SEMINOLE — Here's what Alisa Savoretti thinks of Breast Cancer Awareness Month: She wishes it would go away.
Not because she's in denial. The Seminole woman is a breast cancer survivor and her mother also had the disease.
What she really wants for pink-ribbon month is a new direction.
"What we need is action," said Savoretti, 49. "We are all aware. I think it's time for action now."
Yes, she wants better methods of prevention and screening, and more certain cures.
But her personal crusade is helping women who can't afford to have breast reconstruction after a mastectomy. That was Savoretti's situation back in 2001 when she found a lump.
Lacking health insurance, she relied on Pinellas County Health and Human Services to cover her mastectomy and chemotherapy. But the program didn't pay for breast reconstruction.
Two years later she returned to Nevada and her former profession as a Las Vegas show girl — minus one breast. She billed herself as the lopsided show girl and shared her story with local media.
"Humor helped. I could make fun of myself which helped me get the attention of the media when I started trying to help women get reconstruction," she explained.
Savoretti had a prosthesis, but found it hot and heavy. She chose instead to have her costume tops padded until she had reconstruction in 2005, paid for by her employer-provided health insurance.
Her next step was to start a nonprofit she called My Hope Chest to help other women.
"A lot of charities raise funds for research and education and getting people to talk about breast cancer. We need to help women get reconstruction," said Savoretti.
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A 2006 study published in the Journal of the American Medical Association found that only a fifth of women who have mastectomies follow through with reconstruction.
Not all of them lack the ability to pay. Breast cancer is most prevalent in women over 65, and the Medicare program for seniors does pay for reconstruction. Private insurers also are required to provide at least some coverage for it.
Women opt out for a variety of reasons. Some simply don't want to go through any more surgery. Others don't like the idea of artificial implants, and can't afford or aren't physically suited for reconstruction using their own body fat.
But others want reconstruction and are uninsured or have high-deductible insurance plans and can't afford the thousands of dollars in out-of-pocket expenses.
Savoretti says she started My Hope Chest to help those women. "We exist to restore, transform and complete a woman's breast cancer journey. The women who come to us want this surgery desperately," she said.
She works with physicians and medical facilities that either donate or discount their rates for My Hope Chest clients. Donations pay for any costs not donated, which can run as high as $12,000 per client.
Since starting My Hope Chest nine years ago, the group has gotten 10 women free breast reconstruction surgery in Florida, Las Vegas and New Orleans.
There are a handful of other nonprofits that provide similar support for breast reconstruction, but most work with local women. One exception is the United Breast Cancer Foundation, based in Huntington, N.Y. It negotiates with doctors and medical facilities on behalf of patients, to get free or reduced cost services in a woman's home town. The organization originally paid the full cost, but in order to help more women, it now pays about half the cost of reconstruction, said executive director Stephanie Mastroianni.
"We are able to help one to two women a month, which costs us anywhere from $3,000 to $9,000 for each case, depending on what arrangements we are able to make,'' as well as whether a woman needs one or both breasts reconstructed, and where she lives, as medical costs vary widely. "We also ask for the doctor or the facility to allow us to make payments in installments," she said.
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The need for reconstruction surgery is far greater than the resources of My Hope Chest and other nonprofits.
"Almost 200 women are on our waiting list right now," said Savoretti.
Laurie Gilsdorf of Hudson was on that waiting list until this year.
In 2004, her right breast was removed because of an aggressive tumor. Then, after learning she has a strong family history of the disease, the surgeon suggested a prophylactic mastectomy the following year.
But she was canceled by her health insurance company right before having reconstruction. She got insurance back when she started a new part-time job, but that plan would only pay $2,000 for breast reconstruction, which in some cases can cost more than $20,000. Even with a second part time job, Gilsdorf couldn't afford it.
Last year, a friend told her about My Hope Chest. She applied immediately. It took several months to get a response and then to fill out all the necessary paperwork and gather the documentation to prove her financial hardship.
"I can't remember a lot of things, but I'll never forget the day I found out I would have reconstruction. It was April 25. It was very, very exciting," said Gilsdorf, 58.
"How they are able to do this is amazing. To know I'll go from having a bunch of scars to having shape again is amazing."
Gilsdorf started the reconstruction process in August when St. Petersburg cosmetic surgeon Antonio Gayoso placed tissue expanders in her chest to make room for implants. She drives an hour and a half to his office every week to have saline pumped into the expanders so her skin gradually stretches in preparation for her final surgery.
"This is the biggest gift in the world to me," said Gilsdorf. "I had given up. I thought, I am going to be stuck like this for the rest of my life."
Gayoso, who is chief of plastic surgery at Bayfront Medical Center and St. Anthony's Hospital in St. Petersburg, has provided breast reconstruction for two My Hope Chest clients, including Gilsdorf.
"I'm not good at fundraising, so the best thing I can do to support this cause is to do the surgery," said Gayoso, "But my contribution is probably the smallest part of the entire cost. You still have to pay for the implants, the anesthesiologist, the operating room, the support staff, it takes a whole team. My Hope Chest takes care of all the other expenses."
In these days of high-deductible insurance plans and under-insurance, he said it's not unusual to see patients who can't afford reconstruction.
"They end up having to cover a huge chunk of the charges and that's a big change from the past," said Gayoso, who has been in practice for 14 years. "That definitely affects whether some patients can have surgery because the deductible can be huge."
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Savoretti moved back to the bay area in 2009 and has made running My Hope Chest her full-time job. She lives with her mom, Betty, who she says is due half the credit for keeping the group going.
My Hope Chest receives more than six new applications each week. She wishes she could help more women, but funds to pay for the care and staff to vet the applicants are limited.
A core group of about 10 volunteers help Savoretti and her mom. A public relations agency, printer and graphic designer donate services. The group has a fundraiser on Oct. 27 at the newly renovated Floridan Palace in downtown Tampa.
"I'm so grateful for the generosity of so many people. But, we've gone as far as we can without a dedicated staff and headquarters," said Savoretti.