Who’s Got You Covered?

Cancer survivors in this country live in two very different health insurance worlds: the golden land of group coverage for the lucky ones, and a rocky desert for everyone else.

The good news is the majority of cancer survivors are covered by Medicare. In addition, many have group coverage. As for the rest, including an estimated 11 percent of cancer survivors who are uninsured, getting—and keeping—individual policies essential to their long-term health can be a financial nightmare.

If you can, attach yourself to employer-sponsored health coverage—that’s one of the most important rules for cancer survivors,” says Karen Pollitz, MPP, a Georgetown University research professor and project director of the university’s Health Policy Institute. “Group coverage is the gold standard. If you have to sweep the floors in a factory to get it, it’s worth it.”

Group coverage has many protections under federal and state laws that individual coverage probably does not, although there is an exception in a handful of Northeastern states, Pollitz says.

Workers and their dependents under group plans cannot be kicked out of the plan or charged higher premiums after going through cancer, health care experts say. And group plans have open enrollment periods where there is no health history inquiry, so cancer survivors can join without fear of being rejected.

If you already have group coverage, the experts recommend hanging onto it no matter what—which can, unfortunately, sometimes lead to “job lock” for survivors or their spouses.

“Be sure to talk to your employer before you take a leave of absence or if you want to work part-time,” advises Jerry Flanagan, health care advocate for the Foundation for Taxpayer and Consumer Rights in Los Angeles. “Even if you have to take a cut in salary or cut back on other benefits, it’s likely worth it to hold onto the plan.”

Cancer survivors’ attempts at getting health insurance coverage are slim if they don’t return to jobs covered by a group policy or if they work for employers who don’t have insurance. Today, half of all small businesses do not offer any type of insurance, Pollitz says.

Survivors with individual insurance plans, which are regulated by the state in which the person lives, can see high increases in premiums as a result of a cancer, even if the cancer is in remission, she says.

People who have lost their jobs because of their illness or were not covered by health insurance before their cancer diagnosis also will have difficulty finding an insurer to cover them in an individual plan at a reasonable rate—or at all. Also, the private market frequently denies coverage for pre-existing conditions, for a certain time period in some plans or forever in others, Pollitz says.

“If you’ve had any kind of cancer in the last five years, you will probably be turned down,” she says. “If it’s been more than five years, you might be fine, but some companies might turn you down, while others might charge as much as 50 to 60 percent more.”

Catastrophic or major medical coverage—limited policies that cover medical expenses after very high deductibles—can also be difficult for cancer survivors to obtain because insurers look for a clean health history, consumer advocates say.

A major nationwide survey released this year showed that about one in 10 cancer survivors could not buy health insurance because of their cancer diagnosis, and 6 percent said they lost their coverage as a result of the disease.

The survey, conducted jointly by USA Today, the Kaiser Family Foundation, and the Harvard School of Public Health, also showed the effect of cancer on survivors’ finances.

Even those with uninterrupted health insurance coverage had problems: One in five used up all or most of their savings to pay for what insurance wouldn’t. One in 10 borrowed money from their relatives, and 9 percent had been contacted by a collection agency.

The hardship was even worse for those with inconsistent or no health coverage. Twenty-five percent of those without insurance said in the survey that they had delayed or decided not to get treatment because of the cost; half used up all or most of their savings; and one in three sought the aid of a charity or public assistance program.

For those seeking individual coverage, it’s vital to know state laws.

Forty-five states allow insurers to underwrite their plans based on medical history, and each insurance company has its own guidelines. Underwriting guidelines determine how risky it is to insure a person, typically based on five years of health records provided by the applicant. The process also helps set the monthly premium to be paid by the applicant, if accepted.

State insurance commissions oversee underwriting for individual policies, and there is a huge difference in regulations from state to state, Flanagan says.

“California is the Wild West of underwriting,” he says. “The health insurance companies have always had free rein in how they underwrite here. We recently received the underwriting guidelines for four big plans, and they refused coverage for a whole range of pre-existing conditions, including cancer.”

This lack of protection forces survivors of cancer and other diseases to cling to group health insurance, rather than allowing them to take time off after their cancer or buy individual policies, Flanagan says.

“In the last five years there has been a huge consolidation of the industry,” he says. “One result of that consolidation is that they are starting to exclude even people who are cured.”

Early this year, as part of his health care reform plan, California Gov. Arnold Schwarzenegger announced that he supports oversight by the state that would prevent insurance plans from denying coverage based on pre-existing conditions.

