Yours In The Struggle

ramblings and other thoughts from Paul Kawata (pkawata@nmac.org)

Tuesday, June 29


Building Local Networks That Can Respond To National, State & Local Challenges




I am freaked by the 1840 folks on ADAP waiting lists (as of June 24th)*. I just never thought this would happen in America. I can’t imagine the fear and anger you must feel when you have to piece together your medications through various patient assistance programs. Thanks to everyone who keeps this dysfunctional system working, you are my heroes. This is just one of many issues impacting our work...


Other issues:

  1. Community Based Organizations (CBOs) are closing their door
  2. Many states are significantly cutting their HIV/AIDS budgets
  3. We will get our first National HIV/AIDS Strategy (NHAS)


I hear we may have a solution for this year’s ADAP crisis. It will probably be a one year solution. Not to seem ungrateful and we appreciate any solution that removes people from waiting list, but that means we will have to go back in 2011, 2012 and 2013. I am exhausted by the annual begging. I am scared that one year we won’t find a solution and my friends will not get the right medications or will not get them in a timely fashion. It is time to figure out long term solutions, not to ADAP, but to our movement’s needs for more grassroots organizing that supports national, state and local policies.


I would like to offer this year’s United States Conference on AIDS (USCA) (http://www.2010USCA.org) as a place to bring together CBOs, health departments (HDs) and people with AIDS (PWAs) to have discussions on how to build more local networks that can respond to national, state and local challenges.

If we don’t build more local networks (beyond those in large states or big cities), in a few years we may not have much of a movement to support. Only this morning, we received another email of an agency closing its doors. At this year’s USCA we won’t have any fancy events, it does not seem appropriate, but we will plan many opportunities to listen, build coalitions and define common strategies. Please come prepared to work.

12 national executive directors (more to be announced) will attend this year’s meeting so they can better understand what it means to fight HIV/AIDS on the frontlines. This year we will be joined by

  1. Julie Davids (Community HIV/AIDS Mobilization Project/CHAMP)
  2. Kandy Ferree (National AIDS Fund)
  3. C. Virginia Fields (National Black Leadership Commission on AIDS)
  4. Paul Kawata (National Minority AIDS Council)
  5. Frank Oldham (National Association of People with AIDS)
  6. Patrick Packer (Southern AIDS Coalition)
  7. Julie Rhoad (Names Project)
  8. Michael Ruppal (The AIDS Institute)
  9. Julie Scofield (National Alliance of State and Territorial AIDS Directors)
  10. William Smith (National Coalition of STD Directors)
  11. Carole Treston (AIDS Alliance for Children Youth and Families)
  12. Dana Van Gorder (Project Inform)


These EDs are committed to building effective local responses to national, state and local challenges. This is not to take the place of important organizing that is already happens, but to add to existing networks or to build new ones where none exists. If we are going to address ADAP, National HIV/AIDS Strategy and fight state budget cuts, it has to start in local communities and include CBOs, HDs and PWAs.


I know, it’s so much easier to stay home and let the other guys do it. The problem is that we are running out of other guys. Our leaders and our founders had the courage to stand up when everyone said it was hopeless. Now it’s our turn or maybe it’s our turn again (for all you old queens). What would have happened if Act-Up stayed home, if AIDS Action wasn’t created, if NMAC decided to let the other organizations take care of people of color. We will not agree on all the issues or strategies, but we all know that without strong local organizing our movement will continue to flounder, our organizations will continue to close, and people with AIDS will stay on waiting lists.

We need strong community based organizations. In tough times, the organizations that survive are those that

  1. Diversify their programs and their funding
  2. Innovate, Innovate, Innovate
  3. Have a reserve fund to get them through difficult times

If you don’t have at least one of these things, your organization is in danger. You can have all three and still not survive. This year at USCA we have

  • More Trainings
  • More Funders
  • More National Executive Directors
  • More Analysis Of Critical Policy Issues

More Training

We cannot do our jobs in a vacuum. It is essential to learn about the latest issues, cutting edge techniques, and new policies and/or guidelines. This year’s USCA will have an ADAP track, workshops on Prep, and an examination of policies and guidelines around test and treat. This diversity of trainings is an essential component to USCA.

