I met Phyllis at a rally on Capitol Hill a couple of weeks ago. She was holding a sign that said, “Without Obamacare, I would be dead.” She shared her story of how the Affordable Care Act (ACA) helped her. As a full-time caregiver to her son for many years, and then her husband when he became disabled, she was only able to work sporadically and did not have access to employer-sponsored health insurance. She was uninsured for eight years, during which time she went to the emergency room and was hospitalized several times, amassing medical bills she could not pay. For years, she received daily calls from medical collection agencies, adding to her already stressful life as a caregiver.
After the Affordable Care Act (ACA) was implemented, she was eligible for Medicaid. “In a thirteen-month period, I lost my husband and my only son, and I was diagnosed with an aggressive form of breast cancer. I endured a year of chemotherapy and a double mastectomy, covered by Medicaid, and I am now a one-year cancer survivor,” she said. Last year, she turned 65 and qualified for Medicare. The ACA has helped bridge the “donut hole” in prescription drug coverage so that she can afford her yearly pharmacy bill of over $10,000.
Phyllis is one of the nearly 16 million cancer survivors in the United States who depend on access to quality, affordable health care. Comprehensive health insurance is critical for cancer patients and survivors, both for active treatment (surgery, radiation, chemotherapy) and for long-term survivorship to monitor for recurrence and late effects of treatment. Our constituents are at risk of losing access to coverage with legislative and administrative efforts to repeal, replace, and sabotage the ACA.
We breathed a small sigh of relief on March 24 when Speaker of the House Paul Ryan (R-WI) withdrew the American Health Care Act (AHCA), the ACA repeal/replacement bill, from consideration and declared that the ACA will be the “law of the land for the foreseeable future.” The AHCA would have resulted in 24 million people losing coverage and had a huge impact on the Medicaid program, a critical safety net for low-income Americans. But make no mistake, the fight to protect access to affordable health insurance for the survivors we represent is far from over.
Congress is discussing attempts to revive the AHCA, possibly making it even worse by eliminating more patient protections. One proposal would eliminate the ten essential health benefits or give power to states to eliminate them. These benefits are what make coverage worthwhile for people with serious health conditions, and eliminating or weakening them would result in “skinny” plans with very little coverage and erode other patient protections, like out-of-pocket maximums and the elimination of lifetime and annual caps on benefits. Another proposal would eliminate community rating, which would allow insurers to charge people with pre-existing conditions more for their plans.
Aside from any action Congress might take, the Trump administration has leverage to either strengthen or weaken the marketplace in a number of areas.
These examples illustrate that doing nothing to promote or maintain the health of the marketplace, let alone improve or repair known issues with the ACA, would harm consumers who rely on the ACA for health insurance. President Trump has signaled that he will let the ACA “implode,” though in its assessment of the AHCA, the Congressional Budget Office said the marketplace under the ACA would be stable. However, insurers are making decisions whether to offer plans on the marketplace in 2018 and setting rates, with a looming deadline of June 21. The current uncertainty about the future of the ACA will make it difficult to for insurers to commit to participating, leaving more consumers without options.
So, what does all this mean for patients and patient advocates? It’s a challenging situation for those of us who are working to protect patients. Constituents sent a strong message to Congress, through attendance at town hall meetings, phone calls, and meetings in the district, that they value their health insurance and do not want to lose it. As patient advocates, we must keep the pressure on lawmakers and the Trump administration to protect access to quality, affordable health insurance. We also need the support of other sectors of the health care industry, including providers, hospitals, and drug and device manufacturers to advocate on behalf of patients with serious illnesses. Without quality insurance, patients will not be able to access the treatments they need.
The National Coalition for Cancer Survivorship (NCCS) has mobilized and supported members of our Cancer Policy & Advocacy Team (CPAT) to attend town halls and make phone calls. We have resources on our website, including webinars, a tip sheet for contacting Members of Congress, and weekly updates. We encourage advocates interested in public policy to join CPAT to receive regular updates, engagement opportunities, and invitations to webinars and our symposium in Washington, DC June 25-27. We also invite patient organizations who would like to partner with us in our advocacy efforts to contact Lindsay Houff, Public Policy Manager.
Together, we can work to protect care for the patients and survivors we represent. People like Phyllis are counting on us.
Shelley Fuld Nasso (@sfuldnasso) is chief executive officer of the National Coalition for Cancer Survivorship (@canceradvocacy) where she advocates to transform the cancer care system for all cancer survivors and their families. She serves as a member of the National Cancer Institute’s National Council of Research Advisors (NCRA), the American Society of Clinical Oncology’s Cancer Survivorship Committee, and the National Quality Forum’s Consensus Standards Approval Committee (CSAC) and Stakeholder Council Leaders. Last year, she was a member of the National Cancer Moonshot Initiative’s Implementation Sciences Working Group. She is a graduate of Rice University and holds a Master of Public Policy from the Harvard Kennedy School. To learn more about the National Coalition for Cancer Survivorship: https://www.canceradvocacy.org/