In many ways, we are a typical American family. My husband and I have two children. We own a home. We have no consumer debt. We paid back every dime on our student loans. We are fiscally responsible people.
Where we are unusual is that my husband and I have spent our careers as freelancers. I write music. My husband is a playwright, a novelist, and a medical writer. We appreciate the flexibility of being our own bosses and take seriously the extra burdens that come with being self-employed, including making our own Social Security and Medicare and tax payments. Bigger tradeoffs include foregoing benefits that people who work for companies take for granted: paid vacations, matching funds for our retirement accounts, and health insurance. Despite the enormous price tag, we have purchased insurance—insurance we have never let lapse—for our family on the individual market our entire adult lives.
When we moved our family out of Brooklyn to western Massachusetts, we were shocked to discover health care in Massachusetts was financially out of our reach. Before the passage of the Affordable Care Act, we didn’t qualify for assistance toward our premiums, and a new Massachusetts-based plan would have tripled our costs. For a time, we kept our insurance in New York and drove to Brooklyn every time we needed to see a doctor.
The Affordable Care Act increased the income caps to qualify for direct premium support enough so that we were able to purchase a heavily subsidized plan on Massachusetts’ Health Connector exchange. But in the bumpy rollout, Massachusetts’ state health insurance exchange website had communication problems with the federal site (healthcare.gov). When it became clear Massachusetts couldn’t solve the problem right away, the state temporarily put everyone with a pending application on MassHealth (Massachusetts’ version of Medicaid).
MassHealth’s coverage was the most comprehensive health care we had ever had. For two working artists who had regularly shelled out $10,000 a year in premiums alone, it was a miracle. There were no deductibles or co-insurance. We paid $3.65 for prescriptions. Care for our two children was completely free, as was dental care at our local community health center.
Which was a great thing, because in 2014, just as our new policy kicked in, I was diagnosed with whooping cough. My husband lost the top of his finger in a hockey accident. My son suffered through a bad case of pneumonia. And then my husband got Lyme disease. Any of these things would have set us back thousands of dollars under our old plan. Under MassHealth, we didn’t pay a dime.
Then, that September, the worst happened: I was diagnosed with widespread DCIS, an early form of breast cancer. I endured four surgeries, including a unilateral mastectomy and reconstruction.
We had no idea how complicated my medical journey would become. The day I got my diagnosis, I was working with our navigator, a local public health official trained to help with the application process, to complete our application on Massachusetts’ now-functioning health care exchange. He told me about Massachusetts’ Breast and Cervical Cancer Treatment Program, a Medicaid initiative designed to cover middle and low-income women through their treatments. We were relieved to discover I qualified. My husband landed on a subsidized exchange plan for $123 a month. Our two children maintained their enrollment in MassHealth and their care continued to be covered as well. The options he helped us find saved our family from financial ruin.
Almost immediately after my mastectomy, I developed chronic complications. Since then, I have come to learn I was in the early stage of a complex autoimmune condition unleashed by my silicone implant. Despite having the implant removed more than a year ago, the most serious symptoms persist: near-constant joint pain and exhaustion as well as the severe cognitive impairments that are a hallmark of this disorder. Frequently it feels as though someone has reorganized my brain but forgotten to leave me the instructions. It’s frustrating; it’s terrifying. The battery of medications I take permit me to drive my son to school or shop for groceries, but at this point, my team of devoted doctors is increasingly unsure whether I will ever be well again.
Only one thing has made it possible for me to survive this at all: the coverage I received through MassHealth.
Now, all that stands to change. Although the pre-existing condition clause survives in the current GOP bill (so I will in theory be able to buy coverage), for us everything rests on how the Republicans end up dealing with the Medicaid and the federal subsidies that bolstered our health care (and that of 20 million other Americans) in the first place. Even as universal coverage has strong bipartisan support in Massachusetts, the reality is that we don’t have the state-level funds to provide those subsidies and bankroll expanded Medicaid coverage without help from the federal government.
The passage of the ACA did more to shore up and secure our little family than any other piece of legislation in my lifetime. It has enabled me to face my grave illness without worrying whether cost would be a factor in my treatment or whether I could try the next medication my doctors prescribed to relieve my pain. Even with the plan, we still accrued $15,000 in out-of-pocket medical expenses in both 2015 and 2016. We are on track to spend about that much this year as well. Where we will find double or triple that amount to throw at our family’s medical care, if and when we lose our governmental support, is budget math I can’t even begin to calculate.
The Republican plan leaves us with more questions than answers. Will we have to spend down our savings to afford the premiums and deductibles? How will I come off the $1,000 worth of drugs I take every month when we can no longer afford to pay for them? What happens when my immunologist says I need more infusion therapy—at $90K a dose? In my darkest hours, I have contemplated suicide to spare my family.
It took months of careful, gentle prodding by my doctors to get me to understand that I am now disabled. Having accepted that mantle, it’s hard not to feel like the new health care bill is designed to destroy me. Although it’s impossible to know where the machinations of Congress will eventually lead the bill, assuming the new health care law returns us to the days before the protections of the ACA, and the Medicaid expansion at some point goes away, we are anticipating a premium price tag of $2,400 a month or more, based on what a similar plan would have cost in Massachusetts before the ACA. That’s twice our mortgage payment and 30 percent of our income. And that’s before the additional price of care: substantially higher co-pays and deductibles, plus five figures of uncovered costs. When Republicans in Congress talk about forcing insured patients to have “skin in the game,” I wonder if they understand just how much skin they’re talking about.
I understand there are problems with the Affordable Care Act: It doesn’t go far enough in the assistance it provides. For families like us, subsidies and tax credits end at 400 percent above the federal poverty level. And here in Massachusetts, the least expensive bronze plan is now about $10,000 but has a $5,500 annual deductible. We know how fortunate we are to have landed three of us on Medicaid-based plans, which offer benefits that do not exist on the open market. In an ideal world, all Americans would have access to this sort of comprehensive coverage.
Instead, Medicaid is on the chopping block—and not because it’s failing, but because the people who benefit from it too often fail to speak up on their own behalf. Their silence has nothing to do with a lack of will or words. They are simply too busy struggling to survive.
Medicaid benefits our poorest, yet it is also now assisting those higher up the income ladder—people like me, who would vastly prefer to be thriving without it. Many more people than you suspect have turned to it in time of need. They are your friends and neighbors. They are families whose lives have been upended by illness.
This is what happened to my family. And with a single diagnosis, it could be your family, too.