12 December 2008

Health care and poverty

I find that I have to post an update to my last post, to clarify our situation. I have gotten three responses so far, one was an offer of financial help to get treatment, one was encouragement to find a way to get help, and the third sounded like a scolding for not valuing my husband's life enough.

After receiving the offer of a check from my friend in Europe, I was in tears from her generosity. I started calling around to find out what the total cost would be. When I called the local clinic/hospital's billing office for prices, she told me that they have multiple programs to help those without insurance. The first is a 30% uninsured discount. Secondly, they will work with you to come up with an affordable 0% interest payment plan. Thirdly, she sent me paperwork for up to a 100% income-based discount. She told me there was no need to let finances get in the way of getting help.

But I still have another reason for hesitating to go to doctors. I don't trust them as far as I can throw them. The medical system in the United States is so broken due to corruption. I truly believe that the privatization of health care should be considered a crime against humanity. No one should ever be forced to choose between going to the doctor for a major illness like this and getting warm boots and snow pants for their children for the winter. Or, if it is expensive enough, food to feed their kids. The question is not, "How much is your husband's life worth?", but, "Why is anyone allowed to put a price on human life like insurance companies and drug companies are?"

The medical system has fought against diabetes since the dawn of written history. Anthropologists use diabetes as a marker of civilization. It should therefore be obvious that going to the doctor will not take care of the diabetes. So why go to the doctor then? I do not believe in going to the doctor for treatment of disease. Doctors cannot cure. Doctors can diagnose and can monitor diseases, but they cannot cure them. Healing is done by the body, not by drugs. The only way to truly cure any disease is through proper nutrition (which varies widely depending on whom you talk to) and a careful, deliberate lifestyle. I am willing to go to the doctor for injuries, diagnoses and monitoring, but I will not take their drugs.

Back to the comment though about valuing my husband's life. I have pretty much come to the conclusion that most people do not truly understand what it is like to live in poverty. To ever wonder where they will get groceries to feed their children next week. To be homeless. Remarkably, I was homeless when I first met the commenter nearly 20 years ago. Perhaps he didn't realize I was homeless. Most people have never worried about not having enough money for gas to visit their little girl who lives with her father nearly 100 miles away. These aren't the worries of the average US citizen. But we live these questions a few times a year every year. It is no fun having to call up your daughter to say, "I'm sorry, honey, but I can't come get you this weekend because we have to replace the tires on the car and then I won't be able to get gas, and I don't want us stuck on the side of the road when we run out."

Poverty is alive and well in the United States but most are blind to it. Poverty is what makes us have to choose whether or not we can afford to go to the hospital for a diagnosis of a potentially-fatal disease. It isn't free will, it isn't apathy, it isn't that I don't love my husband with every ounce of my being and don't know how I could live without him. It is that it is a long and complicated and therefore expensive process, one that could very well require surgery (for ancient knee injuries that make it impossible for him to do much physical activity), and that means time lost from work, which means reduced income, which could mean that we have to ask those hard questions again. Doctor or food? What kind of a choice is that? One driven by poverty.

So why don't I get a job? Again, this is a complicated question. At first blush it would seem the answer. First, we have several small children. Daycare costs alone for 4 children, 2 not yet old enough for school, would completely consume all of my potential income and more. A friend and I recently discussed how it might be possible for his wife to stay home with their baby. His baby is about 6 months old or so and he told me that daycare for her is $500 per month. That is one child. Now multiply that by 3 (full time for the two younger, part time for the two older) and that equals $1500 per month. That is more than I can hope to bring home in a paycheck, and is only a little less than my husband brings home. Sure, we could apply for state-funded child care, but that would be an extra $1500 or so burden on the state. Currently, we receive almost $600 in state aid as food stamps. Do you, the taxpayer, really want to replace that with $1500 that the state can't afford since it can't balance its budget?

Secondly, my child support payment would go from $50 per month to about 25% of my take home pay. When I was working full time (which was until 5 years ago) I paid nearly $100 per week in child support. So that brings the cost of my working up to about $1900 per month. Still can't afford it.

Thirdly, when I was working full time, our family life suffered terribly. The children were always cranky about having to go to a sitter, I was angry at society for not paying my husband a living wage and therefore requiring me to work when I wanted nothing more than to stay home with my children and be a mother. To keep the daycare costs down (though not completely eliminated) my husband and I worked separate shifts. That is hell on a marriage. We nearly got divorced. So quality of life is another cost of working away from home, though one that defies a price tag.

