IN THIS ISSUE

• After Rome - how are we doing?
• Harm reduction where it's needed most: An interview with CitiWide's Robert Cordero
• Young gay Black men - yes, the house is on fire
• This is my story: Bayard Rustin Project peer outreach worker Venton Jones
• The ADAP Watch
• Research & treatment news

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No doubt about it, the IAS conference in Rome was as exciting as they come. A standing ovation for the results of the HPTN 052 trial, showing that effective treatment with HAART drugs prevents transmission of HIV. Increasing signs that a vaccine and a functional cure just might be in reach, if we can keep the research funded. A healthier pipeline of new antiviral drugs than we've seen in years.

But there was also frustrated resignation about the global economic downturn's effect on governmental and private funding for HIV treatment and prevention programs around the world - just when we know we have the tools to make new HIV infections almost a thing of the past.

How are we doing here in the U.S.?

We have a success story to report in this issue. CitiWide Harm Reduction's Robert Cordero joins us to talk about serving active injection drug users in Harlem and the South Bronx, dealing with complex and intimately connected problems like poverty, social marginalization, drug addiction, and HIV-HCV-TB co-infection. If you can make prevention work in the South Bronx, you can make it work anywhere.

We also have what is definitely not a success story: new HIV infections among young gay Black men are increasing - rapidly - while the rate of new infections for all Americans has held steady, between 55 and 60 thousand a year, for several years now.

And with state and federal governments pleading poverty, we have more than nine thousand Americans on ADAP waiting lists, even though we know it costs the public sector a lot less to treat HIV infections than it does not to treat them. The ADAP "savings" are insignificant in the contexts of multi-billion dollar state budgets and the $3.5 trillion federal budget, and they will return to haunt us in years to come in the forms of higher public sector HIV costs and more human suffering.

HIV is not just a medical problem. It's a social and political problem, too - as the CDC now acknowledges - and getting the epidemic under control will take social and political will. Memorize your Representative's and Senators' Washington, D.C. phone numbers. With the "super committee" of twelve preparing to tackle the deficit, they need to hear from us.

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A year ago, we ran a Positive Voice issue on HIV as a disease of poverty. CitiWide Harm Reduction, who pioneered needle exchanges in the South Bronx, one of the poorest communities in the country, gave us useful but sobering backgound information and arranged for one of their program participants to give us a This Is My Story narrative of what it was like, poor and HIV-positive, trying to get basic healthcare, until he found CitiWide. We talked to him again this past week, and one message comes through this interview: how many problems poor people with HIV have to deal with, how interconnected they are, and how much harm reduction agencies like CitiWide have to respect the very challenged populations they work with.

Positive Voice: Thanks for joining us again Robert. It's been a while since we talked with you, so why don't we start by reminding our readers what CitiWide Harm Reduction does?

Robert Cordero: Sure, always happy to do that. Since 1995, CitiWide has been working to reduce harm for injection drugs users and working to improve their lives in the South Bronx and Harlem areas of New York City. We do that through a comprehensive, on-site syringe exchange program, which is also run as a drop in center. Since the last time we spoke, we've actually expanded from five days a week to seven days a week, since July 31, thanks to generous support from the M*A*C AIDS Fund, because of the needs mainly of homeless active drugs users who are unsafely housed, and it's been really successful for us. We've also had some other milestones. We just recently released our 2011 Annual Report, which we encourage people to take a look at, to see what we've been up to and some of our accomplishments and challenges.

Also, earlier this year, in the beginning of 2011, we released our three-year strategic plan, which is focues on three major strategic areas. One was to continue to build the CitiWide harm reduction model of prevention and treatment and care among active drug users. The second piece was about building leadership among active drug users, among people with AIDS, among homeless people, and within our community, to strengthen what we do with partnerships and support from others in the community. And thirdly, we focused on something that we're all interested in, sustainability, building on our successes from the last few years, and ensuring that our model of care is sustainable into the future, particularly given the challenges and the economic environment and the political climate with a lot of the work that we do. So those are some of the highlights that we're really excited about.

