Now. Then. Now.

June 28, 2013 in m2mPower, Policy/Advocacy

AIDSWatch-KhalidNaji-Allah -75-3By Rob Banaszak, Director of Communications, AIDS United

“This is really happening…”

That’s what I was thinking as I stood on the sunsoaked steps of the Supreme Court on June 26, as SCOTUS’ ruling striking down DOMA came down. The air in front of the Court was thick with hope, and I was in awe of the hundreds of people of all ages, genders, ethnicities and sexual orientations (one of my companions was a straight friend), who were utterly committed to standing in mind-numbing, body-drenching heat to be a part of history. I marveled at everyone who was furiously scouring the SCOTUS Blog on their smartphones (dripping with sweat as they did so), or who were eavesdropping on others reading out loud from the blog for news of the decision. I cheered with the crowd when the ruling came out. I must confess, however, that I was a little numb.

Of course I am overjoyed that the Supremes got it right this time! I am thrilled that LGBTQ people are one step closer to being treated as equal citizens under the law. I am excited that the term “gay marriage” is one step closer to being obsolete, as our society begins to recognize “marriage” as the union of two people — regardless of gender and/or sexual orientation — who love each other and want to get married.

But I didn’t cry tears of joy as many of my friends – both gay and straight – did. I felt more relief than anything.

“This is really happening…”

AU at SCOTUS-webYou see that’s also what I was thinking in 1996 when DOMA was created. I worked for the national office of Parents, Families and Friends of Lesbians and Gays (PFLAG), during a time when lawsuit in Hawaii, Baehr v. Miike, in which three same-sex couples argued that Hawaii’s prohibition of same-sex marriage violated the state constitution, had caused cultural firestorm and was the impetus for dozens of statutes and constitutional amendments banning same-sex unions at the state level. Baehr v. Miike, and the avalanche of state anti-marriage legislation that followed also led to the enactment of the federal Defense of Marriage Act (DOMA). At the Congressional hearings held before DOMA was passed, I sat in on the testimony of one of our PFLAG members — a mom from Oklahoma, who simply told her truth. She talked about how precious her lesbian daughter was. She spoke of how she wanted her daughter to be able to marry the person she loved. She proclaimed that she wanted her daughter to have the same rights that her straight children had.

During that hearing, she was vilified by Members of Congress who were pro-DOMA and clearly anti-gay. She was treated as if there were something wrong with her because she supported her daughter. She was addressed by these elected officials with shocking disrespect. I was appalled and sickened. Soon after, DOMA was enacted.

“This is really happening…”

I had moved to DC about two years before experiencing my DOMA disillusionment. Just prior to my move, my husband, who had AIDS, passed away. While we had gotten “married” in the mass wedding demonstration at 1993’s March on Washington, we never would have imagined that we could have gotten legally married in our lifetimes. When his health began a rapid decline, however, I was always allowed to be with him during treatments, in his hospital room, and at his side as he died – as any married spouse would be. When the fight against DOMA began and the gay community compiled stories of couples in long-term relationships that had experienced awful discrimination within that relationship, I knew I had been blessed.

I never really believed that DOMA would be overturned, despite the groundswell of support for same sex marriage that we have been seeing over the last several years. And yet, on June 26, 2013, I was standing in the blazing sun with my community — many of whom were only toddlers when DOMA was enacted – as this cynical and hate-driven legislation came to its end.

Since that day my relief has turned to a quiet elation, along with a cautious optimism about where we are headed and how fast we are getting there. Sooner than I thought it would happen, marriage will be marriage and love will be love. Well, actually, love IS love.

This is really happening.

After 505: An Interview with Steve Wakefield

June 21, 2013 in Policy/Advocacy, Uncategorized

By: Charles Stephens, Regional Organizer, AIDS United

This past April, the National Institute of Allergy and Infectious Diseases (NIAID) announced it would stop providing injections to participants enrolled in the HVTN (HIV Vaccine Trials Network) 505 study. HVTN 505 was aimed at studying the effectiveness of an HIV vaccine regimen in preventing HIV infection in trial participants or reducing the viral load among those that become infected with HIV.

The Data and Safety Monitoring Board (DSMB), the group of experts who examine the safety of patients and treatment efficacy during the course of a clinical trial, found that the vaccine regimen being studied did not prevent HIV nor did it reduce the viral load of participants that had been infected.

