July 29, 2005
Volume 33
Issue 30

Tuesday, Mar 01, 2016 02:09
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Not Thinking Straight by Madelyn Arnold
What’s happening to people with AIDS
by Madelyn Arnold

Bad things are happening to people with AIDS [PWAs]: medical help is drying up. I can’t generalize very well about individual needs, other than for antivirals (the “cocktail”). I can only present my own case as a “long-term AIDS survivor.”


Mid-May, my vigilant social worker at Lifelong AIDS Alliance [LLAA] told me that I, personally, should move into a nursing home to continue getting my medical needs met.

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

Now, I admit 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 PWAs, 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 to be living in Seattle, where there are some (volunteer) services from such as LLAA. There’s no mold growing here, but I wouldn’t eat off this floor if I were you.



During a low point this spring I did agree to go to a home for AIDS patients, but the next day reneged. Maybe it’s hard to clean or cook, but retiring to a nursing home meant giving up almost everything: apartment, money, daily showers, dog, cats, fish — sleeping with my partner — and giving up 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 need arose.

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/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.



My social worker informed me that the new “Medicare D” rules (covering prescription drugs) designed by the Bush administration will force all programs accepting federal aid to change by next fall. Until now my non-AIDS drugs have been covered by an AIDS insurance plan governed by LLAA, allowing me to pay up to a set fee in small increments, after which I pay nothing for my 30-odd prescriptions/month; but this program receives federal money. Medicare D “assistance” will significantly increase what I will have to pay — if I try to buy all my own prescriptions myself.

Then too, due to revised guidelines (due to lack of funds) this insurance itself has 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’ve 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 (which, for me, are covered by Labor and Industries [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, etc.. AIDS medicines are covered, but unless L & I agrees, no others are. [And it won’t.]

Please don’t think I believe I’m singled out. Mine is just an example of what is happening here in the USA. 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?

But every year folks are exposed to HIV. With services cut back and the price of drugs, what will happen?

Whatever else you do, don’t get sick.

Madelyn Arnold, an early “Gay Liberation” activist, is a novelist and journalist contributing to the SGN since 1975. Hasn’t this chilly weather been delightful?
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