Browsing Category: Policy/Advocacy

Next Steps for PrEP

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

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

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

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

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

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

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

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

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

AIDSWatch 2014: The Power of Advocacy and Sharing Our Stories

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

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

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

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

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

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

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

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

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

Take Action During Viral Hepatitis Awareness Month

Monique-Tula-webBy Monique Tula
Director, Capacity Building
AIDS United

Many people have referred to hepatitis C as the silent epidemic because millions of people have been infected, yet many are unaware. In an effort to raise awareness about hepatitis, May has been designated as Hepatitis Awareness Month and May 19th is specifically set aside as National Viral Hepatitis Testing Day. With that in mind, AIDS United encourages people who are at risk, especially people with HIV, to get tested, and for those who are positive to learn more about all the treatment options available to them. AU also urges health care providers and HIV community based organizations to take aggressive action to educate patients and clients about chronic viral hepatitis, including where to get screened and how to access treatment and support.

Following in the footsteps of HIV advocates who developed the National HIV/AIDS Strategy and as part of Healthy People 2020, the US Department of Health and  Human Services recently updated its roadmap for improving viral hepatitis surveillance, screening, and treatment protocols. Together, the Action Plan for the Prevention, Care, and Treatment of Viral Hepatitis and the Affordable Care Act, can greatly improve access to high quality, state of the art treatment technologies that were previously untenable for many people living with HCV.

The updated plan noted recent developments in treatment research which has led to exciting new options for people living with HCV. The new drugs work better than current treatment strategies: they cure HCV more often, in less time, and have fewer side effects. Some experts call the new drugs “game changers,” and expect that they will greatly increase the number of Americans who seek treatment.

May2014 HCV-graph

As the chart indicates, there is a long way to go before we will begin to see a significant rise in the number of people living with HCV being treated for this  condition. But before a person can access treatment, they need to know their status. And once they know their status they need to be assured that they can access treatment when they’re ready. The US Preventive Services Taskforce and CDC both recommend “birth-cohort” and risk-based screening for chronic HCV infection. While these recommendations are intended to identify people with HCV and link them to care, it is unknown if a positive screening alone, is enough to motivate a person to seek care. In fact, a recent study suggests that the main barrier to seeking further care following a positive HCV test result is lack of health insurance[1].

But there is good news. The same study indicated that expanding healthcare coverage is likely to increase access to HCV-related care. ACA implementation may provide a mechanism to link previously uninsured people living with HCV to care and treatment. Previously, people with existing health problems were often unable to buy coverage and others were excluded from Medicaid. But because the ACA has barred these practices, enrollees with HCV are now eligible for coverage.

In addition to the enhanced Medicaid reimbursement rate for specific evaluation and management services, State Medicaid Health Home programs will also provide care coordination services like case management, referrals to social support services, and use of health information technology to high-need Medicaid beneficiaries with chronic conditions like HCV. As implementation moves forward, it will be important for advocacy groups to ensure state Medicaid officials are aware that viral hepatitis is an eligible condition for the program.

This year, we truly have something to celebrate during National Hepatitis Awareness Month given the advances in treatment protocols and meaningful gains in ensuring access to treatment through the ACA. But let’s not stop here. Let’s continue the momentum by educating people about and participating in local Hepatitis Testing Day events. The CDC has a great site that will help you find a local event or start your own. Perhaps most importantly, AIDS United urges you to get screened yourself if you think you may be at risk for viral hepatitis. Finally, the National Viral Hepatitis Roundtable is a fantastic resource where you can find the latest updates about viral hepatitis and how to get more involved in advocacy efforts. Visit their website, get educated, get screened, and join us in our fight to raise awareness about viral hepatitis!

You can help make a difference right now by calling your Members of Congress during the month of May – ideally on May 19, National Hepatitis Testing Day – and asking them to take legislative actions to advance the fight against viral hepatitis. For more details on this Action Alert, click here.


[1] Bridging the Gap between HCV Screening and Access to Care: Insights from National Health and Nutrition HCV Follow-up Study, 2001-2010. Ivo Ditah, MD, MPhil1; Taiwo Ngwa, MD2; Michael Charlton, MD3; and Patrick S. Kamath1. Division of 1Gastroenterology and Hepatology; 2Internal Medicine, Mayo Clinic, Rochester, MN; 3Hepatology and Liver Transplantation, Intermountain Medical Center, Salt Lake City, UT, United States.

