Assistance, Dubya style

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Medical help is disappearing, and it hits me, hard.

In 1995 I developed full-blown AIDS, and in 1997, the Department of Labor and Industry (L&I, which administers workers’ compensation) accepted that I was HIV-positive due to an “industrial accident”: a medical technologist, in 1990 I had jabbed myself with an HIV-infected needle, and had had no other possible exposure. I was granted $40,000 and medical care until the end of what was likely to be a short life, and sank the money into a co-op apartment. In 2000, “medical care” was further restricted to AIDS-related conditions as defined by L&I.

Since 2002, my doctor has wanted me to live in a nursing home. Back in the ’90s, when I was acutely ill, I had been able to receive services at home: a visiting nurse could hook up an IV unit and check medications and dosages, and a worker would come to clean things up. But first, money for visiting nurses disappeared; last October, so did chore service. My doctor took a dim view of my living at home without them.

Now, I don’t get around very well: I use a scooter or walker cane (which grasps the upper arm). Then too, AIDS brings with it a fatigue that makes even vacuuming difficult. My right arm, my dominant arm, is losing power, and like most people with AIDS, I suffer intense pain from peripheral neuropathy. Repeated attacks of shingles cause both lingering pain and nerve damage. It isn’t easy keeping house, but I am fortunate in my friends and AIDS services. There’s no mold growing here, but I wouldn’t eat off the floor if I were you.

During a low point this spring I agreed to go into a nursing home for AIDS patients, but the next day reneged. Maybe it’s hard to clean or cook, but retiring to a nursing home means giving up almost everything: apartment, money, daily showers (with a bath chair) and worst of all, my dog, cats, fish, sleeping with my partner, and almost all my books. This tiny apartment is partitioned by and walled with bookshelves. I could take almost nothing with me. Although I have needed inpatient care for some time, I decided to soldier on, pushing for physical help as the necessity came up.

But then co-op dues went up, with a $600 assessment added for August. Where I was going to come up with $600, or even another $40 a month, I had no idea. And my mortgage had increased… I briefly reconsidered the nursing home, but then decided that I would let everything be sold out from under me for debt books, dog, apartment and all; I would sit on the front lawn in one of these plastic chairs and watch, like a dust-bowl farmer. It had happened to my people before; it could happen to me.

But mid-May, my vigilant social worker told me I had to move to get medical care at all.

Because of the new “Medicare D” rules covering prescription drugs, all programs accepting federal aid will change drastically. Until now my non-AIDS drugs have been covered by an AIDS insurance plan allowing me to pay $500 in small increments, after which I pay nothing for 30-odd drugs a month, but this program receives federal money. Medicare D “assistance” designed by the Bush administration will significantly increase what I will have to pay if I try to fill all my prescriptions.

Then too, rules for this insurance had changed: I probably no longer qualify. It is now only for the very poor, and I’m just garden-variety poor. In a nursing home, medicines would be covered all I had to do was give up everything.

I considered what it would be like to do without medicine for my angina, heart failure and brittle diabetes. Would I die quickly, or decline miserably for months or years? Not counting AIDS medicines (covered by L&I), I need about $2,000 worth of drugs monthly; the prescribed “percentage” I would have to pay under Medicare D might take it down to $1,000. Pardon me if I grin or grimace.

As things stand, I barely manage electricity, mortgage, dues, newspaper, phone, food, etc. AIDS medicines are covered, but unless L&I agrees, no others are.

No one knows what will happen, and I don’t want anyone to think I believe I’m singled out. Mine is just an example of what is happening now. Maybe Bush will succeed in gutting Social Security. Maybe L&I will decide not to cover any condition developing after my HIV exposure. Maybe I’ll sit out on the front lawn and whittle as the co-op auctions off my stuff. Who knows?

For god’s sake don’t get sick.

Lesbian activist Madelyn Arnold is a Northwest writer working on a sequel to her most recent novel, A Year of Full Moons. She can be reached via

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