For a short week, this one has been pretty long. A 504 meeting with a school, 3 appeal hearings in one week, and a very critical meeting this morning. I have to say that, although I know I am doing the best I can, and that we are helping a lot of people make the best arguments possible, the whole David and Goliath thing is exhausting. The fact is that there simply is tragedy in the world for which there are no easy answers. It shouldn't be that, even though you have insurance, you have to raise money through bake sales and fundraisers to get the only medicine that will keep your kids alive. Being sick is bad enough, but when we leave people to fend for themselves, it's just brutal.
A new class of cancer drugs that may be less toxic. Of course, because it's experimental, the only way you can get it is by enrolling in a clinical trial. No insurance will cover it until (at least) it's FDA approved. Sorry -- I'm a little fixated on what insurance will and won't cover right now. I have a new case -- two little kids who need a drug that's not FDA approved, but for which they have special dispensation from the FDA because they will die without it. Insurance covered it for a year -- and then stopped -- and said oops! We made a mistake and now we want all our money back because we never should have covered it in the first place. Dying kids and a $200,000 debt all with the stroke of a pen. Unless we figure out how to get these drugs to market and then to patients in some sort of affordable way, the research is meaningless for all but the very rich.
Why does it take getting the LA Times involved to get insurance to act rationally? The denial of coverage of an MRI NOT because it wasn't medically necessary, but because the patient didn't get prior authorization. But the surgery was authorized, and the MRI was standard of care pre-op. Aetna only admitted that this makes no sense AFTER the LA Times contacted them. What about all the patients who can't get David Lazarus's attention -- or mine, for that matter?
The World Health Organization had an idea. Make all member countries contribute 0.01% of their GDP to a fund for research into rare diseases. Guess who tanked this idea? Your very own US of A. We don't stress over the people who die NOT because treatment didn't exist, but because patients can't access it -- because the clinical trials are too expensive to make it worth a pharmaceutical company's while to do the research when so few people are involved; because the FDA won't approve it without the expensive clinical trials; because insurance won't cover it without the FDA approval. The hidden sick -- all of those who go without care and die, invisibly.
Indeed, the Romney campaign is making a big deal about Ann Romney's MS and the challenges she faces as a person with a chronic illness -- but they don't talk about the real horror that hits MS patients who can't pay for their medication, even if they have insurance. You really can't understand what it's like to live with chronic illness if you don't look at what it does to a family's finances. No savings, no retirement -- every penny going to paying for medical care. The burden on people with chronic illnesses is extraordinary. None of us asked to be sick. But our illness is about much more than our physical state. It's about money and insurance and laws and a public that would prefer not to focus on what our lives are like. They say Romney is talking about this to humanize himself. Those of us who live with chronic illness know that what he's really doing is romanticizing what it's like to live with chronic illness. Please, Mr. Romney, don't pretend to speak for me while you are opposing health reform and supporting a private market that makes it increasingly difficult to live through being sick.
Another installment from the young cancer patient who's blogging through her bone marrow transplant. So brave. Good thing she has insurance or we'd be hearing about her finances on top of all the horror she's enduring. Indeed, if she didn't have financial means to get her treatment, she wouldn't be blogging like she is -- she'd be hiding, ashamed, freaking out, terrified, dying. I begin to think that anybody who calls me for a reason other than needing care that they can't afford, because either they don't have insurance or their insurance won't cover it, is really privileged. I wonder if this young woman knows how lucky she is. At least she can get the treatment she needs to save her life.
And if Congress was actually going to do something, I'm really glad (not) that they spent their energy trying to ban sex-selective abortion. Because sex selective abortion is such a big problem in America (not). I mean, really, what's the most important health issue facing Americans today? Sex selective abortion, definitely (not). Ugh. At least a majority of the House realized the folly of this.
Meanwhile, pundits say Medicare has to change to a voucher system to keep it affordable, which inevitably increases the amount seniors and the disabled will have to pay for their health care. Sure, make it worse for us, why don't you?
It's not like we patients don't try to show people what it's like to live inside a broken body. A television show on the Sundance Channel called Push Girls to help us all to look at people with disabilities differently. But who watches? And even more importantly, will they show the underbelly -- the financial ruin, the job discrimination, the being shunned by family and friends? I'm all for happy stories -- but I'm not for stories that only tell the part of the story that people are prepared to hear. If we don't talk about what it's like to live with chronic illness -- really, not Hollywood style -- and if we don't find some way to force our fellow Americans to see us and either help us or at least acknowledge their refusal to do so, nothing changes.
And so we have a Supreme Court poised to go along with a horribly misinformed American public that doesn't like health reform's individual mandate because they don't understand that what hangs in the balance is insurance coverage of people with pre-existing conditions -- or they don't care. I don't know how I will talk myself through that loss if that's what comes to pass. For goodness sake -- we are suffering enough! We are in pain. We have unspeakable fatigue. We don't go one single day without being confronted with some hard reality related to our illness. And we can't buy individual insurance in most states for any amount of money. Isn't America about lifting up those less fortunate? When did that go out the window?
I'm scared of what happens in the Supreme Court. I'm scared of the next phone call, the next horror story. I'm scared of being the only chance a person has to have a life, or even to live at all. Little kids, for goodness sake. But mostly, I'm so, so sad. I grieve the loss of the ideals that I thought made America special. I grieve the loss of optimism and hope. To see what I see all day every day and not feel this way, at least some of the time, is impossible. To turn away and pretend that these tragedies don't exist ought to be at least equally impossible.
And so I will take the week-end to rest and try to think more pleasant thoughts so I have the energy and the confidence to start all over again on Monday. Jennifer