Protect Our Care :: From a Mother of a Child With Cancer

As a mother of a child with cancer, I am deeply grateful for the options and protections the ACA affords my son and other children like him. I am also deeply concerned about possible replacements or changes to the ACA that could affect my son. While I realize the ACA has flaws that should be addressed, and I acknowledge that healthcare reform is a complicated and multifaceted issue, all I can do is speak from our family’s experience. When abstract political ideas become law, these laws affect the lives of real people. This is the story of how the ACA has benefitted our family, and how possible changes to the law could have devastating consequences for children like my son.

In February of 2016, my 9-year-old son, Wyatt, was diagnosed with acute myeloid leukemia, a relatively rare and aggressive childhood cancer that affects about 500 children a year in the US. After six months of powerful chemotherapy and over 130 days spent as a hospital inpatient, my son was declared cancer free. Our whole family celebrated, and Wyatt was thrilled to begin school again in September with the rest of his class.

Unfortunately, our return to normalcy was short-lived. In November, Wyatt began complaining of headaches. An MRI revealed that the leukemia had returned, this time in his brain. Wyatt was hospitalized once again, facing an even more aggressive chemotherapy regimen, radiation, and a bone marrow transplant. As Wyatt prepared for transplant, we were hit with yet another terrible blow: Chemotherapy had significantly damaged his heart. Transplant was put on hold as we dealt with treating his heart failure, all the while trying to keep his leukemia in check.

As of March 2017, Wyatt recently finished his sixth round of chemotherapy in lieu of the bone marrow transplant we had hoped he would be able to receive. The good news is that he has achieved remission once more, but his heart remains significantly damaged and is too weak to endure a bone marrow transplant. Without a bone marrow transplant, there is a statistically significant likelihood that his leukemia will return. However, we are moving forward with chemotherapy treatments in the hope that Wyatt will remain in remission, and we are treating his heart as well. We pray that his heart will stabilize or even improve, but there’s a chance that his heart will continue to deteriorate, and, once his cancer has been in remission for two years, he will need to face a heart transplant.

As you can see, Wyatt’s medical situation is complex. He has now spent almost 200 days in the hospital and has endured more tests, procedures, and interventions than I care to count. His treatment has also been incredibly expensive. His medical bills in 2016 alone totaled almost $1.3 million, and he has a great deal of treatment still to come. However, we have been fortunate in his medical care. Last year, Wyatt was covered by a generous insurance policy provided by my employer, and our out-of-pocket costs were manageable.

When Wyatt relapsed, however, we faced an important decision. My insurance was more generous than my husband’s insurance, but considering the complexity of Wyatt’s condition and the nearly constant care a transplant would require, we felt I needed to quit my job. Fortunately, the ACA allowed our family to make this choice. We didn’t have to worry that Wyatt would be denied coverage for a preexisting condition if we changed insurance plans to my husband’s. I wasn’t trapped into holding onto a job when my son needed me more than ever.

Not only did the ACA give our family the ability to switch insurance plans, it also allowed my son to keep insurance once he had it. Before the ACA, “lifetime maximum” provisions meant insurance companies could drop a patient once his or her medical bills reached a certain limit. Often, this limit was set at $1 million dollars. Wyatt would have reached his lifetime maximum about five months into his cancer treatment, at which point his insurance coverage would have disappeared. He could have been deemed ineligible for regular insurance coverage for the rest of his life, and he was only 9 years old.

Before the protections of the ACA, survivors of childhood cancer faced the prospect of healthcare discrimination for the rest of their lives. Because they had to pay so much for so little coverage, many opted out of insurance coverage altogether as adults, even though they faced chronic conditions as a result of their treatment. (My son’s heart failure is one example among many.) Some stopped going to the doctor altogether, simply crossing their fingers and hoping that all would be well. Too often, all was not well, and former survivors unnecessarily suffered and even died as a result. Cancer survivors should not have to return to a scenario like this one.

I realize that some are suffering right now under the ACA because their own premiums and deductibles have risen, sometimes to unmanageable levels. I agree that this is a problem that must be fixed. Some feel that the only way to do this is to segregate the sick from the well in exorbitantly expensive high-risk pools, or to allow insurance companies to offer plans that don’t cover “essential health benefits” like prescription drugs or inpatient hospitalization. But I feel there are other ways to fix rising costs that don’t discriminate against those who need medical care the most.

Ours is a nation of abundance. While the government can’t — and shouldn’t — do all things, I believe healthcare for all should be a foundational right. There has got to be a way for all Americans to go to sleep at night without worrying that they won’t be able to obtain a doctor’s care, or that the medical care they have access to will threaten to destabilize their future or even bankrupt their families. This, in my opinion, should be a top priority in terms of governmental spending and should be deemed more critical than philosophical ideas about the role of government or tax cuts for the wealthiest among us.

This cause is personal for me and my family. I don’t want my son to have to be burdened by healthcare insecurity for the rest of his life. But my experience among other families caring for sick children has opened my eyes to the relative privilege our family enjoys at this moment in time. If the government prioritizes tax cuts for the wealthy over ensuring that all Americans can afford quality healthcare, it will become that much more difficult for middle-income families to afford insurance, especially if they are not fortunate enough to have a corporate or government job with generous benefits, like my family has right now. (Although I realize we are only a job loss away from losing access to those generous benefits.)

If laws are passed that allow insurance companies to cut back on “essential health benefits,” it is likely that the only insurance policies my son could afford as an adult would be those that don’t cover the very things he needs insurance to pay for — expensive medications and hospital stays.

And if laws are passed that cut Medicaid spending? Millions of children and their family members will suffer. My son receives care at Children’s Hospital of Minneapolis, and they report that over 40% of the children they treat rely on Medicaid. According to Children’s Hospital, cutting or capping Medicaid could have “devastating effects on pediatric health care and the kids we serve.” As a country, we should value the lives of all children, regardless of whether or not their parents happen to be employed by a company with generous benefits. And if that argument for the necessity of Medicaid isn’t persuasive, consider the following, also from Children’s Minneapolis:

“Medicaid has led to deep decreases in infant and child mortality rates. What’s more, Medicaid for children is as efficient as it is effective. Despite making up almost half of Medicaid’s enrollment, children account for only 20 percent of the costs. Research shows that children on Medicaid have higher educational attainment, better economic opportunity, and grow into healthier (and therefore less costly) adults than do children with no insurance at all. Clearly, investing in our kids’ health when they are young saves and improves lives, and saves money in the future.”

If you feel strongly that quality, affordable medical care should be available to all Americans, and that reform of the ACA should not be implemented on the backs of children and families who have already suffered so much, please call your representatives. I still believe our country is great because it is good. Just as I have hope that Wyatt will beat his cancer and his future will be bright, I believe that as a nation, there is a healthy way forward for all of us.