Right now, as we speak, this month, we're going to break ground - our strategic partners HELP/Project Samaritan are going to build a co-located health center on site at CitiWide, making us the only syringe exchange program in New York State, possibly in the country, that provides Federally Qualified Health Center look-alike primary care and psychiatric care specifically tailored to meet the needs of drug users. That clinic will start being built this summer and should be done by December of this year, and we're really, really excited about that.

PV: So much has happened in the last year scientifically on the prevention front - for example, the HPTN 052 trial, iPrex, CAPRISA - and a few weeks ago in Rome, Anthony Fauci stood up and told the conference that scientifically we have the tools now to end the epidemic. Does the demonstrated effectiveness of the prevention tools increase your sense of urgency about reaching your target population?

RC: Yes, I agree, there are a number of things out there that give us a greater sense of urgency. First of all, we know we have the tool to end the HIV epidemic and Hepatitis C transmission among injection drug users, and that tool, first and foremost, is the most effective HIV and HCV intervention every known to mankind: syringe exchange, particularly for people who inject drugs. And related to that, we've been strategically positioning the agency to be responsive to the needs of the community and also to the scientific and policy environment we're living in. So we're big supporters of treatment-as-prevention. One of the reasons we're building co-located primary care and psychiatric care on site is that, on one end of the spectrum, we're able to prevent HIV and Hepatitis C transmission through our syringe exchange program, and at the other end of the spectrum, take care of folks who are already positive in a meaningful and substantive way, as soon as they're diagnosed or even before. Through treatment-as-prevention, we have a real opportunity to lower community viral load among the populations we serve, and really have an opportunity to end these two epidemics that are ravaging our community.

Also, with the release of the National HIV/AIDS Strategy, we've been really involved with insuring that we are delivering at the local level, and our strategic plan is actually aligned with the goals and objectives of the National HIV/AIDS Strategy. So, for example, we have significantly ramped up rapid HIV testing, using a social networking strategy model, and with direct funding from CDC and the [New York] city health department to get everyone in our service area tested for HIV and Hepatitis C, because they impact our community so much.

We're also paying very close attention to healthcare reform, with the Affordable Care Act becoming fully implemented in 2014, we know there are big threats and big opportunities. The threat for us would that we're not positioned, we're not ready as an agency, as a non-profit organization with the mission of serving active drug users - we don't want to become an agency that's not on the forefront of prevention and treatment efforts and also is not positioned to live in that environment. So, for example, we know that a lot of the categorical funding we rely on to respond to the epidemic is in jeopardy - including Ryan White funding, HIV prevention funding - and there may be a day when there is not categorical funding serving the needs of people with AIDS and preventing HIV. So we've been looking at how to stay sustainable in that kind of environment, and for us a lot of that is moving into programs we normally don't do, like partnering up with a healthcare and psychiatric provider while we work at things we're good at - outreach, syringe exchange services, and connecting people to care.

PV: Continuing that conversation, obviously the federal and state funding environment is challenging these days, to say the least. Something we've wondered about, when Dr. David Holtgrave presents his elegant transmission and most cost-effective prevention models, which show how we could use the new prevention tools to bend the growth curve of the epidemic downward, is that one of the variables not included in the models is the state of the economy. We're curious: for your service population, injection drugs users, do you see more using when the economy is bad?

