for Patients
National Organization for Rare Disorders - Assistance Program
Netwish Provides general financial help
NIH Clinical Studies Assistance
NORDS Patience Assistance Programs
Partnership for Prescription Assistance
Patient Access Network Foundation
Resolve (Assistance with Fertility Treatment)
State and Local Health Departments
States That Require Health Plans To Pay For Clinical Trials
Team Cantinuum Patient Grants and Loans
Tricare Service Directory (for military members)
Veterans Administration Care Locations
Veterans Administration Cancer Program
Prevent Cancer Foundation - Funds Research on prevention, educates on prevention, resources
Services For Underserved Persons
Avoncare provides financial medical assistance to medically underserved women.
Native American Cancer Research
P This e-mail address is being protected from spambots. You need JavaScript enabled to view it - Hispanic Latino Outreach Program
Viva Bien Aprenda Como Spanish Website
National Institutes of Health Spanish Hotline 301-592-8573
Teens Living With Cancer -Support in Spanish for Teens with cancer
PAF's Scholarships for Survivors Program (for young adults)
This e-mail address is being protected from spambots. You need JavaScript enabled to view it (For young adults with cancer) Websiite
Luzca Bien...Sientase Mejor (Look Good...Feel Better) Spanish
My Oncofertility.org (Spanish)
Look Good...Feel Better for Teens 800-395-LOOK
Camp Kesem for kids and teens whose parents have cancer, California
Cancer and Careers (Spanish and English) career coaching, education, resources toward employees with cancer
For Young Adults Living With Cancer
LIVESTRONG Young Adult Alliance
Single Jingles: A Testicular Cancer Foundation
Camp Mak-A-Dream medically supervised, cost-free Montana experience, in an intimate community setting, for children, young adults and families affected by cancer.
How To Find A Gynecological Oncologist-Gynecologic Cancer Foundation
Tips for Finding Financial Assistance
The Desk.Info Roadmap Into Government Assistance
The American Cancer Society is a godsend to those of us who have sustained Lynch cancers. They are available to help with almost anything a survivor needs from assistance with head coverings, to the provision of medical services, to providing a warm compassionate person to listen to an anonymous, frightened voice and even transportation to medical appointments. Do not hesitate to contact the American Cancer Society with your needs.
Financial Assistance for Medical and Genetic Testing:
The Federal Government subsidizes thousands of primary health clinics across the United States, known as HRSA Clinics. These are listed with each individual state. The thought is, if one does not have the financial means to obtain necessary screenings and treatment, these resources are always available.
The process would be to personally see a primary care provider at one of these facilities, advise him/her of the high risk to Lynch syndrome by providing evidence of a family history of Lynch cancers or evidence of a direct relationship with a family member with a diagnosed Lynch syndrome mutation and have him/her prescribe genetic counseling and testing for Lynch syndrome, or provide evidence of possessing a Lynch syndrome mutation and requesting the general practitioner refer you to a facility for ordered surveillance testing.
As well, the NCI finances hospital cancer programs throughout the United States. These NCI hospitals and facilities are also listed beneath each state in which they are located, as they provide low cost/no cost health care for those who are in need and who are eligible.
Prescription Assistance
Adria Patient Assistance Plan 614-764-8000
Bristol-Meyers Indigent Patient Assistance Program 812-429-5000 Provides Cytoxan to patients with financial need
ICI Pharmaceutical Novaldex (tamoxifen) Patient Assistance Program 1-800-456-5678 Provides tamoxifen to patients with financial need.
Partnership for Prescription Assistance (PPA) 1-888-477-2669
Searle Pharmaceutical Company provides certain medicines to enrolled physicians. Any physician may enrolled. The physician is provided coupons to be redeemed for medicines by qualified patients 1-800-542-2526
Genentech - Patient Assistance Program provides financial help for cancer patients.
Needymeds - a website operated by a physician, a social worker and volunteers offering information regarding financial assistance for pharmaceuticals.
RXHope.com Complete List of Pharmaceutical Assistance by Name of Company
Air Transportation: (Free or Low Cost Airfare to Treatment for Those In Need)
New Directions for people with disabilities, inc. is a 501(c)(3) non-profit organization providing high quality local, national, and international travel vacations and holiday programs for people with mild to moderate developmental disabilities.
The National Patient Travel HELPLINE provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in the national charitable medical air transportation network.
Patient AirLift Services arranges free air transportation based on need to individuals requiring medical care and for other humanitarian purposes.
TSA Cares is a helpline to assist travelers with disabilities and medical conditions. TSA recommends that passengers call 72 hours ahead of travel to for information about what to expect during screening.
