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World Hepatatis Day 2014: "Think Again"

By Christine Rodriguez
Public Policy Manager
National Viral Hepatitis Roundtable

World Hepatitis Day, on July 28, is an annual reminder of the fight that remains to battle this global killer. Around the world, viral hepatitis -- primarily hepatitis B and C -- kills as many people as HIV/AIDS, and in the United States, hepatitis C-related liver illnesses are both a leading cause of death for people living with HIV/AIDS (PLWHA) and independently surpassed HIV/AIDS deaths in 2007. As one of the communities disproportionately affected by viral hepatitis, at least 25% of PLWHA also have hepatitis C, and about 10% are co-infected with hepatitis B.

Despite having an effective vaccine and treatment for hepatitis B, and a cure -- with regimens becoming shorter and less toxic -- for hepatitis C, the epidemic continues unabated. Not only are five million people living with viral hepatitis in the United States, but a hepatitis C epidemic is now emerging among youth under 30 who inject drugs. World Hepatitis Day should serve to remind us that, in a country that claims to have the best health care system in the world, this is absolutely unacceptable. While US pharmaceutical companies have recently delivered exciting new testing and treatment options (with more to come), there has yet to be a comprehensive and adequately resourced federal response.

Viral hepatitis also disproportionately affects communities of color (including African Americans, Latinos, Asian and Pacific Islander Americans, and Native Americans), people who engage in injection drug use, military veterans, and the “baby boomer” generation (born from 1945-1965). With most cases presenting no symptoms, and inadequate testing and provider understanding of viral hepatitis, an estimated 65-75% of those living with viral hepatitis do not know their status, earning it the moniker “the silent epidemic.” Over decades, the liver can be damaged to the point of cirrhosis, advanced stage liver disease, or liver cancer. Liver cancer is one of the most aggressive cancers, and the number two cancer killer in the world.

This doesn’t have to be our reality. World Hepatitis Day is an annual opportunity to reaffirm our commitment to ending the viral hepatitis epidemic, and display leadership equal to the potential of our considerable resources. The National Viral Hepatitis Roundtable (NVHR) is committed to this goal through its programmatic and policy advocacy work on behalf of its 200+ member organizations. Included among the policy issues NVHR addresses are implementing new U.S. Preventive Services Task Force hepatitis B and C testing recommendations, removing barriers to treatment access; increasing federal resources for screening, vaccination, education, and linkage to care; and access to evidence-based harm reduction strategies to improve drug user health, including lifting the ban on federal funding for syringe services programs. On the program side, we are working with community organizations, public health departments, and medical providers to expand their capacity to test “baby boomers” for hepatitis C.

In commemoration of the 2014 campaign, “World Hepatitis Day: Think again,” we urge you to do just that -- think again. Think again about viral hepatitis, about prevention for yourself and your community, and about joining the fight to end this epidemic.

If you’re interested in more information about viral hepatitis, or how you or your organization can get involved in policy change, check out the links below:

Free membership in NVHR is open to organizations supporting our mission! Join at:

Don’t represent an organization? Find us on Facebook ( ) or Follow us on Twitter ( for the latest news in viral hepatitis and opportunities to get involved!

Support the World Hepatitis Alliance’s Thunderclap by July 28 to spread the word:

Encourage your representatives to support the Viral Hepatitis Testing Act! To learn how to contact your Representative in the House regarding HR.3723, or your Senators regarding S.2538, follow this link:

More information about viral hepatitis from CDC at:

Are you at risk? Use this CDC Hepatitis Risk Assessment to find out:

Find a testing location here:

Posted By: Joe Drungil - Friday, July 25, 2014 at 12:02 PM


Making HIV Care Connections with Incarcerated Clients

By Odessa Summers,BS
Senior Prison Medical Case Manager

One in seven people living with HIV will pass through the prison system at some point in their life.* ActionAIDS created the Philadelphia Linkage Program, 23 years ago, to support these specific individuals within this marginalized population. Serving primarily those newly diagnosed, and/or those at the highest risk of becoming lost to care, we provide our Case Management services to those incarcerated within the Philadelphia Prison System (PPS).

Prior to becoming an A2C partner, ActionAIDS was only able to provide short term, (three months post release) case management services to HIV positive individuals within the PPS. Often the transfer from our Philadelphia Linkage Program (PLP) would occur before the individual had the ability to maintain stability. Likewise, higher client caseloads limited our opportunity to provide individualized support to our highest need clients. Lastly accessing vital mental health and addition recovery services proved to be challenging within such a limited time frame.

