The Importance of AIDSWatch: Reflecting on 2013

March 1, 2013 in Policy/Advocacy, Uncategorized

AW crowd

The following statements from AIDSWatch 2013 participants highlight the continued importance of a federal advocacy event dedicated solely to HIV/AIDS. We hope that you will be inspired by their stories and will join us next year for AIDSWatch 2014!

Lucy Baglin – Illinois Coordinator, AIDS Foundation of Chicago

“As a first year participant of AIDSWatch, I walk away from this event feeling more inspired than ever. The sense of camaraderie among the HIV/AIDS community was enlightening, and being a part of the resilient Illinois team was an honor.

Alongside the legislative issues at hand, Illinois advocates chose to bring their personal stories to legislators, to put a real person behind the policy, and to pack an even greater congressional punch. When advocating to protect HIV services, an advocate and constituent from the small town of Decatur, Illinois, bravely told her U.S. Congressman how Ryan White Programs saved her life. That she would not be sitting in his office right now without them, and that protecting these funds was critical for her and hundreds of thousands of others living with HIV/AIDS. She asked for this congressman’s support, and I don’t doubt that her story will come to mind when these issues are brought to his table.

AIDSWatch also honed my advocacy skills, and those of my Illinois teammates. We had practiced what we would say, and how we would make the ‘ask’, but when meeting legislators the conversation may not always go as planned. However, as a team, and as individuals, our advocacy and delivery got stronger with each meeting. We tailored our messages to be more effective, and knew how and when to back someone up on an issue. We left each meeting feeling increasingly confident, and by the end of the day we felt like HIV/AIDS Rock stars.”

Marsha Martin – Director, Urban Coalition for HIV/AIDS Prevention Services (UCHAPS)

“UCHAPS was pleased to participate in AIDSWatch this year. We had the opportunity to meet with the leadership in the House and the Senate, providing them with the latest prevention and treatment science, community budget ‘ask’ and express concerns about the impact of the sequester. Among those we had a chance to briefly express our views was Senate Majority Leader Harry Reid, fresh off the floor of the Senate. This was a unique opportunity only possible through the masterfully planned and scheduled AIDSWatch 2013. Visiting the Hill with others from across the US, nearly 200 Republican and Democratic offices, reminded the Members and their staff that we care and we will continue to raise our voices to ensure people living with HIV and those who serve them in government and community agencies receive and keep the resources they need.”

Carolyn McAllaster – Director, Southern HIV/AIDS Strategy Initiative

“SASI (Southern HIV/AIDS Strategy Initiative) was well-represented at AIDSWatch 2013! We had delegates from all of the Deep South states except Mississippi. Our advocacy is important in light of the fact that the South has 46% of new HIV diagnosis while representing only 37% of the US population. We held a SASI meeting to talk about how the AIDSWatch policy agenda affects our regions—the refusal of some Southern states to expand Medicaid, the continuing need for Ryan White Program funding and for all the funding streams identified by AIDS United. We added to our legislative agenda the need to change the HOPWA funding formula so that cumulative AIDS cases are no longer in the mix. SASI representatives also met with Dr. Grant Colfax, director of the White House Office of National HIV/AIDS Policy and with Dr. Ron Valdiserri, Office of HIV/AIDS and Infectious Disease Policy, to first thank them for the new CDC Care and Prevention in the United States Demonstration Project (CAPUS) grants focused on the South and to urge the creation of a convening to bring together federal, state, local and community experts to discuss interventions for the HIV crisis in the South.

I was very pleased with the response received from the North Carolina congressional delegation. Senator Kay Hagan met with us personally and promised to champion the Ryan White Program. We also met with Representatives David Price and Mel Watt, and with legislative aides in Senator Richard Burr’s and Representative Butterfield’s office. Everyone we met with understood the importance of continuing Ryan White Program funding, prevention funding, and changing the HOPWA funding formula.

