Winning the Battle Against HIV/AIDS

June 24, 2011 in AIDS at 30

by David Ernesto Munar, President/CEO of the AIDS Foundation of Chicago (AFC)

I am honored that the White House chose to commemorate the 30th Anniversary of the HIV/AIDS pandemic with me and other openly HIV-positive organizers from across the country. We gathered recently with federal officials to reflect on the salient lessons learned and milestones marked in the fight against HIV/AIDS over the past three decades.

Reflecting on this solemn occasion stirs a mix of emotions.

In 30 years, HIV has caused tremendous loss and human suffering in every corner of the inhabited world. But it has also inspired heroic acts of kindness, generosity, and leadership. Looking back, we must laud the significant medical, political, and scientific advances achieved but also sustain a firm understanding of the unfinished work that lies ahead. With record numbers of people living with HIV and increasing numbers of new infections, we must reinvigorate efforts to provide people with and at risk for HIV/AIDS with the health and social services, housing, prevention, and human-rights protections they so desperately need and deserve. HIV knows no borders and neither should our compassion and actions.

Recognizing the rapid maturity of HIV medical, behavioral and social sciences, the U.S. Centers for Disease Control and Prevention now considers HIV a winnable battle. To truly win the future, the U.S. must not relent until we’ve won the fight against HIV/AIDS.

Thankfully, the U.S. is poised to make tremendous progress. For the first time, the U.S. has a comprehensive National HIV/AIDS Strategy, which President Obama unveiled in July 2010. The Strategy provides a thorough analysis of the HIV/AIDS epidemic in the U.S. and maps a pathway to decrease HIV infections, improve health outcomes for those of us living with HIV, and decrease HIV-related health disparities among the three groups most severely impacted: African Americans, Latinos, and men who have sex with other men. Winning the battle against HIV must start with realizing the measurable targets of the Strategy.

In 2010, Congress enacted and President Obama signed into law the Patient Protection and Affordable Care Act, which could quite literally reverse the epidemic’s spread once the law is fully implemented.  From the very beginning, inadequate healthcare access, discrimination, and indifference sowed the seeds of today’s burgeoning epidemic. By eliminating healthcare insurance discrimination against those who desperately need it, expanding public and private sources of affordable insurance, and guaranteeing a minimum standard benefit, HIV care will become more readily accessible than ever before.

But the most significant portions of the law will not take effect until 2014, which is why our current safety-net systems—namely Medicaid, Medicare, and the Ryan White HIV Act—are so critically important.  In over a dozen states, nearly 10,000 individuals with HIV languish on waiting lists for medications through their state’s overburdened AIDS Drug Assistance Programs, which desperately need an infusion of state and federal funds. Hundreds of thousands of other HIV-positive Americans remain unaware of their infection or have simply given up and are not seeking or receiving medical attention, at grave danger to themselves and others. Engaging and assisting these individuals will take valiant efforts but will also pay dividends to the nation by realizing future healthcare savings.

Even after federal health reform is fully implemented in 2014, the Ryan White program will be instrumental in providing wrap-around services not covered by healthcare insurance for low-income people with HIV. Moreover, a small number of people in the U.S. will remain ineligible for federal healthcare assistance that can only be met through Ryan White services.

U.S. leadership in response to global AIDS must also grow so that the poorest and most affected countries in the world benefit from the very best tools and knowledge available to control HIV. Our nation’s continued leadership in response to global AIDS—spearheaded by leadership from President George W. Bush who created and rapidly expanded the President’s Emergency Plan for AIDS Relief—will also ensure that the wealthy nations of the world sustain and grow their investments in stopping HIV/AIDS globally. Increasing investments in global AIDS is not just a moral and public health imperative but, as documented by the CIA, will help abate civil unrest and destabilization that can breed factions sympathetic to terrorism and threaten global security.

Earlier this year, groundbreaking, new evidence that antiretroviral therapy not only stabilizes HIV-positive people medically but also dramatically curbs new infections heightens the urgency to expand healthcare and testing access and wrap-around services, such as housing and case management, that are instrumental in successful and continuous medical engagement. Scaling access to medical care in an ethical and responsible way without losing focus on human rights and other pivotal strategies will be the basis for a successful and comprehensive anti-HIV approach moving forward.

It is worth underscoring that the battle against HIV/AIDS is waged daily in communities around the world by non-governmental organizations such as the AIDS Foundation of Chicago that keep urgency to the fight, demand accountability, and innovate creative, new ways to inspire individuals, institutions, and large public and private bureaucracies to do more against HIV, do it better, and continuously aim to achieve greater results.

Inspired by those of us living with HIV—who stand the most to gain or lose from society’s responses to this epidemic—the HIV/AIDS advocacy movement is by itself among the greater accomplishments of the history of the pandemic. We have changed the way affected community members are engaged in healthcare decision-making, awoken political awareness among the most disenfranchised segments of society, and shined a light on the symptoms and causes of structural inequities.

