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A Heart Wide Open

by Doug Wirth
Chief Executive Officer
Amida Care

For me, the opening session set the conference tone, blasted my heart wide open (again) and reminded me why I and so many others continue to do HIV work: “AIDS work calls for the best in humankind, our faith in people and Spirit is challenged when our most basic needs go unmet, as such we must STAND UP and turn the tide together, to use our personal power to change the course of this global epidemic and end AIDS once and for all, it’s within our grasp, let us be UNITED in our purpose, let it be so, let US MAKE IT SO!”  I’ve been looking forward to sharing time, space, ideas with people from around the globe who are making the waves in these tides of change!

I’d like to highlight three sessions from Monday/Tuesday that will impact New York’s Positive Charge project: 1) MSMs in US: Involve[MEN}t urged us to look clearly at the differences in associated sexual risk exposures between Black and White MSMs, and use the data they shared to allocate resources and support culturally competent programs most capable of reducing new infections within Black MSM communities.  We must move now, and quickly, to address the underlining/structural issues associated with HIV transmission among Black MSMs, which Dr. Ken Mayer from Boston outlined: poverty, housing instability, lack of jobs/unemployment and incarceration.  I am moved by the United State’s leadership in global HIV efforts but dissatisfied with our efforts at home to support life, liberty and happiness for my gay brothers of color.  And I’m reminded in this moment of a decade old conversation with Douglas Brooks, AU’s Board Chair, that men/women of color get tired of teaching white folks about their racism.  It’s my/our job to look inside to find the ugly and misinformed human parts within Caucasian cultures that limit love, compassion and appreciation which in turn contribute to HIV transmission among African Americans and Latinos, especially MSMs; 2) Harm Reduction: I sat in on a presentation that showed clearly, given limited resources, ensuring access to clean needles with minimal/didactic teaching on their use, is as effective (or better) than more interactive and lengthy behavioral change programs.  Access to clean needles, and other harm reduction approaches, must be expanded now.  The United States has an opportunity to show leadership in this area; and 3) Trans-competent HIV Work: Much must be done in this area, but JoAnn Keatley, from UCSF, perhaps said it best, when trying to make HIV programs trans-competent, “give us a job, we’re competent, capable and we need good pay that includes health care, affirms our dignity and offers us stability,” which is a great antidote to the high rates of employment, housing and education discrimination that Cecilia Chung outlined are components driving trans-migration.  After all, are most of us looking for a better life and some one to share it with?  What’s more universal than that?

Thank you AIDS United, and all the business, community and foundation partners who support AU – especially BMS who made it possible for 5 AccessNY partners to attend the IAC 2012!  We are inspired and changed by this experience.  Doug Wirth, President/CEO, Amida Care, NY, NY.

Give Love, Share Love: Impressions from IAC

By Sarah Chrestman, MPH, Evaluation Manager
Louisiana Public Health Institute
New Orleans, LA

I was so excited to attend the International AIDS Conference that I didn’t even think twice about leaving my six-month-old for a week.  With that being said, I did cry the entire way to the airport, but the opportunity to attend THE global event on AIDS was too good to pass up.  My excitement quickly gave way to feeling a little overwhelmed when I opened the 400+ page program to try and map out my approach for the next few days.  I realized that there is absolutely no way that I’ll be able to attend everything I’m interested in.  So I’m trying to balance gathering new information to use in Positive Charge (linkage and retention) with exploring new areas of interests.

My first full day with the conference was incredibly busy.  The big names that we had the privilege of seeing speak included Secretary of State Hilary Clinton, Dr. Anthony Fauci of NIH, Phill Wilson of Black AIDS Institute, Sheila Dinotshe Tlou of UNAIDS, and that was just the opening plenary session.  It set the tone for the day, an energetic call to carry on and continue marching towards an AIDS free generation.

