NAPWA Aims to Reshape U.S. AIDS Advocacy

via POZ.com by David Ernesto Munar

...While a reorganized and reconfigured federal enterprise against HIV/AIDS is desperately needed, so are changes in the way HIV advocacy is nurtured, mobilized and deployed across the country...

Read the rest.

World AIDS Delay or Why We Really Need, and May Even Get, A National U.S. AIDS Strategy

by Julie Davids on RH Reality Check

On November 20, over 1000 low-income people of color living with HIV came to the 100 Days to Fight AIDS rally to stand up for the ambitious HIV/AIDS platform under which Obama campaigned for president, including his pledge for a National AIDS Strategy. 100 Days to Fight AIDS Rally100 Days to Fight AIDS Rally

For a change, we approached the nation's capitol in the lead-up to World AIDS Day with a spirit of hope. In the coming months, we must continue to push forward with an expectation of more - not just more resources for existing HIV/AIDS efforts, but for a more strategic and more coordinated, comprehensive response that will actually bring down the rate of infection, tackle the epidemic in communities of color and in gay men, and bring dignity and medical care to the lives of all those who are infected.

And change is what we need. Since we last commemorated World AIDS Day, it's been confirmed that HIV/AIDS is worse in the United States than we ever knew.

In August, CDC finally revealed the data showing that incidence of HIV has always been higher than the 40,000-new-infections-a-year figure trotted out for over a decade - and that the epidemic has stubbornly wedged itself into our society at the rate of 56,300 new cases a year.

CDC calls that a stable epidemic.

I call it a travesty.

And think those that are infected are able to get the care they need? Those flaming radicals at the Institute of Medicine have noted that over half of those who should be on AIDS treatment can't get it consistently.

Read the rest.

It’s Time to End the Epidemic at Home: The Need for a National AIDS Strategy

National Leaders Convened Successful,
Historic Congressional Briefing
on Urgent Needs Regarding HIV/AIDS in the U.S.

WASHINGTON, May 21, 2008 -- National leaders on HIV/AIDS convened yesterday in the Rayburn Building to hold an historic Congressional Briefing on the need for a National AIDS Strategy, and Rep. Maxine Waters (D-CA), one of the briefing’s Honorary Congressional Co-sponsors, addressed the standing-room-only gathering along with the panel.

Pictured (L-R) are Panel Moderator Rebecca Haag, Executive Director, AIDS Action; distinguished Panel members David Holtgrave, PhD, Johns Hopkins University; Mario Perez, Director, Office of AIDS Programs and Policy, LA County Department of Public Health; Phill Wilson, Executive Director, The Black AIDS Institute; Kathie Hiers, CEO, AIDS Alabama; Terrell Halaska, Partner at HCM Strategists, former Assistant Secretary for DOE, and Deputy Chief of Staff to Secretary Tommy Thompson; and Marjorie Hill, PhD, CEO, Gay Men’s Health Crisis.

The Call to Action: Establish and Support a

National AIDS Strategy

The United States, a leader in the international response to AIDS, is failing its own citizens in the response to the epidemic at home. More than 25 years since it was first identified, the HIV/AIDS epidemic in the U.S. is characterized by needless mortality, inadequate access to care, persistent levels of new infection and stark racial inequalities.

Half of the more than 1 million people in America living with HIV/AIDS are not in medical care. More than 250,000 people don’t know that they are infected. The percentage of new infections among women has tripled since 1985 to 27%, and AIDS is the leading cause of death among black women aged 25-34. Communities of color are hardest hit. African-Americans represent 13% of the population but nearly half of all new infections. Latinos, at 13% of the population, represent 20% of the new infections. HIV/AIDS remains the #1 health care risk for gay men. Infection rates are higher in some American communities than in Sub-Saharan Africa

The unsatisfactory outcomes from our country’s response have serious human and economic costs. A study published by panelist Dr. David Holtgrave in 2003 found that failure to meet the government’s goal of reducing HIV infections by half would lead to $18 billion in excess expenses through 2010.

It’s time to end the epidemic at home. The federal government must develop a National AIDS Strategy that is results-oriented with measurable outcomes, a timeline and adequate funding. The next President must provide the leadership to make it happen, and Congress must support the National AIDS Strategy and devote the resources necessary for its development and implementation. Individuals and organizations are urged to join the call for a National AIDS Strategy by signing on at www.NationalAIDSstrategy.org.

