Browsing Category: Policy/Advocacy

A Sisterhood of Leaders

by Gina Brown, AIDS United Regional Organizer

On Friday, October 19, 2912, I flew to Atlanta, GA. to participate in SisterLove’s 2020 Leading Women’s Society Awards and Induction ceremonies. 2020 Leading Women’s Society (LWS) is a ten-year strategic effort to engage the leadership of long-term survivors of HIV/AIDS in creating and implementing an agenda that is based on the hindsight and foresight of 2,020 HIV-positive women in 20 countries. 2020 leaders are trained, mentored and compensated to address key barriers and stresses that prevent or inhibit women from actively engaging in managing their sexual and reproductive health, advocating for their human rights, and generating income that secures their independence and economic empowerment.

In 2009, the first inductees were chosen for the 2020 LWS awards. The 2020 Leading Women’s Society now stands proud with 40 dynamic women actively participating in this leadership program with plans to expand the initiative to increase the number of HIV-positive women leaders in North America, Sub-Saharan Africa, South America, and the Caribbean.

The evening started off with the 2020 women being picked up IN STYLE and chauffeured to the event by a limo company!  Greeting us when we arrived was a group of well-dressed men who escorted us one by one onto the red carpet. Inside we were met by a photographer, and we stopped to give quick interviews before moving on to dinner and the awards. We all felt like celebrities! The awards were for the women with 20 or more years. There were a few young women who had been perinatally infected receiving awards, and all I could think was, “they have never known a life without the HIV virus,” I felt so many emotions sitting in that dining room; sadness at the women who were no longer with us, awe at the fact I was in the room, pride at the work the women in that room were doing, humbled by the fact that someone thought I was deserving of this honor, and I felt comfort, because I now have an even larger network of women I can lean on for support. Friday night was open to family, friends and allies but Saturday’s event would be private.

On Saturday we had empowerment sessions from 8:30 am- 4:30 pm. The group discussed everything from Ending the Epidemic and Entrepreneurship, to Professional Behavior and Keeping Your Story Relevant. I videotaped a message that will be displayed on SisterLove’s Facebook page. That night at the induction ceremony, I was called to the front of the room, a purple stole was placed around my neck, and I was also given a 2020 LWS pin. That’s when it hit me, I am now an Inductee of 2020 Leading Women’s Society!

This is an honor bestowed upon HIV-positive women either for either living as a positive woman for 20 years, and/or working in HIV-related community service. I was honored for my community service, both on a local and national level. In a year and a half I’ll be eligible to receive a 20-year award. At the induction ceremony I stood with women from around the United States — strong, committed leaders — who are now a part of a larger Sisterhood. I am both humbled and a little shocked at this great honor. It’s sometimes hard for me to think of  what I’m doing as a great thing. I advocate because as a woman I know that often around HIV issues, we are the most silent and the most invisible people at the table (that’s when we’re invited to the table), I also know that there are many more women who would love to conduct advocacy around HIV/AIDS but due to the stigma associated with HIV, their voices remain silent. These are the woman I speak and fight for.

I am forever grateful for this honor and I’m already thinking of the woman I can nominate next year.

T’is the (Election) Season

Photo of Jessica Terlikowski

by Jessica Terlikowski, AIDS United Director of Regional Organizing

Just 53 days remain until Election Day.

That’s 53 days.

Fifty-three days to help voters understand that everything from HIV prevention to health care to housing to food stamps to LGBT rights to women’s reproductive health and justice is on the line this Election Day.

Fifty-three days to mobilize people who live with and care about HIV/AIDS to get to the polls early and on Election Day.

Fifty-three days to fight against the voter suppression efforts taking place in too many states.

Fifty-three days to bird-dog candidates with questions asking how they will address HIV and the health care crisis in the U.S.

Fifty-three days to light a fire within our community and ensure that every person who lives with, is at risk for, and cares about HIV/AIDS has their voice heard on November 6.

And there are even FEWER days for people to REGISTER to vote, with each state having its own registration deadline – a deadline that is swiftly approaching no matter where we live.

For the last five months, AIDS United has worked to make sure the HIV community has what it needs to get the vote out this election season. We have held webinars and on the ground trainings and strategized with grantees and partner organizations on how to ramp up their involvement in the elections. We collaborated with Florida, North Carolina, South Carolina partners to hold events featuring local and national leaders at the Republican and Democratic conventions to shine a light on what Medicaid expansion means for people living with HIV and how health care access is critical to turning the tide on U.S. HIV epidemic.

