Financial Aid

Theresa D’Andrea of Limerick, Maine, didn’t set out to become an icon of health care reform. She just wanted her husband healthy.In the fall of 2008, doctors discovered Rocky D’Andrea, then 61, had metastatic melanoma, which had already set up three malignant outposts around the base of his spine. The doctors offered one hope: treatment with the immunotherapy drug interleukin-2. To get it, he would have to travel to Beth Israel Deaconess Medical Center in Boston.

They knew the therapy would be expensive. The drug alone cost them $9,000 a dose, and Rocky was getting four of them a day—or $36,000. But he had health insurance through his employer, so price did not weigh on Theresa’s mind. “All I was thinking about was what it was going to take to get him up on his feet,” she says.

Until the day the hospital social worker came around to Rocky’s room and suggested Theresa meet with the financial aid officer. The couple’s insurance policy had a lifetime benefit cap of $250,000, a ceiling he had long since shattered. Over the coming year, his charges topped $1.6 million. The couple spent their retirement to cover the bills. They drained their life savings. When they had nothing left, Theresa began charging prescriptions and living expenses on credit cards. Despite all the treatment, Rocky died this year at the end of March. After negotiating with hospitals and pharmaceutical companies, Theresa is still whittling down a balance of $60,000. “Right now I’m making 14 payments a month to different agencies connected with the medical field,” she says. 

Theresa’s narrative plays out in millions of homes across the country. According to a 2005 study by researchers at Harvard University and Ohio University, about half of all bankruptcy filings arise from insurmountable medical bills. But that number may change as the Patient Protection and Affordable Health Care Act gets phased in. President Barack Obama even singled out Theresa in a speech at the Portland Expo in April: “Because of this reform, a situation like Theresa’s won’t happen again in the United States of America,” Obama told the crowd. “And that’s going to start this year.”

Love it or hate it, health care reform became reality March 23, when President Obama signed the most extensive overhaul of the U.S. health care system since the creation of Medicare and Medicaid in the 1960s. Provisions of the 906-page bill will go into effect through 2014 [see timeline], when the most substantial changes will occur. According to the Congressional Budget Office, the new law will take between 35 million and 37 million people out of the ranks of the uninsured, meaning that 94 percent of all Americans will have health insurance.

Health care reform stands to affect almost all people with cancer, both those who lack insurance and those who already have it. Some will be affected profoundly, as they will be spared from financial ruin because of their treatment. The bill also addresses cancer screenings, out-of-pocket expenses, clinical trials, the Medicare “doughnut hole,” and even creates new taxes on cancer-unfriendly industries—such as tanning salons—to help pay for it. Opinions vary on reform, from those who think it goes too far, to those who think it didn’t go far enough. But patient advocates say the changes will generally be good news for anyone with cancer. “By no means do I think the health care reform bill is perfect, but there are many positives,” says Jonathan Simons, MD, CEO and president of the Prostate Cancer Foundation. “For cancer patients, it’s better than what we had before. But I don’t think the work is over.”

Here is a rundown of changes that will affect cancer patients:

The single change cited most often as a benefit for cancer patients is the elimination of pre-existing conditions from policies. That has already begun for children, and it will be required across the board by 2014. When fully implemented, people with cancer will no longer be denied coverage because of their diagnosis—which sometimes occurs now even after their cancer is cured, says Nancy Davenport-Ennis, president and CEO of the National Patient Advocate Foundation. Neither will they fear moving to a different job and losing their insurance. In 2006, the Kaiser Family Foundation, a non-partisan health policy research organization, released a study reporting that about 11 percent of people who once had cancer couldn’t buy health insurance because of their medical history. Companies also will be limited in their ability to charge higher premiums on the basis of a person’s medical history.

Until broader insurance protections go into effect, people with pre-existing conditions, such as cancer, who have been uninsured for at least six months will be able to get insurance coverage through temporary “high-risk pools.” These pools will offer choices to those whom insurance companies deem too risky to cover, largely because of their medical history—but not at typical high-risk premiums. Starting in 2014, these pools will be replaced by a permanent insurance marketplace, offering coverage for everyone, but particularly appealing to those without an employer-sponsored plan who may qualify for subsidies.

“I think the biggest change for cancer patients are the provisions that will allow them to buy their own coverage even if they get sick,” says Karyn Schwartz, MPH, a senior policy analyst at Kaiser. “A lot of cancer patients are unable to work because of their treatment. When they lose their employer-sponsored coverage, then they’re stuck. Now they would be able to go into an exchange and purchase insurance. When they recover, they are not saddled with all that debt.”

