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Welcome

To
ACT UP
AIDS COALITION TO UNLEASH POWER
PHILADELPHIA
Welcome to Act Up Philadelphia. Whether this is your first meeting or
you've been coming along for awhile, this booklet has been put together to
provide you with an introduction to the day-to-day operations of Act Up,
its Monday night meetings, and the various sub-groups that work for the end
of the AIDS pandemic.

Visiting a Monday night meeting can be an overwhelming experience. There


is a tremendous swirl of information and energy, and it often seems that it
would be impossible to ever understand the many issues that are raised.
This booklet offers the reader a foundation on which to base his or her own
understanding of the AIDS crisis and Act Up Philadelphia's response to it.
Again, Welcome.

WHAT IS ACT UP 'i


ACT UP, or the AIDS Coalition to Unleash Power, was formed in March 1987.
It .is a diverse, nonpartisan group of individuals united in anger and
committed to direct action to end the AIDS crisis.

What do these words mean to ACT UP Philadelphia ?

Diverse: ACT UP Philadelphia brings together many individuals from


different backgrounds and experiences. Our sole uniting characteristic is
our committed desire to bring an end to the AIDS epidemic and crisis. Our
members include people with AIDS, and those who are both HIV+ and HIV-,
lesbians, straight folks, gay men, bisexuals, people of color, people of
different ages, and people from different class and educational histories.
We believe that the different experiences of our members help to strengthen
our response to a complicated disease and its political manifestations. We
welcome you to ACT UP and encourage you to participate in our actions with
the hope that you will bring to our discussions and debate your own
experiences and history.

Nonpartisan: ACT UP's membership and politics is never aligned to a


particular political party or organization. Our members include
independents, anarchists, Republicans, Democrats, Socialists and
participants in other political groups or organizations. Our political
response may, at different times, require criticism of any political
organization or individual, and we frequently do take issue with political
figures from many different parties and organizations. For you, the new
member, nonpartisan means that you should feel welcome in ACT UP whether
you are liberal, moderate, or conservative, regardless of the other
political organizations you may belong to. You will note that ACT UP
debates frequently reflect the different political backgrounds of our
members.

United in anger and committed to direct action to end the AIDS crisis:
ACT UP's dynamic approach, often using mass demonstrations and dramatic
acts of civil disobedience, focuses attention on crucial AIDS issues. ACT
UP's work has been instrumental in educating the public and creating
dialogue with drug companies and politicians to help end the AIDS crisis.
The following are a few highlights from the history of ACT UP Philadelphia:

Here's What We've Said: Here's What We've Accomplished:

1. "Condom's should be available in 1. After hearings and debate, an


the high schools" experimental condom distribution
plan was promised. A remarkable
win for ACT UP.

2. "There should be a publicly 2. BETAK opened in Mt. Airy in


funded AIDS nursing home in 1991. This one took community
Philadelphia." support, our sit ins, and our
staying power.

3. "There should be HIV positive 3. There is now an effort to get


representation on the Philadelphia 20% HIV+ representation on TPAC
AIDS Consortium to keep the social committees, and openly HIV+ people
workers and city honchos honest." serve on the TPAC board.

4. "City and State AIDS funding 4. City and State AIDS funding have
should be increased." been maintained. (There's more
work to do).

5. "There should be more drugs in 5. Four additional drugs joined the


the Penna. Pharmaceutical Benefits list in October. We've identified
Program than just AZT, Interferon, eighteen more. (There's more work
and Pentamidine." to do).

6. "Philadelphia Nursing Home is a 6. We've kept the spotlight on the


disgrace." Nursing Home through the James
Wilson case. The Nursing Home has
7. "Drug Users shouldn't have to provisional licensing and the Press
reuse and pass around needles. is now watching.
There should be a Needle Exchange
program to reduce the spread of HIV 7. Our first Needle Exchange Forum
and AIDS." was held in September, 1991. We
began needle exchange in November,
8. "Drug companies need to be 1991.
monitored with respect to drug
trials-entry criteria, proper 8. We have participated in
informed consent, and fair rewriting protocols for Ampligen
treatment." and had the informed consent forms
for Smith Kline's r-CD4 changed
after our protest.
9. "Homophobia, racism, sexism and
discrimination against those with 9. Our zaps are now well known--we
HIV should be fought wherever found have zapped city officials,
Jefferson Hospital, law firms,
state and federal officials, and
even homophobic ministers and
cardinals.
The Monday Night Meeting:

Welcome to your first Monday Night Meeting ! The Monday Night Meeting is
the most important and crucial event during and ACT UP Philadelphia week.
It is the meeting in which all actions, responses, criticisms, and
compliments are aired. The Monday Night Meeting provides answers to
questions that are raised by various committees and caucuses of ACT UP
Philly, and, most importantly, gives members who are not involved in those
committees a chance to hear what is planned or already going on. An
important principle of the Monday night Meeting is inclusion. All those
who attend the meeting should feel included in debate and discussion, and
there should be time for all views and positions on any issue to be
discussed.