Over the past few years there has been considerable optimism and hope for the development of effective biomedical HIV prevention options, so the initial news was sobering. This is even more true given that nearly a year ago, the FDA approved Truvada for use as pre-exposure prophylaxis (PrEP), catapulting us into a new era of HIV prevention.

However, it’s important to keep things in perspective. The news about HVTN 505, though in some ways a setback, is an excellent learning opportunity and
provides us with valuable information about developing an HIV vaccine that will actually be effective.

To provide greater context around these issues, I interviewed Steve Wakefield of HVTN, a widely respected HIV prevention research advocate and thought-leader in the field.

What are your general reactions to the news about HVTN 505?

As an HIV vaccine advocate and believer in HIV vaccines as the way to end this epidemic, I am disappointed. It is very challenging that a strategy that seemed hopeful and asked people to invest did not result in a clear path forward. We have learned an incredible amount through in-depth analysis of tissue and blood from previous trials. This study was designed to give us an answer sooner and it did– I would have preferred a different answer. The good news is that people participating in the study and telling the truth about sexual behaviors can open us up to a world of information on next generation HIV vaccines. To date, scientists have learned information from clinical trial data that provides accurate guides to future HIV vaccine studies. Sometimes one study can tell us the way forward on several fronts.

What are your thoughts about the future of HIV Vaccine research for gay men/MSM?

It is essential to find a vaccine that works for those most impacted which may mean those with the most new infections annually. It is equally important to find a vaccine that works for all populations. Gay men are the key to understanding how this vaccine and future vaccines will be used along with new information about HIV protection for those who are sexually active. Gay men will generate knowledge about PrEP, condom use, home test kits, and partner selection by serostatus. How are these new tools used? Do MSM who participated in HIV vaccine research have different responses than those who did not? Do HIV vaccines have a different effect on anal tissue than in the blood stream? These and many more questions are key to understanding how to make an effective HIV vaccine.

Do you have any recommendations for HIV prevention research advocates as it relates to moving the HIV vaccine research agenda forward?

Prevention advocates should not get caught in the “where do we spend our money?” discussion, but should instead note for the public that there is not enough money being spent. We currently spend less on HIV vaccine research than it costs to make four Hollywood movies. I look at the new movie releases across the summer and think: which one or two could I live without in order to stop HIV’s devastation, in order to find a better condom or an HIV vaccine?


What are some critical lessons learned about HIV prevention research advocacy broadly that we can apply to our current moment as it relates to the HVTN 505?

HIV research has taken us from a somewhat toxic, one-drug treatment strategy to smart pills where you can get three or four drugs in one daily dose. Today’s drugs are as different from early pills as our smart phones are from the rotary dial phones that we went home to answer. We are learning more and more about public health strategies to protect entire communities, partners and individuals who may not find answers in behavior change. Research is the way to end the devastating impact of HIV.


What are the top three issues/areas HIV prevention research advocates should prioritize in 2014? What should our advocacy agenda look like?

From my perspective, we should focus on ensuring access to treatment and prevention for all who need it. In the U.S., that means a watchdog / whistle blower attitude to policies.

Secondly, we should turn our attention to campaigns that help individuals understand how to choose strategies that protect them from HIV infection, including reducing one’s number of partners and entering covenant agreements on safe, proper use of biomedical tools.

The third priority should be to ensure that we don’t wait for the government to save our lives. HIV activism has worked best when a couple people agreed to move forward to save the lives of those around them – not when we complained about government spending.

House and Senate Consider Respective Farm Bills: Please Oppose Harmful Cuts to SNAP

May 24, 2013 in Policy/Advocacy, Uncategorized

HIV and Food: What You Need to Know about SNAP!

HIV disproportionately impacts low-income individuals who may also be receiving support through the Supplemental Nutrition Assistance Program (SNAP), formerly known as food stamps. Congress is currently considering two versions of the Farm Bill, which authorizes funding for SNAP. However, both the House and Senate versions of the bill make dramatic cuts to the program, which is critical to low-income households. Proper nutrition is even more important for people living with HIV; God’s Love We Deliver, an organization that provides nutritious, individually-tailored meals to people who are too sick to shop or cook for themselves – and an AIDS United Public Policy Committee member and grantee through the New York City AIDS Fund – has highlighted the importance of proper nutrition for people living with HIV . A well-balanced diet helps people living with HIV maintain a healthy weight, strengthen their immune systems, and prevent infection. It also helps to build and maintain muscle, allowing medications to work better and enabling individuals to handle the side effects of medications.