Honorary Congressional Cosponsors

Representative Tammy Baldwin (D-WI) - Representative Janice Schakowsky (D- IL)

Representative Donna Christensen (D-VI) - Representative Hilda Solis (D-CA)

Representative Eliot Engel (D-NY) - Representative Edolphus Towns (D-NY)

Representative Mike Honda (D-CA) - Representative Maxine Waters (D-CA)

Representative Barbara Lee (D-CA) - Representative Henry Waxman (D-CA)

Organizational Cosponsors:

African American Health Alliance

AIDS Action Committee of Massachusetts

AIDS Action Foundation

AIDS Alabama

AIDS Alliance for Children, Youth & Families

AIDS Foundation of Chicago

AIDS Project Los Angeles

AIDS Survival Project

American Bar Association AIDS Coordinating Committee

amFAR, The Foundation for AIDS Research

Asian & Pacific Islander American Health Forum

BIENESTAR

Balm in Gilead

The Black AIDS Institute

C2EA, Campaign to End AIDS

Cascade AIDS Project

CHAMP, Community HIV/AIDS Mobilization Project

Gay Men’s Health Crisis

Housing Works

Human Rights Campaign

L.A. Gay and Lesbian Center

Latino Commission on AIDS

Log Cabin Republicans

Nashville CARES

National Association of People with AIDS

National Black Leadership Commission on AIDS

NYCAHN, NYC AIDS Housing Network

Project Inform

San Francisco AIDS Foundation

Whitman-Walker Clinic

Treatment Action Group

The Women’s Collective

Us Helping Us

Interactive Online Program Launched to Educate People with HIV/AIDS

Peer-Based Education Geared Especially for Those Newly Diagnosed with HIV

CHICAGO--Two Chicago-area AIDS organizations have just launched an innovative, online educational portal designed specifically for people living with HIV/AIDS.

The AIDS Foundation of Chicago (AFC) and Test Positive Aware Network (TPAN) joined forces to create PEERSpeak, an interactive program that provides effective HIV/AIDS education through the voices of people living with HIV. Funded by the National Library of Medicine, the multi-media educational program is especially geared toward people newly diagnosed with HIV as well as agency staff new to the field.

“Too often HIV/AIDS information is presented online in dry, technical language that fails to resonate with the learner,” said AFC Vice President David Ernesto Munar.

“PEERSpeak offers accurate, up-to-date HIV information through the empathetic voice of others living with HIV/AIDS. This is not a lecture; it’s a conversation between peers,” said Matt Sharp, Director of Treatment Education at TPAN.

With pro bono support generously provided by NogginLabs, PEERSpeak utilizes colorful graphics and character-based audio to guide users through five self-care modules, developed primarily by HIV-positive people who are successfully navigating their own HIV diagnosis and treatment.

Users are placed in the role of various HIV/AIDS service providers and follow the fictional “peer” characters through key moments in their treatment- including an initial doctor’s visit, a meeting with a case manager, and beginning their HIV treatment.

The modules cover topics such as finding the right doctor, treatment options and tips, healthy living, the importance of social support, and mental health issues.

“By actively engaging in the care and treatment of another person living with HIV, users are forced to think critically, which increases the amount of information they retain, and enhances their learning experience,” said Rev. Doris Green, AFC’s Director of Community Affairs.

The multi-format presentation also allows individuals with low literacy skills and cognitive disabilities to use the modules for self-education and service referrals.

“The beauty of PEERSpeak is that it’s anonymous, user-friendly, and available to anyone with computer access,” said Sharp.

PEERSpeak is also designed to help service providers improve their skills assisting people with HIV/AIDS. AFC already plans to use the “Navigating the System” and “Treating HIV” modules as training tools for case managers.

PEERSpeak will be hosted at the AIDS Community Website. The modules can be accessed there.

Read the Chicago Tribune's health blog item about PEERSpeak here.

Viral Marketing

Check out Sexual Health Xchange's David Munar's first blog post for the Prevention Justice Mobilization below. ThePJM is in full force at the National HIV Prevention Conference currently underway in Atlanta. Click their blog regularly for full, ongoing commentary and analysis of the proceedings... in other words, for all the dirt. If you are in Atlanta, check out the LifeLube post on the march/rally that will be "shining a light" tomorrow, Tuesday, December 6 beginning right across from the Hyatt where the conference is happening.

by David Munar

Resolute in its decision to delay the release of alarming new HIV infection estimates, the Centers for Disease Control and Prevention (CDC) kicked off the National HIV Prevention Conference amid widespread anger and concern that the nation may be losing ground in the fight against HIV/AIDS.

With speculation mounting about the motives and content of CDC's unreleased data, official speeches of compassion and urgency received polite applause from the hundreds of assembled participants who seemed either unmoved or unconvinced.

Remarks from the openly HIV-positive co-chair of the HIV Advisory Committee for CDC and HRSA electrified an otherwise sedated opening plenary. Acknowledging a need to voice what might otherwise not be said, Jesse Milan Jr. (right) told the audience the time had come for the U.S. to develop a national strategy against HIV/AIDS-something federal contracts require of developing nations that accept U.S. taxpayer money for AIDS relief.

Read more.

"We have a moral imperative to do much more, and do it much better."

