Eliminating Regulations Is Freedom—But for Whom?

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Analysis Health Systems

Eliminating Regulations Is Freedom—But for Whom?

Katie Klabusich

"Without the ACA, I will lose not only years on my quality of life, but [also] my identity, my few opportunities to contribute to the economy, my community, and the world around me.”

Congress welcomed the new administration by paving the way for the repeal of the Affordable Care Act (ACA) in the House and Senate. And with his latest nomination, this time to the U.S. Supreme Court, President Trump proved that he’s going to make good on campaign promises to be lawmakers’ ally in their attempts to dismantle the ACA and other regulations that affect the quality of life for millions of people.

“Obamacare is a disaster. You know it. We all know it,” Trump said during an October debate.

Mr. President, I must disagree. Instead of focusing on fewer regulations, members of Congress should focus on governing and serving the people who elected them into office—especially since the ACA reportedly is more popular than it’s ever been.

I have long been frustrated by simplistic cries of “End regulations because FREEDOM!”—and not just because Republican legislators from the state house to the White House spouting such bumper-sticker slogans seem to have all the time in the world to regulate and police pregnancies. I am alive and even able to work right now despite several chronic conditions because of the regulations of the ACA, and I am not alone.

Sex. Abortion. Parenthood. Power.

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“I lost my ability to work outside the home about a year ago, and through the ACA I’ve been able to earn a living through self-employment,” author and speaker Abby Norman told Rewire. “I can only do that through, at the very least, adequate access to health care. Without the ACA, I will no longer have this. Without the ACA, I will lose not only years on my quality of life, but [also] my identity, my few opportunities to contribute to the economy, my community, and the world around me.”

Threatening to rip health care away from people with illnesses and/or disabilities, veterans, children, elderly Americans, and other vulnerable populations isn’t just bad policy, it’s literally creating a disaster scenario for millions of us. But those of us who would be affected by policy changes and rightly fear for our health and even our lives aren’t waiting for Trump and company to make good on their promises; we’re speaking out now.

Life-Saving Regulations

The ACA regulations people like Norman and I have benefited from include (in part): ending discriminations for pre-existing conditions; fully covering preventive care without co-pays; ending lifetime benefits limits; expanding coverage of maternity and prenatal care and rehabilitative care; allowing young people to stay on their parents’ insurance until age 26; and, most importantly for so many of us, offering subsidies that lower our monthly premiums dramatically. Last year, for example, my $237 monthly subsidy on my $329.13 premium saved me $2,844. That savings is on top of the more than $2,000 per month I save because my health-care costs are covered with minimal co-pays (typically $3 to $5).

Norman, meanwhile, lives with multiple conditions, including two autoimmune disorders her physicians are still evaluating. Because she’s in her 20s, she faces a lifetime of expensive care. Without the ACA regulations, not only would she not be able to afford current treatment, she would most certainly hit a lifetime cap on coverage and be unable to change companies if discriminations based on pre-existing conditions are reinstated. Trump has said he wants to keep the pre-existing conditions protections, but until there’s evidence that the GOP-majority Congress has approved such a policy in its replacement law, his words bring little comfort.

“I’m suffering from a progressive disease that needs to be monitored and followed; this requires blood work, MRIs, and other costly tests,” said Norman. “Treatments would be a whole other financial leap to take entirely. One treatment would cost upwards of $70,000 a year—more than I make in a year—without insurance. But to go even four years without treatment, or without being able to monitor my disease, I could end up far worse off than I would have with treatment and the apparent ‘privilege’ of being able to see my doctors.”

Without the ACA-supported ability to make a living, Norman would likely end up on SSI disability and Medicaid, which is easily more expensive for the government than the cost of her premium subsidy. Her previous experience trying to find specialists willing to take Medicaid has made her skeptical about which of her treatments she would have access to, should parts of the health-care law be repealed and converted to block grants controlled by individual states. Analysts at the nonpartisan Center on Budget and Policy Priorities estimate that block grants for Medicaid “would institute deep cuts to federal funding for state Medicaid programs and threaten benefits for tens of millions of low-income families, senior citizens, and people with disabilities.”

This could mean hundreds—if not thousands—of dollars in added expenses.

“One medication that I’ve been taking for quite some time gave me back the ability to eat. The chronic intractable nausea I have suffered from for years resulted in malnourishment and weight loss that not only had a clearly negative impact on my disease, but destroyed my quality of life. The medication, if I did not have insurance, would cost me $1,200 to fill. I would never be able to afford to keep taking it,” said Norman.

Katie Hnida, an author, speaker, and anti-sexual violence advocate, told Rewire her health and ability to work would also be in jeopardy without the ACA due to chronic conditions, including endometriosis.

“I work for myself and, before the ACA, my options were incredibly limited. Losing the ACA will mean I lose any semblance of affordable care, my ability to see my specialist, and access to affordable medication,” Hnida said. “The ACA has literally been a lifesaver. It’s been especially important because I’ve used birth control pills for years to control the endometriosis. There were some months when I would pay over a hundred dollars for a pack of pills—when using them solely for medical reasons.”

