Childhood Cancer

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Childhood Cancer Survivors

Insurance

Survivors of childhood cancer frequently encounter discrimination when trying to obtain adequate insurance. Some survivors are unable to get insurance and others pay increased premiums because of their cancer history. Securing insurance coverage requires research and persistence.

Resource for help to obtain adequate insurance:

Website: https://triagecancer.org/state-laws

Life insurance

Many companies have strict medical requirements that sometimes exclude survivors no matter how long they have been cured.

Before shopping for life insurance, consider first whether or not you need it. Three important reasons for having life insurance are:

  • To replace wages if the family wage earner dies

  • To support an aged parent if the family wage earner dies

  • To provide burial expenses for a child

You probably do not need life insurance if:

  • You have no dependents (e.g., spouse, children, elderly relatives who require financial support)

  • You are married, have no children, and your spouse will not suffer financial hardship if you die

The easiest way to get life insurance if you have a cancer history is during open enrollment at your place of employment. Most companies have a period in which you can sign up without providing your medical history.

There are several ways to obtain life insurance:

  • Through place of employment. If you or your spouse/partner work for a large corporation, organization, or government agency they provide a group plan. These plans do not make individual evaluations of employees or their dependents in order to grant coverage. They may provide good coverage at reasonable rates and often have no waiting period for pre-existing conditions.

  • You can hire an independent insurance agent (one who does not work for a specific insurance company) to act as your broker and research estimates from several companies. Your state insurance department can provide you with a list of all the licensed insurance brokers in your area. The broker can check with many companies to find the best policy for your particular needs.

  • You can purchase a graded policy that will refund the premium and a percentage of the face value of your plan if you die within a certain number of years (called a waiting period). After the waiting period has passed, you will have full benefits.

Filling out application for life insurance

When applying for life insurance, the company usually first asks you to fill out a health questionnaire. You should answer all questions truthfully, but be careful to only answer the questions asked. For instance, if asked “Do you have cancer?” you can truthfully answer “no” if you are now cured. However, if asked, “Have you ever had cancer?”, you must answer “yes.”

If an insurance company learns that you have lied about your health status in your application, you or family members could lose some or all of their benefits.

Legal advice directs survivors when filling out insurance applications to only answer the specific questions asked. Do not volunteer any additional information. The company will decide after reviewing your application whether you qualify for insurance benefits and how much coverage will be provided.

Health insurance

As survivors mature, seek employment, and move away from home, many have encountered barriers to obtaining health insurance, such as rejection of application based on cancer history, policy reductions, policy cancellation, pre-existing condition exclusions, increased premiums, or extended waiting periods. Recent U.S. healthcare reform legislation, the Patient Protection and Affordable Care Act (ACA) of 2010 and its companion amendments, has the potential to relieve many of these problems for survivors.

The ACA offers the following provisions that are relevant to childhood cancer survivors:

  • Young adults are allowed to stay on their parents’ insurance plan until they turn 26 years old. One exception (in 2014) is that “grandfathered” group plans do not have to offer coverage for a young adult up to age 26 if the young adult is eligible for group coverage outside the parents’ plan.

  • Certain preventive services are covered, including services that are important aspects of survivorship care.

  • If you are unemployed with limited income, you may be eligible for health coverage through Medicaid. Criteria for eligibility may vary state-to-state.

  • If an employer doesn’t offer health insurance, you will be able to buy it through a Health Insurance Marketplace Exchange, which will offer a choice of health plans.

  • You may get tax credits to help pay for insurance if your income meets certain government defined income requirements.

  • Health plans cannot limit or deny coverage for a child younger than age 19 simply because the child has a pre-existing condition. This protection will be extended to people of all ages.

  • The Pre-existing Condition Insurance Plan (PCIP) makes health coverage available if you have been denied health insurance because of a preexisting condition, and you’ve been uninsured for at least 6 months.

Key provisions of the law have been phased in over several years, and were affected by court challenges and legislative actions. There may be further changes over time. Some companies consider a 5-year remission acceptable, while others exclude all cancer survivors from their life or health insurance policies. Most companies evaluate risk based on the type, grade, and stage of cancer, and how long you have been in remission. If you had a policy prior to diagnosis, it cannot be canceled because of your cancer as long as you pay your premiums.

The three main types of health insurance in the United States are group policies, individual policies, and public health insurance programs. Group and individual policies are either traditional indemnity policies or some variation of managed care. Publicly funded health insurance options include Medicaid, Medicare, state programs for low-income residents or residents with disabilities, county health programs, or state high-risk insurance pools.

Group policies

The easiest way to get insurance is if you or your spouse/partner work for a large corporation or government agency that provides a group health insurance policy. The larger the pool of employees, the less likely you are to be rejected for health coverage. In many cases, you will not be required to answer any questions about your health.

