As Congressional Republicans continue taking steps toward repealing the Affordable Care Act without providing a detailed, workable plan to replace it, more people are speaking out against ACA repeal.

GOP Governors John Kasich of Ohio and Rick Snyder of Michigan are speaking to journalists about how the ACA’s Medicaid expansion has helped their states. Governor Snyder explained to The Detroit News that the state accepted the Medicaid expansion but added requirements for recipients earning between 100% and 133% of the federal poverty level, and that the program is working and has the potential to reduce long-term health costs. More than 642,000 people have enrolled in the Healthy Michigan plan (the state’s Medicaid expansion), and researchers have found fewer uninsured hospital stays as well as other economic benefits to Michigan from the increased federal funding.  Governor Kasich told The Atlantic that approximately 700,000 Ohioans have gained coverage. “Our hospitals needed Medicaid expansion. It has worked very well in this state,” he said.

Individuals who have benefited from the Affordable Care Act are also speaking out. Arizona small-business owner Jeff Jeans addressed House Speaker Paul Ryan at a televised town hall meeting. The Washington Post’s Amy Goldstein reports:

“Just like you, I was a Republican,” Jeff Jeans began. Standing on the stage, the Wisconsin congressman broke into a grin as Jeans said he had volunteered in two Republican presidential campaigns and opposed the Affordable Care Act so much that he’d told his wife he would close their business before complying with the health-care law.

But that, he said, was before he was diagnosed with a “very curable cancer” and told that, if left untreated, he had perhaps six weeks to live. Only because of an early Affordable Care Act program that offered coverage to people with preexisting medical problems, Jeans said, “I am standing here today alive.”

The speaker’s smile vanished. His brow furrowed.

“Being both a small-business person and someone with preexisting conditions, I rely on the Affordable Care Act to be able to purchase my own insurance,” Jeans said. “Why would you repeal the Affordable Care Act without a replacement?”

Disability rights attorney and PhD candidate Robyn Powell shared her story and analysis at Vox:

As a disabled woman, I am terrified by what Trump’s presidency means for me and my community.
… I have arthrogryposis, a physical disability that affects the way my joints and muscles developed. I use a wheelchair and have limited use of my arms and legs. My disability is purely physical and has no direct bearing on my health status. Nonetheless, my ability to receive adequate and accessible health care has always been a challenge. As a child, my family had to fight to get me health insurance coverage because of my “preexisting condition.”

… Obamacare doesn’t only have important implications for the health of people with disabilities; it also has improved employment. This is thanks to Obamacare’s Medicaid expansion, which provided additional federal funding to states that expand eligibility rules so more people qualify. A recent study found people with disabilities who live in states with Medicaid expansion are more likely to work.

Before Medicaid expansion, in many states, if you earned any income, you were no longer eligible for Medicaid. This meant that people with disabilities had to choose between getting out of bed and having a job. Medicaid expansion allows states to increase the amount of money people can earn working (the limits are still fairly low) while receiving Medicaid benefits. Hence, people with disabilities are able to have a small income and still keep their vital insurance. This is surely a win-win: People with disabilities get to work, which in turn means we get to pay taxes!

Cameron Zeigler was a 44-year-old social worker who had to stop working after a diagnosis of Parkinson’s disease. Zeigler now has coverage purchased through Virginia’s ACA exchange, and writes in a New York Times op-ed:

My medications for symptoms related to Parkinson’s disease and dementia cost about $900 per month, but under my Obamacare coverage, I pay only $130 per month.

Without these medications, and therapy, I would lose the capacity to function cognitively and emotionally. Patients like me are at a high risk for suicide because of depression stemming from cognitive decline. If I stopped receiving the care I needed, I would most likely end up living in a hospital or nursing home to keep me safe, which would cost the government much more money.

My prognosis is not good, but Obamacare gets me the treatment I need so that I can be myself as long as possible. Without this insurance, my illness would progress more rapidly, until I died.

The “pre-existing condition” issue Jeans and Powell both mentioned is a crucial one when considering ACA repeal. Before the law was passed, insurers could deny coverage to people based on their pre-existing conditions, charge exorbitant premiums because of health problems, or issue policies that excluded coverage for health problems related to those conditions. Under the ACA, insurers can no longer deny coverage based on pre-existing conditions or refuse coverage for those conditions, and premiums can only vary based on age and smoking status, with a maximum three-to-one ratio between the lowest and highest premium. Insurers can no longer set maximum amounts they will spend on any enrollee over that person’s lifetime.

A Kaiser Family Foundation analysis found 27% of US adults under age 65 “have health conditions that would likely leave them uninsurable if they applied for individual market coverage under pre-ACA underwriting practices that existed in nearly all states.” Being denied insurance coverage, or being unable to afford premiums that can exceed a worker’s income if not subsidized, can leave those with pre-existing conditions unable to afford the treatments they need to function.

Surgeon, author, and researcher Atul Gawande took to Twitter and started using the hashtag #the27percent to collect stories of people who’d be uninsurable in the individual market without the ACA — a group that includes Gawande’s son. STAT’s Bob Tedeschi collected some of the early tweets, which reference cancer, Crohn’s disease, and other serious conditions.

I’m in the 27% myself, as are all the members of my immediate family — except my father, because he’s now covered by Medicare. I was first denied insurance at the age of 21 based on my history of allergies; now, having been diagnosed with a connective tissue disorder, I’m even less likely to be offered a plan if I were to lose my employer-sponsored coverage and the ACA were to be repealed.

The group Patients with Pre-existing Conditions is asking lawmakers and candidates to sign a Patient Protection Pledge to (one) Oppose any and all efforts to deny health care to patients with pre-existing conditions; and (two) Oppose any and all legislation that limits access to affordable, quality health care for patients with pre-existing conditions.

If Republican members of Congress want to reassure this 27% of the population, as well as everyone who thinks health history shouldn’t be a barrier to affordable, high-quality health insurance, one option would be to keep the ACA and work to improve it. If they’re determined to repeal it, they should first offer a detailed plan for replacing it and let the Congressional Budget Office calculate what the costs and outcomes are likely to be. It’s good to see that Senator Lamar Alexander (R-TN), chair of the Health, Education, Labor and Pensions Committee, has said he doesn’t want to see the ACA repealed until “there are concrete, practicable reforms in place.” However, it’s not possible to keep only the popular portions of the law (while shedding unpopular things like the individual mandate), have a functioning and sustainable insurance market, and reduce federal spending on healthcare under today’s conditions. We need to see the tradeoffs Congress plans to make and what they’ll mean for the millions of us who aren’t young and don’t have a spotless health history.

Related posts
The growing opposition to ACA “repeal and delay” (January 9, 2017)
The fate of the Affordable Care Act (December 7, 2016)
Study: US still lags behind on health care affordability and access (November 29, 2016)