Julie Davids's blog

New AIDS Czar Widely Praised by Advocates

2009-02-26T12:15:26-05:00

Today, the Obama Administration announced the appointment of longtime HIV/AIDS health care advocate Jeff Crowley to head the long-vacant Office of National AIDS Policy (ONAP), which is charged with developing the National AIDS Strategy.

Crowley, M.P.H., is a Senior Research Scholar at Georgetown University's Health Policy Institute and a Senior Scholar at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center.

"This is brilliant," was the reaction of David Munar, who chairs the National Association of People with AIDS (NAPWA), where Crowley worked from 1994-2000. "The Administration made a strategic choice about someone who knows health care above all else, so they got a two-fer: he is passionate about HIV, and he knows health care systems. This means the office will be relevant. He will champion us and our needs in the health care reform process."

Advocates note that ONAP had already gained relevance in the eyes of the Administration due to the AIDS community's work to secure $1.4 million for the development of the National AIDS Strategy (NAS) in the upcoming omnibus budget bill, which is poised go into effect on March 6 when the continuing resolution ends.

The Domestic Policy Council, where ONAP is based, had been eviscerated during the Bush years, and those who have spoken with Council staff have said that they are appreciative of the resources and are committed to the NAS process.

Advocates anticipate that the funding, which has to be obligated (committed to specific spending if not literally spent) by the end of the fiscal year on September 30, could pay for a six or seven staff members for ONAP. It could also go towards the additional costs of establishing a cross-government/community panel, which is the structure that the Coalition for a National AIDS Strategy (of which I am a member) has recommended to develop and monitor the NAS.

"Clearly, health care will be a cornerstone of a successful NAS," noted Chris Collins, "Jeff's appointment is great news and I look forward to working with him to create a NAS that brings more accountability, coordination and an orientation to outcomes in our response to HIV in the United States."

Collins was one of the other candidates interviewed for the ONAP post. For the past week, those involved in Federal AIDS policy had heard that the appointment was imminent, and that a small number of people had been interviewed for the position, including Collins and Jesse Milan, chair of the board of Black AIDS Institute. But many advocates expressed surprise at Crowley's appointment, as there had been no buzz that he was a candidate or they had assumed he would be appointed at the Centers for Medicaid & Medicare Services (CMS).

The White House release cites Crowley's primary areas of expertise as "Medicaid policy, including Medicaid prescription drug policies; Medicare policy; and consumer education and training."

And indeed, those who have worked with him on these issues were clearly excited, even gushing, about the appointment, including Robert Greenwald, Director of the Treatment Access Expansion Project (TAEP).

"I think it's amazing," said Greenwald. "He is one of the most hardworking, diligent, non-ego-involved people I've ever worked with, just a good person. I can't even believe it. He's incredibly plugged into the community."

While Crowley helped to develop the National HIV Testing Day Campaign during his tenure at NAPWA, those who have worked closely with him in recent years do note that prevention is not his main area of expertise.

But Munar, calling Crowley an "instrumental team player," says he expects that, far from having a deaf ear towards prevention, Crowley recognizes its importance, will bring in those who know it well and will talk about it from a health care perspective, emphasizing a cost-savings paradigm that he believes will resonate well.

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

2008-12-01T08:00:00-05:00

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 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.

On this World AIDS Day, let's set down the slogans for a second and take a long sober look at where we are at, and where we need to go.

There's three things we need to do to overcome HIV in our nation:

1) Fund what we know works, like syringe exchange and the provision of HIV/AIDS antiretrovirals and basic health care to all who need it;

2) Stop funding things that don't work, or that cause harm, whether it's Federally-funded stigma promotion, a.k.a. abstinence-only programs; and

3) Figure out what the hell we need to do in the cases where we just don't know.

Even though we know a lot of what we need to do to fight HIV/AIDS, anyone who tells you we know exactly what we need to do to solve the epidemic in this nation - or around the world, for that matter - is either naive or lying.