For more details on how specific groups may be affected by health care reform, see the National Patient Advocate Foundation website at www.npaf.org/npaf-election-center.html.

The end of pre-existing condition clauses could also profoundly affect children with cancer and their families. Until now, survivors of pediatric cancers often have been haunted by their medical past: a 2005 study in the Journal of Clinical Oncology reported that close to one-third of adult survivors of childhood cancer reported problems getting insurance, compared with 3 percent of their siblings.

Also, young adults will be able to remain on their parents’ policies until age 26, says Lori Salley, director of the Children’s Cause for Cancer Advocacy.

“If you’re under your parents’ plan and can retain that coverage, that’s a great option,” she says.

Often, when basic researchers discover potential paths to cure disease—an important gene, for example, or a molecule that arrests cancer growth—the findings are never explored further. For many reasons, companies are often loathe to take the financial risk, leaving promising new treatments to die from neglect. The new law authorizes a program called the “Cures Acceleration Network” at the National Institutes of Health to “conduct and support revolutionary advances in basic research, translating scientific discoveries from bench to bedside.” Salley says new treatments have been particularly difficult to come by for children’s cancers because the market is so small. The law also provides a new tax credit for therapeutic discoveries. “It’s encouraging for us that there is new thinking in how to fund research development,” she says.

Under current Medicare prescription drug coverage rules, a complicated formula determines what seniors pay for their drugs. After meeting a $310 deductible, patients pay 25 percent of the costs of their prescriptions, until the cost of their drugs totals $2,830. Patients then pay 100 percent of their drug costs, until the bill totals $6,440. The $3,610 difference between the two is the much-despised “doughnut hole” and has riled seniors since the benefit was added.

“With more and more cancer drugs becoming oral, closing the doughnut hole is huge,” says Allen Lichter, MD, CEO of the American Society of Clinical Oncology (ASCO). The coverage gap won’t be fully closed until 2020, but this year, seniors who have already reached it will get a one-time, tax-free rebate check of $250. Next year, seniors in the doughnut hole will get a 50 percent discount on brand-name drugs.

Beyond basic insurance reforms, the new law also tries to make it easier for patients who want to receive care through clinical trials, which not only offer cutting-edge treatment but also are necessary to advance the field of cancer treatment. “We’re way behind where we need to be on cancer patient clinical trials,” says Simons of the Prostate Cancer Foundation. Currently, drug companies usually supply the drug and basic tests, but they often don’t pay for drugs to relieve even common side effects. Insurance companies don’t necessarily either, though the rules can vary from state to state. Starting in 2014, however, insurers must cover the cost of care associated with trials.

Health care reform may also make it easier for people to get preventive care without any kind of copay or deductible requirement. Some, like mammography and colorectal cancer screenings, are mentioned specifically in the law as services that health plans should “provide coverage for and shall not impose any cost sharing requirements for.” And that measure is not waiting until 2014. It will be mandated in new policies starting this year.

While applauding the inclusion of preventive care, some health care advocates were disappointed to see that health care reform did not address the obesity epidemic, one of the nation’s foremost health problems and a major contributor to cancer. The most recent statistics show that 68 percent of Americans are overweight, with almost 34 percent considered obese. In addition, studies have found links between obesity and cancer incidence and survival. (The American Institute for Cancer Research estimates that excess body fat causes about 103,600 cases of cancer each year). “It’s unfortunate that the bill doesn’t incentivize healthy behaviors,” says Simons. He doesn’t advocate penalizing unhealthy habits, but he believes that health care reform should have offered rewards, such as lower premiums, to people of normal weight.

Cancer experts say other aspects of the new law also disappointed them. ASCO’s Lichter says he was let down to see the end-of-life issues become too controversial to include. While the hope is that every patient will survive, the reality is that many will need to have a conversation with their physician about stopping care, he says. “We know from research that patients who have the discussion have a better quality of life through their final episodes and, in many instances, have a longer life,” Lichter says. “We had hoped and supported the provisions in the legislation that would begin to recognize the complexity of these end-of-life decisions.”

Health advocates say other work remains as well in the nation’s health care system. Chief among them is addressing the cost of care, which consumes more than 15 percent of the economy, more than any other nation (read "The Devil Is in the Dollars"). “Our biggest concern was that the legislation really dropped the ball with regard to health care costs,” says Robert Zirkelbach, a spokesman for America’s Health Insurance Plans, which represents the insurance industry. “The data are very clear that soaring medical costs are the primary driver of rising health insurance premiums. As those costs are going up, it’s making it more difficult for families to be able to afford coverage.”