Surviving and Thriving with AIDS: Hints for the Newly Diagnosed Michael Callen, Editor

©1987 PWAC NOTE: THIS IS OLD NEWS, posted for historical research only. The medical information herein is extremely outdated!

MISCELLANEOUS

FOUNDING STATEMENT OF PEOPLE WITH AIDS/ARC
"The Denver Principles"

[EDITOR'S NOTE: At the second AIDS Forum held in Denver in 1983, an amazing and diverse group of PWAs and PWArcs from around the country gathered and produced the following principles. These standards are as important today as they were when they were created.]

We condemn attempts to label us as "victims," which implies defeat, and we are only occasionally "patients" which implies passivity, helplessness and dependence upon the care of others. We are "people with AIDS."

--Statement from the Advisory Committee of People with AIDS, June 1983, Denver, Colorado, National Lesbian/Gay Health Conference


WE RECOMMEND THAT HEALTH CARE PROFESSIONALS:

1. Who are gay, come out, especially to their patients who have AIDS.

2. Always clearly identify and discuss the theory they favor as to the cause of AIDS, since this bias affects the treatment and advice they give.

3. Get in touch with their feelings (e.g., fears, anxieties, hopes, etc.) about AIDS, and not simply deal with AIDS intellectually.

4. Take a thorough personal inventory and identify and examine their own agendas around AIDS.

5. Treat people with AIDS as whole people and address psychosocial issues as well as biophysical ones.

6. Address the question of sexuality in people with AIDS specifically, sensitively and with information about gay male sexuality in general and the sexuality of people with AIDS in particular.

WE RECOMMEND THAT ALL PEOPLE:

1. Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us, separate us from our loved ones, our community or our peers, since there is no evidence that AIDS can be spread by casual, social contact.

2. Do not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.

WE RECOMMEND THAT PEOPLE WITH AIDS:

1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.

2. Be involved at every level of AIDS decision-making and specifically serve on the boards of directors of provider organizations.

3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.

4. Substitute low risk sexual behaviors for those which could endanger themselves or their partners, and we feel that people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.


PEOPLE WITH AIDS HAVE THE RIGHT:

1. To as full and satisfying sexual and emotional lives as anyone else.

2. To quality medical treatment and quality social service provision, without discrimination of any form, including sexual orientation, gender, diagnosis, economic status, age or race.

3. To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.

4. To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are.

5. To die and to live in dignity.

Statement of Purpose of The National Association of People with AIDS

Our purpose is to promote self-empowerment of persons with AIDS and ARC by:

* Enhancing understanding through education and support

* Becoming equal partners with our health care providers and service organizations

* Helping develop and implement the necessary services and programs that will enhance the quality of our daily lives; and

* Continuing to have control over and direction of our lives.

Mission Statement

We are People with AIDS and People with AIDS-Related Complex (ARC) who can speak for ourselves to advocate for our own causes and concerns. We are your sons and daughters, your brothers and sisters, your family, friends and lovers. As people now living with AIDS and ARC, we have a unique and essential contribution to make to the dialogue surrounding AIDS and we will actively participate with full and equal credibility to help shape the perception and reality surrounding this disease.

We do not see ourselves as victims. We will not be victimized. We have the right to be treated with respect, dignity, compassion and understanding. We have the right to leave fulfilling, productive lives--to live and die with dignity and compassion.

NAPWA will network with other PWAs and PWArcs regardless of race, color, creed, national origin, gender, age, disability and sexual or affectional preference. We are born of and inextricably bound to the historical struggle for rights--civil, feminist, disability, lesbian & gay and human. We will not be denied our rights!

AIDS SURVIVAL DATA
by Michael Callen

The charts below are based on analyses published by Alan Kristol, Ph.D. of the New York City Department of Health in the American Journal of Epidemiology.

I caution against the over-interpretation of this or any epidemiological analysis. However, since this is the first "hard" survival data I've seen, I thought other PWAs might share my interest.

For the purpose of understanding the charts below, a bit of explanation is in order. First of all, the data excludes pediatric cases of AIDS. The charts assume that in a given month, 100 cases of AIDS were reported and then follows the length of survival of those 100 cases. For example, chart 1 plots the survival rates of 100 gay men with AIDS. Of the 100, 91 were still alive one month after diagnosis. (This means that between the time of reporting and the space of one month, 9 gay men with AIDS died.) One year later, 45 of the original 100 were still alive (which means that 55, or slightly more than half, did not survive a year following diagnosis). Finally, the chart shows that four years later, 13 of the men were still alive!

Bear in mind, however, that the date someone is actually reported to the Health Department is not necessarily the date of the onset of symptoms or of the full-blown disease. So actual survival may be a bit longer than the charts reflect.

Chart 1 shows survival rates for gay men who were not IV-drug users. Chart 2 shows survival rates for IV-drug users who did not share the additional "risk factor" of gay sexual activity. Chart 3 combines the two groups and thus give an "average" survival rate for adults with AIDS.

The charts show that persons who have IV-drug related cases of AIDS tend not to survive as long as other persons with AIDS.

