Team Indy’s Living History Project

October 5, 2011 in AmeriCorps, AmeriCorps Alumni

by Nate Mensah,  AIDS United AmeriCorps Team Indianapolis

On September 17, Team Indianapolis participated in the Living History program at the Richard L. Roudebush Veteran Affairs Medical Center (VAMC) in Indianapolis. This project allowed the team to interview patients and learn about their life stories. The VAMC provides acute and chronic care for veterans as well as serving as a rehabilitation facility. This was a special event that was first proposed as an idea by Jason Grisell (Program Manager of the Health Foundation of Greater Indianapolis) as a 9/11 service project. In order to maximize the number of patients interviewed, Team Indy volunteered along with other AmeriCorps Alumni, AmeriCorps VISTA members, and Public Allies.

Our visit was special because many of us bonded with the patients we interviewed. The volunteers decided to pair up and interview in teams.  It would be difficult to say who enjoyed chatting more: the volunteers or the patients. Our conversations ranged from the standard topics of interests in music, movies, and foods, to some very unexpected yet entertaining topics. A couple of our team members had a full lecture on the harmful aspects of aspartame and the benefits of eating raw vegetables! Others encountered some powerful emotions when the veterans reminisced about family members and friends.

The goal of this project was to learn more about the patients, and to determine if there are ways the hospital can improve the level of care the patient is receiving by meeting an unmet need that they aren’t aware of. It was fascinating to have conversations with these individuals, and here how their time serving our country changed their lives. All of the volunteers enjoyed learning about the patients, and by the day’s end, numerous patients were very pleased to have the chance to talk with new people as well (even on a Saturday morning!). In fact, they were hopeful and eager for us to return to do the event again. It meant a lot to us that the patients seemed to truly enjoy talking with us.

As a thank you for allowing them to be interviewed, we provided a care package consisting of a toothbrush, toothpaste, deodorant, shampoo, a journal, a pen, and an activity booklet with crossword puzzles. Even though we were only there for a few hours, we know of the long-lasting impact we have made on the veterans, and fully enjoyed doing so!

The United Nations, HIV, and the Law

September 28, 2011 in Southern Initiatives, Syringe Access Fund

by Robert BB Childs, MPH, Executive Director
North Carolina Harm Reduction Coalition (NCHRC)

Childs-Presenting-at-UNDPRecently I and my colleague Deon Haywood, Executive Director of Women with a Vision (WWAV) were invited to present at the Global Commission on HIV and the Law, sponsored by the United Nations Development Program, which is one of the cosponsors of UNAIDS, on September 16th and 17th, 2011.

The Global Commission on HIV and the Law interrogated the relationship between legal responses, human rights and HIV. The Commission also focused on some of the most challenging legal and human rights issues in the context of HIV, including criminalization of HIV transmission, behaviors and practices such as drug use, sex work, same-sex sexual relations, and issues of prisoners, migrants, children’s rights, violence against women and access to treatment. The Global Commission on HIV and the Law is developing actionable, evidence-informed and human rights-based recommendations for effective HIV responses that protect and promote the human rights of people living with and most vulnerable to HIV.

According to UNDP HIV Practice Director Jeffrey O’Malley, “The law and its application can have an impact on the lives of people, especially those who are marginalized and disempowered. The law is a powerful instrument to challenge stigma, promote public health, and protect human rights. We know that the laws and policies of High Income countries also affect developing countries. We have much to learn from the positive and negative experiences in high income countries on the interactions between the law, legislative reform, law enforcement practices, and public health responses.”

My presentation focused on how drug paraphernalia laws in North Carolina lead to the spread of HIV, hepatitis, sex work, incarceration and poverty.  Deon presented on the negative effects of the Louisiana Prison Industrial Complex, as well as how negative laws against sex workers lead to the spread of HIV.  Both NCHRC and WWV were mentioned in the final testimony by UNDP HIV Practice Director & UNAIDS Representative Jeffrey O’Malley for their fine work in the face of adversity.  The members of the group were deeply touched by NCHRC’s & WWV’s testimonies and were saddened on hear about the lack of services and legal barriers against the people most vulnerable to HIV infection in the South.  Also attending the meeting was Congresswomen Barbara Lee, Congressman Jim McDermott, members of the UN, members of the Danish, Austrian, German & Canadian Parliament and many other HIV experts.

