Infusing Love: Now What?

Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.
This week the Infusing Love Mom’s Blog will tackle a touchy subject: What happens to health care in 2017? Is there a replacement for the ACA that will offer support and protections? Whether your politics lay left, right, or center, as a community, we all live with having bleeding disorders in our lives and the uncertainty of what is next.
HFA is committed to assisting and advocating for our community’s families. We recognize that there are many perspectives of what will be most successful for our community. We have asked two authors with very different political views to weigh in on this topic. They are savvy, educated Moms who know their stuff. Both have good points! We’ve asked them to write anonymously so we can view this overall, not personally. We are a team after all, working to raise our kids successfully. Let’s find the ways to best achieve health care success for our families together.
Thanks, Kimberly Haugstad
(HFA’s CEO & President… and mom) 

Mom #1

2,487 days.
That’s how many days I had. It’s the number of days from when President Obama signed the Affordable Care Act (ACA) into law and the Senate of the 115th Congress of the United States took the first steps to repeal it without a replacement plan.
That was 3,581,280 minutes of not worrying about having to ration my son’s medications and healthcare visits or worrying just how close we are to hitting the lifetime limit on his insurance coverage. I know how long those phone calls with the insurance company can take – my son had maxed out multiple one million dollar plans because of lifetime caps before ACA was passed.
355 weeks and 2 days was all that I got before I had to worry about whether my precious son would be denied coverage because he had the unfortunate luck of a genetic mutation whereby his blood lacks the ability to clot.
Who knows what President-Elect Trump will propose by way of a healthcare plan when he officially takes office, but at that point I’ll be down a few more days to figure out what to do next to ensure my son has access to care. The promises of a new plan have, in my mind, been empty promises to date: there’s no written plan laid forth that gives me the same peace of mind that my son will have access to care.
Certainly the last 6 years, 9 months, and 20 days weren’t completely carefree. We did not needlessly infuse factor and visit the doctor at every given opportunity. We have a child with hemophilia – life is never carefree.
The “Affordable” Care Act wasn’t as affordable as my family had hoped. We saw our premium and deductible costs skyrocket over the last few years, but we were faced with five-digit deductibles and premiums even before ACA passed. So I don’t place all the blame of the cost of coverage on the ACA; much of that has to do with the insurance industry as a whole. The insurance industry is a for-profit business. They would like to make a profit off of my son’s illness. Having hemophilia doesn’t equate to profits for them. I definitely still had plenty of frustrating and beyond stupid conversations with insurance companies after the passage of ACA – but even so, I always knew that my child was valued beyond just the price of his healthcare. ACA was about access in my mind. The difference is that before the ACA a for-profit industry could, and did, strip him of his access to care.
The ACA has provided my son and my family with protections — protections that I likened to the civil rights moment for those with chronic illness. No longer could patients, PEOPLE, be discriminated against because they have pre-existing conditions or have limits placed on their care. No longer could a bounty be placed on their head and their health care cut off when some arbitrary dollar amount had been reached. No longer did I need to worry that when he graduates from college he would immediately be booted from his health insurance. I had peace of mind that he would be covered until he was 26 years old under my plan. With the Affordable Care Act I knew that my precious little boy would be afforded access to the care he both needs and deserves. I had 2,487 days where I did not have to try to explain to him that legislators, the men and women who make the laws in our country, viewed him as a second-class citizen.
2,487 days.

Mom #2

I agree with the general ideology behind the ACA. I believe that in a country as economically wealthy as the United States everyone should have access to basic, affordable medical care. I also know that when politicians, corporations, news outlets, and the like talk about health care they are talking about facts, figures, things that seem abstract and easy to gloss over, but I also know that these facts and figures are people. They are children. They are not nameless or faceless to me. My family is one of them.
However, I have disagreed with the ACA from its inception. Not because I am heartless and do not know the stories, but because it was poorly developed, and, I believe, it was done without regard for immediate and long-term consequences. I believe that the root of the issue with the American health care system is not access to health insurance but access to affordable health care. The ACA made health insurance mandatory; it did not make health care affordable.
In my opinion, what the ACA did was make health care more expensive. We are a typical middle-class family. My husband and I both have college degrees. I am a stay at home mom. My husband works incredibly hard to afford me the opportunity to stay home with our children. Since the ACA, our reasonably priced family health insurance premiums have skyrocketed year after year. Nothing about our actual plan has changed.
We now, as a family, pay more for our monthly health insurance premium than our mortgage payment.
In my family’s case, the ACA did not lower my costs; the promises of reduced costs have fallen on deaf ears in my house.
The ACA and its proponents talked a great deal about access to tax relief for purchasing insurance if you or your family are under a given income threshold. The law was written in a way that if you have access to affordable health insurance through your employer you may not receive the tax benefit. However, there is a loophole, also known as the “Family Glitch,” and an employer only has to provide affordable employee health insurance coverage and the same does not have to apply to family coverage provided by an employer. If my husband were on his plan as a single man, he would pay nothing.
Also, because my husband’s employer provides affordable single coverage this almost eliminates us from attempting to get health insurance in the marketplace. I did a great deal of research on the marketplace. If we were to enroll in a marketplace plan, which we would not receive a tax benefit for, the most affordable plan would be almost $1,600 per month with a weighty deductible and a burdensome out of pocket max per person. It equates to more than five-digit dollar amount a year on health insurance, if only my son with hemophilia reaches the out-of-pocket max. The cost would be even greater if anything happened to another person on the plan.
More importantly, I am sadder to see the reactions from those in the bleeding disorder community when I mention my dislike for the ACA. I agree with not having lifetime caps and no pre-existing conditions, but it seems, in the community, to disagree with the ACA is akin to wanting to harm those in the community.
I want us to all come to the table. I want to repeal and replace the ACA in a matter that actually reduces the cost of treatment, and no one has to fear losing coverage. I believe that this can be done. But I also believe that just because you have access to health insurance does not mean you have access to quality, affordable coverage. And that is my problem with the ACA.

*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare provider.