Hannah Facknitz gave these comments at the vigil for healthcare reform in front of the courthouse on June 28, 2017. The event was hosted by Brent Finnegan who is running for the House of Delegates in the 26th District. You can learn more about the vigil and hear Hannah and Brent speak to WHSV here.
My name is Hannah Facknitz and I live with a severe form of Systemic Lupus Erythematosus, more commonly referred to as lupus, an autoimmune disease that causes my body to attack itself killing healthy tissues ranging from my skin and hair, to my kidneys, lungs, heart, and brain. I was first diagnosed four years ago and managed quite well, until six months later when my physicians and I discovered the disease was in my kidneys. In less than a month I lost 20% of my kidneys. Left untreated, I would have been on dialysis within five months. I started aggressive immune-suppression therapy which rendered me severely ill, forcing me to drop out of college eight weeks before graduating. I lost all independence, became bed ridden, and suffered from severe pain.
Today, however, my lupus is in remission. I’ve finally begun the work of completing my degree, and am making plans to attend graduate school in history. I explain this because I want to impress on you exactly how far I’ve come thanks to hard work, the love and support of those around me, and most importantly, the Affordable Care Act. Because of the ACA, I was able to stay on my father’s health insurance he receives as a professor at JMU until this year when I turned 26. For those years while I fought for remission, I did not have to wonder how my family could afford my treatment. When my rheumatologist recommended a drug that costs $22,000 a month, I did not have to hesitate. That drug has radically changed my life. I have with me all of this year’s insurance receipts. Each piece of paper in this folder represents at least one, sometimes as many as four medical encounters I’ve had in the past 12 months, all paid for by my insurance company. Without these treatments and visits and medications, I would never have survived to speak to you today. The Affordable Care Act saved my life, but it also allows me to live my life. The ACA means that I get to live out my dreams. I get to consider going to graduate school and becoming a professor, but those dreams require health insurance. Without Obamacare, I would have to choose between permanent disability, never making more than $12,500 a year in order to hold on to health insurance, or death, because a life without insurance is most certainly a death sentence. With Obamacare, I have the flexibility to pursue a graduate degree, seek gainful employment, and become a taxable citizen. Without it, I would remain permanently dependent on public assistance.
As I mentioned, however, I turned 26 in April, meaning I am no longer an eligible dependent for my father’s health insurance. This means I must find my own health insurance. I’ve been turned down for Social Security Disability Insurance twice now, and the current wait time for my final appeal is 18 months. If I were to want to be on Medicaid, I must be on SSDI for at least one year before I can even apply, meaning I am facing down the possibility of at least two years uninsured. I lost 20% of my kidneys in one month. Where will I be after two years? My medications, treatments, and medical encounters cost at least $30,000 a month, meaning after two years of those costs, I would incur $720,000 in debt, an impossible number to afford. I would have to forgo most, if not all of my therapies that keep me alive simply because that money does not exist.
My only option now is the insurance marketplace, where I have found a reasonable plan, if slightly more expensive than my current, but we’re talking about $10,000 a year, not the $360,000 it would cost if I were uninsured.
The Republican plan would be a death sentence. I would have no access to any affordable plan, marketplace or no. I would again be branded as having a “preexisting condition,” rendering me ineligible for most, if not all, private insurance plans under Trumpcare.
It is clear to me that the current Republican leadership sees illness and disability as a moral failing. Our Vice President said this new plan was based in part on “personal responsibility,” as if I have somehow done something to deserve this lot in life. The health care bill Mitch McConnell has put forth is not about rising premiums, but about paying wealthy people for being wealthy and healthy people for being healthy. It is based in a deep-seated idea that sick and disabled Americans have nothing to offer. That we exist as only burdens to the state and the able-bodied. The fact that under this bill 216,900 people will die by 2026 holds no sway with our current leadership. What this fight comes down to is whether or not you value the lives of your fellow disabled, sick, or poor Americans. Do you believe we are equal citizens? Do you believe we have the same rights to life, liberty, and the pursuit of happiness that our wealthy, well, or able-bodied fellow Americans do?
Then I need you to call your representatives at every level of governance, even if they are opposed to the current legislation. Ask them to fight this abomination that seeks second-class citizenship for a huge swath of Americans. Speak out wherever you can. Engage people in dialogue. And reach out to your friends who will be directly affected by this bill. Reassure them that you are committed to fighting for their personhood and right to live, because that is what is on the line. We will be poorer and sicker, and will die in the hundreds of thousands under this plan. We need you to exercise your privilege as able-bodied people as allies. We cannot win without you.
Contact information for your representatives can be found online using this guide:
 The folder referenced here was about an inch and a half thick with paper.
Image credit: Stephen Swofford of the Daily News Record. Published on 6/29/17.