It was Sir Elton John that had the greatest impact on my day.  While the world loves his music, I was thrilled to see him in this arena.  In a session centered on public-private partnerships, John called upon us to love.  In speaking about his own trials and tribulations, he told how love saved his life and the power it has to successfully combat one of the greatest problems the world has ever faced.  “Everyone deserves love.  Not enough receive it.  It is up to us to give it, share it.”  This is our call to action.  Love involves compassion, kindness, and support.  It involves counseling and testing and access to medical care and support services.  It involves greater access to life saving drugs.  He reminded us that we know how to overcome HIV and has challenged us all to put the plan into action.

Preliminary data from Louisiana Positive Charge has about 26% of clients reporting stigma as a barrier to receiving medical care.  Other barriers include transportation, fear, denial, and homelessness.  Louisiana has laws that criminalize those with HIV.  We have two cities in the top ten for AIDS case rates.  People are getting tested late once their disease has progressed.  How do we turn the tide of public views away from stigma and fear?  The answer is love.  We have a long road ahead of us, but projects like Positive Charge are not only linking people to HIV medical care and support services but also fighting to turn the tide across the country.  Louisiana Positive Charge are building a more robust statewide network to improve linkage to care using both community based organizations and the public hospital clinics.  It is very easy to get caught up in the day to day activities of our projects.  This is involves site visits, coordination calls, data collection trainings, deadlines, reports, IRB modifications, and grant proposals.  Every day we put out fires.  We move quickly, barely pausing to celebrate any success before moving onto the next issue – and there is always a next issue.  IAC is serving to rejuvenate our team.  We will return home with greater enthusiasm and a renewed sense of purpose, a wealth of knowledge including new skills, and most importantly love.

AIDS 2012: Two Days Down

Beth StringfieldBy Beth Stringfield, Project Coordinator, Positive Charge Initiative

We must have strong backs to support those who are tired… we can change the story of AIDS…courage, dignity…HIV and poverty are intertwined…achievable…unleash the power…communities lead the way. These are some of the words and images that have shaped the first two days of the International AIDS Conference for me.

As I have listened to speakers, watched films, read posters, and talked with fellow participants, there is a sense that we truly are at a turning point in the epidemic; there is excitement about the evidence that continues to build upon itself that treatment is prevention, that medications are again changing the trajectory of the HIV in the course of history.  But that is tempered by frustrations over conversations that recur year after year – overlooked populations, stagnant systems, and relying on medication as the solution to HIV without addressing the social factors that so heavily impact HIV transmission and access to care

Poverty, fragmented systems, racism, violence, and fear are among the many companions to HIV that we must find human solutions to. It’s a daunting task, and having not solved those problems over the course of human history, chances are slim that we’ll solve them in the next few years. But it doesn’t mean we can ignore them either.

Access to care work is not simply about finding medical care providers for our clients and scheduling their appointments. It’s about recognizing and acknowledging that social factors are as much at play in one’s ability to be healthy as medications and medical appointments are. We must work for safe housing for all, transportation systems that meet the needs of our rural folks, societies free of racism, communities in harmony, and families that embrace and value all members.

But knowing that this work will take time, access to care is about helping clients meet the daily needs of living that can then allow them to focus on HIV, and further it must also be about helping a client set goals, exploring personal motivations to stay sober, practicing communication, determining values, and planning for the future. Essentially it is helping clients to build the skills to excel in spite of the challenges that continue to surround them; to be better than HIV. That is what access to care is about.

Perhaps, if we are truly on the cusp of achieving treatment as prevention, we can now turn our attention to the other co-morbidities that no pill can help.

Beth Stringfield works on North Carolina Community AIDS Fund’s Positive Charge access to care program, funded by AIDS United and Bristol-Myer Squibb.

