Addressing HIV/AIDS Stigma Head-On

December 5, 2011 in World AIDS Day

by Caressa Cameron, Regional Organizer, AIDS United

This World AIDS Day I had the pleasure of serving as the moderator for a distinguished panel at the International conference on Stigma at Howard University.  In this session we dug into the ugly details of what HIV related stigma looks like, how it’s formed and the steps we must take to eradicate it.

Vanessa Johnson of the National Association of People with AIDS and Kali Lindsey of the National Minority AIDS Coalition candidly shared their personal stories of HIV related stigma.  Dr. Gregory Pappas, Senior Deputy Director of the District of Columbia Department of Health  and Dr. Anne Stangl, a Behavioral Scientist and Stigma Specialist at the International Center for Research on Women, shared firsthand experiences of  the devastating ways that stigma creates barriers to accessing care, in the U.S. and around the world. People from as far away as Uganda joined the conversation with questions and comments through tweeting #EndAIDS

One of the most meaningful quotes of the day came from Mr. Lindsey when he said, “All of us in this world regardless of our status have to die once… but HIV related stigma is an entirely different and  all together separate death and nobody deserves to die twice.”  Thirty years after the identification of HIV, stigma is alive and well. It is both responsible for and reinforced by criminalizing people living with and at risk of HIV, religion based hate messaging, exclusionary political rhetoric, work place and housing discrimination and isolationism. The Deputy Executive Director of UNAIDS, Dr. Paul De Lay said it best when he stated that  the game changer to enable us to achieve zero incidence and universal access to care is reducing stigma and discrimination. If we are going to get to get to zero new infections, zero AIDS related deaths, and zero discrimination, we must have zero tolerance on HIV-related stigma.

We have come too far in the fight against HIV/AIDS. We know what is necessary to prevent new infections and how to support the lives and health of people infected with HIV.  We cannot let stigma stop our progress. We cannot ignore it. Our silence only makes stigma stronger.    We must address it head on. Take a stance on stigma by:

1.)    Identifying where it exists.

2.) Engage people in uncomfortable conversations that confront their biases and why they exists.

3.) Advocating on a national level with members of congress; to change policies perpetuating stigma.

What will you do to stop stigma? Join the global conversation #EndAIDS

Caressa Cameron joined the AIDS United staff as Regional Organizer in October, 2011.  As Miss America 2010, HIV/AIDS education was her platform, and she has been an dedicated AIDS educator and advocate since she was a young girl.

…”We Have the Technology…”

December 1, 2011 in President's Message

“We can re-build him.  We have the technology.”  Remember that classic opening line for the show “The Six Million Dollar Man” from the 1970′s?”  Well a version of that line is what has been going through my head as we observe this year’s World AIDS Day.

“We can end AIDS.  We have the technology.”

In other words, we are coming out of 2011 with a pretty clear prescription of what we need to do to end the HIV/AIDS epidemic in the United States and around the world.  Thomas Frieden of the Centers for Disease Control and Prevention says that AIDS is a winnable battle.  Anthony Fauci of the National Institutes of Health said major investments now can end this epidemic.  Secretary of State Hillary Clinton has proclaimed that creating an AIDS-free generation in our lifetime is actually within the realm of the possible.

So, while it looks like we have been shown the right path, are we going to take it?

On this World AIDS Day, it is important to remember that the United States is a part of the Global community that is fighting the HIV/AIDS epidemic, and remains tremendously impacted by it.  Nearly 1.2 people are infected with HIV in the United States.  More than 640,000 of those who know their HIV status aren’t receiving the consistent care they need.  There are an estimated 56,300 new HIV infections each year.  Some U.S. cities report HIV prevalence rates of over 2%, a rate that surpasses many developing nations across the world. HIV/AIDS has hit many of our nation’s vulnerable communities the hardest, including communities of color (particularly African-Americans and Latinos), gay men, women, and people in living in the U.S. South.