Not only do we have a diversity of topics, but also they are taught in a language and process for community. Have you ever gone to a lecture and not understood what they are saying? Scientist and researchers have their own language and way of learning, well so does community. All of the presenters are told that their sessions need to be interactive and in a language that community understands. In other words, this meeting targets the way you learn.

More Funders

With money so tight, it is important to get face time with funders. I give good face, its an important part of my job.


USCA brings together many private and public funders. This year we will have officials from SAMHSA, CDC, HHS, HUD, NIH, OAR, OWH, OMH, and others federal agencies. If you don’t know these initials, its time to learn them. Together they provide the most HIV/AIDS funding in America. Where else can you go and see them all at one meeting?

We will also have private sector funders. Right now we can confirm Boehringer Ingelheim. Flowers Heritage Foundation, Gilead Sciences, Merck & Company, OraSure Technologies, Tibotec, and Trimeris/Genentech. In no way does your participation guarantee funding, in fact most requests will be turned down. However, if a funder doesn’t know you, I can guarantee you won’t get a check. This is particularly true for individual donors and corporations/foundations. With many of them, it is about building relationships and trust. There are too many requests for support, as a result, donations often go to agencies they know and respect.

If you come to USCA, come with a strategy. Schedule meetings in advance with leaders important to your organization. Bring materials about your programs and your agency. Work the receptions; don’t just talk with your friends. Reach out to potential donors or other officials who can help your agency grow. Nobody can work a room like Paul Kawata. Its not that I like this task, but I understand that it is part of my job. No matter how good your programs, how great your staff, or how valuable you are to your clients, without money you cannot run your agency.

More National Executive Directors

You may say “who cares?” National organizations don’t help me. Why do I need to meet national executive directors? The simple answer is money and policy.

Who gets included in the room when the final decisions are being made in Congress? How do you get language in legislation that supports the reality of your work? Part of the answer is your national organizations working with local, state or regional partners/ constituents.

Get to know your national organizations. The successful ones understand that you are key to our movement’s success. If we don’t organize in certain critical Congressional districts, we will continue to chase our tail and put Band-Aids on wounds that need stitches.

More Analysis and Strategy

With 1840 people on ADAP waiting lists, CBOs closing their doors, and a new national HIV /AIDS strategy, our community needs more collective analysis and political strategies. How as a community are we going to address these issues? Come to USCA and gather information on other organization’s analysis. Bring your experience and give input into the strategies being considered to address these challenges. With close to 2500 attendees, USCA is a powerful space that brings together diverse segments of our movement. It is not the only space, but it is the largest one. Imagine what we could do if 2500 organizations signed onto our letters. If 2500 CBOs called on their members in Congress.


What if we got all the national organizations to agree to have 2011 be the year that we build local networks. We could have a common theme at all our annual meetings, something like “Building Local Networks That Can Respond To Local, State and National Challenges” (Ok, we will figure out better wording). This could lay the ground work for 2013 reauthorization and/or be the leverage we need in certain critical Congressional districts.

If you want to talk, please call me at 202-483-6622 or email me at pkawata@nmac.org I don’t have the answers, I just want to offer USCA as a space to start thinking differently. Join us at this year’s meeting and be part of the solution.


* ADAPs with Waiting Lists (1,840 individuals, as of June 24, 2010) From The National Alliance of State and Territorial AIDS Directors (NASTAD)

Florida: 361 individuals Hawaii: 9 individuals Idaho: 26 individuals Iowa: 97 individuals Kentucky: 189 individuals Louisiana: 59 individuals* Montana: 21 individuals North Carolina: 769 individuals South Carolina: 175 individuals South Dakota: 22 individuals Utah: 112 individuals



Sunday, June 20

Ramblings from Paul Kawata About The Developing ADAP Crisis

There are lots of activists doing great work to resolve the AIDS Drug Assistance Program (ADAP)Crisis. My ramblings are in no way an indictment of their work, but rather my need to scream my frustration, anger and sadness that we have not figured out a solution.

First let me tell you a story...
1996 was the best and worst year. At the International AIDS Conference in Vancouver, we heard the first results from the clinical trails using combination therapy. Dr. David Ho and proteases inhibitors were all the buzz. Later we would come to find just how effective they would be in prolonging the lives of people with AIDS. It was the relief we’d been waiting for; however, in 1996 we weren’t so sure. There was lots a caution about the new regimen, we had been down this path before only to find out it did improve the length or quality of life (remember mono-therapy with AZT).

