Browsing Category: Policy/Advocacy

“Personally, ENDA Passing the U.S. Senate Parallels Powerful Push to End HIV/AIDS”

Diego Sanchez, APR
Director of Policy, Parents, Families and Friends of Lesbians and Gays (PFLAG) 

“We recommit to the struggle. We will see it through, and we will get there.” Familiar? It’s not about last week’s U.S. Senate’s passage of The Employment Non-Discrimination Act (S. 815) by a bipartisan vote of 64-32 to end workplace discrimination based on sexual orientation or gender identity. The 2010 quote comes from Annie Lennox, International U.N. AIDS Goodwill Ambassador, inspired by the Deputy President of South Africa’s long-awaited promise to bring anti-retroviral treatment to everyone in that country, pronounced at the XVIII International AIDS Conference in Vienna, Austria.

For people like me–a global, Southern, New Englander, transsexual Latino man–our world isn’t single-issue. Our world seeks equality for everyone, including the most marginalized. We welcome inspiring quotes like Ambassador Lennox’s, such as one from my own Senator, the late Senator Edward M. (Ted) Kennedy, (D-MA) spoken about ENDA and oft repeated by his designated-before-death ENDA Senate leader, Senator Jeff Merkley(D-OR): “The promise of America will never be fulfilled as long as justice is denied to even one among us.”

Sen. Merkley’s leadership to bring strong bipartisan Senate support to ENDA buttressed well the controversial, non-gender identity-inclusive 2007 ENDA bill H.R. 3685 in the U.S. House from my former boss, Congressman Barney Frank (D-MA-4). I believe that last week’s Senate success was made more handily because of the LGBT community’s vocal unity to honor only full inclusion in ENDA, expressed with dissatisfaction with the narrower bill’s passage in the House in 2007 by creating United ENDA. That House passage emblazoned community unity for full inclusion and led to the first-ever Congressional hearing in the House in 2008 on transgender non-discrimination in the workplace. I had the privilege to be among the first openly transgender witnesses ever before Congress. And click here to listen to an interview immediately after with Meghan Stabler, who submitted written testimony for the hearing.

For me, making ENDA law of the land in the U.S. is personal. I have suffered workplace discrimination because I am transgender. I was a global officer and corporate hospitality communications and diversity management leader, at the forefront of what is now called diversity and inclusion. I was a leader then as now, excited when my employer asked me to create the industry’s most dynamic and robust global diversity program. I did that, and then I got hammered for it. The plan I authored was award-winning externally. I got retaliation internally from my boss (who is no longer with that great company that today earns 100% on HRC’s Corporate Equality Index). I was targeted and terminated because I introduced the word ‘transgender’ for non-discrimination in employment policy. The company’s COO (a Disney alumnus) was supportive of trans inclusion. My boss was not. But it was wrong, and ENDA is right. Until we finish this work for workplace non-discrimination, we are not fulfilling what we at PFLAG in our 350+ chapters decry: live by the Golden Rule, treat everyone as we’d have ourselves treated.

We can celebrate that the inclusive ENDA passed the Senate, and we must continue our work to move an inclusive ENDA through the House in this Congress. We should still urge President Obama to sign an Executive Order this year to ensure non-discrimination on the basis of sexual orientation or gender identity by federal contractors, as we at PFLAG National are doing.

Our work to eradicate HIV/AIDS and to end employment discrimination for LGBT people exhibits so many parallels. The commitment to make ENDA law mirrors the work to prioritize HIV/AIDS as U.S. policy, reflected in the formulation of the National HIV/AIDS strategy, on which I worked, and it feels like the successful efforts ending the U.S. HIV travel ban in 2010. Ending that ban led to the U.S. hosting the 2012 International AIDS Conference. Imagine welcoming our own LGBT people as embraced, protected employees in 2013? Let’s make it real. Keep up the pressure.

Diego Sanchez, APR, is Director of Policy for PFLAG National. Previously, he was the Work Plan Committee Chair of the CDC-Mandated Massachusetts HIV Prevention Planning Group, and Communications Director of AIDS Action Committee of Massachusetts and AIDS Action Council in DC, now AIDS United.

Guest Blog: “I Hear Stories that Make My Heart Ache”

photo---JasonBy Jason Cianciotto, Director of Public Policy, GMHC

What could our movement to end the HIV epidemic accomplish with $24 billion?

According to an estimate from the financial services company, Standard and Poors (S&P), that is what the government shutdown cost the U.S. economy. The same political leaders heralding austerity as critical to our nation’s future facilitated shenanigans that cost nearly 30% of the $85 billion cut by sequestration this year.