With AIDS United funding, we created two Care Coach and two Care Outreach positions to provide a more focused and individualized approach to discharge planning. Clients are now able to stay engaged in PLP services for up to two years. We have found the extended case management to better stabilize and prepare them for transfer to general case management services.

Through a collaborative partnership with a local outpatient mental health facility, an inpatient drug and alcohol facility, a housing first program and, a Psychiatrist we are able to expedite linkages to mental health services, drug and alcohol treatment, housing, and mental health medications. This comprehensive approach has allowed for individuals to become immediately linked to care services, and minimizes the opportunity that they will become lost to care.

Our designated AU clients have expressed feeling supported by the consistency received in case management and care outreach engagement. The relationship developed, allows for our Care Coaches and clients to work as a team, towards lowered rates of recidivism, engagement and retention to medical care and an overall improved sense of accomplishment and self-esteem.

So how do we choose?

ActionAIDS and our A2C project partners have developed an Acuity Vulnerability Scale (AVS) to identify those individuals most vulnerable and at risk for becoming lost to care upon release from prison and/or a high likelihood of recidivism. Those identified at the highest end of the scale, are enrolled in our long term intervention.

We personally have enjoyed working with a smaller more concentrated case load. It has allowed me the opportunity to develop a greater partnership with each client to better assess their individual needs and support their personal development and sustained medical retention.

Likewise, Action AIDS has benefited from A2C through the development of this program model and the AVS as well as the relationship with our project partners. Working in concurrence, our Care Coaches and Care Outreach Specialists, are better able to meet the urgent needs of our clients, thereby removing barriers and streamlining their access to the other services through our partnerships. Though there are many measurable outcomes, the pride and sense of accomplishment seen through our client’s success is our greatest outcome, and it is beyond measure.


Search Tags: HIV

Posted By: Robert Banaszak - Tuesday, July 15, 2014 at 12:00 AM


"It’s ‘Bout Time We Had This Meeting!": One Southern Activist’s Reflection on the White House Meeting on HIV in the Southern United States

By Dázon Dixon Diallo, MPH
SisterLove, Inc.
Atlanta, GA

The southern region, a paradox of the most beautiful and the most hideous elements that make up the soul of this nation, is the barometer of the health and wellbeing of the United States, and it is home to nearly half of all people living with HIV in the U.S. The Deep South, with its peculiar mix of social, cultural, political, economical and historical contexts, is way more than a geographic distinction, and bears a grim story of how we are losing the battle against HIV for so many young people, gay and bisexual people, people of color and women. As a Southerner, who has fought the good fight against HIV/ AIDS for nearly 30 years, I am still overwhelmed by how little the rest of the country knows about our HIV epidemic, and I’m furious about the anemic responses to the Southern epidemic by the leadership in our region. As my Nana would say, “It’s about time we had this meetin’!”

Anyone, who has followed the US HIV epidemic with any kind of regularity, knows the South bears the brunt (nearly half) of the staggering 50,000 new HIV infections that happen every year in this country. They would also know that in our region, the southern states and District of Columbia, we have the highest numbers of people living with HIV and AIDS. We are home to more African American/Black, women and rural folks living with HIV and AIDS than the rest of the county. In the South, more people are diagnosed later in their HIV disease and people living with AIDS die faster. It isn’t news that the resistance to implementing the Affordable Care Act in most Southern states fails to protect the basic human rights of poor and middle income families, especially those affected by HIV. We are keenly aware that the South is where our history, our politics, and the deeply complicated levels of stigma and discrimination are the greatest impediments to achieving the optimal goals of the National HIV/AIDS Strategy (NHAS) in the region. Anyone who cares about the health and human rights crisis the HIV epidemic exposes in a health system that is unequal, rapidly changing, and extremely complicated, knows about what’s going on with HIV in the Southern United States. Yes, anyone paying attention would know these things.

Douglas Brooks knows. As part of his introduction as the new Director of the White House Office of National AIDS Policy, Douglas M. Brooks, MSW, concluded a listening tour of several southern communities with an invitational meeting to the White House. The meeting was called specifically to address the Southern HIV epidemic. It was a full day of presentations and meaningful dialogue amongst panelists, as well as from the audience. The information, perspectives, stories, ideas, inquiries and demands that came forth throughout the day highlighted the unique struggles and strategies to battling the not-yet-checked rates of HIV transmission and diagnoses of Stage 3 HIV Disease (AIDS) across 15 states and DC.

