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Cancer survivors in the US complain about health insurance problems more than any other issue except cancer itself.

Open enrollment is the time period during which you may change plans without a medical examination or questionnaire....

If your income is low, your state may pay your Medicare premiums as part of Medicaid benefits.

Ten versions of MediGap insurance are available....

Always apply for unemployment insurance if you lose your job....

[C]onsider a long-term care policy as a safeguard against financially crippling nursing-home or nursing-care costs.

Insurance Issues

The following excerpt is taken from Chapter 15 of Colon & Rectal Cancer: A Comprehensive Guide for Patients & Families by Lorraine Johnston, 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.

For colorectal cancer survivors, problems may arise with health insurance, unemployment insurance, or life insurance. Of these, health insurance is the most likely to cause heartache, frustration, and anger, but first, we'll discuss the main impediment to purchasing all kinds of health, life, disability, and care insurance: medical underwriting.

Restrictive medical underwriting

State and federal authorities have begun to address the problem of health insurance being denied to those with serious illnesses (for which see COBRA and HIPAA, discussed later in this section), but purchases of life, long-term care, and other insurance policies are still impossible or expensive purchases for those with a cancer diagnosis.

The impediment is the medical examination or medical history questionnaire. If the policy is indeed offered to you after the actuaries have examined the statistics for your illness, it may be offered only with very high premiums. Moreover, employers who have no annual open enrollment period may refuse to ever insure you if you did not elect certain insurance options at time of hire, which is their only open enrollment period.

When my husband changed jobs, we decided to just add his name to my employer's medical policy in order to save money and have one provider. What we didn't realize is that his employer did not have annual open enrollment--the only time he wouldn't be asked about his health was when he was hired.

After he was diagnosed with cancer, I wanted to change jobs. By then, I'd heard horror stories about changing jobs and losing coverage because pre-existing conditions were excluded. I asked him to follow up with his employer to see if he could enroll for their medical insurance. They referred him to the policy's underwriters. (That should have given us a hint of what was to come.) "We will never insure you," they said. This meant I could never leave my job.

Since then, his employer's policy has been renegotiated for more leniency, and federal laws have been passed to look after the medical insurance needs of people like us. But it was a bitter experience.

If your insurance needs are unmet, you should consider any offer that states that medical underwriting--insurance jargon for a close scrutiny of your health--is not necessary. Some advertisements state very clearly that a medical exam isn't necessary, or that pre-existing conditions will not result in refusal.

Note that some medical questionnaires for insurance enrollment ask health questions but do not mention cancer, not even in the section titled "Other." It's always worthwhile to ask for an application form to see just how rigorous the medical scrutiny may be.

Of course, while most of these offers may be aboveboard, a proportion of these policies may be very expensive. The usual considerations for shopping wisely still apply, but if your insurance needs are great, or your estate planning justifies purchasing a whole-life policy that might bypass estate and inheritance taxes, for example, the additional cost may be worth it.

Insurance companies are evaluated by A.M. Best, Moody's, and Standard and Poor. Choose only those with top ratings.

Health insurance

Cancer survivors in the US complain about health insurance problems more than any other issue except cancer itself. The delays and denials of managed care are the most common complaint, but other insurance issues also arise.
I have battled with insurance companies and won. I start at the top when things don't go my way. I call the state insurance commissioner. That office can make a difference. My next call is to the state attorney general's office.

I had one doctor who failed to respond when I asked for a copy of my records. After three phone calls, I wrote him a letter. The records were in the return mail. You can even pose more of a threat to them by sending it by certified mail, signature required. This way you will know who picked up the piece of mail.

Back in 1997 I wanted to sell a small business, but since I had a group policy, I had to keep the business until the Kennedy-Kautzenbaum bill that protects the portability of an employee's health insurance passed and became law. Maine had no problem giving me insurance; however, Florida thought they found a loophole and would not provide insurance to my ex-wife due to pre-existing conditions. I ended up writing to the insurance commissioner and then emailed my state senator. It took us a while, but we did prevail, and got the insurance.