Facing the Issues of MSM and HIV

by Dr. Russell Brewer
Director of HIV, STDs, and Reproductive Health
Louisiana Public Health Institute
New Orleans, LA

The theme of the MSM Global Forum pre-conference held on July 21, 2012 was “From Stigma to Strength.” This theme could not be more fitting given that MSM from all corners of the world experience stigma, homophobia, criminalization, and discrimination in their everyday lives. These experiences affect their ability to access HIV prevention, care, and treatment services. The MSM Global Forum pre-conference began with an announcement by Congresswoman Barbara Lee (D-CA) that she has introduced a new bill called “Ending the HIV/AIDS Epidemic Act of 2012″ that lays out a policy and financial framework to creating an AIDS- free generation in the United States and worldwide. It’s great to see policy makers taking a leadership role in ending the HIV epidemic.

The introduction of the next speaker (the Hon. Michael Kirby with the Global Commission on HIV and the Law) by Robert Suttle, Assistant Director of the SERO project ( provided a face and story of an individual (Robert Suttle) who was convicted and incarcerated in Louisiana for HIV non-disclosure. I’ve read about HIV criminalization and how it perpetuates stigma but I’ve never actually heard a story from someone who was impacted by this law. The presentation that followed by the Hon. Michael Kirby really hit home for me in terms of the devastating impact of HIV among MSM not only in the United States but also globally and how laws that criminalize MSM will continue to fuel the epidemic. For example, Michael Kirby mentioned that 60% of new infections in the world are among MSM and fewer than 10% of MSM worldwide have access to treatment and preventive services. In addition, 41 of 54 countries that are part of the Commonwealth still criminalize MSM. We need leadership, education, and mobilization to help repeal these laws.

Later on during the day, Maurice Tomlinson, Legal Advisor with AIDS Free World gave the first Robert Carr Memorial Lecture to pay tribute to the life and legacy of the late LGBT activist Dr. Robert Carr.  Maurice describes himself as an accidental activist.  He actually wanted to be a patent lawyer but instead ended up being an advocate for all forms of marginalization that provide a safe harbor for HIV.  Maurice talked about his efforts to challenge the anti-buggery (male same sex intimacy) law in Jamaica.  In a recent survey, 82% of Jamaican people indicated that they were prejudiced against gay people. Maurice mentioned that in order for the law to be repealed, there needs to be ground swell support in the country and for the last few years, he and other activists have embarked on a plan to change the hearts and minds of Jamaicans through public education, walks and stands for tolerance, and other strategies. His presentation could not have stressed more the importance of challenging and repealing  human rights violations in order to end stigma and discrimination; and create safer and more tolerant environments that enhance access to HIV prevention, treatment, and care services.

Rebuilding and Healing

by Maya Wyche, Program Manager
Southern REACH

On May 24, 2012, Women With A Vision (WWAV), a member of our AIDS United and Southern REACH family, fell victim to arson. While the crime is still under investigation, the women who embody and those who look for comfort in and through WWAV, are doing their best to move on through the smoke.  The surrounding community, clients, and peer advocates, as well as national and international partners and supporters have answered their cry for help.  Assistance has varied from heartfelt $1.00 to thousands, such as $5,000 donation from AIDS United, and from the provision of temporary office space within a local church to the potential for donated property.  Although they have come a long way from where they were in the immediate aftermath of the fire, with the slow to start resumption of services, much healing has yet to manifest.

Women with a Vision after the fire logoAs a woman and fellow New Orleanian, it is disheartening to know that some individuals will go to such lengths to disrupt progress and further marginalize woman of color.  I wish I could say that injustices such as this were rare in the South and specifically New Orleans. However, the marginalized and disenfranchised populations, such as the women serves by WWAV who are facing challenges such as addiction, domestic violence, and most notably all ills resulting from poverty, are all too often victimized. This crime could be perceived as a catalyst for a bleak and hopeless situation – from my viewpoint it is an opportunity for change. Crisis calls attention to serious matters and this fire will be fuel for heightened advocacy, which holds the potential for far reaching, long standing systems changes. Let us continue to stand with WWAV and most importantly the women encouraged by and dependent upon their powerful advocacy and nurturing assistance.

