Insurance Basics for Individuals with LFS – Health insurance plans are designed to cover some or all of the costs of medical care for an individual or family. Not all plans are the same. In fact, they can differ quite a bit! Understanding some basic health insurance terminology and the answers to some common questions can help you make informed decisions about your health insurance. The LFSA’s Genetic Counseling Advisory Group has developed a “tip” sheet to help navigate through your basic insurance options: Insurance Info Sheet 2022. In addition to reading through the information, you can also visit the “Resources” section of this guide for links to more information on health insurance.
Genetic Testing – Generally speaking, genetic testing companies can provide financial aid to help ensure you get the genetic testing you need. Your genetic counselor can assist with your application. Here are three companies that offer aid:
Invitae: reference Li-Fraumeni syndrome test. Invitae accepts all insurance or offers an affordable cash price, patient assistance, and payment plans. Additionally, they offer free family variant testing and complementary genetic counseling.
CancerCare’s Co-Payment Assistance Foundation (video) distributes over $15 million dollars in co-payment and financial assistance for chemotherapy and targeted treatment drugs every year. Focus on recovery and visit www.cancercarecopay.org for more information.
For many of us, there is no “perfect” health care insurance coverage. With the Affordable Care Act in mind, Global Genes developed their “Navigating Health Insurance” publication as part of their Rare Toolkits product line. See if anything in their “toolbox” can help you at this time!
Cure Today magazine: Considering Cost – What’s an immunotherapy worth? The oncology community is taking action on controlling the costs of immunotherapy. See the end of the article for some resources that may be able to provide financial help. (July 2015)
AACR’s Cancer Today: The Cost of Cancer – expensive treatments can leave patients with a mountain of debt. Resources are available to help. (Summer 2015)
Having trouble with insurance coverage of annual screenings as an LFS patient? In consideration of the challenges of LFS and supporting research (reference the Lancet article below as supporting evidence), MRI screenings have become the new standard of care adopted by many of the institutions that care for pediatric LFS patients. Please encourage your insurance provider to contact any one of the centers referenced as LFS patient care providers on our webpage for guidance.
National Cancer Institute’s Cancer Topics: resources for addressing social, emotional, and financial issues in Coping with Cancer (December 2014)
Need assistance? Looking to volunteer?? The Patient Advocate Foundation provides professional case management services to Americans with chronic, life threatening and debilitating illnesses. See “Patient Services” and all they can do to help with insurance coverage and access to health care.
In the United States since 2014, the Affordable Care Act provides that, for the most part, insurance companies cannot deny coverage for pre-existing conditions, providing insurance is sought during open enrollment.