For example, there's a big disconnect in the fragmented HIV/AIDS service sector between prevention programs and the provision of HIV care. Yet HIV treatment itself is increasingly recognized as a contributor to HIV prevention - when people know their status, are in care, and receiving effective treatment, they are less likely to pass on the virus. But as spread thin as people are who work in either prevention or care, with little time for strategizing or collaboration, there's also additional obstacles to working together based on funding streams, red tape, and a lack of overarching, systematic and measurable priorities in the domestic AIDS sector.

Sound like a complex problem and, well, kind of geeky and bureaucratic? It is.

And that's just one example of why we need a National AIDS Strategy (NAS). A true NAS wouldn't be a re-branding of current HIV/AIDS efforts in the US. It wouldn't even be a label for a new initiative to scale-up our overloaded efforts to combat the epidemic in a nation.

The NAS needs to be a fundamental re-think of how we fight HIV in this country - the plan that moves past the patchwork of current programs and that figures out a better way and assigns responsibility for doing it.

The US global AIDS response (through PEPFAR) is not without its problems but emphasizes target setting, coordination, and accountability for outcomes. These key principles are lacking in our domestic effort. Like PEPFAR, an effective domestic NAS needs to be owned by the government with strong Presidential leadership and present an operational plan.

So what now? Action on the NAS early in the new Administration would cost little but demonstrate decisive action on health issues. The Coalition for a National AIDS Strategy is urging our next President, within his first 100 days, to:

speak publicly about the need to more effectively address our biggest public health challenges, including AIDS at home;

appoint a National AIDS Strategy Panel to develop the Strategy; and

create a White House-level AIDS office and appoint staff to lead on the Strategy.

We need the President to urge the Panel to be creative and courageous, and to stay focused on improving outcomes rather than placating constituencies. We don't need a laundry list to appease everyone, but rather a plan of action to increase our effectiveness. The Panel should identify measures that can be taken quickly, as well as more fundamental changes needed over time. For example, improving coordination of government agencies can be mandated quickly and at no cost.

Even as we push forward towards the NAS, however, we do know much of what we need to embark upon to start to bring the epidemic under control. And it sounds a lot like what we need to do for this whole country to get back on its feet:

Provide health care for all

Ensure housing for those in need (which is what DC Fights Back and allies will be marching for in Washington DC on this World AIDS Day).

Confront the poverty that leads to a whole range of health challenges, including HIV, and that is getting worse by the day as our economy is in free-fall triggered by a generation of greed and inequity.
Invest in American ingenuity, as they say, by supporting a robust platform of uncensored research at and beyond the NIH, rather than turning away a new generation of researchers seeing funding fall way below the rate of biomedical inflation.
Make the inclusion of gays and lesbians in Obama's victory speech a real thing by including LBGT people and our needs in public health and social programs, and by waging a mass public education effort to confront anti-gay and anti-trans bias so no one can be hoodwinked again by Prop 8 campaign style lies.

The change we need for the country is the change we need to fight HIV/AIDS. Let's insist that economic stimulation and health care reform become components of a comprehensive strategy to fight HIV/AIDS, rather than being complicit with this "stable" epidemic that will infect another person every nine minutes on this World AIDS Day.

McCain, Obama Respond to New Numbers on HIV Infection Rate

2008-08-05T08:00:00-04:00

As has been widely reported, CDC has put out a revised estimate of HIV incidence in the United States. This long-awaited data shows an annual rate of approximately 56,300 new cases a year -- 40% higher than previous estimates -- and also confirms a persistent epidemic in Black Americans, and rising rates in gay men and other men who have sex with men.

The revision also includes a back-calculation revealing that, between 1991-2006, infection rates were approximately 25 - 50% higher than the long-held 40,000 annual estimate.

People living with HIV and other HIV prevention justice activists immediately demanded a response from Senators John McCain and Barack Obama, the presumptive nominees for our next President. Both men expressed support for global AIDS funding, which was signed into law by the President this week. But when it comes to the epidemic here at home, they haven't had much to say on the post-primary campaign trail.