The ACA has afforded people like me, Norman, and Hnida the freedom to work for ourselves—which would not be the case if the states took over regulating insurance coverage. This has also been especially important to Pittsburgh-area small business owner and single mother of two, Susan Helene Gottfried. She was going through a divorce in 2012 and was comforted knowing that affordable premiums through the ACA were right around the corner, so she wouldn’t have to go very long without insurance.

“To not have to go to work just for an insurance policy, it offered me a lot of stability,” Gottfried told Rewire. “At the time, my kids needed me to be home. [The consistency of their mom being home] went a long way toward their mental health and their adjustment after the trauma of a divorce.”

In January 2016, Gottfried found out just how valuable her ACA premium is to her family. She was riding her bike in her basement using an indoor bike trainer stand. When the stand gave out, she fell to the ground with the bike crashing on top of her. The handle punctured her eye and emergency surgery was necessary. Even with specialists and multiple surgeries, doctors weren’t optimistic that she would be able to see.

Just over a year later, she can see, but still suffers from light-sensitivity and other effects of the accident. Gottfried’s long-term care will only be an option for her if the ACA protections for pre-existing conditions, lifetime coverage limits, and access to specialists, as well as the affordable premiums, stay on the books.

“The kids are older now—they’re 16 and 14, so they don’t need me around—so it’s less of an issue if I had to go and get a day job,” she said, “but technically I’m still concussed. Even if I had been able to go get a day job, I might not have been able to do a day job,” because most places of work have fluorescent lights.

Gottfried says everything about her life would be different without the surgery the ACA covered—starting with her family’s finances. She’s grateful that of the $105,000 in bills so far, she’s spent less than $1,100 out of pocket. With two high school-aged children, and one hoping to eventually complete a PhD, the cost saved on those medical bills looks a lot like tuition money.

“I have always been very straight with my kids,” she said. “So, I say to them, ‘If Congress really does repeal the ACA, I will probably not have health insurance.’ They know how much the whole eye adventure has cost in terms of the medical bills … They look at me and say, ‘Will we be able to get me through college?’ And I say, ‘Yes, [I’ll find a way.]’”

When asked what she would say to the president and his colleagues in Congress, Gottfried talked about her children.

“Why don’t I deserve to get to see my children get married? Why do I have to risk being blind and not watching my children graduate high school and college and not being able to see my grandchildren? What gives them the right to take that away from me?”

Every Voice Matters

It’s not just individuals whose lives have been improved or who might be unable to get insurance without the ACA who remain fans of the insurance industry regulations; insurance companies, which benefited from millions of new customers, and doctors overwhelmingly support leaving it in place.

Fifteen percent of physicians participating in a recent survey by the Johns Hopkins University School of Medicine support an ACA repeal. Even among doctors who voted for Trump, only about 38 percent want the ACA done away with.

Sarah Eisenstein Stumbar, a primary care doctor, reproductive rights advocate, and assistant professor of family medicine, delivered a speech to the South Florida Women’s Rally in Miami on January 21 that explained why she supports the ACA and fears for those who need care.

“This is a dangerous moment for me and my patients. I feel an urgency for us all to stand together against the punishment that will result if Trump and his Republican Congress destroy Obamacare,” she said. “I am here today speaking for my patients, some of the nearly 2 million Floridians who have gained health insurance under the Affordable Care Act and some of the nearly 2.5 million who remain uninsured.”

Stumbar said that even with the ACA’s imperfections, its passage told millions of people that health care is a human right. Recently, she has been unable to comfort patients who’ve been asking what happens without its protections.

“In the aftermath of this election, doctors like me, who provide care to poor and vulnerable patients, have been facing exam rooms full of questions and the inability to guarantee our patients that they will have continued access to insulin, contraceptive pills, or specialist referrals,” she said. “The Affordable Care Act has given my patients access to pulmonologists and ophthalmologists, imaging tests, and preventative health care like vaccinations, blood work, and cancer screenings. It has given my young, female patients access to many forms of contraception and abortion, both of which are necessities for their sexual health and freedom.”

Those are not freedoms this administration or the majority of Congress cares about. Our interests are not their interests, and we need to continue reminding them of this. As Rep. Barbara Lee (D-CA) told me just a few weeks ago, our voices matter—even in a time when it feels like we won’t be heard.

“We need everyone to bring the ‘street heat’ and make sure that their voice is being heard at all levels—local, state and national,” Lee said. “Keep picking up the phone, writing your representatives, and going to their town halls.’”

In addition to calling our representatives, organizing locally builds community and empowers those of us who fear what’s coming. It’s also never too early to turn to elected officials at the state and local levels to ask them to resist and plan. Republican governors have shown reluctance to support Trump and typically moderate Democrats like Gov. Jerry Brown (CA) have been outspoken in their opposition to the administration’s early actions.

“Make no mistake: The future is uncertain and dangers abound,” Brown said in his annual State of the State address last week. “Whether it’s the threat to our budget, or to undocumented Californians, or to our efforts to combat climate change, or even more global threats such as a financial meltdown or a nuclear incident or a terrorist attack, this is a time which calls out for courage and perseverance. I promise you both.”

We can and must call on more elected officials to publicly oppose the Trump-Pence agenda and continue to show up en masse to provide those lawmakers the political capital to stand against cuts and repeals to regulations like the ACA. It is not hyperbole to say that lives depend on it.