What are you excited about in the fight against HIV/AIDS?

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What are you excited about in the fight against HIV/AIDS?

When I was 17 years old, I found out I was HIV-positive. As a young, Black gay man, I remember the fear of rejection, and the incredible love and support I found among my family and friends. Since the day I first learned my HIV status, I have made it my personal responsibility to fight this disease until we achieve an AIDS-free generation. I know many young people out there feel the same because our risk of infection is high and access to treatment and care can be tenuous.

In the United States, 39 percent of all new HIV cases are among young people ages 13-29, and from 2007-2010, ages 15-19 and 20-24 were the only age groups to experience an increase in the rate of diagnoses of HIV infection. Furthermore, a young black gay man has nearly a one in four chance of becoming infected by age 25. Around the world, young people make up 40 percent of new HIV infections.

While I am excited we are at a tipping point for ending the HIV/AIDS pandemic because of effective prevention, testing and treatment interventions that have been developed, we need to take a close look at the current reality of HIV/AIDS -- and that requires engaging and prioritizing youth.

To realize an AIDS-free generation, we must continue to address barriers to accessible, confidential and affordable health care services for young people.  When you don't know where your next meal is coming from, taking care of your health stops being a priority.

Young people themselves are tackling these barriers, including poverty and lack of access to education and health care, by advocating for holistic, integrated policies and outreach efforts that will improve HIV/AIDS prevention, treatment and care for all young people, especially those disproportionately at risk.

For example, in Seattle, four youth activists marked National Youth HIV/AIDS Awareness Day on April 10th in a special way.  National Youth HIV/AIDS Awareness Day is a call to action led by Advocates for Youth to increase visibility for young people experiencing this stubborn and growing epidemic. They got the mayor to declare April Youth HIV/AIDS Awareness Month and put forward a resolution that reads: 

To achieve an AIDS-free generation, we must prioritize youth leadership and development in order to ensure youth involvement in decisions which impact their health and well-being as well as advance a pipeline for the next generation of HIV/AIDS doctors, advocates, educators, researchers, and other professionals.

To make this resolution a reality, youth activists are working to: require accurate, comprehensive sexual health education be provided in schools; address factors putting LGBT and African American youth especially at risk for HIV; and implement universal testing as part of regular blood work so patients would no longer have to specifically ask for HIV tests and to encourage early diagnosis

The private sector, government, communities and individuals all play an important role in the work that will end this epidemic that dramatically affects the lives and health of young people.

It is important to not only tell our young people they are valued – we need to show them their lives matter through effective and accessible treatments and interventions.

Lawrence Stallworth
Mobile Health Services Specialist, AIDS Taskforce: Greater Cleveland

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Lawrence Stallworth
Mobile Health Services Specialist, AIDS Taskforce: Greater Cleveland

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Lawrence Stallworth is currently the Mobile Health Services Specialist at the AIDS Taskforce of Greater Cleveland.  He is an alum of Advocates for Youth’s Ohio Youth Council and was recently appointed to join the President’s Advisory Council on HIV/AIDS (PACHA) because of his exemplary local and national advocacy work on behalf of young people. 

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What are you excited about in the fight against HIV/AIDS?

We have made amazing advances in the field of HIV in the last 33 years.  Everyone knows how much better the medications are.  Antiretroviral therapy (ART) today has fewer side effects, reduced pill burdens, and better efficacy.  And then our world was turned upside down by the incredible discovery of HIV Prevention Trials Network 052!  We now know that persons living with HIV who are successful on and adherent to ART and who reach an undetectable viral load essentially cannot transmit the disease to others.  As a result, providers are scrambling to make sure that folks know their status, that all positive persons have access to medications, and that we help people to succeed in medical care.