Packed rooms at each event listened to esteemed speakers: Dr. Joseph O’Neill, National AIDS Policy during the Bush Administration and President’s Emergency Plan for AIDS Relief (PEPFAR) architect, Jeff Crowley, former director of the White House Office of National AIDS Policy for President Obama and the force behind the development and implementation of the U.S. first National AIDS Strategy, and congressional HIV/AIDS champions Representative Barbara Lee (CA-9)
and Representative Maxine Waters (CA-35). Though they served under the leadership of two different parties, both former AIDS directors agreed that there is much that can and should be agreed upon across the aisle to end HIV in the U.S. and around the world. Both O’Neill and Crowley spoke to the importance of increasing the number of HIV-positive people who can access and stay in care.

Advocates at each event shared how they are using the election as an opportunity to educate voters, candidates, and elected officials about the needs of the HIV/AIDS community. Metro Wellness and Community Centers in Tampa is registering clients. North Carolina AIDS Action Network is asking North Carolinians to pledge to vote.Regional AIDS Interfaith Network is using the AIDS United voter mobilization toolkit to educate voters about the issues at stake. North Carolina Harm Reduction Coalition is training law enforcement and veterans on how to talk with conservative lawmakers about the value of improving sterile syringe access and other harm reduction services. These are just a few examples of grassroots efforts to ensure that people living with and at risk of HIV/AIDS are informed and engaged in the civic process.

AIDS United grantees and partners in Alabama, Georgia, Illinois, Ohio, Pennsylvania, and Virginia are also building and mobilizing their states so that the voices of their HIV/AIDS communities are heard at the polls on November 6.

Over the next 53 days, you can count on AIDS United to continue to move full steam ahead with our efforts to engage, educate, and mobilize. Can we count on you to join us? Email to let us know!

Mobilizing in DC for World Hepatitis Day

by Leilani Attilio, Intern
North Carolina Harm Reduction Coalition

On July 28, 2012, North Carolina  Harm Reduction joined other hepatitis activists on the White House lawn to commemorate World Hepatitis Day with a special focus on Hepatitis B Virus (HBV) and the Hepatitis C Virus (HCV).  Hepatitis has reached epidemic proportions around the world, including the United States, but has largely flown under the radar in communities.   Approximately 805,000 to 1.4 million people1 and 3.2 million people2 are infected with HBV and HCV in the United States, respectively. Unfortunately, people who are infected with HCV, which is the leading cause of liver transplants and liver cancer in the United States, may not have any signs or symptoms for decades, making the spread of the disease more pervasive.  In addition, to give a sense to the seriousness of the disease (if the word “cancer” wasn’t enough), deaths due to HCV have surpassed those from HIV/AIDS3.  In an effort to curtail further transmission and deaths, the White House hosted the fifth World Hepatitis Day on August 2 to bring awareness to the threat of the disease across the country.

Featured panelists and speakers at the White House included Congressman Hank Johnson, who spoke about HCV as a person living with the disease; Dr. Howard Koh, the Assistant Secretary for Health for the U.S. Department of Health and Human Services (HHS); and Dr. John Ward, Director of the Viral Hepatitis Program at the CDC.  The gathering was a platform to roll out strategy plans, recommendations, and tools for surveillance.  For example, the CDC unveiled an online risk assessment tool for hepatitis.  The brief questionnaire asks various questions such as year of birth and nativity.  At the end of the questionnaire, the assessment tool generates a printable summary and recommendations to discuss with your health care provider.

The North Carolina Harm Reduction Coalition is working closely with the North Carolina legislature for the state to adopt recommendations supported by numerous professional medical organizations such as American Medical Association, American Public Health Association, and Institute of Medicine.  These recommendations include syringe decriminalization, which would allow us to conduct syringe exchanges in North Carolina without criminal prosecution.  Injection drug use is a risk factor for HCV due to practices such as sharing needles during injection.   The coalition is looking forward to minimizing the risk of disease for all people and collaborating with other organizations t do this.  We hope you will join the fight.  The first step is to raise awareness. Consider this step checked off.

The North Carolina Harm Reduction Coalition is a grantee of AIDS United’s Southern REACH initiative.


1. Weinbaum CM, Williams I, Mast EE. Recommendations for identification and public health management of person with chronic hepatitis B virus infection: MMWR 57(RR-8):2;2008.

2. Armstrong GL, Wasley A, Simard EP, McQuillan GM, Kuhnert WL, Alter MJ. The prevalence of hepatitis C virus infection in the United States, 1999 through 2002. Ann Intern Med. May 16 2006;144(10):705-714.

3. Ly KN, Xing J, Klevens RM, Jiles RB, Ward JW, Holmberg SD. The increasing burden of mortality from viral hepatitis in the United States between 1999 and 2007. Ann Intern Med. Feb 21 2012;156(4):271-278.