Stay updated with the work of WWAV by clicking the links below:

My First Day” by Shaun King

For All that We Have Won, For the Future We Will Make” by Rebecca Gibson

Making Jewelry, Making Change

Story from local news outlet on the WWAV arson

OraQuick In-Home HIV Test: Another Tool in the Toolbox

On Tuesday July 3, 2012, OraSure Technologies, Inc. announced that the U.S. Food and Drug Administration (FDA) has approved the Company’s OraQuick In-Home HIV Test, which would be available for purchase online and at retail stores beginning in October.  AIDS United interviewed Ace Robinson of Gay Men’s Health Crisis (GMHC) and Joseph Interrante of Nashville CARES (Community AIDS Resources, Education and Services) about their opinions concerning FDA’s approval of the first and only rapid over-the-counter (OTC) HIV test.

AIDS United Policy Update: What are the benefits and challenges you foresee following the FDA’s approval of the OraQuick In-Home HIV Test?

Ace Robinson: The FDA’s approval of Over-the-Counter (OTC) HIV test kits is a step forward in the battle against HIV.  This additional instrument in the HIV Prevention tool chest will help reduce a barrier to testing for some individuals.  The CDC estimates about 20-25% of HIV-positive people in the United States are unaware of their status.  Additionally, qualitative studies have confirmed what we already assumed: that people who are aware of their HIV-positive status adapt their behavior to lower their risk of infecting other people upon learning their status.

Some people will avoid being tested for HIV for a variety of reasons:

  1. Being seen in the clinic
  2. Shame after detailing risk behavior
  3. Accessibility due to location and/or opening hours (especially for non-urban dwellers)

These hindrances, and other factors, will be reduced with OTC testing for the general population.  However, the overarching fear is that people who test positive for HIV will not have the supportive resources and environment currently required in most states at HIV testing centers.  These OTC tests also will include a help desk to immediately console and educate a newly diagnosed person as to the best follow-up to immediately improve the health outcomes, both for themselves and also their activity partners.  The fear of OTC home test kits, e.g. hormone pregnancy tests, leading to immediate rash and unhealthy behavior has been great historically dispelled over time.

Joseph Interrante: The in-home HIV Test increases available resources for testing and has the potential for helping to “normalize” and de-stigmatize the process of testing for individuals.  I suspect that a significant segment of those who use the in-home test will be people who, for a variety of reasons, do not and will not come in for face-to-face testing.  (We’ll have to see if carrying an HIV test kit up to the counter at your local pharmacy doesn’t pose as great a barrier, given the stigma that sometimes accompanies the very process of asking/going for a test.  As/if we get reports of people being treated poorly or prejudicially, advocates and educators will want to be prepared to intervene.)  So the in-home test increases access along with other initiatives like face-to-face testing through pharmacies in rural communities.

But this underscores the greatest challenge to in-home testing, which is ensuring linkage to care for those who test HIV-positive.  In a face-to-face HIV test (at least the way we do it at Nashville CARES), personal follow up and linkage occurs immediately at the time of the preliminary positive test result.  While a web site and a toll-free hotline to provide both education and referral information will be available in connection with the Orasure Test Kit, these strategies have in the past proven far less successful in helping people get into care than face-to-face support from an actual specialist, both during and after that traumatic moment when you discover you are HIV-infected—no matter how well prepared you may think you are for such a result.  Will the same fears and concerns that deter people from face-to-face testing also deter them from seeking the care that makes knowledge of HIV infection meaningful?   That is one of my main concerns, one with implications for both treatment and prevention.

We also need to ensure that information and education is available widely about HIV testing and what a single test result may and may not tell you about whether you are infected, much less whether you are at risk for HIV infection.  Many of the limitations to the in-home test are the same as those for HIV testing offered in any context, such as the so-called “window period” for antibody development.  There may be additional limitations to the in-home test due either to the technology or to user error.  (I am concerned by the reported 8% error rate in negative test results, if that in fact proves to be the case.)  Linkage to care could also be enhanced by having local resources for education and support distributed along with test kits at point of sale, though how we implement that without creating additional, excessive burdens on already strapped local organizations is unclear.

