Assistance & Support for Neuroendocrine Tumors
You are not alone. There are resources to help you on your journey. There is a close-knit community of NET survivors, caregivers, and health care providers to help. Others have found information, insight, and inspiration by connecting with the NET community.
NETRF does not provide patient financial assistance, but a few other nonprofit organizations do.
National Organization for Rare Disorders (NORD) has a Patient Assistance Program for medication-specific assistance, disease-specific assistance, and clinical trial programs.
Cancer Care is a national nonprofit organization that provides free, professional support services to anyone affected by cancer.
Social Security Agency Benefits for People with Disabilities Programs are federal programs that assist people with disabilities. Only individuals who meet medical criteria may qualify for benefits under either program.
Air Charity Network provides access for people in need seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis.
GoodDays (formerly the Chronic Disease Fund) is a full service financial and medical assistance organization, which helps underinsured patients obtain the medications they need.
Patient Advocate Foundation assists patients with medical debt crisis, insurance access issues, and job retention issues.
Association of Community Cancer Centers publishes a resource guide of patient assistance and reimbursement resources.
Amgen
Uninsured patients may be able to receive Amgen medications at no cost from Amgen Safety Net Foundation (amgensafetynetfoundation.com).
Commercially insured patients may get help with their deductible, co-insurance, and/or co-payment requirements from Amgen First Step program. Visit amgenfirststep.com or call 1.888.65.STEP1 (1.888.657.8371).
Pfizer
Commercially insured patients may qualify for the Pfizer Oncology Together Co-Pay Savings Program. With a Co-Pay Savings Card, patients pay a $0 co-pay per eligible monthly prescription for select Pfizer medications. The maximum annual benefit is $25,000. To enroll, download the Support Services & Patient Assistance Enrollment Form (pfizeroncologytogether.com/enroll) or call 1.877.744.5675, Monday through Friday, 8:00 am to 8:00 pm ET. Visit pfizeroncologytogether.com for more information.
Genentech
The Genentech Patient Foundation gives free Genentech medicine to people who don’t have insurance coverage or who have financial concerns. Learn more gene.com/patients/patient-foundation/see-if-you-qualify.
Genentech Access Solutions can help patients find out coverage for a specialty medicine, learn what authorizations might be needed, and if patient assistance might be needed. To register, visit genentech-access.com and follow the instructions. For assistance, call 866.422.2377, Monday through Friday, 9:00 am to 8:00 pm ET.
Genetech BioOncology Co-pay Assistance program helps patients pay for prescription medications costs with a co-pay card. Approved patients pay as little as $5 for a prescribed product with an annual limit of $25,000. To get started, call 855.MYCOPAY (855.692.6729) or visit CopayAssistanceNow.com.
Novartis
Novartis Patient Assistance Foundation helps those without third-party insurance for their medicines or those facing financial hardship. Contact the Novartis
Patient Assistance Foundation at: 1.800.277.2254, or go online to:
patient.novartisoncology.com.
Novartis Oncology Universal Co-Pay Cared helps eligible patients pay no more than $25, subject to a maximum benefit of $15,000 per calendar year. Find out if this program is right for a patient by calling 1.877.577.7756 or by going to: copay.novartisoncology.com and clicking on the name of the medication.
Patient Assistance Now Oncology (PANO) is a support center consisting
of insurance specialists and case managers who work with doctors and nurses to find the right services for their patients. Ask your health care team to contact PANO Oncology (PANO) at hcp.novartis.com/access or 1.800.282.7630.
Ipsen
A copay program is available to eligible commercially insured and uninsured patients enrolled in IPSEN CARES. Most eligible patients pay no copay subject to a maximum annual benefit of $20,000. Program exhausts after 12 months, 13 injections, or a maximum annual benefit of $20,000, whichever comes first. The maximum copay benefit per prescription for cash-paying patients is $1,666.66, subject to the $20,000 annual maximum. Patients must enroll annually to receive the continued benefit. For more information, visit ipsencares.com/patientsupport or call 866.435.5677.
Other
Look for more medication assistance programs in the Association of Community Cancer Center’s Patient Assistance and Reimbursement Guide.
UNITED STATES
Learn Advocate Connect (LACNETS)
INTERNATIONAL
International Neuroendocrine Cancer Alliance (INCA)
ASIA PACIFIC
Asia Pacific Neuroendocrine Tumor Society
AUSTRALIA
BELGIUM
CANADA
DENMARK
FRANCE
Association des Patients porteurs de Tumeurs Endocrines Diverses (APTED)
GERMANY
Netzwerk Neuroendokrine Tumoren (NeT) e. V
INDIA
Carcinoid and Neuroendocrine Tumor Society India
IRELAND
ITALY
Italian Association Neuroendocrine Tumours NPO
JAPAN
NORWAY
SINGAPORE
Carcinoid & Neuroendocrine Tumor Society (CNETS SG) Singapore
SWEDEN
UNITED KINGDOM
Association for Multiple Endocrine Neoplasia Disorders (AMEND)
American Association for Cancer Research® (AACR)
American Society of Clinical Oncologists (ASCO)
Americas Hepato-Pancreato-Biliary Association (AHPBA)
European Neuroendocrine Tumor Society (ENETS)
National Comprehensive Cancer Network® (NCCN)
North American Neuroendocrine Tumor Society (NANETS)
Pheochromocytoma and paraganglioma RESearch Support ORganization (PRESSOR)
Search here for a NET support group near you.
Inspire (groups for lung, GI, and pancreatic neuroendocrine tumor)
Learn Advocate Connect (LACNETS)
Association of Cancer Online Resources (ACOR) Carcinoid Cancer Online Support Group
Learn from those who’ve been there
As part of our regional patient conferences, the Neuroendocrine Tumor Research Foundation features patient and caregiver panels. Panelists share their connection to NETs and offer insights about what they have learned along the way.
Chicago patient and caregiver panel
Houston patient and caregiver panel
Indianapolis patient and caregiver panel