Our friends at Food Research and Action Center (FRAC) have highlighted the cuts to SNAP that could occur. AIDS United strongly opposes these proposed cuts and the damaging effects they would have on low-income individuals, especially those living with HIV. Read the following blog to learn more!

House and Senate Consider Respective Farm Bills: Please Oppose Harmful Cuts to SNAP

By Jim Weill, President, Food Research and Action Center (FRAC)

jim weillThe Farm Bill is a comprehensive piece of legislation that guides and authorizes funding for most federal farm and food policies, including the Supplemental Nutrition Assistance Program (SNAP, formerly food stamps). Every five years, Congress takes the Farm Bill through the reauthorization process; the last Farm Bill was passed in 2008.

Currently, both the House and Senate are considering their versions of the Farm Bill, and both have large cuts to SNAP, despite broad support for this program. Seven in 10 voters say that cutting food stamp funding is the wrong way to reduce government spending.

These cuts would reduce already scanty monthly benefits for many SNAP recipients and kick many others out of the program altogether. FRAC – along with a vast coalition of national and state anti-hunger organizations, unions, religious groups, and more – has been vigorously opposing such cuts, noting the harm they will do to the most vulnerable in our society.

First, the Senate bill, S. 954, which was passed by the Senate Agriculture Committee and is (as of press time) being debated on the Senate floor, includes a cut of $4.1 billion over 10 years to SNAP. This cut limits a state option for coordination of SNAP with the Low-Income Home Energy Assistance Program (LIHEAP). Through LIHEAP, states provide energy assistance to low-income households throughout their state, alleviating some of the untenable “heat or eat” choices that households face. The Senate cut could result in 500,000 households losing an average $90 per month in SNAP benefits, while increasing the paperwork burden of states.

The House bill, H.R. 1947, was passed through the Agriculture Committee with far harsher SNAP cuts of over $20 billion over 10 years. The House bill slashes more deeply the cut to the “Heat and Eat” LIHEAP/SNAP provisions and also restricts the state “Categorical Eligibility” (Cat-El) option, which helps states get nutrition assistance to low-income people more efficiently. The Cat-El option allows states to increase the asset limit or eliminate the asset test for families who receive a cash (or non-cash means-tested) benefit. Restricting this option would have a harsh impact on seniors and people with disabilities who have high medical bills. Potential impacts of proposed cuts include: $90 less in benefits each month for 850,000 households, which include 1.7 million people in 15 states (mostly cold weather states) using the “Heat and Eat” provision; eliminating SNAP benefits altogether for 1.8 million people in over 40 states; and up to 210,000 low-income children losing access to free school meals through the Cat El restriction. The House Committee bill also eliminates SNAP incentive payments to states for excellent and improved administrative performance, and cuts funding for SNAP’s nutrition education program (SNAP-Ed). The full House is expected to take up its Farm Bill before the July 4th recess.

The cuts to SNAP in both Farm Bills would dig deep into the refrigerators of low-income Americans, coming on top of another already-enacted cut to benefit levels that’s coming in November. In November, temporary increases approved in the 2009 economic recovery act will expire for 47 million people – this will mean about $25 less in monthly food stamps for a family of four.

Take Action: Contact your Members of Congress and urge them to oppose both the Senate and House SNAP cuts. Go to Food Research and Action Center’s (FRAC) Legislative Action Center for more on the latest on actions you can take to protect SNAP and more information on the proposed cuts.

Jim Weill has been President of the Food Research and Action Center (FRAC) since February 1998. Jim has devoted his entire professional career to reducing hunger and poverty, protecting the legal rights of children and poor people, and expanding economic security, income and nutrition support programs and health insurance coverage.

The Food Research and Action Center (FRAC) is the leading national nonprofit organization working to improve public policies and public-private partnerships to eradicate hunger and undernutrition in the United States. FRAC works with hundreds of national, state and local nonprofit organizations, public agencies, corporations and labor organizations to address hunger, food insecurity, and their root cause, poverty.

What’s In YOUR HIV Prevention Toolbox?

May 22, 2013 in m2mPower

toolbox-header-blog

Attention U.S. (incl. the territories)-based organizations serving lesbian, gay, bisexual, transgender and queer/questioning people!

