My family didn’t know if we had much to be thankful for on Thanksgiving of 2011.
I spent most of the day before with a breast surgeon who, upon examining the lump I found in my left breast five weeks prior, sent me to immediately get a mammogram, ultrasound, and multiple biopsies. We weren’t told anything at that point, but based on her reaction to the exam we expected the worst.
We got it the very next day, with a call from the doctor and a stage-two diagnosis. I was 33 years old and my world turned upside down. I had a lumpectomy the next month (and was upgraded to stage one), another one two months after that, four rounds of chemo, a boobal removal (OK fine, “bilateral mastectomy”), surgery to swap my expanders for implants, and another surgery to remove the implant after an infection.
From diagnosis to final surgery, breast cancer took about 13 months of my life. It also took my fertility (which wasn’t cooperative to begin with, but still) and left me with deep anxiety—but I never feared for my life. I was a small business owner who had stellar insurance thanks to my husband’s job. So good, in fact, then when we’d call Aetna and they looked up our account, multiple reps would comment, “Wow. Your insurance is good.” Yeah. We knew.
We lived in Brooklyn and had access to world-class care in New York City. We caught the sucker early and I didn’t carry the breast cancer gene. I sang songs about it on my pink ukulele (penning “The Cancer Card” and “Everyone’s Your Friend When You Have Cancer,” amongst others) and put a team together to fundraise and walk for Avon39. I figured this whole cancer business was a blip on the radar, and once I was done, I could go back to living my life.
In the years that followed, my husband left his job to work as a freelancer. We adopted a 5-week-old girl in June of 2014 and planned a move to the suburbs, looking forward to starting our new life with our new family. However, life had other plans (did ya see that coming?), and my cancer came back, stage three, in September of 2015. I was 37.
Last year, I had a surgery to remove the tumor in my chest wall, followed by 16 rounds of chemo, 15 rounds of radiation, and another surgery to remove my ovaries as a precaution to ovarian cancer. I’ll be the first to say that Obamacare is not perfect, and its costs are tough on my family. For instance, our premiums each month are almost $1,300 now (including dental and vision), and if we stayed in Brooklyn, it would have been $2,000 (without dental and vision. I know.). Above and beyond that, we spent an additional $10,000 last year on my care and still didn’t make my out-of-pocket coverage. Yes, we met the deductible. Yes, I was still going in-network. And yet: $10,000 later, we hadn’t hit the ceiling. If not me, then who could possibly reach this crazy number?
But the good outweighed the bad in spades. For one, I was able to keep my world-renowned New York City doctors who I had history and relationship with, and who I trusted. And sure, while I would have loved to have taken that money and gone on a sabbatical in Europe or put away money for my daughter’s college tuition or replaced our HVAC in our new home (sexy, I know), we never thought for a moment that one bill could come in the mail and bankrupt us. We never thought for a moment that my care could be compromised, and that’s the stuff that Am-I-going-to-die? nightmares are made of. While expensive for our family, our costs were within our means.
That $30,000 my family spent for the seven months of my care was a drop in the bucket to what we could have spent if I had not been covered under the Affordable Care Act. And here’s where the math that helped pass the AHCA doesn’t make sense to me.
If I wasn’t insured for my seven months of breast cancer treatment—two surgeries, a port placement and removal, 12 rounds of chemo, and 15 rounds of radiation—my family would have been in the hole for $300,000, easy. That doesn’t include all my medications, either, or my doctor visits or blood work or scans. Let’s make it $500,000, then, because just one blood test costs $650 and I’m too exhausted and anxious to go find my old bills and add them up and we know everything is astronomical, right? My cancer scientist friend (yes, I have one of those) told me this is way conservative, but let’s just keep the number here, ’K?
So now the AHCA supposedly “covers” those of us with pre-existing conditions because they added an amendment where there’ll be an extra $8 billion that’ll be used just for us. Ya know, when states opt out of covering us, because who cares about other humans.
I’m not great at math, but if you divide $8 billion by $500,000—and let’s say that’s what the “average” breast cancer patient saves in less than a year in treatment, conservatively—that only covers 16,000 of those treatments.
And even more incredible? It’s $8 billion over 5 years. So, 3,200 extra people in the whole country every year get the health care coverage that people without pre-existing conditions will receive. That’s what “flipped” enough Republicans to vote Yes to this bill who were voting No in March. Conservatives that have said, “No, this doesn’t do enough for my constituents with pre-existing conditions” are now saying “OK, sure, this’ll do,” to an extra 16,000 treatments for the whole country. An extra 3,200 treatments a year.
Who is telling the 236,710 American women who get diagnosed with breast cancer each year that they now have cancer and are bankrupt, since our premiums alone could skyrocket up to $25,700 a year? How will the 133 million other Americans who have pre-existing conditions be “covered”? Who are the Chosen 16,000?
We moved into our dream home in New Jersey in August, just a month after my last surgery. While we are finally living (and loving!) our “new life,” we’re scared for that life should the AHCA go through in its current form.
“Obamacare” saved my life and my livelihood. The AHCA is irresponsible and abysmal, and can cause many times more American casualties than any terrorist act. Reaching out beyond my own cancer bubble, I feel pain and sympathy for the elderly, rape victims, drug abusers, arthritis sufferers, those with dementia, cerebral palsy, certain heart conditions, mental health disorders, eating disorders, diabetes, emphysema, epilepsy, sleep apnea, paralysis, Parkinson’s, and one of my favorites—“pregnancy or expectant parent.” Yes, these are some of the pre-existing conditions identified by individual market insurers in most states. Very few are spared. How has this become a bipartisan act, instead of a human rights act? How can we be so thoughtless, so cruel to our fellow Americans? These are the questions that have been hard for me to stomach. This is what has made me an activist and fighter for the first time in my life.
Now, if you’ll excuse me, I’m off to schedule my six-month CAT scan, a special blood test, and an oncologist appointment. I better hold on to my wallet.