AIDSWatch is always a powerful experience for me. Watching the energy that builds as we get our training, meet with our state colleagues to formulate our visit strategy, and then actually making the visits is impressive. I also love watching first time attendees realize the advocacy power they can have by just telling their stories. Thanks to TAEP and AIDS United for a well-run AIDSWatch and for bringing us together once again to hold our elected representatives accountable!”

Daniel Nugent – Senior Policy Manager, National Minority AIDS Council

“AIDSWatch 2013 provided an extraordinarily well timed opportunity for PLWHA to offer legislators a personal perspective on the human impact of the impending sequester’s effect on domestic HIV/AIDS programs. As the sequester was slated to take effect within days of the Congressional visits, there was an exceptional relevance and immediacy to constituent narratives about the importance of the Ryan White Program, particularly ADAP benefits that many constituents utilize. AIDSWatch 2013 offered a perfectly timed occasion for constituents to advocate not only on behalf of federal programs most important to ending the epidemic, but also provide perspective on the personal impact the sequester will have on PLWHA.

AIDSWatch 2013 married national policy perspective with state and local acumen to paint a complete impact portrait of sequestration for congressional offices. In particular, AIDSWatch participants were able to relay the landscape of care and treatment services on the ground to both Senator McCaskill and Blunt’s office, providing unique local perspective on the impact of national cuts to HIV/AIDS programs throughout Missouri and what those cuts would look like to programs in centers such as St. Louis. The local perspective resonated with congressional offices.”

Carole Treston – Policy and Advocacy Consultant, Association of Nurses in AIDS Care

“The Association of Nurses in AIDS Care (ANAC) was proud to participate in AIDSWatch 2013. Six ANAC members participated in visits to ten Senate and six House offices and attended the Congressional briefing. We joined with other advocates and consumers and at each visit we presented the perspective of nurses on key issues in HIV prevention, care and research. We educated Hill staff on the remarkable advances in treatment and prevention for our patients as a result of NIH funded research. We described how we are on the verge of achieving an AIDS-free generation and making a dent in new HIV infections through Treatment as Prevention and how critical adequate funding is to implement it on a large scale. We gave first person testimony about the critical role that services such as case-management, transportation assistance, medication education, peer linkages and other Ryan White Program funded services play in getting our patients into our care sites and staying in care. We stressed science and evidence over politics in prevention as we urged for the lifting of the ban on federal funding of syringe exchange programs and described the barriers to testing and linkage and retention in care that HIV criminalization presents. We advocated for full implementation of the Affordable Care Act (ACA) and described the current role of nurses, nurse managed programs and AETCs now and in the expansion of care that we expect will occur with the ACA. It was a great honor to represent just a tiny bit of the
commitment of the thousands of nurses in HIV care and we already are planning for more involvement and representation in AIDSWatch 2014!

Sharing Our Passion for Helping HIV-Positive People Get into Care

February 20, 2013 in Access2Care

Roman-AFCby Roman Buenrostro, Director of Special Projects
AIDS Foundation of Chicago

I recently had the pleasure of participating in the third evaluation convening meeting for AIDS United access to care grantees in Baltimore, and invariably colleagues asked me upon my return how the meeting went and what did I learn from the meeting. After this last meeting I had an epiphany for how I should describe these convening meetings in the future- inspirational fellowship. Now I am the last person to describe things with religious language, and anyone who knows me can testify to that! But in many regards these meetings are just like going to church or bible study for me. It is a group of like-minded people sharing their thoughts, ideas, creativity and passions in something we are all very committed to: getting and keeping people with HIV in care.

Sometimes it seems like I become so focused on our access to care projects here in Chicago, the challenges of identifying people lost to care, addressing issues of HIV stigma and homophobia, that it seems we can never accomplish all that needs to be done and our efforts are just a drop in the bucket. Then I go to these convening meetings and I am reminded how many brothers and sisters in ending HIV there are across the country. I see how other projects have evolved that are just like ours across the country. For example, our Connect2Care project has begun to experience challenges in reaching out and engaging medical providers to partner in re-engaging people into care. After this meeting I feel renewed to step up and lead new efforts to engage medical providers and offer them my “fellowship.” I want to really begin to acknowledge that to work together effectively we must recognize that we share the same goals, we want to connect people to care to improve their health, the health of their families, and the health of our communities.