The fourth decade of HIV/AIDS will be marked by how well, or how poorly, societies around the world address such fundamental determinants of health as poverty, access to healthcare and prevention, housing, and basic human and civil rights needed for individuals and communities to thrive.

AmeriCorps Week in Tulsa

June 23, 2011 in AmeriCorps

For AmeriCorps week 2011, Team Tulsa headed west to Clara Waters Community Correctional Facility in Oklahoma City. The facility, which sits right next to the biggest theme park in Oklahoma, holds about 275 men. It is a step below minimum security (note the word community in the title) and the offenders are allowed to walk around freely for the most part.

Team Tulsa headed down with former AmeriCorps member, Michelle Sullivan, for a health fair at the correctional center. Every one of our host sites was represented at the health fair along with many other organizations, including the Oklahoma State Department of Health, Guiding Right, Inc. and many more. The most popular booth seemed to be the ones that offered either candy or essential hygiene products, like toothbrushes and toothpaste, but offenders were encouraged to visit all the booths.

During the health fair, many of the booth representatives taught classes in another building. Our own Danielle Matheny taught a packed class about Hepatitis C transmission, prevention, testing and treatment. The offenders were offered a cookie and a toothbrush if they attended a class, an offer which many took advantage of.

Overall, the health fair was a major success. The offenders were able to socialize, snack and gain valuable knowledge about their health, both inside the facility and out. The health fair also gave Team Tulsa the opportunity to see inside one of Oklahoma’s many correctional facilities, and hear the stories of the men who reside there.

HIV Theatre in New Mexico for AmeriCorps Week

June 17, 2011 in AmeriCorps

On May 19 and May 20, Team New Mexico presented Voices behind the Virus: A performance based on the true stories of New Mexicans living with HIV.  The performance took place at Warehouse 21 in Santa Fe, and at the Filling Station in Albuquerque, and was part of a series of events for AmeriCorps week.   The events both featured free, anonymous HIV testing, with rapid testing sponsored by Southwest CARE Center at the Santa Fe performance, and testing sponsored by the HIV/AIDS Advocacy Network at the Albuquerque show.  We hosted receptions during both performances, with food sponsored by the New Mexico Commission for Community Volunteerism.

Tickets to the show were sold for a suggested donation of 10 to 15 dollars.  Proceeds were matched by AIDS United and went to benefit Camp Corazones, a Santa Fe camp for children affected and infected by HIV that recently began experiencing financial difficulties.  Much of the HIV/AIDS community in New Mexico had rallied to support Camp Corazones and we thought this was a great cause for our performance.

Devin Peterson of Santa Fe Habitat for Humanity

From left to Right: Southwest CARE case manager Adam Lord, AmeriCorps Volunteer Emily Knittle, and Southwest Care case manager Chris Weber

Voices began as an idea to portray first person narratives of people living with HIV through monologues style theatre.  Our goal was not only to give voice to those infected by HIV, but also to educate, create awareness, and provide insight and perspective in to their lives.

Robert Sturm of the New Mexico Community AIDS Partnership and Jewel Cabeza de Vaca of Camp Corazones

Maggie Cunha, AIDS United and AmeriCorps volunteers AJ Ben and Amy Rumack

We began by conducting interviews with community members, and compiled portions of those interviews verbatim into a script.  We were also fortunate enough to have the assistance of Skye Fort and Diana Delgado, two UNM Theatre and Dance students who took the script and turned it into a performance.  Skye and Diana began rehearsals about one month before our scheduled performances, and were able to develop and create several original pieces inspired not only by peoples’ stories, but also by prevention materials, condoms and HIV testing.  The performance featured several short skits on condoms including a demonstration, and also rapid testing being acted out on stage.  It also dealt with the issue of medication and HIV treatment, and illustrated the difficulties and overwhelming nature of treatment.  Several stories were told through monologues which were broken up into parts during the performance.  The stories and performance pieces ranged from powerful, emotional and thought provoking, to inspirational and light-hearted.

AmeriCorps volunteers Tim Zaccaria, AJ Ben, and Amy Rumack

From left to right: Craig McAdams, Drew Morrison, Tori Corcoran, Diana Delgado, Laurel LeDoux, Nate Warren, Christie Carter, Skye Fort

It was amazing to listen to some of the feedback we received from those who attended, particularly those whose stories were used in the performance.  Since the performance, we have received interest from other organizations interested in hosting a performance of Voices.  We filmed both the performance and rehearsals, and we plan to distribute the video among prevention programs around the state, as well as to other organizations interested in using the performance to educate about HIV.

