For Glamour, by Maggie Mallon.
For six years Republicans in Congress have tried to repeal the Affordable Care Act (ACA), the law more commonly known as Obamacare. With the party now in control of the House, Senate, and White House, what was once a political rallying cry has become a real possibility. Already Congress has taken preliminary measures to roll back the ACA, and one of Donald Trump’s first acts as President was to loosen the regulations of the law and give government agencies the option not to enforce them.
Though this might bode well for fulfilling campaign promises, it poses one huge problem: 30 million people could be without health insurance if the ACA is repealed. After being signed into effect in 2010, the law, though imperfect, provides coverage and protection for millions of Americans that they didn’t have before. It allows young adults to stay insured through their parents’ plans until they are 26. It prohibits insurance companies from denying coverage to people with pre-existing conditions. It abolished annual and lifetime limits that insurers had previously used to cease coverage once a patient’s care hit a certain threshold. It expanded Medicaid and gives millions the option to purchase an affordable plan through the ACA marketplace.
For women in particular, the ACA has made a tremendous impact on the care and coverage they receive. Aside from offering no-copay contraception, the ACA made affordable insurance and better preventive care available to millions of women — particularly for those of low income. Women no longer faced higher premiums than men — as they had before the ACA — and as a result, the uninsured rate dropped and more women sought annual checkups and preventive care. If it’s repealed without a replacement plan, or if the proposed replacement returns to a model that puts insurance companies ahead of consumers, millions of women and men will be left in a lurch.
As Congress and the new President continue to move forward in their efforts to strike down the Affordable Care Act, Glamour spoke with several young women who owe their lives to the coverage that the law provided. Here, three women share their stories. As told to Maggie Mallon.
I was born prematurely, and my doctors weren’t really sure why. From early on, I had a lot of health problems. When I was 10 months old, I was diagnosed with congenital toxoplasmosis, a parasitic infection that a mother can pass to her unborn child without even knowing she has the parasite. It’s a rare disease, and few people have heard about it. Not long after my diagnosis, I had my first brain surgery to place a shunt that would help drain fluids. Luckily, my parents were able to insure me through their business before it became clear that this would be a chronic illness. If that had not been the case, I’m not sure where I would be.
I was pretty healthy until I was about 14 and started having problems related to the toxo. I began losing vision in my left eye and eventually lost almost all of it. When I was 16, I had my first shunt failure. I had multiple eye surgeries. I also somehow managed to pick up E.coli — to this day, I still don’t know how. Because of my surgeries and the E.coli,I was put on Daraprim for over a year and a half. At the time, this medication was about $13 per pill; today it costs $750 per pill (we can thank Martin Shkreli for this price hike).
Because I was having so many surgeries, my parents soon sat me down to tell me a hard truth: Insurance plans came with both annual and lifetime limits for the coverage they offered. If I kept having surgeries, it was quite possible that I would hit those limits and we would have to figure out how to pay for my care. I went through most of my life not really thinking about the consequences of having a chronic illness. I didn’t really understand what pre-existing conditions or lifetime and annual limits meant. I didn’t know that I would have to find a new health plan once I turned 22. I come from a working-class family. They own a small manufacturing company. Paying my premium every month was an enormous financial burden—and it was just for me. I began thinking about what it would mean if I couldn’t have health insurance. It was frightening.
After I graduated from high school, I went to the University of Minnesota. I did grassroots organizing around economic and social justice issues—particularly around access to affordable health care. At that same time, I had two more brain surgeries and a handful of eye surgeries. I started to testify in the state legislature about why Obamacare was going to keep me out of a high-risk pool and potentially save my life. Because the surgeries I had were so costly, it was truly a miracle that my parents were always able to keep me insured and make sure I had all my medical bills paid. For so many people, particularly for folks in the working class and middle class, losing your home or car to health bills is a very real thing.
Because of the ACA, and the sheer luck that I hadn’t hit my lifetime limits, I was able to stay on my parents’ plan till I turned 26. They’re on Medicare now, but I have insurance through my employer. If Congress repeals the ACA, it will only mean bad things for my care and coverage. My shunt can fail at any time—just like it did last October. It comes out of nowhere: I’ll be fine and then, all of a sudden, I’ll be really sick. I won’t know where I am or who I am. I’ll need emergency surgery. I could lose my other eye within a matter of 24 hours. The only medicine that treats my disease is $750 a pill. I couldn’t afford that without health insurance. If insurance companies go back to refusing to cover certain medications, treatments, or pre-existing conditions—or if they return to high-risk pools—I’ll be out of luck. This doesn’t work for me. It doesn’t work for anyonewith a congenital or serious chronic illness.