“The loss from HIV/AIDS is almost beyond understanding. This is a fight for people’s lives. We have a moral imperative to do much more, and do it much better.”
– John Edwards

Click here for John Edwards' document released Spetember 18 in which he commits to creating a national HIV/AIDS strategy to fight AIDS domestically. Document can be found on the National AIDS Strategy website.



Sign yourself and your organization onto this national call to action for a National AIDS Strategy!

[from the National AIDS Strategy site]

AIDS is a national crisis. The next President of the U.S. should develop a results-oriented AIDS strategy.

The wealthiest nation in the world is failing its own people in responding to the AIDS epidemic at home. Consider that in the U.S.:

• Every year, 40,000 people are newly infected with HIV. The HIV infection rate has not fallen in 15 years.
• Over a million people are living with HIV. In 2002, an estimated half of people living with HIV/AIDS were not in care.
• African Americans represent 13% of the population but nearly half of all new HIV infections. In 2004, HIV/AIDS was the leading cause of death among black women ages 25 - 34.

The unsatisfactory outcomes from our country’s response to AIDS have serious human and economic costs. A study published in 2003 found that failure to meet the government’s then goal of reducing HIV infections by half would lead to $18 billion in excess expenses through 2010.

The U.S. must develop what it asks of other nations it supports in combating AIDS: a national strategy to achieve improved and more equitable results.

To be effective, a national AIDS strategy should…

• Improve prevention and treatment outcomes through reliance on evidence-based programming
• Set ambitious and credible prevention and treatment targets and require annual reporting on progress towards goals
• Identify clear priorities for action across federal agencies and assign responsibilities and timelines for follow-through
• Include, as a primary focus, the prevention and treatment needs of African Americans, other communities of color, gay men of all races, and other groups at elevated risk
• Address social factors that increase vulnerability to infection
• Promote a strengthened HIV prevention and treatment research effort
• Involve many sectors in developing the national strategy: government, business, community, civil rights organizations, faith based groups, researchers, and people living with HIV/AIDS

Needed: A national strategy to end the AIDS epidemic

AMERICAblog.com

Needed: A national strategy to end the AIDS epidemic
by Joe Sudbay (DC) · 9/18/2007 08:36:00 AM ET

In June, I read this post by Gabriel Rotello. It was a great piece questioning the idea that the AIDS epidemic was over in the United States. There hasn't been much coverage of the continuing AIDS crisis in this country, but it's far from over. Coincidentally, in July, I got invited to attend meeting to discuss developing a strategy to end the AIDS epidemic in America. To be honest, I hadn't given the subject much thought. But after spending a day with some of the brightest people in the world of AIDS and other fields, I came away believing we need to step up the discussion.

Of course, to end the AIDS epidemic in America requires leadership. And, we're not going to have leadership until we have a new President. That's why the leading AIDS organizations and their allies "have requested that every Presidential candidate commit to developing a results-oriented national AIDS strategy designed to significantly reduce HIV infection rates, ensure access to care and treatment for those who are infected and eliminate racial disparities." What a concept, huh?

Here are the facts from a new site called appropriately enough National Aids Strategy.org,

The wealthiest nation in the world is failing its own people in responding to the AIDS epidemic at home. Consider that in the U.S.:

Every year, 40,000 people are newly infected with HIV. The HIV infection rate has not fallen in 15 years.
Over a million people are living with HIV. In 2002, an estimated half of people living with HIV/AIDS were not in care.
African Americans represent 13% of the population but nearly half of all new HIV infections. In 2004, HIV/AIDS was the leading cause of death among black women ages 25 - 34.

The unsatisfactory outcomes from our country’s response to AIDS have serious human and economic costs. A study published in 2003 found that failure to meet the government’s then goal of reducing HIV infections by half would lead to $18 billion in excess expenses through 2010.

Those are some serious ramifications in both human and financial terms. All of the major presidential candidates are offering their health care plans. Hillary Clinton unveiled her plan yesterday.

Every candidate needs to include a plan to end the AIDS epidemic in America. It's gone on way, way too long.

Orignal post on AMERICAblog here.

More than 100 Organizations Call for a National AIDS Strategy to end the epidemic in the United States

FOR IMMEDIATE RELEASE Contact: Diego Sanchez, APR

617.450.1524, 617.835.1455

dsanchez@aac.org

More than 100 Organizations Call for a National AIDS Strategy to end the epidemic in the United States

Strategies to address the nation’s largest public health challenges, including AIDS, should be part of Presidential candidates’ national health plans

WASHINGTON, Sep. 17, 2007 -- More than 100 organizations from across the country are calling for the next President to commit to ending the AIDS epidemic in America. They have requested that every Presidential candidate commit to developing a results-oriented national AIDS strategy designed to significantly reduce HIV infection rates, ensure access to care and treatment for those who are infected and eliminate racial disparities. The groups issued a “Call to Action” that has been presented to all Presidential candidates. The Call to Action and a list of supporters is available at www.nationalaidsstrategy.org.