We would like to take this opportunity to thank everyone who was willing to sit down with us and share their story.  We would also like to thank our producer Skye Fort and director Diana Delgado; as well as the actors: Nate Warren, Drew Morrison, Christie Carter, Craig McAdams, and Tori Corcoran; and crew: David Torres and Joe Montoya.  We would also like to thank the New Mexico Commission on Community Volunteerism for sponsoring our event.

An Issue of Social Justice

in AIDS at 30

by Shannon Wyss
AIDS United Grants Manager

When HIV/AIDS first hit the public consciousness in 1981, I was nine years old.  I remember little of the disease in its first decade. My first recollection was when I was watching the evening news, probably in the mid-‘80s. I remember a graphic projected on the screen to the right of the newscaster’s head. It consisted solely of the word “AIDS” in big red letters except that in place of the letter “I,” it had a test tube filled with blood. I don’t remember wondering what AIDS was, so I must have heard about it already. And yet that graphic sticks in my mind, all these years later.

So there is a degree to which HIV has always been a part of my world. While I technically experienced a “world without AIDS,” those years were early in my life, before thoughts of sex, sexuality, drug use, or anything else related to HIV. Growing up, I was fortunate to go to a school that, while devoutly Catholic, taught honest sex education to its students. Learning about safer sex was always a part of my school-based sex ed curriculum, and HIV was always taught in biology classes – although the teachers were very clear that any sexual activity outside of a monogamous, heterosexual, committed-in-marriage relationship for the purposes of procreation was both wrong and a sin. An interesting mix of the progressive and pragmatic with the conservative.

And yet, to a great extent, HIV/AIDS did not enter my life until college. Certainly, I knew about the disease’s existence. But I did not know anyone “out” about her/his HIV status until early adulthood. HIV was “out there,” a terrible scourge that I knew disproportionately affected gay and bisexual men but that did not affect my personal life. So I missed the early years – the certain death sentence that was an HIV diagnosis, attending funeral after funeral, watching friends and loved ones die a horrible death, the survivor’s guilt, the ACT UP rallies, the civil disobedience arrests.

All of those things have had an incredibly deep – indeed, a devastating – impact on the LGBTQ community, which I proudly and eagerly joined in college in 1993. HIV became more personal to me then. And yet it was still several years before I knew anyone who was out about having HIV or AIDS – and I only learned about his diagnosis after his death. Another individual, whom I knew in high school, is suspected to have died of AIDS-related complications while I was in college. But if true, that fact has been quite successfully shrouded from the public.

Being queer-identified has made HIV more “real” in some ways. I am part of a highly-stigmatized community. And that very stigma is what helps to put my sisters and brothers at greater risk of being infected. But it is not only LGBTQ people who live with this stigma. Prejudice exists against many other groups in society – people of color, immigrants, women and girls, youth, drug users, sex workers, and so many others. Members of those communities are, not coincidentally, also at great risk for HIV/AIDS. What puts them at risk is not their identities but the results of the hatred, stress, and fear under which they must live.

So while, yes, HIV/AIDS is a medical issue, it is more importantly an issue of social justice.  And while, yes, “everyone is at risk for HIV,” some are more at risk than others. And that risk springs directly from the prejudices and unequal distribution of power and resources in our country – indeed, in our world.

The fight against HIV will not be won solely by a vaccine or by distributing billions of condoms and clean needles and containers of spermicide. The fight against HIV will be won only by eliminating racism, sexism, transphobia, homophobia, xenophobia, ableism, ageism, fatphobia, and a host of other hatreds and institutional inequalities that keep some people in power and control at the expense of their fellow human beings. This is why I am honored to be a part of the fight against HIV/AIDS.

What concerns me, 30 years into this epidemic, is that we seem to have learned little about the connections between HIV and inequality, between AIDS and power and privilege and prejudice. We are very good, now, at doling out medicine. But we aren’t always very good at making prevention messages relevant to folks’ everyday lives, at keeping people under the care of a doctor once they are diagnosed, at making sure everyone can afford her/his HIV drugs, at reaching at-risk communities. And we, as a country, seem to be avoiding at all costs larger discussions about all those hatreds and inequalities that we must get rid of in order to eradicate HIV.

But that is probably not too surprising. As a country, we have yet to have a national dialogue on any of the things listed above. Why should we treat HIV any differently? But it is just such honest, painful, but necessary discussions that must be had to win the fight against HIV – and for us to reach our full potential as individuals, as one community and as various communities, as a country, and as a world of interconnected human beings.

I am hopeful that those of us who realize the critical importance of making our society – our world – a more just, peaceful, and healthy place can continue to influence those around us who may not be “there” yet. We can attempt to model that all-important goal of Social Justice not only through our jobs but through our interactions with our families, friends, colleagues, neighbors, religious communities, and strangers on the street.

