In 1998, I graduated college, qualified for the New York City Marathon and was starting an M.D.-Ph.D program at the University of Pennsylvania. I should have been at the top of my game, but I felt terrible. I had abdominal pain that woke me up at night and was going to the bathroom nearly every hour, sometimes urinating what looked like pure blood. I had never been sick in this way before and I was too afraid to tell anyone how I felt.
During the first week of medical school, I nearly passed out while walking up a flight of stairs. Doctors at Penn acted swiftly and within weeks, I had a diagnosis: inflammatory bowel disease. I started treatment but a few months later, the medications stopped working. I also kept this to myself, determined to just get through my classes. But by winter, I was making 20-odd trips to the bathroom every day, and I could barely handle that.
On Jan. 3, I woke up completely blind in my left eye. It was the start of a horrific three months. In addition to what I learned was a blood clot causing my blindness, I also had numerous severe complications of my disease throughout my body. It was abundantly clear that I was critically ill; my family was called and the faculty banded around me in the hospital.
During that time, my medical school granted me a leave of absence. My parents and I were grateful for that. However, it turned out to be the start of another type of horrific experience: navigating insurance coverage before the Affordable Care Act (ACA) ― aka Obamacare.
Up until that point, I had been covered under my parents’ health insurance as a student. However, the minute I took a leave of absence, the insurance company insisted that I lost my student status. My medical bills were sent to my parents — while I was in the hospital on the verge of dying.
My medical school was appalled and swiftly reinstated my active-student status. However, the damage had been done: Now the insurance company insisted I had a preexisting disease and my care was suddenly substantially more expensive. Furthermore, I was told I had exceeded the maximum annual coverage for my insurance (the so-called “cap on care”). It was only February.
My parents attempted to hide all of this from me as best they could, but debt collectors called me while I was sick in bed and sent medical bills directly to me. The only thing that was worse than my unrelenting pain was the guilt I felt about what I was doing to my parents.
The minute I took a leave of absence, the insurance company insisted I lost my student status. My medical bills were sent to my parents — while I was in the hospital on the verge of dying.
When I left the hospital, I was blind in one eye, weighed less than 100 pounds and was learning to walk again. Still, I got a job as soon possible — at first as a telemarketer (a seated job, which I needed given my lack of strength). And, as soon as I was able, I started volunteering at my hometown hospital.
Why? Because I knew I needed to get back to medical school, mostly so I could save my parents from my accumulating medical debt. I still needed to be fed through an IV port in my chest, I was taking 60 pills every day, and I was getting daily lab work. This was not cheap.
My plan was to sign up for student health insurance at Penn. However, as I went over the policy, I noticed caps on coverage for care and prescriptions. I was devastated. Because of my preexisting condition, this policy was not an option for me. I needed to survive.
So, I made the painful decision to drop out of my Ph.D. program. This was a very personal blow ― the last time I had quit anything was the Girl Scouts when I was 7. But it was necessary; I needed good insurance and the only way I could see obtaining that was to finish my M.D. training as quickly as possible and start my medical residency, a low-paying job but one that comes with health insurance.
I still had another year of medical school and I received a scholarship to go to the Harvard T.H. Chan School of Public Health. I left Pennsylvania and headed to Massachusetts. The experience was eye opening in many ways, including the discovery that I love epidemiology and public health.
It was also the first I heard of an organization called Doctors for America (known as Doctors for Obama at the time), who were fiercely advocating for the ACA. As a patient, I felt grateful to see doctors fighting for my health care. As Rudolf Virchow once said, “Medicine is a social science. ... The physicians are the natural attorneys of the poor, and the social problems should be largely solved by them.” A physician’s oath extends beyond those who are lucky enough to see them in their office.
Unfortunately, as I started my program in Boston, I became sick again — experiencing the “relapsing” part of my incurable relapsing-remitting disease. I soon found myself at student health services, where a wonderful primary care doctor outlined a series of referrals and tests.
I sat there looking at the order slips, my brain trying to prioritize them into “urgent” versus “can wait until I find some more money.” Noting my hesitancy, the doctor asked if I had any questions.
“I’m so sorry — I know there are limits on coverage and I don’t think I can afford this many tests and appointments,” I said, embarrassed.
I was met with a confused look.
“There are no limits, and you just have to pay the co-pay,” the doctor told me.
For those who have never had to make the painful decision between paying your bills or rent and paying for your health care, it’s hard to describe the incredible sense of relief those words gave me. I had gotten my life back! I could focus on being a student and on applying for residency programs without worrying about how I would pay for the medical services I needed to stay alive. I didn’t have to ration my health care or make a call to ask a family member for money. What was responsible for this miracle? Massachusetts had implemented a version of the ACA before the ACA .
Today, thanks to the Affordable Care Act, which became law in 2010, my patients have protections whether they have obtained their insurance on the insurance exchange, through the government or through their employer. My patients do not have to worry about an annual cap on care, or a lifetime one either — a huge relief considering my patients have lifelong incurable diseases. My younger patients transitioning from school to the work force can get their first job without worrying about having a preexisting condition that would prevent them from securing affordable insurance. My female patients do not get charged more than my male patients just because of their sex. When I was pregnant, my maternity coverage was already covered by my insurance — I did not have to pay for additional coverage.
These — and many, many more ― protections could all be lost if the ACA is repealed. In fact, 20 million people may lose their health insurance if the Supreme Court strikes the law down later this month.
Too many people have had to make difficult decisions about whether they should quit school, give up a job or their home because they couldn’t afford to pay their bills and pay for medical care. They have been forced to choose between living their lives and living ― and that’s not OK. That should never be allowed.
I am living proof of how bad it was before the Affordable Care Act. The fact that I am still alive is because I was lucky: As someone in the medical profession, I had numerous doctors who went out of their way to help me “for free” and then I was able to move to another state where I was covered.
Before the passage of ACA, too many people faced medical bankruptcy, increased disability, even death. And even with it, close to 30 million people remain uninsured, and that number may now be much higher due to COVID-19 related layoffs. Too many people have had to make difficult decisions about whether they should quit school, give up a job or their home because they couldn’t afford to pay their bills and pay for medical care. They have been forced to choose between living their lives and living ― and that’s not OK. That should never be allowed.
The ACA isn’t perfect. But it is a crucial step toward remedying a broken health insurance system that only works for a select group of people. And right now it’s more important than ever that everyone is able to access affordable comprehensive health care as we continue to battle a deadly pandemic that has killed over 230,000 people, is making many more sick, and is causing unknown but increasingly alarming long-term effects for those who survive.
Every single one of us needs to stand up in support of improving and expanding our health care infrastructure, not weakening it. Health care should not be for the privileged nor should it be partisan. Providers need to be the voice reminding everyone to put our patients — the country’s population — over politics.
My immigrant parents were shocked that a nation as wealthy as ours does not recognize health care as a human right, and they’re right to be shocked. If the Supreme Court strikes down the ACA, I will be at risk again ― and I will not be alone. Millions of Americans could lose protections and that could literally be deadly for many of us. We must do whatever we can to ensure that this country continues to provide affordable health care for all people. None of us should have to depend on luck to stay alive.
Meenakshi Bewtra, M.D., M.P.H., Ph D is an assistant professor of medicine and epidemiology at the University of Pennsylvania and is on the board of directors for Doctors for America and the board of trustees for the Crohn’s and Colitis Foundation.