As with any technology, there is also the potential for misuse.  For example, private purchase of test kits makes possible the forced testing of women, minors or gay men in relationships of powerlessness without their consent in order to use HIV-positive status to perpetuate (or initiate) the exercise of power, control, and/or abuse.  Potential for misuse should not in itself be a reason not to have the technology available, of course, but we need to recognize that potential and be prepared to address it and even prevent it—probably through collaboration with groups whose primary mission is domestic violence and/or sexual abuse, and making sure that our own educators and service providers are educated about these benefits and challenges.

AUPU: What impact would the availability of the OraQuick In-Home HIV Test have on HIV prevention efforts?  Do you think physicians and other health care providers would recommend the use of OraQuick HIV Test in your region?

Ace Robinson: OTC HIV testing will help HIV prevention efforts on two fronts.  It will lead to greater accessibility to testing and also will reduce the burden of cost for HIV testing at clinics.  Insomuch, the scarce resources available for HIV prevention can be redirected to other HIV/STI preventative initiatives.

Yes, healthcare providers in NYC have historically led in the incorporation of HIV Prevention and Intervention measures that increase a person’s autonomy over their personal health.

Joseph Interrante: I don’t think that it will lead to any meaningful reduction in targeted testing and counseling or broad-based screening in clinical settings, to the extent that those activities are focused (like ours at Nashville CARES) on poor and marginalized populations.   Frankly, this test is not an affordable option for poor people.

There is a possibility, maybe even likelihood, that (repeated) personal testing could be used by some individuals at high risk as a substitute for other prevention measures like condom use.  (I’m reminded here of Walt Odets’ discussion of substance abuse among some purportedly HIV-negative gay men, as a pretext for rather than a cause of risky behavior.)  Prevention efforts will need to address this within the broader discussions about risk-taking and why/how it occurs.

Will health care providers here in Middle Tennessee recommend use of the in-home test?  Some may, hopefully within a conversation with their patients about HIV and risk reduction, though I fear that such contextual discussions will continue to be all too infrequent.  I certainly hope that providers will encourage use of face-to-face HIV testing, which is free and confidential through CARES and other agencies, as the preferred option for individuals.

AUPU: What do you think the next steps are in furthering HIV prevention and more generally, confronting the HIV/AIDS epidemic?

Ace Robinson: Accessible combination therapy for HIV Prevention must be enhanced especially for populations with the highest HIV incidence.  These methods must include behavioral modification and biomedical intervention.  Treating HIV-negative and HIV-positive persons must not be segregated between those two arms of Prevention.  The first and foremost challenge to confronting HIV/AIDS is education.  People must know the basics to HIV infection, increased susceptibility and available care and how to quickly access care, if necessary.  While AIDS ravaged many urban cities, it was brought under control due to massive education and treatment advances.  Unfortunately, that is no longer the case at the same level. Many youth do not learn how to best protect themselves and/or loved ones from infection.

Joseph Interrante: We need to continue to build on our recent successes in reducing the number of HIV-infected individuals who do not know they are positive and linking to care those who are positive as well as sustaining their involvement in care.   There are still far too many individuals who are diagnosed concurrently with HIV and AIDS or develop AIDS within a year of testing HIV-positive.  Use of strategies like social network assessment to guide our targeting of testing resources can help us ensure that we are focusing on those (sub)groups within disproportionately impacted populations where the disease burden truly is heaviest.

Treatment is prevention—we know that.  The individual and public health benefits are clear.  But let us not focus so narrowly on “treatment adherence” or preventing subsequent HIV transmission that we ignore other health concerns much less other social and material needs that people with HIV/AIDS have.  If we really want to build and support self-management skills, a holistic approach is vital.