While I cannot change the world, I will work as hard as I can to improve my little corner of it so that no one has to live either with HIV/AIDS or with the hatred, fear, and inequality that put so many at risk for this completely unnecessary, totally preventable, and yet still incurable disease.

What will you do to help stop HIV?

AIDS United Adopts Position on Fiscal Policy

June 16, 2011 in Policy/Advocacy

by Ronald Johnson, Vice President of Policy and Advocacy

With the U. S. Treasury Department’s August 2 deadline for raising the federal debt limit looming like a Sword of Damocles over their heads, Congress and the White House are intensifying efforts to reach an agreement that would allow a debt limit increase bill to be passed.  There is near total recognition of the political reality that raising the federal debt limit will require an agreement to reduce significantly the federal deficit and long-term debt owed by the U.S. government.  However, there is little yet that approaches a broad consensus among Congressional Democrats, Congressional Republicans, and the President on how to reduce the federal deficit and the debt.

In a previous Policy Update, we noted why the current debate over federal fiscal policy matters to the HIV/AIDS community (click here to see the earlier article).  Those reasons have become only firmer in the subsequent weeks.  Real threats remain to the current structure of and funding for Medicaid and Medicare and to discretionary spending levels for health care, HIV/AIDS programs and services, and safety net programs for low-income and other vulnerable populations.  Some of the current proposals or ideas would result in cutting spending starting in FY 2012 back to levels that would necessitate devastating service cuts.  The 2012 fiscal year begins Oct. 1, 2011.

Given that the important fiscal policy decisions made by Congress and the administration over the next seven weeks will have a huge impact on federal spending and on Medicaid and Medicare for the coming year and many years thereafter, AIDS United has adopted a policy position on the fiscal issues.

AIDS United recognizes that the size of the total federal deficit and the long-term debt owed by the United States together constitute a major problem that must be addressed.  AIDS United also recognizes that discretionary spending cuts will be a part of a final deficit reduction package.  AIDS United strongly rejects the concept that spending cuts should be the only component of a final deficit reduction package.  Therefore, AIDS United supports a balanced approach to deficit reduction that includes revenue growth and does not disproportionately cut funding for health and social safety net programs, and does not drastically alter Medicaid and Medicare.  AIDS United will oppose vigorously any proposal that attempts to solve the deficit and debt crisis at the expense of people living with HIV/AIDS, low-income people, and other populations that already experience unjust health, social, and economic disparities.

AIDS United will work to keep you informed of the fiscal policy debates and to provide you with Action Alerts and other tools to engage you in the process.  Congress and the President need to hear from all of us that the fiscal policy decisions matter to us and that we will not be silent or complacent.

Click here for more background materials on the potential impact of fiscal policies.

Click here for a more detailed guide to the federal budget and the deficit.

Team Carolina Joins the Fight Against Hunger for AmeriCorps Week

June 13, 2011 in AmeriCorps

“I haven’t met you yet, have I?” a man cordially asked me, as I ventured onto the Inter-Faith Food Shuttle’s Raleigh, N.C. farm, along with dozens of fellow AmeriCorps members.

He was correct. We had not met yet, so I introduced myself as Denechia Powell of Georgia, proud member of AIDS United AmeriCorps Team Carolina. We shook hands, he learned that I was a Georgia Bulldog, and I learned he was a Tar Heel devotee.

It was not until later that I realized the man I had chatted with was Mr. Bob Eaves, husband of Governor Bev Perdue and the First Gentleman of North Carolina. Mr. Eaves had been invited to the farm in honor of AmeriCorps Week, which was observed this year from May 14 to May 21, 2011. AmeriCorps Week gives AmeriCorps members a chance to come together and show local, state, and federal government officials how invaluable our service is to our communities.

AIDS United AmeriCorps Team Carolina, along with other local groups, including Access JobLink AmeriCorps and Public Allies North Carolina, gathered at the Inter-Faith Food Shuttle’s farm on Thursday, May 19, 2011 to get our hands dirty planting vegetables. We learned that the Inter-Faith Food Shuttle strives to end hunger in the community by recovering food from local donors (6.7 million pounds of food are projected to be recovered in 2011). The innovative non-profit operates a farm in Raleigh and another in Carrboro, N.C., where produce is grown to be sold at local farmer’s markets and at-risk youth are instructed on how to develop their own gardens.

Our time on the farm not only provided us with an opportunity to give back to our community, but also a chance to meet other AmeriCorps members and share our experiences. We also learned eye-opening facts about farming. For example, did you know that only three percent of the population in the United States grows its own food? You really do learn something new every day as an AmeriCorps member.

As we surveyed the rows of freshly planted vegetables at the end of our day of service, Team Carolina was amazed at how much we were able to accomplish in such a short period of time. It is our hope that our service project, along with the many others completed across the country during AmeriCorps Week, serves as proof that a world without AmeriCorps would be a bleak one indeed.