ACT UP Philly organizes the Meeting to be as inclusive as possible. The


seats are arranged in a circular fashion so that everyone can be seen and
heard. Discussion is moderated by a facilitatrix/or (see below for a
description of her/his job) who seeks to include as many voices (especially
new ones) as possible in each debate. Questions are welcomed and
encouraged. If you are frustrated by the tone or the words involved in a
debate, raise your hand and ask a question. Although members are
encouraged to describe an action or issue in full so that new members can
understand, sometimes words or issues that are complicated float by without
discussion. Please raise your hand and ask a question if you do not
understand something. Consult the glossary at the back of this guide for
definitions of certain words and people. If you are not included in a
discussion, we want to make sure to include you.

Another important part of inclusion is the Agenda Board. The Agenda Board
sets the order of discussion for each meeting, it is open to anyone who
attends the meeting. Items can be added to the agenda board at any time
before or during the meeting. If you have an announcement or issue of any
sort that you would like discussed by the meeting, simply add it to the
agenda board when you arrive at the meeting.

The agenda board is divided up into a number of different topic areas.


These are:
1. Announcements- Any announcement that pertains to the present or future
actions or goals of ACT UP Philly.

2. Treatment and Data- These announcements refer to treatment issues,


drugs of use to people living with AIDS and HIV, Clinical Trials of
drugs, or accessibility of drugs and treatments.

3. Zaps- We zap people or organizations who, in ACT UP's judgement, have


made a decision or statement that is harmful to People living with AIDS
and HIV or to the general politics of AIDS. Zaps, which are discussed
in more detail below, require little planning.
4. Actions- Actions are, like zaps, responses to injustice on the part of
an institution or an individual. Unlike zaps, actions require
extensive planning and preparation. Actions are discussed in more
detail below.
5. Reports- ACT UP has many committees that meet during the course of the
week to work on the details of plans approved by the Monday Night
Meeting. During this section of the agenda, different committees and
caucuses will report back to the Monday Night Meeting to seek response,
criticism, and budget approval. Committees will also bring proposals
in front of the Monday Night Meeting and seek participation from those
attending. If you are interested in joining an ACT UP committee
or caucus, please sign up on the sheet found at the end of this
guide, or speak to the individual who gave the report of that
committee. There are more detailed descriptions of these committees
towards the end of the booklet:

1. P.I.S.D. Caucus
2. Women's Caucus
3. Treatment and Data
4. Action Committee, Artists' Committee, Media Committee
5. Fundraising Committee
6. Prevention Point Philadelphia (Needle Exchange)
7. Condoms in Schools
8. Defense Committee
9. People of Color in ACT UP

6. Non-ACT UP Announcements- This panel of the agenda board is devoted to


any announcements you may have about other organizations, meetings,
media issues, parties, etc.

The agenda board is for your use. Do not hesitate, at any point during the
meeting, to go up to the board and add an issue or question that is
concerning you.

The Facilitatrix/or: When the agenda board has been filled with issues for
the week, the facilitatrix will call the meeting to order. The
facilitatrix is there to help the meeting run as smoothly as possible.
She/He is not a leader or an official-- she/he must try to stay neutral in
all debates and recognize as many speakers from different positions as
possible. It is important that you use the facilitatrix/or if you want to
raise an issue or respond to a point already made. All speakers must raise
their hands and be recognized by the facilitatrix/or before speaking. This
is not a power trip on the part of the facilitatrix/or, but simply an
attempt to include as many speakers as possible. If you speak without
being recognized, the facilitatrix/or may interrupt you and recognize
another speaker. Be patient in raising your hand and your point will be
heard.