So what can we do to continue calling attention to HIV in America?  As we announced yesterday,  AIDS United is now part of the Coalition for National HIV Awareness Month.  The goal of National HIV Awareness Month (NHAM), the first of which will be in July, 2012,  is to engage civil society and the private sector in the United States to create broad-scale public awareness of HIV/AIDS, end HIV stigma and discrimination and engage new stakeholders in the fight against the disease, with the ultimate goal of ending the epidemic.  Find out more about National Awareness Month at www.nationalhivawarenessmonth.org

The release of the National HIV/AIDS Strategy (NHAS) by the White House Office of National HIV/AIDS Policy in July, 2010, has been a pivotal step towards redoubling our efforts to end this epidemic here on our own soil, providing us with a clear and ambitious “blueprint” for ending the domestic epidemic.   The NHAS seeks to reduce new HIV infections, increase access to HIV care, and reduce HIV-related health disparities.

But with NHAS comes tremendous responsibility.  We must take a good hard look at what we have been doing…finding out what works and changing what doesn’t.  And then directing our strategic investments into what is working.

And what do we know works?

We know that condoms work in preventing transmission.  So do syringe exchanges programs that provide clean needles to drug users who might otherwise transmit HIV by sharing needles.  We know that targeted behavioral interventions work for affected populations, giving them the tools to make better health decisions for themselves and those they care about.

We know that getting HIV infected people access to treatment saves lives and dramatically inhibits transmission.  We know that developing networks of care, where people can get wraparound services to address immediate and ongoing needs for shelter, food, addiction and mental health, will only increase their stability and improve their adherence to HIV treatment.

We know that important scientific and medical advances, like microbicides continue to be made in preventing HIV transmission and that improvement in the delivery and efficacy of treatment is also advancing.

So we know what works and there are many paths to success.  But now we must invest, invest, invest.

One more time. We must invest! Our passion.  Our talent.  Our time.

And yes, our money.  Public sector, private sector and individuals –  we must invest NOW.

This year’s World AID Day theme is Getting to Zero:  Zero new HIV infections. Zero discrimination.
Zero AIDS-related deaths
.   We now have a clear path to get to zero.

“We can end AIDS.  We have the technology.”

Let’s ensure we have the moral commitment and the financial investments to Get to Zero!

Guest Blog: Why I Trained with Team to End AIDS, and How I Kept Going During the Marine Corps Marathon!

November 22, 2011 in Team To End AIDS

by Tera Eilers

Tera EilersMy father Eric was definitely the inspiration to train for the Marine Corps Marathon with Team to End AIDS (T2). Five years ago I lost him to AIDS after his 20-year battle with the disease. I had been looking for a way to honor his memory for awhile and T2 seemed like the perfect fit. When I first started distance running and I would visit him, we would go to this pretty city park in Springfield, Illinois that had a great one mile loop. At this time, he was too ill to actually run or jog with me, but he would find a bench on the loop and cheer me on and hand out water or hold my cell phone. He was great and my biggest cheer leader. I knew if anyone would be proud of me for running a marathon it would be him.

During race day, every time that I felt like things were getting tough, the first thing that I did was put a hand over my heart where I had a folded picture of my father pinned to my singlet. Just remembering why I started this journey and what I was doing it for kept one foot in front of the other. Also, I can’t forget to mention my T2 Teammates! I can honestly say that there really was not one point where I hit a wall or said “I can’t do this anymore.” We had so much fun together interacting with each other and with the crowd…it was truly a FUN experience.

The biggest highlight of T2 was the people I met and the friendships that I made. Our pace group, The Teglas, was completely amazing. I don’t think that I have ever met a more supportive, encouraging, compassionate and motivated group of people in my life. We got through a lot together and made some really lasting relationships…and the best part is that we all came from different walks of life. What a beautiful compliment to an outstanding organization.

Tera Eilers is Resilience Program Manager with the United States Army

Deficit Reduction Committee Unable to Reach Agreement, but Impasse Is Not Necessarily Failure

November 21, 2011 in Policy/Advocacy, Uncategorized

by Ronald Johnson, Vice President of Policy and Advocacy

The Joint Select Committee on Deficit Reduction, widely known as the “super committee,” was unable to reach an agreement on a plan to reduce the federal deficit by at least $1.2 trillion over 10 years.  The 12-member committee was created by the Budget Control Act of 2011 (BCA) and charged with developing such a proposal.  The BCA mandates that if neither super committee nor Congress is able to reach an agreement, then automatic spending cuts will be enacted to meet the minimum goal of $1.2 trillion in deficit reduction.