RC: That's a great question. For us, more than for a lot of other HIV-related programs and agencies, we see people who are severely, severely poor. In poverty. For example, seventy-five percent of CitiWide's program participants are either homeless or unstably housed, and a lot of that is related to their drug use, their mental health, the cycle of poverty and the synergy of all of these health conditions that impact them - HIV, Hepatitis C, diabetes, obesity.... So for us, what we have seen is not a dramatic increase in the numbers of people we're serving. What we've seen is increased severity of poverty and related chronic conditions. So people struggling to get onto benefits [in the slow economy], for example, that's really impacting their day to day survival. What we've seen in the last year or two, as the economy has worsened, we see cutbacks across the country in social services - for example, homeless shelters are becoming housing placement for people with special needs, you're seeing more restrictions on Medicaid eligibility, and all the tools we can utilize to get people to economic self-sufficiency are getting pared back because of the tightening of funding at all levels of government, city, state, and federal. At the same time, as private foundations are overcommitted and have not been able to offset those resources, and the private fundraising environment is very difficult. So our ability to respond to the increase in severe needs among the people we serve is very, very challenging.

PV: There's something else we've been curious about. One of the populations in which we see the number of new HIV infections still steadily rising is young gay Black men. Because of the relationship of poverty and color, we would expect the population you serve to be disproportionately of color - but do you also see a disproportionate number of young gay men? Is the breaking down of self-esteem that comes from stigma driving injection drug use?

RC: We're really keyed in, in our mission, on active drug users, so a few things on this note. Ninety-nine percent of the people we serve are people of color, predominantly Latino and Black. We have seen in our outreach on the streets with sex workers and our outreach in single-residence occupancy hotels where people with HIV are often placed for transitional temporary housing, a disproportionate number of young transgender people of color, who are completely marginalized and stigmatized and completely disconnected from any system of care - and completely isolated, without a social network. And I'm not talking about healthcare networks, I'm talking about friends and people who can support them in crisis. And of course in New York we see a lot of runaways. So when you're socially isolated, you're poor, you have HIV or have recently converted, and your ability to survive is based on transactional sex, for shelter, sex for drugs, or vice versa, then you really have a recipe for disaster.

What we have seen at CitiWide, because the average age of our participants is in the mid-forties, it's rarer to see young gay men. But we do, and we have programs to support them. We've teamed up with Bronx Pride Community Center and are really working closely with them coordinating, because there is an intersection between HIV transmission for young MSMs and drug use. It's not focused in on very much, because most of the time it's not injection drug use, it's party drugs. One of the most disturbing things that we've seen, that we've had difficulty coordinating or responding to - it's not unique to the Bronx, but we see it in the Bronx - we're seeing older white men who are moving up to the Bronx, much cheaper rents, much bigger apartments, and because the bathhouses in New York have been essentially shut down or driven underground, so these older white gay men moving up to the Bronx are doing sex parties, and they'll have syringes loaded with crystal meth, and everyone who's invited are young, black or Latino gay men, who may or may not identify as gay. There's a lot of money and drugs and sex, obviously, being transacted, and what's disturbing is, when we offer condoms in our outreach to the individuals setting up those parties, they refuse and say, if you ask again about condoms - because they're doing barebacking parties - we're going to stop getting sterile syringes from you. You're caught in this really treacherous territory when it comes to HIV prevention, and how do you really address that in a way that protects folks but also is respectful of what they want and need?

I don't know if you're going to use that, because it's potentially explosive, but I wanted to talk about it. We have to find a way to navigate these challenges if we are going to really address the epidemic.

PV: No, we think we'll use it... it's grim but interesting. And dilemmas like that bring us to what would be our last question, unless there are other things that you want to talk about. At IAS 2010 in Vienna, we had a declaration calling for across-the-board decriminalization of drug use, and we had follow-up statements calling for abandonment of drug use law enforcement this past month at IAS in Rome. Do you think this would be a good thing or a bad thing? How would decriminalization impact the population you serve?