You, the facilitatrix/or: Anyone in ACT UP can be a facilitatrix/or, and


we encourage new members to be a facilitatrix/or whenever they like. you
will become a better facilitatrix/or as you do it more—so speak to the
facilitatrix/or of the present meeting if you are interested in learning
more. A guide, ACT UP--Democratic Practice, has been written as
information for those who would like to facilitate.

Discussion ground rules: People talking at the same time and people
talking to each other should be discouraged. If people have questions,
they should usually be put to the meeting at large rather than to other
people. The facilitatrix may ask questions of people to clear up
confusion. When you are recognized by the facilitatrix, you should speak
loudly, clearly, and briefly.
Decision ground rules: Voting is a quick, but bad way to make decisions.
As a way of deciding something, it does nothing towards making people
discuss their differences of opinion about the subject at hand. It lets
large groups of people dominate smaller groups (white people and people of
color for example). Often, it makes people who "lose" a vote feel bad.
Voting should be avoided. Instead, the facilitatrix will use a
discussion/decision method that finds common ideas in opposing viewpoints.
The facilitatrix will encourage people to find an agreeable common goal and
get people to make proposals for actions. When a proposal is made, the
facilitatrix will ask clearly if anyone objects to the proposal. If
someone does object, the discussion can continue, or, if the discussion has
gone on too long, it can be postponed until the next general meeting or go
to one of the committees. (The group may, at some time, reach a consensus
that the only way to decide something is to vote. If the issue is very
serious or nasty, a secret, written vote may be needed, but this is very
rare.) If there is no objection to the proposal, then the facilitatrix
should declare that it has passed. It is then an officially approved ACT
UP proposal.

Working on a proposal:

Planning a Zap or Action:

How does ACT UP Philadelphia plan its response to political problems?


Regularly, there's a government official who needs a response, a policy
that needs changing, a company making huge profits on AIDS drugs, or
important health care services that are not being provided—AND IT'S TIME
TO TAKE ACTION. Here are some of the ways in which we go about planning a
zap or action:

First, we ask ourselves some basic questions:

* What is the goal of our tactic? What do we want?


* Who is the target? Who is the action for or against?

* Who is our audience? Who do we want to reach or who will actually see
our zap or action?

* What is our message? What do we want to say?

* What is our tactic? How will we achieve our goal, hit our target,
reach our audience and get our message across?

The simpler our answers to these questions, the easier it will be for
us to come up with our plan, or scenario.
In deciding upon a proper response to a particular problem, ACT UP Philly
makes a distinction between a zap and an action. Whereas actions such as
larger demonstrations and pickets tend to be broad ranging arid symbolic,
the zap is often focused on specific target or goal. Zaps do not require
the extended planning of an action (no Action Meeting is required for a
zap), but instead can be proposed at a Monday night meeting and executed
before the next meeting. Zaps can take any form, from pickets to
disruptions of speeches and meeting, or simply the disruption caused by
distributing information (safe sex info, condoms, flyers, or fact sheets).
Initiating a zap: If you wish to propose a zap to the Monday Night
Meeting, you should prepare a number of copies of a zap proposal which can
be distributed for consideration at the Monday Night Meeting. This
proposal should include the issues involved, the names of culprits, and
suggested responses to the culprit. Many times, the immediate nature of
the need for a zap will not allow time for you to prepare such a written
proposal, but you should come to the Monday Night Meeting with the proposal
in your head if not in written form. At the meeting, you should place the
zap on the Agenda Board under the ZAP heading. The Monday Night Meeting
will then debate the zap proposal and, by consensus, either approve or
suggest modification to the zap.

Immediate concern and anger can be expressed through a Phone and/or Fax
zap. These are an easy and direct way of letting public officials and
others know what you want the to do or stop doing. It may involve voting
on a particular bill, or actually implementing plans they have proposed but
haven't acted upon. You may want to pressure "higher-ups" in the name of
their constituencies. People in positions of power take such actions
seriously. Politicians for example, usually keep track of their pro-and
con- calls on controversial issues.

The advantage of a fax over a phone call is that your entire message gets
directly to the specific person you want to reach rather than to a
secretary or switchboard operator. You can be creative and send graphics
as well as words. However, faxing costs more than a phone call. Phone and
fax zaps are particularly useful when you need to respond to something
quickly.

Initiating a Phone/Fax Zap: If you wish to initiate a phone or fax zap,


you should come to a Monday Night Meeting with copies of a proposal that
discusses your zap and, most importantly, provides the phone numbers of the
telephone and/or fax to be zapped. Phone/fax zaps are only successful when
everyone at the Monday Night Meeting has information available to
telephone/fax the individual and express their anger. Your fax/phone zap
proposal should include a basic summary of the issues of concern so that
ACT UP members can express their anger appropriately.