If your medical insurance plan is in some way lacking, find out if your employer:
  • Offers more than one medical insurance plan.
  • Holds an open enrollment each year. Open enrollment is the time period during which you may change plans without a medical examination or questionnaire, that is, without having your pre-existing health conditions held against you.
If so, use the open enrollment period to upgrade to a better policy. Examine all plans closely for what they cover, especially for coverage of care given under the auspices of a clinical trial. Weigh an indemnity or preferred-provider plan, which may trade higher convenience for lower coverage, against a high-coverage HMO requiring referrals and gatekeepers. The indemnity plan may cost more per doctor visit, but may provide you with the freedom to get care wherever you think best, without the delay of preapproval, including out-of-state care within a clinical trial, or at a distant but excellent cancer center.

If you have been approved for Social Security Disability Income (SSDI, discussed under "Disability income," later in this article) you'll be automatically enrolled in Medicare after getting disability benefits for two years. Moreover, Medicare coverage is free for 39 months after returning to work if you're still disabled. If your income is low, your state may pay your Medicare premiums as part of Medicaid benefits. Contact your local Social Security Administration office for more information.

Losing medical insurance coverage if you change or lose jobs is still a problem, but less of a problem than before. In addition to various state laws, two federal laws exist to help you retain coverage:

  • HIPAA, the Health Insurance Portability and Accountability Act of 1996, is a federal law intended to prohibit the permanent denial of medical coverage based on pre-existing conditions. HIPAA covers only employers with 20 or more employees. In general, it states that if you have had continuous medical insurance coverage for more than 12 months, your new medical insurance company cannot refuse to pay for medical care for your previous health problems. If your previous health coverage was for less than 12 months, each month you were covered reduces by one month the amount of time your new medical insurance company can refuse to pay for your previous health problems. No medical insurance company, however, can refuse to pay for your previous health problems for more than 12 months. There are loopholes in this law, though, that medical insurance companies might exploit. Some companies define a change of coverage from husband-and-wife to family coverage, for example, as a switch to a new plan, which could, in theory, restart the 12-month clock. In July 1998, President Clinton issued a warning to insurance companies covering federal employees, stating that such denials of payment will not be tolerated.

  • COBRA, the Consolidated Omnibus Budget Reconciliation Act of 1985, provides for a continuation of your old employer's medical insurance coverage for a temporary amount of time--from 18 to 39 months, depending on your circumstances. Always elect COBRA continuation coverage if you lose or change jobs, until you're certain that your new employer's policy will cover expenses associated with your care. HIPAA, discussed above, does not always provide the continuous coverage the law intended, owing to its design and various loopholes.
Some states have older, stricter laws that resemble HIPAA but provide better coverage. Call your state insurance commissioner for details, but note that self-insured employers, which generally include very large businesses, are governed by the federal Employee Retirement Income Security Act of 1974 (ERISA) laws that override state laws.

Self-insured employers may hire a medical insurance company, such as Blue Cross, to administer their plan. The insurance information you receive, such as explanations of benefits, may contain the insurance company's letterhead, but your employer is bearing the exact and full cost of your care at the time it is incurred, instead of paying large indemnity premiums in advance.

ERISA was a piece of legislation intended to safeguard employee pension rights, but it has impacted employee health insurance as well, and in confusing ways. For example, owing to the overlap of state and ERISA regulations, self-insured employers cannot be sued in state courts for failing to pay claims. For this and other reasons, disputes about health insurance claims can become very complex and may require the assistance of an attorney.

Shelly describes his unhappiness with his HMO:

I'm on the Freedom Plan, which is a misnomer. Here Zofran is about $25 or so a pill--wonder what they will think if my oncologist gives me a month's supply? I can almost see the rejection and frustration now. I am going to ask for a prescription tomorrow because Zofran so far is helping me.

I had a major problem with my HMO not wanting to pay for Prilosec that I must take on a daily basis to prevent acid reflux. They wanted me to buy the over-the-counter Zantac tablets. Finally I got my oncologist to write them a letter and they agreed to continue paying for my prescription Prilosec.

