Congress: How to Help



The news from Congress this year could have been much worse.
Fortunately, the partisanship and ideology is partly balanced
because many conservative members have personally known
people with AIDS, and are willing to support research and
care. The strong Ryan White reauthorization effort shows that
bipartisanship on AIDS is possible.

But the problems have not gone away -- and are expected to
get worse during the fiscal 1996 budget and appropriations
process. We still hear reluctance to support research for a
"behavioral" disease. We still hear comparisons of funding
per death on AIDS vs. other medical research -- not
distinguishing between infectious and non-infectious
diseases, and presented as an excuse to cut AIDS funding, not
as a case for increasing medical research elsewhere. The
House has eliminated HOPWA AIDS housing funding even for the
current year (although this could be reversed in the Senate)
-- despite the facts that the program has worked
exceptionally well, that 60 percent of people with AIDS will
need government-supported housing at some stage in their
illness, and that supportive housing costs $40 to $100 per
day while a hospital bed, often the alternative, costs over
$1000. And we face increasing moves toward mandatory HIV
testing, with no provisions for counseling or for care, as a
cheap way to appear to be doing something.

Citizens' input, through letters, calls, and visits to their
representatives, is more urgent now than ever before. But
AIDS organizations have done better "inside the Beltway" than
in supporting the citizens' activism. That is why there is no
mass movement yet to support AIDS politically, why only a
tiny fraction of affected people are involved, and why there
is no single or consistent source for connecting with local
organizations, getting the necessary background information,
and receiving action alerts as issues become current. And
some organizations produce excellent information, but have no
distribution to individual membership or mailing lists,
meaning that there may be no way for you to receive what they
produce, either for free or otherwise.

The following are a few national and regional organizations
which may be helpful. Many have been left out, as there is no
coherent national list, and no such thing as a complete list
of AIDS political organizations.

National Organizations: AIDS Focus

National Association of People with AIDS (NAPWA). This major
membership organization offers a number of services -- some
to members and nonmembers alike:

* THE ACTIVE VOICE, a free quarterly newsletter, primarily
focuses on legislative issues. It includes some action alerts
when they are not time-critical.

* The Positive Action Network (PAN), especially for persons
with a fax machine, allows individuals to be kept informed of
major issues.

* NAPWA is now updating a pamphlet on how to contact
Congress; it will be sent to all members when ready, probably
early this summer.

* Information and referral can connect you with local NAPWA
chapters, and with other organizations.

NAPWA offers other services, including NAPWA-FAX, a fax-on-
demand system, with information on a variety of HIV/AIDS
topics. To use it, call 202/789-2222 from the headset of your
fax machine. NAPWA also publishes Medical Alert, a free
bimonthly newsletter with information on mainstream and
alternative treatments.

NAPWA is the coordinator of AIDSWATCH '95, a grassroots
effort to bring individuals from each U.S. congressional
district to Washington D.C. to advocate for greater AIDS
awareness and funding for care, research, prevention, and
housing. This year's event will be May 21 - May 23.

Membership in NAPWA starts at $25 per year. For more
information, call 202/898-0414, or write to NAPWA, 1413 K St.
NW, 7th floor, Washington, D.C. 20005.

AIDS Action Council. This major AIDS policy and advocacy
organization does not have individual memberships or a
mailing list of individuals. Instead, its members are about
one thousand AIDS service organizations across the U.S. Some
of these member organizations redistribute AIDS Action
Council materials, either verbatim or otherwise, to their own
advocacy networks. Others should be encouraged to do so, as
AIDS Action Council produces perhaps the most extensive
information anywhere on AIDS and Congress.

This material includes the WEEKLY WASHINGTON UPDATE, an
online newsletter distributed on the HandsNet HIV/AIDS Forum
computer system -- which unfortunately reaches only about 75
AIDS organizations because of its cost. AIDS Action Council
does not itself distribute this information more widely on
the Internet, but it is possible for others to do so. One
individual with access to the HandsNet computer system could
easily provide an important national service simply by
uploading this information to the major AIDS computer
networks; no one is doing so now.

AIDS Action Council also produces the most extensive action
alerts available on national issues as they reach legislative
decision points. These action alerts are usually addressed to
AIDS service organizations; ideally, some of them would be
slightly rewritten for citizen activists. For example, those
writing to Congress as experts (or as those with relevant
personal experience) may want to write to all the members of
a key committee which will be making decisions on the issue;
while those addressing Federal issues as citizens without
special knowledge would usually be encouraged to contact only
their own representatives -- their Congressperson and two
Senators -- always the most important members to call or
write.

For more information about most AIDS Action Council materials
and programs, it is probably best to work with a local AIDS
service organization which is a member of AAC.

The AIDS Action Council also operates the National AIDS
Response Network (NARN), which faxes selected action alerts
to individuals who can re-transmit them to their own
networks. For more information about NARN, call Matt Patrick
at AIDS Action Council, 202/986-1300 ext. 12.

