Cancer and the affordable care act: Despite some challenges, most cancer experts say the new law benefits patients and survivors


  • Carrie Printz

Most experts in the cancer community agree that the federal Patient Protection and Affordable Care Act (ACA) will benefit cancer patients, but they note that, as with any new, large change in the system, both its impact and flaws have yet to be fully determined.

The law ensures that individuals cannot be denied health insurance based on their medical history and limits annual and lifetime limits that insurers can impose for medical care. Furthermore, the ACA imposes new limits on out-of-pocket costs for deductibles, copayments, and coinsurance that likely will benefit many patients with cancer and survivors.

Because many more individuals will have insurance under the ACA and because studies have shown that patients with cancer who are insured have better outcomes than those who are not, the law “allows us to treat our patients in an optimal fashion without worrying about the cost to them or to our institution,” says Hagop Kantarjian, MD, chair and professor in the department of leukemia at The University of Texas MD Anderson Cancer Center in Houston.

He adds that the ACA will enable the government to play more of a supervisory role to stop fraud, waste, and excessive and unnecessary procedures or charges, resulting in a system that “delivers better-quality care at a lower cost.”

In addition, insurance companies are now covering standard-of-care costs for clinical trials, which will enable patients to more easily participate in this vital part of cancer research, Dr. Kantarjian notes.

Concerns About the Legislation

Despite all of the benefits the new law provides to patients, challenges still exist.

The ACA enables individuals who are uninsured and cannot obtain either any coverage or adequate insurance through an employer to purchase insurance through the federal and staterun marketplaces. The exchanges offer plans that are broken into tier levels according to their cost and benefits. Although the bronze plan premiums are the least expensive, these plans also have the highest deductibles, copays, and coinsurance.

The platinum plans are the most expensive but offer lower outof- pocket costs. For that reason, many cancer organizations recommend that patients with cancer (who have high medical expenses) purchase the gold or platinum plans.

The marketplace plans also limit the choice of referrals to particular physicians, and many top cancer centers are not participating in the plans, making treatment choice more limited, Dr. Kantarjian says.

At the same time, the US Supreme Court, while upholding the ACA, allowed states to reject the federally funded expansion of Medicaid. Because 23 states have rejected this expansion, an estimated 20 to 30 million individuals will remain uninsured, says Dr. Kantarjian, adding that these numbers also include illegal immigrants and people who declined to buy insurance. “We'll need to remedy that with additional legislation,” he says. “There is a lot of pressure on these states that did not expand Medicaid. They are letting poor people die because they can't have access to affordable health care.”

In the 25 states and the District of Columbia that expanded Medicaid, some low-income adults who were previously ineligible now can qualify for health insurance under Medicaid, which must provide the same benefits as those offered by the insurance marketplace.

Another concern about the ACA is that the process of purchasing insurance through the marketplace is confusing. In anticipation of this issue, the Cancer Support Community and a group of 18 partnering cancer and patient advocacy organizations launched the Cancer Insurance Checklist ( last September to help guide patients with cancer, those with a history of cancer, and those at risk for the disease to choose insurance plans through the marketplace. It is designed to help individuals understand the coverage within each plan they are considering, including services provided, where care is delivered, and medications and other common cancer treatments that are covered. The checklist also provides a worksheet to help consumers detail the costs associated within each plan.

Although the ACA is setting a cap on out-of-pocket costs, these still can be high, and patients also are concerned about the adequacy of the provider networks and drug formularies, says Michelle Johnston-Fleece, MPH, director of state initiatives for the Cancer Support Community Cancer Policy Institute. She points out that the Centers for Medicare and Medicaid Services is attempting to evaluate the network adequacy of marketplace plans. “In theory, the ACA is helping people have insurance coverage and better access to care, but it's not necessarily addressing some of those larger system issues such as oncology drug costs,” she adds.

