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Childhood Cancer Survivors

"The more money they make, the less they care about whether you had cancer."

"Bottom line: tell the truth on your forms"

[Y]ou may be eligible for group policies through...other special interest groups.

Some states have their own healthcare plans as well.

Parents may need to apply for a "Katie Beckett waiver."

CHIPS, also called "high-risk pools," are a means for individuals to obtain insurance regardless of their physical condition or medical history.

"With Kennedy-Kassebaum, all insurers are forced to take the bad risks."


The following excerpt is taken from Chapter 4 of Childhood Cancer Survivors: A Practical Guide to Your Future by Nancy Keene, Wendy Hobbie & Kathy Ruccione, copyright 2000 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

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 isn't 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 you need it or not. 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 in the following situations:

  • If you have no dependents (spouse, children, elderly relatives who require financial support).
  • If 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 also 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 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.

•  •  •  •  •  

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.

To find out what information insurance companies have about your medical history, contact the Medical Information Bureau (MIB) at (617) 426-3660. MIB is the largest private health information bank on the continent. Individuals (survivors or physicians) can contact the company to check the accuracy of their files.

There are several ways to obtain life insurance:

  • You or your spouse 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 usually provide excellent coverage at reasonable rates, and often have no waiting period for pre-existing clauses.
  • 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. He 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 (waiting period). After the waiting period has passed, you will have full benefits.

When applying for 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 question 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 say 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 five years?" So I thought, "Okay, the BMT was six years ago and she was effectively off treatment one year past that. That's five 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. This is risky for health coverage and puts your family in financial jeopardy if you die. 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.

•  •  •  •  •  

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 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.

Grace Monaco of the Childhood Cancer Ombudsman Program makes the following recommendations:

Bottom line: tell the truth on your forms. However if you are off treatment for many years and are denied coverage--follow up. Ask for the guidelines that they follow to determine when you would be eligible for a rated policy, and when would you become a "normal" risk. If they stonewall you or if the response is effectively "never," find out from other survivors or parents (through your late effects clinic contacts) who is being covered on individual policies. Go to your insurance commissioner about uneven coverage policies and let the Childhood Cancer Ombudsman Program know about your story. You may indeed have a legal grievance against the company denying you coverage. Even if you find another policy that will cover you, please follow up on the one that won't--it is the only way we will get the "bad eggs" out of the business of unfair treatment.

Health insurance

As survivors mature, seek employment, and move away from home, many encounter 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. Current discussions about national healthcare reform are extremely contentious, so it seems unlikely that major reforms of the American health insurance system will occur in the near future. Therefore, you must evaluate various options to get adequate healthcare for yourself and your family.

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.

Health history quickly becomes an issue if you have to apply for health insurance. Some companies consider a five-year remission acceptable, while others exclude all cancer survivors from their life 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 US 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, and county health programs.

Group policies

The easiest way to get insurance is for you or your spouse 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 from health coverage. In many cases, you will not be required to answer any questions at all 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.

•  •  •  •  •  

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 two 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. The Encyclopedia of Associations, available in the reference section of most public libraries, includes information on 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 can 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 Office of the Insurance Commissioner can tell you whether this is an option.
  • You can get coverage through your spouse'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.

•  •  •  •  •  

I shopped for health insurance from 1985 to a few years ago. I had Hodgkin's disease, stage IIb. In 1977 I was told that if I had been diagnosed in stage I, I would be insurable. Because it got to stage II, I was either turned down or given a rider on the policy.

The rider was vague. Paraphrased, it said, "Anything related to or caused by Hodgkin's disease will not be covered." In my mind, most any illness I might contract could be "related to or caused by" HD since it affects the immunity system. I was told I could ask specific questions to better understand this waiver, which I did. The reply was that each case of illness would be judged at the time of occurrence.
I couldn't see paying for a policy only to hear "not covered" as illness took its toll on me. I was only looking for major medical coverage. We can handle the small illnesses financially.

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

Government healthcare plans in the US

The US 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 (Tricare) and, through the Veterans Administration, for former military personnel. Some states have their own healthcare plans as well.

I was always covered by military insurance because my father was in the military. Right after high school I went to Germany for a year. I had a heck of a time finding someone who would insure me. We finally found a company that would insure someone who had had a life-threatening illness.
  • Medicaid. Medicaid is a joint federal/state insurance program for those who are not senior citizens. It 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 aids. Phone your local or county service department to find the number for the Medicaid office in your area.

    Disabled adults and children who qualify for SSI also qualify for healthcare coverage via the federal Medicaid plan. SSI is normally available only to people with serious health impairments and either low family income (for children) or limited ability to earn a living (for adults).

    I've always been able to get health insurance through my jobs. The state does not provide it. Right now I'm on Social Security so I access Medicare. I think what has helped me is that my diagnosis was so long ago and I never had a recurrence. People with more recent diagnoses are not so lucky getting coverage.

    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 one dollar per month, but the beneficiary will get full medical coverage.

    Parents may need to apply for a "Katie Beckett waiver." The Katie Beckett waiver is for children who would be eligible for SSI, but whose parents' income is too high to meet the financial requirements. The program is administered at a state level. Some states have severely limited the number of Katie Beckett waivers they will allow. You must apply for SSI and be turned down to qualify. When you are denied SSI, ask for a written proof of denial. Next, contact your county Child and Family Services department and ask for a Medicaid worker. Schedule an appointment with this person to apply for a Katie Beckett waiver.

  • 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

    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 (CHIPS). The majority of states offer high-risk individuals, like 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 on CHIPS, call your state Office of the Insurance Commissioner. The NCI publication Facing Forward (see Appendix B) lists contacts by state for insurance coverage for the hard to insure.

If you have specific problems accessing appropriate medical benefits under Medicaid, state health plans, or other public healthcare plans, your caseworker 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 Association of Protection and Advocacy Systems in Washington, DC, (202) 408-9514. You could also consult the Health Law Project at (800) 274-3258.

Legal protection

Although neither the states nor the federal government mandate a legal right to insurance, there are some legal remedies to insurance discrimination.
  • COBRA. The Comprehensive Omnibus Budget Reconciliation Act (COBRA) is a federal law which requires public and private companies employing more than twenty workers to provide continuation of group coverage for eighteen 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 twenty 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 by 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 protects workers from being fired because of the cancer history of the employee or beneficiaries (spouse and children). 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 (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 ("Kennedy-Kassebaum law"). This law allows individuals to change to a new job without losing coverage if they have been insured for at least twelve 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 Kennedy-Kassebaum 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 Kennedy-Kassebaum, 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 fulltime job with benefits going at all times, even if that job changes.

ERISA, COBRA, and parts of the Health Insurance Portability and Accountability Act of 1996 are enforced by the Pension and Welfare Benefits Administration of the US Department of Labor, (202) 219-8776.

To obtain more detailed information on insurance issues:

  • Read A Cancer Survivor's Almanac: Charting Your Journey, edited by Barbara Hoffman, JD.
  • Read Consumer's Guide to Getting and Keeping Health Insurance on Georgetown University's web site.
  • Get the booklet What Cancer Survivors Need to Know About Health Insurance from the National Coalition for Cancer Survivorship.
  • Consult the Chai Lifeline. They have insurance experts who can help explain benefits, help complete claim forms, and show you how to maximize your coverage. Contact the national office at (888) 2 CHAILIFE.

Canadian health insurance

The Canada Healthcare Act ensures coverage for all Canadian citizens and non-citizens who require emergency care. 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. Waiting lists are a reality, but many people find that calls and letters from family and primary care physicians can open up slots.

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."

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