Roman-Nic-Vignetta

l to r: Roman Buenrostro, AFC; Nicholas Alvarado; Bay Area Network for Positive Health, Vignetta Charles, AIDS United at the A2C Evaluators Convening.

And this work can’t be done alone- it requires our IN-CARE Project peers to laugh, listen, and educate folks on the importance of primary care, it requires our Connect2Care Coordinators to entice and cajole primary care providers to collaborate on linking people who need care to that care.

Our access to care work requires relationships to be built and maintained. I, and the organization I work for have always valued relationship building, both with our clients and our partners. AU’s access to care grants have been in instrumental in giving us the resources to focus on relationships to get people into care. Now more than ever it is the key in helping us move closer towards a generation where HIV is managed and controlled, and no more new infections occur.

AIDS Foundation of Chicago (AFC) is a grantee of AIDS United’s Access to Care Initiative.

The State of the Union – From the Inside

February 15, 2013 in Policy/Advocacy

melwhitehouse

By Melissa Donze, Zamora Fellow, AIDS United

The first time I went to the White House, I was 11 years old. I was on a family vacation in D.C., and the only thing I can remember is standing outside the North Portico after our tour and my dad taking pictures of my brother and me, which he has since framed and kept in his living room. The second time I went to the White House was just this past week, when I was invited to watch the State of the Union. Not everyone can say they’ve been to the White House, let alone twice. But being invited to the White House to watch the State of the Union? Now that’s something to write about.

Last week, I stumbled upon a tweet inviting individuals who actively engage with the White House through social media to apply for a spot at the 2013 State of the Union White House Social, an opportunity to watch an interactive, live-stream of the State of the Union and discuss the address afterwards with White House officials. I often use social media, namely Facebook and Twitter, to share news related to HIV and other issues that are important to me. While I didn’t think I would actually be selected, I applied thinking it was a great opportunity to engage with others who advocate through social media. To my great surprise, I received an email from the White House congratulating me on being selected to attend the State of the Union White House Social!

February 12, the night of the State of the Union address, finally rolled around, and I could barely contain my excitement! I arrived at the White House in time to see President Obama’s motorcade leave for the Capitol, and the 100 of us who were selected to attend made our way into the South Court Auditorium of the Eisenhower Executive Office Building. Everyone in the room, including myself, was armed with computers, iPads and iPhones, ready to share the President’s address with friends and followers on our various social media venues. The live stream we were viewing was an interactive version of the State of the Union, one that included graphs, charts, pictures and other visuals that enhanced whatever it was that President Obama was speaking about at the time. These visuals helped underscore not only the legitimacy of his address, but also provided us with a well-rounded and comprehensive view of his proposals.

I was pleased that President Obama continued to push a progressive agenda in his State of the Union that supported much of the rhetoric of his inaugural address. His approach to the impending sequester and deficit reduction is a balanced one that must include both spending cuts as well as further revenue increases, which will hopefully ensure that non-defense discretionary programs do not carry the majority of the burden of deficit reduction. The most exciting moment of his address for me was his mention of “realizing the promise of an AIDS-free generation, which is within our reach.” I was pleased to know that this is a priority for his Administration, and I believe that if we commit the resources required by the National HIV/AIDS Strategy and the recent PEPFAR Blueprint, we can achieve an AIDS-free generation, both domestically and internationally.

Following the address was a Q&A session with White House officials. The panel took questions from those at the event as well as questions submitted online through Twitter, Google+ and Facebook, and it made for a really comprehensive and substantive end to the evening. The event was an incredible opportunity that allowed me to share valuable information with friends and followers on social media, and it really helped me realize the power that social media can and will play in the future of the HIV epidemic, especially when it comes to youth engagement.