This last and critical step, helping patients to succeed on their medications, requires a lot of different kinds of support.  For many people living with HIV disease, other issues and comorbidities may take precedence.  For example, a person without a stable, safe housing environment may not be able to adhere to medications.  Research has proven that decent and affordable housing is critical to successful medical outcomes and to reductions in risky behaviors.  If a person also lives with hepatitis C or other life-threatening disease states, then those health conditions must also be treated.  If mental health or substance use issues are involved, then these complications must also be addressed in order to maximize the benefits of excellent medications.  We also don’t want to “throw the baby out with the bath water” when it comes to proven, science-based behavioral interventions.  Additionally, the input and expertise of persons living with HIV are crucial to success in crafting programs, especially ones designed to help others living with the disease to stay in care.  And let’s not forget additional biomedical interventions that are now available, such as pre-exposure prophylaxis or PrEP for high-risk negative persons.

I live in the South, which is home to almost half of all new infections and which has the highest HIV/AIDS death rates in the country.  The South also has the poorest health outcomes, the largest uninsured populations, the most poverty, the poorest comprehensive sexual health programs, and the most people struggling with limited resources as they cope with HIV/AIDS.  We must improve these disparities, particularly for minority populations, if we ever hope to end this epidemic domestically.

Here’s the bottom line:  We have a lot of great tools in our toolboxes today to fight this HIV/AIDS epidemic.  The medications are clearly the piece that cannot be omitted.  However, medications combined with good housing, case management, transportation, mental health and substance use services, financial assistance, and many other important services and education will be the key to success in ending this epidemic.  I am hopeful as we move forward that we really can achieve an AIDS-free generation!

Kathie Hiers
CEO, AIDS Alabama

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Kathie Hiers
CEO, AIDS Alabama

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Kathie Hiers has been active in the fight against HIV/AIDS since the epidemic first hit the South in the mid-1980′s. Kathie has served as the CEO of AIDS Alabama since January 2002.  Prior to that, she was the Executive Director of Mobile AIDS Support Services and a founder of the Lee Simmons Fund for People Living with AIDS in Mobile, Alabama.

Kathie is one of 25 people appointed to the Presidential Advisory Council on HIV/AIDS, providing advice and expertise to the President and the Secretary of Health and Human Services. She is also a member of the Planning Committee for the White House Summit on HIV and the South to be held in the spring of 2014.

Kathie is President of the National AIDS Housing Coalition, and Co-Chair of the Federal AIDS Policy Partnership. She also serves on the Public Policy Committee of AIDS United. From 2004 to 2009, Kathie was Chair of the Southern AIDS Coalition, where she played a leading role in changing the Ryan White distribution methodology in the 2006 re-authorization of the bill. Locally, Kathie has served as Chair of the Ryan White Consortium and as President of the Metropolitan Birmingham Services for the Homeless.  She is currently an appointee to the Governor of Alabama’s HIV Task Force.

Kathie is frequently called upon to speak on AIDS housing, advocacy, the South, and rural issues, and has been a featured speaker for many media conferences and Congressional Briefings. Kathie’s work on behalf of the South has been featured in the recent documentary,deepsouth, as well as on the Dan Rather Reports (July 2012).

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What are you excited about in the fight against HIV/AIDS?

Where There’s A Will

We are at a deciding moment in the trajectory of the AIDS epidemic in the United States.  As a result of recent scientific advances, we have something that just a few years ago, we couldn’t even imagine—the promise of an AIDS free generation.  We actually have the tools to end the AIDS epidemic, at least in the U.S.  We have better diagnostic tools, better surveillance tools, better treatment tools, and better prevention tools.

But we have to be careful.  Sometimes we confuse being able to do something with actually doing it.  The question is less can we end the AIDS epidemic and more do we have the will to do it.  For example, getting an HIV test has never been easier or more important. Today, HIV tests are often free, painless and confidential—even anonymous—and they’re fast. And yet some 200,000 (nearly 20%) people living with HIV/AIDS (PLWHA) don’t know their status.