An action is distinguished from a zap by the nature of its planning and


inception. An action can be planned over a series of weeks, and will be
referred to the action committee for discussion and planning. The action
committee keeps the Monday Night Meeting apprised of the planning and
development of the action, and discusses controversial parts of the action
at the Monday Night Meeting's for consensus approval.

If you wish to propose an action, bring your proposal to the Monday Night
Meeting, list it on the agenda board under ACTIONS, and join in the
discussion and debate.

There are many types of actions. The most basic is the moving picket line.
This is a legal demonstration consisting of a group of people with fact
sheets, posters, and other visuals, walking and chanting in a circle in
front of a specific site. The First Amendment guarantees us the right to
free speech, and as long as we are on public property, keep the line
moving, and leave some room for pedestrians, we are not doing anything
unlawful. Similarly, handing out flyers and fact sheets at the demo site
or across the street (or in any public space) is perfectly legal.
If we decide to move our picket from one site to another, we have a march.
Other popular variations on the moving picket line include sit-ins, kiss-
ins, and die-ins. A die-in is when protesters lie down on the ground to
represent the thousands who have died or are being killed by the policies
and neglect of the government or our target. Often people chant ("How many
people have to die?, "We die they do nothing!", etc.) Sometimes protestors
carry cardboard tombstones with names or slogans, creating an instant AIDS
cemetery, and other times the "dead" bodies are outlined in chalk with
messages written in.

An action is an excellent forum for civil disobedience (CD). Civil


disobedience is purposeful direct action in which the participants risk
arrest by disobeying the law. This can include everything from blocking
traffic to a sit-in at some official's office.

Though all demonstrations should have a support plan, CD requires more


sophisticated support. Support is the main link between the arrestees' and
the outside world. People planning to do support must be willing to track
the arrestees' through the entire process and plan to get arrested
themselves. They observe the arrest of the demonstrators, noting who is
arrested and whether unnecessary force is being used, and then follow them
to wherever they are being held and wait at the site for all arrestees' to
be released. They coordinate with the lawyers and/or legal support and
support central--an off-site support designate who has a copy of the
support information and access to a phone and emergency phone numbers.
Support is best done in teams. Under no circumstances should anyone go to
a police precinct house or jail alone.

Members planning to get arrested should fill out a support sheet with their
name, home address, date of birth, emergency phone numbers, and 24-hour
needs (medicines, etc.) This sheet is handed in to the designated support
person and used for identification purposes. This list is kept internally
and is not given over to the police. Everyone wishing to risk arrest (or
even participate as support) is also encouraged to go through a CD
training, if possible. Of course, sometimes the police don't give you that
option.

Whatever the action, we always use fact sheets, chants, and visuals. Fact
sheets are information sheets briefly outlining why we're protesting and
what our demands are. Chants help get our information out to the public
(and the media)in small soundbites ("Health care is a right--Health care is
a right—ACT U P ) . Chants also keep the momentum of the group at a high
pace.

Visuals are extremely important in getting our message across to the


public, and for the media they are essential. A picture is worth a
thousand words, especially when city reporters are not terribly AIDS
literate. Visuals can include posters, banners(both carried or hung from
sympathetic windows, rooftops, or scaffolding, or when indoors, suspended
aloft by helium balloons), red tape, handcuffs, sheets, clown masks, tote-
boards, or even people-driven visuals (e.g. die ins).

Wheatpasting of visuals is also tremendously important part of preparation


for any action. Wheatpasting is direct action itself, and it is a
wonderful way to inform the public of the issue with which we are
concerned. ACT UP Philadelphia's wheatpasting brigade is well-versed with
the ins and outs of decorating the city, and they will welcome your help.
Another key component in planning an action is logistics, or the "where"
and "when" of our action. For an action, these are often planned in
advance by the action committee; for a zap, the logistics are frequently
decided upon at a Monday Night Meeting. We try to scout out the location
of our actions ahead of time. This gives us a picture of traffic and
security concerns and helps us to decide upon a scenario. Days and time
are also important--When do we have the best chance of catching the
attention of both the people and the media? When can we expect our own
members to show up?

