My name is Susan Spann. I am 38 years old now. My life started as a pre-existing condition. If not for my mom’s service in the military, I would have likely been uninsured most of my life. But when I aged out of ChampVA coverage under her in college, it was the craziest scariest expensive time of my life so far not counting the years 2003-2014.
In 2003, Blue Cross Blue Shield opened what they called a special open enrollment plan open to anyone not employed and insured through an employer. By the time that plan ended in 2014, the premiums for just me were $298 per month with an out of pocket that was around $10,000 per year. There was never any way that I, as an individual, would have ever been able to meet such an outrageous out of pocket unless ALL of my expenses were calculated.
The problem with that plan? It was never insurance. It did not cover preventive care services. It was essentially only a catastrophic plan. And while it covered some surgeries I ended up needing, it was never enough. Because preventive care was not covered, I had to use the ER a lot. And I couldn’t afford that. Which meant I had to apply for charity care a lot. Which drove up the costs for the insured.
I voted for John McCain in 2008. Why? Because he proposed doing the ACA. I was disappointed when Mr. Obama won that election, but ecstatic when he picked up the ACA. With its passage, the first effects were felt: no more worrying about hitting a lifetime cap. I should have never worried about that, but at the age of 32 when it passed in 2010, face it, by that point, I had a growing list of what are now considered PECs. With its passage, I no longer had to worry that if I got sick again the next day (immune deficiencies do that) that I would be dropped in the middle of treatment or care. And with its passage, I looked forward to the next big step: I was going to get proper insurance for once because I would not be denied like I would have been had I applied for the individual plan BCBS rolled out in 2008. I was tired of being that underinsured person who needed charity care to pick up the majority of my tab or faced bankruptcy just for needing care. Thankfully, this year, my credit history should be wiped clean of that lingering medical debt that could never be collected because of consumer protections that prohibited debt collection agencies from doing some crazy illegal stuff.
Fast forward to today. We have since had the following issues arise:
- CVID is my new diagnosis. And after a recent hospitalization for IV antibiotics due to numerous drug allergies because I had a triple infection, my doctor has now built the case for me to receive IVIG. This is answered prayer because with this treatment on the horizon, I might get well enough to return to the workforce part time.
- Mast cell disease: suspect probable smoldering systemic mastocytosis. Treatment at present with cromolyn oral ($1000+ per month without insurance and I only have $735 in resources and my mom only has just enough for the house payment and utilities, barely enough for medicine for me from her veteran’s benefits).
- Autism diagnosis finally.
- Congenital rubella syndrome.
- Agent orange baby - first generation. Who knows what that entails exactly. This goes to the VA.
- Ulcerative colitis and diverticulosis with diverticulitis flares and colon perforation (the chief reason for the recent hospitalization.
- Hypothyroidism, feminine issues that may require surgery, mitral valve prolapse syndrome, ADHD, colon polyps, etc.
At my age, I should not have to worry about losing access to healthcare I need that can restore some quality of life for me, that can restore the hope that I will get to return to the workforce again even if it is just part time.
Having real insurance for the first time in my life has meant less out of pocket expenditures which has allowed us to do something I would have never been able to do before and that is look into moving again as an adult to a state where the air quality is such that my whole entire immune system resets and my allergies are less aggravated. Having real insurance for the first time in my life has meant that we can pursue proper diagnosis with an out of state specialist. And it has meant only having charity care assigned at ONE facility for expenses not covered by both BCBS and Medicaid. But we have been able to utilize more primary care and clinics than hospitals. Since having proper insurance afforded to me on the individual market outside of the exchange through BCBS, I have only ever needed two hospital level visits outside of a colonoscopy/endoscopy and that has been for an out patient surgery and the most recent triple infection treatment.
Republicans, to the extent that I have received any respectful communication from any of you on other matters, you seem like you could be reasonable people. So prove to me that you are in fact reasonable and work with us here. We need assurance that we will not lose insurance coverage during the time of which our country utilizes insurance to have proper access to healthcare. The most obvious solution to our problems in this country is not a repeal of the ACA. It is universal care. And I think our country could afford a hybrid version of that where we all pay maybe $50 into the pool and all get care we need. Some will need more while others will need less, but no one should have to worry about losing access to care or going bankrupt for needing care. You claim to be pro-life. So why would you take away access to care for anyone needing it? I want our country to have more negotiation power to bring down the costs of medicines (Auvi-Q and epipen have literally committed the price gouge and the Auvi-Q gouge is of epic proportions from $300 to $4500 charged to insurance companies!). I want our country to have more negotiation power to bring down the costs of healthcare itself. And I want our citizens to have more power between them and their doctors to decide what’s best for their care. If we had universal care, I would not have needed to wait until a hospital visit occurred to get IVIG treatment. My doctors would have been able to try it out with me sooner to see if it would work so that we would have a definitive game plan now and I would be back in the workforce already. But insurance said no. Because I am too borderline and it’s a subclass deficiency with frequent infections.
Did you know that off the exchange, we have a minimum of 180 million people who benefit from protections provided by the ACA? Counting those on the exchanges, we have 200 million people (all of Clinton’s voters and all of Trump’s voters plus even those who did not vote at all) who benefit from the ACA. Many don’t realize it because they have never bothered to look at the benefits they do have. They just parrot what they have heard from fake news. But that is a substantial number of people that would be hurt if you repeal the ACA right now and don’t replace it with something equally as good or better.
What provisions do we get?
- Lab tests
- Diagnostic imaging services
- Women’s care and men’s care equally
- Birth control is covered (it doesn’t need to be free, it just needs to be covered)
- Preventive care services including vaccinations
And I even have dental insurance now as well (I was told I did not qualify before the ACA).
So please slow your rollers on the ACA ideology your party has adopted and take a good long look at my picture. I was on track to become a college professor before my health sidelined me. Now I have aspirations to become the first known autistic president of the country, but will settle for working for Disney or for a library if they will accept me while working on a book on the side.