health care

ACA Repeal Affects Families

There has been a lot of talk about repealing the Affordable Care Act (ACA) recently. There are several things that concern me about this with regard to how it will affect those living with Down syndrome (DS). The first is the pre-existing condition statute. The current law forbids health insurance companies from denying coverage to anyone, regardless of health history. It also forbids companies from charging higher premiums to enrollees just because they have a pre-existing condition. Even if your child has no other health issues, most insurance companies consider DS itself a pre-existing condition. Before the ACA was implemented people with DS and their families were essentially locked into an insurance company. They were hesitant to change insurance providers or to leave their jobs because of the fear that they would no longer qualify for insurance, or that if they did they would be charged prohibitive premiums. People also lived in constant fear that their employer would change insurance providers or that they would be laid off. People often stayed in jobs that were unfulfilling or declined better positions with more opportunities because they were afraid that they wouldn’t qualify for insurance with their new employer. This placed an undue and unfair burden on families who had children with DS.

The other concern I have about the repeal of the ACA is that we will lose the ban on lifetime limits. Before the ACA, insurance companies could set a dollar amount for how much they would pay to cover medical expenses for any given individual. Essentially, they could say, “sorry, you’ve reached your lifetime limit and we will no longer pay for your medical expenses”. These are the kinds of events that bankrupted families before we had healthcare reform. You can google this topic and read hundreds of stories about young children who exhausted their lifetime limits. The LA Times published a story in 2008 about a little girl who had what her parents thought was an ear infection. It turned out she had a virus that damaged her heart. She went over her lifetime limit within three weeks of the original diagnosis. She was 20 months old. There are hundreds of stories of children who met their lifetime limit before they even left the NICU. This meant that these children were cut loose from their insurance companies, who never had to spend another dollar treating them. Imagine that your child is in the NICU receiving life-saving treatment and your insurance company calls to tell you that you are fast approaching your lifetime limit. What are your options? You have to choose between allowing your fragile baby to get the care he or she needs and being bankrupted by medical bills. If you reach your lifetime limit you could seek coverage from other insurance companies but, of course, your child has a pre-existing condition so no one is required to provide coverage to your child and if they do provide coverage, they can charge astronomical rates. None of the plans set forth to replace the ACA have yet addressed the topic of lifetime limits but if the ACA is repealed those prohibitions will go with it. 

Before the ACA, which banned lifetime limits and discrimination for pre-existing conditions the anecdotal stories of families being forced to decide between treating their child’s cancer, heart condition, or other medical issue or to pay their mortgage or other bills were heartbreaking. If you know any families who have children with medically complex needs you know that they already have so many challenges. I have a good friend with a 10-month-old daughter who is absolutely the joy of her family. She has been inpatient for over 100 days of her young life. She’s had two heart surgeries, including one to implant a pacemaker. Her parents already have to juggle full-time jobs, managing their daughter’s complex medical issues, and visiting her in the hospital against meeting the needs of their older daughter and the demands of daily living. Thankfully, they live close to the hospital so they don’t have the added financial strain of paying for hotel rooms, which can add up to several hundred dollars a week, but they still pay out of pocket for parking, gas, and meals. Having your child in the ICU is bad enough and the additional financial resources required are numerous, but before the ACA they had to wonder “is this the hospitalization that will put us over the limit?” and if it does “how will we ever be able to afford another insurance?” At least with our current insurance plans, we take those two huge worries away from them so they can focus on helping get their daughter home, where she belongs.

For a society that purports to believe in family values and family first, a compassionate health insurance bill is the only option that could possibly align with those values. 

For more information about how the repeal of the ACA might affect those living with DS, check out this fact sheet from the NDSS.