“Two big questions — how many people it will cover and how much it will cost — are still unresolved: It will likely cover fewer people than the Affordable Care Act currently does, but we don’t know how many. And the Congressional Budget Office has not yet scored the legislation, so its price tag is unknown.”
The ongoing debate over Obamacare’s future means that millions of Americans aren't sure what will happen next for their health coverage.
We recently asked our readers: How has the Affordable Care Act impacted your life? And will you change your life if the ACA goes away? We heard from people who worried they would lose the coverage they gained through the new marketplaces, and from those who would be happy to return to the old system, where they got less expensive coverage. Many were anxious to know the future of specific programs, like the requirement that young adults be able to enroll in their parents’ coverage through age 26.
We received more than 350 responses to our recent callout for stories about the Affordable Care Act. The following roundup includes a sampling of those answers, edited for clarity and length.
Enrollees who experience career freedom
For many Americans, health care and career freedom are hard to separate. There were 1.4 million self-employed people who relied on the marketplaces for coverage in 2014, according to recent research from the Treasury Department. That works out to one-fifth of all marketplace enrollees being people who work for themselves. Under the Republican-proposed AHCA, similar marketplaces would still exist but enrollees would face higher costs on average.
Beth B.: My husband is self-employed; we always got health insurance through my federal job. The ACA allowed me to become a stay-at-home mom to our son, making all our lives immeasurably better. As our son started school I was able to work part-time and volunteer at school and in the community. If the ACA is repealed, I will have to find full-time employment that offers health insurance and stop volunteering; my husband and I are both in our 50s and have preexisting conditions.
Christy B.: The ACA has enabled my husband and I to start our own commercial real estate business and pursue our entrepreneurial aspirations. We have two children to care for as well, so accessible and affordable health insurance was a must and played a significant role in our decision to strike out on our own.
We have had to discuss if one of us should try and find a job where health insurance is provided. This isn't ideal, and neither of us wants to stop working in our business.
Lee F.: ACA kept us out of bankruptcy and enables us to run a small business. In March 2014, [my wife] was hit by an underinsured driver who had fallen asleep at the wheel: her passenger was killed instantly and my wife was severely wounded (broken leg and other injuries). It took her most of a year to recover. If we'd had only catastrophic insurance, we would probably have been looking at personal bankruptcy. Shortly before that, we had begun a business teaching taijiquan (tai chi) and working as adjuncts at a local university. We would be unable to continue that business or to continue living in our house without the ACA.
Enrollees who stay on their parents’ plan
One Obamacare provision allows young adults to stay on their parents’ health insurance plan until they turn 26. A 2015 Department of Health and Human Services report estimates that 5.5 million young adults gained coverage from 2010 to 2015. Under AHCA, this provision would remain in place.
Kate A.: When I was 23 and in grad school, I was in the process of being diagnosed for an autoimmune disease. During a routine ultrasound, we found a tumor on my ovary that turned out to be cancerous. Without the ability to stay on my parent's insurance until I was 26, I wouldn't have been diagnosed with the autoimmune disease that uncovered ovarian cancer. And now I live with two pre-existing conditions hanging over my head that the ACA ensures that I'm not penalized for having. It's amazing.
Without the ACA, I will live in constant fear of recurrence. I have health insurance through my employer, but I will worry about losing it every day. My life, at least in regards to how I take care of my body, will be upended if the ACA is repealed.
Mina S.: The ACA saved my life and my family from bankruptcy by allowing me to stay on my parents’ plan until the age of 26, through a cancer diagnosis. It allowed me to leave a terrible job that I was keeping solely for the health coverage. It bought me to my current job as an enrollment assister, which has led me back to school to pursue an MPH in health policy.
I'm preparing to leave my job as a contracted worker and take a job with benefits because I'm scared my preexisting condition will count against me and I won't be able to afford good coverage.
Enrollees with preexisting conditions find coverage
Since 2014, health insurance companies can’t refuse coverage to anyone or charge them more because of a health problem they had before the insurance coverage started. Recent research from the Department of Health and Human Services finds that the share of Americans with preexisting conditions who went without health insurance fell by 22 percent — a drop of 3.6 million people — between 2010 and 2014 when the provision was put into place.
AHCA offers formally similar protections for patients with preexisting conditions, but would lead to higher patient costs on average, with some particularly dire implications for the sickest Americans.
Carrie G.: My 4-year-old has cystic fibrosis. She was born into a world where we didn't have to worry about any of the terrible worries about coverage that used to come along with preexisting conditions and instead have been able to focus on giving her the best care possible. My daughter’s medicine will cost [about] 300 thousand dollars a year [once she turns 6 and is eligible to take Orkambi.] There's no amount of thriftiness that will allow us to cover that if she were to lose coverage due to her preexisting condition.
Annie M.: As an adult with serious asthma, I couldn't get health care for years, and would only go to the doctor for emergencies or to the ER when I had a serious asthma attack. Since coverage, I receive regular maintenance medication and monthly medical visits, which have [me] breathing better than I have in 27 years! I've been able to start my own small business, which supports my family, and allows me to continue as caregiver to my husband (who has multiple myeloma).