Responding on behalf of the Global Commission on HIV and the Law, Congresswoman Barbara Lee (D) of Oakland, a Commissioner stated “the effectiveness of the global HIV response will depend not just on the scale up of HIV prevention, treatment and care, but on whether the legal and social environment support or hinder programs for those who are most vulnerable. This requires bold and effective legal and policy measures to reach out to vulnerable communities and individuals at risk. The Bipartisan Congressional HIV/AIDS Caucus, which I co-chair will deal with these very issues.”

For more info on the commission go to:
http://www.hivlawcommission.org/index.php?option=com_content&view=article&id=64&Itemid=70&lang=en

Guest Blog: You Talking to Me? A tale of dying in plain sight

September 27, 2011 in HIV/AIDS Awareness Days

by Keith Green, AIDS United Advocate and Director of Federal Affairs with AIDS Foundation of Chicago

At the time that I was diagnosed with HIV, I really didn’t even realize that I was at risk. I was a senior in high school and helped to organize a blood drive as a community service requirement for the Senior Boys Council. My fear of passing out and losing my “cool” status nearly kept me from donating, but my girlfriend convinced me that the really “un-cool” thing to do would be to not lead by example. So, much to my dismay, I gave in. The experience would change my life forever.

My ignorance with respect to risk was mostly related to the fact that I didn’t identify as gay. I’d been dating the same girl on and off throughout my high school years, and several other girls in between. My intimate interactions with a couple of my “boys” were not necessarily what any of us would call “gay.” We all had girlfriends, and just did what we did with one another from time to time. In retrospect, I still wouldn’t call it gay. We were all very clearly bisexual.

In many ways, my HIV diagnosis forced me to assume a gay identity. Upon learning that I was positive I broke up with my girlfriend and have not had any meaningful relationships with women since. My experience is that it is much easier to disclose my HIV status to other gay men than it is to women. Perhaps that’s because, for the past 30 years, HIV has been very much a part of gay culture. Perhaps that’s why, even in 2011, Black men who have sex with men but don’t necessarily identify as gay disassociate themselves from the risks of HIV.

So, as we acknowledge National Gay Men’s HIV/AIDS Awareness Day this year, it is my hope that we’ll keep in mind the diversity within the gay community. Specifically, I hope that we’ll continue to acknowledge the wide range of people whose identities oftentimes get lumped into the classification of gay for the sake of simplification, but don’t recognize their risk as a result. It is my hope that, as an HIV advocacy community, we recognize that identity and behavior are not mutually exclusive, and that there are a host of “gay” men who turn a blind eye to our messaging because they assume that we can’t be talking to them. I was once one of those men, and I’m committed to making sure that other men who look and behave like me don’t make that same mistake!

Guest Blog: Make it Grow to Save My Life

September 23, 2011 in Access2Care

Hydeia Broadbentby Hydeia Broadbent, HIV/AIDS activist

Who would believe in 2011 with so many advancements in the HIV/AIDS world we would still be at a place where people living with HIV/AIDS are getting the quality healthcare they deserve?

After a positive HIV test result many are told there is indeed hope and that HIV/AIDS is no longer the death sentence it once was. Then comes the
reality that yes, there is hope, but you might not have access to that hope, well unless you have the right access to the right care at the right time.

For those who may not know me I was born HIV positive, with full blown AIDS by the age of 3- that was in 1987. The late 80′s was very dark time for
people living with AIDS, people were dying at an alarming rate- there was no hope for you if you had AIDS. My parents were told I would not live pass
the age of 5. But thanks to clinical trials for new medications I am still alive 23 years later.

At a very young age, I saw countless friends lose their lives to AIDS despite fighting everyday to stay alive. We all put ourselves through hell for a
chance at hope. Hope for a better tomorrow, hope for life and we did this not just for ourselves but for others to have a better future living with
AIDS.

We have come a very long way, in 2011 AIDS truly does not have to be a death sentence; we are in a day and age when a woman living with AIDS can give
birth to a child of her own without passing HIV unto her unborn child. We are in a time where there is hope and a person living with AIDS can live a
long and fruitful life. However, that hopeful and fruitful life depends on your ability to access quality healthcare. Would you believe that in 2011,
for a variety of complicated reasons, some American people still haven’t accessed the physicians and mental health support professionals they need to help deal with their HIV-positive status?

