Patients, survivors, advocacy groups and politicians share their views on the upcoming repeal of the Affordable Care Act.
Last week, both chambers of Congress voted on the measures that started the process of repealing parts of the Affordable Care Act (ACA) by using a special budget reconciliation, which is immune to filibusters. Now, efforts to repeal the act are continuing to move forward.
Today, President-elect Donald Trump’s nominee to lead the US Department of Health and Human Services, Congressman Tom Price (R-GA), a physician and staunch opponent of the ACA, testified before the Senate Health, Education, Labor and Pensions (HELP) Committee in the first of two confirmation hearings. Trump has previously stated that he has a plan to replace the law, but is waiting for Price’s confirmation to put that plan forward.
A report by the nonpartisan Congressional Budget Office and Joint Committee on Taxation released January 17 estimated that a full repeal measure would increase the number of uninsured individuals by 18 million in the first new plan year following repeal, and premiums for individual policies purchased through the marketplaces would increase by 20 percent to 25 percent relative to current projections.
During its vote last week approving the budget blueprint, the Senate rejected a number of amendments proposed by Democratic legislators that would allow imports of prescription drugs from Canada, protect rural hospitals, and an amendment especially important to patients with cancer and survivors that would ensure continued access to coverage for people with preexisting conditions.
As Kathy LaTour, cofounder of CURE
magazine and a breast cancer survivor, notes, “There is no doubt the Affordable Care Act needs tweaking, but let’s not lose the critical pieces.” Among those she identified that are essential provisions for the cancer community are the law’s ban on denying coverage due to preexisting conditions and the prohibition on lifetime or annual dollar limits on benefits.
Republican congressional leadership stress that they want a stable transition between the old healthcare law and the new one, a point underscored by Price in today’s hearing: “No one is interested in pulling the rug out from anybody … individuals losing coverage is not our goal, not our desire and not our plan.”
Senator Patty Murray (D-WA), the ranking minority member of the Senate HELP committee offered another perspective at the hearing, reflecting concerns of her colleagues and others about repealing the law with no concrete bill on the table to replace it.
Committee member Senator Al Franken (D-MN) described at the hearing how, “In 2008, I would go around the state of Minnesota, and in every VFW hall and every cafe, I would see a bulletin board for a fundraiser for someone who had reached their lifetime coverage limit … I am very worried, and so are millions of Americans.”
Price responded that, “We all share a concern that the American people have access to highest quality care in the world … I hope that we’re able to work together if I’m given the privilege of serving as Secretary of Health and Human Services to solve these challenges facing our nation.”
Politics aside, individuals, advocacy groups, and professional societies are expressing concerns over repealing the law before specifics of the replacement are known. The American Medical Association (AMA), for example, has stressed that any repeal be accompanied by a comprehensive layout of the replacement plan.
In an open letter to congressional leadership, AMA CEO James L. Madara, M.D., wrote: “Patients and other stakeholders should be able to clearly compare current policy to new proposals so they can make informed decisions about whether it represents a step forward in the ongoing process of health reform.”
Policymakers on both sides of the aisle acknowledge that the ACA is imperfect and improvements are needed. Some who are insured under the Act have experienced higher premiums and deductibles and/or little or no choice as to their insurance provider, for example. The emergence of narrow networks under the ACA has limited some patients’ access to specialized care, including their preferred cancer center physicians.
As Senator Susan Collins (R-ME) said at today’s hearing, “It’s very important to clarify that we’re seeing double-digit premium increases, higher copays and far fewer choices, as more and more insurers give up and flee the market.” She stressed, however, “I think most people reject the idea of repealing the law with no replacement.”
Until more specifics of the Republican replacement plan are revealed, individuals insured under the Obamacare exchanges, its Medicaid expansion and others concerned about escalating healthcare costs — including prescription drug prices — worry about what full repeal will mean to the healthcare system.
“Fixes to the ACA — beyond what Republicans are proposing — are needed to shore up the long-term viability of our healthcare system for both patients and survivors,” according to Leah Ralph, Director of Health Policy for the Association of Community Cancer Centers.
Making Patient-Centered Care a Priority
In a recent statement, the American Society of Clinical Oncologists outlined seven principles for patient-centered health care:
- All Americans should have access to affordable care—regardless of income or health status
- Reform efforts should ensure no disruption in care
- Delivery of high-quality cancer care by a cancer specialist
- Promotion and protection of cancer screening and prevention
- Access to clinical trials
- Value-based care
- Patient engagement in cancer care
The American Nurses Association’s principles for health system transformation echoe many of these points:
Patients and Survivors Speak Out
- Universal access to essential healthcare services for all citizens and residents
- Primary, community-based and preventive services with innovative, technology-driven, acute, hospital-based services
- Mechanisms to stimulate use of healthcare services while supporting those who do not have the means to share in costs
- Ensure a sufficient supply of a skilled workforce dedicated to providing high quality healthcare services
Though the ACA has had its challenges, many survivors of cancer and patients currently in treatment see the positives of this law as “progress” and are concerned about what is to come with a replacement.
Dawn Eicher is a mother of two and a survivor of stage 4 metastatic colorectal cancer. In an interview with CURE
magazine, she explained the fear that she and other patients are facing during this uncertainty:
“It’s really frightening to think about preexisting condition (clauses) and maximum lifetime limits (being brought back). It takes a stage 4 patient six months to a year to blow through a $1 million lifetime cap. And with preexisting condition clauses, someone like me wouldn’t be able to switch insurance or move … It’s all devastating to anyone with a chronic condition, and we’re panicking.”
Jessica Karabian, a wife and mother with incurable breast cancer who blogs for Diagnosis: Cancer, voiced similar fears to Philly.com blog: “My greatest concern is that [health insurance] will go back to what it was before Obamacare, and that Trump will unravel all the progress.”
Most of Karabian’s treatments are covered by Medicare as she is considered disabled, but the supplementary policy through ACA is necessary for her. “If my supplement is dropped,” she explained, “I can’t afford treatment and I die. I’m afraid this will give me even less time than I already have.”
More than 50 #SaveHealthCare and #OurFirstStand rallies were held across America to defend the ACA on January 15. One attendee at the rally in Los Angeles was Steve Martin, an ACA beneficiary, whose poster read: “I was 26 when I was diagnosed with cancer. The ACA saved my life.”
Price’s second appearance will be January 24 when he is scheduled to testify before the Senate Committee on Finance. According to the date set in the budget bills Congress approved last week, Republicans could have a repeal of Obamacare ready as early as January 27, with assurances that a replacement of the law will soon follow.
Additional background research and reporting for this article was done by Ellie Leick and Lauren Green.