While I can’t remember much from my first visit to the White House, I’m sure I’ll remember every moment of this incredible visit…and hopefully it won’t be my last!

You can watch the same interactive version of the State of the Union by clicking here.

Caressa Cameron-Jackson Speaks on National Black HIV/AIDS Awareness Day Panel Discussion at Hampton University

February 8, 2013 in Lady Bloggahs

NatashaBy Natasha Abrams, Senior Sports Management Major at Hampton University
Journalist, Gamma Iota Chapter of Delta Sigma Theta Sorority, Inc.

On Thursday February 7, 2013 the Gamma Iota Chapter of Delta Sigma Theta Sorority (DST) Inc. helped support the fight against HIV/AIDS during a panel discussion featuring Miss America 2010, Mrs. Caressa Cameron-Jackson. Mrs. Cameron-Jackson shared her story of how HIV/AIDS had such a large impact on her life at such a young age.

When she was just a little girl, her uncle was diagnosed with HIV. “He was an African American gay man,” Caressa said. “He eventually stopped taking his medicine and died”. Her uncle’s death encouraged her to want to educate the world about HIV/AIDS because her uncle’s death could have been prevented if others had taken the time to increase their knowledge of the infection. “He [Caressa’s uncle] chose to stop taking his medicine because of the stigma in my family. No one wanted to talk about the fact that my uncle was gay with AIDS nor did they want to do anything to help. He already felt defeated before he could start his fight”.

Mrs. Cameron-Jackson is the Mid-Atlantic Regional Organizer for AIDS United and loves what she does. The Hampton community welcomed her with open arms and was greatly impacted by her knowledge. The Gamma Iota Chapter of DST would like to thank Mrs. Cameron-Jackson and her team for helping to make National Black HIV/AIDS Awareness Day a success.

Since National Black AIDS Awareness Day fell during Delta Week at Hampton University, we wanted to provide information about HIV/AIDS to the student population and the broader Hampton community to educate them about the impact HIV is having on the African American community. We felt it was important to remind students that you must know your status and practice safer sex. We also wanted to provide an opportunity to get an HIV test onsite.

Professor Carrion (Pharmacy Department) spoke candidly HIV about HIV medications and the real life impact HIV medication has on his clients. He also shared the impact that HIV has had on his family. His aunt was HIV positive and experienced stigma in the family as well as in the community.

Sandra Baker decided to mark National Black AIDS Awareness Day by speaking publically for the first time about her HIV status. Positive for the past eight years, Ms. Baker wanted the Hampton community to know the importance of knowing their HIV status so that transmission can be prevented. She explained that you can still have relationships as an HIV positive person, but you must care for yourself and your partners. She explained she is married, has four children and all of them remain HIV negative.

Aware Enough

February 6, 2013 in HIV/AIDS Awareness Days


Diedraby Diedra J. Levi, CEO, Living Affected Corporation

As a Black person, I can tell you that an awareness day is rhetorical because we are aware. We simply haven’t had enough. We haven’t had enough of dying when we don’t have to. We haven’t had enough funerals. We haven’t had enough of seeing someone darken and waste away. We are aware. We are aware that Black gay men are more at risk. We are aware that Black gay men are more likely to be infected. We are aware that Black gay men are more likely to not get the proper treatment and die from this disease. We are aware that Black women are 20 times more likely to become infected with HIV than White women. We simply haven’t had enough.

I am aware that the right person hasn’t been infected and stood up to say that I have HIV. I am aware that the conspiracy theories are still rampant in my community and most think that Magic Johnson was able to afford a cure. I am aware that there is no cure. I am aware and can call names of people who eat a nutritious diet and ingest special herbal treatments to keep the effects of HIV at bay. I’m aware that that’s not enough. I’m aware that the treatment now can bring you back from the brink of death once you have had enough. But we haven’t had enough.

