For U.S. citizens, open enrollment for the health insurance marketplaces began this month. Under the Affordable Healthcare Act (ACA), people can sign up for coverage until Dec. 15. Before former President Barack Obama’s healthcare law passed in 2010, I was denied coverage because of my chronic diseases. This is why I passionately advocate for affordable and accessible healthcare.

In February 2003, I lost my graphic design job. I was able to remain insured under COBRA while I freelanced and looked for work. I was making a decent living as an independent contractor and considered doing it full time. But I would need individual health coverage.

Every insurance company I applied to denied me because of my pre-existing condition. My only option was to join Texas’ high-risk pool for uninsurable individuals. But when I tried, I was told there was a waiting list.

With my COBRA running out, I had no choice but to accept a position as an online banking assistant at a 50 percent pay cut just to get health insurance. With my advertising background, I eventually became the bank’s assistant vice president of marketing. But in November 2008, the bank failed and was closed by the Federal Deposit Insurance Corp. I stayed on as a federal contractor for almost a year as the bank transitioned assets to other financial institutions. By the end of 2009, I was freelancing and paying COBRA premiums once again. Shortly thereafter, the ACA became law.

I accepted a full-time teaching position with excellent health insurance a couple of months later, so I never had to enroll in the marketplace. But with the passing of the ACA, my worries about health insurance disappeared. I could never be denied coverage or charged higher premiums because of my chronic diseases. With the prohibition of lifetime and annual monetary benefits, I no longer had to worry about bankruptcy or losing coverage. Best of all, the ACA covered preventive care, including colonoscopies, at no cost.

After the 2016 election, my anxiety about health insurance returned. When the House of Representatives passed the American Health Care Act to repeal the ACA in March 2017, I couldn’t idly stand by. For the first time since being diagnosed with Crohn’s, I opened up about living with a chronic disease to demonstrate the need for the ACA. I chronicled every doctor’s appointment, all my lab work, pictures from Remicade (infliximab) infusions, and even posted bills and insurance claims on Facebook to show the physical, emotional, and financial costs of living with chronic disease.

I became more politically involved. I signed petitions. I attended rallies at the Texas State Capitol. I protested in 100-degree heat outside a town hall with Sen. Ted Cruz, who famously read the Dr. Seuss book “Green Eggs and Ham“ on the Senate floor to oppose the ACA. I wrote letters to my senators and representatives. I watched the historic moment when John McCain, battling brain cancer, returned to Washington to vote against the “skinny repeal” plan with a decisive thumbs-down. The next day, I marched down Austin’s Congress Avenue, celebrating the brief victory but continuing the fight.

In February 2018, Texas Attorney General Ken Paxton and 19 other states filed a lawsuit against the federal government challenging the law’s constitutionality. That December, Fort Worth U.S. District Judge Reed O’Connor ruled the ACA’s individual mandate was unconstitutional, invalidating the entire law.

The Crohn’s & Colitis Foundation (CCF) updated its policy statement on healthcare coverage and access in response to the lawsuit, promising to:

• “Ensure stability by accompanying any repeal of the ACA with a viable replacement;”
• “Maintain basic patient protections and prohibit insurer discrimination against chronic disease patients;”
• “Improve the quality of insurance plans;”
• “Ensure the affordability of insurance plans and that patients share in cost savings.”

In April, 17 patient-advocacy groups, including the CCF, filed an amicus curiae (“friend-of-the-court”) brief in the U.S. Court of Appeals for the Fifth Circuit in the case of Texas v. the United States of America. The court began hearing oral arguments in July, and a decision is expected soon. Depending on the ruling, the case could go before the Supreme Court in 2020.

Having advocacy groups and lobbyists fighting on behalf of IBD patients is imperative. However, patient advocacy starts with the patients. The best way for us to advocate is to contact elected officials, educate ourselves about the healthcare options candidates are proposing, and, most importantly, vote like our lives depend on it.

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Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.