“More than 1.7 million HIV infections and over half a million deaths into the domestic AIDS epidemic, our government still does not have a comprehensive plan to respond effectively,” said Rebecca Haag, Executive Director of AIDS Action. “The wealthiest nation in the world is failing its own people in responding to the AIDS epidemic at home. Our country must develop what it asks of other nations it supports in combating AIDS: a comprehensive national strategy to achieve improved and more equitable results.”

The Call to Action asserts that the lack of an outcome-based response to HIV domestically has lead to unacceptable results: half of people with HIV are not in care, there is a new infection every 13 minutes, infection rates have not fallen in more than 15 years, and dramatic racial disparities are becoming even more pronounced.

“America’s response to AIDS is not serving those most in need,” said Phill Wilson, Executive Director of the Black AIDS Institute. “We cannot make significant progress on national AIDS statistics unless government and community efforts better respond to the needs of Black America, and we need a comprehensive national strategy to get there.”

“We need a plan, not a patchwork,” said Julie Davids, Executive Director of Community HIV/AIDS Mobilization Project (CHAMP). “We need to move from a response to AIDS that is often bureaucratic to one that is evidence-based and outcomes-oriented; a response that reaches everyone at risk of infection or needing care.”

The Call to Action statement states that to be successful a national AIDS strategy should:

• Improve prevention and treatment outcomes through reliance on evidence-based programming
• Set ambitious and credible prevention and treatment targets and require annual reporting on progress towards goals
• Identify clear priorities for action across federal agencies and assign responsibilities and timelines for follow-through
• Include, as a primary focus, the prevention and treatment needs of African Americans, other communities of color, gay men of all races, and other groups at elevated risk
• Address social factors that increase vulnerability to infection
• Promote a strengthened HIV prevention and treatment research effort
• Involve many sectors in developing the national strategy: government, business, community, civil rights organizations, faith based groups, researchers, and people living with HIV/AIDS

Mark Cloutier, the Executive Director of the San Francisco AIDS Foundation notes the “enormous human and economic costs resulting from the lack of a focused response to HIV/AIDS domestically. Without action there will be more unnecessary deaths, billions of dollars in increased health care expenses and a significant loss of productivity in our economy. A more effective national response to HIV/AIDS is a critical part of building a stronger and more responsive health care system for all Americans.”

Pernessa Seele, founder and CEO of The Balm In Gilead, said, "The legacy of the next Executive Office resident will be determined by what she or he says and does to move communities and this country from where we are - in crisis because of HIV/AIDS - to where we want and need to be - a world leader in the advancement of research, testing, treatment and eradication of HIV/AIDS at home and abroad."

"It is unconscionable that the United States, which has all the necessary resources to end the AIDS epidemic, does not have a comprehensive plan to stop AIDS deaths, reduce infections, and get people the medical care that they need," said Robert Bank, Chief Operating Officer of Gay Men's Health Crisis, (GMHC) in New York.

“We want the American public to know that the knowledge and strategies needed to end the nation’s HIV/AIDS crisis already exist,” said David Ernesto Munar, vice president at the AIDS Foundation of Chicago. “Strong national leadership can change the course of the epidemic.”

AIDS advocates and leaders all over the country are currently contacting their colleagues in civil rights, social justice, and health care organizations urging their endorsement and support.

All organizations and individuals concerned about America’s AIDS

crisis are encouraged to sign the Call to Action at www.nationalaidsstrategy.org

Call to Action for a National AIDS Strategy

Please endorse the Call to Action for a National AIDS Strategy.
ORGANIZATIONS and INDIVIDUALS are asked to sign on.

Background:
Twenty six years into the AIDS epidemic, the United States still has no comprehensive strategic plan to bring down HIV incidence, increase access to HIV care, and reduce racial disparities in the epidemic. The wealthiest nation in the world is failing its own people in responding to the AIDS epidemic at home: the number of annual new HIV infections has not fallen in 15 years and, as of 2002, an estimated half of people living with HIV/AIDS were not in care. African Americans represent 13% of the population but nearly half of all new HIV infections.

The next President of the United States must develop a results-oriented National AIDS Strategy designed to improve the outcomes of our national response to AIDS.

To sign the Call to Action, click here. Both organizations and individuals!

Groups endorsing the Call to Action so far include:

AIDS Action

AIDS Action Committee of Massachusetts

AIDS Foundation of Chicago

AIDS Vote!

The AIDS Institute

The Balm in Gilead, Inc.

Black AIDS Institute

Campaign to End AIDS

Campaign to End AIDS – Florida

Community HIV/AIDS Mobilization Project (CHAMP)

Gay Men’s Health Crisis

Housing Works

National Association of People with AIDS

San Francisco AIDS Foundation

We Won’t Treat, or Prevent, Our Way Out of the Epidemic

by Gregg Gonsalves


AIDS and Rights Alliance for Southern Africa

Cape Town

02 August 2007

“We won’t treat our way out of the epidemic” is the latest AIDS-meme, a tiny bit of an idea, which has made it way into the comments of leaders of UN agencies, august economists, noted journalists and “experts” on Africa. You know who you are-you’ve been infected by this rhetorical virus and you can’t stop talking about it.

