Before you repeal the Affordable Care Act, please consider…
Dear Republican Members of Congress,
I know you are working feverishly to repeal the Affordable Care Act. As a 32 year old with metastatic cancer, I look at this situation through the lens of the AYA (adolescents and young adults) cancer population, as well as our nation’s healthcare dependent. For the 70,000 young adults that are diagnosed with cancer each year, stakes are incredibly high, and for some, it’s life or death. My fear around your threat of repeal is the very real possibility of a return to a discriminatory healthcare system that favors the wealthy and the healthy. Your party’s crusade to demolish the ACA is a direct and personal attack on the dignity and well-being of hundreds of thousands of our nation’s youth.
Everyone can agree that the ACA is imperfect. Many thousands of people have seen their rates rise and benefits fall. Some of my AYA friends are struggling to receive adequate care under their current plans. These concerns are valid and it is imperative that they be addressed. But I also know that there are millions of people who can now access care where it was once denied or cost prohibitive to them. Millions can see a doctor without fear of financial ruin thanks to the ACA.
In many cases, including my own, the anti-discriminatory provisions in the law barring insurance companies from denying individuals for pre-existing conditions, and imposing annual and lifetime limits, have been life-saving. Federal subsidies and the expansion of Medicaid have eased the immense financial burden of illness that has crippled so many Americans. To simply write off all of the good that the ACA has done in the name of partisan politics, is to sentence those same Americans to financial devastation, poorer health and possibly death. The past six years have revealed that while needing reform, we have something to work with in the ACA. And work with it, improve it, build upon it, is what we should do.
My own story:
At age 25, I had my first scare with cancer when a mole I’d had my entire life turned out to be stage 1 melanoma. Despite being insured, more than $10k in out-of-pocket expenses accumulated for this relatively minor brush with cancer. Far more damaging, however, was the resulting pre-existing condition that would forever tarnish my health record.
Three years later during a gap in employment at 28 years old, I noticed a small lump appear in my abdomen. Unable to stomach the hefty out-of-pocket expense I knew I’d incur just to step foot in a clinic without insurance, I put off having it checked out. When the mass grew to the size a walnut over the course of the next month, it was only then then that I gave in to seeing a doctor, regardless of expense.
The results from pathology came by cold email. It was written that my melanoma from years before had metastasized and I would need to see a specialist immediately. Having done previous research on melanoma, I knew this type of cancer was lethal, and the fast pace at which it grows and spreads. And so began a panicked, emotional, and ultimately futile attempt to purchase an individual health insurance policy. Unsympathetic denial letters came one by one citing that verboten pre-existing condition until I had exhausted applying for every policy on the market. To insurance companies, I was more of a liability than a human being worthy of saving. I wondered whether their answer would be the same if they had to deny me to my face.
Hopeless and agonizingly aware of the cancer cells flourishing in my unprotected organs, I went to my local office of Health and Human Services, waited in line fighting tears and shaky nerves and asked for help from the state. While my application was under review, I made an appointment with a melanoma specialist, fully prepared to bankrupt myself and my entire family to begin treatment.
I’m one of the lucky ones. Fortunate enough to live in California, a state that accepted federal funding for expansion of Medicaid after the passage of the ACA, I qualified for Medi-Cal assistance and could access care at UCSF, one of the foremost research hospitals in the country. When the free market failed me, it was the government and the Affordable Care Act that saved me.
Almost four years later, I am still not cured of my cancer. To date, I’ve had a craniotomy and brain radiation, a small bowel resection, close to 50 immunotherapy infusions, months of targeted therapy, eight emergency room visits, more than a dozen PET/CT scans and brain MRIs, a colonoscopy, endoscopy, hundreds of blood draws and countless ultrasounds, CTs, X-rays, EKGs, FNAs, and more, all adding up to seven figures of treatment costs with no real end in sight. Without the ACA, I would likely be dead and my family surely would have gone bankrupt trying to save me.
My country has made a huge investment in me over the past four years, something I will never take for granted. I am forever grateful to President Obama for fighting to pass the ACA and protect it from threats of repeal over the years. With the life I’ve been spared, my hope is to make a positive and impactful return on that investment. But like many young people in similar situations, and the millions who now have insurance through the ACA, the future is uncertain. Repeal without a viable and improved replacement would risk interrupting, delaying or prohibiting people from receiving life-saving treatments. The fear of loss of coverage is profound for anyone who is sick, was once sick, has a child or is pregnant, is aging, breaks a leg, or just discovered a new lump. To play politics with our health is inhumane.
The little we know of the Republican replacement plan offers no confidence. We could very well see annual and lifetime limits return, restrictions to access for people with pre-existing conditions, elimination of standard required benefits, and a system that once again favors the wealthy and the healthy. This does not look like progress to me.
Eliminating or slashing subsidies provided by the ACA and replacing with a tax credit based on age rather than income assumes young adults don’t get sick, and treats millionaires the same as those straddling the poverty line. Examples such as my own, as well as the roughly 70,000 young adults diagnosed with cancer each year, are a case in point.
The high risk pools that have been offered in lieu of the pre-existing condition protections of the ACA essentially sanction the discrimination of people with illness (or “very expensive individuals” as Paul Ryan likes to say) by preventing us from purchasing the same affordable, comprehensive and expedient coverage available to healthy individuals. Prior to the ACA, many high risk pools were known for astronomically high premiums and deductibles, crippling out-of-pocket expenses, long wait lists, and annual and lifetime caps that would be easily exceeded by anyone needing extensive care.
Health Savings Accounts also present difficulties for cancer patients that need to take time off, or significantly reduce work hours for treatment demands, impeding their ability to contribute to an account. The HSA option also fails to consider the indirect costs associated with cancer that create an additional financial burden on the patient. Consider the transportation and parking fees for hundreds of appointments, retrofitting living spaces to accommodate new physical challenges, purchasing healthy, organic food and supplements to boost nutrition, new clothes for drastic weight gain or loss, wigs, acupuncture or massage to manage pain, and so many more overlooked and uncovered expenses associated with cancer. After all of this, there is little disposable income to add to an HSA.
For anyone, but particularly for young people who have faced disease early in life, these options can be a cruel condemnation to physical, emotional and financial poverty.
So, to you, Republican members of Congress:
I urge you to cease your rush to repeal the ACA and thoughtfully consider the ways it can be reformed, built upon, and made better, while preserving what already works. I ask for empathy over partisan politics and to apply truth and dignity in your vote. I encourage you to invite young cancer survivors into the room and listen to their very real concerns and fears. If you cannot tell them directly to their face that dismantling their protections under the Affordable Care Act will be good for them, then I implore you not to do it.
Sincerely,
Ashley Walton
P.S. I have a lot of friends who are currently fighting, or have beat cancer. Here are just a few of them.
