This post is dedicated to Patricia for giving me the courage to find the words to write about a topic that goes so much deeper than just policy.
The Affordable Care Act (ACA) aka Obamacare was passed into law on March 23, 2010. On April 24, 2009, I was diagnosed with Type 1 diabetes, an incurable autoimmune disease. I must inject myself with insulin to live. Without insulin, my body goes into shock, something referred to as diabetic ketoacidosis. My organs ultimately fail, and then I die.
I was diagnosed nearly a year before the Affordable Care Act became law. I was preparing to graduate from college and start a career in psychology. I didn’t know much about the health care system in this country or the health insurance I would need to access the supplies that would help me manage this new disease. Fortunately I had started a full-time job and was able to acquire employer-sponsored health insurance.
By the time the ACA was passed, I had decided to change careers and return to school. But leaving that full-time job meant leaving behind my employer-sponsored health insurance. It would be another three years before the ACA was fully implemented. In those three years, I learned firsthand the physical, mental and financial ramifications of not being able to access the treatment I needed to manage my chronic condition.
When the ACA came into full effect on January 1, 2014, it had completely saved my life. Here are five reasons why.
1. Continuous Coverage
Between April 2009 and January 2014, I went through six different health insurance plans. I also had to show proof of “continuous coverage” each time I switched health insurance. This meant acquiring a document of certification from my previous health insurance carrier and then sharing that document with my new health insurance carrier. Without that piece of paper, my health insurance had the right to deny me Type 1 diabetes coverage for an extended period (depending on the plan, this period could amount to a year). So, if I ever went a “day” without coverage, it was possible I couldn’t get my diabetes covered for another year. A small gap in coverage could disrupt life-saving treatment and completely deplete my financial resources and quality of life.
The ACA did away with the “continuous coverage” requirement.
2. Prescription Caps
When I went back to graduate school in 2010, I enrolled in student health insurance. As a requirement to enroll, I paid a year’s worth of premiums upfront (that’s what student loans are for, right?). At the time, I managed my diabetes with a flex-pen syringe and a glucometer (I pricked my fingers 8-10 times per day to check my blood sugar levels). I decided to invest in graduate school rather than a $6,000 insulin pump (mostly because my new student health insurance would not cover the monthly pump supplies).
The second time I attempted to refill my prescription for a 30-day supply of the flex-pen syringes, the pharmacy charged me $258.37. Although I had looked up the diabetes coverage under my new student health insurance plan, I had not seen the fine print written under the prescription benefit. There was a $1,000 cap on all prescription costs, meaning my health insurance would no longer cover prescriptions once I reached that cap.
It only took one prescription fill of diabetes supplies to cross that threshold. I needed insulin to live so I paid that $258.37 (fortunately I had access to a credit card) and started looking into other health insurance options. In the meantime, I spent $1,000 that month on diabetes supplies.
The ACA did away with lifetime and yearly dollar limits on coverage for essential health benefits, which includes prescription drugs.
3. Dependent Coverage
I was in my first year of graduate school when I learned my student health insurance would no longer cover my prescription drugs, including the insulin I needed to live. My mom had heard somewhere that I might be able to be covered under her own plan since I was under the age of 26. She inquired with her employer’s human resources department and learned that I was eligible so immediately enrolled me.
A few months later, I received my new health insurance card in the mail. I technically could have submitted some of that $1,000 prescription cost as a claim to my new health insurance carrier. I probably could have also gotten some of that pre-paid premium money I submitted to my student health insurance back.
But I felt so worn down and defeated after agonizing for weeks on how I was going to afford to live that I didn’t want to fight it anymore. I didn’t want to be denied again. I wanted to be done with the health care system and move on with my life. Thanks to my mom and the ACA, I could.
The ACA changed the rules for dependent coverage, allowing children to be covered under a parent’s plan until the age of 26.
4. Employee Benefits
When I turned 26, I was working full-time but without employer-sponsored benefits, including health insurance. I could apply for my employer’s health insurance program but without an official offer it would cost me $800 per month in premiums alone.
I was still a graduate school student so I re-enrolled in student health insurance. As a requirement to enroll, I paid six months’ worth of premiums upfront. There was no prescription cap this time. But there was a catch. I had to pay for every prescription drug out-of-pocket and then submit a claim for reimbursement. My test strips for checking my blood sugar 8-10 times per day cost $500 for a 90-day supply. While I was eventually reimbursed for all prescription costs, for six months I spent $400-$500 every time I went to the pharmacy to have a diabetes prescription refilled.
When those six months ended, I graduated and could no longer be covered under student health insurance. I was looking at those $800 monthly premiums again.
The ACA requires employers with 50 or more employees to provide health insurance coverage to all full-time (or full-time equivalent) employees.
5. Pre-Existing Condition(s)
Without health insurance, I wasn’t sure how I could afford the treatment I needed to live. So upon graduation in the summer of 2013, I decided to take a risk and apply for health insurance on the individual market. This was six months prior to the implementation of the ACA Marketplace.