If you do not work for an employer with hundreds or thousands of employees, you may be eligible for group policies through other organizations such as labor unions, fraternal organizations, professional or business organizations, student associations, church groups, or other special interest groups. If their risk pool is large, the organization may be willing to provide you with adequate coverage if you are a member.

Individual policies

If you explore all of the groups with which you are affiliated and cannot obtain group coverage, check out individual policies. But be forewarned, individual health insurance policies can be exorbitantly expensive. An insurance broker may be able to help you find all options available to you. You might also consider the following options:

  • Your parents can extend their policy to cover you if you are disabled or handicapped.

  • Regardless of your abilities, your cancer history may qualify you as disabled.

  • Your parents’ policy will allow you to obtain a policy with the same company when you are no longer eligible for coverage on their policy.

  • Your state might have a catastrophic insurance pool. Your state’s Department of Insurance or Insurance Commissioner’s office can tell you whether this is an option.

  • You can get coverage through your spouse’s/partner’s employment.

If you cannot obtain group or individual insurance, it’s time to evaluate government programs.

Insurance during and after has been an utter nightmare. We were supposed to be worrying about the health of our daughters, but we were often forced to spend long hours on the phone making sure services would be covered or straightening out billing errors. We explained the same thing over and over to different people in different departments. Not to mention the added stress and distraction at work trying to figure out how to cover costs of necessary treatment, figure out payment plans, or arguing benefit terms with the insurance company.

My wife had to quit her job due to all the medical appointments and treatments for both girls. I had extreme fears of seeking a new job because we had already met our insurance deductible for the year and didn’t want to start a new insurance plan, especially having no idea whether a new insurance company would cover a pre-existing condition that required out of network treatments/specialists.

 

I own my own business now and was able to get health insurance through the state. There were a few times where I needed to pay out of pocket, but I never paid. I cannot get life insurance. I was on the cusp of getting it when I got my second cancer at 27, so my chances are even lower now.

 

I have not had barriers obtaining insurance. I have insurance through my employer, and since I work for a healthcare network the insurance is pretty good. This is my first insurance plan outside of my parents’ insurance plan, and it was a bit stressful making the change, but I haven’t experienced any issues so far.

 

I have health insurance through the market place because I work part time as a nurse, and you can’t get insurance when you’re part time. If I got it through my husband it would go up to $800 a month. I do not have life insurance because no one will accept me. I’ve tried a couple times.

 

She is not eligible for life insurance. When she turns 18, she could have gotten an off-name plan but she cannot get one now because she has had two cancers. We have not had any issues with medical insurance. Even when my husband’s job was terminated during COVID and we lost his insurance, we paid for a plan that included her doctors in network.

Government healthcare plans in the United States

The United States government does supply low-cost health insurance to some citizens through the Medicare and Medicaid programs. It also has healthcare plans for those in current military service and, through the U.S. Department of Veterans Affairs, for former military personnel. In addition, some states have healthcare plans.

Medicaid. Medicaid is a federal program that provides free or low-cost health insurance coverage to certain individuals with limited income, but it is administered at the state level. The federal government requires all states to provide a minimum level of benefits, but states are allowed to apply for exceptions. Medicaid programs must follow federal rules, but the coverage, costs, and other details may differ in each state. Keep in mind that Medicaid programs have different names from state-to-state. For a full list of specific Medicaid state names and laws, visit the website below and learn particulars for your state, how to apply, and updated information online. Website: https://triagecancer.org/state-laws/medicaid

Supplemental Security Income (SSI). SSI or disability insurance is administered by the Social Security Administration (SSA). If a person is diagnosed with a chronic or serious illness and undergoing treatment or unable to work because of this illness/injury, SSI can provide some financial aid. To qualify for SSI, there are income limits if you do work part-time. In 2025, the limit is $2,000 in countable resources. Too much family income, may not always bar a disabled child from qualifying for SSI and Medicaid. In some cases, family income will reduce the amount of SSI received to as low as $1 per month, but the beneficiary will still get full medical coverage. Individual state rules also affect eligibility. See further guidance from a social worker or your state Medicaid office since guidelines change over time. To find out how to apply and check current amounts of assistance in your state contact your local SSA, check online: Website: https://triagehealth.org/quick-guides/ssi or call: Phone: 1-800-772-1213

Representative Payee. You can appoint someone as your Representative Payee if you need help managing your SSI benefits, often a parent or family member. Since 2014, several states offer a savings account for SSI recipients called ABLE (Achieving a Better Life Experience) accounts which allow SSI recipients to save above the $2,000 dollar earning limit and stay eligible for SSI and other benefits. Find out more at: Website: https://www.ablenrc.org

Disabled Adult Child (DAC). An adult survivor who has a qualifying disability that began before the age of 22 and meets the definition of disability for adults, may be eligible for benefits based on their parents’ Social Security earnings record if the DAC is unmarried and age 18 or older. The parent must be deceased or receiving retirement or disability benefits themselves. Even if the DAC has never worked, benefits are paid based on the parents’ earnings record. For more information: https://www.ssa.gov/benefits/disability/qualify.html

At the time of writing this you cannot apply for DAC benefits online. To file for DAC benefits, you must call SSA at 1-800-772-1213 (TTY 1-800-325-0778) and request an appointment or find your local office and call for an appointment. See Resources.