We have better surveillance tools than we’ve ever had before. We can identify hotspots down to zip codes or census tracts. Yet we still have HIV disparities in this country based on geography, race, sexual orientation or all three.

We have better treatments today. The treatments have lower pill burdens.  The regimens are easier, more effective, and have fewer side effects. We now know that treatment is prevention. We can nearly stop HIV transmission by making sure that everyone living with HIV has access to treatment, adhere to their treatments and achieve viral suppression.  And yet, 640,000 PLWHA are not on treatment and only 275,000 have driven their virus to undetectable levels.

We even have the ability to nearly stop acquisition of HIV even if you are exposed.  Pre-exposure Prophylaxis (PrEP), when used properly, can reduce HIV acquisition of HIV by up to 96%.  Yet many people who would benefit the most from PrEP either don’t know what it is or how it works.

If you look at the AIDS epidemic in Black communities, you would not know that we have any of these tools.  Black people represent around 10% of the US population.  Yet we represent nearly 50% of new infections, and nearly 50% of PLWHA in the U.S.  Most Black Americans are unaware or have misinformation about the new tools that could change the trajectory of the AIDS epidemic in our community and dramatically reduce their risk of HIV infection.

We are not going to get to the endgame this way.  We have to do a much better job of raising HIV/AIDS literacy in this country. This is a case of “what you don’t know can kill you”, if ever there was one.  We need to create a demand for treatment and ensure that every American who wants to be treated for HIV can receive the treatment and care they need and deserve.  Treatment without access is not treatment at all.

We need to make sure everyone at risk for HIV infection understand the new bio-medical options available to them, including PrEP.

Finally, we must address the debilitating stigma still attached to HIV/AIDS.  People will not get tested, disclose their HIV status or seek treatment—either therapeutic or preventive—if they fear they will be ostracized, loose their job or home, or face violence.

We can end the AIDS epidemic, but it will take all of us to do our part.  Everyone has a role and responsibility for fulfilling the promise of an AIDS Free generation.

Phill Wilson is the President and CEO of the Black AIDS Institute.

Phill Wilson
President and CEO, Black AIDS Institute

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Phill Wilson
President and CEO, Black AIDS Institute

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Prior to founding the Institute, Wilson served as the AIDS Coordinator for the City of Los Angeles from 1990 to 1993, the Director of Policy and Planning at AIDS Project Los Angeles from 1993 to 1996. He was co-chair of the Los Angeles County HIV Health Commission from 1990 to 1995, and was an appointee to the HRSA AIDS Advisory Committee from 1995 to 1998.

Wilson was the coordinator of the International Community Treatment and Science Workshop at the 12th, 13th, 14th, 15th, and 16th International AIDS Conferences in Geneva, Switzerland; Durban, South Africa; Barcelona, Spain; Bangkok, Thailand; and Toronto, Canada.

Wilson was the co-founder of the National Black Lesbian and Gay Leadership Forum and the National Task Force on AIDS Prevention. He has been involved in the founding of a number of other AIDS service organizations and community-based organizations, including the Chris Brownlie Hospice, the AIDS Healthcare Foundation, the National Minority AIDS Council, the Los Angeles County Gay Men of Color Consortium, and the CAEAR Coalition.

The Ford Foundation named Wilson one of the 20 award recipients for the Leadership for a Changing World, in 2001. He was a member of the U.S. delegation to the 1994 World AIDS Summit in Paris, and has worked extensively on HIV/AIDS policy, research, prevention, and treatment issues in Russia, Latvia, the Ukraine, the UK, Holland, Germany, France, Mexico, South Africa, Zimbabwe, Zambia, Tanzania, India, and Botswana.

He has published articles in the Los Angeles Times, New York Times, LA Weekly, Essence, Ebony, Vibe, Jet, POZ, HIV+ and other periodicals.