From Colorado to Washington, DC: An Eye-Opening AIDSWatch Experience

laurie-priddy-pwn-usa-website-photoBy Laurie Priddy
Western Region Coordinator,

Positive Women’s Network-USA – Colorado

I decided to join AIDSWatch 2014 after hearing women from Positive Women’s Network-USA-Colorado (PWN-USA-Colorado) discussing it back in December 2013. I was intrigued because it appeared to be something that would further my knowledge about policy, laws and the power of advocacy.

Sharing our experiences with legislators is imperative. Many times they receive letters without ever seeing us. It isn’t just the visual; it is the expression on our faces, the tone in our voices and the ability to engage our life experiences eye to eye. We break the vision in a legislator’s head of what people like us look like. Our humanness is revealed.

A month beforehand, I knew going to AIDSWatch would require me to suit up and remove the faded Levis and T-shirts that I feel comfortable in. I began looking for an outfit that would look like I could be taken seriously as I approached the suits on the Hill. I had my nails done so they didn’t look like I had just chopped wood or been digging into Mother Earth.

The clothes were in place; now to challenge the mind to retain the facts, the facts, the facts, as well as the personal experience.

The first night in D.C., I joined up with other powerful, fierce and confident women of PWN-USA at a restaurant. As the evening continued, the women from PWN-USA-Colorado energetically discussed our months of learning about the seven issues on the AIDSWatch policy agenda. Barb Cardell, Kari Hartel, Penny DeNoble, Rica Rodriguez, Diane Walker and I huddled around each other as if we were getting the plays for a football game. We were getting close to Monday’s game day. Sleepless night. Early morning.

barb_laurie_tiptonMonday began with us ladies taking a brisk walk to the conference center. The women were pumped up and ready to take on the day and our representatives. During the policy briefings, my head was reeling with concern as to whether I understood and could articulate the information. Sure this information was about issues that affect my life and that I have been living with for the last 25 years; but more important, it was about ENDING AIDS IN AMERICA, and the 1.1 million people living with HIV/AIDS in the U.S. My shoulders didn’t feel wide enough.

As my friend and mentor Barb Cardell and I began our trek to Representative Scott Tipton’s office, I wanted to jump out onto Connecticut Avenue and run. Between complete confidence from Barb and a cab driver reminding me that legislators put their pants on the same way we do, I felt like I had an astral projection right to the front door of Rep. Tipton’s office.

I need to tell you that, when you look at where I came from, where I was standing was one of those life-changing moments. I have always been wonderful at screaming, holding signs, putting friends’ ashes on the White House lawn. But today, I was a woman advocating in a professional manner.

We met with Rep. Tipton’s health expert and began our ask. We discussed the importance of progressive laws in the state of Colorado, such as comprehensive sex education, and that these laws need to be implemented on a federal level. During this meeting I could see in action the morning conference slide that listed the important steps of a Hill visit: A) organize your meeting; B) make it personal; C) do your homework; D) offer solutions; E) keep it short; F) make your ask (“will you support this” and then wait for the answer); G) follow up.

Each one of the women from our group in Colorado took the lead in other representatives’ offices. You were never alone in these meetings; you were backed by your sisters sitting at the same table with you, ready to share their input on something they had studied or even just for straight-out support. I felt so very proud seeing my sisters from PWN-USA-Colorado in action, sharing their knowledge with such poise and articulation. WOW!

Tuesday morning I woke up early to make sure I had a seat at the breakfast conference with Douglas Brooks, director of the Office of National AIDS Policy (ONAP). At this listening session, people living with HIV raised issues that would be taken back to the President. Discussion ranged from Ryan White Part D, to male heterosexual voices, to incarceration, to why we can’t change programs that have proven to work, to employment and labor.

This entire engagement raised the awareness for me that we are more than whiners and protesters; we are women living with HIV and participating in powerful change through our strong knowledge and voices, to ensure that we are part of shaping laws that affect our HIV community.

Many of us come from places where our voices never felt strong or where we could not ask for what we needed. I know this to be a myth. And I know that, when it comes to raising our voices for change, THE RIGHT TIME IS NOW!

Laurie Priddy is the Western Region Coordinator of PWN-USA-Colorado, one of six regional chapters of Positive Women’s Network – USA.

This blog post was adapted from a piece that originally appeared on PWN-USA’s website. Be sure to visit PWN-USA’s website and learn about all of their great work!