Qualifying for Aide at home. If a disabled adult cannot perform activities of daily living (ADLs) such as showering, grooming, eating, using the toilet, they can qualify for Home and Community Based Services. In some cases, a family member may be paid to provide care in lieu of an aide. These services are state-based and vary widely depending on state where you live. The family member/caregiver must qualify financially, and depends on Medicaid status. For more information, you can contact your State’s Center for Independent Living (CIL) or your local Intellectual/Developmental Disability (IDD) agency. Website: https://acl.gov/ or locate your state agencies, Website: https://dial.acl.gov/home

Comprehensive health insurance plans

The majority of states offer high-risk individuals, such as survivors, access to comprehensive health insurance plans (CHIPs), also called high-risk pools, are a means for individuals to obtain insurance regardless of their physical condition or medical history.

For more information about CHIPs, call your state insurance commissioner or department and check the following: https://www.hhs.gov/answers/medicare-and-medicaid/index.html

Legal aid assistance: ask for pro bono (free) legal help. https://triagecancer.org/

If you have specific problems getting appropriate medical benefits under Medicaid, state health plans, or other public healthcare plans, a social worker at your treating hospital or survivorship program may be able to help. If your problems are of a legal nature, such as outright refusal of services or discrimination, talk to a disability attorney or call your state bar association and ask for its pro bono (free) legal help referral service.

Legal protection in obtaining health insurance

Before the ACA, although neither states nor the federal government mandated a legal right to insurance, there were some legal remedies to insurance discrimination.

COBRA. The Comprehensive Omnibus Budget Reconciliation Act (COBRA) is a federal law that requires public and private companies employing more than 20 workers to provide continuation of group coverage for 18 months to employees if they quit, are fired, or work reduced hours. Coverage must extend to surviving, divorced, or separated spouses, and to dependent children. You must pay for your continued coverage, but it must not exceed by more than 2 percent the rate set for your former co-workers. By allowing you to purchase continued coverage, you have time to seek other long-term coverage.

Some states require COBRA benefits from employers with fewer than 20 employees. Check with your State Insurance Department to see if your state has a mini-COBRA law.

Maintaining continuous health insurance coverage is critical to prevent being locked out of healthcare due to pre-existing conditions.

If you are leaving a job that provides you with health insurance for one that does not, pursue a COBRA plan. These plans allow you to continue your coverage after leaving employment. You will pay the full rate, including the contribution previously made by your employer, but it will still be less than what you’d pay as an individual customer.

ERISA. The Employee Retirement and Income Security Act (ERISA) is a federal law that prohibits employers from discriminating against an employee for the purpose of preventing the employee from collecting benefits under an employee benefit plan. For example, an employer may violate ERISA by firing a cancer survivor to exclude him from a group health plan. ERISA also prohibits employers from encouraging a person with a cancer history to retire as a disabled employee. ERISA does not apply to job discrimination (e.g., denial of new job due to cancer history), discrimination that does not affect benefits, and employees whose compensation does not include benefits.

Health Insurance Portability and Accountability Act of 1996 (HIPAA, also known as the “Kennedy-Kassebaum law”). This law allows individuals to change to a new job without losing coverage if they have been insured for at least 12 months. It also 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.

  • Pension and Welfare Benefits Administration of the U.S. Department of Labor This agency enforces laws related to COBRA, ERISA, and parts of HIPAA and ensures that disabled are entitled to receive healthcare (866) 487-2365 or 866-4-USA-DOL

  • Website: https://www.dol.gov/agencies Go to: Employee Benefits Security Administration (EBSA)

  • Consult the Cancer Legal Resource Center (CLRC). The CLRC provides free information and resources about cancer-related legal issues to cancer survivors, caregivers, healthcare professionals, employers, and others coping with cancer. Contact the national office at (866) 843-2572 or Disability Rights Legal Center: Website: https://thedrlc.org Scroll to: cancer justice

Canadian health insurance

The Canada Health Act ensures coverage for all Canadian citizens and non-citizens who require medically necessary (as defined by provincial and territorial health insurance plans) hospital and doctors’ services. Healthcare regulations are the same nationwide, although providers can be hard to find in less-populated provinces. A wide variety of specialists is available through the Canadian health system. Many of the best are affiliated with university hospitals. Some services not covered under the Canada Health Act (e.g., drugs prescribed outside hospitals, ambulance costs, and hearing, vision, dental care) may be funded by supplementary benefits from provinces and territories, by an employer-based group insurance, or by purchasing private insurance. More information about Canadian healthcare coverage is available at: https://www.canada.ca/en/health-canada.html

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