Senator Harkin’s Report on Impact of Sequestration

by Donna Crews, Director of Government Affairs

On Wednesday, July 25, 2012, the Senate Appropriations Committee–Subcommittee on Labor, Health and Human Services, and Education and Related Agencies held a hearing on The Impact of Sequestration on the Nondefense Discretionary (NDD) portfolio (the hearing was webcasted and can be accessed here). At the hearing Senator Harkin released his report, “Under Threat: Sequestration’s Impact on Nondefense Jobs and Services,” (here, prepared by the Senate Labor-HHS subcommittee based on data provided by the departments under its jurisdiction) which provides data by state on the impact of sequestration. From an HIV perspective, both HIV testing and the AIDS Drug Assistance Program (ADAP) are mentioned and reviewed in the report.

As Senator Harkin explains:

So far, we’ve heard a great deal about sequestration’s impact on Pentagon spending. The defense industry has highlighted the potential impacts of across-the-board cut on defense-related jobs and services. Some Members of Congress are now demanding that we exempt the Pentagon from sequestration, either by finding offsets for the defense cuts only, or by making nondefense programs bear the full brunt of the entire $1.2 trillion in cuts.

But sequestration wouldn’t apply only to defense. It would also have destructive impacts on the whole array of Federal activities that promote and protect the middle class in this country – everything from education to job training, medical research, child care, worker safety, food safety, national parks, border security and safe air travel. These essential government services directly touch every family in America, and they will be subject to deep, arbitrary cuts under sequestration.

Soon after the hearing a rally–“Rally to Restore Balance: Protect America’s Families” was held in the Senate Park with approximately 300 people in attendance to support a balanced approach to deficit reduction. Senator Tom Harkin (D-IA) led the event, at which Senator Patty Murray (D-WA), Representative Rosa DeLauro (D-CT), Representative George Miller (D-CA), and Mayor Greg Stanton of Phoenix, AZ spoke on how cuts to NDD would hurt most Americans.

Also speaking at the rally were small business owner Martin Knott and single-working mom Rita Ngabo, both explaining  how the government helps them through job training and child care services. There was a lot of enthusiasm from the speakers and the crowd to protect NDD and the programs that serve all Americans and to find a balanced approach to deficit reduction. The event also drew diverse media outlets, including video coverage from Al Jazeera, PBS, and CNN and reporters from Politico, The Huffington Post, and more.

In subsequent conversations with the Administration, AIDS United staff has learned that the Administration continues to work with Congress to avoid the sequester scheduled for January. The Office of Management and Budget Acting Director Jeffrey Zients believes that in the remaining five months, Congress will find a way to avoid the impending sequester with an alternative plan to address the deficit. However, Mr. Zients issued a Memorandum on July 31 to all agencies outlining measures they should review with the General Counsel in order to determine what programs would be exempted from the sequester. He stated the Administration’s intends to uphold the military personnel exemption, which would increase the burden of funding cuts to the remaining Defense appropriations.

Jeffery Zients stated in a hearing on August 1 before House Armed Services committee (testimony here):

I want to start today by reiterating a point the Administration first made when the President signed the Budget Control Act (BCA) last August: the Joint Committee sequestration, by design, is bad policy, and Congress should pass balanced, bipartisan deficit reduction to avoid it. The intent of including the sequestration in the BCA was to encourage Congress to enact a compromise deficit reduction plan through the threat of mutually disagreeable cuts to both defense and non-defense programs. If allowed to occur, the sequestration would be highly destructive to domestic investments, national security, and core government functions.

In related news, the House, Senate, and Administration agreed on a six-month Continuing Resolution to keep the government funded at the agreed-upon FY2013 level of $1.047 trillion from October 1 until March 2013. The bill will be finalized during August and ready for a September vote, when the Congress returns from recess. This amount is $19 billion higher than the Ryan House passed budget, but is the amount that was agreed to in the BCA of 2011. Finalizing the FY2013 appropriations process even in the short term lessens the amount of work that must be finalized after the election in the lame duck session.

Advocating for an AIDS-Free Generation During AIDS 2012

By Peggy Hughes Weil
Advocacy Coordinator

Western North Carolina AIDS Project

The International AIDS 2012 Conference was an exhaustive and inspiring experience. I am always so humbled by the people I meet who have spent a good part of their lives battling against this epidemic and the stigma that fuels it. It is estimated that there were 24,000 of these dedicated individuals in attendance.  How can we all make the work and the lives of people affected by HIV/AIDS easier? Just follow the AIDS United Do-It-Yourself Guide to Influencing Policy on Capitol Hill!

