For decades, U.S. policymakers have tried to offer health insurance to the entire country. Although politicians made progress, through Medicare and Medicaid and most recently through the Affordable Care Act (ACA), the main goal continues to be elusive.
The ACA implemented reforms designed to improve the accessibility, affordability, and quality of health care. Last April, health care experts convened for a panel discussion at the annual meeting of the American Association for Cancer Research of how the law affects cancer research and treatment. Their assessments were mixed. Although the ACA has improved access to cancer treatment, prevention services, and clinical trials, they agreed, it has done so unevenly, and many people still grapple with insufficient coverage.
“The ACA is taking us in a positive direction, said panelist Ernest Hawk, M.D., M.P.H., vice president for cancer prevention at the University of Texas M. D. Anderson Cancer Center in Houston, “but it hasn’t gone far enough in addressing the needs especially of poor and underserved people with cancer who have either no or limited health insurance.”
Panel moderator Gil Omenn, M.D., Ph.D., director of the Center for Computational Medicine and Bioinformatics at the University of Michigan in Ann Arbor, credited the ACA with boosting preventive services, as illustrated by more people getting screened for colon, cervical, breast, and other cancers.
Hawk cited government statistics indicating that 137 million Americans had access to preventive-services coverage without cost sharing in 2015, compared with only 71 million before the law.
“The ACA is taking us in a positive direction, but it hasn't gone far enough in addressing the needs especially of poor and underserved people with cancer who have either no or limited health insurance.”
“That’s a tremendous improvement,” he said. Hawk singled out improvements in rates of cervical cancer screening and human papillomavirus vaccination among women aged 19–25 years who receive dependent insurance coverage from their parents. Rates of early-stage cervical cancer diagnoses and fertility-sparing treatments had both increased for this age group, he said. Moreover, 1.1 million additional women had begun the human papillomavirus vaccination series and 840,000 additional women had completed it. But Hawk noted that cancer screening rates are also lower in the 19 states that declined Medicaid expansion under the ACA. Specifically, the odds of receiving mammograms and Pap smears are 13% lower in those states, he said, with the differences most pronounced among uninsured women.
William Dalton, M.D., Ph.D., chief executive officer at M2Gen, a biotechnology company in Tampa, Fla. highlighted access disparities in clinical trials. The ACA prohibits insurance companies from dropping or denying coverage for patients who participate in clinical trials at in-network facilities. In addition, it requires insurers to cover routine costs of care. But in practice, Dalton said, insurers commonly deny coverage in clinical-trial settings. He cited a recent survey showing that 63% of queried cancer centers had reported denials of insurance payments during clinical trials, specifically for standard-of-care services that patients would otherwise receive. Often, he added, insurance companies wouldn’t pay for the tests needed to determine eligibility, such as tests for genetic mutations targeted by experimental precision treatments.
“So we still have a ways to go, and ambiguities in the law need to be addressed, since they’re frankly being used by insurance companies for insurance denials,” Dalton said.
Panelists also highlighted the growing role of comparative-effectiveness research under the ACA. The law created a new funding entity, the Patient Centered Outcomes Research Institute (PCORI), specifically to support studies that compare performance among approved treatments. PCORI-funded studies investigate, for instance, different ways to manage low-risk prostate cancers that might never be lethal during a man’s lifetime, or which type of imaging technology works best to show small breast tumors. The goal of this research is to generate real-world observational data that inspire changes in practice.
“PCORI was designed to fit a research niche that’s not typically addressed by the National Cancer Institute,” said Scott Ramsey, M.D., Ph.D., a physician and health economist at the Fred Hutchinson Cancer Research Center in Seattle.”
Launched in 2010, PCORI’s investments into cancer research totaled $176.4 million as of July 2016. “Since the ACA, comparative-effectiveness research has broken into the broader consciousness of the cancer research community,” said Ethan Basch, M.D., professor of medicine and public health at the University of North Carolina Lineberger Comprehensive Cancer Center in Chapel Hill. “People who had never heard of it are now expressing interest.”
But Basch pointed out that barriers remain. In particular, comparative-effectiveness studies require integrated electronic health records and other data collection platforms at different institutions so that information can be shared.
“And though we’re making progress in this area, electronic health records are still too unstructured,” Basch said. “We need better ways to integrate patient outcomes with cancer registries. Without that, we can’t obtain a full picture of the patient experience.”
Dalton said that there are “huge gaps in the development of health care informatics systems that we need to address through standardization and collaboration.” He added, “It comes down to questions of culture: How much information are we willing to share?”
Omenn said that one of the benefits of the ACA is simply that it increased the ranks of the medically insured. ‘More attention to screening and prevention opens up new questions to investigate,’ he added. “And potentially opens up a market of millions of people who can now afford to pay for their care.”
But Hawk said challenges remain with meeting the needs of parts of the population that the ACA still can’t reach.
“The biggest barrier to extending coverage to those subpopulations is fear,” he said. “Medicaid is a state and federal partnership. And when federal incentives for Medicaid expansion disappear, states will be left holding the financial bag. How we’re going to address that, I don’t know.”
