ACA Isn’t Perfect, but Repealing It Could Bankrupt My Family

March 7, 2017

This post is part of a series looking at how the Affordable Care Act, also called Obamacare, has affected people with breast cancer. We would love to hear about your experience with the ACA/Obamacare – whether it’s good, bad or somewhere in between. Share your stories and your vision for health care with us, here.


In June I will be celebrating my 50th birthday. I have had times when I had no health insurance and I have had amazingly good health insurance (which I just thought was the norm). Today, I have no idea what the future holds.

The thought of the Affordable Care Act (ACA) being repealed scares me. Why? When I was first diagnosed with breast cancer in 2013 the ACA was just starting to affect insurance provided by employers. I had a plan in which the insurance company paid 90 percent of my medical expenses and I paid 10 percent, with no deductible (the amount of money you have to pay out-of-pocket each year before insurance starts paying your medical bills).

But during open enrollment, I initially made a choice to switch to a high-deductible (about $6,000) health savings account (HSA) policy with a high out-of-pocket maximum (the maximum amount an insurance policy can require you to pay) and lower monthly premiums. I had always been healthy, so I figured why not get a little more in my paycheck? But in the 11th hour, I changed my policy choice and went to a higher premium but a plan with a $750 deductible in which the insurance company paid 80 percent of my medical expenses and I paid 20 percent. 

Good thing, as I ended up with breast cancer: stage IIB. The financial impact was hard, but not as bad as it could have been. If I had stuck with the high deductible plan, I would have had to come up with $10,500 because of that plan’s high out-of-pocket maximum. 

Flash forward to July 2016 and a stage IV metastatic breast cancer diagnosis and now I am with a different employer and have a high deductible plan with an HSA. My deductible is $4,500. The out-of-pocket maximum is $9,000 a year for my family (but $4,500 as an individual). I am currently taking palbociclib (Ibrance), which thankfully Pfizer helps me pay for. It is a drug that without insurance I would not be able to afford. The ACA stopped insurers from placing a maximum on how much of your care they’ll pay for. That’s important to me, because without the ACA the Ibrance alone would bring me to a policy max rather quickly. Ibrance carries an average cost of about $10,000 for a 1-month supply.

The ACA made me feel safe 3 years ago. Pre-existing conditions were no longer a reason to deny coverage. Having a policy max was no longer a worry. (My radiation alone was billed at $75,000.) The fear of losing my job and having a pre-existing condition scares me. Especially a pre-existing condition such as a cancer that has no cure and will have me in some kind of treatment the rest of my life (and I plan on living a long, long time). The fear of reaching a max scares me. Not having insurance coverage, whether that insurance is good or bad, could bankrupt my family. 

My insurance since the ACA hasn't been as “good” as in the past, but I am grateful for the ability to have coverage. Most people complain how expensive health care is. I agree. It is expensive for employers to provide health insurance. Most people don't know the premiums that the employer pays, only the premiums we pay. Healthcare treatment shouldn't be limited by what a person can afford. Do I think there are some issues that need to be addressed with the ACA? Yes, nothing is perfect. Do I think the ACA should be repealed? NO! There needs to be a happy medium to ensure that people like me who live with chronic and terminal illness don't have the fear of not being insurable along with the stress of the actual disease.

Ilene Fogelman is 49 years old and lives in Weston, Florida, with her husband, Gary; 7-year-old daughter, Mackenzie; and a German shepherd named Lola. She works as an operations manager for a large insurance company. Ilene was diagnosed with early-stage breast cancer in 2013 and metastatic breast cancer in 2016.


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