At the action itself, we have members of the group acting as marshall's to


help facilitate the demonstration. They serve as a buffer between the
demonstrators and the police or any other unfriendly presence. They are
also an important communications link, and can be used to keep all
participants informed of changing plans or emergencies. They do not
control or police the demo.

Another on-site job is that of legal support. Their job is to observe the
action and write down any "happenings" or interactions with the police,
paying particular attention to the names and badge numbers. This job has
recently become easier with the addition of an ACT UP video recorder.
Legal support people do not participate in the actions, they are just
interested bystanders with pen and paper. They do not have to be lawyers.
They also may be aware of contingency plans: the "what-ifs ?" that may come
about because of rain, site choice, or police reaction.
Dealing with the media:

Anyone in ACT UP Philadelphia can be a spokesperson for the organization.


This is a basic principle of our group. As you become better acquainted
with the Philadelphia media, you will realize that they are interested in
our actions, but they will often twist the message of the action to suit
their own purposes. Our purpose is to get our message across through the
media as best as possible, but often times it is true that even bad media
coverage is better than none. In order to aid the press in their fearless
quest for the truth (heavy sarcasm), consider these possibilities in your
interactions with the media:

1. Be friendly. Have a sense of humor whenever possible.


2. Be straightforward about the issue. Give them the "hook" for the
story right away.
3. If they have done some reporting that you thought was good, tell
them so. Reporters do not get a lot of compliments. They get
complaints, so a compliment will incline them to listen to you.
4. Don't make demands. Reporters already have enough of them. If
they do not respond to friendly persistence, they are not going to
respond.
5. Do not expect them to be familiar with you issue. Reporters often
cover a huge variety of issues. Even a reporter who writes only
on AIDS issues may not be familiar with every AIDS issue. Inform
them if they don't know, tell them why it's an important story.
Offer them a press kit (information about the action).
6. If a reporter does a good job covering your demo or an important
issue, let them know. Write them, or give them a call. If they
get something wrong, let them know that too, preferably in
writing.
Actions and zaps are always discussed and debated after the fact at
subsequent Monday Night Meetings. Please bring your comments and
criticisms to the meetings so that we can make our future actions and zaps
better and stronger.

Committees:

Although the Monday Night Meetings are the backbone of ACT UP Philadelphia,
it is the committees that provide the hard work and research to keep our
political work moving. It is important to say that without the committees,
ACT UP would cease to exist. You are welcome, indeed encouraged, to come
along to the regular committee meetings each week. Below is a concise
description of each committee as well as its meeting place and time:

P.I.S.D.:

People with Immune Suppressed Disorders: This committee meets to


discuss issues that are of concern to people living with HIV and
AIDS. The P.I.S.D. caucus keeps issues of interest and concern to
people living with AIDS on the ACT UP agenda. You must be a person
living with AIDS or HIV to participate in this caucus. This committee
meets periodically.

Women's Caucus:
The women's caucus meets periodically to discuss issues and plan
activities related to the needs of women living with AIDS, and women's
health in general. The caucus has worked in the past on the regional
Woman and Aids conference, treatment availability for women, women's
representation and coverage of women's issues by the Philadelphia Aids
Consortium (TPAC), and women's involvement in ACT UP Philadelphia.
You must be a woman to participate in this caucus. Caucus meetings
convene at the ACT UP Philadelphia office, 201 S. Camac Street,
Penguin Place.

Treatment and Data (T+D):


Treatment and Data committee does research into drugs and treatments
for people living with AIDS and HIV. T+D, as it is affectionately
known, is an important component of ACT UP's work, because it is of
direct and important relevance to those who are concerned about their
own health or that of a friend or lover. ACT UP Philadelphia has a
core group of devoted members who keep up with the research into
different drugs and trials, and reports are frequently made on the
floor of the Monday Night Meeting about such treatments. T+D meets
the first and third Monday of every month at 7pm at St. Luke's before
the general meeting.

Action Committee:
The Action Committee develops, prepares, researches, and helps to
execute actions that have been proposed by the Monday Night Meeting.
Action is one of the most active committee meetings in ACT UP, and a
must-see for all new members. Meetings work on the actual logistics
of actions and some zaps, and prepare everything form banners to press
kits. Meetings are every Wednesday night, 7:30 PM, at the ACT UP
Philly office, 201 S. Camac St., Penguin Place.
Fundraising Committee:
The fundraising committee is the central group involved in organizing
events to fund ACT UP's actions. We have organized successful
dinners, dances, and parties at numerous clubs to keep our bank
account stable. If you have any interest in financial or fund-raising
matters, please do get involved. We meet at the ACT UP Office, 201 S.
Camac Street, Penguin Place. Dates and times will be announced at the
Monday Night Meetings.

