Childhood Cancer

Survivors of childhood cancer frequently encounter discrimination when they try 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.

Life insurance

Buying life insurance is not one of life’s pleasures, especially for survivors of cancer. 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 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 don’t 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.

    I never took out life insurance because I always felt invincible. I just didn’t think anything would ever happen to me. Plus, I don’t have any dependents, so there is no real need to have life insurance.

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 and not have to provide your medical history.

In my many jobs, I never forget to enroll in the first 30 days after I’m hired. The new-hire conditions I’ve read state that the insurance company can come back and demand that you be medically qualified if you miss this first 30 days. I know the experts say insuring your children is a bad risk, but as we all know, children do get sick and they do die.

The experts will say, if the unlikely happens and your child dies, you can dip into savings for their funeral. Hey, like any of us have savings after all we’ve been through? In my employer’s case, each of my children is insured for $20,000, which is pretty generous since it’s usually only $5,000. It only costs me 80 cents a pay period. May I never use it, and may it be money down the drain.

There are several ways to obtain life insurance:

  • You or your spouse/partner can work for a large corporation, organization, or government agency that has group plans. The plans do not make individual evaluations of employees or their dependents. They may provide good coverage at reasonable rates and often have no waiting period for pre-existing conditions.

  • You can get estimates from several companies by hiring an independent agent (who does not work for a specific company) to act as your broker. 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 give back your 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.

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 sure to only answer the questions asked. For instance, if it asks if you have cancer, you can truthfully answer “no” if you are cured. However, if it asks if you have ever had cancer, you need to answer “yes.”

I recently bought a very cheap (pennies a month) policy on all my kids. The only statement I had to sign asked, “Has the insured sought treatment for cancer in the last 5 years?” So I thought, “Okay, the BMT was 6 years ago and she was effectively off treatment 1 year past that. That’s 5 years.” So I marked “NO” on the form.

One long-term survivor says he has never told the truth on his applications for both life and health insurance:

I have never had any insurance problems about the cancer I had 25 years ago because I lie. I just don’t share that information. I suppose they could find out because I always tell my current doctor about my history. So if they requested the records they could conceivably find out.

In the above case, if the insurance company learned about his history, he or his family could lose some or all of their benefits. A parent of a survivor who is also a lawyer cautions:

After the initial application process, the company may require a physical or medical history from your doctor. Again, only answer the specific questions asked, and don’t volunteer any information. After reviewing all of the facts, the company will decide whether it will insure you and, if so, how much coverage they will provide.

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I had cancer as a child 42 years ago. I can get life insurance, but it is restricted. I can stretch it to $15,000 or $20,000, but they won’t give me more.

• • • • •

I was able to get term insurance for a good rate. I told my insurance agent about my ALL (acute lymphoblastic leukemia) history, gave him a glowing letter from my doctor about my health, the recent excellent results from my physical, and some technical literature of ALL cure rates. My term policy is for a million dollars, plus I got $150,000 through work with no questions asked. The bigger the employee base, the more diluted the effect of one person. They just want you to be honest with them. The more money they make, the less they care about whether you had cancer.

It makes sense to get as much life insurance as you can if a low-cost opportunity arises.

When I started to work for the university and had the chance to pick up extra life insurance (they pay for the equivalent of my salary’s worth), I maxed it. Quadruple my salary and no health questions. I felt like it would be well worth it just in case. This way, when we start a family, I will already have it. Of course, this is (hopefully) going to be a complete waste of money.

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. 1 Several key provisions of the law will phase in over several years, but that may be affected by court challenges and legislative actions. You can find up-to-date information about the current status and features of the law at .

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 (until 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—up to about $15,000 per year for a single person—you may be eligible for health coverage through Medicaid (starting in 2014.)

  • If an employer doesn’t offer health insurance, you will be able to buy it through an Affordable Insurance Exchange, which will offer a choice of health plans (starting in 2014.)

