Health Insurance & Legal Protections
Health Insurance Overview
Maintaining health insurance is especially important for cancer survivors, since you need to guard against your health and wellness more than most people. It's especially important that survivors have health insurance coverage that is continuous (no lapses in coverage) regardless of changes in your age, school, or job situation.
Managing your health insurance for the first time as a young adult can be overwhelming. If you need help with the basics, the Department of Health and Human Services provides a handy overview in this “Understand your health coverage”. This user-friendly document provides a glossary of common insurance terms like “In network Copayment” and “Explanation of Benefits (or EOB),” as well as a guide to reading your insurance card and tips for preventing health care fraud.
HHS provides a list of questions to ask yourself about your insurance plan. If you don’t know the answers to these questions, it is recommended that you contact your insurance plan or state-run policy provider to find out the answers:
How much will I have to pay for a primary care visit? A specialty care visit? A mental health visit? A trip to the emergency room? Is the amount different for an ‘in-network’ or ‘out-of-network"‘ provider?
How much do I have to pay for prescription medicine?
What is my deductible?
Do I need a referral to see a specialist?
What services are not covered by my plan?
Affordable Care Act (ACA)
Although there are still considerable gaps in access to quality care for survivors, the Affordable Care Act, passed in 2010, cut the nation’s uninsured rate in half and has helped survivors overcome many of the barriers that previously existed.
Prior to full implementation of the ACA, adult survivors of childhood cancer were denied health care coverage more often than cancer-free siblings, paid more out-of-pocket for their health care, were more likely to borrow money to pay for health care, and were more likely to skip prescription refills due to cost (source: JAMA study).
Provisions of the ACA that may apply to childhood cancer survivors:
No lifetime and annual limits: Prohibits a health plan from putting annual or lifetime dollar limits on most benefits you receive.
Prohibition on rescissions: Prohibits a health plan from rescinding coverage of an enrollee except in the case of fraud or intentional misrepresentation of material fact.
Dependent coverage: Unmarried young adults can stay on their parents’ insurance plan until they turn 26 years old, regardless of whether or not they are in college.
Pre-existing condition protections: Prohibits pre-existing condition exclusions or discrimination on the basis of any health status-related factor.
Guaranteed Renewal: Requires that your health insurance issuer must offer to renew your policy as long as you continue to pay premiums. Except in some states, guaranteed renewal doesn't limit how much you can be charged if you renew your coverage.
Prohibition on excessive waiting periods: Prohibits a health plan from imposing excessive waiting periods, or those that exceed 90 days in length.
Essential Health Benefits: Require that qualified plans provide a set of "essential health benefits" that include mental health, prescription drugs, preventive services, and chronic disease management.
Federal and State Health Insurance Access Programs
Medicaid is a health insurance program sponsored by the federal and state governments that helps many people who can't afford to pay for some or all of their medical bills. If you have a low or modest household income, you may be eligible for free or subsidized health coverage for yourself or members of your family. Eligibility varies by state and may factor in household size, disability, family status, and other factors. Some states have adopted Medicaid expansion under the Affordable Care Act, which enables individuals to qualify for coverage based on income alone (below 133% of the federal poverty level).
April 2023 News - The End of Medicaid Continuous Coverage:
During the COVID pandemic, states were offered increased Medicaid funding in exchange for keeping enrollees continuously on their Medicaid rolls for the duration of the PHE, regardless of changes to enrollee circumstances (such as increases in income or giving birth). While the full public health emergency is set to end on May 11, 2023, the Consolidated Appropriations Act of 2023 included a provision that allows states to end their continuous coverage of Medicaid enrollees, deemed “unwinding,” beginning April 1. Every Medicaid enrollee in the country will need to go through a redetermination process, during which they will be evaluated on whether or not they still qualify for Medicaid. Because each state runs its own Medicaid program, the When and How of this process will look different depending on which state you live in. (Source: Young Invincibles Medicaid Unwinding Toolkit)
Children's Health Insurance Program (CHIP)
CHIP provides health insurance to children whose families earn too much money to be eligible for Medicaid but not enough money to buy private health insurance. Families must meet other requirements to be eligible.
There is no enrollment period for Medicaid and CHIP. If you qualify, coverage can begin immediately. The specific names of these programs vary state-by-state. Learn more about Medicaid and CHIP.
Medicare is a federally run health insurance program for people 65 and older and also for people with disabilities. Your cancer history may make you eligible as having a disability so there may be circumstances in which you might qualify for Medicare.
The Inflation Reduction Act of 2022 places a $2,000 cap on Medicare Part D out-of-pocket spending, bringing major relief to an estimated 1.2 million beneficiaries.
Under this program, the federal government gives funds to a number of hospitals and other medical facilities so they can provide free or low-cost services to those who are unable to pay. Each facility chooses which services it will provide for free or a lowered cost. Medicare and Medicaid services aren't eligible for Hill-Burton coverage. You may apply for Hill-Burton assistance at, before, or after you receive care. Call the Hill-Burton Program for more information at 1(800) 638-0742.
Consolidated Omnibus Budget Reconciliation Act (COBRA)
COBRA is a federal law that gives you a way of continuing the health insurance plan your employer provides. It applies if you decide to leave your job, are in-between jobs, or reduce your work hours and are no longer considered full-time. COBRA can be especially important for survivors who, because of their cancer history, need to maintain their health insurance coverage.
COBRA applies to employers with 20 or more employees. There is also a time limit to how long you can remain on the group plan through COBRA as well as limits on what you can be charged for this coverage. For more details on COBRA provisions, visit the Department of Labor website as www.dol.gov.
Legal Protections
Employee Retirement and Income Security Act (ERISA): ERISA is a law that prohibits employers from using knowledge of an employee’s health history to exclude him or her from benefit plans offered to other employees. The law also permits employees to appeal insurance decisions and to sue the employer or insurer if benefits are now provided in accordance with ERISA rules. The U.S. Department of Labor provides information about filing a claim, here.
Health Insurance Portability and Accountability Act of 1996 (HIPAA): This law allows individuals to change employers without losing coverage, if they have been insured for at least 12 months. It prevents group health plans from denying coverage based on medical history, genetic information, or claims history, although insurers can still exclude those with specific diseases or conditions. It also increases portability if you change from a group to an individual plan. For additional information, visit the Centers for Medicare & Medicaid Services’ HIPPA Helpful Tips guide (PDF).
For information on other legal protections for students and employees, visit our Education and Employment page.