The diversity and the array of presenters was nothing short of phenomenal. From the epidemiologists, policy analysts, social and behavioral scientists, the federal partners and the incredible panels of HIV+ leaders and community-based organizations, we heard the data and the details that tell the story of the disturbing trends, as well as the best practices, in the HIV response across the Southern US. Most striking throughout the day was the vocal exhale from so many Southern advocates and providers. Folks whose voices have only fallen on deaf ears among local and regional leadership, were finally being heard and given the platform (and extra time) to share struggles and strategies to turn the corner on HIV in the South. I was proud and honored to feel the collective anger and hope resonating in every question and every challenge expressed by every single speaker.

Douglas Brooks, a son-of-the-south, who is also a black gay man living with HIV, has the social and cultural consciousness that is needed to lead the country toward achieving the aims of the NHAS. Douglas knows that bringing folks to 1600 Pennsylvania Ave helps raise the visibility of the issues and the people who are struggling to win, battle by battle, the fight against HIV and AIDS. I am most grateful to have had the opportunity to witness the history, and I am even more grateful that we have Douglas Brooks and his ONAP team to thank for bringing us together.

I guess, after having been to a few of these White House level meetings, I have learned to have high hopes and low expectations for any concrete commitments or strategies that we could move forward as a result of the meeting. What made this meeting somewhat different is that we have a sense of new national leadership for our regional issues that we did not have before, and now we can build on the strategies and ideas that were put forward. I came away from the meeting with more questions than answers, of course, such as: Based on the trends and patterns for prevention, treatment and care that we have now, what is the Southern epidemic supposed to look like in 5 years (the length of the NHAS); How will the South be prioritized in the next iteration of the NHAS?; What are the capacity issues for scale-up of a greater response in the South?; Where is our PEPFARSUS? But the most imminent question is: “So, now what y’all gon’ do?”

Posted By: Joe Drungil - Friday, July 11, 2014 at 12:00 AM


Team Detroit Creates some HYPE with its Long-Term Project

By Kamran Salari, AIDS United AmeriCorps Team Detroit

When Team Detroit began preparing for our long-term project, we established a primary goal of creating a positive change in the city of Detroit that would last beyond our term of service. It was for this reason that we decided to commit our service to an established organization that would continue to serve the community for years to come. Our hope was that we would provide resources for this organization that they would otherwise not have, and that we would develop a framework for these resources to remain in place after our term of service was complete. Specifically, we served at Teen HYPE, a youth empowerment agency that is involved in HIV testing and care, as well as other youth services. The organization has an after school program where kids can study and receive help with homework. It also holds many youth-run events and fundraisers, including an annual theater play.

While serving at Teen HYPE, we collaborated with staff at the agency to design a project that would help them in an area of need. We planned to establish a framework for volunteer administration and to extend the volunteer pool that Teen HYPE currently had on call for events. In order to accomplish these goals, we wrote volunteer policies, procedures, and job descriptions for specific volunteer tasks that were needed. While Teen HYPE had a website with a volunteer form, many of the completed forms were being overlooked and so we established a staff member at the organization to contact these potential volunteers. We made contact with several organizations and companies in Detroit and established partnerships with Teen HYPE. Several of these organizations agreed to be placed in Tees volunteer pool. We also formed volunteer partnerships with multiple school fraternities at Wayne State University, which we hope will continue with each incoming class. In addition to establishing a volunteer department at Teen HYPE, we also helped out at events and volunteered consistently in their after school program in order to provide short-term help as the volunteer pool was in the process of forming. We volunteered as tutors and mentors for the kids in order to assist the staff.

The fruits of our commitment became evident as the year progressed and we began to see the new volunteer administration in action. For example, Teen HYPE hosted a few lunch presentations for parents about talking to their children about teen issues and was in need of many volunteers beyond what Team Detroit itself could provide. Therefore, we were able to successfully call on the new volunteer pool that we recruited and were able to gather a large group from Chrysler to help out at the events. Moments like these confirmed that we made a difference for Teen HYPE and helped extend their reach to help the Detroit youth communities. While volunteering in the after school programs we were able to see the progress of many of the students as the year progressed. Because we were seeing the same students each week, we were able to track their progress and reinforce concepts that we knew they were having trouble with. As we finish our term of service in AmeriCorps, we know that this volunteer pool that we created at Teen HYPE will be available for them to call on for many years.