Treatment Action Network. The Treatment Action Network,
operated by Project Inform, consists of about 900 individuals
and organizations nationwide which organize grassroots
support on research and treatment issues. Membership is
available free of charge. For more information, call Project
Inform at 415/558-8669.

Mobilization Against AIDS. San Francisco based Mobilization
Against AIDS does direct lobbying on national AIDS issues,
focusing on prevention reform, appropriations, and the threat
of block grants; also, it organizes the annual AIDS
Candlelight Memorial. It publishes a syndicated AIDSWatch
column, distributed by computer in alternative versions of
different length for publication in gay and AIDS periodicals.
For more information, including where to find AIDSwatch in
your city, call Mobilization Against AIDS, 415/863-4676.

Center for Women Policy Studies. The Center for Women Policy
Studies distributes action alerts on all women and AIDS
issues, and works to reduce barriers to appropriate medical
care. One current focus is the Ackerman Bill (Newborn Infant
HIV Notification Act, HR 1289), which would effectively
institute mandatory testing of pregnant women.

For more information, call the Center for Women Policy
Studies, 202/872-1770.

National Minority AIDS Council (NMAC). NMAC provides
technical assistance to several hundred minority AIDS
organizations. For more information, call the membership
department at NMAC, 202/544-1076.

Committee of Ten Thousand (COTT). This group is supporting
legislation on hemophilia and AIDS, especially the Ricky Ray
Hemophilia Relief Fund Act (HR 1023), which would lay the
groundwork for compensation of persons who contracted HIV
through blood products -- and the Blood Products Advisory
Committee Act (HR 1021), which would require that at least
one third of the voting members of the FDA's Blood Products
Advisory Committee be persons who have received blood
products, or who represent consumer organizations with
expertise in blood products.

For more information, call COTT at 617/739-COTT.

Mothers' Voices. This new organization, primarily of mothers
of persons with AIDS, works to raise awareness of the
epidemic and change attitudes and public policies. It
publishes a quarterly newsletter, STRAIGHT FROM THE HEART,
and is now circulating Mothers Day cards which are signed by
family members and friends and delivered to legislators. For
more information, call Mothers' Voices at 212/730-2777.

National Organizations: Gay Focus

but AIDS Activity

Log Cabin Republicans. Those with a Republican viewpoint may
want to contact this gay Republican group, which is also
active in AIDS issues; currently its number one legislative
priority is reauthorization of the Ryan White CARE Act. It
has a team of lobbyists who follow Congressional issues, and
it has the best contacts with Republican members of congress
of any AIDS organization -- which is especially important now
since Republicans control both houses of Congress. It can
send callers any material it has, or refer them to local
Republican organizations, including Log Cabin chapters in 32
states.

For more information, call David Greer, Director of Public
Affairs, 202/347-5306, or write to Log Cabin Republicans,
1101 14th St. NW, Suite 1040, Washington, D.C. 20005.

Human Rights Campaign Fund. The Human Rights Campaign Fund,
the largest gay rights organization with a mailing list of
325,000, also works on AIDS issues. It offers a number of
membership and advocacy programs including FAN (Federal
Advocacy Network), which recruits and trains members to
mobilize grassroots support and attend local meetings with
members of Congress -- and Speak Out, in which members
authorize HRCF to send immediate messages to members of
Congress on selected issues. It does not separate its AIDS
and gay work, in that a person cannot sign up specifically
for only one.

For membership information or to join the Human Rights
Campaign Fund, call 800/777-HRCF. For other information, call
202/628-4160.

Some State, Regional Organizations

The national organizations seldom follow statewide
legislative issues. The following state and regional
organizations can help you follow state (and also sometimes
federal) AIDS issues, and make your voice heard at critical
times.

This partial list includes ten states and territories with
the most AIDS cases, and some other states when we happened
to have the information. If your state is not listed here,
you may be able to find an appropriate referral through a
local AIDS service organization; ask them who does
"legislative advocacy" for your state. Or you could ask the
National AIDS Hotline, 800/342-AIDS. Or ask Mobilization
Against AIDS (listed above under national organizations) to
refer you to a local coordinator of the AIDS Candlelight
Memorial -- who will probably know an organization doing
advocacy work for your state.

California.

Northern California: The Bay Area HIV Advocacy Network,
operated by the San Francisco AIDS Foundation, is now
recruiting individuals and organizations in all counties in
Northern California. It offers action alerts, informational
mailings, a fax/phone tree, and HIV POLICY WATCH, a monthly
policy bulletin. It organizes meetings with legislators, and
public policy roundtables. For more information, call Ryan
Clary at BAHAN, 415/864-5855 x 3032

Southern California: AIDS Project Los Angeles maintains three
grassroots networks, focusing on action alerts by mail,
urgent alerts by fax, and training for in-person lobbying.
For more information, call APLA, 213/993-1680.

