Insurance

Today I asked my husband and his brilliant mind to write about health insurance. It's a post i struggled to write because it's emotional for me. Shelby is always good at translating Nicole and also getting out what he needs said as eloquently as possible. I'm not saying I agree 100% with all of his opinions although I think this is one instance our shared experience leads us to the same conclusions. Neither of us want to turn this blog into a political argument but we do feel our voice is getting lost in the anger of 2016 politics. Take it away, babe...
It is going to be a long post so if you don't feel like reading here is the overview, it is about health care, I feel both parties have it wrong, and I hate the fact that 10 sec sound bites are the "solution." It is a complex issue that will never be solved with rhetoric. This post is from my view point navigating the system with a kid with a rare terminal illness so every one's mileage will vary. That being said the long form is below if you decide to read it.

First I want to state I have always had health insurance, I have taken jobs to get better insurance, turned down job offers because the insurance was bad, I have switched jobs to get better insurance while taking pay cuts to do so. So lets get this out of the way right now, I have never needed government insurance and I have always paid for the best plan I could get from my employer.

That being said Obama-care is a mixed bag of good and bad, and when I hear candidates talking about replacing it with a single payer system like the UK or Canada, or repealing it without even a hint of a real definition of how they plan to make insurance work for the 21st century, or just leave what we have as is I can't help but scream.

As I see if the biggest issue with Obama-care is it does nothing to address the expenses of the system. The health care system is expensive because it is a false economy, where the "retail" prices are basically the same as a cars sticker price, no one actually pays those prices. On top of that, insurance companies and health providers have offices that do nothing but submit, reject, and resubmit claims a million times over and over. The overhead for this process has got to be immense. Add on top of that the fact that the face of medicine is changing. Mapping the human genome in the 90s/2000s has enabled us to think about medicine in a different way, in a may that more directly addresses illness with boutique medicines that address illnesses unique to you. The thing is these treatments by definition can't be used by everyone so the common $1 billion expense of bringing a drug from R&D to your pharmacy is being absorbed by a smaller customer base, so the dosage costs are going to be insane if the medicine is approved. There is no way giving people free check-ups solves this problem. On top of that Obama-care limits how much we can set aside for health care, limits on FSA contributions, limits on what you can spend that FSA money on, limits on how good the insurance can be, these limits seem to fly in the face of what this law is supposed to be doing to being with.

On the other side of the coin Obama-care makes some great changes to the system. Elimination of annual and lifetime maximums is a huge one. For most people this is a non-issue but with lifetime maximums for the sickest of sick, the limit basically guaranteed a death sentence to those people at the time when they need the care most and the funds dry up. Pre-existing condition coverage is another big one, because it could strike anyone especially during an economic downturn where jobs are hard to find, all it takes is a 1 day lapse in coverage and boom you can no longer get that diabetes medicine you have been taking for years. Another is coverage for clinical trials, before Obama-care if you were involved in a FDA clinical trial for a new medicine insurance companies could refuse to pay for any services that they could find even a remote possibility was caused by the experimental drug, leaving the patient stuck between the manufacture doing the research and the insurance company both blaming each other while the patient is on the hook for the non-negotiated prices.

So what does all of this stuff mean? Everyone of the things above directly effects my son both good and bad. For instance he takes a steroid to slow the progression of his muscular dystrophy, which causes stomach issues, so he needs Zantac. His dosage of Zantac is OTC so the insurance doesn't pay it but at the same time I can't use FSA dollars to buy it because Obama-Care made it ineligible, yet i can use FSA dollars to buy sunscreen. I max out my FSA each year because in one clinic visit he may see 7 or more specialists, they will recommend custom built carbon fiber leg braces, and special x-rays and tests and I can't even set aside enough FSA dollars to cover all of our deductibles, co-insurance, and prescriptions that we will pay in a calendar year. There is great work being done for treatments for DMD, but these treatments are gene specific so a medicine might serve 5% of a rare disease that only effects 1 in 6000 kids. The companies estimate a single patients annual dosage of this medicine to be $100000 a year once approved for a maintenance medicine. And frankly I cant really blame these companies as they are already nearly a billion dollars in the hole on R&D, and the drug may not even be approved (BTW these are small specialty drug companies not the often villianized "big pharma"). If lifetime and annual maximums still existed he would be completely out of luck if one of these drugs is approved. The drugs change how the body processes specific pieces of DNA so if insurance was allowed to deny for possible trial usage any aliment could be linked to a drug that works at such a low level and thus deny coverage for the clinical trial he is waiting to get on. And all of this may have been for not because 6 months after he was diagnosed I was laid off, and I found myself scrambling to find a job and paying Cobra fees so that we didn't become uninsured and all of this becomes a pre-existing condition and thus uncovered.

So at the end of the day I don't see one politician running for office that wants to make this situation better. In some ways Obamacare helps while in other ways it hurts, but the net increases i think are better, so I cringe when I hear republicans advocating throwing the baby out with the bath water. At the same time the Democrats want to bash pharmaceutical companies for expensive drugs without acknowledging that as medicine becomes more individually specialized the R&D costs are going to go up, and when a new medicine is a billion dollar gamble we are ensuring that only "Big Pharma" can afford to take that bet. If we want real health care reform, it isn't copying the system from the UK they created after WWII, or more check-ups, or letting insurance companies sell across state line, it is looking at the system as a whole and saying what do we have and where is it going and how do we create a system where costs are low but fair, and built for the future, while providing the services the people of this nation need. It isn't a simple solution and pretending it is helps no one.