  • You may get tax credits to help pay for insurance if your income is less than about $43,000 for a single individual and your job doesn’t offer affordable coverage (starting in 2014.)

  • Health plans can’t 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 (starting in 2014).

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

If the ACA is changed or struck down by the Supreme Court or congressional actions, health history will again be an issue if you have to apply for health insurance. The following information about pre-ACA health insurance options will apply in that case.

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 you had, 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.

I try to convince my teenaged son that he has to do well in school. He’s had two cancers, and he will always need good health coverage. I want him to think about the future, do well, and go to college. Our insurance will cover him as long as he’s in college. Not having any insurance will never be an option for him. It stinks that he has to think about this at 16, but it’s just a fact of life.

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My son was treated at Group Health ® until he finished college and went to work for a large investment brokerage house. He signed up for their group coverage and his cancer history didn’t make a difference. I kept him on our policy for a couple of years just in case there was a problem with his insurance. But it’s been fine.

Group policies

The easiest way to get insurance is for you or your spouse/partner to 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.

You really are doing well to have a big, expensive comprehensive policy with a huge lifetime limit. If you have to take a high deductible to make it affordable, do it. I always figured that I could borrow a few hundred to a couple thousand from Dad to pay the deductible if things got tough, but asking him for $100,000 to pay for something that our policy didn’t cover at all would be out of the question.

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I’ve always worked either for a university or a hospital. I’ve never once been asked a question about my health. It doesn’t matter if you are a janitor or a doctor, you get the same coverage, no questions asked.

• • • • •

I stayed on my parents’ insurance during college. The 2 years after college I had no health insurance. It was scary. I left that job and went to work for a huge organization so that I could be accepted into the group policy with no physical.

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, they may be willing to provide you with adequate coverage if you are a member of the group. The Encyclopedia of Associations , available in the reference section of most public libraries, includes information about which groups offer insurance coverage.

Individual policies

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

  • 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.

    You need to go out and get a good job not just to make a living and support yourself, but to get your health insurance. I went without health insurance for awhile, which was scary, so I was just ecstatic when I got it. It was expensive, but I didn’t care because I had it. Then I went to work for a big consulting firm dealing mostly with the healthcare industry and I got better health insurance. When I got married, I got an even better plan because my wife works for an even bigger company.

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

Government healthcare plans in the United States

The U.S. 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 joint federal/state insurance program that covers approximately 36 million individuals, including children, the aged, blind, and/or disabled, and people who are eligible to receive federally assisted income maintenance payments like Supplemental Security Income (SSI). The federal government administers the program through the Department of Health and Human Services. Each state has an agency that administers Medicaid in that state (sometimes called the Department of Social Services or the Department of Public Welfare).

    Medicaid may pay for doctor and hospital bills, prescription medications, physical, occupational, or speech therapy, and home aides. Search online for the Medicaid office in your area or call your local or county social services department.

    In most states, disabled adults and children who qualify for SSI also qualify for healthcare coverage through the federal Medicaid plan. SSI is available to severely disabled children of low-income families or severely disabled adults who can demonstrate an inability to work. If married, the disabled adult and spouse must meet stringent income and asset limits. Survivors over age 18 years are evaluated based on their own income, not their parents’ income.

    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 get full medical coverage. Individual state rules also affect eligibility.

  • Medicare.  Medicare is federal health insurance funded through the Social Security program. You qualify for Medicare if you meet any one of the following criteria:

    • Sixty-five years or older and entitled to Social Security, Widow’s, or Railroad Retirement benefits

    • Totally disabled and collecting Social Security benefits for at least 24 months

    • Legally blind

    • On renal dialysis, regardless of age

    Only survivors who had Title II benefits as a child (a “Childhood Disability Beneficiary”) are eligible for Medicare, and marriage terminates that benefit until the survivor becomes eligible by reaching age 65.

    Medicare Part A covers hospital bills and charges from other healthcare facilities if eligibility requirements are met. Medicare Part B covers medical expenses, medical equipment, and some other supplies. Part B has a yearly deductible, and the premium is deducted from your Social Security check.