Prevention Point Philadelphia (Needle Exchange):

Prevention Point Philadelphia is an umbrella group of organizations


devoted to distributing clean needles in exchange for dirts' ones to
drug users in various neighborhoods in Philadelphia. An initial
program of needle exchange was designed to run from November 16, 1991
to January 1st 1992. PPP has been extremely well received and has
continued to flourish throughout the first half of 1992. ACT UP's
members are deeply involved in this project. The Needle Exchange
affinity group of ACT UP Philadelphia (a part of Prevention Point
Philadelphia) meets on Tuesday's at the ACT UP office 201 S. Camac
Street. If you are interested in this committee talk to Lois at 387-
0270 or Jon Paul at 627-1246.

Condoms in Schools:

ACT UP Philadelphia fought long and hard to ensure a safer-sex


education plan and the distribution of condoms for Philadelphia
schools. In 1990, the Philadelphia School Board finally authorized
the program, but, to date, no action has taken place. The Condoms in
Schools committee is a watchdog over the school board, and will
continue to propose zaps and actions until the School Board follows
through on its promise and agreement.

Defense Committee:

The Artists' Committee works in conjunction with the Action Committee


to provide eyecatching graphics, posters, leaflets, fact sheets, and
products for ACT UP Philadelphia. The artists' committee also has a
sub-group, the Obituary Committee which designs artistic obituaries of
Philadelphia citizens who have died during the epidemic.

People of Color in ACT UP:

Caucuses for People of Color in ACT UP will be called to discuss the


unique ways in which the epidemic has struck communities of color in
Philadelphia and elsewhere. The caucus will work to fight the
pernicious effects of racism which compound the problems faced by
people of color who are living with AIDS.
Committees are the engine of ACT UP's work. Listen to the Reports at this
Monday night meeting, and get involved on a committee or committees of your
choice. Ask the facilitatrix/or of the meeting to assist you, or you may
express your interest on the form below, give this form to the
facilitatrix, and the contact person for the committee or caucus will get
in touch with you.

It's that easy i il

NAME:

ADDRESS

PHONE:

I am interested in the following committees: (please circle):

1. P.I.S.D. Caucus

2. Women's Caucus

3. Treatment and Data

4. Action Committee

5. Fundraising Committee

6. Prevention Point Philadelphia (Needle Exchange)

7. Condoms in Schools

8. Defense Committee

9. People of Color in ACT UP

10. Artists'/Obituary Committee


Now that you have an introduction to the workings of ACT UP Philadelphia
and its committees, there only remains general information about the
organization and AIDS politics in Philadelphia. We have appended a
glossary of terms and names so that you can better follow discussions at
the Monday night meetings.

General Information:

The ACT UP Office: The ACT UP Philadelphia office is a lovely space for
all your activist needs. There is gorgeous furniture, a copy machine, a
fax machine, a computer, and a phone for your use in any activist pursuits.
The FAX number is 731-1845; the phone number is 731-1844, there is a phone
mail box so feel free to leave a message. The address of the office is 201
S. Camac Street, Penguin Place. Directly behind the 12th St Gym.

ACT UP Products: A full range of ACT UP products, from stickers to T-


shirts and coffee mugs is available at the Monday Night Meetings. All
proceeds go to ACT UP Philadelphia.

The Monday Night Meeting Space: The Monday Night Meetings meet each Monday
at 7:30 at St. Luke's and the Epiphany Church, 13th St. between Spruce and
Pine.
The ACT UP Network: The ACT UP network is our means of communication with
other ACT UP's across the world. Conference calls are held frequently with
other ACT UP's. There is also a women's conference on the network. Call
545-2212 for info.
The Critical Path Aids Project: One of the best publications dealing with
many issues of interest to ACT UP members. ACT UP Philly's Kiyoshi
Kuromiya is editor, and provides us with copies. Critical Path provides
the information that will help to bring a swift end to the epidemic.

The Critical Path Aids Project Computer Bulletin Board: On-line on


November 1, 1991, this bulletin board provides crucial information to AIDS
activists. The b board includes an ACT UP discussion group. Modem lines
to the board are 564-1052 or 564-1090.