Leading up to my visit to Washington, D.C., I decided to focus my efforts on my state of North Carolina’s two U.S. senators. They each had recently publicly addressed the AIDS epidemic. Senator Hagan co-hosted the Congressional Roundtable discussing the HIV/AIDS crisis in the South at the urging of our AIDS United public policy team (go team!). Senator Burr wrote an opinion piece on the global efforts to fight AIDS and the need to increase funding domestically for the AIDS Drug Assistance Program. This was suggested at a meeting in Asheville with the Senator. I knew I had a great conversation starter for both. “Thank you and here’s what we need from you now.”

My concern whenever I have these meetings is how to be most effective. As advocates for the HIV/AIDS cause in the South, we will be more successful if we speak with one voice. That’s why I love the AIDS United Do-It-Yourself Guide. It not only gives you a road map to getting in the door, it also lays out a unified message that can be repeated in every state illustrated by your own personal story.

I started by taking the AIDS United pledge to meet with my federal legislators.  Then, I skimmed through the Prezi presentation, which is a multi-media illustration on how to prepare for and meet with your legislators. You can do this at your own pace. There are useful tips for all levels whether this is your first time or you’re an old pro. Most importantly, it provides a timely list of “Asks” with the fact sheets to back them up. All of which are right there for you to download.  Make folders for your legislators with the fact sheets, your card, and information about your organization. You are ready for your meeting!

I contacted each senator’s local office in Asheville, NC a few weeks ahead. I explained that I would be in DC for the IAC and wished to meet with the senators while there. I ended up scheduling appointments with the staff members handling Health Care Policy. This is a perfectly acceptable response. I set the meetings back to back, allowing myself enough time to get from one building to another. I started at 10:30 a.m. and finished by noon. Both meetings were relaxed exchanges of information. The assistants talked about the work that their respective senator have been doing and I stressed the need for them to work together. I talked about how the policies passed in D.C. affect our clients at Western North Carolina AIDS Project. I wrapped up our discussion by asking both senators’  for their support of the three “Asks” plus one “bonus ask,” outlined in the AIDS United legislative visit DIY guide.

1. Protect and Implement the Affordable Care Act & Medicaid Expansion

2. Increase Funding for Domestic HIV/AIDS Programs

3. HIV Policies Based on Science, Not Politics

Bonus!  Join the HIV/AIDS Caucus

While you’re in your meeting, take note of the responses you get and whether they make a note of your requests. In your follow-up thank you letter, reiterate the “Asks” and take advantage of any information they might have shared to strengthen your case.

We are in the midst of an election year. It is now more important than ever to step up. We cannot allow HIV/AIDS policies to be made without the voices of those affected by HIV/AIDS and the people who have worked to improve their lives.  Our elected officials need to hear from us over and over again. If we all speak with one voice, our message will be heard. We can get to an AIDS-free generation.

Rebuilding and Healing

by Maya Wyche, Program Manager
Southern REACH

On May 24, 2012, Women With A Vision (WWAV), a member of our AIDS United and Southern REACH family, fell victim to arson. While the crime is still under investigation, the women who embody and those who look for comfort in and through WWAV, are doing their best to move on through the smoke.  The surrounding community, clients, and peer advocates, as well as national and international partners and supporters have answered their cry for help.  Assistance has varied from heartfelt $1.00 to thousands, such as $5,000 donation from AIDS United, and from the provision of temporary office space within a local church to the potential for donated property.  Although they have come a long way from where they were in the immediate aftermath of the fire, with the slow to start resumption of services, much healing has yet to manifest.

Women with a Vision after the fire logoAs a woman and fellow New Orleanian, it is disheartening to know that some individuals will go to such lengths to disrupt progress and further marginalize woman of color.  I wish I could say that injustices such as this were rare in the South and specifically New Orleans. However, the marginalized and disenfranchised populations, such as the women serves by WWAV who are facing challenges such as addiction, domestic violence, and most notably all ills resulting from poverty, are all too often victimized. This crime could be perceived as a catalyst for a bleak and hopeless situation – from my viewpoint it is an opportunity for change. Crisis calls attention to serious matters and this fire will be fuel for heightened advocacy, which holds the potential for far reaching, long standing systems changes. Let us continue to stand with WWAV and most importantly the women encouraged by and dependent upon their powerful advocacy and nurturing assistance.

Stay updated with the work of WWAV by clicking the links below:

My First Day” by Shaun King

For All that We Have Won, For the Future We Will Make” by Rebecca Gibson

Making Jewelry, Making Change

Story from local news outlet on the WWAV arson