If not for the HMOs in this country, a lot of us would have a better chance of living longer. The doctor said I should avoid stress. How can I when my HMO drives me nuts at least once a month by refusing to pay a bill?

Medicare and Medicaid

Medicare is not just government-supplied medical insurance for those over age 65. If you have been entitled to Social Security Disability (SSDI) benefits for the past two years, you are eligible for Medicare.

Most frequently we hear of Medicare Parts A and B, but much fuller (and more expensive) coverage may be provided by purchasing Medicare Supplemental Insurance, often called MediGap insurance. Ten versions of MediGap insurance are available, identified as A through J, with J providing the highest coverage.

Medicaid is a health payment program for the financially needy that is run jointly by the federal government and each state government. As such, its rules and benefits vary greatly depending on where you live. Examples of those who may qualify are recipients of Aid to Families with Dependent Children (AFDC), those receiving the Social Security's Administration's Supplemental Security Income (SSI), or certain nursing home patients.

For more information on either Medicare or Medicaid, see the Mercer Guide, which is published yearly and is readily accessible in libraries and bookstores.

Unemployment insurance

Always apply for unemployment insurance if you lose your job, are laid off, or if your hours are substantially reduced. Never assume that you're not eligible. Apply even if you have a suit pending for wrongful discharge.

Unemployment law and the granting and calculation of benefits are very complex, and vary from state to state. In order to find information that's appropriate for your circumstances, you'll need to research the laws for your state, either on your own or with an attorney who specializes in these cases.

Life insurance

Life insurance that you buy as an individual is likely to be terribly expensive, if at all available, once you have had cancer. As mentioned in the section called "Restrictive medical underwriting," if you have an opportunity to buy a good life insurance policy at a reasonable rate without a qualifying medical examination or other penalty for having a cancer diagnosis, consider the opportunity carefully.

Some employers offer life insurance policies requiring no medical exam with face values in multiples of one's annual salary. Although this usually is term coverage instead of whole life coverage, it may meet your family's needs very well. Some such policies can be kept even if you leave the company.

Whole-life policies often can be borrowed against, or sold in a viatical arrangement to a company that will buy your policy from you at less than its face value in order to provide you with money now. This is a useful option if your heirs don't need your money, but you do, in order to pay current bills. Generally, viatical settlements require proof of terminal illness.

Check your existing life insurance policies for a clause that states you needn't pay premiums if you're receiving disability benefits.

Long-term care insurance

Now more than ever, you should consider a long-term care policy as a safeguard against financially crippling nursing-home or nursing-care costs. As with life insurance policies previously discussed, however, you're not likely to be able to find or afford a long-term care policy once having had a cancer diagnosis, unless one is offered at group rates with no medical examination required.

One very good option is to ask your children and their spouses if their employers offer such a policy for parents or in-laws as well as employees. This recent trend in employment benefits offerings is an attempt to recognize the increasing responsibilities that families face in caring for their older relatives while trying to work outside the home.

Many long-term care policies are eventually dropped by the client because they are so expensive, and the probability of needing long-term care seems so far away. If expense is an issue for you, you might choose a policy that has a clause that allows you to stop paying premiums after a number of years in return for lower benefits or payments over a shorter time. This compromise, while not ideal, will afford you at least some protection against potentially devastating long-term care costs.

Long-term disability insurance

Employers often offer long-term disability insurance at reduced rates or for free. If you can elect or purchase such a policy, do so. Although the Social Security Administration can pay you long-term disability under some conditions, often it's temporary, and frequently policies available in the private sector pay a better monthly benefit.

Note that most long-term disability policies encourage you to apply for SSDI, and then pay you only the difference between SSA' s monthly benefit and the higher benefit your policy authorizes.

Some long-term disability policies can be taken with you if you leave your employer. Choose only a policy marked guaranteed renewable, so that your policy cannot be canceled if your health gets worse.

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