Surviving Cancer Is Half the Battle for Advocates of Insurance Reform

Selma Schimmel has beaten cancer, and she’s now taking on the U.S. government and the health insurance industry.

The 36-year-old founder of Vital Options, the Studio City-based support service for young cancer survivors, wants the Bush Administration and Congress to tighten what she considers to be discriminatory loopholes in medical insurance coverage.

As a board member of the sponsoring advocacy group, the National Coalition for Cancer Survivorship, Schimmel heads a nationwide petition drive calling for, among other things, the elimination of pre-existing conditions as a disqualification for health insurance coverage.

“This is an issue that not only concerns cancer survivors, but all segments of our society,” Schimmel said. “The inability of people who have suffered catastrophic diseases to get adequate health insurance is causing severe financial and emotional hardship to hundreds of thousands of people in our nation.”

Schimmel says statistics show that one out of three Americans develops cancer and that up to 50% of the cases are curable with early diagnosis and appropriate intervention.

Many other life-threatening diseases now are also having increasing survival rates, but according to Dr. Cary Presant, a local chairman of the American Cancer Society, survivors are having a hard time getting or keeping insurance.

To underscore the urgency of the situation, the petition drive was begun in June in key cities throughout the country.

It was the coalition’s original intention to get signatures of as many cancer survivors as possible and then send the petitions to President Bush on the Fourth of July.

Now the drive has been extended, according to Schimmel, because of the interest of other groups and individuals.

“Realizing how broad-based the support is for the issues addressed in the petition, the NCCS is now inviting a wide range of other organizations to join the drive, including Easter Seals, the March of Dimes, the National Multiple Sclerosis Society, the American Heart Assn., the American Lung Assn., the National Cystic Fibrosis Society and the Diabetes Society of America,” she said.

Petitions are being sent to those national organizations so that their administrators and members can join in the effort, Schimmel said.

Once the petitions have been circulated and collected, they are expected to be sent to a high-level government official, as yet unnamed, who will make the presentation to Bush and/or Congress.

Schimmel said the coalition hopes that by using these means of delivering the petitions, the effort will not be lost in the Washington bureaucratic shuffle.

“This is a life and death issue for many,” she said. “Not only are people who have had a catastrophic illness being denied medical insurance, or being offered limited coverage, many are being denied appropriate treatment because of insurance loopholes.

“In order to get out of paying for a treatment, insurance companies routinely disallow claims by saying a particular drug is being used in a non-sanctioned way, or the treatment itself has not been approved,” Presant said.

Presant considers this argument specious because “medical doctors are continually arriving at new ways and new combinations of ways to better use available drugs and therapies.”

A Gallup survey, co-sponsored by the National Cancer Institute earlier this year, reported that more than half of the 200 doctors questioned had problems providing their treatment of choice to patients because insurers refused to pay the cost.

According to a federal survey released in April, 76% of 289 oncologists who responded reported an increase in payment denials over the past year, citing Medicare and Blue Cross as the primary offenders.

“We’re not talking about insuring jewelry or boats here,” says Dr. Leslie Botnick, director of radiation oncology at St. Joseph Medical Center in Burbank. “What we’re talking about is people’s lives.”

Botnick says the situation is totally out of control.

“Some people lose their insurance when they have a catastrophic disease, others find they are being priced out of reasonable coverage,” he said.

Botnick said that some surviving cancer patients find their premiums skyrocket to as much as $1,000 a month. There are other problems as well.

“When people survive catastrophic diseases, they are no longer free to move to another job. They know they will probably not be able to get group medical insurance, or if they do, that it will exclude the survived illness,” Botnick said.

This can also be true if the spouse of someone covered by group insurance gets sick. “If the covered spouse changes jobs, he or she may not be able to get insurance for his or her mate,” Botnick said.

Tony Harris, a spokesman for Blue Cross of California, said his company does not systematically reject claims or cancel policies when people develop catastrophic diseases.

“That’s what major medical insurance is all about,” said Harris, director of corporate public relations for Blue Cross of California. “We pay up to the policy maximum.”

Although he allowed that his company does reject certain treatment programs, he said there is a good reason to do so.

