Why Repealing the ACA Would Make America Sick Again


My son has Angelman syndrome. It’s a name attached to a lot of additional diagnoses. He also has moderate intellectual disability, severe speech/language disorder, epilepsy, ADHD, insomnia, and allergies. He takes two medications for seizures, four different medications for behavior and ADHD, four different medications for sleep, one medication for allergies, one multivitamin plus a B6 supplement. He’s had one abdominal surgery (for reflux and to put a G-tube in), two hernia repairs, and eye muscle surgery.

He communicates using an augmentative communication device as well as with a few words and signs. He wears orthotics and has a wheelchair/stroller for longer distances. He receives speech therapy and until this school year also received occupational therapy. Will sees a general pediatrician, a neurologist, a developmental-behavioral pediatrician, and an ophthalmologist. He used to see a GI specialist and neurosurgeon as well. The last thing I need to worry about is health insurance that enables him to get all of this care without bankrupting my family.

I understand that insurance companies may consider my son’s complex medical needs to be an expensive nightmare. The Affordable Care Act (ACA) gives me and my family peace of mind that he will have insurance and access to the health care he needs. Without provisions in the ACA such as no penalty or denial for pre-existing conditions and no lifetime caps on coverage/costs, my son would not be where he is today.

The medical care, medications, medical equipment/technology, and therapy services my son is afforded by having good insurance coverage are the reasons he is defying the odds. Children with Angelman syndrome often don’t talk at all. He says about 40 words. Children with Angelman syndrome often have seizures that are almost, if not completely, impossible to control. His seizures are very well-controlled, so well-controlled in fact that we’ve just finished weaning one of his three seizure medications. Children with Angelman syndrome have severe sleep problems, and some never sleep through the night. My son sleeps through the night almost every single night; without medications he’s up all night and all day.

I am a developmental-behavioral pediatrician and care for children with developmental disabilities and special health care needs. I hear stories that are similar, if not more powerful than my own, from the families of the children I treat. Good insurance enables children of all abilities to lead healthy lives and families to be “normal.”

I believe if our lawmakers repeal the ACA without a viable replacement plan, children like my son will suffer. It would be a completely irresponsible and tragic mistake that would affect the lives of millions of people across our country. Currently, 95 percent of all American children are insured, and this is due in large part to the ACA. If we truly want to “make America great again,” we must think of its future. Children are its future. My son and my patients are the future of this country. And if we don’t allow them to grow up to be healthy adults who can maximize their potential, America will not be great. It will be sick and weak.

I understand that some people view health insurance in the same light with which they view homeowner and automobile insurance. Health insurance is seen as protection from a devastating and unexpected health problem or event. That may be true for persons who have no pre-existing conditions. For those who do have a pre-existing condition, however, insurance is the gateway to health care and the means of being healthy. Without health insurance, even the simplest of medical conditions can progress to severe and even life-threatening stages. There are often serious, negative financial implications for those without health insurance when — not if — they experience a health crisis. Out-of-pocket medical expenses can lead to financial stress on individuals and families, and at times can even lead to bankruptcy and financial ruin.

There’s more: illness and poor health status often leads to a loss of productivity in the workplace. There are many individuals who have chronic medical conditions and are fully capable of getting an education, acquiring and maintaining a good job, and being productive citizens in their communities. If health insurance is taken away from these individuals, the communities in which they live would be adversely affected.

I believe the high risk/high cost groups being proposed are not the answer. When these Americans are put into a separate risk group, this actually leads to increased, rather than decreased, cost to all Americans. Funding high-risk plans that would provide an equivalent level of coverage to what my son has at the present time actually costs more than it does today. This is why high-risk pools have been unsuccessful when tried in the past and aren’t a realistic or feasible answer for today’s health insurance dilemma.

My child matters. Every child matters. Children are the future of our county, and every single one of them matters – including children with developmental disabilities and special health care needs. As a mother, and a doctor, I am watching what happens in Washington, D.C. and in Mississippi for my child and my patients.

There are faces behind the insurance cards that so many in our nation seem to want to revoke. These faces have names, and families, and stories, and dreams. Without said insurance cards, these children are much less likely to reach their dreams, and some may not even reach adulthood. To put it simply, without insurance, it is difficult at best – impossible at worst – to maintain one’s optimal health status. When health declines, children are more likely to be hospitalized, and as we all know, hospitalization is extremely expensive. I thought repealing the ACA was supposed to save us all money…

Do not simply repeal the ACA because another administration put it in place. Consider those constituents who are the very reason you are in this position of power, and make the ACA bigger and better than it is right now. Or come up with a better viable plan to keep the children of our country insured. But do not treat my child or anyone else’s like they don’t matter, or like they are a problem you’ll get around to solving later — because if you do, it may be too late.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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Thinkstock photo by Didesign021.


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