McCain has not released an HIV/AIDS platform, and has referred to conservative Senator Tom Coburn (R, OK), as "the guy I really respect" on HIV/AIDS. Obama has previously released a platform on HIV/AIDS that includes support for a national AIDS strategy and other domestic initiatives, but cites Coburn as an example of his cross-aisle collaborators.

On Sunday, the candidates both released statements on the higher incidence estimate.

Obama led with the call for a national AIDS strategy, and went on to talk about "expanding access to testing and comprehensive education programs." Notably, he also cites homophobia as a root cause of stigma.

He also stated that "Combating HIV/AIDS also demands closing the caps in opportunity that exist in our society, causing one reader of a blog post on the statements to ask "hey Sen Obama, are the gaps you're referring to the institutional inequalities like racism, poverty, lack of housing, a healthcare system that only serves the wealthy, and mass incarceration that continue to fuel the epidemic? Hope so!"

McCain's statement says he would "work closely with non-profit, government and private sector stakeholders to continue the fight against HIV/AIDS," but falls short of committing to a national AIDS strategy. He then provides a list of efforts on which to focus, which leads with "reducing drug costs through greater market competition," and adds more general efforts such as "promoting prevention efforts, encouraging testing, targeting communities with high infection rates, strengthening research and reducing disparities through effective public outreach."

A more accurate incidence estimate could serve as a wake-up call. But it's equally likely that this awful news could just fade away from view in a nation that seems to have a bottomless capacity for bias and neglect -- especially when it comes to queer people and people of color.

As with so many issues in HIV/AIDS, we do not have to hunt for a conspiracy to explain how we have found ourselves in this troubling state of affairs. The damning evidence is right out in the open.

Our country has:

no national AIDS strategy
funding for HIV prevention that was flat, and then actually declined
persistent, Jesse Helms-era restrictions on proven means of effective prevention; and
the pernicious intersection of HIV and major social injustices, such as mass imprisonment of the racial and ethnic groups disproportionately impacted by the epidemic as well as the sanction of bias against sexual and gender minorities.

On the day this article is published, it's likely that another American will become HIV positive about every ten minutes -- and over a third of them will be under 30 years old. Will we point fingers at them and cast blame, further fueling stigma?

Or will we -- and our leaders, including our next president -- finally take a long, unflinching look at a country that tolerates bullying and unrelenting violence against LGBT youth, funds ideologically motivated programs in our schools, defunds and suppresses research on sexuality and public health, swells our jails and prisons by locking up unprecedented numbers of people from the racial and ethnic communities hardest-hit by HIV, and has never provided necessary HIV prevention education and tools to any significant percentage of the population?

Keeping What Promise? HIV in an Election Year

2007-11-30T11:54:00-05:00

What should we make of this year's World AIDS Day theme of "keep the promise," when it comes to the epidemic here at home?

Maybe it's meant as encouragement to the adolescents promising virginity in still-will-be-federally-funded-under-the-Democrats abstinence-only programs? Or maybe it's a message to Congress thanking them for not only sustaining the ab-only funding but for their promise of continued under-funding of treatment, support, prevention and research, even as more than one million people are living with HIV in our country? Or maybe it's the promise of the fast-tracked Trojan horse regulations - a promise made with the Bush adminstration's fingers crossed firmly behind its back to "ease" the ban on HIV-positive people seeking to travel to the US, which would actually ensure that HIV-positive visitors will forego any right to later application for legal status?

Or maybe it's the near-promise that we'll have news soon in the new year that the annual infection rate in the United States is significantly higher than the 40,000 estimate used for the past decade, with the new estimate rumored to be 25-50% more.

Wow, it's hard to pick.

To get half-full for a moment, there is the promise of increasing support for a National AIDS Strategy.