As a treatment activist, I find this phrase highly annoying, though not for the reason you’ll all leap to assume: that as a person living with HIV, who has fought for treatment most of my adult life, I find it “anti-treatment,” but because despite some of the truth embedded in this remark, it makes certain assumptions that are absolutely false. As someone who has seen many friends, relatives and colleagues die from the disease, I find the chattering class’ latest conceptual fad an utter simplification that can only come through myopia and the distance from the disaster—from the hillside above the battle, all those soldiers do look like sheep.

We won’t treat our way out of the epidemic. Well, what does this mean? Since it’s a phrase, not a fully-fledged argument, let’s try to see how the phrase and its variations get used.

We won’t treat our way out of the epidemic. Well, the phrase’s most obvious interpretation is meant to tell us we have too many people living with AIDS to sustain on antiretroviral and other AIDS medications for the course of their lives. Yes. Getting the 40 or so million people living currently with HIV on ARVs and keeping them healthy, while more and more people get infected, and thus need treatment as well, is unsustainable, and probably impossible, for lots of reasons.

But then again, if Americans keep getting fatter and fatter, the costs of chronic care for diabetes, heart disease, cancer and other sequelae of obesity will eventually become unsustainable as well. North Americans, Europeans and the Japanese are also quite fond of smoking, but no one has talked about rationing care for lung cancer, heart disease and emphysema, or worse yet, making claims such as William Easterly from New York University does, which come close to saying that AIDS treatment really shouldn’t be done at all.

Easterly’s thesis on AIDS treatment is essentially an exhibit in a larger case he is making against the lords of poverty--the academics, UN officials, the NGO bureaucrats, prime ministers and presidents of rich countries--who have piled up grandiose plans for “saving Africa” and other poor regions of the world, and have achieved very little for all their billions and billions of dollars in foreign aid. Think smaller, focus on local solutions, goes Easterly’s mantra, and frankly, it makes sense to me.

But he’s wrong on treatment. I won’t get started on the factual mistakes in his recent New York Review of Books article (e.g. ARVs offer 4-5 years of additional life expectancy to those with HIV/AIDS), but ask him to stop having a conversation with Jeffrey Sachs and talk to people like Zackie Achmat, or even Beatrice Were who he mentions in his NYRB review of Helen Epstein’s new book, The Invisible Cure: Africa, the West and the Fight Against AIDS. The case I’ll make later in this piece is that for all the fanfare of “universal access” or the WHO’s 3x5 campaign, the push for AIDS treatment is something more modest than he supposes, more locally derived, and indispensable to the fight against HIV/AIDS, to the success of HIV prevention. Easterly’s flaw is the same one that he hurls at Sachs—he’s not listening, he’s pushing his own “big idea” instead of talking to people on the ground about what treatment means for them and their communities.

We can’t treat our way out of the epidemic. Well, an alternative interpretation of our meme-du-jour could be: we can prevent our way out of the epidemic. In fact, the case made in Easterly’s article in the NYRB, in Epstein’s articles in the same journal (which are the basis for her book, and which is slowly making its way to me from Amazon.com in the USA), that is made by Kevin de Cock at WHO in speech after speech, that is made by Alex De Waal in his book, AIDS and Power, is that HIV prevention is the way to go. Treatment has hijacked the response against AIDS, let’s stop this foolish investment and pour money into HIV prevention and then we’ll be cooking with gas. We just need to circumcise more men, test more people, give them more information or more condoms, tell them to stop sleeping around (at least concurrently), and then we’ll see a real change in the course of the epidemic.

Hello.

Has anyone looked at the data on HIV prevention lately? We’ve failed miserably despite huge investments. This is the dirty little secret of HIV prevention, as it is currently envisioned and implemented. For all the resources---and I’d bet Professor Easterly, the resources expended on prevention have been far more than expended on treatment in the developing world over the past 26 years---we’ve delivered very little for our money.

So, what is to be done?

Well, first, can we stop this ping-pong tournament of how we think about AIDS:

prevention-treatment-prevention-treatment-prevention-treatment

It’s making me dizzy watching the field oscillate maddeningly between these two supposed choices.

Second, I would make the case that HIV prevention needs a radical re-think. I believe Easterly and Epstein do start this process, in the critique of schematic approaches to prevention, such as “ABC”, particularly the reflexive and narrowly conceived promotion of abstinence or condoms; of the multi-million dollar investments in social marketing initiatives like Lovelife, which have little relationship to the lives of the young people most at risk in South Africa; and in a realization that communities may just have some of the answers that have eluded the experts for two and a half decades. But Easterly’s and Epstein’s articles don’t go far enough in their critique and Epstein in particular seems to be hanging onto concurrency and interventions targeted at this kind of sexual behaviour as a new talisman of sorts.

