Without Obamacare, I Will Get Sicker, Faster, Until I Die
January 16, 2017, 5:10pm


ROANOKE, Va. — On March 18, 1991, my life changed. I was an 18-year-old student at a community college in southwestern Virginia, working out at the gym, when I got a headache. A thunderous pain shot through my head and I thought, “I am going to die now.”

One month later, I woke up. Two brain surgeries lasting a total of 22 hours repaired the ruptured blood vessels that had caused a massive stroke. Luckily, I had health insurance through my part-time job. After years of rehabilitation, I fought my way back into college — earning a master’s degree — and into the workplace.

I became a homeowner, married and got a dog. For many years, I worked as a social worker — my way of giving back to the world and honoring the doctors, therapists, nurses and social workers who had helped me reclaim my life.

But a little more than a year ago, something changed. I had trouble paying attention; my short-term memory worsened. I went to see a neurologist who noticed a slight tremor in one of my fingers. His words changed my life for a second time: “I think you have Parkinson’s disease.” I was 44.

Although I continued to work full time, I struggled more and more with tremors and slowness. My memory and emotional ability to cope with my diagnosis worsened. I was calling my wife from work in tears.

My doctors told me that I had to leave my job. I was devastated — I did not know what my value as a person would be if I could not help others.

I was also devastated financially. Although I was approved for Social Security disability benefits within a month, the cost to keep my employee health benefits under Cobra was $1,300 per month. This premium would have consumed my disability benefit; add in co-payments and deductibles and we would be quickly headed toward bankruptcy and losing our home.

Without Obamacare, I Will Get Sicker, Faster, Until I Die
Lawmakers met at the Capitol in Washington this week to being the process of repealing the Affordable Care Act. Shawn Thew/European Pressphoto Agency 

Instead, over the summer, I was able to get a Gold Aetna plan for $450 per month through the Obamacare exchange in Virginia. It was still expensive — because of my wife’s income, I did not qualify for a subsidy — but my medical expenses became manageable. The plan covered more benefits than my previous employer plan; for example, my co-payments for counseling were only $10.

Aetna dropped most of its Obamacare plans this year, including mine, citing financial losses. But Obamacare will still work for me. I just enrolled in a Silver OptimaFit plan for $421 per month. I can see all the same doctors and take all the same medications, but will need to pay a little more for counseling.

My medications for symptoms related to Parkinson’s disease and dementia cost about $900 per month, but under my Obamacare coverage, I pay only $130 per month.

Without these medications, and therapy, I would lose the capacity to function cognitively and emotionally. Patients like me are at a high risk for suicide because of depression stemming from cognitive decline. If I stopped receiving the care I needed, I would most likely end up living in a hospital or nursing home to keep me safe, which would cost the government much more money.

My prognosis is not good, but Obamacare gets me the treatment I need so that I can be myself as long as possible. Without this insurance, my illness would progress more rapidly, until I died.

Early on Thursday morning, the Senate voted to begin the process of repealing Obamacare. On Friday, the House followed suit. A repeal of Obamacare — without even knowing what the replacement would be — obviously makes me very scared. I used to be the one helping people as a social worker. Now I’m the one who needs help.

It’s not too late for Republicans in Congress to change their minds and see reason. It will be at least a few weeks before Congress formally votes on the question of repeal.

If one of the last meaningful things I can do is help even one person understand how important it is for millions of people to keep their Obamacare, then my illness will have served its purpose. For that I will be grateful.