It’s Christmas Eve, 2011. I’m a recent college graduate, but I weigh ninety pounds and am dependent on intravenous Dilaudid to control bone pain. I’m six weeks into a two-year treatment for Acute Lymphoblastic Leukemia with T-Cell lymphomatous features. My roommate is a college sophomore who also has leukemia. AYA patients (adolescents and young adults) are more common than I realized—we are six times more likely to develop cancer than children ages 0-14. My mother sits in the hospital room, unable to sleep. She composes a letter to the White House.
“Before the Affordable Care Act, Leslie would lose her health benefits through my employment when she turns 23 on January 9th, 2012…The cost of her care is huge … paying for that care personally would bankrupt my husband and me….” she writes.
“Each day she struggles on, fighting for the life that she wants to live. And every day we thank Barack Obama for giving her the chance to do so,” she concludes.
Her letter is published on the Obama campaign’s blog twice, but I decline to contribute a photo or video, wary of politicizing my illness. I want to affect the opinion of those opposed to the ACA, but I’m not a success story yet.
Of the 70,000 young people diagnosed with cancer every year in the United States, I’m one of the 61,000 who survive. On January 12, 2017, I achieve five years remission and officially feel comfortable enough to call myself a “survivor.” Ironically, while I sleep that night, the House votes to begin to dismantle the law that saved my life.
In the morning, I watch Paul Ryan at a CNN Town Hall. Ryan repeatedly refers to the ACA as “Obamacare,” a name I never use. The pejorative distracts from what the law actually does, and conveniently confuses voters. The pervasiveness of the myth that Obamacare and the ACA are two separate laws is evident in contradictory polls.
“First of all, I’m glad you’re standing here,” Paul Ryan tells a cancer survive who was diagnosed at 49. But his empathy wanes as he tries to assure him that high-risk pools for the “really expensive people” are better for him than the ACA.
The idea that I could spend the rest of my life in a high-risk pool, isolated from the rates and choices other healthy people have because of a disease I did nothing to earn and worked hard to defeat, sounds more like punishment than justice. While watching Ryan, I have to ask: at what point does empathy supersede ego? If a conservative white male had signed the ACA into law in 2010, would there be such urgency to repeal it?
I have cited the President-elect’s supposed support of the ACA’s policies on preexisting conditions and coverage for young adults as a comfort. However, as Margot Sanger-Katz in the New York Times reports, “Senate Republicans recently voted against nonbinding resolutions to preserve those measures, suggesting they may be less committed.”
I’m not holding my breath—and neither are the other AYA cancer patients and survivors. In Emily Alford’s revealing essay for Lenny Letter, the 32-year-old breast cancer survivor explains, “I can’t afford to entrust my life to a system Donald Trump has promised to snatch out from under me,” and opts out of an ACA insurance plan.
I once had to make the same anguishing insurance decision. At 26, I signed up for Health Republic, a CO-OP supported by the ACA. Weeks before the hard-earned milestone of an appointment with a survivorship specialist, Health Republic was forced to close. The New York State of Health offered another plan, but it didn’t cover my oncologists at Sloan-Kettering.
Not wanting to change doctors, I found a private plan for $800 I couldn’t really afford. Still, the ACA protected me from being denied for my preexisting condition, and I tearfully overnighted the check and application so I could be covered in time for my appointment.
It was tempting to accept my circumstance as a shortcoming of the ACA, but I had to recognize that Health Republic didn’t receive the funding originally intended for it. In 2014, health insurers only saw $362 million of the $2.87 billion proposed because of appropriations riders passed by a Republican Congress. They were underfunded again in 2015. The subsequent failure of CO-OPS like Health Republic then gave those opposed to the ACA a place to point fingers as proof of its supposed failure. Meanwhile, the underfunding threatened my access to care and pursuit of a normal, productive life post-treatment.
Young adults are the immediate future of this country. 70,000 of them are going to be diagnosed with cancer—many of them curable with proper access to care. At the rate Republicans race towards repeal, I grimly predict a much more difficult survivorship, and an increase in the 9,000 young people we already lose to cancer. Nine thousand Americans on the cusp of reaching their full potential, 9,000 ideas lost, 9,000 future thinkers, parents and leaders—lost because they were diagnosed at the wrong political moment.
I didn’t share my story in 2012 for fear I wouldn’t survive. At five years remission, I share it for the survival of others. The timing of my diagnosis and treatment was perfectly in sync with the political climate, and that’s why I’m here today. To the President-elect and Republican lawmakers: make your changes and call them whatever you want, but don’t repeal the ACA entirely, however symbolically appealing that may be. To repeal without replacement and guaranteed upholding of patient protection is to deny our most vulnerable and most promising population the chance of survival. The repeal is a direct threat to our basic freedoms of life, liberty and the pursuit of happiness. Without the protection of the ACA, we must live not only with the fear of recurrence, but worse—the fear of recurrence with no access to affordable health care.
The author, casting an absentee ballot for Obama in 2012 while receiving chemotherapy.