Friday, April 27, 2012

My Healthcare Rant

I rarely get political here for a lot of reasons, partly because I’d rather keep it fun and about pop culture or personal and about my son and my life, but mostly, when I get political, my arguments tend to devolve into rants which then devolve into verbal poo flinging.

(The first video I’ve successfully embedded on this site and its of chimpanzees flinging actual poop. You’re Welcome!)

I’m going to try and get a little political here today anyway. You ready for it? Have you heard of Indies Unite For Joshua? Or how about Rock Star Ronan? Or have you ever done a search on Indiesgogo for health related concerns? Wanna know what they all have in common? They all involve families with sick children seeking outside help because the state of our health care system would only do so much for them if it did anything at all. For those fundraisers out there that I’ve mentioned there’s probably another hundred out there that I don’t know about or haven’t heard of yet. And there’s probably hundreds more families that are in need that have been shifted by their insurance or are having to foot the bill because they don’t have insurance that haven’t taken to the Internet for help yet and are probably mired in a sea of bills and healthcare woes that feel lost in a sea of hopelessness. Why?

Because the state of healthcare in this country is broken, period end stop. We, as a society need to fix it, period end stop. We need to come up with a better system because the system we are using is not working any more, especially for the people who need it most, period end stop. It is broken on so many myriad levels, many of which I am aware of personally to the point that I don’t even know where to begin. So I’ll start with me, and what I’ve had to do to make the healthcare system work for me, a person with reasonably good insurance.

I can remember a particularly bad day a few weeks after Ukiah was born and we’d just brought him home. It was the day after he’d had what I learned later was a respiratory arrest. I was rushing around with him to various appointments and specialists to figure out what was wrong. I’d just found out they we were going to have to readmit him to The Children’s Hospital. On the way home to pick up Chris so that we as a family could go to Children’s and get him readmitted what was I doing? Spending that time on the phone with his insurance because we had the wrong network or something or other and if we did get him readmitted, we may have to pay for the whole thing out of pocket and the appointments I did have that day? Weren’t covered. I should not have had to worry about this, like at all. What I should have gotten was a phone call from the insurance saying, you know what? You have a special needs child and you are going through a lot and he’s getting readmitted to the hospital because his health care problems are escalating and don’t worry about it. But I was worried about it, amongst the Nine million other things I was worried about. Because the system is broken, Period End Stop.

And that’s just me. I can think of a myriad of families I’ve met through my time taking care Ukiah who haven’t had it so good, who, by the very nature of our healthcare system being broken might have been forced into the situation they are now in. There are stories I’ve been told of being dicked by hospitals who were in turn being given the run around by a person’s insurance that may have caused the very nature of their child’s brain injury in the first place. We should have not still have a healthcare system that is causing the very injuries it is trying to help solve. Because the system is broken, Period End Stop.

I can think of families in the Children’s Hospital NICU with extremely sick children who are getting the best care the facility can manage, but because they don’t have insurance or are reliant on state and federal programs, are unsure of how they are going to get the care that child needs. This should not be. The only thing they should have to manage is worrying that their child makes it through the night or gets past a surgery they just received. But the very nature of where health care is right now means they can’t just worry about their child, that they have worry about this too. Because the system is broken, Period End Stop.

I also know that those facilities that are providing the best care they can manage are struggling to provide that care, because of the way the insurance pays for that care and the way federal and state programs pay for them mean they are short changed and are struggling to pay for the doctors, nurses, staff, and state of the art equipment and programs in their facilities. My local pharmacy is currently holding a fundraiser for our Children’s Hospital because it could use the help. Because the system is broken, Period End Stop.

Those nurses and healthcare providers working for those facilities are striking periodically because they in turn are not getting what they need (usually the strikes are based on worker health insurance benefits) in order to make ends meet. I have seen nurses who I know personally, who have provided excellent care for my son at that very Children’s hospital go on strike because they don’t have the insurance benefits and other health benefits they need in order to take care of their own families. Because the hospitals can’t afford to pay for those benefits and everything because they aren’t getting what they need from insurance and state and federally run programs so they are in turn having trouble paying for the benefits of their own health care workers. This should not be, but it is. BECAUSE THE NATURE OF OR HEALTHCARE SYSTEM IN THIS COUNTRY IS BROKEN! PERIOD! END STOP!

To take it a step further, and I don’t want to reveal too much, but I work in an industry that is directly impacted by a number of doctors who have private practices that may have to close their doors in areas that really need the care because they can’t afford to run a practice. BECAUSE THE NATURE OF OR HEALTHCARE SYSTEM IN THIS COUNTRY IS BROKEN! PERIOD! END STOP!

And now I’d like to bring it around full circle. Two weeks before my son passed away, George Mark House had to call me and inform me that they could no longer take patients and were closing their doors indefinitely, because the very nature of what they do meant they couldn’t get the type of payments from Insurance and federally and state run healthcare programs to keep their doors open. Because people, insurance, THE HEALTHCARE SYSTEM doesn’t understand palliative pediatric care or why a wonderful organization who is helping kids and their families not just with end of life care but with overall care who are JUST LIKE ME needs to be paid for by the healthcare system BECAUSE THE SYSTEM IS BROKEN. My son died at home because George Mark House’s Doors couldn’t remain open and we couldn’t bear putting him back into the hospital where he may or may not have made it. If the system wasn’t broken? If George Mark House could get the funding it deserved and its doors remained open? Maybe, maybe not. But we’ll never know. Because the system is broken, and my heart is broken along with it, into a million pieces because he’s no longer with us.