The Treatment and Data Digest: Published by ACT UP New York, gives up to
date information on treatment and data. Distributed at ACT UP Philly's
Monday Night Meetings.

Standard of Care: On April 15, 1992 the Treatment and Data Committee,
coordinated by Jonathan Lax, Kiyoshi Kurmiya, and Coleman Terrell,
published the first HIV Standard of Care. The Standard of Care has been
extremely well received and is a must have for anyone involved in the fight
for an end to the AIDS crisis. Standard of Care's can be found at the
Monday Night Meeting or by calling the office and requesting that one be
sent.
ACT UP PHILADELPHIA GLOSSARY:
ACT UP meetings can be very difficult to follow when there are obscure
vocabulary and mystical acronyms flying around the room. We have compiled
a list of frequently used terms and acronyms here, and we encourage you to
make use of this reference during the meetings. If there is a term that is
used and not mentioned here, please ask the facilitatrix/or for a
definition of the term. That's what he/she is there for. The glossary is
divided into two sections; first a glossary of Philadelphia-related terms
and institutions; secondly, a basic glossary of treatment terms.

PHILADELPHIA GLOSSARY

ActionAids: (advocacy; case management and referral; practical assistance


of volunteer buddies; support groups; educational programs, including
collaborative safer sex workshops and forums.), 1216 Arch St., 4th Floor,
Phila., PA 19107, 981-0088. Ennes Littrell, Executive Director;

ACT UP, Phila.: That's us. 201 S. Camac St. Philadelphia PA 19107. 731-
1844, fax 731-1845.

AACO ("eh-co"), AIDS Activities Coordinating Office, Phila. Dept. of


Health, 1220 Sansom Street, 4th-7th floors, Phila PA. 686-1800. Anna
Forbes, Services Liaison. 686-1812.

AIDS Consortium of Philadelphia (TPAC): Planning council for Federal Ryan


White Act funding. Jim Littrell, Executive Director.

BEBASHI: (Blacks Educating Blacks About Sexual Health Issues), services to


communities of color.

BETAK: (AIDS specific nursing home in West Mt. Airy)—ACT UP was the main
force behind its opening.

Carbine, Michael: Director of the State's "fight" against AIDS. He


requires constant attention.

Gold, Maria: Deputy Health Commissioner for the Infectious Disease Control
in the Philadelphia Health Department. AACO reports to her.

Phila. Community Health Alternatives (Phila. AIDS Task Force-PCHA): Client


Services, Intervention Services, Education, Clinic. 545-8686.
Philadelphia FIGHT (Field Initiating Group for HIV Trials): Community
based clinical trials, publishes free Philadelphia clinical trials
directory. 893-2672.
PPP (Prevention Point Philadelphia): Philadelphia's first Needle Exchange
Program.

Smith, Gregory: A prisoner in the New Jersey prison system who has been
accused of biting a guard and sentenced for attempted murder because of hid
HIV+ status. ACT UP Philadelphia works with the Justice for Gregory Smith
Coalition to make sure that he is treated reasonably well.
We the People with AIDS/ARC: 425 S. Broad Street.: Support groups,
clothing bank, healing circle. 545-6868. David Fair, Director.
National Organizations and Treatment Glossary
Acquired .Immune Deficiency Syndrome: A manifestation of infection with HI
characterized by the presence of one or more diseases or conditions as
defined by the Center for Disease Control (CDC). These diseases occur
after HIV has severely damaged the immune system, leaving the affected
person susceptible to unusual infections and malignancies, (see
Opportunistic Infection).

ACTG: AIDS Clinical Trials Group: system of cooperative medical


institutions conducting NIAID's clinical AIDS drug trials.

Adenopathy: Enlargement of glands, especially the lymph nodes.

Aerosol Pentamidine: A drug used as a preventative therapy for PCP.

AIDS-Related Complex (ARC): A term not officially used or recognized by


the CDC which has been used to describe a variety of symptoms and signs
found in some persons affected with HIV. These may include recurrent
fevers, unexplained weight loss, swollen lymph nodes, and/or fungal
infection of the mouth and throat.

AmFAR: The American Foundation for AIDS Research. A nonprofit


organization founded by Dr. Mathilde Krim to fund AIDS research.

Ampligen: An antiviral and immunomodualtor may slow or block the


progression of HIV disease.