Three other organizations in Southern California also provide
information to their constituents and friends on pending
local, state, and federal AIDS policy issues, and coordinate
action alerts:

AIDS Healthcare Foundation, Los Angeles -- contact Csar
Portillo, 213/462-2273.

AIDS Service Center, Pasadena -- contact Connie Norman or
Paul Daniels, 818/796-5633.

Being Alive: People with HIV/AIDS Action Coalition of Los
Angeles -- contact Gary Costa or Robert dal Porto, 213/667-
3262.

California statewide: Rural AIDS Project. Contact Donna
Yutzy, 916/444-0424.

Florida. HEALTHLINK Inc. has mailing, phone, and fax lists.
Contact Marie Wansiki, executive director, 305/565-8284.

Georgia. AIDS Survival Project, 404/874-7926, has a monthly
newsletter and a fax network.

Illinois. The AIDS Foundation of Chicago has a fax alert
network for Illinois, for both state and federal issues.
Contact Michelle Mascaro, 312/922-2322.

Kentucky. Call David Mont, AIDS Volunteers, 606/254-2865.
AIDS Volunteers is a clearinghouse for information from the
AIDS Action Council, the Fairness Coalition, and the Title II
coalition.

Maryland. Contact AIDS Legislative Committee, Liza Solomon,
President, P.O. Box 1322, Baltimore, MD 21203. The AIDS
Legislative Committee hires a lobbyist on Maryland issues,
and distributes action alerts.

Massachusetts. Mass Action, a volunteer organization of about
600 people, operates a phone tree to generate calls to
legislators on AIDS/HIV issues. Also, the Massachusetts AIDS
Policy Task Force organizes testimony to the legislature and
meetings with representatives. Both projects focus on state
issues, but now are responding to Federal issues also. For
more information about these programs, call Chris Marrion at
the AIDS Action Committee, 617/450-1213; for other
information about the AIDS Action Committee, call 617/437-
6200.

New Jersey. AIDS Resource Foundation for Children, 201/483-
4250.

New Mexico. The New Mexico Association of People Living with
AIDS, 505/266-0342, has a newsletter and a fax list.

New York. (1) The Gay Men's Health Crisis runs New York
Citizens AIDS Network, which consists of three response
networks: the Letter Brigade, the Quick Response Corps (for
emergency response to faxed alerts), and the Frontline Action
Force, which conducts monthly trainings by the public policy
department to prepare people for lobbying, testifying, etc.
For more information, call the Public Policy Information
Line, 212/337-3338. This organizations focuses on New York
City, but also covers state issues.

(2) The New York AIDS Coalition distributes action alerts,
helps people contact legislators, and has local groups,
focusing on New York State issues. For information, contact
Joey Presley, 212/629-3075.

Pennsylvania. Call PCASO, Pennsylvania Coalition of AIDS
Service Organizations, 717/238-2437. Individuals in
Pennsylvania can sign up to be on a fax or mailing list for
action alerts.

Puerto Rico. Contact Comision de Derechos Civiles, Apt. 2338,
Hatorey, Puerto Rico 00919, 809/764-8686. Or contact Sabana
Litigation and Education Project, which does civil rights
education and litigation, 809/759-8832, or 809/751-7485.

Texas. Call Texas AIDS Network, 512-447-8887, or email to
tan@global.org, or write to P.O. Box 2395, Austin, TX 78768.
TAN sends action alerts to its members; for non-members, it
has an Advocates Council, but not all districts are covered
yet.

Current Lobbying Events

AIDSWATCH 95. This annual national event brings hundreds of
people to Washington to visit their representatives in
Congress. This year it will take place Sunday May 21 through
Tuesday May 23. Training will be provided; persons are
encouraged to call for ideas on how to travel to and stay in
Washington on a limited budget.

AIDSWATCH '95 is sponsored by 25 different AIDS
organizations, and coordinated by the National Association of
People with AIDS, 202/898-0414.

Mother's Day card campaign. For more information, contact
Mother's Voices, 212/730-2777. Signed cards, available from
Mother's Voices, should if possible be mailed to that
organization by April 28; they will be sorted and delivered
to members of Congress by Mother's Day.

California AIDS Budget Lobby Day. Hundreds of people are
expected in Sacramento for the 5th annual California AIDS
Budget Lobby Day, Monday May 8 from 10 a.m. to 4 p.m. at the
California State Capitol. Interested persons should pre-
register; for more information, call 213/993-1592. AIDS
Budget Lobby Day is organized by AIDS Project Los Angeles,
California Association of AIDS Agencies, LIFE AIDS Lobby,
Planned Parenthood Affiliates of California, and the San
Francisco AIDS Foundation.

For Background on Congress

Many current books and reference materials on Congress and
politics are published by Congressional Quarterly. To obtain
a catalog, call 800/638-1710 or 202/822-1475.