Wednesday, March 18, 2009

Hemophilia and Me

I was very fortunate to be invited to be the keynote speaker at last week-end's Hemophilia Federation of America annual symposium in Indianapolis. I gave my favorite speech -- why chronic illness is a civil rights issue. I've given different versions of this speech before, but never has it been received with such enthusiasm. I was interrupted several times with applause, and a whole line of people wanted to speak with me afterwards. It was very gratifying.

But what's most important is that there are patients out there who want to hear this message, who want to be more activist, who support the ideas of universal health care and redefining the notion of "disability" so it's clear that invisible chronic illnesses "count" under the law. It truly was exciting.

Before I went to the symposium, I did a lot of reading about hemophilia. I had no idea that there were so many kinds of bleeding disorders, that they affect mostly men (although women are carriers of the gene), and that HALF of the hemophiliacs in America were infected with HIV in the 1980s because the blood supply was tainted. Many have hepatitis C, as well.

In addition, factor that is needed to stop hemophiliacs from bleeding out costs about $250,000 per year. Imagine having an insurance policy that has a $1 million lifetime cap when your health care costs $250,000 per year! What do people do? Change jobs every four years so they can get new insurance? Here's yet another really good reason why we need universal health care that would not have a lifetime cap.

I'm not sure why the patients at the HFA symposium were so exceptionally interested in righting the wrongs that are built into our current system. When I speak to other patient groups -- for example, patients with Crohn's disease and ulcerative colitis -- I don't get the same sort of enthusiasm for changing the world. Perhaps one reason is that hemophiliacs know what their disease comes from and how to treat it, and paying for it is their major concern, whereas Crohn's and colitis patients want a cure and are less concerned with civil rights? I honestly don't know. All I can say is that it was an awful lot of fun to speak from the heart to a group of patients who was so hungry for this message.

I suppose the challenge, then, is to get other patients more enthused, as well. We need to fix our broken health care system. We can't have people skipping their medications because of irrational limitations and funding restrictions. Patients who don't get treated just get sicker, ending up in emergency rooms that cost the taxpayers way more money than it would cost to provide these patients with the treatment they need in the first place. The road-blocks to care have to be cleared out of the way.

For example, I am working with a patient who is on Medicaid in New York. She just found out the hard way that she's limited to 40 dispensings a year from her pharmacy. There are similar limits on labs and doctor visits. These arbitrary limits can be waived, but the doctor has to fill out a form that is not available to anybody other than doctors, and only to doctors if they call and ask for a blank form, which can only be mailed, not faxed. Then the doctor fills out the form and has to mail it back -- again, the State won't accept a fax. And then it takes 3-4 weeks before the request for an exception is acted upon. So all in all, it can take at least a month before the arbitrary limit on services is waived -- and that process has to be done for pharmacy, doctor visits, labs -- every segment of the health care provider community. In the meantime, we have had to beg with the pharmacy to go through the steps for getting an override. Why on earth do these limits exist, especially when the limits are set without any concern for the patient's needs? This particular patient sees 8 doctors and has at least four chronic illnesses. Of course, she will fill more than 40 prescriptions in a year!

These sorts of hurdles are oppressive, and when we saddle people who are too sick to navigate such complexities with these sorts of obstacles, they tend to recoil and give up. We can't let that happen.

Instead of getting depressed, we have to get patients angry. Perhaps that's the answer -- hemophiliacs deal with so many insurmountable obstacles that they are angry; patients with Crohn's and ulcerative colitis have obstacles sort of sneak up on them as they lose a job or a child ages out of her parent's health insurance or their doctor prescribes a medication their insurance won't cover. The calls I get from Crohn's and colitis patients are riddled with fear and anxiety, but not yet anger. As insurers have cut back on coverage, as the price of insurance has sky-rocketed, Crohn's and colitis patients are just starting to get how all of this affects them. Indeed, the median income of hemophiliacs is far lower than that of patients with Crohn's and colitis. So it may just be that Crohn's and colitis patients haven't been as deeply affected as hemophiliacs -- yet.

But the time is coming, surely, when everybody with a chronic illness sees how the current system is failing them. A very smart person once told me that depression is anger turned inwards. So maybe the key for those of us who want to mobilize the patient community is to find ways to turn that anger outwards, where it can do some good. I do speak with many patients every day who are so depressed. Maybe I have to work harder to convert their depression to anger, which then will mobilize them to do whatever they can to work to change the system.

I surely don't have all of the answers, but with more patients like the ones I met this past week-end, I'm convinced that we can and will force the system to change. I just hope we do it soon. Jennifer


  1. Thank you again for giving us hope. I am the mom of two of the guys and sat in your seminar. What a blessing we have to have power in numbers even if the numbers are small. We have passion and power. Again, thank you for sharing your time and talent to empower so many!!!

    Amy Maeder
    Atlantic, Iowa

  2. And your trip meant an awful lot to two Hoosiers as well. Thank you for everything & the opportunity to hug you at last.