Did you know that gay, bisexual, and other men who have sex with men (MSM) are more severely affected by HIV than any other group in the United States?

What can you do to help? 

You can help spread the word about HIV prevention to the young gay and bisexual men that your organizations serve —  and have fun doing it!  Participate in AIDS United’s Facebook video contest, “What’s in YOUR HIV Prevention Toolbox?”  You could win up to $4000!

Work with your U.S. (incl.the territories)-based LGBTQ organization’s staff and/or volunteers to produce a one-minute video that promotes HIV prevention tools and fits the theme, “What’s in your HIV Prevention Toolbox?”  Entry submissions will be accepted via AIDS United’s Facebook page  June 1 – 30, 2013.  The videos from the three organizations with the greatest number of votes at 11:59 p.m. on June 30, 2013 will  receive up to $4000 as an incentive to begin addressing HIV in their regular work.

The “What’s in Your HIV Prevention Toolbox?” video contest is part of our m2MPower initiative, which seeks to halt the rising rates of HIV among gay and bisexual men and other men who have sex with men.  The official contest rules and regulations are below, and if you have questions you can email HIVtoolbox@aidsunited.org

What are you waiting for?  Start producing your video now!

Rules and Regulations:

  • Must be 18+ to participate and an authorized representative of a LGBTQ organization.
  • Must submit content via Woobox App and agree to the rules and regulations of the contest.
  • All content must conform to Facebook rules, regulations, and guidelines.
  • The contest will run from June 1 through June 30.
  • Winning organizations will be determined by the number of votes within the Woobox App at 11:59 p.m. on June 30, 2013 : 1st place $4,000, 2nd place $3000, 3rd place $2000
  • Winning organizations will be contacted via the provided email address in their Woobox contest application.
  • Videos are encouraged to be longer than 1 minute.
  • Entrants must have the rights to distribute and authorize the distribution of any and all content contained within their submissions.
  • By entering the contest, you agree to grant AIDS United the right to promote, share, and redistribute your entry as it sees fit.
  • AIDS United is not liable or responsible for the accuracy, quality, and legality of the content submitted.
  • This contest is in no way sponsored, endorsed, administered by, or associated with Facebook.

How to Enter:

  1. Read the rules and regulations for the contest above
  2. Visit the CDC’s website for resources on HIV prevention at: http://www.cdc.gov/hiv/topics/basic/index.htm
  3. Produce a video, maximum of 1 minute in length, that promotes HIV prevention tools reaching gay and bisexual and other men who have sex with men and fits the theme, “What’s in your HIV prevention toolbox?”
  4. Ensure that your organization has the rights to distribute and authorize the distribution of any and all content contained within your submission and ensure that the content of your video adheres to Facebook’s rules and guidelines.
  5. Submit your video via the Woobox App on the AIDS United Facebook page (available from June 1 to June 30), agreeing to the rules and regulations of the contest and providing your contact information.
  6. Share the link to your video with your friends and fans, encouraging them to vote for the video that best explains HIV prevention tools or that most persuasively encourages use of one’s HIV prevention toolbox.

Sample messages for your video:

•    You can prevent the spread of HIV.
•    Knowing your HIV status helps you take control of your health
•    Taking an HIV test can be simple and easy.
•    If you are negative, use a condom every time.
•    If you are positive and on treatment, you reduce the chance of transmitting HIV by up to 96%
•    Alcohol and drugs cloud judgment and can lead to risky behavior

Guest Blog: Finding a Way Forward

May 10, 2013 in Policy/Advocacy

Guest-blogger-Matthew-Rose-web

by Matthew Rose, AIDS Advocate

It’s never easy to hear that a major scientific endeavor did not produce the results it was hoping to produce. Last week the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health, announced it would stop administering injections in its HVTN 505 clinical trial of an investigational HIV vaccine regimen. An independent data and safety monitoring board (DSMB) found during a scheduled interim review that the vaccine being tested did not prevent HIV infection, nor did it reduce the amount of HIV in the blood of those participants who became infected with HIV. While the early closure of a trial is always a hard experience, we do go forward from here. This result opens a conversation – a place to discuss where we are in the development of a vaccine and what we understand about the science of HIV prevention. It helps to remind us that in the thirty years we have known HIV, nothing about this virus has been easy. Yet, we are stronger for the struggle. Our experience as gay men throughout the history of HIV/AIDS has proven that we surge forward after setbacks.

