At 4:29 PM on May 26 of last year, my husband’s doctor said to him, “I have bad news. You have cancer.” While I have delivered those words countless times to my patients, I now understand in a way I could not before, how this news can turn one’s world on its axis. As a doctor, I have seen the unprecedented uncertainty my patients and their loved ones face when I confirm a cancer diagnosis. Decisions have to be made—often quickly. What is the best treatment path? What will the next weeks and months look like? Will I be able to work? How will my family cope? My personal journey after my husband’s diagnosis made me more acutely aware that despite tremendous advances in detecting, diagnosing, and treating cancer, uncertainty remains a potent side effect of the disease.
Now imagine adding on worry and uncertainty about what changes may come with changes to the Affordable Care Act (ACA) and how the many nuances of these alterations may affect your ability to access cancer care. Will you continue to have health coverage? Will you be able to afford the cost of your care? And if not, will you have to stop life-saving treatment? Even as a healthcare professional with a stable job and comfortable income, I feel the pressure of these concerns and the worry of what would happen to my husband’s care if I no longer had a job with insurance benefits.
The future of healthcare in America
In Washington, D.C., debate about the future shape of the Affordable Care Act (ACA) continues even though the American Health Care Act (AHCA), legislation designed to repeal and replace the ACA was withdrawn before it could be voted down. Republicans have already introduced a new bill to replace the ACA and parts of the act remain vulnerable to provisions administered by the Department of Health and Human Services.
Meanwhile, cancer patients and survivors across the country are coping with fears about access to health insurance coverage, affordability of that coverage, and access to care. Worries that are significantly compounded for those without financial stability, as highlighted in a February 23rd Washington Post article. As one cancer survivor interviewed for the article commented,
“For cancer survivors, we literally live and die by insurance.”
To put this in perspective, consider that in 2016, the American Cancer Society estimated that there were 15.5 million cancer survivors in the U.S., which is approximately 4.8% of the population. According to the National Institutes of Health, this number is expected to rise to almost 19 million by 2024. While the overall cancer death rate is declining and cancer survivors are increasing, there is still much work to be done, particularly as risk factors such as aging and obesity are expected to increase cancer rates.
The Association of Community Cancer Centers
In my nearly 20 years as a practicing medical oncologist, I’ve had the privilege of caring for patients in rural communities, as well as in urban and academic settings. My experience as a physician, as president of the Association of Community Cancer Centers (ACCC), and now as the spouse of a cancer patient, has driven home some certainties. I am certain that every day in cancer programs across the country, multidisciplinary teams are delivering quality cancer care to patients in their home communities. I am certain that these patients are anxious for our healthcare system to right itself. They need and want treatment now. I am certain that cancer patients do not need the added stress of worrying about accessing care—and neither do healthcare providers on the frontlines of cancer care delivery.
Over the past several years, the oncology community has increasingly come to understand the critical need to address the financial burden cancer can place on patients and their loved ones. The economic havoc cancer can wreak impacts those at all income levels of our society—insured and uninsured, young and old, those living in urban as well as rural communities. The Association of Community Cancer Centers’ (ACCC) 2016 Trends in Cancer Programs Survey found nearly all healthcare professionals (83%) reported the cost of cancer care drugs is the top challenge and concern, followed by reimbursement of patient care services like financial advocacy and nurse navigation.
In response, many cancer programs and providers across the country have added financial advocates or financial navigators to their staff. The 2016 Trends in Cancer Programs Survey found 64% of healthcare professionals are offering cancer patients the services of financial advocates or counselors. These new members of the cancer care team help patients through the intricacies of health insurance plan coverage, pre-certification/prior authorization processes, accessing patient assistance programs, and more. Through its Financial Advocacy Network, the Association of Community Cancer Centers provides tools and resources such as the 2016 Patient Assistance & Reimbursement Guide and the new Patient Assistance App. This mobile device app gives financial advocates easy access to payment assistance and reimbursement programs. ACCC also is supporting those in this new role with a training Boot Camp for staff who are working to assist patients with financial and insurance reimbursement issues.
Cancer is policy agnostic
Cancer is policy agnostic. Cancer won’t wait while policymakers and legislators debate how best to reform the U.S. healthcare system.
As Congress and the Trump administration moves forward on healthcare reform, we need to remember why we set out to tackle this in the first place—to improve the care provided to all Americans. Congress has the power to put aside partisanship and build on the undisputed improvements made through the ACA. Congress has the power to provide clarity about how these improvements will affect our nation’s cancer patients, their families, and their healthcare providers. Moreover, Congress has the power—and the responsibility—to ensure their constituents that patient-centered protections supporting access to care will remain. The Trump administration and Congress have the power to alleviate some of the unbearable uncertainty for cancer patients and their families. As you decide what direction to take, we ask that you put patients first.