* * *

So what does this all mean?

Well, again, I caution against over-interpretation. As I've stated before, I sense that the pattern of this disease is changing. It is my personal observation that people are surviving longer than in the early days of this epidemic because of increased awareness of symptoms, earlier diagnosis and better understanding of treatments for the various opportunistic complications. I also sense that survival rates for "AIDS" vary depending upon the particular opportunistic complications, i.e., for example, that those who only have KS tend to live longer than those with PCP.

No one has ever denied that the mortality rate for AIDS is staggering. What seems to have been denied--or at least down-played--is that a certain percentage of us are surviving 3 and 4 years and more. I'm not entirely sure that we as a community are prepared to deal with the phenomenon of the survival of AIDS. But if these statistics are in the right ballpark, we'd better get prepared quickly. And what a pleasant task that should be!

PWA SURVIVAL RATES

for Gay, Non-IV Drug Using PWAs

# of PWAs Alive

100 || 91  80 | | 60 || 45 40 | | 22  20 | | 16 ₁3 ...

>0 | Months 1 12 24 36 48 ...>

After

Reported

PWA SURVIVAL RATES

for

IV-Drug Using, Non-Gay PWAs

# of

PWAs

Alive

100 |

| 85

80 |

|

60 |

|

40 |

| 33

20 |

| ¹⁵ 10

| ⁵

0

Months 1 12 24 36 48 ...>

After

Reported

COMBINED PWA SURVIVAL RATES

for

Gay, Non-IV Drug Using PWAs and

IV-Drug Using, Non-Gay PWAs

# of

PWAs

Alive

100 |

| 88

80 |

|

60 |

|

40 | 40

|

20 | 19

| ¹⁴ 10 ...>

0 |

Months 1 12 24 36 48 ...>

After

Reported

NATIONAL RESOURCES

DRUG INFORMATION:

AZT Federal Hotline 800/843-9388

DNCB 415/647-8561

Bay Area Ribavirin Interest Group 415/845-2205

Project Inform 800/822-7422

Women's AIDS Network

c/o San Francisco AIDS Foundation
333 Valencia - 4th Floor
San Francisco, CA 94103
415/864-4376

Mothers of AIDS Patients

P.O. Box 89049
San Diego CA 92138
ATTN: Barbara Peabody & Miriam Thompson

People with AIDS/ARC Switchboard--San Francisco
415/861-7309

AIDS Legal Rights Handbook
Free with SASE to: NGRA -- 540 Castro St. San Francisco, CA 94114

Holistic Health Care for AIDS (a sourcebook of descriptions), $3 from:
AIDS Education Fund - WWC
2335 18th St., N.W.
Washington, DC 20009


"AIDS: A Positive Approach"
by Louise Hay (self-healing audio tape, with meditations and visualizations), $10 from: Hay House, 3029 Wilshire Blvd. #206, Santa Monica, CA 90404

AIDS Mastery Seminars
212/337-8747
(personal growth and self-discovery workshop, for PWAs and PWArcs in cities across the U.S.)


PWA Coalition Newsline
263A West 19th St. - #125
New York, NY 10011
(monthly newsletter of articles and information by and for PWAs and PWArcs; free to them, $20 to all others)


Worldwide Moment of Prayer/Meditation
(daily at 10 P.M. EST)
AIDS Interfaith Network
415/928-HOPE


DIRECTORY OF PWA ORGANIZATIONS

UNITED STATES

National Association of People with AIDS
Attn: Stephen Beck
1012 14th Street, NW-Ste 601
Washington, DC 20005
202/347-1317

People With AIDS Coalition (New York)
Attn: Michael Hirsch & Griff Gold
263A West 19th Street - #125
New York, NY 10011
212/627-1810

People with AIDS (San Francisco)
Attn: Bobby Reynolds
519 Castro Street - #M46
San Francisco, CA 94119
415/553-2509

Being Alive
ATTN: Ron Rose
8235 Santa Monica Blvd. #311
West Hollywood, CA 90046
213/656-1107

The Aliveness Project
Attn: Steven Katz
5307 Russell South
Minneapolis, MN 55410
612/929-8256

PWA Coalition-Dallas
Attn: Mike Meridan
3905 Cedar Springs - #C8
Dallas, TX 75219
214/520-7254

PWA Coalition-Houston
Attn: Billy Burton
4300 Montrose - #700
Houston, TX 77006
713/522-7569

Boston PWA/PWarcs
c/o Boston AIDS Action Committee
Attn: Seth Newman, Alan Kuconis
661 Boylston Street
Boston, MA 02116
617/437-6200

Lifelink
Attn: James Chase
P.O. Box 02681
Portland, OR 97202
503/234-0193

Phoenix
Attn: Robbie Richards
P.O. Box 44347
Indianapolis, IN 46224
317/925-8703

CANADA

Vancouver PWA Coalition
ATTN: Warren Jensen & Kevin Brown
Box 136
1215 Davie Street
Vancouver, BC V6E1N4
604/683-3381