    Participating physicians accept the Medicare fee schedule. Medicare then pays 80 percent of the charges and you pay 20 percent. If you see a non-participating physician, you are responsible for the entire charge.

  • Comprehensive Health Insurance Plans.  The majority of states offer high-risk individuals, such as survivors, access to comprehensive health insurance plans (CHIPs). 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.

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, call your state bar association and ask for its pro bono (free) legal help referral service, or contact the National Disability Rights Network in Washington, DC, (202) 408-9514 ( ).

Legal protection

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.

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

    Insurance is a big worry for me. We have insurance, but it is always a big problem if my husband wants to change jobs, or we start a new company, or whatever. Right now, we have our own company, but we only have two employees on the insurance, and one is leaving, so that disqualifies our group! I haven’t figured out yet what to do.

  • 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.

I really think the HIPAA law has helped us (cancer families) a lot. Before then, no insurer could really afford to write a good policy that would be free of pre-existing condition hassles, because then everyone with pre-existing conditions would switch over to them at once. It would be like putting a big “KICK ME” sign on the insurer: “If you’re expensive, come to us!” They’d have to raise rates to compensate for the higher claims, and the “good” risks would bail out for cheaper competitors.

With HIPAA, all insurers are forced to take the bad risks. And they did all raise their rates to compensate. But no one insurer got hammered with all the bad risks and high rates, because they all had to adapt at the same time.

It’s not perfect. If you are stuck without insurance at all at diagnosis, you’ve got a whole year of exclusion ahead of you. But it really does work pretty nicely for families that can keep at least one steady full-time job with benefits going at all times, even if that job changes.

ERISA, COBRA, and parts of HIPAA are enforced by the Pension and Welfare Benefits Administration of the U.S. Department of Labor, (866) 487-2365 or 866-4-USA-DOL ( ).

To obtain more detailed information about insurance issues:

  • Read the 2004 edition of A Cancer Survivor’s Almanac: Charting Your Journey , edited by Barbara Hoffman, J.D.

  • Get the booklet What Cancer Survivors Need to Know about Health Insurance from the National Coalition for Cancer Survivorship.

  • 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 .

More information about these books and organizations is available in Appendix B .

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 .

I’m Canadian so I have insurance through the province. I have a plan so I can’t be denied medical care. Some things are excluded, like cosmetic surgery. The insurance is paid for through my wages. If you want extras like a semi-private room or dental care, your employer would have to have an additional plan. Through my work I have 100 percent of my prescriptions covered, prosthetics, semi-private room, and out-of-province medical care. My boss actually complained about premiums going up because of me, but I just said, “Sorry, it wasn’t like I could help it.”

Free or low-cost medicine programs

Survivors often need expensive medications, and they sometimes cannot afford them. Most major drug companies have patient-assistance programs, and you can apply to obtain free or low-cost prescription drugs. Although each company has its own criteria for qualification, in general, you must:

  • Be a U.S. citizen or legal resident.

  • Have a prescription for the medication you are applying to get.

  • Have no prescription drug coverage for the medication.

  • Meet income requirements.

You may qualify even if you have health insurance, if it does not cover the medication prescribed to you. For expensive medications, the income cut-off is high, so it is worth investigating whether or not you qualify. Several organizations that can help you find and apply to patient-assistance programs are listed in Appendix B . Because the application process takes time and includes obtaining information from your physician, plan ahead so you do not run out of medication.

Our insurance does not cover the growth hormone that my daughter needs. Her physician cannot believe that our insurance company denied coverage for a survivor with a history of radiation to the brain and multiple late effects to the endocrine system, but that’s our situation. The medication is incredibly expensive. We applied to a patient-assistance program and were thrilled to find out that we qualified if our adjusted gross income was less than $100,000 a year. The application process the first year was hard and took a few months, but now we just fill in a form and send in our tax return every year, and she is requalified. We get a shipment of growth hormone every 3 months and keep it in the fridge.