Posted By: Robert Banaszak - Thursday, July 10, 2014 at 12:00 AM


The End of the Beginning: Team NOLA Moves Forward

By Helene Kirschke-Schwartz, AIDS United AmeriCorps Team New Orleans

Our year of service is coming to a close in the most hectic way possible - but we wouldn't have it any other way. We always knew Team NOLA would go out with a bang! I'll keep this as short and sweet as possible, because honestly I could go on and on about everything we learned (but you all would get sick of me).  

National HIV/AIDS Testing Day
Technically, National HIV/AIDS Testing Day was Thursday June 27th - but all around the nation, one day wasn't enough. In New Orleans, we had not one but THREE days of free HIV testing. Once again, we teamed up with Walgreens to offer a more convenient place to test. There were nine testing sites across the city (waaaay more than most cities in the US)- it seemed like all the Walgreens in the city wanted in on this event! Each Americorps member was at a different site over the three days- and the results were amazing. In total, Louie, Rebecca, and Jeremy tested 97 people. NINETY-SEVEN PEOPLE. That's not including the other testers and other sites- so you can only imagine how successful this event was. Just wow. 

Long-Term Project (The Whole Sha-bang)
I mentioned our LTP in a previous blog post (which I'm sure everyone read, right?) but it's gotten even better! When thinking about what we wanted to work on the rest of the year, we all agreed that linkage to care was an issue we all cared deeply about. Mostly, we wanted there to be a better and more up-to-date resource for linkage to care. So we got to work!

In the beginning we spent a majority of our time interviewing anyone who would talk to us. Providers, case managers, supervisors... people basically got really sick of us. After we had compiled lots on information about what everyone else wanted to see, it was time to start envisioning what we wanted to see. We decided on building a website. Why a website? Because think of how often we are on our smartphones/ use the internet. It connects us to virtually everything we need. We wanted the website to be mobile-friendly and full of info on providers in the area, prevention tactics, condoms sites, HIV 101...etc. The problem was, none of us were very good with technology. After playing with several ideas, we decided to use a website building template and it worked wonderfully. Check it out for yourself:
 So after many months of planning and too many coffee shops work dates - the website is complete. It is never finished, however, because we hope it will be continuously updated by the future NOLA Americorps teams. But we are very, very proud of the way it turned out- and very, very excited to see how it can help our community. It shocks me how fast this year flew by. It was full of challenges and successes, and more than anything- lots of learning. I think our team would agree that this year has changed us in many ways. We earned some valuable skills, formed lifelong relationships, gave countless female condom demonstrations, ate ate ate (what else do you do in NOLA?), fell in love with the city, & gave back to a community we care deeply about. Personally, I wouldn't have wanted to share this year with any other team. Rebecca and Jeremy get ready to rock climb during a very fun fifth day for the team :)[/caption] Thanks AIDS United for a productive, eye-opening year! We can't wait to see what's next. Love, Team NOLA

Posted By: Robert Banaszak - Tuesday, July 08, 2014 at 12:00 AM


Hobby Lobby Decision Causes Concern Among Public Health Advocates

By Bill McColl
Director of Political Affairs
AIDS United

AIDS United and other public health advocates have been expressing concern about Monday’s Supreme Court decision in the case of Burwell vs. Hobby Lobby. The decision extends rights under the Religious Freedom Restoration Action (RFRA) to closely held corporations by exempting them from complying with the Affordable Care Act’s requirement that insurance policies must include cost-free access to contraceptive care. The ruling, written by Justice Alito, uses the RFRA to extend religious freedom rights to closely held corporations , which account for as many as 90% of all corporations, for the first time.

“AIDS United is especially concerned that the court has directly invited lawsuits to find ways to expand the religious exemption, which could affect HIV/AIDS prevention, treatment and care,” said Ronald Johnson, AIDS United’s Vice President of Public Policy.

The case involved three different companies that objected to paying for certain types of birth control which they regarded as akin to abortion. The majority opinion of the five justices states that since the federal government could pay for contraceptives directly or could require insurers to make such coverage available using the same exemption that has been granted to religiously based non-profit corporations that the imposition on the corporation is not the least restrictive means to fulfill the goal.

The justices additionally stated that the decision was closely limited specifically to contraceptive care for women, noting that the ruling could not be used in racial or other discrimination. In his concurring opinion, Justice Kennedy also seemed to state that in his view discrimination against LGBT people would not be a legitimate use of the ruling.