RC: Well, first of all, CitiWide Harm Reduction signed on and endorsed the Vienna Declaration, as did many thousands of organizations in the U.S. and around the world. Back in April we put together a forum called Reducing harm and Improving Health in the South Bronx, that brought together what the Drug Policy Alliance and many folks we do harm reduction work with refer to as the "four pillars" of drug policy - treatment, prevention, harm reduction, and law enforcement - and we brought together key stakeholders, including NYPD and the Health Department at City and State level, community activists, and most importantly, drug users themselves, to help us create and mobilize around a public health and public safety approach and drug that's consistent with the Vienna Declaration. Se we're very supportive of it, and we've been working and mobilizing at the community level in our community in the South Bronx around this. We believe that South Bronx is one of the places in the U.S. where, if you can deal effectively with issues of public safety and public health, we can make an impact at the city level, the state level, and potentially the federal level. We think decriminalizing drugs is a really, really smart way to improve public health, improve public safety, and direct very scarce resources to things that are much more important to society, like healthcare, housing, and education - and stop spending so much money on arresting young people of color and warehousing them in prisons and wasting generations and generations of potential brain power.

PV: Robert, thank you so much for a really good interview. Is there anything else you want to talk about?

RC: The only thing I would add is, on the sustainability piece, which I struggle with daily as an executive director - I would say to everyone who works or volunteers in harm reduction: if we are going to survive and fulfil our mission to serve the needs of drug users, then we must continue to adapt, we must partner strategically, and not be afraid of doing that, because we're good at what we do. We're extremely good at street outreach, at reaching people. We pioneered participant-led and peer-led interventions, where drug users are actively involved in shaping programs, and I think we are very well positioned, with targeted resources and leadership, to potentially eliminate the AIDS and Hepatitis C epidemics. And if we stay stuck on just the syringe exchange component of it, that's fine, but it's never going to fully address the needs of drug users, who are impacted by so many of these social conditions. And I'm not saying we need to grow, actually, I'm saying we need to be very strategic about partnerships and getting into other areas that can help make us sustainable - for example, building housing for active drug users, because we know housing prevents AIDS, it prevents HIV, and it's a form of treatment. Getting people housed is a huge issue for drug users and people with AIDS in general. So housing is something we need to look at - can we partner, can we build it ourselves, to help people transform their lives. Because, in the end, that's what we should be about: helping people transform their own lives.

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Wednesday August 3, just after the previous issue of Positive Voice, a CDC report announced, New multi-year data show annual HIV infections in U.S. relatively stable.

Good! Not good enough, we wish the number of new infections would come down. But at least it isn't increasing anymore.

The sub-headline was a shocker, though: Alarming increase among young, black gay and bisexual men requires urgent action. Between 2006 and 2009, the number of new infections in this group increased by nearly fifty percent, and too many don't know they are infected or can't get treatment. Higher community viral load means more new infections, which means yet higher community viral load, so we may be seeing the beginning of a population-specific epidemic breakout unlike anything we've seen since the mid-eighties. Click HERE to watch the Black AIDS Institute's Phill Wilson tell Anderson Cooper, "Our house is on fire."

Not suprisingly, the CDC's report started a brisk discussion of causes and possible responses. Click HERE to read Frank Oldham's contribution to a New York Times forum, in which Frank points to Black Americans' unequal access to healthcare, and the effects of stigma and homophobia, as causes. One thing is very clear: the rising number of new infections is not being driven by different, riskier sexual behavior. Recent studies show that Black and Latino MSM are slightly more likely, not less, to use condoms than their white peers.

What do we need to do? The answers are obvious, but not easy.

We can't go on with a healthcare system that doesn't serve people of color as well as it does others. We have to commit to decent healthcare for all Americans, if only to control public sector healthcare costs - but it won't be easy to sell that to Congressional deficit hawks on the lookout for discretionary program funding scalps.

We need to put an end to stigma and homophobia. That means talking frankly about gay sexuality and gay lives in communities of color that aren't comfortable with it. But the alternative is young gay Black men not coming forward for testing, for fear of being stigmatized as gay, and African-American physicians not offering testing as an expected feature of routine medical care. A recent study shows poorer virological outcomes and retention in care for adolescents and young adults (AYA) than for older people with HIV, and poorer for Black than non-Black AYA - the natural result of lack of access to care and stigma as a barrier to accessing even what's available. NAPWA and Howard University are teaming up for a second annual International Conference on Stigma, Washington, D.C., on World AIDS Day, December 1, for care providers and activists. You can register at www.napwa.org.