The notion of “failure” has been bandied about heavily in the public commentary about the super committee’s impasse. AIDS United does not see the committee’s work as failure.  We commend those committee members who stood firm against accepting draconian spending cuts and against proposals that essentially would have gutted Medicaid and Medicare.  We applaud those members who insisted that an agreement needed to be fair and balanced and include meaningful revenue growth and expecting the wealthiest people in the country to share in the sacrifice needed to make a sizable reduction in the federal deficit.  We are grateful for the strong advocacy that called for protecting health care and safety net programs serving vulnerable populations.  Protecting the vast majority of people living in America, including people living with HIV/AIDS and other chronic diseases, is not “failure.”  It is what the Constitution calls promoting the “general Welfare.”

There is no question that the automatic spending cuts that will now be triggered, on top of the nearly $1 trillion in cuts already enacted under the BCA and cuts made in Fiscal Year 2011, will hurt.  The BCA itself was the result of a misguided yearlong focus on deficit reduction rather than on job growth and further efforts to stimulate the economy.  This distraction has been harmful.  It is never good to have to choose between “a rock and a hard place,” but in the closing days of the super committee’s deliberations, it became clear to many health care and social justice advocates that no deal was better than a bad deal.

The automatic cuts that will go into effect starting in January 2013 will now come under increased attention.  The law says that 50% of the cuts must be from the “national defense” area.  Even while the super committee was still trying to reach an agreement, some senators spoke about changing the law to protect military and defense spending.  Doing so would shift all deficit reduction efforts to non-defense spending, which includes spending on health care measures and the majority of spending for HIV/AIDS prevention, treatment, and research programs.  For that reason, AIDS United calls on everyone to oppose provisions that would exempt defense spending from the automatic cuts or lessen the severity of defense cuts without similar protections for non-defense spending.   AIDS United continues to call for balanced revenue measures that would reduce the need for spending cuts generally.

Again, let’s move on from the chatter about the super committee being a failure.  Let’s focus on real policy change that protects vital, life saving programs and achieves a balanced approach that shifts the focus to growing jobs and reviving the economy.  That’s the better financial approach needed to end the HIV/AIDS epidemic in America.

US Representative Schakowsky Seeks to Mobilize HIV Community Around 2012 Elections

November 17, 2011 in Policy/Advocacy

by Jimmy Schneidewind, Public Policy Associate, AIDS United

2012 could be the most important election year ever for people living with HIV, according to United States Representative Jan Schakowsky. On Thursday, November 10, AIDS United held an institute at the United States Conference on AIDS entitled, “HIV/AIDS and Election 2012,” at which Representative Schakowsky addressed the importance of the 2012 presidential and congressional elections and the impact the election results will have on HIV communities.

Many HIV advocates realize that biomedical-advances and policy initiatives over the past year and a half, that we are closer than ever to ending the HIV epidemic. Whether or not we capitalize on this extraordinary opportunity will largely depend on the next White House Administration and Congress’ commitment to implement and fund these important achievements. Schakowsky spoke to this, reminding the audience that the 113th Congress will be charged with reauthorizing the Ryan White Care Act, implementing the major reforms of the Affordable Care Act, continuing the implementation of the National HIV/AIDS Strategy, and determining funding appropriations for domestic HIV/AIDS programs through the Budget Control Act and fiscal year budgets.

Schakowsky implored the audience to begin organizing and advocating NOW for the candidates that will best represent the issues important to people living with HIV.  As examples of the progress that can be made when people become galvanized around an issue, Schakowsky pointed to union leaders in Ohio who struck down a law to curb collective bargaining rights for public workers, and the recent recall in Arizona of Republican State Senator Russell Pearce — the architect of Arizona’s austere anti-immigration law.

We have more options available to us in the fight against HIV than at any other time in our history. We have the first-ever National HIV/AIDS Strategy, written and conceived of by the federal government, which calls for a massive reduction in infections, stigma, discrimination, a massive increase in access to care, and a stated goal of ending HIV in this country. We have the roadmap and the momentum needed to make the next five years the most historic period ever for fighting HIV. If we are to follow through on the call to action by Representative Schakowsky and advocates across the country, we must ensure that we are represented by public officials who understand and are steadfast in the fight against HIV. That starts right now as we prepare for 2012: the most important election year yet for people living with HIV.

