Friday, July 28, 2017

We All Have the Same Fear

I am living with a rare disease. I am considered disabled. I am a woman. And I could not have survived on Obamacare.

Wait, what? Did I just say that?

Because facebook would lead you to believe that anyone with a pre-existing condition or chronic illness or is female cannot possibly think there can be any solution other than the ACA for health insurance. But for me, the opposite is true. An Obamacare policy would not have allowed me to see 2 of my much-needed doctors and would not have covered 2 essential medications. Both of the doctors and medications are a major reason I have been able to avoid constant, recurrant, life threatening anaphylaxis. I do not have the luxury of simply finding new doctors or switching to a different medication. On top of that, a policy that denied doctors and medications as well as significantly increasing my deductible and out of pocket max would have run about 40% of our monthly income...a 60% increase in cost with a significant drop in coverage.

Let me go one step further. I could not have survived on Obamacare, but the ACA saved my life.

Wait, what?

Yep, you read that right, too. Mandated coverage for pre-existing conditions, the elimination of annual and lifetime caps, and being allowed to stay on my parent's policy until 26 (and then longer with COBRA) guaranteed me the coverage that I have had the past 10 years that has kept me alive. The very policies that would have been a disaster for me had I been forced onto an Obamacare plan were the same ones that offered me the lifeline that ensured my healthcare over the past few years.

I'm sharing this with the hope that this can be an example of how nothing is ever 100% bad or good. Because I think that is being missed right now. The Republicans are operating under the premise that the ACA has to be wrong for this country because it was put into place by the Democrats when the reality is that it did make some big steps in the right direction. At the same time, the Democrats need to recognize that while there were some pieces to the ACA that were very good and should be kept, it was not perfect, and there is definitely still room for improvement.

Too bad that right now the healthcare debate is an emotionally charged argument with no actual movement in a positive direction. The Republicans keep throwing new repeal and replace plans together before the previous one has finished circulating through Congress, and the Democrats continue to rely on the voices of those who benefited the most from Obamacare to sway the emotions of the public. Neither is the right course of action. The ACA is not the savior of the healthcare system that the Democrats so desperately want people to believe. But the Republicans don't have anything better, and are just treating this issue like another political battle to win rather than recognizing that the decisions they make will have a significant impact on the lives of millions of Americans.

I know this is a heated topic. I am not going to even try to pretend that I have a solution, because I don't. And that's not my point for writing this post anyway. Like I said at the beginning, pretty much the only story going around facebook is the idea that anyone disabled or female or living with a chronic illness is fully in support of Obamacare and the ACA. I just wanted to share another perspective that has been missed either intentionally or simply because people are scared to even suggest there might be something wrong with the ACA for fear of being accused of all sorts of racism, homophobia, ableism, etc.

There is no perfect solution. There will ALWAYS be people who fall on the wrong side of whatever policy is put into place. As I shared above, it appears that my experience falls into that category for Obamacare. It is an incredibly difficult position to be in to recognize that the same legislation that increased access to healthcare also effectively ruined my access to the only doctors and treatments that are able to do anything for me.

Part of the reason this has become such a heated debate is due to the fact that people are scared. How can they not be? People who are only alive because they had access to healthcare are watching and waiting to hear how their lives may change as various policies are circulating through Congress. But just as they are terrified of losing access to healthcare, I want to remind everyone that there are those of us who fell on the wrong side of Obamacare also struggling with that SAME FEAR.

I understand that Obamacare allowed millions of Americans to have access to healthcare. I understand that it made progress in improving our badly broken healthcare system. But just because I understand doesn't mean that I don't have the very same fear of how these policies will impact me in the future...I'm just in a slightly different position where Obamacare IS the problem for me. The fear for those of us facing losing coverage under Obamacare is JUST AS VALID as the fear everyone scared of losing coverage if the ACA is repealed is feeling.

Now, please don't mistake this post as support for whatever policies the Republicans decided to submit for a vote this week. Despite my experience with Obamacare, I also cannot support attempts to repeal the ACA simply to win a political victory. As I said earlier, I DO recognize that there were positive steps made, even for those of us who would have lost coverage under Obamacare.
The ACA is not perfect and needs work. But some replacement plan drafted in a matter of weeks cannot begin to address the complex issues facing our healthcare system.

This post is not intended to be a political post. I am not on either side of this debate...I was unwillingly thrust into the middle. My purpose is simply to share my story. The media has been saturated lately with people who have various disabilities speaking out in support of Obamacare and stories of children who will be left without essential coverage should the ACA be repealed. My purpose is to draw attention to those of us who fell on the wrong side of Obamacare...but still can't support the AHCA or BCRA or whatever is the latest proposal.

The unfortunate reality is that there will always be someone on the "wrong side" of whatever happens. Our voices are no less valid because we are the minority. Our fears are just as valid as the fears of millions facing losing coverage. They are scared because they can see what could be their reality should the ACA be repealed. Some of us are scared because we are already living with that reality under the current healthcare system and are desperate for a lifeline.

There is no and will never be a perfect solution. My experience with Obamacare and the ACA was both potentially devastating and equally life saving. Whatever legislation comes next could be similar. Of course I hope that whenever the dust finally settles, I end up benefiting from whatever legislation is put into place. We ALL do. Let's all come together and at least agree on that. And it is scary to be facing an unknown future being determined by people who are far removed from the front lines of these healthcare issues. And for those of us on the front lines, we can feel helpless to do anything in a debate that is effectively determining the future of our disease progression or the extent of disability or quality of life.

This blog has never been for anything more than sharing my story and experiences with mast cell disease. This is another piece of that story whether I like it or not. Healthcare has already been a huge part of my life, and while I've definitely had my share of going 10 rounds with my insurance company, the fact that I have the coverage that I do is what has kept me alive. This is an incredibly sensitive topic, and I know that. I am not claiming to have any answers or solutions. I honestly hoped I could let things play out and not feel the need to post anything...but then I realized that I couldn't do that. In the midst of an increasingly polarizing debate, I have found myself in a unique position with one foot on each side of this issue. That is why I ultimately chose to post this. Because I use this blog to share my life with mast cell disease, and this has been and will continue to be a huge part of my story. 


  1. Kylene - Sorry that you're suffering with Mast Cell disease and health insurance issues. You have posited both sides of ACA (also known as Obamacare) argument, but I believe those of use with chronic diseases that are not well known to the medical profession and who must rely on specialists are better off with ACA. Thank you for blogging.

    1. I do recognize that most people living with rare conditions have benefited from Obamacare policies through the ACA. I acknowledged that in this post. The reason I shared this post was to remind people that even when MOST benefit from something there are still people who don't. Our situation should not be ignored simply because we are not in the majority. I hope that the healthcare situation can move beyond a political argument and actual focus on the issues that need addressed! Probably wishful thinking, but I'm still hoping! =)

    2. Unfortunately, Obamacare was never fully realized due to the Republicans vetoing much that was good about it. Hopefully, once we get some caring people back in our government we will have a healthcare system that makes sure everyone has equal access.