A week later I received my denial letter. When I called to ask why I had been denied, they were straightforward about it: because I had Type 1 diabetes. They did refer me to the state’s application for a high-risk pool plan. This particular pool had been created for folks like me who couldn’t acquire coverage because of a pre-existing condition.
It was a huge application, and I remember having to submit all kinds of documentation to show that I didn’t have any other options — that I couldn’t access employer-sponsored insurance and that I had been denied coverage on the individual insurance market. I had to pay my first month’s $250 premium with my application. But I was accepted. I had a $500 deductible and amazing coverage.
The high-risk pool ended in January 2014 with the implementation of the ACA and the opening of the ACA Marketplace. But at that point I had found a new job with benefits. I could move on.
The ACA requires health insurance plans to cover people with pre-existing health conditions, including Type 1 diabetes, without charging those individuals higher premiums.
How These Benefits Saved My Life
Thanks to new ACA requirements and rule changes such as the dependent coverage clause, I was able to access life-saving drugs and devices prior to the full implementation of the ACA. In the span of four months during my graduate school tenure, I experienced two life-threatening seizures. I had been managing my diabetes with the flex-pen syringe and glucometer.
In September 2011, I experienced that first seizure as a result of hypoglycemia aka low blood sugar. I had administered too much insulin with my flex-pen syringe for that morning’s meal, and before I could fully treat the symptoms of low blood sugar, I blacked out and seized. A minute later I woke to an array of worried faces. I was in an airport bathroom. I couldn’t remember my name, but I remembered that I had Type 1 diabetes.
After the seizure, my endocrinologist encouraged me to look into an insulin pump and a continuous glucose monitoring (CGM) system. Even with health insurance, these supplies seemed unaffordable. I thought if I just paid more attention to the warning signs and gave myself less insulin that I would be okay.
Four months after that first seizure, I was at the airport again. I had just passed through the metal detector (back before the full body scanners) and felt the shakiness and weakness that comes with low blood sugar. I grabbed my bag from the conveyer belt and searched frantically for my glucose tablets. But then I blacked out and seized. I woke up to an array of worried faces.
I decided then to invest in that insulin pump. Some of you know my pump as Gizmo. Because I was covered under my mom’s insurance plan since I was 24 and under the age of 26, I only paid $1,500 for the pump as opposed to the $6,000 it would have cost me without health insurance. A year later because I had acquired employer-sponsored insurance, I invested in a continuous glucose monitoring (CGM) system, which only cost me $300 as opposed to the $1,000-$2,000 it would have cost me without insurance. Some of you know my CGM as Cosmo.
Last year after my insulin pump warranty ended, I decided to upgrade to an Omnipod system. Some of you know my pod as Evie. This is essentially a wireless insulin pump that is waterproof and better fits with my active lifestyle. All of these systems have helped me manage my disease to the best of my ability. Since investing in these devices, I have not had a seizure as a result of low blood sugar. I have not been admitted to the hospital due to complications from diabetes.
I have the ACA to thank for that.
We Are Worth It
I was fortunate in that I only had to endure the diagnosis and management of a chronic condition for three years prior to the full implementation of the ACA. But those three years were not easy. And I still have anxiety just thinking back to the many emotional and physical battles I had to endure and the many loopholes I had to discover to survive.
After a while, I started to wonder if my life was worth it. I only seemed to be a burden on society’s resources. No one wanted to cover me so I could access the supplies I needed to live. I cost too much. And no matter how hard I worked to manage my diabetes and maintain my health, I would probably always be expensive to cover.
So what was the point? If it was going to be a constant uphill battle just to acquire the medication I needed to live and maintain a good quality of life, was it really worth it?
Of the ACA requirements I mentioned, ALL are on the chopping block in the GOP’s efforts to repeal and replace Obamacare:
- The ACA did away with the “continuous coverage” requirement.
- The ACA did away with lifetime and yearly dollar limits on coverage for essential health benefits, which includes prescription drugs.
- The ACA changed the rules for dependent coverage, allowing children to be covered under a parent’s plan until the age of 26.
- The ACA requires employers with 50 or more employees to provide health insurance coverage to all full-time (or full-time equivalent) employees.
- The ACA requires health insurance plans to cover people with pre-existing health conditions, including Type 1 diabetes, without charging those individuals higher premiums.
It’s the pre-existing condition one that scares me the most. It’s partly why I couldn’t sleep the week after Trump was elected. What would happen to the ACA? What would happen to my coverage protections? Would I be able to survive in this post-ACA climate? Would I be able to afford to live?
These are still questions that haunt me. I try not to dwell too much on the anxiety. I’ve had to sweep too many panic attacks under the rug. And I am just one American with one pre-existing condition. What about the rest of America? More than half of Americans report having a pre-existing condition or knowing someone in their household who does. Current repeal efforts are looking to eliminate protections for 133 million Americans who have a pre-existing condition.
Are we worth it?
The ACA gave me hope. It gave me coverage and access to life-saving drugs and devices. But more than anything, it gave me my spirit back.
With the ACA, I feel worth it.