Philadelphia Talks About Community Coordination with the National HIV/AIDS Strategy

in National HIV/AIDS Strategy

by Carole S. Treston, Executive Director, AIDS Alliance for Children, Youth & Families

On October 20, the White House Office of National AIDS Policy convened the third in a series of public forums to address the implementation of the National HIV/AIDS Strategy (NHAS) and the Affordable Care Act (ACA). This session, “Sustaining the Community-Based Response to HIV” held in Philadelphia, was attended by community based providers, local government, medical providers, consumers and activists and academics from the Philadelphia region. The panel – local and national experts, talked about their perspectives on the expansion of Medicaid and other changes in the HIV funding and service delivery environment provided by the ACA and how that may support or possibly hinder achieving the goals of the NHAS.

One of the main goals of the NHAS is to reduce new infections by 25% and an audience member asked how we could achieve this, since new infections have remained at the same rate, more than 50,000/year- every year for a decade now. Did the Centers for Disease Control and Prevention (CDC) intend to fund differently or change its priorities? I’m not sure that was fully answered to the audience’s satisfaction, but Paul Kawata spoke about how the recent scientific data of 052 and the PreP studies support treatment as prevention. He pointed out that this and other advances show the potential for ending the AIDS epidemic in the US. It is possible. We have the knowledge, but do we have the political will (and resources) to achieve that vision? He reminded us that people living with HIV/AIDS (PLWHA) began this struggle and must continue to lead the efforts to the conclusion.  The expansion of Medicaid in 2014, theoretically will increase access to medications and treatment, but there remains a lot of concern in the community about diagnosis and treatment and that we still have a long way to go to educate people about the benefits of knowing their HIV status and getting into treatment. We know the role of Community Based Organizations (CBOs) and PLWHA is the front line there.

This hit home later that week. Philly is my hometown, my family is there and I still live there. That weekend, my niece told me one of her friends just tested positive. He’s a twenty two year old black gay man who lives at home with his mother and sister in North Philadelphia. With the support of his mother (she didn’t throw him out of the house, as unfortunately is too often the case) he is beginning to deal with his diagnosis, get into care and remarkably – tell his friends. But the two guys and one girl who also slept with the same guy, don’t want to know their status, don’t want to talk about it and will not get tested. We still have a way to go.

With the ACA, many patients (but not all) who were formerly uninsured and cared for through Ryan White dollars will now be eligible for Medicaid. Due to this expansion in a shrinking budget environment at the state and federal levels, the likelihood of shifts in Ryan White resources looms in 2013 and beyond. With the possible loss of Ryan White funding, CBOs that deliver only HIV services and/or rely solely or largely on Ryan White funding could be in jeopardy.  Also, the focus and investment in Community Health Centers, in particular Federally Qualified Health Centers (FQHCs) is likely to be an ongoing trend in health care delivery through this decade. FQHCs must provide a continuum of care, not specific to one population or one disease, regardless of a patient’s ability to pay.

The message was clear – organizations need to be preparing for the future NOW.  Two organizations that made the shift were featured, The Mazzonni Center (Phila) and Whitman Walker Health (DC).  Nurit Shein, Executive Director of the Mazzoni Center, and Don Blanchon, Executive Director of Whitman-Walker Health, both talked about expanding their mission beyond HIV to healthcare for the larger LGBT community, adopting a new business model, and working towards FQHC status. Both are continuing to take a hard look at what their population needs, identifying what their organization has done well, determining what was better done through collaborative formal partnerships with another agency, and, in some cases, deciding which activities and services they needed to divest because other organizations were doing them better.

The role of incarceration in fueling the HIV epidemic and health disparities kept coming up and the audience was not going to let their concerns go unanswered- this is the home of ACT-UP Philadelphia after all. Currently, when someone becomes incarcerated, they are terminated from Medicaid and they face an uphill battle to regain coverage after release, which presents a big problem for getting and keeping PLWHA in stable medical care post-release without Ryan White programs. The link between disproportionate rates of incarceration in black men and the disproportion rate of HIV and health disparities was well made by audience members. While the provision of care through community health centers to individuals when they are released from prisons, regardless of their insurance status or ability to pay was well described by Kathy McNamara from the National Association of Community Health Centers, the vital role that Ryan White resources play in linking and retaining PLWHA in care post- release.  No matter how different the future will be, there will still be a need for the Ryan White program — still as a safety net, but now for the ACA, if we are to achieve the goals of the NHAS and end the AIDS epidemic in the US in our lifetime. Wouldn’t that be something?