Such oversight—called guarantee issue—dictates that insurers cannot turn down applicants based on their health or risk status. Five states in the Northeast have such a regulation: Maine, Massachusetts, New Jersey, New York, and Vermont, says Kevin Lucia with Georgetown’s Health Policy Institute. A few other states, such as Pennsylvania, say Blue Cross/Blue Shield must offer guarantee issue, while others, such as Arizona, require that some individuals leaving group plans must be allowed into individual plans (see www.healthinsuranceinfo.net for details).

Another important feature, found in just a handful of states, requires that health insurers not charge more for consumers who have pre-existing conditions, or because of age or sex. This is called community rating. While some states are moving to add such protections to individual policies, most do not have such provisions.

For the cancer survivors among America’s 45 million uninsured—or survivors who join those ranks because they leave their company, or their employer drops their insurance or goes out of business—there are some options.

A survivor who was on a group plan and loses it can continue coverage under the plan for up to 18 months, or in some cases 36 months, under a federal law known as the Consolidated Omnibus Budget Reconciliation Act, or COBRA. The downside to COBRA coverage is its cost, Pollitz says. Typically employees pay 20 percent of the cost of their health insurance, but a worker must cover the entire cost under COBRA coverage, she says.

High-risk insurance pools are another option, although these plans are also pricey. Today, 32 states have these for people who cannot find insurance elsewhere. Consumers cannot be denied coverage under these plans, but like policies in the private market they often have exclusionary periods of six to 12 months for pre-existing conditions, Pollitz says. Some of the plans also can have limited coverage for drugs and services such as mental health care.

Across the United States less than 200,000 people are covered by this insurance, says Pollitz. “There’s a reason for this,” she says. “There are layers of barriers to get in high-risk pools, and it’s really expensive—premiums are generally 50 percent to twice as high as what you’d see in the private market for the healthy.”

In many state programs, premiums can be up to $700 a month for a 45-year-old, she says.

One exception to this trend is Maryland’s high-risk pool, which has lowered its premiums, does not exclude pre-existing conditions and does not limit coverage, Pollitz says.

“Most states try to run the program on a shoestring, and you just can’t,” she says. “For most, the high-risk safety net is not really there for them.”

Another strategy for uninsured cancer survivors is to negotiate prices with your doctor or clinic for post-cancer care. Advocates say to be honest about your financial situation with your health care providers, who often are willing to work with their patients on cost. Also, there can be a wide disparity on costs for the same services among local hospitals. Find out where your physician has privileges, and don’t be afraid to compare costs for procedures and testing through the hospitals’ business offices.

Low-cost care can be obtained in other ways as well. Cancer and other health screenings and services are becoming more available, especially for those with low incomes. These services can be found by calling your doctor or local hospital, or checking with a community service such as United Way or in local advertising and flyers sent out by medical facilities.

The American Cancer Society has a new demonstration program called the Health Insurance Assistance Service, says Christy Schmidt, senior director of policy for ACS. The program started in 2005, after ACS noticed that about half of the calls to its toll-free number were insurance-related problems, she says.

Cancer survivors are among those calling for advice, Schmidt says.

“With follow-up care for the first one to three years after cancer treatment you see the doctor a lot,” she says. “You could see two doctors every two months, have three CT scans a year and blood tests every month—it all adds up.”

The Health Insurance Assistance Service is a call center of specially trained personnel to work with callers who have insurance issues, Schmidt says. So far, the program is in about half of the states.

A call to ACS led Gail Carey, a 54-year-old cancer survivor from Long Island, New York, to a program that she says “literally saved my life.”

After finding a lump in her breast in 2001, Carey says she lost her job and her insurance. “It felt like the bottom of [the] well had just dropped out,” she says. “I didn’t want to go to the doctor to incur expenses I knew I couldn’t pay.”

ACS found Carey the newly created Healthy Women’s Partnership, New York’s version of the National Breast and Cervical Cancer Early Detection Program. Now in all 50 states, the NBCCEDP program is designed for low-income, uninsured women and is sponsored by the federal Centers for Disease Control and Prevention.

A screening found cancer in Carey’s breast. Within three days, she says, the Healthy Women’s Partnership had scheduled her surgery for a partial mastectomy, followed later by a mastectomy, chemotherapy, and radiation—all for no cost through Medicaid, which also covered follow-up care.

Now cancer-free, Carey has a job as a medical receptionist and is back on a coveted group plan.

“I’m fully insured now and there’s no problem with my coverage,” she says. “We just have to learn to speak up. We’re not looking for a handout; we’re looking for a hand up.”