The Sick Ministering to the Sick

I have always felt that one of the reasons I am good at advocating for other patients is that I, myself, am a patient, so I "get it." Many of our clients have expressed that same sentiment. Indeed, it is not unusual for a patient with Crohn's disease to burst into tears when I tell them that they don't have to explain their symptoms to me because I know them all too well.

However, as I have struggled to remain sitting upright over the last 2 weeks, and found myself posting here less often than I should, I have been reminded of my weakness as a patient advocate: I'm sick.

This time, I needed a root canal, which then abscessed very badly, requiring that I take antibiotics that absolutely trash my gut and make me so tired I could cry. I've actually turned off my computer at 5 pm for the last several days -- something that is unheard of around here. I've managed to do the work that has had to be done, but I haven't had it in me to do anything "extra." Extra means anything from posting here to fundraising -- which really can't be counted as "extra" since it's vital to our existence. But I just haven't had it in me to focus.

Still, I know what I'm doing is better than nothing. We filed an insurance appeal on behalf of a baby who has a horrible digestive problem, whose doctors tried everything, and who needed a drug that was not normally prescribed for this use. The dad is a federal employee, so we had to file the appeal with the U.S. Office of Policy Management, which handles insurance appeals for federal employees. We learned at the end of last week that we won -- and that was a very good thing.

There's a huge public hearing at the legislature on Monday. I ought to go there at 6 am, get on line to sign up to testify, and stay all day and into the night to testify on at least three bills. One would create more "guaranteed issue" insurance plans in Connecticut -- plans that people could get even with a pre-existing condition as long as there's not a long lapse between their previous coverage and the new coverage. That's so important to the chronically ill since we all have pre-existing conditions. Another would start to direct the aged, blind and disabled who are eligible for both Medicaid and Medicare into Medicaid HMOs, which, it turns out, are more expensive than traditional Medicaid, and actually provide less care. Not good.

The third and most important is the Universal Health Care Foundation of Connecticut's proposal for universal health care (for you in Connecticut, it's Raised Bill 6600). What's remarkable is that they actually got chronic illness management right. They would set up a patient advisory panel that would help create and guide "medical homes" that would coordinate care, promote wellness, and manage chronic illness. These medical homes would see health care as extending beyond medical settings, to home and school and work. It is a truly patient-driven system. Talk about getting it -- although I suspect my constant harping over the last two years had far less to do with the excellence of this proposal than the knowledge and experience of the people who drafted the legislation, I could not help but feel downright joyous when I read the draft legislation. If only it would pass in its current form.

So clearly, I should go testify on these Bills. But I just can't bear the thought of spending 15 hours at the Capitol on Monday. I just don't have it in me. So I'm submitting written testimony. A compromise, at best, but better than nothing, I hope.

I wish I never had to make these kinds of choices. Really, at the moment, I belong in bed, not sitting at my computer writing this or doing anything else, for that matter. I'd be really depressed if I didn't know that today's the last day of these antibiotics, so I should start to feel better by the beginning of next week -- I hope.

I guess I think that, whatever I manage to do for the patients who need our help is better than nothing. But does the benefit that flows to our clients from the fact that I'm sick -- the fact that I "get it" -- outweigh the fact that I have to make these sorts of compromises when I'm not feeling well? I guess I can only say I sure hope so. Jennifer