This is why I woke up Thursday happy the shutdown ended but even angrier. Amidst this political theater, the real-world affects of federal funding cuts have received little attention. This is especially the case for people living with HIV/AIDS.

It’s time for that to change.

Earlier this week CNN shed light on the consequences of sequestration with a video (http://money.cnn.com/video/news/2013/10/15/n-non-profit-hiv-aids-sequester-budget-cuts.cnnmoney) featuring how cuts have affected programs and services at GMHC. The list is long and depressing: Food pantry bags cut 47%; substance abuse counseling sessions cut 20%; mental health counseling sessions cut 10%; 500 hours of legal counseling services cut; multiple layoffs; a furlough of the entire agency for 1 week; and much more.

Of course, our real focus should be on how these cuts affect the people who come to us for lifesaving services every day. When I spend time with them I hear stories that make my heart ache. One was shocked to learn that he could no longer receive additional portions from our hot meals program, the only nutritious meal he is able to get per day to help mediate the side effects of his medication. Another became distraught after learning that there was now a one-month waiting list to access individual mental health counseling.

As GMHC’s interim CEO Janet Weinberg shared in the CNN video, it’s not like there are other organizations with increased capacity to whom we can refer people in need. These cuts have caused every organization to bleed.

Just a few days before the shutdown, I joined several colleagues from the AIDS United Public Policy Committee for a Congressional visit day focused on the effects of the sequester. We met with several staffers of Members of Congress, including those representing our respectivehome states, Congresswomen Pelosi’s office, and the Health Legislative Aids for House Speaker John Boehner. Our visits with allies produced a unanimous message to bring home: We must actively pursue media outlets and allies to educate the public and lift the voices of people who oppose these draconian federal funding cuts.

Now that the shutdown drama is over, it’s urgent that we re-focus on sharing these stories. The stigma and fear still connected to HIV means that we have to find ways to both empower those willing to share publicly and protect those in need by being their voice when meeting with political leaders and the media.

We also must acknowledge that it will be extremely challenging for our allies in Congress sitting on the new super committee to roll back the sequester. We know that conservatives are already fighting to reduce the cuts to defense programs in sequester phase 2. They will not be as generous to the non-defense-discretionary programs that provide food, housing, and life-saving medication to people living with HIV/AIDS.

Despite these challenges, I still fundamentally believe that we can successfully restore federal support for the fight to end the HIV epidemic. We need to leverage public backlash against those responsible for the shutdown and debt ceiling scare to move political leaders to the center and support candidates in the mid-term election who understand our collective social and moral responsibility to care for each other and provide for our nation’s health.

AIDS United provides a critical structure for us to combine our time, talent, passion, and stories to call for policy change as a strong and unified lobby.

GMHC is a member organization of AIDS United’s Public Policy Committee (PPC)

What’s Missing from the Budget Discussions?

Donna_Crews_2013_webby Donna Crews, Director of Government Affairs

There sure is a lot of conversation going on in Washington these days.  Government shutdown.  Economic shutdown. Repeal of delay of the Affordable Care Act.  A major topic of discussion seems to be getting lost in this mix, though: avoiding additional sequestration cuts come January 2014 if the Budget Control Act law is not revised.  We at AIDS United encourage our colleagues to continue to contact Congress to eliminate sequestration with a balanced approach to federal deficit reduction (federal cuts and revenue increases), to reopen the government, and avoid a federal default. The total spending amount ($986 Billion) being used in the proposed short-term Continuing Resolution (CR) for the discretionary portion of the bill assumes that sequestration continues. Continuing to use that total number, without repealing the sequester will trigger another round of automatic cuts in January. Sequestration must be repealed to ensure non-defense discretionary programs have the necessary funding to meet the growing needs in public health, education, and nutrition programs.

Last week, Minority Leader Nancy Pelosi said at a press conference after a meeting of the four leaders at the White House, “We’ll take your number to keep government open. Give us a chance to vote for it.”  However, AIDS United believes that the spending total should only be used for the short term CR.  The cuts have already cost way too much for the community-based member organizations of AIDS United’s Public Policy Committee (PPC). Congress must restore funding by utilizing the higher Senate number of $1.058 trillion for the long-term solution to Fiscal Year 2014 and replacing sequestration.  Some of our PPC member agencies have seen anywhere from five to 15 layoffs — including both medical doctors and lawyers.  Some have not filled as many as eight positions lost in attrition; are experiencing anywhere from 30 to 100 increased caseloads for case managers; and having to make drastic cuts to hot meal availability.  Waiting lists have been implemented for AIDS Drug Assistance Program (ADAP) medication and for medical treatment slots after an HIV positive initial diagnosis.  As one of our PPC members, Carole Treston of the Association of Nurses in AIDS Care (ANAC) stated, “A waiting list for care is not just an inconvenience; it is a critical time to engage a person in treatment.”  If that patient have to wait six weeks for an appointment it could diminish  motivation to engage in care and further deteriorate their health and the HIV status of his or her partner –  and possibly their community.