In dissent, Justice Ginsburg and the other dissenting justices strongly criticized the majority for going well beyond the purpose of the RFRA and for failing to take into account the impact of exempting corporations on their employees. “In a decision of startling breadth, the Court holds that commercial enterprises, including corporations, along with partnerships and sole proprietorships, can opt out of any law (saving only tax laws) they judge incompatible with their sincerely held religious beliefs. Compelling governmental interests in uniform compliance with the law, and disadvantages that religion-based opt outs impose on others, hold no sway, the Court decides, at least when there is a “less restrictive alternative,” she wrote. The dissent clearly notes that the logic of the opinion goes well past the limitations placed on this decision and states that the court has now provided a rationale for corporations to adopt religious beliefs in order to avoid regulation.

“Despite language that the majority uses to limit this case specifically to contraceptives and Justice Kennedy’s more direct concurrence, this is a decision that will likely provide precedence to encourage other, mostly conservative groups, to raise lawsuits over various aspects of the case,” said Johnson. The decision paves the way for a lawsuit to be filed on behalf of non-closely held corporations and that other laws beyond the ACA could be tested.

Johnson also said that AIDS United is concerned, not only about the anti-contraceptive (and therefore anti-comprehensive sexual services) tenor of the court but also about the effects directly on HIV/AIDS services. Conservative Fact Check, for example, has explicitly stated, “If you engage in risky sexual practices and contract HIV, other policy holders shouldn't have to pay for your HIV therapy. And, if you have unprotected sex, others shouldn't have to pay for your birth control.”

Additionally AIDS United is concerned that if Pre-Exposure Prophylaxis (PrEP) became a prevention requirement under the ACA or other law, it could potentially be exempted by the court given that the effort to prevent HIV is notably close to the logic of preventing unwanted pregnancies. Moreover although the court loudly proclaims that the decision will not allow for discrimination (specifically on the basis of race) the logic clearly leads towards an analysis that would allow such discrimination as a deeply held religious belief, particularly towards people who are LGBTQ, people with HIV, and/or other minority groups. If nothing else, such corporations now have a reason to attempt such discrimination, and redefine the limits, as well as keep the courts tied up in litigation. Despite Justice Kennedy’s concurrence, the limits are likely to be tested over and over. HIV care could in some ways be imperiled.

One final concern is that this case is yet one more effort to undermine the ACA by creating more complexity than necessary, and by undermining key components (often in contravention of Congress’s plain intent). We have seen how the Supreme Court, using novel legal reasoning in National Federation of Independent Business v. Sebelius, undercut the logic of state expansion of Medicaid to such a degree that almost half the states are still considering not expanding and keeping millions of people from receiving access to the care that Congress intended for them to have. Unfortunately, this decision has become the hallmark of the Roberts court – a decision that keeps the form and appearance of the law as passed by Congress but places the protections out of reach from all but the most powerful corporations.

Posted By: Joe Drungil - Wednesday, July 02, 2014 at 12:00 AM


HIV in the South: White House Meeting Asks Tough Questions, Explores Viable Solutions

By Carolyn McAllaster
Clinical Professor of Law

Duke Legal Project

Southern HIV/AIDS Strategy Initiative (SASI)
Duke University School of Law

On June 18, 2014, the White House Office of National AIDS Policy, under the leadership of new Director, Douglas M. Brooks, MSW, held its first ever meeting focused on HIV in the Southern United States. Southerners living with HIV, their advocacy partners, and representatives from several federal agencies gathered at the White House Executive Office Building to hear about the regional challenges the South faces in its fight against HIV and to ask questions. Douglas Brooks, who is living with HIV himself and who grew up in Georgia, kicked off the meeting by letting participants know that one of his top priorities is assuring that resources follow the epidemic. The meeting agenda can be found on SASI’s website,

The South has Poorer Health Outcomes: The HIV death rates are striking in the South. Amy Lansky, with the Centers for Disease Control, highlighted the facts that the Southern region has the highest HIV case fatality rates of any US region and the lowest 3-year HIV survival rates. Case fatality rates in many southern states were twice as great as those in other states. Previous research has documented that 8 of the 10 states with the highest HIV case fatality rates in the US were in SASI's targeted 9-state region.

Voices of People Living with HIV: Moderated by Joseph Interrante, CEO of Nashville Cares. One panelist talked about the pervasive stigma that prevents positive people from seeking care. She talked about those who struggle to come out of the HIV closet in the rural South and the layered stigma based on race, sexual orientation and HIV status. Venton Jones, of the National Black Justice Coalition, speaking on the same Voices of People Living with HIV panel, called on policy makers to align resources and research to the populations at risk and highlighted the need to train positive leadership--particularly among young African-American men who have sex with men.