As more people came back from death’s door, we realized they might be onto something. It is impossible to describe the change. Watching friends go from 95 pound skeletons back to their normal weight and out of the hospital.

Up until this time, most people diagnosed with AIDS had six months to one year to live. We still had funerals, but they weren’t as frequent. We still visited the hospital, but now our friends came home.

As people living with the virus turned the corner, I was overjoyed yet profoundly sad. Joy for the friends who could start their lives again, and sad for those to died too soon. So many had died. I am still haunted by "if only...."

If only my friend Paul had lived 3 more years. We could have gotten him on the drugs and he might still be here. Now, he would never see his sons graduate or walk his daughter down the aisle. I went to all these occasions as a pale substitute and a grieving queen. If only...

This story is repeated for thousands of us who lost someone too soon. If only we knew they had to stay alive until 1996, maybe we would of worked a different strategy. If only...

Fast forward 14 years, we now have effective treatments, but we also have waiting lists for these drugs. According to the National Alliance of State and Territorial AIDS Directors (NASTAD) we have 1,431 people on waiting lists (as of June 10, 2010). That does not include states that don’t keep lists and/or states that cut their drug formulary.

Hopefully, we only need to hang on until 2014 when healthcare reform is supposed to be fully implemented. It would really piss me off if you died now, just three and half years before we are supposed to get access to the meds. Well I say no more IF ONLYS.

The medications work. I cannot for a second time look back and say “if only” we had survived until 2014. It was enough to do it in 1996 when we didn’t know, now that we know it works, it seems insane that we cannot find a solution to the waiting lists. I mean a solution for the full 3.5 years. This annual ritual of asking for more money does not make any sense. Every year we beg for money to cover medication that will probably be covered in 2014 due to health care reform.

I know this frustration is shared by so many of you.

According to my friend Robert Greenwald, “The National AIDS Strategy, and any other action on the part of our elected officials, will be a sham if it doesn’t satisfactorily address the immediate and ongoing health care and treatment needs of low-income, uninsured people living with HIV and AIDS.”

I refuse to feel helpless in the middle of this potential crisis. So this is what I can do now, hopefully together we can do more in the future:

  • Not repeat the good work being done by other activists.
  • Identify and understand the medical ethics of not covering FDA approved drugs in 2010 that will probably be covered in 2014 when healthcare reform is fully implemented.
  • Work with communication specialists to better understand ADAP messaging. What should be the ADAP message from community based executive directors, people with AIDS and other activists. What is it going to take to get Congress and the Administration to change it’s mind?
  • Convince executive directors of community based organizations that along with being a good manager, they must also be a grassroots activist and a political organizer. To also provide the necessary training to make this a reality.
  • Work with organizations who provide case management to insure that ADAP clients who are eligible get moved onto Medicaid. To provide training if necessary, but more likely to share strategies when clients keep getting turned down for Medicaid, but you know they are eligible.
  • To bring new voices to the table, particularly those from communities of color. To connect us with the pharmaceutical companies, ADAP activists, ADAP Directors and the Administration to figure out how we can best support their work.

I have access to this thing called the United States Conference on AIDS(http://www.2010USCA.org). Even though its only 4 months away, we need to change and adapt the meeting.

  • To offer space to activists doing work on ADAP to share their experience with conference attendees.
  • Create a track at USCA just about ADAP (along with an existing ADAP Plenary).
  • Expand the pre-conference Executive Director’s meeting to include training on grassroots activism and political organizing.
  • To connect the USCA community (People with HIV/AIDS and community based organizations) with pharmaceutical companies, ADAP directors, federal agencies and the good work being done by the ADAP advocacy community.

I don’t know what is going to work, but I know that I cannot sit on the sidelines and watch and wait as more people go on the list. If you feel this frustration, I hope you will join me. If you want to help plan the ADAP track at USCA, please email me at pkawata@nmac.org Do something, do anything. No one should have to die for a battle that shouldn’t exist.*

Stonewall Uprising

Tuesday, June 15



HIV/AIDS Groups Join
Outcry Against Anti-immigrant Measure in Arizona
96 HIV/AIDS groups and allies today issued the following joint statement:


Arizona’s S.B. 1070 takes the state down a path that will lead to racial profiling, discrimination and anti-immigrant extremism. We stand in solidarity with other individuals, organizations and local governments in rejecting the misrepresentation of immigrants put forth in this unjust and ill-conceived measure.