We have a plan of action now, one that we worked out after the encouragement from my friends cleared my head so I could think more strategically. I am not letting him go without a fight. Never doubt that.

1 comment:

Jenny said...

I have a half-baked draft of a response to your last post sitting in my email. Lemme paste that, because some of it is germane:

Diabetes is not something to mess around with at all. That said, I really think maybe you're overthinking the carbs thing. Diabetics NEED a certain number of carbs in each meal. For me, I am supposed to have 60 grams of carbs per meal. It's not a huge amount, but it's totally sufficient. I means diced potatoes in my stew. It means a small amount of rice. What I really would strongly urge you to do is to see if there are some free diabetes education classes that you BOTH can go to.

He *needs* to have his a1c checked. This number will help you determine his control in the longrun. He also desperately needs a glucometer. Without these tools, you have no way to gauge how well your meal-planning is going. With the money you will save on soda, you can easily afford a glucometer and supplies. If you can't afford the glucometer, I will buy one wholesale from work and send it to you (I work for a medical supply company as well). These are not negotiable tools. I'm speaking as a diabetic who DETESTS checking blood sugar.

A1c should be under 7.0, and in NH I think the guideline is stricter. Mine currently runs about 6.2, because I have found the combination of eating and exercise that work for my body. But there are things that impact my sugar.

Another thing is that diabetes affects a hell of a lot more than sugar. Mood swings run wild. Your sugar goes crazy high sometimes, crazy low... the sugar issues cause intense irritability -- again, that's something I have more than a small amount of experience with. It causes exhaustion so that you simply can't do anything that you don't have to. Obesity also causes sleep apnea, which I've long been convinced he has -- I know his snore well. It's just like mine. Before I had a CPAP, I couldn't really function. No WAY could I do school time and a half. Exercise? HA! CPAP and sugar control have changed my life.


So there's that. Now, in response to what you said today:

I can understand why you're angry. I have given you my views on the world as it is versus the world as we wish it was, so I won't harp on that. I respectfully disagree with you about drugs. Some drugs are critically necessary for life. Insulin being one of them. If he becomes insulin dependent, he may NEED to take the drug in order to lose enough weight to NOT need to take the drug. I would be really disappointed if a fundamental mistrust of medicine keeps him from taking a medicine he NEEDS to survive. Many other medicines are really just bullshit and I think there IS corruption in medicine. WORKING in medicine, I see it, and am so thankful I work for a painfully ethical man. I'm not sure how you feel about insulin drugs, or about cancer meds, or what have you. That's not really that important right now. What is important is that your husband isn't making the right nutritional and lifestyle choices, and medicines may be the necessary choice to extend his life long enough for him to make those changes.

You are, and have long been, in a most unfortunate circumstance. Whose "fault" it is totally doesn't matter. The facts of current reality are what matter; you have five children, a very modest household income, and a husband who desperately needs help.

Last week a young girl's mother called. The girl has baby teeth that just won't erupt, and she needs a tiny bit of gum surgery, which is done under anesthesia. She wanted to know our fee. $450 an hour. The girl needs 2 hours. The mother just couldn't come up with that. $900 for just ANESTHESIA was a mindboggling amount of money for this woman. But... I talked with our managing partner and we worked it out with her. This happens all the time in medicine. So I'm glad you didn't just say "well, I guess he has to just die", because there ARE options for the intrepid and creative. I'm proud of you.

You sound revved up and ready to rock. But is he? This sounds so similar as to when Bob was sick. Bless his heart. He just wasn't at the point of acceptance and action that *I* was at. I tried to set his limits. In the end, I lost him over it. Your husband, I think, has to 100% buy in, because he WANTS TO and is SELF MOTIVATED. Otherwise, you are fighting against an addiction, basically, and addiction always wins against a family member. The addict has to WANT to change behaviors, and take consistent daily action. I hope you guys have sat down privately to talk about this, so that you have a good sense of him and his heart before all of this work.

You guys are all in my best thoughts, in between the Screaming Heart-Pounding Panic that is school. I definitely don't mean to sound preachy -- I'm in his boat and know a bunch about the topic, that's all!