Challenges: Throughout the day, panelists raised the challenges faced by the south in HIV Prevention and Care. A major concern that permeated the questions from the audience is the fear that the failure of most Southern States to expand Medicaid will result in ever increasing health disparities between Medicaid expansion and non-expansion states. Jennifer Kates of the Kaiser Family Foundation illustrated how the southern states that are not expanding Medicaid also have higher than average uninsured rates. Thirty-six percent of PLWHA live in the 11 Southern States that are not expanding Medicaid. Because 51% of these PLWHA have incomes below 100% of the federal poverty level, they are ineligible for subsidies in the insurance marketplace and therefore fall in the "coverage gap" if they live in a non-Medicaid expansion state.

Challenges raised by the more rural and mid-sized city nature of the Southern Epidemic including pervasive stigma, the lack of an adequate network of medical providers and the lack of adequate transportation and housing resources were also raised.

Megan McLemore of Human Rights Watch urged policy makers to develop comprehensive services for injection drug users and other vulnerable populations that include safe non-judgmental spaces, health and harm reduction information, testing for HIV and Hepatitis C and linkage to care services. Injection drug use is a significant contributor to both new HIV infection rates and death rates in several Southern states, especially Louisiana, Florida, and Georgia.

Federal Efforts: Federal policy makers across government were in attendance and listening for the entire session. When it was their turn to speak, they highlighted on-going efforts and commitments to address funding inequities, to initiate innovative programs and to partner with community based organizations throughout the South. The Centers for Disease Control and Prevention is in the midst of five-year plan to re-align funding to align with the number of persons living with HIV/AIDS, for example. The Department of Housing and Urban Development has proposed legislation that would modernize the funding formula for the distribution of Housing Opportunities for Persons with AIDS (HOPWA) funds to also count living HIV/AIDS cases rather than cumulative AIDS cases. The Department of Justice is working on guidance to states that currently criminalize HIV through their HIV-specific criminal laws, laws that exist in many of our Southern States.

Local Level Impact: In a final panel, skillfully moderated by SASI Steering Committee member Linda Rigsby of the Mississippi Center for Justice, state health department officials and representatives of community-based organizations talked about successful state and local strategies--everything from Tennessee's program to use Ryan White Program funds to wrap around marketplace insurance, to Louisiana's use of data alerts to re-engage people in care to the Whitman-Walker Health's successes in retaining people in care.

Moving Forward: The White House Meeting was an energetic and thoughtful exchange among those present and a good first step toward the elimination of the epidemic in the southern region of the United States. Going forward we must continue to insist on increased resources to provide high-quality HIV care and prevention services to people living in non-Medicaid expansion states. We cannot meet the goals of the National HIV/AIDS Strategy until we meet the challenge of making sure that everyone has access to high-quality HIV care and prevention services, no matter where they live.

Resources must be targeted. The Southern epidemic is similar to the US in that it is centered in the urban areas and among young African American MSM (men who have sex with men). The South differs from the rest of the US, however, in that a higher proportion of the epidemic is in rural and mid-sized cities; among African American Women and, in some Southern States, among injecting drug users. These differences must be recognized when initiatives are funded and funds are distributed.

SASI (Southern HIV/AIDS Strategy Initiative) applauds the prompt steps taken by ONAP and Director Douglas Brooks to address the Southern epidemic. The White House Meeting and the Listening Sessions held by ONAP in Jackson, MS; Columbia, SC; and Atlanta, GA are great first steps. Southern PLWHA and their advocates look forward to continuing to work together with ONAP on next steps.

Search Tags: HIV

Posted By: Joe Drungil - Friday, June 27, 2014 at 11:47 AM


A Steel Town Organization Gets Energized at a Southern Convening

By Christina Farmartino, MPH, CPH
Executive Director, The Open Door, Inc.

Dana Davis, PhD, MSW
Board President, The Open Door, Inc.

We, The Open Door, Inc., have the honor and privilege of being funded by AIDS United's Retention in Care Initiative, supported by MAC AIDS Fund.  The Open Door, Inc. is a supportive housing program and an innovative, cost-effective, and replicable approach to engaging and retaining highly marginalized populations in HIV-related care.

We recently attended a convening in Atlanta, Georgia for all grantees of the Access to Care Initiative and are so thankful for the experience! We are passionate about improving the clinical outcomes and quality of life of the people we serve, and were anxious to share our best practices and learn from other providers so that more high-risk people living with HIV can be reached. Going in, we expected to learn more about other grantee programs, the Affordable Care Act, sustainability and how the various pieces fit into the scope of our work. We learned more than we could have ever hoped for and were truly inspired by the work of others. We were amazed by the sincerity in everyone’s’ efforts, from the peers working on the ground to the AIDS United staff, to improving the lives of those living with HIV and to demonstrate new, innovative models of care.

