Affordable Care Act: A Personal Journey, Part I

For people with preexisting and chronic conditions, life before the Patient Protection and Affordable Care Act (ACA) was met with stress and unease. Will my insurance company drop me if I get too sick? If I take a new job, will their insurance providers extend coverage to me with a preexisting condition?

The issue should supersede politics. Unfortunately, like many other topics, healthcare has been weaponized.

Support affordable healthcare? You’re a socialist.

Desire a cost competitive market? You’re an alt-right extremest.

“The greatest asset of a nation is the health of its people.” - Dr. William Mayo

I was diagnosed with type I diabetes as a child, and was forced from my parents’ healthcare coverage when I graduated college.

As a young adult before ACA, I took jobs based primarily on health benefits. Thankfully, I’m lucky, and my family was in a position to assist me in paying for insulin, syriniges, and test strips. Even with decent health coverage, my wages couldn’t cover thousands of dollars in out-of-pocket costs. I would sweat each time a new insurance company branded envelope arrived, fearing the worst.

Countless other Americans are not as fortunate, and even today are forced to choose between shelter, food, or medicine.

Is the ACA perfect? Far from it.

Could it lead us to a cost competitive and patient focused healthcare infrastructure? I remain optimistic.

ACA Background

Enacted in March of 2010, the ACA is also known as “Obamacare” for some supporters and detractors. The law is comprised of two parts:

• The Patient Protection and Affordable Care Act

• Health Care and Education Reconciliation Act

The combined vision was to expand health coverage and options for all Americans, reform policies within the health market, and provide protections for those with preexisting conditions.

Three Primary Goals

According to healthcare.gov, there are three overarching goals of the program:

• Offer health insurance to more Americans through subsidies (tax credits). The program lowered costs for households with incomes between 100% and 400% of the federal poverty level

• Offer Medicaid to cover adults with income below 138% of the federal poverty line

• Prioritize innovation in healthcare delivery to reduce overall costs to patients and consumers

The program and its goals are relatively broad. Yes, the intent would hopefully improve care and possibly lower overall costs in a period of years. However, for me and many others within the chronic illness community, the coveted aspect was the newly formed rights and protections within the healthcare law itself.

Rights & Protections

• Requires insurance companies to cover people with pre-existing conditions, without additional charges

• Prohibits companies from canceling your coverage because you get sick

• Ends yearly and lifetime dollar limits for essential care

• Protects people from employer retaliation

• Protects the ability to choose a provider

• Requires further explanation of benefits and holds companies accountable for rate increases

• Affords free preventive care

But Wait, There’s More

In 2010, I assumed type I diabetes would be the most challenging aspect of my health journey. What I didn’t realize was just how pivotal the rights and protections would be for me. Beginning in 2019, I had a number of health challenges that continue today. In addition to having my colon completely removed, I’ve been diagnosed with:

• Colitis

• Sarcoidosis

• Heart disease (probable sarcoid relation)

• Liver disease (probable sarcoid relation)

• Chronic lung inflammation (probable sarcoid relation)

• Glaucoma

• Chronic Fatigue Syndrome and Fibromyalgia

I have lost my career, friends, and hobbies due to my health. While my insurance can’t terminate coverage, my wife and I have amassed well over a six figure debt to pay for treatments, care, travel, and durable medical goods related to my conditions.

And I’m lucky. There are endless stories of others that are not as fortunate.

Now What?

Like it or not, politics plays a role in our healthcare system. In the last few months, I have felt the same unease I did as a young adult. What will happen to our coverage? What if all or sections of the ACA are repealed? I take comfort knowing the ACA wasn't developed or implemented in one political cycle and I do not expect to wake up tomorrow without coverage. I’ve decided to focus subsequent posts about what the ACA means to me.

I cannot ignore both positive and negative impacts the ACA has had on our community. There are always opportunities to refine an approach to address a complex issue like healthcare, regardless of political affiliation.

We started EverGreen Adventures as a vehicle to provide connection and support for the chronic illness community, and this seems like a good opportunity to offer all citizens support, kindness, and a personal narrative about the ACA.

Care to join me?

Please send us an email if you have a story you would like to share about life within the ACA. Is there a topic you'd like us cover? Let us know!