So far, the Affordable Care Act and its mandate for insurance coverage has been a disaster. It isn't just that the website doesn't work, it's that the bulk of the people signing up for the program have simply switched from other insurance plans they already had, in order to get a subsidy. Relative to the population, very few people that wanted insurance were uninsured and so only about 11 percent of enrollments were actual uninsured people. It hasn't helped most uninsured people and without massive participation to offset higher costs, the insurance companies won't stay in: Aetna has left numerous state exchanges and says it may have to leave Obamacare entirely next year.

But there is one group the ACA is sure to help: cancer patients. Estimates are that the total cost of cancer care in the United States reached $125 billion in 2010. The rather fuzzy "economic toll" from cancer is claimed to be higher than the leading cause of death, heart disease, because cancer patients are living longer, which increases the cost of their continued care.

So for the administration that has bet its legacy on the ACA, there is a looming $125 billion question. How will cancer treatment be paid for?

As the health insurance exchanges have opened and heated debate about the Affordable Care Act (ACA) continues, many questions remain, including the $125 billion question: "How will the ACA affect the most expensive disease: cancer?"

Virginia Commonwealth University Massey Cancer Center is currently examining the effects of the ACA on cancer survivors and on Medicaid-eligible populations, employment-based insurance, health benefit exchanges and safety net providers.

The effect of Medicaid expansions on cancer screening

In 2006, Massachusetts expanded its health insurance coverage to nearly all residents of the state, becoming the policy template for the ACA, which will expand Medicaid coverage in many states. Massey researcher and principal investigator Lindsay Sabik, Ph.D., led a team to examine how cancer screening changed before and after Massachusetts' health care reform. She found that, overall, the reform appeared to have increased breast and cervical cancer screening, particularly among low-income women, suggesting a positive effect of near-universal coverage on preventive care.

"Preventive care is very important. Studies have shown that with the right approaches, a third of the most common cancers could be prevented. After seeing the impact of health reform on cancer screening in Massachusetts, we are interested in seeing if the insurance coverage expansions will have similar effects in other states," says Sabik, who gets funding from the National Cancer Institute (NCI) to research how state Medicaid policies are impacting breast and cervical cancer screening among low-income women around the country. "The results will help us develop strategies to reach the under-screened populations, which is critical for health care providers in reducing inequalities in cancer care and outcomes across socioeconomic and racial groups." 

The ACA's impact on the working cancer survivor

Cancer patients often experience fear of losing their health insurance if they cannot continue to work after diagnosis. Cathy Bradley, Ph.D., M.P.A, co-leader of the Cancer Prevention and Control research program at Massey, has focused her studies on the implications of the ACA on Americans dependent on employer-sponsored health insurance after experiencing a health shock, like cancer. Bradley studied employed married women newly diagnosed with breast cancer and compared the hours worked between those who were dependent on their own employment for health insurance and those with access to their spouse's insurance.

"Our findings show that breast cancer survivors who are dependent on employer-sponsored health insurance had a greater incentive to uphold a higher labor supply in order to maintain access to coverage. But with the ACA, cancer patients will no longer have to worry about losing their health insurance if they can no longer work. The law will give patients access to private health insurance outside of the employer-based system, which will have a positive impact on the working cancer survivor," says Bradley, principal investigator of the NCI-funded study.

And although Bradley states that having private health insurance outside of the workplace will not incentivize cancer patients to stop working, if they do choose to stop working or if they have to, it will allow them to devote their time to treatment and recovery.

Consumer ability to understand the ACA's health insurance exchanges

Since the ACA health insurance exchanges opened, many Americans have reported experiencing difficulty in selecting the best insurance plan for them. Massey researcher Andrew Barnes, Ph.D., is currently leading a study that investigates the ACA's Health Insurance Marketplace. He says, "The exchanges rely heavily on consumers' ability to process, comprehend and compare a vast amount of information on numerous insurance plans to make important choices." He has identified factors that may become a challenge for consumers in working with the exchanges, such as the consumer's perceived risk, their comprehension of their insurance terms and plan features and their health literacy.

"Preliminary data from our experiments using mock exchanges suggests approximately 50 percent of uninsured participants are purchasing health insurance in the experiments that, given their health status and utilization history, do not offer adequate coverage," says Barnes.

Barnes has also found that not only patients but doctors are having trouble navigating the exchanges. In another study, he asked 70 medical students and residents to choose the cheapest Medicare plan for a hypothetical patient, "Bill", from a list of three or nine plans. When given three options, two-thirds of the students and residents chose the right policy for Bill, but when given nine options, only one-third chose correctly.

The ACA's impact on safety net hospitals

The impact the ACA will have on safety net providers is another important question being studied. Safety net providers, like Massey, deliver a significant level of health care and other health-related services to the uninsured that they cannot receive elsewhere. In fact, our researchers have found that uninsured and Medicaid patients in Virginia have lower surgical mortality in safety-net hospitals than non-safety-net hospitals.

Safety net providers receive disproportionate share hospital (DSH) funding, which offsets the cost of care to uninsured patients and mitigates the underpayments by Medicaid. The ACA reduces DSH funding for safety net providers because many uninsured people will now be insured through the ACA. But, the increase in coverage among uninsured patients will be smaller than initially anticipated in states that don't expand Medicaid.

"Although the ACA will expand health insurance coverage to many who are currently uninsured, there will still be uninsured people remaining. The ACA will take away subsidies that offer support to safety net hospitals that provide medical care to those left uninsured. Financial support will be needed for these institutions following the implementation of the ACA in order for them to continue to afford to provide care for those remaining uninsured," says Sabik, principal investigator on the study.

Overall, Massey believes that the ACA will have a positive impact on patients by allowing for increased life-saving preventive care and the option to take time off work to focus on cancer treatment and recovery without fear of losing health insurance.

Choice overload may also be a factor, though likely an exaggerated problem so far. People don't starve at a buffet because they have too many choices. More of a concern will be that the uninsured are simply not signing up and the ACA will kill safety net providers and the care they can afford to provide to those who remain uninsured.