When Easterly keeps harping on the notion that the push for AIDS treatment is somehow donor-driven, or somehow an emanation from the Jeffrey Sachs-es of the world, I cringe, because I see him more interested in a debate with a fellow academic than a simple look at history. For those of us who have fought for AIDS treatment, we know that it was our fellow PWLHAs in Brazil, in Thailand, in South Africa, in Uganda, who first raised the call for treatment. They saw the rest of us in the “North” getting drugs that were saving our lives and said that their lives were worth the same as ours, no more, no less. Easterly, as a newcomer to AIDS, somehow missed the absolute refusal, as late as 2000, of the leaders of UN agencies, donor nations and foundations, public health institutions, governments and the big international NGOs to acknowledge these calls until people literally went out on the streets to demand their right to health, to life. The push for AIDS treatment began as a local response to the absolute devastation of our colleagues’ communities, not a call to treat the world, but to treat them, their brothers, their sisters, their daughters, their sons, their mothers, their fathers.



What if the future of HIV prevention is about galvanizing communities in the same way that Grupo Pela Vidda, the Thai Network of People with AIDS, the Treatment Action Campaign, and dozens of other quite small groups around the world have done around treatment? These are the modest, local efforts that Easterly prizes so dearly, but is frankly oblivious to when it comes to AIDS treatment.

What if instead of measuring our success in the number of condoms distributed, people given HIV tests, couples counselled about fidelity by NGOs, we measured it in communities mobilized around stopping women from being raped, creating educational opportunities for young people, economic opportunities for women and for men so they don’t have to go work in the mines, stopping substance users from being locked up and tortured in the name of drug treatment, ensuring that people have a decent roof over their heads, for the establishment of clinics for STDs and yes, for AIDS treatment? What if communities in Africa and elsewhere started saying, the world you take for granted Professors Easterly and De Waal, Dr. De Cock, Ms. Epstein, is the world we deserve too, where you don’t worry about getting health care, having no recourse to justice if you’re raped, where you can get a good education and a good job if you work hard and you can go home at night to a nice warm bed.

This is what I see the Beatrice Weres, the Zackie Achmats and the other little known activists fighting for across the globe-it’s not about prevention vs. treatment, it’s about making people’s lives better in their communities from the ground up. As Easterly and Epstein rightly note, it’s when communities mobilized that we’ve seen infections go down in Uganda. A friend of mine from Berkeley, California, who once upon a time ran a big HIV prevention programme, once sat down with his staff over after-work drinks to figure out how many infections they had averted: a handful they supposed. This friend also tracked the rise of HIV prevention programmes in San Francisco with the drop in HIV infections in that city in the 1980s. The decreases in infections came before the programmes even started. The “truth” that Epstein discovers in her book and Easterly mentions in his article, is something we’ve known for a long time, but the “experts” have ignored us:

The Ugandan AIDS activist Beatrice Were told Epstein: "As a woman living with HIV, I am often asked whether there will ever be a cure for HIV/AIDS, and my answer is that there is already a cure. It lies in the strength of women, families and communities who support and empower each other to break the silence around AIDS and take control of their sexual lives."

So, the debate isn’t about treating our way or preventing our way out of the epidemic. It’s about getting people to stand up for themselves and ask for what they need. The folly of those who complain about the push for access to treatment is that they misrecognize what is happening as simply asking for pills or, since they only move in elite circles, see the drive for access to ART as Bono’s, or Jeffrey Sachs’ or Paul Farmer’s campaign, not one about the dignity of ordinary people claiming their basic human rights.

So, treatment and prevention are inextricably linked, but not in the facile ways that appear in UN documents and are ridiculed by the likes of Professor Easterly. I’d ask the “experts” to imagine our lives-of those of us who lived in New York or San Francisco’s gay communities in the 1980s, in Kampala during the same decade, in Cape Town or in African-American communities in the USA now, and think about the sheer terror we experienced and continued to experience. We’ve never had the luxury to put what was happening to us in separate boxes-today, we’re fighting for treatment, tomorrow, we’re fighting for prevention. Whether it was Act Up New York demonstrating at the FDA for speedier drug approval, or against the Catholic Church’s stance on condoms, or the Treatment Action Campaign’s marching for ART treatment or marching against gender violence in the townships like Khayelitsha here in Cape Town, we realized that our governments, our terribly venerable institutions couldn’t give a damn about us. We were fags, we were junkies, we were black, we were poor. And we were telling them otherwise, that our lives mattered, that we were not expendable, disposable people. And we were mobilizing to help ourselves, to craft our own way out of the hell that they had helped to create for us.