The impact of the sequester on HIV prevention programs are just as severe.  One of our PPC members closed their HIV prevention center serving men who have sex with men age 13 to 35, one of the populations most impacted by HIV.  While in one of our jurisdictions the cuts from the Centers for Disease Control and Prevention (CDC) were absorbed by the state, enabling their prevention programs to continue unscathed, the  majority of our PPC member organizations have been faced with dire prevention cuts, forcing reduction in HIV testing and prevention messages to the high-risk HIV-negative population.

HIV-focused trainings and workforce development have also been cut by more than ten percent due to rescissions and sequestration, just when the healthcare workforce — which needs HIV training — will increase with the expansion of the Affordable Care Act.  It is more important than ever to increase our training capacity as more healthcare professionals will interact with HIV-positive individuals across the healthcare spectrum.

At a time when we have the scientific prevention and treatment tools to begin to end the AIDS epidemic in the United States, it would be immoral to allow funding cuts due to sequestration to divert us from this worthy mission.  Congress must find a balanced solution to end the stalemate and – permanently eliminate the sequester; reopen the government; avoid an economic shutdown.  It is too important to the health and well-being of our nation.

What the Supreme Court Decisions Mean to Us

flag over SC

By Aldona Martinka, Pedro Zamora Public Policy Fellow, AIDS United

Having just moved to Washington, D.C. to start my fellowship at AIDS United, I still ooh and aah at every building with grand columns and a fancy dome. I still read every statue and monument’s plaque when I walk by, even crossing the street to do so. When people walk by with nice suits and looks of intent I imagine grand and important work for them. I could barely contain my excitement when a senator walked past me in one of the tunnels below Capitol Hill. I am still amazed by Washington DC: The home of democracy in the Land of the Free.

Nothing I had experienced in my first ten days here, though, or even really in my life, had prepared me for my favorite DC experience so far. Standing in the sweltering heat, jostled by the jubilant crowd in front of the Supreme Court as news of DOMA’s demise exploded through the many supporters of marriage equality. I am so happy for our sometimes misguided, but usually well-meaning country. This decision reaffirms a commitment to equality that I sometimes question, and shows that, even here, you can’t halt progress toward the right thing, you can only delay it. On June 26, the Supreme Court chose to embrace it, and led us by the hand (some of us kicking and screaming) into a, still imperfect, but undeniably better country. I feel so lucky to have been there.

By Melissa Donze, Policy Assistant, AIDS United

On March 26, 2013, I found myself standing near the steps of the Supreme Court. Hundreds, maybe thousands, of people had gathered to celebrate and show support for the LGBT community on the day the Supreme Court was to hear oral arguments in the Prop 8 case. That day, I stood, shouted and cheered in support of equality for all.

Exactly three months later, I found myself again at the Supreme Court steps waiting to hear the decisions on DOMA and Prop 8. I’d been nervous for days leading up to this moment. I’d been poring over law blogs and news articles trying desperately to understand the possible decisions that the Supreme Court could make. How could they deny certain rights and privileges to people just because they loved someone of the same gender? For me, this has always been a non-issue. My best friends are gay. Some of my family members and close family friends are gay. Why should they be treated any different than me just because of who they love?

Despite the blistering heat and sweat, when I heard the Supreme Court’s decisions on DOMA and Prop 8, I got goosebumps. Finally, I thought. This is the moment I’ve been waiting for. I thought of my friends and loved ones. This is progress. This is love. This is history. At the end of the day, this is what really matters.

By Liam Cabal, Program Manager, AIDS United

This week, I had the great privilege of standing outside the Supreme Court when they overturned the Defense of Marriage Act. It was incredible to be there when the announcement of the opinion was made. The crowd cheered and clapped; there were tears, hugs, hoots of excitement. I thought back to when DOMA was enacted. I was still struggling with my own sexuality and that piece of legislation convinced me that I would NEVER be able to get married—at least not to someone I truly loved—and NEVER get the recognition from the government that my love equally deserved. It was hopeless. Thankfully, my melodramatic teenage self was wrong and I couldn’t be happier about it.

This huge step affords LGBTQ couples the same government benefits as their heterosexual counterparts. Let’s use this excitement and momentum to further address issues of discrimination and stigma. Stigma and homophobia, both external and internal, impact perceptions around HIV transmission and willingness to be tested. Overturning DOMA moves us in the right direction in reducing that stigma. Sure, we have still have a long way to go, but this gives me so much hope.

Now. Then. Now.

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

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.