We were ecstatic to hear Dr. Ed Gardner speak about developing the HIV Care Continuum, identifying gaps in care and retention, and demonstrating the concept of engagement in care as prevention. Engagement and retention in care are crucial tools in reducing the overall community viral load. We were so impressed with Linda Scruggs’ perspective and educational talk on peer work that we plan to invite her to our clinical partner’s office for the next women’s empowerment luncheon. We employ a staff of all peers; those living with HIV and/or in recovery, who are directly aligned with the health care and social service systems that clients need. When our clients find out that our staff members have shared their experiences of homelessness, addictions, barriers to HIV-related care, and mental health diagnoses, they understand that their own challenges can be overcome. Our peers work tirelessly and around the clock to support and advocate for our clients. She inspired us to make sure that our peers receive the same support and advocacy. Based on her recommendations, we plan to implement several self-care tools, professional trainings, and exercises for our peer navigators so that they can excel in our Retention in Care program and in their own lives.

We also enjoyed the Strategic Positioning for Community Based Organizations panel. In an unstable funding and political environment, it was extremely worthwhile for us to learn about ways to adapt to new policies, the benefits of mergers or strategic alliances, and sustainability. This talk inspired us to solidify our partnership with another local harm reduction agency and bring them to the table to discuss the potential benefits of a merger or strategic alliance. Overall, this energized us to not only improve our programs, but also to take new, innovative information to local, and state-wide planning groups! We are honored to be a part of an initiative with such innovative and successful programs and amazing, dedicated funders.

Thank you all for an amazing convening in Atlanta and for the ongoing support of the community we serve together! Find out more about our program at!

Posted By: Robert Banaszak - Wednesday, June 18, 2014 at 12:00 AM


AIDSWatch 2014: The Power of Advocacy and Sharing Our Stories

Barb_Cardell_Michael_RajnerBy Michael Emanuel Rajner
Steering Committee Member
United States People Living with HIV Caucus (USPLHIV)

As people living with HIV/AIDS, we intimately know the many barriers preventing us from achieving the possible, an AIDS free generation. Despite the discovery of the HIV virus in the 1980’s, our youth continue to be poorly educated on sexual health at homes and in our public schools. Stigma is real and continues to be a factor that not only prevents people from getting tested, but also from disclosing their HIV-status and being linked and retained in high quality care, treatment and supportive services. Los Angeles Clippers owner Donald Sterling recently reminded the world of the many myths we struggle to overcome to combat HIV/AIDS as a matter of public health and not further diminish the human lives struggle with the virus.

While living in New York City, I was diagnosed HIV positive in early 1996 and recall asking my physician to test me for HIV when I contracted Hepatitis B. My physician at the time replied, “people like you don’t get HIV.” I was so startled by his statement because over the last two years at the time, I lost more than a dozen friends to AIDS, some of whom I dated. At the time, as an insurance broker, I wondered what kind of people he was talking about.

When diagnosed, I initially kept my status a dark secret from my family and only shared it with a few close friends until life began to turn upside down and I needed to take time off of work to adjust to the harsh side effects brought on by HIV-medications.

I didn’t engage in HIV-advocacy until I moved down to South Florida and joined the Campaign to End AIDS in 2005. It was my first time visiting Congress to meet with federal lawmakers and Congressional offices on the needs of people living with HIV/AIDS. At the time, as a community, we struggled to harness the political will and power to once again make HIV/AIDS a national priority.

Since that time, I had the pleasure to begin to participate in AIDSWatch back when I was volunteering at the National Association of People with AIDS (NAPWA) as the national community organizer in 2008 and helped organize the delegation participating from Florida. Each year has its own powerful moments. However, AIDSWatch 2014 for me surpassed many of the past experiences.

I’m often critical of our elected officials for not doing enough, but at the same time, in Congress, there are some amazing champions serving and willing to take on our struggle. Our going to Washington DC to share our story and the experiences of our peers are critical to not restore dignity, compassion and respect for our struggle, but it also provides ideal opportunities for leaders to share our experiences with the rest of Congress. A Senator_Bill_Nelsonmemorable example of this was Congresswoman Kathy Castor, who, after AIDSWatch 2009, chose to include the struggle of people living with HIV/AIDS during a Congressional committee hearing on Reauthorization of the Ryan White CARE Act.