Approval process for drugs: According to FDA regulation, involves 6 steps

1. Preclinical: laboratory and animal studies.


2. Company files for Investigational New Drug status with FDA.
3. Clinical trials begin.
4. Company files for permission to market drug
5. FDA review of application.
6. FDA approval/rejection of application.

Asymptomatic seropositive: An individual who has been infected with HIV


but has no apparent symptoms. HIV positive individuals can still infect
others with the virus even though they are asymptomatic.

AZT: Also known as Zidovudine. The trade name is Retrovir. Some people
can only tolerate AZT for 18 months to 2 years. The only anti-HIV agent
approved by the US so far.

Candidiasis: An infection of the skin, nails or mucous membranes. The


oral form of candidiasis, known as thrush, is often the first sign of HIV
infection.
Clinical Trial: A study done at an approved institution testing medicines
in human beings.
CMV Retinitis: An infection of cytomegalovirus (CMV) in the retina of the
eye which can cause blindness.
Cofactors: Other substances, microorganisms or characteristics of
individuals which make them more likely to develop AIDS after HIV infectio
or influence the progression of the disease.
Compassionate use: A regulatory mechanism for releasing an investigational
new drug when there is little established data as to its efficacy. The
drug company is generally not allowed to charge for compassionate use and
must be willing to give the drug free of charge to those patients whose
medical condition might be he]ped by the use of the new drug.

ddC, ddl : Drugs currently under study for use alone and in combination
with AZT. Both nucleoside analogs, like AZT.

Diagnosis: The process of determining the cause and nature of an illness.

FDA: Food and Drug Administration, an agency of the US government which


controls and regulates human testing of drugs before marketing. After the
clinical trials are completed, the drug sponsor (drug company, etc.) must
submit all data collected to the FDA for approval before the drug can be
sold in the US.

Gay Mens' Health Crisis (GMIIC): One of New York's AIDS service
organizations.

Human Immunodeficiency Virus (HIV): The retrovirus isolated and generally


recognized as the cause of AIDS.

IDU: Injection drug user(s).

Kaposi's Sarcoma ( K S ) : A tumor of the walls of lymph vessels. It usually


appears as pink to purple painless spots on the surface of the skin, but it
can also occur internally.

National Institute of Allergy and Infectious Diseases: One part of the NIH,
and the most important one for AIDS research, it supports basic research,
epidemiology and natural history studies, blood screening tests, drug
discovery and development, vaccine development and testing, and treatment
studies. It administers the ACTG network of testing units at hospital's
around the country and the CPCRA, a community-based network of AIDS
treatment research.

NCI: National Cancer Institute: Because of the prevalence of KS and


lymphomas in AIDS, the NIC has been deeply involved in AIDS research.

NIH: National Institutes of Health: Mandated by the Randall Act of 1930,


it's mandate was to "determine the cause, prevention, and cure of disease."
Today there are twelve constituent institutes, several research and support
divisions and a National Library of Medicine.

Opportunistic Infection (01): An illness caused by an organism that


normally does not cause disease in a person with a normal immune system.
When an individual's immune system becomes weak, these organisms may cause
serious or life-threatening illness.

Parallel Track: A system of distributing experimental drugs which have


completed initial testing to patients who are unable to participate in
ongoing clinical trials.

PCP, Pneumocystis Carinii Pneumonia: A common parasite which grows rapidly


3 f Pe Ple with AIDS and is t h e l e a d i
Pa'tients^ ° ° ^ cause of death in AIDS
Phase I: This phase of FDA clinical trials determines toxicity and d
small groups of humans.

Phase II: This phase of clinical trials is the stage at which drug
effectiveness is established.

Phase III: This phase expands Phase II study to 3000 volunteers. De


to backup information gathered in Phase I and Phase II studies.

PWA/PLWA: A person living with AIDS.

Risk Factors: Any behavior that increases the chances of HIV infecti<

T-4 (helper) cell: Also known as a CD4 cell. Immune cells which seel
attack invading organisms. AIDS reduces the number of T-4 cells, thu:
increasing chance of illness from infection.

Vaginal yeast infections: In women, persistent vaginal yeast infectic


can be an early sign of HIV disease.

NOTES. QUESTIONS. IDEAS FOR REVISION OF THIS BOOKLET

This booklet was produced by the ACT UP Philadelphia Action Committee.


Thanks to the Critical Path AIDS project, Russell Johanneson and A C T ^ I
^ t t o l l W tor W t u l glossaries, directories, and philosophical