Although we did not find a vaccine from this trial, we did learn. And because of that learning I remain hopeful about our search for a vaccine. From this trial we took away victories that can help change the face of research and its relationship to our community. This trial showed us how researchers and communities can work together to recruit under-represented populations that have not been engaged in HIV vaccine research. The trial offered a model for how research can be more reflective of the communities that carry the highest burden of HIV and could most benefit from an effective vaccine. We learned how to work with a disengaged population to help them see (again) why an HIV vaccine matters to them.

These are lessons that will help inform the science of HIV prevention as it moves forward. More importantly, these lessons reassure highly affected communities that the research landscape is trying to do better and address past wrongs that have contributed to a culture of mistrust and disengagement from research. If a solution to the HIV puzzle is to be found, it must come from community members and researchers working together. Preconceived notions that each of these groups may have about the other serves to only stifle an essential dialogue. To truly build momentum that will lead to the end of the epidemic will require both sides to be open to understanding each other, and to appreciate what they each bring to the work. It is through the collective actions that synergy happens. Ultimately, success means a vaccine for all of us.

The gay community must work to maintain the engagement that this trial has started. We need to build upon our unique knowledge and experience of HIV and bring that expertise to the table.

At the end of the day, these results do not change the fundamental truth that an HIV vaccine remains critical to any long-term strategy to end the AIDS epidemic in our community and around the world. Although it’s a bit of a cliché, we have to remember that it’s not how many times you fall down; it’s how many times you get back up, something our community has always done.

About Matthew Rose

Matthew Rose is a long-time HIV/AIDS advocate. For the last three years he has been a member of Prevention Research, Outreach, Advocacy and Representation (PxROAR), a domestic program created by AVAC to offer training for advocates in biomedical HIV prevention research education. Previously Matthew spent two and a half years with the National Coalition for LGBT Health overseeing its HIV/AIDS policy work. Matthew is a member of the Capital Area AIDS Prevention Effort; sits on the ethics working group for the HIV Vaccine Trials Network; serves on the national steering committee of the Black Treatment Advocates Network; and is chair of the policy committee and a member of the organizing committee of the Young Black Gay Men’s Initiative.

“Access to Care is not the Same as Actually Accessing Care”

April 25, 2013 in Access2Care

Steve-Houldsworth-webby Steve Houldsworth,
Program Manager, BEACON  (Barrier Elimination and Care Navigation) Project
Saint Louis Effort for AIDS

She was only our second BEACON client. As I followed her down the steps to her basement apartment, I knew that our project was really going to make a difference. Her records in our statewide database showed that she had attempted to enter Ryan White case management three times over the past two years, but never made it to any of her enrollment appointments.  When I talked to her earlier that day, she was surprised that I was willing to come to her home to complete her enrollment.  And, when I arrived at her door, she hugged me and thanked me for coming.  As she told me her story, most of it matched my expectations of who the BEACON Project would serve.  She had been living with HIV for 10 years, but staying in care had been difficult because of mental health issues, transient housing, and transportation problems.  She had not seen an HIV specialist in the last two years. But, as I began to fill out the paperwork to enroll her for services, I was the one who was surprised. When I asked if she had any insurance, she pulled out her Medicaid card.

In the HIV world, we talk a lot about the need for people living with HIV to have access to medical care. Of course, access is necessary, but the BEACON Project has taught me that it is not sufficient.  Often people need someone with them to take that journey from denial to treatment.  As BEACON Project staff, we get to be that someone.

Our best estimate is that there are approximately 2,000 people living with HIV in the Saint Louis region who have not received medical care in the past year. If our first 150 clients are any indication, these 2,000 people are struggling with a range of issues, including HIV stigma, poverty, fear, homelessness, substance abuse, and mental health issues. Because our staff funding comes from a grant from AIDS United, we are able to take the extra time with those clients who need it most.  One client met with a peer advocate for more than 8 months before he was ready to even find out what his cd4 count and viral load was.   Another client spent months building rapport with our community nurse before she felt ready to trust another medical professional.  One important lesson I have learned through the BEACON Project is that the power of personal connection cannot be underestimated.

We live in interesting times.  The Affordable Care Act and Medicaid expansion will most likely provide access to medical care for significant numbers of people living with HIV who have not previously had insurance.  This change will make a profound positive difference in many, many lives. However, the BEACON clients have taught me that having access to care is not the same as actually accessing care.