Toronto PWA Coalition
Box 1065
Station Q
Toronto, Ontario M4T 2P2

PWA Coalition Calgary
ATTN: John B. Robinson
11-911 15th Avenue, SW
Calgary, Alberta T2R 0S2



NY STATE AIDS CASES BY PATIENT GROUP

BLACK HISPANIC WHITE TOTAL

Gay/Bi

Non-IV user 815 660 2,983 4,458

Gay/Bi

IV use Unknown 30 24 71 125

Gay/Bi

IV User 141 110 169 420

Non-gay

IV User 1,073 873 322 2,268

Sexual Orientation

Unknown & IV User 42 36 18 96

All Other

Patient Groups 689


TOTAL: 8,056

[Information current as of October 29, 1986. Printed in AIDS Surveillance Update, New York City Dept. of Health, AIDS Epidemiology and Surveillance Unit, (212) 566-3630/566-0807.]



WHAT YOU CAN DO TO LOBBY CONGRESS FOR AIDS INCREASES
by AIDS Action Council

Write immediately to your elected representatives in Congress. [Letters from family and friends in districts outside of New York City are very important, since AIDS is not only a local problem. Letters from parents and concerned family members to their local representatives are very important.] They have no way of knowing how you feel about AIDS funding unless you tell them what you think.

The best way to communicate your views to legislators is by personal letter. Emphasis on personal. Mailgrams and telephone calls are also effective. Form letter, photocopies or other non-personal communications should be avoided.

Write directly to your Representative in the House and to your two Senators. You can send the same basic letter to all three, but be sure to prepare three individually addressed and typed or written letters (rather than copies). Proper forms of address are as follows:

* The Honorable (Full Name)
United States House of Representatives
Washington, D.C. 20515

Dear Rep. (Name)

* The Honorable (Full Name)
United States Senate
Washington, D.C. 20510

Dear Senator (Name)

Letters don't have to be long; in fact, the shorter, clearer and more direct they are, the better. Avoid negative or accusatory remarks.



OUR POLITICAL POWER
by David Garfield

Two Great Ideas to Practice and Share With Friends:

1. Every time Gene Sullivan receives any political mailing from any politician, he simply inscribe in red ink "WHAT ARE YOU DOING ABOUT FUNDING FOR AIDS?" and returns it. These politicians want our votes and respect a written response. Gene's simple action cuts out the rigor and/or tedium of composing an entire letter and tells those with funding of our political presence.

2. TELL YOUR UNION REPRESENTATIVE AND/OR INSURANCE PROVIDER ABOUT THE UNDUE COST OF AIDS CARE TO THE PRIVATE SECTOR IN THE ABSENCE OF APPROPRIATE GOVERNMENTAL AIDS FUNDING. The inadequacy of available and anticipatory measures to deal with this epidemic places an extreme financial burden on the unions and their affiliate insurance providers. Since these massive organizations wield massive political clout and since they move most quickly when their pockets are invaded, let's remind them through a call or letter of their immediate and potential expense.

TROUBLED BY UNSIGHTLY KS LESIONS?
ONE PWA OFFERS NO-RISK RELIEF
by Brick Michaels

It's bad enough having AIDS. But a dark Kaposi's sarcoma lesion in an obvious place can be further disheartening. Sometimes I didn't even want to go out in public. Those purple splotches made me too self-conscious.

I know that dermatologists have tried radiation, chemotherapy, and a host of drugs, as well as other less than satisfactory approaches. At last, I've finally found easy, no-risk comfort with a cosmetic approach.

I know that the PWA Newsline doesn't ordinarily endorse commercial products, but I must pass along success. We're in good company. In a recent column, Ann Landers made an exception to her own non-endorsement policy in order to give this product a plug. She felt it was worth breaking her rules to offer comfort to the earnest young girl who lamented a dark facial birthmark.

DERMABLEND, available at finer cosmetic counters everywhere (Macy's, for one) offers a solution through make-up. This product is particularly effective in masking KS lesions, birthmarks and other unsightly problems. (Ann Landers even reported using it on her own leg.)

It's a two-step process. First pick the cover creme closest to your own skin tone. Scoop out a bit with the enclosed spatula or your finger. Spread it over the unsightly area. Then blend it evenly with a sponge or your finger. A short wait until it dries, then you can proceed to step two: dust over the area with a powder.

Now you're ready to face the day!


THE PWA COALITION NEEDS YOUR SUPPORT

The People With AIDS Coalition (PWAC) was created by and for People with AIDS, People with AIDS-Related Complex, and concerned friends to self-empower People with AIDS and ARC by providing them with the kind of information they need to make well-informed choices.

Our programs and activities include:

* The PWA Coalition Newsline, a monthly newsletter about living with AIDS and ARC written by, for and about PWAs and PWArcs.

* The Living Room, a drop-in lounge, where light meals are served three times a week

* A variety of support groups

* Public Forums on topics of interest

* An apartment-share referral service for those in need of house.

We need your support!!

_____  I have enclosed a contribution of $ to help the PWA Coalition continue the fight against AIDS.

_____  Yes, I'd like to volunteer. Please contact me.

Name
Address
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