Improving the System

Meanwhile, researchers at the Virginia Commonwealth University (VCU) Massey Cancer Center have been investigating the impact of the ACA on cancer survivors and those at risk of cancer as well as on Medicaid-eligible populations, the health insurance marketplace, and safety net providers.

Andrew Barnes, PhD, assistant professor of health care policy and research at VCU, conducted a study (which at press time was slated to be published in Health Services Research) regarding how 2 different groups of uninsured participants would select insurance through the new marketplace. One sample was an Internet-based group comprised largely of young, healthy, tech-savvy individuals (n=276), whereas the other consisted of low-income, rural Virginians (n=161). Both groups were given hypothetical insurance decisions to make about purchasing insurance. Investigators then evaluated whether people purchased enough coverage given their health care needs. “We found that about 40% of people didn't buy enough coverage,” Dr. Barnes says. “Insurance comprehension—whether or not people understood insurance—was a good predictor of which people made good decisions.”

Health literacy and numeric literacy were other important determinants, as well as the individual's tendency toward risky behavior. Smokers, for example, often are prone toward risk taking—opting for smaller rewards now versus larger rewards later, which also can lead them to make riskier decisions regarding insurance coverage, such as opting for cheaper rates, he says.

This summer, Dr. Barnes and his colleagues will undertake a second study, again with approximately 200 rural Virginian and 200 online participants, to determine their health status and whether and what insurance decisions they made this year. Researchers will then help patients estimate their expected health care costs and determine which plan best fits for them. The goal, he says, is to determine whether participants make better choices over time.

“There are 3 policy options for improving the health insurance exchanges,” Dr. Barnes says. “One is to teach people better math skills, which is hard to do. A second is to get navigators in these communities to help people make these decisions, and a third is to make it much easier for consumers to find the information they need to compare plans and think about how much health care they'll need in the next year.”

Currently, the way is designed, the third option is not easy, but it can be improved, Dr. Barnes says, adding, “It's not clear that the multiple insurance plans people are choosing from are that different, so many choices might not be good.” Ways to better assist consumers' decision-making include using more pictures and graphs as well as describing specific scenarios, he says.

Dr. Barnes' VCU colleagues, Lindsay Sabik, PhD, and Cathy Bradley, PhD, also have been researching how the ACA may potentially affect health care consumers. Dr. Sabik specifically examined how the 2006 Massachusetts expansion of health care coverage to nearly all residents (a model similar to the ACA) affected cancer screening in the state. “We found it improved screening, especially mammography, but it took about 3 years for those effects to show up,” says Dr. Sabik, who is currently being funded by the National Cancer Institute to research how expanded state Medicaid policies are affecting breast and cervical cancer screening among low-income women around the country.

Dr. Bradley, meanwhile, studied employed married women who were recently diagnosed with breast cancer and compared the hours worked between those who depended on their own employment for health insurance versus those who had access to their spouse's insurance.

She and her colleagues found that women who were dependent on their employers' health insurance had an incentive to work more hours and to stay employed.

However, under the ACA, patients with cancer will no longer have to worry about losing their health insurance if they cannot work, if they want to find a different job that does not offer health insurance, or if they want to work fewer hours. Approximately one-half of patients she surveyed said they would change jobs if they were not dependent on their employer for insurance, she says.

Dr. Sabik also expressed concern that, under the ACA, safety net hospitals such as Massey Cancer Center are scheduled to lose funding. These facilities receive Disproportionate Share Hospital funding, which offsets the cost of care to uninsured patients and mitigates underpayments by Medicaid. However, the ACA reduces this funding for safety net providers, because many uninsured people will now be insured. Nevertheless, some uninsured patients will remain, particularly in states that do not expand Medicaid, and safety net hospitals will still need to provide care to this population.

“Safety net hospitals continue to play an important role for underinsured populations and in reducing disparities,” she says.

In theory, the ACA is helping people have insurance coverage and better access to care, but it's not necessarily addressing some of those larger system issues such as oncology drug costs. —Michelle Johnston-Fleece, MPH