So, if we continue to see the fight against AIDS as a debate between Bill Clinton and Bill Easterly, we are doomed. And somehow I feel as if they’d like to keep it that way. If the fight against AIDS turns into local political struggles, about local accountability of governments and institutions, about providing basic services to address people’s basic needs, things get very uncomfortable for certain people. If AIDS is a political crisis first and foremost, leaders of all sorts have a vested interest in keeping things from boiling over. The AIDS International, which Easterly discusses in his NYRB article, has been responsible, not for picking the “wrong” set of interventions as Easterly supposes, but for a graver sin: for creating a system that has depoliticized AIDS, put it in the realm of experts, technical advisors, reduced it to bean-counting, made it about discrete interventions that can be easily packaged for donors and their grantees and sends communities chasing their tails to make sure their “deliverables” are delivered.


I mentioned recently to some colleagues that I would be willing to put my hypothesis to the test. Let’s randomize three sets of communities: in one we’ll dump lots of condoms and make sure pharmacies are stocked with ARVs and OI drugs, in the second set, we’ll also offer these commodities, but we’ll make a five-year investment in building up a cadre of activists, who know about their rights and can advocate for them. In fact, to sweeten the deal for Kevin de Cock and Helen Epstein, we’ll make sure that there is routine testing for HIV in medical settings, we’ll circumcise all the men and there is widespread information dissemination about the dangers of concurrency in both intervention arms of our study. In the last set of communities we’ll make no additional interventions, it will be our placebo group.

For me, this study, at least retrospectively and with historical controls, has already been done--you can read about it in the unwritten history of AIDS, the stories of the activists from 1981 to the present day who have given their lives to helping their communities, to seeing that people had the treatment they needed for AIDS, for TB, for asthma, for diabetes, for when someone is sick, you try to help them get better; could get condoms and clean needles, even though their priest or their government said that these kinds of things promoted bad behaviour; had someone to go to court with them when their husband or their john beat the shit out of them; someone had a bed for the night instead of sleeping out on the streets; worked in the most degrading jobs to see that their kids could go to school because when they died of AIDS, they knew an education would provide some hope for their children’s future.

I once saw a movie called La Historia Oficial, The Official Story, about a schoolteacher in Argentina, who wakes up to realize what had happened in her country during the 1970s and 80s. At some point in the film, one of her students writes on the blackboard that “history is written by assassins.” Well, perhaps the history of AIDS hasn’t been written by assassins, but it’s still written by the “big” men and women, and tells the “official” story.


Once day we’ll hear the real tale of the AIDS epidemic, which is, in part, hopeful, even in places where hope was least likely, has seen success where success was thought impossible. So far, the last reel of the story though seems quite sad: there is a swanky party where old presidents, university professors, writers, philanthropists, high-level government and UN officials mingle sipping cocktails, talking about how terrible the AIDS epidemic is, and their own new theories for helping “those people.” Meanwhile, the lights go out in a small house in a small country far, far away, where the one person who spoke up, spoke out fearlessly for her community, decides it’s better to go work for the government, so she can feed her children; or where a young man who has been fighting against rape in his community just can’t take the strain of the working 16 hours a day as a volunteer; or where the last activist, who told her friends and family to know their status and remain faithful to their partners, died of AIDS because of a meme, an idea generated in Geneva or New York, which decided quite on its own, that pills were the last thing she needed.

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More than 40 million are living with HIV worldwide, and each year more than three million people die from AIDS. By 2010, there will be as many as 20 million children orphaned by AIDS. The infection rates in some impoverished countries are greater than 33%, and the impact of AIDS poses major humanitarian challenge to the United States. Within the United States, HIV/AIDS is disproportionately affecting people of color, and prevention and treatment are still underfunded; strong leadership is needed to defeat the epidemic. Global health diplomacy provides one key opportunity to renew internationally our ties to the world community. America's place in history will be determined by how well we respond to this still-expanding crisis at home and abroad.

HIV Prevention is a Marathon, Not a Sprint

Gus Cairns Responds to the CDC's "Lowered Expectations"

[see previous post on this topic here]


I personally think the CDC is realistic about this, and prevention advocates unrealistic. It would be very difficult to reduce the number of new cases over the next five years by 50% for several reasons. Reducing HIV incidence in an established epidemic is quite a tough nut to crack. For instance, see the forecasts that serosorting was behind an apparent 50% reduction in incidence in San Francisco gay men a couple of years ago. On further investigation it was found that the reduction in incidence wasn’t anything like as big as at first seemed, because behaviour changes compensated. Incidence in urban gay male populations in the US and Europe has been remarkably steady since 1999, varying between 2.5% and 4% a year but usually sticking around 3%.

Part of the problem is that if 50% of new infections come from people in acute infection themselves, they’re the people least likely to know they’re infected and least likely to change behaviour accordingly.

Partly it’s because the epidemic has its own momentum – the more people you have with HIV, the more people there are to infect others (at least until you reach ‘saturation point’ in a particular population and there are fewer at-risk people left to infect that ones already infected – this may be starting to happen in the African-American population).

