A Wisconsin woman with breast cancer recently sued her health maintenance organization, claiming that its inadequate screening procedures caused a potentially fatal delay in her diagnosis.

Whatever the facts of the case, overall, this type of dispute may become increasingly rare. Breast cancer patients’ rights are more extensive than ever after more than a decade of advocacy at the national and grass roots level.

Even so, as women are reeling from the shock of a breast cancer diagnosis, they must begin boning up on patients’ rights and plotting strategies for getting appropriate medical treatment.

“It can be very taxing when women have bigger battles to fight,” says Barbara Ullman Schwerin, a lawyer and director of The Cancer Legal Resource Center in Los Angeles, a source of legal information and advice to cancer patients.

Taxing, yes, but necessary. Dealing with insurers can be delegated to a family member or friend, but getting educated about the illness, treatment options and policy limits is something women must do in order to make informed decisions, adds Schwerin.

Since most policies pay for basic tests, surgery and conventional treatment, coverage disputes generally center on so-called experimental treatments and participation in clinical trials, which can represent a patient’s best hope in cases of advanced cancer.

As of January 1999, federal law requires insurance plans that authorize mastectomies to also cover the costs of reconstructive surgery to achieve breast symmetry.

The current Congress is likely to pass the “Breast and Cervical Cancer Treatment Act” which was approved by the House in May and awaits a Senate vote after receiving the unanimous recommendation of the Finance Committee. The proposed law would provide coverage through state Medicaid programs for low-income women who are diagnosed with breast or cervical cancer through the Centers for Disease Control 50-state free screening program.

At the state level, the rights are more extensive. Some states mandate minimum hospital stays for mastectomy patients, state funding of breast cancer research and screening and mammography insurance coverage. In addition, Florida, Michigan and New York require physicians to inform patients about alternate methods of treatment, along with benefits and risks.

Eight states–Arizona, Georgia, Illinois, Louisiana, Maine, Maryland, Rhode Island and Virginia–have taken the lead in passing laws that require insurance companies to pay for treatment costs associated with participation in clinical trials.

But legislation at the federal level is essential, says Fran Visco, president of the National Breast Cancer Coalition in Washington, D.C.

“The issue of clinical trials is a consumer one,” says Visco. “Patients who have paid premiums deserve to have their routine patient care costs covered–whether in the clinical trial setting or not. If they don’t have this coverage, they are getting short changed on their rights.”

The situation was eased for senior citizens on June 7 when President Clinton signed an executive memorandum that reimburses costs for those on Medicare.

Ten states–Florida, Georgia, Kentucky, Massachusetts, Minnesota, Mississippi, Missouri, New Hampshire, New Jersey and Tennessee–require health plans to provide coverage for bone marrow transplants under certain conditions. These laws were enacted prior to findings over the past year that cast doubt on the efficacy of this mode of treatment and the revelations that a study in South Africa contained falsified data. In light of the mounting evidence, insurance industry leader Aetna indicated in March it would no longer cover these procedures.

A number of states have also established independent review boards that make it easier to challenge insurer’s decisions. The boards consist of outside medical experts and can yield decisions in as little as 24 hours for emergency cases and the insurer usually bears the cost.

While the picture is more encouraging than a decade ago, much depends on “what’s available under your policy,” says Schwerin. She advises women to be pro-active about their medical care with these tips:

  • View doctors and their assistants as a team, rather than adversaries. “Your doctor is your best ally,” says Schwerin. A doctor’s support is essential for documenting a claim that a treatment is medically necessary.

  • Ask the doctor to explain the different protocols that are available and the best treatment under individual circumstances.

  • Bear in mind that some HMOs discourage more extensive care through “capitation”–paying doctors a flat fee per patient, which means additional treatment goes uncompensated. Also, HMOs may have rules that hinder physicians from being candid about treatment options, so seek additional advice.

  • Read insurance policies carefully for benefits and exclusions. They will summarize coverage, define what treatments are considered medically necessary and state the grievance or appeal policy. Ordinarily, patients must go through an internal grievance procedure before appealing to an external review panel or contemplating legal action. In addition, your state insurance commission can provide information about patients’ rights to contest decisions.

  • Get to know insurance case managers. “Try to establish a relationship and have a phone number for needed authorizations. That can be very helpful in smoothing the way,” adds Schwerin.

  • Get everything in writing. If patients later contemplate legal action, having a paper trail is essential. So, ask for a written explanation if benefits are denied. Keep written notes of communications with the insurer or HMO, including the name of the person contacted, time, date and what was said. Send letters by certified mail, return receipt requested and keep a copy. And ask for confirmations of all faxes.

  • Take advantage of free legal resources. Free legal advice is available through a number of bar associations, patients’ groups and law school-affiliated legal clinics. For a partial listing, see the website of the American Bar Association’s Commission on Women in the Profession at http://www.abanet.org/women. The commission sponsors training sessions for volunteer attorneys and is also developing a clearinghouse of legal information for breast cancer patients, available on its website.

Stephanie G. Benson is a freelance writer based in Chicago.

Also see Women’s Enews, July 11, 2000: To Boost Monogamy, House Okays Warnings on Condoms: https://womensenewsp.wpengine.com/article.cfm?aid=194&context=archive