In Arkansas, we still have a death a month of some young gay male less than 30 years of age from a disease they didn’t have to die from so young. Are people aware that poverty and homelessness are more than likely a part of the journey for this young man? Are you aware that if you go up under the bridges of Little Rock that you would find that about 40% of these homeless people are gay? Are we aware that parents beg for a mental diagnosis from a psychiatrist instead of accepting that their child is simply gay? Are we aware that one of the most popular ministers here will dunk a child under the cold waters of baptism to try to wash
away that homosexual demon (that the child might not be aware of) out of them? Yes, I believe we are aware but I don’t believe we have had enough.

I’m aware that if the Atlanta housewife, NeNe, said to take your medication if you have HIV, then we might get some results. I believe if, while on American Idol, Nicki Minaj says to take your medication for your HIV, we might get some results. I even believe that if, from the pulpit, preachers preached love, we might have some results. But they don’t which translates to we haven’t had enough.
When it comes to Black people, I know that when we have had enough, we move and shake mountains. Rosa Parks had had enough. Harriet Tubman had had enough. Colin Powell had had enough. When Rodney King was beaten, we had had enough. But for Black folks and dying from or baring half the burden of HIV/AIDS we haven’t had enough. There is no fight, no riot, and no march. There is the perpetuation of shame, guilt and isolation.

I would like to see Legislators fighting for a chance to speak at a National Black HIV Awareness Day. Each representative will want to tell about how they fought for housing, education, food, treatment and employment that the lack thereof was a trajectory to HIV/AIDS. Senators will tell their stories of how they fought for HIV decriminalization, syringe exchanges, HIV prevention, vaccine and cure funding. National Black HIV Awareness Day should not be a continuation of a festival of free t-shirts and wristbands which is usually attended by those that are well aware. We need to be passionate enough because we have had enough and go door to door spreading the word that the end of AIDS is near. When we find that the masses of those most impacted are aware and they have had enough; maybe National Black HIV Awareness Day will be a celebration of change.
logo - Living Affected Corp

 

Living Affected Corporation is a grantee of AIDS United’s Southern REACH initiative

Witness to History (Again): Inauguration 2013

January 25, 2013 in Elections 2012, Policy/Advocacy, Uncategorized

head shot, Melissa

By Melissa Donze, Zamora Fellow, AIDS United

Six hours of freezing cold temperatures; six hours of standing in the same place, watching the sun rise over the Capitol; six hours of waiting to hear a single person speak; and it was worth every single second.

Four years ago, I drove to Washington, D.C., with some of my college friends so I could be witness to the historic inauguration of the man who renewed my hope in the collective power of individuals. Being a part of President Obama’s first inauguration is one of my most treasured memories; for the first time in my life, I was part of something bigger than myself, something that we have only begun to understand within the context of history.

Four years later, I found myself in D.C. again, this time as a resident and an advocate for people living with HIV. When the opportunity to attend President Obama’s second inauguration presented itself, I couldn’t say no; I wanted to be a part of history again. This time, the crowd looked different. It was smaller, but hopeful; enthusiastic, but resilient. The past four years had changed all of us in one way or another. I was older, and maybe a little bit wiser. I went abroad and returned home with an altered perspective of the world every time. I graduated from college and got my first taste of the “real world.”

I wasn’t the only one who had changed. President Obama was noticeably greyer this time. Realistic expectations and principles had replaced the unbridled idealism of four years ago. The most noticeable changes, however, were found in his inaugural address. While his first inaugural address was good, it was full of lofty messages and metaphorical abstractions that could have been applied to any time period. This second address, however, was grounded in our time and the struggles we face today. It was guided by the principles of our founding documents and still managed to be forward-moving and progressive. Its premise of equality, the most evident of truths, allowed him to address fair wages for women, gay marriage, voter suppression, immigration, and second amendment controversies. Although he did not directly mention HIV, his address spoke to many of the issues people living with HIV face.

As I stood there and listened to President Obama say the words “Stonewall” and “Newtown,” among many others, my eyes filled with tears. I am so proud that the President will be leading us down the path to ensuring life, liberty and the pursuit of happiness for all Americans. It truly feels to me like we are now on the path to equality.