I continue to deal with the scare of not knowing if there will come a time when I won’t have access to the care that I need. That is a scare I wish on
no one, the fear of not knowing. The fear of feeling like your county, our health system has somehow failed you, the horrible feeling that your
neighbor is too busy to pay attention to what is going on and showing they don’t care. The horrible feeling that no one hears your plea for help, the
plea to help you stay alive. No one should go to sleep worrying about not having access to quality healthcare they need to stay alive. If I said I
wasn’t stressed or haven’t cried because of a little fear and doubt, I would be lying.

But through it all, I’ve been able to pull myself together and get a grip. I became proactive, I stopped stressing and started researching on what to
do next. I found out so many others living with HIV/AIDS are facing the same reality I faced. As I talked with others dealing with my reality we all asked
the same question: Why have so many people not living with HIV/AIDS turned their backs on us? This is America, the land of the free, the home of the brave,
we fight for the fair treatment of so many others, civil rights and human rights, but when it comes to access for care for those living with HIV/AIDS
we have turned a blind eye.

So what you can do? There are many ways for you to get involved. Something as simple like calling your local U.S. Senators and U.S. Representatives to
increase funding for programs like Part D of the Ryan White Care Act or to support health care reform, which will help increase access to care for
people living with HIV/AIDS. Share how you are supporting the HIV/AIDS community through your own personal and professional networks and through social
media. Donate to programs like AIDS United’s Make it Grow campaign. Efforts like Make it Grow work to create a lasting and systemic change in
communities most affected by the AIDS epidemic. Improving health outcomes and strengthening local service systems is key to connecting people living
with HIV/AIDS to the lifesaving care they need.

I’m often amazed at how such simple acts can help save a life- they continue to save mine.

Reducing Harm and Building Communities: Addressing Drug Use in the South

September 20, 2011 in Southern Initiatives, Syringe Access Fund, Uncategorized

by Robert BB Childs, MPH, Executive Director, North Carolina Harm Reduction Coalition (NCHRC)
and
Melicia Laroco-Molter, member, NCHRC

Harm-reduction-group-shot

On September 8th and 9th, 2011, around 200 people from all corners of the South converged in Durham, NC for the first conference to discuss issues surrounding drug use, sex work and harm reduction in their communities. The attendees represented many groups including representatives of the military, law enforcement, Republicans and Democrats the North Carolina House of Representatives, outreach workers, health professionals, academics, sex workers, people of transgender experience and drug users. The conference kicked off with a blessing from Rev Dr. Tamsey Philips Hill, a chaplain at Duke University Hospital and a staff member of Partners in Care of the Carolinas. Deon Haywood of New Orleans’ Women with a Vision and Robert Childs of the North Carolina Harm Reduction Coalition led an overview of the conference.

Rep. Verla Insko (D-56) touched upon her experience as a health program administrator at the University of North Carolina as she spoke about the need for more harm reduction practices in North Carolina and throughout the South. Rep. Glen Bradley (R-49), an admirer of Fredrick Douglass’ vision of the Constitution, then spoke about the need for political advocacy for syringe decriminalization and the lack of effectiveness of the war on drugs. Daniel Raymond, the Policy Director of the Harm Reduction Coalition, then gave an eloquent overview of harm reduction. Daniel spoke about those that touted the idea “if they [drug users] don’t want to get HIV, it’s just that simple – stop using drugs.” Noting their ignorance of drug use, he pointed out the true meaning: “If you are using drugs, you’re life isn’t worth saving.” Harm reduction, in effect, shows people, “[r]ight here, right now, your life is worth saving.”

