Anita Kellman, left, co-founder of the Breast Cancer Boot Camp, gets a hug from cancer survivor Arlene Kutoroff in front of the "Fight Back Express." The American Cancer Society bus stopped in Tucson Friday on a nationwide tour to collect stories from people affected by the disease to present to lawmakers.

A.E. Araiza / Arizona Daily Star

Related articles:

Bus carrying messages about cancer to stop here U.S. government must do more to fight cancer

Other articles by Stephanie Innes:

Medicare enrollment aggravates, baffles aged Doctor: Potential egg donors face risks A warm, safe place for preemies Longtime S. Tucson non-profit stays shut Health-care control at issue in Prop. 101In women, heart-attack signs often misleading Good deed, bad luck State board stands firm; Tucson doc to lose license A super devotion to caring Sherlockian effort to find origin of AIDS took 8 years

Health Care
Carondelet Foothills Surgery
Pre-Op Nurse General
Prestige Maintenance USA
Area Manager Dental
Apache Dental
Porcelain Techs Health Care
SOUTHERN ARIZONA ENDODONTICS I
NSURANCE PROCESSOR Technical
Yavapai College
Analyst Banner Programmer Education
Yavapai College
Teachers Retail
TOTAL WINE & MORE
WINE TEAM MEMBERS, CASHIER & STOCK MEMEBERS

Jeanie Burch's diagnosis of lung cancer this summer came with an added stressor: Though she has medical insurance, she found out it wouldn't cover all her treatment costs.

Her out-of-pocket expenses were calculated at nearly $1,400 per month for three months, and that doesn't include money for shots and prescription drugs, which also come with pricey co-pays and patient contributions, she said.

"Basically, our health-care system sucks," Burch said Friday after climbing up a ladder to write her name and the date on the "Fight Back Express."

The American Cancer Society bus is collecting stories from people who have been affected by a disease that's expected to kill 550,000 Americans this year.

"My insurance costs me $400 a month as it is," said Burch, a 59-year-old retired aluminum worker, who is in the midst of chemotherapy treatment in Tucson. "When I got cancer, I was worried about my retirement savings."

Burch is not alone. Similar stories were told over and over again Friday morning at the Cancer Society's Cancer Action Network "Fight Back Express" event. The gathering, which attracted about 120 people, was in a parking lot in front of the Arizona Cancer Center at UMC North, 3838 N. Campbell Ave.

Organizers collected "Picture a Cure" testimonies and photos from local residents whose lives have been affected by cancer.

They plan to give the stories to federal and state legislators with an aim of improving the health-care system and government attention to cancer.

Arlene Kutoroff considers herself lucky. She's survived breast cancer and a double mastectomy. The retired high school counselor, who is 59, also had health insurance when she was diagnosed two years ago.

Still, she's had to invest a lot of her own money in treatment. Last year, she spent $8,500 on health care bills.

"I had decent insurance, so I'm fortunate, I felt blessed," Kutoroff said. "No one has good insurance. Congress maybe. They are the only ones."

Though she was working three jobs at the time, Tucsonan Bettina Woner had no health insurance in 2006 when she suspected something was wrong — she'd been having discharge from her breast and noticed a lump. But it took her months to seek help, as she didn't know where to go.

"I made too much money to get help from AHCCCS (Arizona Health Care Cost Containment System, the state's version of Medicaid). Our finances were stretched to the max, and I was frozen with fear," said Woner, who is now 48 and in remission. "Also, breast cancer doesn't run in my family. Cancer doesn't run in my family."

She finally found help through Pima County's Well Woman HealthCheck program. She ended up getting a double mastectomy and went through aggressive treatment with the drug Herceptin.

One-third of Americans will have cancer at some time during their lives, said Dr. Richard Carmona, the former U.S. surgeon general and now president of the Canyon Ranch Institute.

The sad fact is that so much of cancer is preventable, he said. Obesity, smoking and lack of exercise directly contribute to the cancer burden, he said.

And millions of Americans are either uninsured or underinsured, making them less likely to be diagnosed with cancer in its early stages when it's more treatable, Carmona said.

The latest figures from the U.S. Census Bureau show nearly 46 million Americans — about 15 percent of the population — did not have health insurance in 2007.

The cost is high: Cancer costs Americans $400 billion every year in treatment and in lost work — more than any other disease.

"Our system is so complex and convoluted that I get lost in it, and I was the U.S. surgeon general," Carmona told Friday's gathering. "Folks, we don't have a health-care system, we have a disease-care system."

Lisa Reynolds had thyroid cancer when she was 8. She came to Friday's event with her 22-month-old son and her mother and expressed fear for her family.

"I worry about access to care," said Reynolds, who is 35. "I have insurance, but it's not the greatest."

Reynolds has been an active volunteer for the past six years with the American Cancer Society's Cancer Action Network because she so strongly believes in advocating for early detection.

When she was a child and had a lump on her neck, a doctor told her mother that it would probably go away. After they sought a second opinion, Reynolds ended up in surgery and on a treatment plan of radioactive iodine. A year and a half later, the cancer spread to her lungs and lymph nodes. She's now in remission.

"If my mother had listened to my doctor, I would not be here today," she said. "Not everybody is as blessed as I am today. The government has such an opportunity to do something about that, and I am going to be among the voices to make sure they know that."

The Fight Back Express bus is scheduled to continue visiting cities across the country through Election Day, Nov. 4.

Officials with the network note that scientific discovery alone will not defeat cancer. The federal government is by far the largest source of cancer research funding, but supporters of the Fight Back Express say years of budget freezes and cuts are impeding progress.

Jeanie Burch said she was able to find help through her oncologist's office, which has a financial aid program. She wonders where she would be if she'd had to face the bills on her own.

"You use all this physical and emotional strength to fight the illness. To worry about money makes it that much harder," Burch said. "I don't know what people do who don't have insurance and don't find help. I guess a lot of them die."