For families affected by cancer, the phone number is easy to remember: 1-800-ACS-2345. The letters stand for the American Cancer Society, and dialing the number takes you to the ACS's National Cancer Information Center in Austin, Texas. The call center fields about a million calls a year, offering answers questions both simple and complex, from "Where can I get help with transportation when I can't drive to chemo appointments?" to "How do I find insurance if my illness forces me to quit my job?"
Half the calls coming into the center deal with paying for treatment, either because lifetime limits on policies are quickly reached cancer is one of the five most costly medical conditions in the U.S., according to the ACS or because the patient is struggling to maintain coverage in the face of rising premiums and accumulating co-pay costs. Some, having been forced by illness to stop working, must struggle to keep their employer-sponsored coverage through COBRA rules. Others are looking for access to sometimes pricey state-funded high-risk pools, and 72% of the callers are simply uninsured. So intense and complex is the insurance issue that in 2004 the ACS launched the Health Insurance Assistance Service (HIAS) within the call-center operations. Made up of a small group of specialists, the HIAS fields questions about insurance, both private and state, and helps patients navigate the system. (See stories of cancer survivors.)
Amy Wilhite found the call center after a friend suggested she call the Cancer Society as her family's crisis worsened. In March 2007, her daughter Taylor, now 10, received a diagnosis of acute myeloid leukemia, a fast-growing cancer that not only took a toll on Taylor's body but also quickly consumed the $1 million lifetime health-care benefit the girl had under her father's employer-based coverage. After three chemotherapy treatments, her cancer went into remission, but she suffered multiple side effects, including heart and hip complications, that may dog her for years to come. After state and insurance-company bureaucracies were less than helpful, the ACS and its call center proved to be a valued ally. "They were much more compassionate," Wilhite says. "They just had much more information about where I could turn next."
For Wilhite, the service the specialists offered was empowering the counselors are not advocates, says HIAS supervisor Anna McCourt, but they show patients and families how to open doors to solutions, decoding insurance jargon and suggesting strategies for appeals after a denial of coverage. Wilhite got advice on how to approach the family's insurer about increasing lifetime benefits to $1.5 million, a successful strategy that saw benefits raised for all employees at the automotive company where Taylor's father works.
McCourt says most people have difficulty understanding the language in insurance policies. Even human-resources personnel may not fully understand all the intricacies of a policy when briefing a new employee. Also, coverage that appears adequate at first glance may fall short eight annual doctor visits or three radiation courses may initially seem sufficient, but a breast-cancer patient can require many more visits and multiple radiation courses in just a few weeks of treatment.
Originally, the service offered a road map to coverage in four states the in-house counselors have to amass a wide-ranging knowledge of the vast mosaic of policies, both public and private, because each state regulates its own health-insurance industry. Now, however, HIAS has nine specialists and has steadily expanded to include 36 states and the District of Columbia. The job of fielding calls is a stressful one, says McCourt, but the specialists "are very passionate about helping people understand what is available and making sure they are empowered." The HIAS specialists gain insight into which states offer affordable solutions and which states are not a good place to suffer through a major illness. Generally, states in the southeastern United States are the most challenging.
The level of detail necessary to navigate the system is astounding. For example, each state receives funding under the auspices of the Centers for Disease Control for breast- and cervical-cancer screening, but unless the patient knows exactly which clinic is utilizing those federal funds on a specific day and time, the screening may not be covered by the CDC funds, McCourt says. Specialists can guide patients through that bureaucratic maze and brief them on the right questions to ask and even the right language to use when making an appointment to ensure the screening is covered.
Of the 21,000 people whose cases were undertaken by the center's specialists, 17% saw their problems solved, while an additional 57% got some help that might not be totally affordable or adequate. For example, the Wilhites worry that Taylor's $1.5 million cap may be reached before she is 18, at which time the family will face another hurdle: getting her coverage as an adult.
For some 26%, however, there is no help. David Young, 58, a trucker from North Carolina, is one of them. Since a 2007 diagnosis of stage IV kidney cancer, a rare disease, Young is struggling to maintain his employer-based insurance through a COBRA program his premiums are now $1,332 a month, which consumes most of his Social Security disability benefits of about $1,500 a month, benefits that are too high to qualify for Medicaid. "I will be honest with you," Young says. "I've got a lot of friends who are so good to my family it's the only way we have made it."
As Young's COBRA premiums have risen, he has cashed in savings accounts and a 401(k) to meet costs and co-pays. The cancer has spread to his lung, hip and leg bones, and the costs of his chemotherapy and pain medications are mounting. His hospital has helped cover some expenses. Born on the Fourth of July, Young has outlived his initial prognosis; now he is hoping to persuade the Social Security Administration to grant him Medicare benefits in April, the second anniversary of his disability (recipients must wait two years to be eligible). But he has since found out he will not be eligible for Medicare until October: the two-year anniversary of receiving his first SSI check.
Young's story is just one of 20 featured in an ACS report that details the diverse experiences of some of the callers to the center, calls that have doubled in number since last summer as the economy has slumped, according to McCourt. "It became clear to the board of the American Cancer Society that unless we got people insured, we were not going to be able to reduce [cancer] incidence and mortality in this nation," says Christy Schmidt, senior policy director of the ACS. "If you can fix the system for cancer patients, we believe you can fix it for everybody."