Ovarian cancer survivors share health care ideas for the Obama administration | St. Louis Public Radio

Ovarian cancer survivors share health care ideas for the Obama administration

Jan 6, 2009

This article first appeared in the St. Louis Beacon, Jan. 6, 2009 - "No woman should be lying in a hospital bed, suffering, wondering how she's going to pay for her health care," said Tricia Recker.

A 5-year ovarian cancer survivor, Recker spoke at a health care forum at the Center for Advanced Medicine at Barnes-Jewish Hospital on Dec. 30. She echoed the words of President-elect Barack Obama during the campaign, as he spoke of his own mother's battle with ovarian cancer.

To begin the process of health care reform, the Obama transition team called on Americans to hold public discussions of health care between Dec. 15 and Dec. 31. Members of St. Louis Ovarian Cancer Awareness (SLOCA) answered the call. Jan Paul, a two-year survivor and member of SLOCA, organized the group that took part in the national brainstorm.

On the Front Lines

The group of about 20 included ovarian cancer survivors, current patients, their caregivers, doctors and nurses. "The purpose of our gathering is to have an open exchange of ideas. This is an opportunity to get in the front line and help the new administration with new health care policy," said Dr. David Mutch, director of gynecologic oncology at Washington University School of Medicine, serving as the forum's moderator.

Before beginning, Mutch reminded the participants that the views expressed during the discussion, including his own, were those of the individuals. "We don't represent organizations of any kind," said Mutch. "We're just Americans."

Framed by personal experiences with ovarian cancer, the group's discussion was wide ranging. It included, among others,

  • the positives and negatives of a single-payer health care system,
  • the difficulty in getting affordable coverage when self-employed,
  • whether insurance covers clinical trials,
  • fear of genetic discrimination,
  • access to care in rural areas,
  • access to information and education about ovarian cancer,
  • early detection,
  • freedom to chose your doctor and
  • whether a system could offer incentives for living a healthy lifestyle.

Several of the women shared personal stories that illustrated the shortcomings of the current health care system. Recker, a self-employed small business owner, was rejected by many insurance companies because of her ovarian cancer diagnosis. "I was looking for affordable coverage with a [health savings account]. I want to be proactive in my investments and in my health and in my company," she said. "But I was turned down. One company said we'll talk to you when you're seven years out. Well, that's great. But what about now?"

Recker's situation illustrates the problems encountered by people who must seek coverage as individuals, such as those who are self-employed. Recker said she feels discriminated against because she is self-employed and because she has a pre-existing condition that is five years old.

"In this day and age, in the United States, it's not acceptable for someone to be uninsurable because they have been ill at one time," she said. Recker says she now has health insurance, but it covers nothing related to her cancer diagnosis.

Single-payer Health Care

One remedy suggested for this type of problem is a single-payer system. Forum participant Merrill Bauer, attending with his wife Sandy Bauer, a four-year survivor, asked to debate the pros and cons of universal health care, saying he felt it would be beneficial for individuals like Recker. She "would join the pool of everyone," he said, instead of seeking insurance herself.

No one at the forum came out specifically against single-payer health care; however, many pointed out potential problems in such a system. Some noted cases of long waits for care in countries with single-payer systems, such as Canada.

Dr. Leslie Massad, a gynecologic oncologist at Washington University, said there would likely be a greater focus on cost effectiveness.

"People will ask much tougher questions about what we are paying for and how we know it works," he said. This could lead to fewer tests or rounds of chemotherapy, for example. But Massad also pointed out that fears of a single-payer system limiting choice of doctors are largely unfounded. "Single-payer should preserve choice better than current systems," he said. "Many private insurers let you only sign up for certain doctors."

He also said some physicians may opt out of a single-payer system and have cash-only practices for those with the means to pay out of pocket.

Bridging the Gaps

In addition to discussing single-payer health care, the group observed that people do not want to take away from what works in the employer-based system, but to build a complementary system as a safety net. One common denominator in the discussion was a fear of gaps in insurance coverage. With a gap in coverage, many people with pre-existing conditions become uninsurable and, as a result, seek creative ways to bridge those gaps.

Sandy Bauer said she was able to keep her former library job's health care coverage for 18 months through COBRA, a federal law that makes it possible to continue medical coverage after separation from employment. But there was still going to be a six-month gap before she turned 65, she explained. During that time, she would be uninsurable. Because of the ovarian cancer diagnosis, however, she said she was able to be declared disabled by Social Security. "That allows me, or anyone, to stay on COBRA for up to 36 months," she said. In Bauer's case, that was enough to reach 65 and Medicare eligibility.

Of course, that won't work for everyone. And Dr. Matthew Powell, also a gynecologic oncologist at Washington University, said that he did not want a cancer diagnosis to be a disability when his patients are able. "We want our patients to do well. We want people who can work to be able to work," he said. But, he added that sometimes patients must make sacrifices, like being declared disabled, to survive.

The Business of Health Care

Powell showed optimism about a single-payer system, citing American ingenuity. "I think the demand of the public for quick access to care and the best technologies could still be met," he said. But the limiting factor is always cost. He pointed out the injustice of people being denied health care while the CEOs of health insurance companies make multi-million dollar salaries. "It's crazy that that [money] is taken out of the health system and is not providing benefit to patients," Powell said.

Powell also observed that health care cannot be a profit motivated business because the incentive is in the wrong place. "When you're ordering tests, and that's how you get paid, you order more tests," he said.

Along those lines, Leanne Scott, an oncology nurse, said she would like to see health care decision-making separated from business interests. "I'd like the government to give health care back to the physician," she said.

A Good Sign

In closing, Mutch told the group that a summary of the discussion would be submitted to the Obama transition team. How the new administration will use the ideas remains to be seen.

As demonstrated by the forum itself, health care is a complex subject and reforming the health care system is a tremendous undertaking. But then, so is surviving ovarian cancer. "Since you're here," said Mutch told the attendees (pictured below), "you probably don't sense futility. That's a good sign."

Julia Evangelou Strait is a freelance science writer based in St. Louis. She has a master's degree in biomedical engineering and works in hospital epidemiology for BJC HealthCare.