You may have figured that the world's wealthiest nation, which also has the world's worst AIDS epidemic in a "developed" nation, would have a thought-through, coordinated, comprehensive plan to combat said epidemic.

Um, no.

But candidates Clinton, Edwards, Kucinich, Obama, Richardson have all now endorsed the call for a national plan, as have the major national AIDS groups in the nation and scads of local HIV organizations.

(And the Republican pack of contenders? Well, they all refused or ignored the AIDSVote candidate questionnaire compiled by a critical mass of US AIDS groups that highlights the national strategy ask.)

The need for coordination and strategy is perhaps most clear when it comes to HIV prevention. And the bi-annual National HIV Prevention Conference is happening December 2 - 5, right after World AIDS Day. With over 3000 people gathering, there's likely be a big buzz about that anticipated increase in US HIV incidence and what it may mean.

But CDC's staying moot about their new numbers, waiting to get the green light for publishing their findings in one of the well-recognized peer reviewed medical journals. They distributed a letter on Monday about its non-release of the data, asserting that "the HIV prevention needs and challenges in the United States are too great to allow misinformation to guide program decisions."

This statement rang hollow for a lot of AIDS community members, including Mark McLaurin of the National Black Gay Men's Advocacy Coalition and the New York State Black Gay Network, who was moved to remark,

It's bitterly ironic to hear that a government that is still funding abstinence-only-until-marriage programs that say you can get HIV through sweat and tears is asking us to wait for crucial information because they fear misinformation, yet somehow they are going to reduce the disparities that are decimating my community. All I want for this World AIDS Day is the truth.

The Prevention Justice Mobilization (PJM) will be a big presence at the conference, calling on all political leaders, public health officials and electoral candidates to adopt comprehensive strategies to confront the inequities at the root of the complex HIV/AIDS epidemic.

The highlight will be the Unity for HIV Prevention Justice Rally and March on Tuesday, which will literally spotlight HIV prevention in a vocal, flash-lit march led off with giant interlocking puzzle pieces that show the components of a truly comprehensive and effective HIV prevention policy.

The PJM and communities across the country are calling for a paradigm shift in understanding the epidemic: HIV transmission is a social condition that requires systemic change. For example, the current issue of AIDS and Behavior presents 18 peer-reviewed articles examining the role that homelessness and housing instability play in increasing HIV risk, and in worsening health outcomes for those already living with HIV. Other systemic issues include high rates of incarceration, lack of health care, unemployment and low wages, and stigma.

Prevention justice resonates with the real-life experiences of people with HIV and those in their communities, including Waheedah Shabazz-El of ACT UP Philadelphia, who explains:

When there's a cholera outbreak, you don't blame people for drinking bad water! You treat the people who contracted the disease, and then you clean the water supply. We need to do the same with HIV. We need to stop blaming people for their behaviors and do what is necessary to ensure that everyone with HIV gets the treatment they need and individuals get access to the best prevention information and strategies. But we also need to change the environmental factors, such as widespread incarceration, poverty and violence, that lead to disparities in disease.

But will it resonate with the incoming administration? It won't be easy to get this sea change through, but a comprehensive and accountable plan that acknowledges the root causes of the epidemic is only way we'll have a shot at keeping the promise of uprooting HIV/AIDS in our country.

From Breakthroughs to Reality: The Health Care Link in High-Tech HIV Prevention

2007-03-02T08:00:00-05:00

Julie Davids is the Executive Director of CHAMP (Community HIV/AIDS Mobilization Project).

Twenty years ago, AIDS was burning through the country and decimating whole communities while Reagan fiddled away. ACT UP New York burst onto the scene with a rallying cry of "drugs into bodies," shutting down Wall Street over the price of AZT, the only treatment and the most expensive drug ever marketed.

The group grew into a powerful and innovative social force—with hundreds of independent chapters worldwide—and racked up hard-won victories from the accelerated approval of the drugs that turned around the epidemic in the U.S., to changing the very definition of AIDS, to include the conditions seen in women and injection drug users so they could access research and benefits, to the establishment of underground and legalized needle exchanges, to the vigilant defense of the civil and human rights of people living with HIV.