Mission Air Transportation Network (Canada) 416-924-9333
Corporate Angel Network, Inc. White Plains NY Corporate Aircraft free air transportation 914-328-1313
Airlifeline(USA) 800-446-1231 free air transportation for those in need of medical treatment who cannot afford commercial travel.
Edward J. Safra Family Lodge at the NIH - Lodging while getting treatment at the NIH
Angel Flights For Veterans Services (For military families and veterans in need)
National Patient Travel Hotline
National Patient Air Transport HELPLINE
Lodging During Treatment
Joe's House Lodging Guide for Cancer Patients
Hope Lodge - Operated by the American Cancer Society
Hospitality Homes provides temporary housing in volunteer host homes and other donated accommodations for families and friends of patients seeking care at Boston-area medical centers.
The National Association of Hospital Hospitality Houses supports homes that help and heal to be more effective in their service to patients and families.
Ronald McDonald House Charities
Groceries, Cosmetic Care and Subsistence
- Angel Food Ministries Provides food assistance in 32 states
- Low Income Home Energy Assistance Program -If you have difficulties paying for your utilities, LIHEAP may be able to assist you with bill payments, an energy crisis, and weatherization and energy-related home repairs. To apply, call the National Energy Assistance Referral (NEAR) project toll-free at the number provided to get the contact information for your local LIHEAP office. (Click on name for hyperlink contact)
- Society of St. Vincent de Paul Provides various services to people in need, including food programs, emergency financial assistance, emergency transportation, rent/mortgage assistance, free pharmacy services, budget counseling, referral services, and more. Link is to local councils and contact the local council for assistance.
- Assistance with General Living Expenses - Enter Zip Code for Resources in your Local Area
- Brenda Mehling Cancer Fund provides financial assistance for patients ages 18-40 who are going through cancer treatment. Grants are awarded to cover co-payments, rent/mortgage, transportation, car insurance, repairs, and groceries.
- Angel Food Ministries Operates in 32 states providing food relief
- Blue Note Fund by the Colon Cancer Alliance
- Team Continium Provides Assistance with Utilies and Day to Day Expenses
- Road To Recovery - ACS program providing transportation to and from treatment
Health Insurance Resources Including High Risk Insurance Through States
- Health Resources and Services Administration of Databases of National Low Cost - No Cost Health Care Options
- Health Insurance Information by State
- Cancer Index of Information and Resources
- Look Good Feel Better - Cosmetic Assistance for Women With Cancer
- National Organizations Offering Assistance To Those With Cancer
Legal Information and Referrals:
- Cancer Legal Resource Center
- Cancer Legal Line
- Patient Advocate Foundation
- Genetic information Non-Discrimination Act of 2008 EEOC Website
- National Genome Research Institute Fact Sheet on the Genetic Information Non-Discrimination Act
- Genetic Testing Privacy Laws By State dated March of 2008
- Genetic Alliance Comprehensive Review of the GINA Legislation
- GINA Materials for the Public and Healthcare Providers
- Guide to the Genetic Information Nondiscrimination Act
- Frequently Asked Questions From Genetics and Public Policy Center
- C-3 - Colorectal Cancer Coalition - Political Advocacy - Contact Email
- Genetic Testing Privacy Laws by State dated 3/8/2008
Support
- Cancer Hope Network
- Cancer Support Community
- Cancer Survivors Network
- Colon Cancer Alliance - Support, Information, Legislative Advocacy, Education, Public Awareness, Research
- Dream Foundation - Grants Wishes to Terminally Ill Adults - Flower Program for Santa Barbara, Los Angeles, Res.
- Fertile Hope
- Fight Colorectal Cancer - (Formerly Colorectal Cancer Coalition) Support, Information, Legislative Advocacy
- Kidney Cancer Association - Collaborates with the National Cancer Institute (NCI), American Society for Clinical Oncology (ASCO), American Urological Association (AUA), and other institutions on research projects. We educate families and physicians, and serve as an advocate on behalf of patients at the state and federal levels. (International Organization)
- Transplant Foundation 1-804-285-5115
- Livestrong
- Lustgarten Foundation - Pancreatic Cancer Research
- Ovarian Cancer National Alliance - Support, Research, Clinical Trials, Information, Legislative Advocacy
- Survivor Alert - For Young Survivors
- Sam Fund - Grants to help young survivors get back onto their feet following cancer treatment.
- Teens Living With Cancer
- TLC Tender Loving Care Provides wigs, hairpieces, bras, hats, swimwear, breast forms, prostheses
- Cancer Information and Counseling Line 1-800-525-3777
- American Psychosocial Oncology Society Provides psychological care for patients and caregivers
Revised 8/7/2012