AIDSWatch Blog: Bringing My Personal Story to Capitol Hill

Kayla Headshot

By Kayla Patterson
Pedro Zamora Public Policy Fellow, AIDS United

My father passed away from AIDS in the early 1990s. Since his death, sharing my story has been intimidating because of HIV/AIDS stigma. Whether it is the fear of judgment or the shame that society inadvertently makes people feel surrounding the disease, most people – me included – shut down and hide themselves. AIDSWatch is a forum that allows people living with HIV/AIDS to share their story with legislators so their voices can finally be heard.

I am rarely exposed to Southern California HIV community-specific concerns outside my bubble as a native Northern Californian. Thankfully, I attended three Hill meetings with a group of participants from San Diego that illuminated the daily battles their HIV communities face. I was not only educated on the issues that California faces from a positive person’s perspective, I was also inspired by their courage and strength. Many of them had never been to a meeting with a Congressional office, and I believe all of them felt that their voice was heard, making the entire planning process worth it. I attended four more meetings with the immensely talented and experienced Ernest Hopkins, Director of Legislative Affairs for the San Francisco AIDS Foundation. It was a privilege observing how he maneuvered meetings and communicated with staffers, and I learned many lessons that I will never forget moving forward in my career. Most of our meetings focused on the Housing Opportunities for Persons with AIDS (HOPWA) Program and the lack of affordable housing opportunities in the Bay Area, and many of the staffers assured us that their offices have prioritized affordable housing.

I was proud and honored to be a part of the AIDS United staff for AIDSWatch 2014. The event had such a positive impact on so many attendees. For the first time in many years, AIDS United provided hotel scholarships to many people living with HIV who would otherwise not be able to attend. The most fulfilling and motivating part of the event was witnessing how energized participants were to share their stories. I encourage everyone who participated to continue sharing their stories and inspire others, as you have for me, and continue the dialogue about HIV/AIDS. I look forward to next year and look to seeing even more new participants!

National Youth HIV/AIDS Awareness Day: The Need for Action

Rachel headshotBy Rachel Yull
Public Policy Intern, AIDS United

This Thursday, April 10, was National Youth HIV/AIDS Awareness Day, commemorating the work that young people are doing to end the HIV/AIDS epidemic.  This day gives young people the opportunity to show support as well as educate people about HIV.  I have noticed a lack of young people advocating for social issues, including HIV, and I encourage all youth to get involved in the fight to end HIV in our generation.  There are many things that you can do to get involved, whether getting tested at a local testing center, organizing a sexual health and HIV education program at your school, or distributing free condoms to increase access and awareness of safe practices.

Although HIV has not directly affected my close friends or family, I became an advocate after learning of the health disparities that exist within the Black community.  As a young Black woman I find this day of paramount importance for people in my demographic: the incidence of HIV among Black youth has been on the rise and Black youth make up 57% of all HIV infections among young people age 18-24.

Last year, during my sophomore year of college at Cornell University, I took a class entitled “The Sociology of Health of Ethnic Minorities.” This course gave me the ability to understand and the language to verbalize the health disparities that I have seen in my community.  With this knowledge I decided that I wanted to become an HIV advocate inspiring me to reach out to the AIDS United policy team.  When I received an internship to work with the policy team for a semester, I had no idea what to expect. I had never done any advocacy work before and the only things I knew about HIV were what I learned in class, but my internship at AIDS United has been one of the best experiences I have ever had.

Through my internship I have learned that although the rates of HIV are decreasing there is still much work to be done.  I learned about the HIV treatment cascade, which includes all of the steps of treatment from being diagnosed through having an undetectable viral load.  Among youth the most significant problem along the treatment cascade is a lack of awareness of their status, or their lack of education about the importance of getting tested.  According to the CDC, almost 60% of HIV positive youth do not know their status.  Therefore, National Youth HIV/AIDS Awareness Day reminds us to pay particular attention to campaigns and programs to educate youth on the importance of getting tested and knowing their status.  From my experience at AIDS United, I have also realized the importance of young people getting involved in politics and having our voices heard by our Representatives and Senators in Congress. This is the one of the effective ways that our generation can effect policy change that can help in leading to an end to the HIV/AIDS epidemic.  On this National Youth HIV/AIDS Awareness Day, let’s not only reflect on the work that needs to be done, but resolve to take action and do the work, regardless of our age or status.