Why I’m Fighting to Save the ACA
When I was diagnosed with cancer, federal health care gave me hope.
This week, the United States Senate has begun voting on health care legislation that affects one-sixth of the U.S. economy, proceeding under a veil of secrecy with a process that is confusing at best. Millions of Americans are at risk of losing their health insurance and countless more face an uncertain road ahead, one that could include skyrocketing premiums and vanishing options for essential care.
I am one of those people.
On January 4, 2010, my 21st birthday, I was diagnosed with a rare form of Hodgkin’s lymphoma. I was an eager college student at the time, immersed in Amartya Sen and Paul Farmer books, and days away from studying abroad in Senegal. I was devastated. Cancer was uncharted territory for me. I was a healthy eating athlete who had never dealt with anything more serious than a gluten allergy.
While I would have preferred to study abroad, that spring I did get two intensive “real world” courses that I’ll call Oncology 101 and Economics of Severe Disease. Cancer sucks by almost every measure — chemo is grueling, treatment decisions are tough, staying positive is exhausting, and costs stack up.
But, I had a lot to be grateful for as well. I had a good prognosis, access to great doctors, and an incredible support system. And although the $5,000 deductible hit to my family’s savings made money tight, being covered by my mother’s insurance was an incredible relief, as bills started rolling in for the tens of thousands of dollars of life-saving treatment.
The Affordable Care Act, passed in March, also gave me hope. If I survived, which was highly likely, I wouldn’t have to fear being denied coverage due to a pre-existing condition or need to make major life decisions based on health insurance needs.
In August, my PET scan came back clean, and I was able to return to school that fall, newly in remission. With opportunities open to me, I was able to volunteer at a hospital in northern Cameroon, work as an underpaid intern in Washington D.C., and take out loans to pursue a graduate degree in public health.
Then, in April 2013, I experienced another life-changing diagnosis. After I had moved to Boston for grad school, I got sick again. A hacking cough, fatigue, and recurring sinus and double ear infections were getting in the way of everything in my life — my classes, job, and time with friends. After months of failed courses of antibiotics and numerous negative blood tests, I got a dreaded call from the head of oncology at Boston Medical Center. It wasn’t cancer again. Instead, I had common variable immune deficiency, a disorder that affects roughly 1 in 50,000 Americans. For me, it’s serious and chronic. Essentially, my body’s immune system no longer functions on its own and daily synthetic immunoglobulin injections stave off infection, anything from the common cold to meningitis.
Today, save for a new nightly routine involving needle kits and a Sharps container, I can mostly live a normal life. I am one of the lucky ones. Now with access to treatment, I am working on cancer and chronic diseases in low-income countries at a non-profit organization I admire, Partners In Health, where I’m learning from social justice warriors like Dr. Joia Mukherjee.
But like cancer, my treatment comes at a high cost. Without insurance or cost controls on medicines, immunoglobulin therapy can cost $60,000 to $120,000 a year in the United States. Very few Americans, including myself, would ever be able to cover these costs on an annual basis. Without access to affordable health care, my life and future are at risk.
I’ll easily admit that the current system isn’t perfect. Anyone who has managed a chronic illness on an average income knows the burden of premiums, out-of-pocket payments, and frustrating administrative hurdles. We need a health care system that works, and putting pressure on the democratic process to build something better is a noble goal. But, a better health care system does not mean stripping millions of Americans from the critical protections that the ACA, Medicaid, and Medicare provide. Many of the lawmakers on the hill have had politics, not people, in mind.
We need a health system that covers more, not fewer, Americans. We need lower out of pocket expenses. We need the same or better benefits than we have now. And we need to preserve programs like Medicaid to protect the most vulnerable among us. No one should have to worry or prepare for the catastrophic just because they aren’t wealthy.
Health care is a human right; it shouldn’t be harder to access if you’re poor or marginalized. And of all things, it shouldn’t be the hardest to access if you’re already sick.
It’s infuriating to see how hard many of our lawmakers are working to keep health care from those who need it most. This has become personal for me in a way I never would have imagined at 21, but I also know that my story is not unique. Many other Americans are at far greater risk due to the proposed legislation, and have fewer means to access the care they need. There will be more seemingly healthy young people, like me, who will get sick. They and their families shouldn’t have to suffer for it. I hope you stand in solidarity with our brave friends and neighbors and please join them in speaking up for the right to health over the next few hours and days.