And partly it’s because I don’t think the ‘HAART effect’ on increased lifespans for PLWHAs has yet fully worked its way through the epidemic curve: if people with HIV start living 30 years with the virus instead of 3, they have to be 10 times safer in order to infect less than one other person (the magic figure that makes the epidemic shrink, not grow).

Even in places like Uganda, reductions in prevalence (we find) have been more about people dying en masse of AIDS and much less about an actual decline in infections.

I’m also uncomfortable with calls for unrealistic targets to be retained because “even if [they’re] just rhetorical, to fight for more programs and more funding.”

Well, the history of HIV is peppered with examples of people crying doom and disaster that never happens - and forecasting bright dawns that never show (do I have to utter the words ‘HIV vaccine’?) If you keep doing this, it becomes ‘crying wolf’ and the criers become discredited. If the scientific evidence suggests 10% is achievable and 50% isn’t, then go with the 10% I say. [There are exceptions to this rule – such as, some would argue, the ‘3 by 5’ campaign – but even in that case not achieving 3 million on treatment by 2005 was seen by many as a failure by the WHO, even though achieving half that could be seen as a success].

It must never be about fighting “for more programs and more funding” but for effective programs and effective funding.

The real reason we should be fighting for prevention programmes is not because they’ll make things a lot better, but because if you don’t have them, things will get a lot worse, and often in unexpected ways and in unexpected populations. Examples of that one abound!

Prevention is now a marathon, not a sprint. Behaviour change in an established epidemic (as opposed to a sudden emergency, as in the 1980s) can take generations to achieve. It took 50 years to halve the proportion of the population who smoke. It may take as long to reduce – in any lasting way – new HIV cases. We’re in this – barring some magic-bullet prevention technology – for the long haul.
---Gus www.guscairns.com

Two Months After Launch of African American HIV Prevention Strategy, CDC Proposes to Severely Narrow Vision of Reducing HIV Transmission Rates in US

COMMUNITY HIV/AIDS MOBILIZATION PROJECT (CHAMP)


For immediate release: May 9, 2007
Contact: Sean Barry, 212.937.7955, x 5

Overdue strategic plan slashes goal of halving 40,000 annual new infections, settling for a mere 10% reduction; activists call on administration to invest in evidence-based programs and a robust research agenda to restore hope of significant improvement

Addendum to CDC HIV Strategic Plan: http://www.champnetwork.org/media/chac.5.07.pdf

Atlanta, GA – A new Bush administration HIV/AIDS “strategic plan” distributed by the Centers for Disease Control and Prevention (CDC) is being criticized as a retreat from CDC’s previous goals. The scaled down plan comes only eight weeks after CDC launched its “heightened response” on the endemic epidemic in the African American community.

“The administration’s HIV prevention plan denies desperately needed resources to bring down the rate of new infections in our country. They’ve lost credibility and can no longer pretend we can tackle big problems with budget cuts,” said Ruth True, a prevention worker and CHAMP member in Austin, Texas.

“Instead of rising to the challenge and rectifying our nation’s shameful response to the epidemic, the administration is revising its goals to reflect its inadequate response. They’re trying to create the illusion that we’re making progress by moving the goal posts closer. How can you do this and honestly say you are ’heightening the response’ against HIV/AIDS in my community, where nearly one in two Black gay men are infected?” said Mark McLaurin, member of the Executive Committee of the National Black Gay Men’s Advocacy Coalition and CHAMP’s board of directors.

On March 8, CDC announced “A Heightened Response,” a new African American-specific HIV prevention strategy. The initiative was lauded by some for its vision and its recognition of the epidemic in Black gay men and other men who have sex with men. But advocates wary of new initiatives without significant funding to implement them met it with doubt.

The lack of a dedicated funding stream for comprehensive sex education and maintaining the ban on federal funding for syringe exchange programs are also cited as barriers to achieving national HIV prevention goals. “We can dramatically reduce the number of new HIV infections, but only if we apply what we know works based on over 25 years of prevention experience,” said Ruth True.

“It may be good to recognize that the previous plan was pie in sky since it included no realistic support or means to achieve its goals, but the newly proposed plan is even further from the vision of success. It does nothing to provide or push us along the real steps we need to take to end the AIDS epidemic,” said Dr. Walt Senterfitt, a former CDC staff person and chair of CHAMP’s board. “We need to take action on a new vision of really breaking the back of the epidemic in our country. That starts with funding programs that we know work – like syringe exchange and comprehensive sexuality education. It would also mean scaling-up research to fill our knowledge gaps, and truly committing to address core issues that increase HIV risk in hard-hit communities, like the overflowing prison system, anti-gay violence, and the lack of safe housing.”

CHAMP is a national HIV prevention activist and training organization with offices in New York City, Los Angeles, and Providence, RI.

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