(WOMENSENEWS)--Alva Williams thought losing her right breast would be the worst part of her battle with cancer.
Then came the nightmare of recovering from surgery without medical help.
Like a growing number of health insurance companies, Williams' provider would not pay for an overnight hospital stay following mastectomy, the surgical removal of one or both breasts to prevent the spread of breast cancer. Because Williams could not afford the $1,000-a-night cost of hospital care, this Jacksonville, N.C., retiree had her spouse change her bandages and empty the drainage tubes that removed lymph, blood and fluid from her wounds.
"My husband did his best but he's not a trained professional, and I wound up getting a bacterial infection so serious it could have killed me," says Williams, who had a mastectomy in 2006 at age 62. "Recovering from that caused a six-week delay in getting the chemotherapy I needed."
Outraged at her treatment, Williams has joined 21 million other Americans who are rallying for extended care for breast cancer surgery patients. That's the number of people who have signed a petition objecting to what they call "drive-through" mastectomies.
The petition calls on Congress to stop insurers from making breast cancer surgery patients leave the hospital when their doctors say they need to stay longer by passing the Breast Cancer Patient Protection Act.
Breastcancer.org has joined the Chicago-based Y-Me National Breast Cancer Organization, the Atlanta-based American Cancer Society and other health groups to support the bipartisan bill, which would require insurers to cover a minimum 48-hour stay following a mastectomy or lumpectomy and a minimum 24-hour stay following lymph node dissection in cases where doctors deem it necessary.
The bill has 18 co-sponsors in the 100-member Senate and 217 co-sponsors in the 428-member House.
DeLauro Looks for a Vote
"Breast cancer patients shouldn't have to fight for recovery time when they're already reeling from a physical and emotional trauma," says Rep. Rosa DeLauro, D-Conn., who has spearheaded the bill. "With support for this measure growing, we hope to have it up for a vote within the next several months."
Rep. Jerry Moran, R-Kan., and Sens. Olympia J. Snowe, R-Maine, and Mary Landrieu, D-La., are also leading the push for the Breast Cancer Patient Protection Act.
Of the three leading presidential candidates--Sens. John McCain, Barack Obama and Hillary Clinton--Clinton is the bill's only co-sponsor.
Circulated since 1997 by New York-based Lifetime Television Network on myLifetime.com, the petition has attracted signatures from all 50 states.
For a short time, the petition and bill were labeled hoaxes on the Web site Snopes.com. Since that mistake was corrected in 2003, the petition has garnered more than 5 million signatures annually.
These days, some supporters say election-year politics may be stimulating particularly strong grassroots support.
Breast cancer is a crucial issue for women (ranking a 9 in importance on a scale of 1 to 10) as they decide for whom to cast their votes, according to a recent Lifetime-Zogby poll.
Keeping Up the Push
In 2006, Lifetime representatives joined forces with the pop singer Jewel and trooped to Washington, D.C., to hold a press conference and present the petition to Congress.
In January 2008, they made the trek again, this time accompanied by actress Marcia Cross of "Desperate Housewives."
One in 8 women will eventually develop breast cancer, and more than 182,000 will be diagnosed with the disease this year, reports the National Cancer Institute in Bethesda, Md.
DeLauro introduced the first version of the bill in 1996, after a surgeon in her Connecticut district told her she'd had trouble getting insurers to cover post-mastectomy care.
DeLauro encouraged the Connecticut Office of Health Care Access to research the issue, and it found that from 1991 to 1996, the length of the average post-mastectomy hospital stay in Connecticut plummeted by 43 percent.
"That trend is now spreading nationwide," says Dr. Pat Whitworth, chair of the research committee for the American Society of Breast Surgeons, based in Columbia, Md.
Whitworth says that because outpatient care is improving and because insurers refuse to cover longer hospitalization, 65 percent of the 125,000 women who have mastectomies in the United States each year are going home within 24 hours.
"Most patients can do this safely, especially if their health care providers teach them how to take care of themselves after the procedure," said Whitworth. "But just because the majority can safely go home, that doesn't mean insurance companies should require them to do so. A patient's pain may not be under control, she may not be steady enough to walk, and she may not be ready for self care."
Risks of Rushing
Dr. Marisa Weiss, president and co-founder of Breastcancer.org, based in Ardmore, Pa., says a mastectomy patient who is rushed out of the hospital too soon could be at higher risk for infection. "If she has heart disease or diabetes and doesn't have professionals caring for her," she adds, "her blood pressure or blood sugar levels could spike unchecked."
Susan Pisano, vice president of communications for America's Health Insurance Plans, a Washington-based trade group representing 1,300 health insurance providers, says the group takes no position on the Breast Cancer Patient Protection Act but that it has opposed similar mandates because it believes clinical standards of practicing medicine should not be put into law. Pisano also says recent progress in medical care means the length of stay for mastectomy care has justifiably declined in line with most surgeries.
"Studies done at Johns Hopkins and other leading institutions have found very good outcomes with outpatient mastectomy," says Pisano. "And a government study in Massachusetts found no evidence to suggest women are being denied inpatient care."
Meanwhile myLifetime.com is collecting expressions of support.
"My sister had a double mastectomy and was sent home with drainage tubes dangling from her body," an Alabama activist says in one e-mail posting. "Her driver had to stop twice on the way home for her to throw up from the effects of riding in the car so soon after the anesthesia."
A Wisconsin woman complains, "I was wheeled into surgery at 9:30 a.m., and by 3:30 p.m. I was walking down the hall of a motel across the street from the hospital. I had to hang on to the wall to keep myself from falling."
Toby Graff, Lifetime's vice president of public affairs, says the network has received thousands of similar e-mails since adding the petition in 1997 to its campaign against breast cancer.
Molly M. Ginty is a freelance writer based in New York City.
For more information:
MyLifetime.com, Breast Cancer Petition:
Rep. Rosa L. DeLauro, Breast Cancer Patient Protection Act:
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