Not everyone is as privileged as I am to have employer-based coverage. If Congress repeals the ACA, we’re looking at a future in which millions of people are going to be very sick. But the loss of the ACA would be devastating for all Americans, beyond just the sickest. I can’t say in all honesty that the ACA is working in the way it needs to for everyone, but it has brought us so far forward. I’m not confident that anything Republicans put forth will provide the same quality of care to the same number of people. I would love to be wrong, but I won’t keep my fingers crossed.
—Abby S., 25, Washington, D.C.
I was diagnosed with Hodgkin’s lymphoma about three weeks after graduating from college. I was given nine rounds of chemotherapy, but they didn’t work. Usually, that treatment does the trick, so my doctors switched me to another treatment. I had a stem cell transplant, because usually, without that, the cancer has a 90 percent chance of returning. My transplant decreased that to about 40 percent. I had several surgeries and 16 more rounds of another chemo. I then was given a preventive chemo treatment to further decrease the chances of my cancer coming back. Because my first treatment didn’t work, my doctors gave me this more aggressive one to knock the cancer out. With three of those, I was in remission.
For my stem cell transplant alone, I was in the hospital for about 20 days and racked up a bill of almost $1 million. Because of the Affordable Care Act, I was able to stay covered under my mom’s work insurance, even though I had graduated from college. We were still paying for my treatments, but they were much less than they would’ve been without insurance. Actually, I would’ve died without the ACA. No one can really afford multimillion-dollar cancer treatments.
Even though I’m now in remission and no longer being treated, I still have a pre-existing condition, and I’m still a cancer patient. I go to my oncologist every few months to make sure things are OK. If the ACA is repealed, for one, I still don’t have my own insurance. I just started working full-time about two weeks ago, and my benefits wouldn’t kick in until 90 days after my start date. If I wanted to get off my parents’ insurance, I would have to wait 90 days. I have a scan coming up in March, so I wouldn’t even make it to this start date without it affecting my health care. On top of that, insurance companies could deny my coverage because I have a pre-existing condition. This is scary—I need coverage, and I know I’m not the only one. A scan alone can be $5,000 or $6,000, or even more than that.
It’s not like cancer is a self-inflicted medical condition. It’s a misfortune that can happen to anyone at random. No one asks to be a cancer patient. It’s unfortunate that the government is attempting to repeal something that has helped so many people. We know the ACA isn’t perfect, but it should be improved, not repealed without a replacement.
—Chinelo O., 24, Texas
I was 25 when I was a graduate student at the University of Missouri and had health insurance through the university. Following graduation, I planned to join the Peace Corps. The Peace Corps didn’t start for another nine months, so I had time to kill in between. I planned on taking a temporary job to pay the bills, but that job did not provide health insurance. My parents foresaw this gap in coverage and told me there was a new law — the Affordable Care Act — that would allow me to be on their insurance until I was 26. They asked if I wanted to join, and I said sure. I was young — and healthy — and hadn’t thought about my insurance ending. Then, a few weeks after graduation, when my insurance would have ended, I received a cancer diagnosis. It was an aggressive bone cancer mostly found in kids and teenagers. I was a little old to have it, so it was pretty shocking.
I had five surgeries and a year of mostly in-patient chemotherapy. My insurance basically saved my family from bankruptcy. I could be dead if it weren’t for access to health care during that time. I got a lot out of the ACA, and it didn’t cap my benefits. There are out-of-pocket limits for how much I could be charged, so most of my medical care was covered. Without the ACA, my family and I would have been taking out loans and potentially filing for bankruptcy.
By the time my treatment finished, the exchange hadn’t rolled out. I had to find a job — fast — so that when the coverage period under my parents’ plan ended, I could pick up a new plan to cover my ongoing health care and my pre-existing condition. I took a job that had benefits, and to be honest, I wasn’t happy there. When the exchange opened and stabilized, I was able to leave this job, take a contracted job as an ACA-enrollment assistant, and use the exchange to purchase my own plan. I knew the ACA pretty well, and because of what it had done for me, I wanted I wanted to give back.
I work with a lot of Trump supporters who are on the health insurance marketplace or expanded Medicaid. They ask me what’s going to happen, and I have to tell them that no one really knows. There’s no plan yet. A lot of them are confident that Mr. Trump is going to come up with something much better, but it’s really hard for me to educate them without being political. The facts of how the system works are the facts. But when you’re just listening to what politicians are promising you, it makes health insurance, health coverage, and health care access into a political monster.
Yes, there are problems with the ACA. No one is claiming that there aren’t. But they’re fixable problems. Repealing it is like tearing down the house before you’ve even built it. Everything they’re planning on doing — bringing back pre-existing conditions, time caps, health savings accounts, not mandating coverage — goes right back to where we were before the ACA. We implemented the ACA because there was a problem with that. More people are going to be cognizant of these issues because so many people have gotten a taste of what it’s like to have access to health care. It’s going to be really difficult for Congress to take it away.
—Mina S., 31, West Virginia
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