And we need to reach many, many more young gay Black men with information about the extra risk their community already has to live with, how to reduce personal risk behaviors, and the benefits of routine testing and early treatment for those who test positive. We may have to shoot for 90% condom use in this population - and the only people who can say that effectively to young gay Black men are their peers. NAPWA's Bayard Rustin Project trains openly gay, openly positive young Black men to do outreach work in their own social networks. This should be happening in every city in the country.

As Frank wrote, August 5, "Wednesday's CDC report is a call to action. We lost a generation of young men in the first fifteen years of this epidemic. I was there. I saw it. We can't let it happen again."

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2007: I am an adult, a year out of college, trying to find myself and get my career started in the city of Dallas, Texas. I usually tested every 3-6 months. In April 2007, I was at work and started to become ill. I ignored it and kept trying to finish my work. I soon began to realize "something was different." My temperature began to climb, 99, 100, and 101, 102 and even higher once I came home.

I went to the hospital several times the next few days, only to be sent back home with some fluids, Motrin to reduce my climbing fever and pain medication to relieve the pains all over my body. Early the next morning, I woke up in a pool of sweat and gathered the strength to visit the ER once more. Again, I knew that "something was different." I was admitted to hospital or three days. During this time, I asked for an HIV test and it came back negative. I was thrilled.

After I was discharged and given a clean bill of health, it was like a breakthrough. I promised myself I would stop doing a lot of the wild and crazy things I once did. I wanted a change in my life and decided to follow my dream of enlisting in the United States Army and becoming a medic. Little did I know I was going through an acute HIV infection and tests were unable to detect the HIV growing in my body until my enlistment physical. I received a letter from the Army shortly after my physical to come back in to address a "private medical matter." Somehow, I already knew. "Something was different," I was HIV positive.

June 7th 2007 was the day it was all confirmed. I was shocked and now ineligible to enlist. Thinking "How could this happen to me!? I am educated; I have a degree in Health; I should have known better." This day changed my life. A lot of feeling ran through my mind: What happens when I tell my friends and family? Will anyone want me with HIV? What now?

All I knew at this point was that I had to do something. From this point I worked to develop a stronger passion to work to educate people about HIV, help others who are HIV positive, and learn self-value in the process. I started medication the follow year and soon became undetectable and in the best physical and mental health I have been in my entire life. I became strong enough to tell my own story and live to fight another day. Life continues.

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We like to keep an eye on smaller-market news, and this article in the Santa Fe New Mexican caught our attention: Experts say testing, treatment key to reducing HIV diagnoses. Their reporter Julie Ann Grimm explained with admirable clarity that at least twenty percent of Americans who have HIV don't know it, that most Americans who do know they have HIV change behaviors to reduce their chance of passing the virus on to others, and that people being treated effectively with "cocktail" drugs are less able to pass it on, whether they change behaviors or not. Universal testing and universal treatment are our way out of this mess.

Ms. Grimm wrote the next day, AIDS diagnoses rising in New Mexico and U.S. as some forget epidemic. At a time when too many Americans aren't getting the drugs that would keep them healthy and prevent new infections, too many other Americans think the epidemic is over, or it's turned into a low-grade irritant we'll have to live with because we can't get rid of it.

We can get rid of it. But the politics are going to be tough, and toughest of all for ADAP, just to protect current funding, let alone get it increased to meet the real need. Deficit hawks will say, "We've given you billions. Aren't you people ever satisfied?" and, "We all have to share the pain." And we will have to make the case, relentlessly, that underfunding HIV programs is irrational thrift that will increase public sector health costs for years to come.

Here are the latest waiting list numbers from our friends at NASTAD:

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We can't say yet that we're close to a cure. But we're getting closer.