Right now, families like mine are taking to the internet, are taking to the community, are suffering in silence and don’t know where to turn to try and make ends meet when their healthcare and financial concerns get the better of them. And these aren’t just poor families, or families living off the system, these are families that have insurance, have good paying jobs, but that still isn’t enough. Take Indies Unite For Joshua. This family has insurance, but because of the nature of their son’s health problems, insurance isn’t paying for everything. All they are asking for is 10,000 dollars to cover what insurance isn’t and the rest they raise they are giving to Leukemia research. They shouldn’t have to do this. They are asking for what they need to make ends meet, nothing more. All Maxwell and his family should have to worry about is his son’s health. But that just isn’t the case. Good families all over this nation of ours are in similar situations or different situations and they still need help.

So now you know that it is broken. You have concrete proof in front of you, from me slapping you in the face with it. If you looked hard enough you’d have enough material witnesses to keep driving my point home. But knowing that it’s broken isn’t enough. How do we fix it? Well unfortunately I don’t know that answer. What should we be asking is how did it get broken in the first place? Was it because of a handful of people abusing the system making it harder on the normal folks who don’t abuse the system to use it properly? That’s probably part of it. Is it that the business of taking care of people became just that, a business, that healthcare became less about dealing with human health and more about dealing with nickels and dimes? That’s there too I’m sure. If we could completely identify the numerous ways in which it has fractured itself, we might be able to identify ways that we can fix it.

I’m not versed enough in Obama’s National Healthcare mandate plan to know for sure if it can triage the multiple fractures in our system, but I feel it’s a solid starting point that is trying to provide equal healthcare rights for all people, and that is huge. 

I was listening to NPR the other day and they were discussing the arguments for and against the healthcare mandate. Somewhere in the discussion, there was a metaphor made that government mandating a national healthcare policy for all people was the equivalent of telling everyone that we had to eat our broccoli. This is dumbing the argument down to its simplest statement, that the government is trying to tell us all what to do. What I think is really happening is that the government is trying to help us do right by ourselves. By mandating a healthcare plan, the government is telling the nation that every single child who is sitting in a NICU right now is worth working for, that their life is worth it and that they deserve the same care my child got without their parents worrying where the money to care for this child, to protect this child is coming from. And from my perspective, that is huge! A game changer actually.

But do I think that will be enough? Probably not. Fixing all the tiny fractures in the healthcare system means a million different people thinking about the million different choices they make regarding their health, everyone’s health and how they interface with the healthcare system, and that? Ain’t happening overnight. But it is doable and more to the point it is worth doing, for you, for me, for my daughter, for the myriad of children not born who deserve a brighter tomorrow.

But instead of thinking into the abstract future, think about the present. Think about sending ten bucks to George Mark House. Think about telling somebody else about the good things they are doing why they should stay open and how we need to create a future in which their doors stay open for as long as possible. Think about Josh, and his cancer and how, by clearing out his fundraiser as soon as possible that’s less days he and his family have to worry about money-related healthcare concerns and more days they can focus on Josh’s health. Think about finding five more fundraisers just like it and helping them achieve the monetary goals they need and get back to health concerns they should be worrying about. It’s not near where we should be but it is headed in the right direction.

Thank You for reading.


Eden Baylee said...

Firstly, congratulations on posting your first video! Yay! I hope you know how saddened I am you lost your young son - I cannot imagine, and I appreciate your writing about it here. It must be difficult to relive the pain.

I'm Canadian and have socialized healthcare. When I got sick and went through chemo, I was not working, but I didn't have to worry about medical expenses. That was a huge weight I didn't have to bear.

Our system is not perfect, but by comparison to what's happening in the US, I would say it's preferable. Going bankrupt to get well is not a solution, and neither is forgoing life-saving treatment because you cannot afford it.

Indies Unite for Joshua was an opportunity to pool resources using available tools to help a friend. I consider Max a good one, and he was in need. Raising money, awareness, and hope for him and his family does not demand a lot. In the scheme of life, we all do what we can.

Appreciate your post, hon. xox


The Bloody Munchkin said...

Thanks Eden for reading and commenting. "Our system is not perfect, but by comparison to what's happening in the US, I would say it's preferable. Going bankrupt to get well is not a solution, and neither is forgoing life-saving treatment because you cannot afford it."

Well said. I couldn't agree more. #Indiesunite4Joshua!

Jester Queen said...

And what can be more broken than an industry that trains its 'professionals' to be able to call a parent in your position and say 'you may not be covered' What those employees must have to listen to in order to become desensitized to exactly your situation. Because seriously, when payments become more important than people, evil and banality and Hannah Arendt and all those nasty things come to mind. Your point is clear and correct. The system is broken. Period. End stop.

The Bloody Munchkin said...

Yes, Jester Queen, you do experience a lot of that. Also something I experienced a lot of was insurance liaisons, people who were on site, watching your child suffer and still trying to make the determination if what was happening to that child was going to get covered or not. How can you look at a child and tell the parents their insurance isn't covering the care they should be recieving. It's ludicrous.