Several testimonials followed. Perry Parks, a Vietnam War veteran, recipient of the Distinguished Flying Cross, and current President of the North Carolina Cannabis Patients’ Network, recounted his experiences with chronic pain and pain management through the use of cannabis, and his subsequent loss of his hard-won military reputation. Bob Scott, a former captain of the Macon County Sherriff’s Office in Franklin, NC, described his experiences with the war on drugs in rural North Carolina. Patrick Packer of the Southern AIDS Coalition, testified to the lack of attention and services given to Southerners living with HIV/AIDS. Leigh Maddox, a retired captain of the Maryland State Police and current Special Assistant State’s Attorney for the State of Maryland, gave a deeply personal testimonial on how her own personal and professional losses to the war on drugs fueled her advocacy to view substance abuse as a health problem and her anti-prohibition stance. In addition, Human Rights Watch released an in-depth report on the status of human rights and HIV in the Southern United States, which will be released on their website soon.

Video of the opening session of the conference can be found here, compliments of Richard Cassidy.

This provided an inspiring platform for the rest of conference. The panels ranged from building alliances with law enforcement and faith-based communities to fundraising and program implementation to the rising use of crack cocaine and prescription drugs in the South. Prof. Sam MacMaster of the University of Tennessee’s College of Social Work highlighted the high prevalence of crack cocaine use in the South and how it intersects with HIV/AIDS. The conference provided, not just a learning experience, but also as a place to meet others in the South that are working on the same issues. Many participants are from organizations that are not based in the hubs of Atlanta, New Orleans, Durham or DC and often do not meet others in the field. As one participant pointed out, “Finally, I do not feel alone.”

Mapping Pathways at the National HIV Prevention Conference

August 23, 2011 in Policy/Advocacy

by Jessica Terlikowski, Director of Regional Organizing

Clinical trial results over the last year have demonstrated that new prevention approaches such as ARV-based microbicides, pre-exposure prophylaxis (PrEP), and expanded treatment of people living with HIV can significantly reduce a person’s risk of contracting or transmitting HIV. The findings give the HIV community new hope, but also raise new and critical questions of how, if, where, when, and to whom these new strategies will be made available.

To ensure sound decisions that best address the epidemic, being careful to preserve human rights and improve the health of those living with and at risk to HIV, AIDS United, AIDS Foundation of Chicago, Desmond Tutu HIV Foundation, and NAZ India are asking a number of questions regarding the multiple uses of ARVs for prevention. People living with HIV/AIDS (PLWHA), policymakers, government officials, advocates, clinicians, researchers, industry experts, and other stakeholders have important perspectives to share and must be at the table to discuss the complexities of these new strategies. This collective effort to create and support a research-driven, community-led global understanding of the emerging evidence around adoption of ARV-based prevention strategies is Mapping Pathways.

As part of this unique project, AIDS United and the AIDS Foundation of Chicago hosted a lively community input session at the National HIV Prevention Conference last week to learn what HIV prevention leaders think about implementing the diverse range of ARV-based prevention tools. The group generally agreed that we are in an exciting time, but also questioned how the HIV community and the U.S. government could even consider implementing a strategy that provides medications to HIV-negative people when tens of thousands of people with HIV in the U.S. cannot access the drugs they need to stay healthy. Various participants also noted that not all PLWHA are ready to start treatment. Some individuals expressed concern that the rights of PLWHA could be compromised in favor of the public’s health and stated that systems must be instituted to mitigate coercion and protect the rights of the individual. Advocates were equally concerned that interventions such as PrEP would only succeed in worsening HIV-related health disparities in the U.S. since the cost is so great, treatment access is already limited, and both state and federal governments continue to cut HIV programs. One advocate observed that the ARV-focused discussion has resulted in the marginalization of other bio-medical strategies including vaccines and non-ARV based microbicides.

We also asked participants to share their thoughts on the types of data, tools, and information they believe are needed to help answer the more complicated questions and better address the community’s concerns. Several suggestions were made, but common to all of them was a request that tools be simple, accessible, and useful for community stakeholders and decision makers, including:

  • Simple factsheets explaining the various ARV strategies, how they work, and the outcomes of each of the clinical trials;
  • An if-then tool to help stakeholders better understand the potential implications of trial results; and
  • A voice of the community document that includes statements from diverse individuals explaining why access to a broad range of HIV preventions, including those that are ARV-based, are important.

AIDS United and its partners look forward to continuing these conversations with our stakeholders around the country. You can stay connected to Mapping Pathways and all the latest ARV-based prevention news through our blog, Facebook, and Twitter. We invite you to join the dialogue and contribute YOUR thoughts by taking the Mapping Pathways survey.