Last issue, we reported animal trial results for VIRxSYS's VRX1273 therapeutic vaccine, which aims to deal with the problem of "resting" HIV that HAART drugs can't reach by training the immune system to recognize and destroy infected cells as the virus reactivates. Some of the monkeys died of the simian version of HIV, but two were virus-free, without drugs, months after their shots.

This past week, a researcher at University of Southern California reported promising in vitro results for a lentivirus specifically engineered to attach itself to HIV-infected cells - and only infected cells - making them vulnerable to drugs designed to destroy them. And NIAID announced it was increasing the number of participants in its HVTN 505 vaccine trial, to see whether the vaccine might not simply reduce the severity of new infections acquired after inoculation but even prevent new infections.

Researchers at Massachusetts Institute of Technology's Lincoln Laboratory announced development of DRACOs - double-stranded RNA activated capsase oligomerizers - that detect any cells containing dual-stranded viral RNA and induce cell death. The particular kind of virus doesn't seem to matter; the DRACOs are effective in the petri dish and mice against everything from HIV to dengue fever and H1N1 flu. The research is in very early stages, and we'll be watching to see whether DRACOs can detect HIV in its "resting" state and eliminate viral reservoirs from the body once and for all.

A team led by the Vaccine Research Team at NIAID have published new research on how HIV-neutralizing antibodies evolve - a possible step towards a therapeutic or preventive vaccine.

OraSure Technologies, faithful and generous supporters of AIDSWatch and National HIV Testing Day, announced they were closing enrollment in the final clinical study of a rapid over-the-counter HIV test. Granted, it's a test, not a treatment, but this is a sign of how far treatment has come since the early days when the nurse would tell us we were infected and then say, quietly, "Your life will be shorter." Before the "cocktail" arrived in the mid-nineties, there was no question of testing without counseling, because a positive test result was the next thing to a death sentence. Now we're in the final trial for an over-the-counter rapid test kit! An over-the-counter, no-counseling test is possible today because HIV has become survivable - provided we have access to good medical care and HAART drugs.

Last week the FDA approved Gilead's new once-a-day pill Complera, which combines Gilead's Truvada with Johnson & Johnson's recently approved new antiviral, Edurant. Our friends at TheBody Professional recently interviewed Harvard Medical School's Dr. Calvin Cohen, the lead investigator for the trials leading to approval, to ask him why Edurant is important. It's an interesting read. One of Cal's main points is that different patients' profiles of drug resistances and side effect vulnerabilities are so different that we need as many antivirals as possible in every class, so doctors who know how to use them can tailor drug combinations to the individual. The new combo pill isn't a cure, but it will help some of us still be here when the cure comes.

And - only in America! - researchers at California's Scripps Institute are testing a vaccine against heroin, designed to prevent addiction by destroying the drug before it can cross the blood-brain barrier and cause the addictive "rush." How is this relevant to HIV? As Robert Cordero tells us, injection drug use drives HIV and HCV infections in the South Bronx and around the world. Less addiction = less transmission, so this qualifies as a slightly exotic form of treatment-as-prevention. And this could change the lives of people who are already addicted and struggling to get clean and stay clean. It's hard to imagine, though, being a counselor and telling a client, "One jab, and you'll never again feel that rush you crave more than life or love." And it's hard to imagine being the client, steeling himself to say, Yes.

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The National Association of People with AIDS (NAPWA) believes in self-determination. We are passionate about making life better and more meaningful for all people living with HIV/AIDS. While the epidemic impacts us directly, we also impact the epidemic by identifying ways to reduce its new infections, mitigate its stigma and alleviate its suffering.

Working together, HIV Positive people and our allies turn obstacles into strengths, barriers into opportunities and prejudice into respect.

Join us in the fight. Join NAPWA now!

Frank J. Oldham, Jr.
President and CEO

© National Association of People With AIDS, 2011.