This year I served as the state coordinator for Florida and booked a solid schedule of meetings for advocates to share their stories and educate offices on this year’s priorities. Our time with offices was limited and we collectively as a delegation worked together to connect our personal stories and struggles with each of the AIDSWatch priorities. Each office welcomed us and engaged in great dialogue and encouraged us to keep them informed. My favorite part of AIDSWatch was the teamwork and the opportunities to meet people from other parts of the county who are just as passionate about HIV advocacy.

To hear more about AIDSWatch 2014, watch this YouTube video of Barb Cardell, Vice President of the U.S. People Living with HIV Caucus, speaking about her experience this year.

Posted By: Robert Banaszak - Friday, May 23, 2014 at 12:00 AM


Next Steps for PrEP

dana van gordamer oct 07By Dana Van Gorder
Executive Director
Project Inform

In cities like San Francisco, where I sit, a relentless focus on increasing the number of HIV-positive people taking anti-retroviral medications early in infection has been primarily responsible for improvements in their health outcomes, and reducing HIV incidence. With new HIV cases numbering some 1,200 a year a decade ago, San Francisco now estimates that there will have been some 330 new cases in 2013. As a group of agencies develop a strategy for “Getting to Zero” in San Francisco, the plan’s architects firmly believe that PrEP could have an important effect on incidence, too.

The release this month of revised CDC guidelines for the use of PrEP constitutes a critically important and valuable reinforcement of the evidence that the following groups should consider using PrEP: serodiscordant couples; gay and bisexual men who have had sex without a condom or been diagnosed with an STI in the previous six months; heterosexual men and women who do not regularly use condoms during sex with partners of unknown HIV status; and active injection drug users. The guidelines provide solid advice for medical practitioners about when to offer and how to provide PrEP to those who choose it, as well as strategies for supporting adherence to taking Truvada daily.

Indeed, two issues have been of particular concern to community members, providers and policy makers about PrEP. The first is that patients will not take Truvada daily as required in order to be effective; and the second, that PrEP will further discourage condom use among those who use it. What research, programs and policy are needed to address these issues and advance PrEP as one sound prevention option among others?

Perhaps the most important support for adherence would be the identification of PrEP medications that are long-lasting rather than requiring daily use. In fact, clinical trials are beginning on injectable PrEP agents that could last in the body for up to three months. Additionally, research from current PrEP demonstration projects will begin to help us understand whether adherence is in fact a problem among participants, and what strategies are successful in supporting it. That research will also tell us whether reduced condom use is occurring, and what strategies might address it, as well.

The current level of stigma attached to PrEP in the gay community and among medical providers must be eliminated. PrEP is an evidence-based form of harm reduction for people who are not using condoms consistently or at all during anal or vaginal sex. No one should be shamed for choosing it. Some of the same people who would support a woman’s right to use the form of contraception that best meets her needs oppose PrEP. So, too, people who would argue that condoms should be made available to teenagers because we must face the reality that many are sexually active. These folks need to rethink their position on PrEP in order to be consistent.

Far too few people who could benefit from PrEP are even aware of it. The CDC is launching a new social marketing effort targeting gay and bisexual men that includes discussion of PrEP. It and other funders should assure a multifaceted approach to community education about this intervention, with emphasis on young African-American gay and bisexual men, transwomen, and HIV-negative women in serodiscordant couples who want children. Many medical providers also badly need enlightenment about the CDC’s PrEP guidelines. The CDC has conducted one set of grand rounds on PrEP. It should add greatly to these efforts. HIVMA is conducting education for its members. So, too, should other membership organizations of medical providers, including the AMA, NMA, and GLMA.

While PrEP is being covered by many private insurers and most Medicaid programs, it is critical that advocacy continue not only for coverage, but for ease of access. Some payers require Prior Authorization or Treatment Access Requests (TARs) to initiate PrEP, slowing access or discouraging it altogether. California’s Medi-Cal program recently agreed to eliminate TARs for PrEP, and the three agencies that advocated for this - Project Inform, the San Francisco AIDS Foundation and AIDS Project Los Angeles - believe this will lead to increased uptake.

Finally, while understandable focus has been placed on encouraging HIV-positive people to sign up for newly available health care insurance as a result of the Affordable Care Act, it would be very important to develop programs that support those HIV-negative people who are targeted for PrEP to enroll in coverage in order to access both biomedical and other prevention services.

Posted By: Robert Banaszak - Friday, May 23, 2014 at 12:00 AM

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