With no insurance I'd return to a life where I'd be afraid that every day might bring a catastrophic asthma situation. I'd avoid situations that might challenge me, and would need to find a job with benefits that would cover someone with my condition (not easy at 55) and would need to arrange regular care for my husband.
Enrollees who benefit from the striking of annual and lifetime limits on essential health benefits
The ACA prevents health insurance companies from putting annual and lifetime limits on essential health benefits, meaning they can’t set a dollar limit for your health care services while you’re on that plan. Health insurance companies do retain the ability to put dollar limits on services that aren’t essential benefits. The provision has saved thousands from bankruptcy.
These protections would remain in place under AHCA.
Sarah C.: I got sick in November of 2011 with a severe and disabling autoimmune disease with no known cure. Throughout that year and a half [it took to be correctly diagnosed], I went from being a vibrant 26-year-old nurse with a promising career to a weak, pale fragment of my former self. Because of the health law and the provision that insurance companies cannot exclude patients based on preexisting conditions, I was able to have access to the treatment that saved my life -- and sustains it to this day.
Katherine G.: I have two preexisting conditions: Lyme disease and CIDP [chronic inflammatory demyelinating polyneuropathy]. CIDP is a chronic degenerative autoimmune disease of the peripheral and autonomic nerves. Left untreated, it can result in loss of sensation, paralysis, and autonomic nerve dysfunction. Every two weeks, I receive infusions of a medication called IVIG. IVIG is exorbitantly expensive, and each infusion costs thousands of dollars. Fortunately, these treatments are covered under the plan I purchase through the individual marketplace.
If insurers are permitted to revert back to discriminatory pricing and benefit design, it is highly probable I won't be able to afford insurance outside of an employer-sponsored option. Insurers won't offer the robust comprehensive benefit packages they now are forced to offer under the ACA, and people with chronic conditions will be the first to suffer.
Joseph P.: I have hemophilia. I am 31, healthy, educated, employed, and incur between $600,000 and $800,000 every year in medical costs for the blood product I use to treat my condition. Prior to the ACA, when I was on my parents' health care plans, our family had to make a calculated decision each year: Would I be on my mom's plan this year instead of my dad's, or would one of my parents have to switch plans at open enrollment to avoid hitting a lifetime cap?
The ACA was a true blessing for me. I've been able to work at small nonprofits with very limited insurance options and have not had to worry about hitting a cap (not to mention exclusions for preexisting conditions). I'm getting married this year and am already scheming with my fiancée about how to maximize coverage if caps come back.
Enrollees who have seen costs skyrocket
Obamacare premiums initially came in low, which set up a rate hike last year. And in 2014, many insurers lost more money than made money, Sarah Kliff explains:
Insurance markets are complicated. But the story of Obamacare's 2016 premium increase is actually pretty simple: Many health plans — even those with decades of experience selling insurance — underestimated how sick health law enrollees would be.
The loss led companies to raise premiums to ensure that claims are covered. AHCA would likely result in lower premiums for younger, healthier, and more affluent people and precisely the opposite impact on older and poorer ones.
Chris K.: Premiums have increased from [about] $13,000/year for three people, with 1,000 deductible [in 2010], to [about] $27,000/year for two people, with $10,000 deductible. [If the ACA is taken away] I will purchase only the insurance that I need. Right now I am paying for neonatal, as well as pediatric vision, pediatric dental care, psychotherapy, all of which I do not need. My current plan is so expensive, and it only covers catastrophic issues, which does not meet my needs.
Dietrich E.: The ACA has utterly consumed what little disposable income I have. I had better coverage at a much lower price before; now I have to shell out thousands before this incredibly expensive package even kicks in. I'd dearly love to go back to the way things were.
Doug B.: Premiums have nearly tripled, deductible has increased by $1,000. I hope to be able to afford to see a physician again once ACA is repealed.
Jeff H.: I work for an ambulance service, and the ACA has cut what they pay the service for patients we transport. Since our revenue has decreased, my employer had to cut costs. Since we have less than 50 employees my employer eliminated health care. Now I have to buy it on the marketplace, and the cost has risen by 50 percent over [the] past three years. To afford health care, my wife and I now work opposite shifts so that we could eliminate day care and took our child out of private school. Anything would be better than what we have now.
Enrollees who dislike in-network options
Health insurance plans under Obamacare tend to have limited networks of providers, mainly as a way to lower premiums. This setup can be frustrating for those who need services outside of their network or who can no longer visit the provider of their choice.
Angel V.: I lost the ability to go to any of my doctors! I will have to drive almost an hour to see new oncologists to treat my cancer, as my oncologists are no longer in network. [My daughter] has to see a pediatric orthopedic doctor for her back, but there aren’t any in network within a 100-mile radius.
Ken P.: I used to be able to afford excellent health care for my family, and didn't worry about a serious medical emergency. Now the bronze plan is sending me to bankruptcy slowly; if I ever really need to use it, I go bankrupt immediately. The idea behind health insurance was to avoid all that. I would really like to have my old medical plan and my previous doctor back.