S.B. 1070 essentially declares an entire class of people to be inherently criminal on the basis of their race and appearance. The consequences of S.B. 1070 are grave and troubling: the inevitability of racial profiling and infringement on civil liberties; the strong probability of violence and harassment against individuals and their families; and the reversal of progress toward creating a more inclusive society.

We are united in our determination to stand for political and legislative change that will ensure just treatment of immigrants, people of color, and all people in Arizona. Such justice requires the repeal of S.B. 1070 and the passage and implementation of comprehensive federal immigration reform.

Today we join with groups such as the National Council of La Raza, Asian American Justice Center, National Action Network, Service Employees International Union, Leadership Conference on Civil and Human Rights, the National Puerto Rican Coalition, the League of United Latin American Citizens and many others in the boycott against the state of Arizona until S.B. 1070 is repealed, overturned by the courts, or superseded by comprehensive federal immigration reform.

A Family Affair
Orangeburg, SC

The ACCESS Network, Inc.
Ridgeland, SC

ACT UP Philadelphia
Philadelphia, PA

African American Office of Gay Concerns
Newark, NJ

African Services Committee
New York, NY,

AIDS Alabama
Alabama

AIDS Care Service, Inc.
Winston-Salem, NC

AIDS Community Research Initiative of America
New York, NY

AIDS Foundation of Chicago
Chicago, IL

The AIDS LIFE Campaign
Statewide CT

AIDS Outreach Center
Fort Worth, TX

AIDS Policy Project
Philadelphia, PA

AIDS Project Los Angeles
Los Angeles, CA

AIDS Project Worcester, Inc.
Worcester, MA

AIDS Service Association of Pinellas, Inc.
St Petersburg, FL

Arab Community Center for Economic and Social Services (ACCESS)
Dearborn, Michigan

Asian & Pacific Islander Wellness Center
San Francisco, CA

Aspirations Wholistic Tutorial Services, Inc.
Baton Rouge, LA

The Association of Latino Men for Action
Chicago, IL

Bienestar
Southern CA

Black AIDS Institute
Los Angeles, CA

Black Educational AIDS Project, Inc (BEAP)
Baltimore, MD

Black Men’s Health Project
Atlanta, GA

Daniel Bourne
Kansas City, MO

CALOR- A division of Anixter Center
Chicago, IL

Center for Family Health HIV Program
Hoboken, NJ

Center for Health, Intervention, & Prevention (CHIP)
Storrs, CT

CenterLink: The Community of LGBT Centers
New York, NY

Central City AIDS Network, Inc
Macon, GA

Chattanooga CARES
Chattanooga, Tennessee

Chicago Recovery Alliance
Chicago, IL

Chicago Women's AIDS Project
Chicago, Il

Children’s Hospital Los Angeles
Los Angeles, California

Children's Hospital at Montefiore Medical
Bronx, NY

Christie's Place
San Diego, CA

Coai, Inc
San Juan, PR

Cocaine and Alcohol Awareness Program, Inc
Memphis, TN

Columbus AIDS Task Force
Columbus, Ohio

Community Access National Network
Washington, DC

Community HIV/AIDS Mobilization Project (CHAMP)
New York, NY / Providence, RI

Community Information Center
Portland, OR

CT AIDS Resource Coalition
Statewide CT

Dab The AIDS Bear Project
Fort Lauderdale, FL

donicabempowered, LLC
Las Vegas, NV

FACES Network at SUNY Downstate Medical Center
Brooklyn, NY

Global Forum on MSM & HIV
Oakland, CA

Harm Reduction Coalition
New York, NY

Health Gap
New York, NY, Philadelphia, PA, Washington, DC & Nairobi, Kenya

HIV ACCESS
Alameda County, CA

HIV Care Program
Chicago, IL

HIV Law Project
New York, NY

H.O.P.E
Georgetown, Colorado

Housing Works, Inc.,
New York, NY

Hyacinth AIDS Foundation
Paterson, Trenton, New Brunswick, North Plainfield, Newark, Jersey City, NJ

