July 6, 2004

I usually publish a weekly article about headaches or Migraine disease. This week is different. Why? Because I'm ticked. I'm really ticked! I want to share it with you because I believe we have the power to do something about it.

A woman recently posted this to my forum on About.com:

I have fibromyalgia, chronic fatigue syndrome, chronic migraines, bipolar and severe irritable bowel syndrome. I have been unable to work for 2 years now. I am also the parent of a child with Asperger's, bipolar and severe ADHD, who wears me out. My husband is a saint. We've been through bankruptcy, exhausted our savings, now we're on the verge of losing our house. All because of out of control medical bills. It really sucks when you are having to choose between food and medicine. On paper, we don't qualify for anything, I've tried, I don't understand how we are considered high income when we struggle to pay the bills and buy food. The only good part is that we are losing weight.

Now our only option left is for us to get divorced, so that my daughter and I can go onto Medicaid. Hopefully that will save the house, I'm not sure. We're asking for "loss mitigation" to stop the foreclosure, something I'm not very familiar with.

I just needed to vent. I'm angry, I'm scared, I'm miserable. I'm trying to tell myself that it is just a piece of paper, that it doesn't have to change our relationship, but it bothers me. I'm trying to get my head wrapped around the thought of living somewhere else if it should come to that and I hate it. This house has become my sanctuary, my safe haven, I don't know if I can stand to lose it.

Now, what is wrong with this picture? We have a loving married couple. One would love to work, but is too ill. The other is working but doesn't make enough to provide medical care for his family. So, their only way to get medical care is to get a divorce?! To maybe lose their home? This is beyond ridiculous, beyond inane.

What is this? This is a symptom of a seriously ill society and a very broken system! It's one of many symptoms we can look at every day in our forums. Here are some others:

• Insurance companies have too much say in our health care decisions:
  • They are getting away with limiting the number of doses of triptans Migraineurs and cluster headache sufferers can get per month. They don't even have to check with the patient's doctor; they just change the prescription. This is practicing medicine without a license! If you or I changed a prescription, we'd be in jail.
  • Insurance companies can tell our doctors how many days we can be hospitalized. Hello? When did they examine the patient?
  • Insurance companies can tell someone who needs a particular medication to try and fail three other less expensive medications before they'll pay for the one their doctor feels is best for them.
  • Insurance companies can deny referral to a headache and Migraine specialist until they feel the patient has exhausted all resources at lower levels. Does anyone keep track of the cost of this -- not only in dollars, but in hours and days of pain?
• There are too few resources for people who don't have medical insurance through their employers. Private insurance is prohibitively expensive and often has onerous pre-existing condition clauses.
• The cost of medications is out of control. Honestly, I don't know if the problem is pharmaceutical companies trying to make big profits, the high cost of research, the high cost of doing business or something else. What I do know is that even people with insurance are going without medications or taking less than prescribed because of the cost of the medications, because insurance companies won't pay for the more expensive medications or because of the cost of the insurance copayments.
• Too many people in pain are being treated as if they're criminals. I know people who have gone to the emergency room three days into a horrid Migraine only to be accused of faking it to get drugs and turned away without treatment. May those so-called health care providers someday know that pain.
• Because of the abuse of prescription drugs and the media hysteria over it, doctors are reluctant to prescribe adequate medications, even to patients they've known and trusted for years. How has this law enforcement problem been allowed to become a health care problem?

I could go on, but I'll leave you to add to the list. I actually have a point to make. Do you remember the election campaign in 2000? How many candidates promised us a Patient's Bill of Rights? Did we ever get it? No. Some time ago, I told you about H.R. 1863, the National Pain Care Policy Act of 2003. It's still sitting in Committee in the House of Representatives. Still. It can't become law that way. I asked you to write letters. I wrote letters. I made phone calls. One of those phone calls was to the office of my representative, Alan Mollohan. I asked that he become a cosponsor of the bill and help get it out of committee. A few weeks later, I got a very polite little letter back from him. Someone on his staff had checked the bill. He told me that it was in committee, that he wasn't on any of the committees, so he couldn't help me. Well, that wasn't what I told them I expected him to do. I expected him to become a cosponsor. Guess what, folks. I keep score! When Congressman Mollohan comes up for reelection, I will actively campaign for his opponent.

It's beyond time we reminded our elected officials that our government was intended to be a government "of the people, by the people, and for the people." We do that with our vote and by communicating our desires to our elected officials. When they don't do what we wish, we ultimately express our displeasure by not voting to keep them in office. Please don't forget that phrase means that each of us, as "the people" has a responsibility. It's a big election year, folks. Please make your votes count. If you don't know where all of your candidates stand on the issues dear to you, now is the time to find out.

The true power in the United States was intended to remain in the hands of the people through the election process. We're living in a seriously ill society with very broken systems. Who else is ticked off?

PS: For a much more entertaining, yet quite inspirational, version of the "we the people" speech, rent the Goldie Hawn movie "Protocol." It's a fun movie, and it will really get you into the spirit.