There are now few chapters—many tragically and literally died off as members lost their personal battles to AIDS, and others waned in the Clinton era—but the struggle continues: ACT UP Philadelphia has just won expanded access to condoms in city jails, and a new chapter in Austin Texas is going strong.

On March 29, ACT UP NY and its allies will commemorate this two-decade legacy with a march to Wall Street—but this time, the demand is for health care for all and single payer health insurance, as well as drug price controls.

Meanwhile, this week at the Conference on Retroviruses and Opportunistic Infections (CROI), health care policy was not a big part of the agenda, given that this long-standing scientific confab focuses on research ... but it looms large for anyone following the science on HIV prevention, and for the dozens of web-cast sessions at the conference that dealt with prevention technology, policies, and epidemiology.

As the powers-that-be put more chips in the "biomedical intervention" basket, we have to ask: where are the systems of care that are ready to bring prevention options everywhere they are needed, as soon as we can get them out of the research pipeline?

The dictionary tells me that biomedical means "relating to the activities and applications of science to clinical medicine." A report released by the Forum for Collaborative Research just before this week's conference tells me there are a spectrum of such activities being looked at for HIV prevention—including the use of anti-HIV drugs by those at risk of HIV (with a daily dose like the use of birth control pills) or those recently exposed, microbicides that could be or new approaches to "barrier" methods like the female condom or even diaphragms, and microbicides.

But the report urges the need for coordination of research, an end to the competitiveness between researchers that impairs collaboration, and an investment in "sustainable" research, by "building ownership in host communities by genuinely involving local researchers and establishing standards for trial participant protections and community engagement."

And biomed prevention sure has been big in the news lately, with large studies in South Africa, Kenya and Uganda showing that circumcision of adult men reduced risk of HIV by as much as 60%. That's vaccine-level efficacy, and next week the powers-that-be, like WHO, UNAIDS and PEPFAR (the US global AIDS program), will meet in Geneva with the goal of coordinating work on this striking finding, with many ethical, practical and cultural issues to consider.

And then there was the disappointing news that a microbicide trial was halted after one of its three sites had more cases of transmission in the treatment arm than the placebo arm. It is still unclear if it was the microbicide itself or something about the particular site, and the press conference by trial sponsors at CROI did not shed much light.

But these aren't the only biomedical trial result we can expect in the coming few years. The AIDS Vaccine Advocacy Coalition (AVAC) has made this handy chart showing that we can expect results from multiple biomed trials in the next two years—and are we ready.

Hey, it's not even just about upcoming results; it's about what we know right now ... HPV has been shown to increase susceptibility to HIV... Hello! Vaccine! Hello!

So ... if we're looking at prevention efforts that require health care system, like, say, making circumcision available as a safe and sterile practice, or treating the STDs that increase the risk of someone getting or passing on HIV, we are not ready if we don't have health care systems—and we don't have them if we don't have health care workers. Hundreds of groups worldwide have joined in the call for US government investment in the people who make care a reality, and they are asking you to call your senator with the request that they co-sponsor the Africa Health Capacity Investment Act.

The Forum's report recommends that we get ready to get going on male circumcision and other prevention interventions "through a coordinated operations research effort, improved marketing, behavioral research, use of AIDS treatment scale up as an opportunity to deliver prevention, and lower prices and adequate purchase capacity for prevention commodities."

Add that all up and what does it spell? Health care.

The next wave of desperately needed HIV prevention options will require not just better coordination of research but investing NOW in systems of care. Otherwise, we risk having scientific breakthroughs that have no real effect in stemming the epidemic.

Structures of Injustice: Notes from the HIV Epidemic

2007-02-28T08:00:00-05:00

Julie Davids is the Executive Director of CHAMP (Community HIV/AIDS Mobilization Project).