Illinois Caucus for Adolescent Health
Chicago, IL

Indigenous Peoples Task Force
Minneapolis, MN

International Community of Women Living with HIV North America
Global Argentina

International Community of Women Living with HIV North America
Washington, DC

Jo-Ray House
Chicago, Il

Kentucky HIV/AIDS Advocacy Action Group
Louisville, KY

The LaStraw, Inc.
Greensboro, NC

Latino Commission on AIDS
New York, NY

Liberty Research Group
Rochester, NY

Michael Lee, LCSW
Oakland, CA

Marta Leon-Monzon
Bethesda, MD

Lower East Side Harm Reduction Center
New York, NY

MAACA, Inc.
Tallahassee, FL

Minority AIDS Council of Orangeburg
Bamberg and Calhoun Counties Orangeburg, SC

National AIDS Housing Coalition
Washington, DC

National Association of People with AIDS
Washington, DC

National Latino AIDS Action Network
New York, New York

National Minority AIDS Council
Washington, DC

NCLR/CSULB Center for Latino Community Health, Evaluation and Leadership Training
Long Beach, CA

NorthEast Two-Spirit Society
New York, NY

NYC AIDS Housing Network (NYCAHN)
New York, NY

Pacientes de SIDA pro Politica Sana
San Juan, PR

Partnership Project
Portland, OR

PROFAMILIA
San Juan, PR

Proyecto SOL Filadelfia
Philadelphia, PA

Recovery 2000, Inc.
Chicago, IL

Seattle HIV/AIDS Planning Council
Seattle, WA

Servicios de La Raza
Denver, CO

SisterLove, Inc.
Atlanta, GA

TII CANN
Washington, DC

Test Positive Aware Network (TPAN)
Chicago, IL

Total Health Awareness Team
Rockford, IL

Treat Me Right, Inc.
Bronx, NY

Tri-County Health Coalition of Southern Indiana
New Albany, IN

United African American Ministerial Action Council
San Diego, CA

Us Helping Us, People Into Living, Inc.
Washington, DC

U.S. Positive Women's Network (PWN)
Oakland, CA

Voices Of Community Advocates and Leaders (VOCAL)
New York, NY

Voix La Tortue
North Miami, FL

Who’s Positive
Charlottesville, VA

Women Organized to Respond to Life-threatening Disease (WORLD)
Oakland, CA

Women Together for Change
U.S. Virgin Islands

Sunday, June 13

Carl bean/I was born this way (club mix )+INSTRU

Carl Bean - I was born this way

Tuesday, June 1

Save The Date: HPLS 2010


The 2010 HIV Prevention Leadership Summit (HPLS) will be held December 12-15, in the nation's capital, Washington, DC.

This year's Summit is specifically designed for grantees funded by the Centers for Disease Control and Prevention, Division of HIV/AIDS Prevention - state and local health departments, community planning group (CPG) members, capacity building assistance providers, community-based organizations, and other interested HIV prevention partners - and will feature workshops, discussions and plenary sessions.

The Summit will offer AIDS directors, program managers, executive directors, HIV prevention program staff, CPG members, and other HIV prevention partners a forum to disseminate and exchange information to enhance their program planning and management with innovative strategies to for implementing HIV prevention programs. Attendees will also receive important information, skills building, and opportunities to share lessons learned.

The tracks for this HPLS are very different from previous years.

Health Departments
Erica Dunbar (egd8@cdc.gov) and Joy Mbajah (jmbajah@nastad.org)

Community Planning Groups
DaDera Moore (bci0@cdc.gov) and Cyndee Clay (CyndeeClay@HIPS.org)

Community Based Organizations
Melanie Sovine (IHU9@cdc.gov) and Kim Johnson (kjohnson@nmac.org)

Capacity Building Assistance
Olivia Marr (oag0@cdc.gov) and Adora Iris Lee (alee@aed.org)

Be sure to keep visiting the 2010 HPLS website – http://www.2010HPLS.org - for updates and information on this year's:
  • Agenda
  • Keynote Speakers
  • Participant Registration
  • Exhibiting and Advertising Opportunities
  • … Much More!