A decade after my mother, Dawn Lafferty Hochsprung, was killed trying to protect elementary school students in the Sandy Hook School mass shooting, I’m in the midst of another crisis caused by bad policy: crowdfunding for pay for my cancer treatment.
In late March, I was diagnosed with stage II lymphoma, a primary orbital tumor, along with significantly sized precancerous masses in two of my lymph nodes. Until my diagnosis, I wouldn’t have understood what most of that last sentence meant. Now I know. It means that without aggressive treatment, I may not live to see my 38th birthday.
This diagnosis came as a shock to me. I had been aware of a small spot behind my left eye since 2014, but for nine years I had been going to the eye doctor regularly to have the spot measured. It was always the same. We thought it was scar tissue. That changed last December. Fourteen weeks later, after many tests, I was diagnosed with cancer.
My family has already experienced the trauma of my mother being killed in a mass shooting. I was afraid to tell my five brothers that I too might die soon. I just couldn’t make the phone calls, I ended up texting them, because the words were just too hard to pronounce.
Before I knew it, I was on the phone with doctors, pharmacies, insurance companies, and health advocates trying to figure out what would be covered by insurance and what would not. After many appeals and talks with medical review boards, my healthcare team told me their conservative estimate was $60,000 out of pocket but, more realistically, $100,000 would get me away with little or no medical debt. .
Hearing those numbers made my head spin.
I thought I had great health insurance. But I was told that my chemotherapy is not covered by insurance at all.
This is because its main function is to treat stage zero (precancerous) masses. Even though I’ve been told it’s not Self these masses turn into cancer, it is When and how quickly chemo pills that could save my life aren’t covered by insurance.
I expect to be on a treatment plan with radioactive iodine and chemotherapy for at least the next 12 months. And the pills cost around $8,000 per round. This does not include dues, deductibles and non-medical expenses my family is facing. I’m on a low-iodine diet, which has skyrocketed my grocery bill. I’m forced to use biohazard precautions (one-time use for toothbrushes, laundry, cooking utensils, and more) because of the nuclear medicine that’s in my body.
I’ve spent the last decade fighting for tougher gun laws and working to hold the NRA and its allies accountable. That job is all I wanted to do after my mom was killed, and she pays the bills, but it doesn’t come close to what I need to afford my medical bills.
Some may think I don’t need to work after seeing the headlines of the more than $1 billion Alex Jones was ordered to pay the families of Sandy Hook for defaming them with despicable lies. But I haven’t seen a penny of that money and probably won’t for years, if ever.
So despite having built a public profile through a decade of advocacy, my options for paying for cancer treatment are slim.
I have no problem asking people to donate to gun violence prevention work, but it feels different to ask for money for yourself. To afford cancer treatment, I did what many Americans in my position do. I started a GoFundMe to crowdsource my lifesaving medical care.
This is the sad reality of health care in America, where even those lucky enough to have good coverage are stuck with out-of-network or over-the-counter drugs, resulting in medical bills that will take a lifetime to pay off. It is a disgusting fact that insurance companies, not doctors, decide what counts as life-saving care.
Luckily for me, I’m getting closer to my crowdfunding goal. But I know that if I survive without a mountain of debt, it will only be thanks to my mother, Dawn Lafferty Hochsprung. My mother died a hero. She was just over five feet tall, yet when a gunman entered Sandy Hook Elementary, where he was principal, she charged him. Now, a decade after his death, she could save another life mine. The vast majority of donations I’ve received come from people who want to honor her.
I never thought there would be any good from my mother’s murder. But the simple fact is, if she hadn’t been killed, I wouldn’t have the money to survive.
But your mother wouldn’t have to be killed in a high-profile, horrific mass shooting to be able to raise money to save your life.
I now live at the crossroads of two uniquely American crises: A decade ago, my life was forever changed by gun violence. Now, it’s been changed again by a health care system that allows insurance companies to put shareholders ahead of my survival. We all deserve better, on both fronts.
Here is the link to Ericas GoFundMewhich includes medical and treatment updates.
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