Important as they are, these efforts should not be accompanied by a reduction, much less abandonment, of prevention work with HIV-negative individuals at high risk.  There’s enough research that has identified significant co-factors for risk that enable us to move beyond mere prevalence or incidence by race, ethnicity, gender, or sexual orientation to target these activities for greatest impact.  I realize that in a flat or reduced funding environment, there is tremendous pressure to shift scarce resources to HIV-infected individuals where “results” or at least surrogate markers are more easily measured.  But I think we lose much in the larger battle to end AIDS by doing so.  We put ourselves in a bit of a conundrum wherein we fight (and rightly so) against stigma, and its most pernicious manifestation in HIV criminal exposure laws, on the one hand, while in practice we end up doing something that comes dangerously close to the same thing by focusing on those with HIV infection as our sole approach to preventing transmission.

As someone living with HIV, I am firmly committed personally and professionally to fighting HIV-related stigma in all its manifestations.  But I wonder if we set ourselves an impossible (and somewhat naïve) goal by aiming to eliminate stigma, which is how I hear the goal articulated to an increasing degree.  Maybe it’s my Catholic upbringing, but I often think that trying to eliminate stigma is like playing “whack-a-mole” (or trying to argue with an AIDS denialist if you prefer a more relevant analogy).  We’ll be far more successful working to make sure that stigma presents no barrier to prevention, testing or care for those who need them.

Finally, prevention depends on effective and responsible public policy.  That means advocating for comprehensive and inclusive sex education (especially for young people).  It also means advocating for comprehensive strategies to address injection and other forms of substance abuse, including syringe exchange and other harm reduction as well as more traditional abstinence-based strategies.  I’ve already mentioned HIV criminal exposure laws and the need to advocate for repeal or at least for an end to their application. These are truly policy challenges in much of the south, but policies and practices to which we at CARES and many of our sister organizations are fully committed.

Ace Robinson is the Managing Director of Community Health & Research, Public Policy, and Advocacy at Gay Men’s Health Crisis (GMHC). Ace is a specialist in HIV prevention with a diverse array of experience taken from his work in Senegal, South Africa, Chicago, Los Angeles, Haiti, and New York City. He worked on HIV vaccine design and harm-reduction programs in Africa; led strategic structural-change initiatives on HIV with faith-based leaders, CBOs, and elected officials in Chicago; and directed infectious disease programs in Haiti. Ace also served as the AIDS Prevention Unit Director at the David Geffen School of Medicine at UCLA and recently has been working as an advisor to the International AIDS Society and Black AIDS Institute.

Joseph Interrante is Chief Executive Officer (CEO) of Nashville CARES (Community AIDS Resources, Education and Services), the oldest and largest AIDS services organization in Tennessee.  On an annual basis, Nashville CARES provides HIV prevention education, testing and linkage to care, and social services support to 60,000 Middle Tennessee adults and youth.  He joined the staff of CARES in May of 1994.

Interrante received his B.A. from Brown University in 1974 and his Ph.D. from Harvard University in 1983, and has taught at Harvard University and Oberlin College.  In the mid 1980s he moved from academics to nonprofit work with the AIDS Action Committee of Boston MA and later the AIDS Taskforce of Cleveland OH.  In the early 1990s, he was a member of the Education Advisory Committee for the American Foundation for AIDS Research (AmFAR) and the Citizen’s Committee on HIV/AIDS for Greater Cleveland.  More recently, he has served on the boards of the Center for Nonprofit Management and the AIDS Action Council of Washington DC and as a community advisor to the National Quality Center for HIV/AIDS.  Currently Interrante is a member of the Public Policy Committee of AIDS United, the Board of the Southern AIDS Coalition and the Greater Nashville Ryan White HIV/AIDS Planning Council. In 2005, Interrante was recognized as Nonprofit CEO of the Year by the Middle Tennessee Association of Nonprofit Executives and in 2006 as Public Citizen of the Year by the Tennessee Chapter of the National Association of Social Workers.  He is a 2005 graduate of Leadership Nashville. Interrante has been an AIDS caregiver and has been living with HIV infection for more than 27 years.

To read the FDA’s consumer update about the approval of OraQuick, click here.

To read AIDS United’s written testimony to the FDA in support of the approval of OraQuick, click here.