Wilson is a recent recipient of the Delta Spirit Award from the Delta Sigma Theta Los Angeles chapter. He was given the Discovery Health Channel Medical Honor in July 2004 and was recently named one of the "2005 Black History Makers in the Making" by Black Entertainment Television.

Wilson holds a BA in Fine Arts from Illinois Wesleyan University. He currently resides in Los Angeles, California.

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What are you excited about in the fight against HIV/AIDS?

Founded in 1982 in direct response to the AIDS epidemic, GLMA has long been involved in issues related to HIV and AIDS.  Although progress has been challenging at times, there is a lot right now to be hopeful about. Significant advances in the treatment and prevention of HIV have led us to an exciting place where we are able to discuss the potential for an end to the epidemic. Condom use, antiretroviral therapies, microbicides, PreP (pre-exposure prophylaxis) and PEP (post-exposure prophylaxis) provide a wide range of tools available help prevent the transmission of HIV. Treatment as prevention is real and within our grasp.

These advances are making a difference in the lives of the people living with and at risk of HIV I treat and care for every day. I have an increasing number of serodiscordant couples who are maintaining healthy, happy relationships with these additional tools. New patients who are HIV negative are staying negative and enjoying a greater sense of empowerment with emtricitabine/tenofovir.  I have also noticed an additional benefit of PreP - many patients, particularly younger patients, who might not have otherwise engaged in regular healthcare are now doing so. My patients with HIV patients are expressing greater interest in and knowledge of the importance of adherence and an undetectable viral load not only for their own health, but as an essential component to preventing transmission.

Spurred in part by these advances, the Obama Administration issued the first National HIV/AIDS Strategy and there has been a strong commitment among LGBT organizations to refocus energy, attention and resources to combating HIV and AIDS. Still, there are many challenges ahead. Laws and policies affecting people living with HIV have not caught up with the science around HIV transmission, treatment and prevention, an issue that forms the core of GLMA’s education and advocacy efforts on HIV. And we certainly must do more to address issues affecting those most vulnerable to HIV within the LGBT community—young gay/MSM and transgender women, particularly people of color.

At GLMA, we are optimistic about what lies ahead as we move into the fourth decade of HIV and AIDS and look forward to partnering with any and all organizations and institutions to end HIV as we know it.

Travis Sherer
PA-C, AAHIVS, GLMA

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Travis Sherer
PA-C, AAHIVS, GLMA

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Travis Sherer, PA-C, AAHIVS, has been a board member for GLMA: Health Professionals Advancing LGBT Equality since 2008. He is the Program Manager of the Lenox Hill Retroviral Disease Center in New York City. Travis is also a past president of the LBGT PA Caucus of the American Academy of Physician Assistants. 

A longtime volunteer at GMHC and other non-profit organizations, Travis is a passionate believer in service to marginalized populations. In 2004, he founded the Health Equity Project, a non-profit organization dedicated to improving health and access to health care in developing countries. Travis was a contributing author to the book Breaking Free: Sexual Diversity and Change in Emerging Nations and is adjunct faculty at Pace University's Physician Assistant program.  He received his BA in Psychology from NYU and his training as a PA at Pace University in New York. He is currently pursuing an MBA at Colorado State University.

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What are you excited about in the fight against HIV/AIDS?

In this week’s Conversations Blog, I’m outlining some of the points that I find most salient in our continuing fight against HIV/AIDS in the United States.

First and foremost, it is imperative that we continue to strive for an effective “cure” (Sustained Virologic Response – SVR – in this case to Antiretroviral Therapies) beyond that which we currently consider to be the standard (“Undetectable” Viral Load). While suppressing the Viral Load in HIV patients is essential to ensuring that they maintain good health, it is also a vital tool in helping to prevent the spread of HIV between serodiscordant sexual partners.

While there have been several reports, in recent years, of patients in various nations and circumstances being “effectively cured,” all of these “cures” require a very specific set of requirements in order to undergo one of these treatments (e.g. – having leukemia; being a newborn). That does not even begin to take into account the barriers created and maintained by the costs associated with these types of highly experimental treatments.

