Thousands call the American Cancer Society every day looking for answers and encouragement. Increasingly, the Society is hearing from people across the nation whose needs go beyond cancer information, a caring support group or transportation to their next cancer treatment. Instead, they share how a lack of health insurance kept them from getting early detection screening. Now facing an advanced cancer diagnosis, they may be denied treatment. Others share the shock of realizing that the insurance they depended on is inadequate to cover their medical bills. They may personally survive cancer, but their finances will not.

Betty Lynam and Raina Bass have lived these stories. They both contacted the Society, looking for resources to help their families get through a crisis caused by lack of access to quality health care. While the Society has consistently worked to improve access to health care through patient programs, education and advocacy, those initiatives are not enough.

Stories like those of Betty and Raina have moved the Society to make improving access to health care a key priority. Until change occurs, the Society will share their stories and others, highlighting the challenges faced by the more than 1.4 million Americans diagnosed with cancer each year.

"I was helpless."

Betty Lynam, 67, believes that if health insurance was more affordable, her son Lonnie might have seen a doctor about his blinding headaches.

"Maybe he would have gotten a physical," she says. "If he had just had a chest X-ray, maybe [the cancer] would have never gotten to the brain." And she believes her son would have received better care in his final days. Lonnie died in March 2007 at age 45.

A nurse for 40 years and now retired, Betty says she isn't surprised by differences in care based on insurance. "I have seen the difference in the care [patients] receive when they don’t have insurance," she says. "I saw that in the kind of care that Lonnie didn’t get."

Unable to see her son in need, she temporarily moved from her home in Creston, Iowa, and into Lonnie's hospital room in Texas to do what she could.

A married father of a 3-year-old, Lonnie was a self-employed carpenter living in Pipe Creek, Texas. Although he carried health insurance for his employees, he was uninsured. He was starting his business and couldn't afford the extra expense. Betty says her son also reasoned that he was in fairly good health.

"He had never been sick, and he didn't even have a family doctor," says Betty. "Everybody assumed that because he had migraines in his family, that's what it was."

But one day in September 2005, Lonnie's headaches became so severe that he couldn't stand up. His brother Kelly rushed him from the job site to the emergency room. Doctors discovered that Lonnie’s migraines were caused by four brain tumors, cancer that had originated in his lungs and spread.

Lonnie went into surgery, and Betty remembers the doctors saying that they did their best but couldn't remove all of the cancer. Lonnie would need chemotherapy and radiation. Then Betty says she was asked if she could help pay Lonnie’s hospital bill.

"I could not, because I am retired and I am on Social Security," says Betty. "I have a 17-year-old daughter, a senior in high school. And I was helpless. You have one kid who needs you and another one that you are supporting and taking care of."

Lonnie was now too sick to work and had no way to pay for his treatment. His brother Kelly agreed to help. When he could take time off work, Kelly also drove Lonnie to the doctor's office—40 miles each way. But that meant Lonnie often missed appointments.

Four months after his diagnosis, in January 2006, Lonnie qualified to have his therapy paid through Medicaid. However, the benefits ran out after six months, preventing Lonnie from getting follow-up care to determine if his treatment was working.

That's when Betty called the Society and spoke to someone with the Health Insurance Assistance Service (see sidebar, "Where to Turn"), which provides guidance for patients struggling with insurance issues. After carefully reviewing Lonnie's situation and the available resources, Betty was disappointed to discover there was little anyone could do.

As the cancer took its toll on Lonnie's body, Betty says she saw him suffer intense pain and confusion. Like any mother, she wondered if somehow this could have been prevented. She says the answer is to make health insurance available to everyone, regardless of income—and make certain, above all, that everyone has access to cancer screening tests.

"There ought to be some kind of insurance out there, and if people can’t afford it, it ought to be free," says Betty. "I know that there are some people out there who can’t afford it."

"There was nothing I could do."

When Raina Bass of Boonville, Missouri, was diagnosed at age 15 with ovarian cancer, she didn’t understand how her parents struggled to pay her medical bills. Her father was self-employed and didn’t have health insurance. Raina survived the cancer but now—12 years later—her parents are still paying off that debt.

Then two years ago, Raina was diagnosed with thyroid cancer. As a wife and a mother of a 3-year-old working to finish her college degree, she learned firsthand about the financial hardships that cancer can bring.

Unlike her father, Raina had insurance, but it still wasn’t enough. “I had two insurances, insurance from my employment and from my husband’s employment,” says Raina. “I started receiving some bills and come to find out that even with two policies, we still had to pay thousands out of pocket.”

Raina says her own financial crisis was caused by high insurance deductibles and low-benefit thresholds, forcing her and her husband Jody to pay a substantial portion of her cancer treatment. But they couldn’t always pay on time, triggering calls from collection agencies.

“There was nothing I could do,” says Raina. “I had a lady tell me that she couldn’t understand how I was going to school, how I could go to college. I would just get off the phone and cry.”

Raina persevered, keeping up with her treatments, her job, her home and college. She says that while the bills haven’t entirely ruined her family financially, they are living paycheck to paycheck.

At one point, Raina thought she had an answer: She would quit her job with the state to run an in-home day care center. Raina says she figured she could buy her own insurance policy, one with better benefits. But because of her health history, no company would insure Raina.

“They would say, ‘let me see what I can do,’ and then they wouldn’t call me back,” she says. “Some would say, ‘I can’t help you,’ and hang up. That made me feel like an outcast.”

That’s when Raina called the Society and told them about her situation. Through the Health Insurance Assistance Service, Raina learned more about her insurance options and which ones would work best for her situation.

Later, when the Society began planning its new campaign to raise awareness about access to health care, organizers came across Raina’s story. They felt her experience would help others better understand what it’s like to face cancer without adequate health insurance. The Society asked Raina if she would be willing to tell her story through national television commercials and videos posted on the Society’s Web site, www.cancer.org/access.

Raina agreed and, in response to her appearance in the ads, has heard the stories of other cancer survivors like herself. “I have had the most wonderful experience doing this,” says Raina. “I feel like the people who have written me now feel like they are not alone.”

That’s the reason she chose to tell her story publicly. “I don’t know that this is an issue that has been brought up a lot,” she says.

And Raina’s advice for others? Find out, right now, what your insurance is, what it will pay for and what it won’t. Ask questions, know your rights and know where to turn for help.

“This whole thing gets me so frustrated,” says Raina, who is once again cancer-free but still in debt. “I have seen both sides, being underinsured and not being insured at all, and you can’t win either way.”

Learn more about why the American Cancer Society considers access to health care essential in the fight against cancer. Call 1-800-ACS-2345 or visit www.cancer.org/access.