“We do not sanction experimental treatments because, in our judgment, there is not sufficient data to guarantee their safety,” according to Michael Chee, a member of Harris’ staff.

Both men agree there is an industrywide reluctance to insure new clients who have or have had catastrophic diseases, because, according to Chee, it would create a hardship on the rest of the Blue Cross policyholders.

“People who have or have had catastrophic diseases tend to need more treatment, and those costs would have to be passed along, through rate increases, to our other subscribers.”

Chee added, however, that the state of California and Blue Cross have begun a joint venture in which reasonably priced coverage is offered to people who have become uninsurable.

The program, initiated in January, is called Major Risk Medical Insurance and anyone in California who has been turned down for coverage is eligible, Chee said.

Although this is a welcome development, according to the NCCS petitioners, no one knows yet how it is going to work out, and it offers nothing for people who do not live in this state. It also fails to address the problem of treatment selection and overall insurance cost, Schimmel said.

Botnick said a national medical health insurance commission should be created immediately: “There should be someone or something to which the medical insurance industry has to answer.”

Although both Presant and Botnick say that people are now starting to sue and win in medical insurance discrimination suits, Botnick points out that the court system takes a lot of money and time. “People who are dying often don’t have the time or money.

“I think it goes without saying that everyone in America should be able to get affordable insurance.”

However, nearly one out of 10 Americans doesn’t have any, according to published reports, and Schimmel points out that, eventually, almost everyone is going to need the resources of a health insurance company.

Schimmel said the government must recognize the seriousness of the situation and address it now. “If we don’t have healthy people we won’t have a healthy country,” she said.

And Botnick says that some people pay into insurance policies for 20 or 30 years, then, after they make their first major claim, are locked out of the system by some companies. “You can’t tell me that a carrier that has collected $70,000 from someone over the period of his or her life can’t afford to continue coverage,” Botnick said.

For Schimmel, the reality of facing a life-threatening disease, coupled with the risk of losing her insurance and a host of other problems, came early in life.

At 28, she went to her doctor with a lump in her breast. He told her she was too young to have cancer, as did two other physicians.

They were wrong.

After several procedures, including surgery, she received a clean bill of health but her problems were only beginning. The emotional toll had been heavy and she needed support.

“I was young, with my whole life in front of me and working at UCLA for a degree in medical sociology, when cancer hit,” she said. “I was devastated.”

Schimmel went to a number of support groups looking for help but found most of them geared to people in their 50s and 60s whose problems were not like hers. “I wanted to know how to deal with relationships and marriage, and my own fears for the rest of my life,” she said.

Realizing that there were other young people out there with similar frustrations, she started her own group, which turned into Vital Options.

“It is meant for cancer survivors between the ages of 18 and 40,” Schimmel said, “and we consider someone a survivor from the day he or she is diagnosed.”

The organization today offers ongoing drop-in support groups in its Studio City offices as well as other locations in Long Beach, Orange County, the San Gabriel Valley and San Francisco. There is also a Spanish-speaking group at Olive View Medical Center in Sylmar and a family and friends group.

To better serve her clients in the organization that now takes all of her workdays, Schimmel has aligned her group with cancer survivor umbrella and coalition groups such as NCCS.

“In addition to the multiple issues we as cancer survivors, and we as a nation, face about health insurance, there are other ancillary ones that need attention,” she said. “People who have had cancer or other catastrophic illness are not only systematically locked out of the health-care system, but they can be locked out of jobs.”

That situation often has nothing to do with a person’s ability to do a job or his or her health, according to Schimmel, but is directly related to the employer’s perception about the person’s ability or impact on the company health plan.

She says the coalition is mad and is not going to take it anymore.

“The member organizations of the NCCS have been fairly subdued in our advocacy until now,” she said. “But we have been impressed by the success of various AIDS groups in pressing their concerns more actively and we plan to follow suit.

“The insurance situation will only get worse if the government does not take a leadership role in regulating the system, she said.

“We are going to do what we can to bring focus and resolution to the situation.” Schimmel said.

Reilly is a regular contributor to Valley View.