While these treatments do show some promise (even in several, if not all, of the patients in question have since shown signs of the virus reemerging), it is important that those in the HIV advocacy and education communities proceed with caution in regards to how prominently they feature discussion of these cases; without solid peer reviewing and replicative studies, more information is necessary before we can safely say that someone is “cured.”

Secondly, though of no less importance, is the issue of continued care for existing HIV/AIDS patients.

As we all know, once a patient begins a treatment regimen, barring mutative resistances, they will be on that regimen for life. It goes without saying that “life long” drug therapies can be expensive ventures, even for the well insured; for low-income patients, those costs would (and can) be insurmountable without access to Patient Assistance Programs (PAPs), Ryan White, the AIDS Drugs Assistance Program (ADAP), Medicaid, Medicare, and other types of prescription assistance.

As such, it is tantamount that we work tirelessly to guarantee improved access to these programs, in whatever capacity that may occur – providing resource lists and sites that can be made available to those seeking treatment, healthcare providers, clinics, and education and advocacy groups. Providing linkage to these assistance programs is vital for ensuring that all people living with HIV/AIDS have access to treatment, regardless of their income.

On the legislative and funding fronts, advocates and organizations should continue to push for, at the very least, maintained levels of funding for ADAP programs; beyond that, we should not abandon our efforts calling for increased levels of funding on the Federal and State levels.

In addition to maintaining and increasing ADAP funding, we must also take into account the cost issues beyond that of medication – namely, we’re speaking to the cost of doctor visits and basic access issues, such as transportation, co-pays, and insurance premiums – for the uninsured and underinsured, so that the total patient out-of-pocket costs do not amount to an access barrier, leading to failure to access treatment.

On a final note, I would like to mention the importance of foundations providing prescription assistance for the insured HIV/AIDS population. As of this time, the only program that provides this assistance is the Patient Access Network (PAN) Foundation. You will find their HIV/AIDS access link at the bottom of this post.

While it is a great step forward that many HIV patients can now have access to insurance, despite having a pre-existing condition, many insurers have placed HIV drug therapies in higher medication tiers, making co-pays potentially unaffordable. As such, programs like PAN Foundation step in to provide assistance to those who are already insured, but whose co-pays make affording the cost of treatment untenable.

If we hope to maintain our progress in winning the war against HIV/AIDS, it is tantamount that we continue to support this existing foundation, as well as explore options on the local, state, and national levels to create similar foundations in order to provide the wrap-around coverage that is much needed by these patients. Thank you for your continued efforts in the fight against HIV/AIDS.

 

Bill Arnold
Founding Director, CANN

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Bill Arnold
Founding Director, CANN

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William ''Bill'' Arnold is a longtime HIV/AIDS activist and consumer organizer and has been active in developing HIV/AIDS organizations and HIV/AIDS policy at the local, state and national level since the mid 1980’s. Arnold is a founding director (1996) of the Community Access National Network (CANN), formerly the Ryan White CARE Act Title II Community AIDS National Network (TIICANN); he is currently its CEO. He is also a founder (1995) of The National ADAP Working Group, a Washington, DC based advocacy coalition of HIV/AIDS organizations.

His involvement with grassroots HIV/AIDS work has included roles from Board Chair and Board Member, to “Buddy” to AIDS Educator, Community Outreach Director, & pre & post test HIV Counselor. Arnold has testified on HIV/AIDS issues before several county legislatures, the New York State Assembly and the United States Congress on numerous occasions. In addition, Arnold has been active in global AIDS activities as Secretary/Treasurer of AIDSETI (AIDS Empowerment and Treatment International). He also serves on the Fair Pricing Coalition.

More recently, Arnold has also invested a lot of time in raising awareness about Viral Hepatitis.

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