Imagine that you live in a country where HIV infection rates are on the rise. In your nation's capital, one out of every 20 people is HIV positive. In some socially marginalized communities, nearly half of people are HIV positive.

In this place, about half of all people who need to be taking HIV medication to stay healthy are unable to access medication on an ongoing basis, and some have died while on waiting lists for drugs. Hundreds of thousands of HIV positive people pass through prisons and jails each year, and no effort is made to coordinate education, prevention or social services for them.

If you are reading this post from the United States, you live in that country. The epidemic in Washington, DC rivals that of some African nations; people in South Carolina and West Virginia have died on waiting list for AIDS drugs; and Black gay and bisexual men, at the intersection of the gay and Black epidemics that comprise the majority of cases in our nation, have rates of HIV that average 46% across urban centers.

The epidemic in the United States is diverse and complex, but is most prevalent in African American communities, where rates of HIV are eight times higher than in whites, and in gay men of all races, who still make up over half of new infections. And Black gay and bisexual men—at the intersection of these hard-hit communities—have rates of infection that are among the highest in the world.

So what's up with this epidemic in the United States??

For 27 of his years living in this country, Dr. Harold Jaffe worked at the Centers for Disease Control and Prevention (CDC). Yesterday at the Conference on Retroviruses and Opportunistic Infections in Los Angeles, Dr. Jaffe—now ex-patting at the University of Oxford in the UK—reflected on the U.S. epidemic in a plenary session entitled "Status of the US HIV/AIDS Epidemic: Is it Changing and If Not, Why Not."

You can join thousands of researchers, clinicians and a smattering of community activists who heard it live by checking out the webcast, where you can also find other sessions offering a heady mix of supergeeky lab science, late-breaking medical news, and prevention research that is fueling some of the most exciting debates in HIV/AIDS policy in recent years—more on that in Friday's post!

Jaffe was in the thick of it at CDC when the epidemic was first noted in the United States, and has now joined the ranks of ex-CDC employees who, to a greater or lesser degree, now speak more freely about what they've seen and where they think we need to go.

In this case, Jaffe focused on data that show that abstinence-only education does not work, citing studies like one that showed that over 13,000 youth enrolled in these programs had "no significant risk reduction indicated by self-reported behavior or by biological outcomes." That means that the young people said they weren't abstinent, which was then backed up with irrefutable stuff like pregnancy, a "biological outcome."

Saying that "funding risk reduction programs makes a lot more sense than wishing risks away," Jaffe noted that Bush's proposed budget for 2007 calls for $204 million to support abstinence-only education at the same time that federal funding for needle exchange is zero. No administration, Democratic or Republican, he added, has put "any money whatsoever" into needle exchange programs.

But there are a few other places we need to go to look at the real roots of the epidemic in the United States. CHAMP has endorsed the National Minority AIDS Council (NMAC) report, African Americans, Health Disparities and HIV/AIDS: Recommendations for Confronting the Epidemic in Black America.

The report points to four key areas needed to cut to the roots of the Black epidemic in the U.S.: access to housing; incarceration issues; needle exchange; and marginalization of gay men and other men who have sex with men.

Jaffe used his time to speak out for needle exchange and against abstinence-only programs, and stressed the epidemic in the gay community. But he missed the opportunity to laud leaders like Phill Wilson, right here in Los Angeles, and the new National Black Gay Men's Advocacy Coalition—Black gay men fighting in the epicenter of the epidemic in this country. Instead, Jaffe made a call out for leadership that only cited white gay men leaders of 25 years ago, Nelson Mandela, and Magic Johnson.

But incarceration and housing loom large indeed in the lives of Black people at the core of this epidemic. What public health people refer to as "structural interventions," and what many of us would call plain old "social justice"—stuff like affordable housing and sentencing reform so that less people are locked up and their communities are not left in turmoil—are a key part of what it would mean to really attack the epidemic in Black communities.