The Collective Power of AIDSWatch 2015


Nikki Giovanni wrote a poem called “The New Yorkers.” This is the beginning of that poem:

“In front of the bank building after six o’clock the gathering of the bag people begins. In cold weather they huddle around. When it is freezing they get cardboard boxes.”*

Stop! I immediately thought of HOPWA (Housing Opportunities for People with AIDS) and the truth we were striving to share with members of Congress on April 14, 2015. Four hundred advocates from thirty states and Puerto Rico were about to converge on Capitol Hill as part of AIDSWatch 2015. One of my peers said, “You cannot stay adherent to medications if you are homeless.” Another said, ”There are currently fifty thousand households served by HOPWA while 1.2 million people in America live with HIV.”

We had so many issues to bring to the attention of Congresspeople. These are some of the issues:

  •  there are fifty thousand new HIV infections each year;
  • young people under the age of twenty-five accounted for one in five new infections in 2012;
  • in more than one thousand instances, people with HIV faced charges under HIV-specific statutes in the United States and these charges are not based on science;
  • syringe exchange prevents the transmission of HIV and there is a federal ban on syringe exchange programs!

I had an opportunity to attend a visual journaling class the Sunday after AIDSWatch 2015. I wanted to make sure that my collage pages reflected hope, with power, truth, and a clear civil rights message. We were led in meditation by our leader and then each of us began searching what would manifest our goals for the art we were creating.

I immediately found a magazine that had nine southern states as part of a beautiful graphic and I knew that was mine! One other page included the statistic “1 in 5,” and yet another page had young people at the microphone. My collage page for my journal was to tell the story of AIDSWatch with hope and determination. I have experienced so much profound joy on my journey, so the words “Experience Joy” dominate the top of my page.

In 2015, HIV is still a disease of disparities. We know and believe that health care is a human right. I was drawn to Twitter during our Monday morning forum at AIDSWatch, and found myself typing these words:

”We are HUMAN GEOGRAPHY! That means as constituents our words matter, our words are paramount, our words save lives!”

Race matters. African-Americans account for one half of all new infections. How can black women living with HIV get quality care if it is not mandated that providers, AIDS service organizations, clinicians, and public health departments get anti-racism training? We need to ask questions like: Are the Southern Poverty Law Center and the NAACP training and sending out attorneys to help in each of the nine southern states that are now the epicenter of the AIDS epidemic in America? Who is standing up for transgender women? Who is standing with and fighting for the end of discrimination against LGBTQ youth?

“One ounce of truth benefits like ripples of a pond.” We had so much truth to tell on Capitol Hill. The stigma is so great in nine southern states that many get an AIDS diagnosis on their first visit to a clinic. Where are the leaders from faith communities? Thirty four years into this epidemic we are still asking, “Where are our allies?”

What kind of truth would I tell our Senators and Representatives from Pennsylvania? I decided I had to speak about syringe exchange and comprehensive sex education. Young people in Lancaster County, Pennsylvania, can get $3.00 bags of heroin in rural areas and are desperate for a needle exchange program. Congress must end the federal ban on syringe exchange programs in the fiscal year 2015.

As a teacher, I have tried to share bold truth for years, regarding comprehensive sex education. One of our big “asks” as we spoke to the staffers of our Senators and Representatives was to eliminate the federal abstinence-only programs. They have never worked. Some seventh graders have openly stated that they have already had sex with three partners. They are desperate for truth from us. They are so valuable, so precious. Condoms need to be available in high schools. This is where I reiterate, “Young people under the age of twenty-five are twenty per cent of the new HIV infections each year.”

This work is arduous. As I look at my visual journal, I see that I included phrases like, “Follow your dreams,” “Feed your soul,” and “Seek adventure and respect each other. “ My dream has no fairy tale ending; rather it has an ending so bold that it’s happening as I write.

We, the people with HIV and AIDS, will end this epidemic. We are intrepid. HIV is not a crime. The Pennsylvania team spoke about Barbara Lee’s bill, the HR 1586 and asked our representatives to co-sponsor this bill, the REPEAL HIV Discrimination Act, because HIV criminal laws are often based on long-outdated and inaccurate beliefs rather than science. We had to explain to one staffer that if your viral load is undetectable it is not possible for another person to get HIV from you. What will you get from me? You will get authentic, bold, unrelenting truth!

The HIV epidemic is primarily an epidemic of women of color. We are waging a fierce civil and human rights battle! This is where I quote Nikki Giovanni once more: “For awhile progress was being made . . . then . . . hammerskjold was killed, lumumba was killed, and diem was killed, and malcolm was killed, and evers was killed, and shwerner, goodman, and chaney were killed, and liuzzo was killed, and stokely fled the country, and leroi was arrested, and rap was arrested . . .”

It is not OK that people still die of this disease! It is not OK that stigma exists and keeps people from being tested! It is not OK that children’s lives are lost because we don’t have comprehensive sex education in schools. It is not OK that there is a federal ban on syringe exchange. It would be worse if there had been no AIDSWatch 2015.

We, the activists and advocates, spoke mightily on Capitol Hill. On April 13, and April 14, 2015, we hope we spoke words so powerful that they may still be reverberating. Our work is unfinished. As Elizabeth Taylor once said, “We must win for the sake of all humanity.”

*All quotes from Nikki Giovanni’s poetry are from the book Selected Poems of Nikki Giovanni.


Missions Align, Improving Access and Fighting Disparities to End the HIV Epidemic

We’ve never been better positioned to end the AIDS epidemic in the United States, and yet almost 50,000 people still become newly infected each year. And, this number has not shifted in a decade. Despite new tools that help us prevent and treat HIV – too many people still don’t have access to education, health care and the supportive services needed to truly turn the tide on this epidemic.

I remember volunteering as an assistant orderly at a community hospital in Texas when I was in high school. Back then, we would literally “suit up” with gowns, masks, caps and gloves just to deliver meals to the rooms of people living with HIV. I also remember being afraid of what I didn’t know and understand about HIV. Looking back on that experience, I am discomfited by both the way society and I handled the sensitivity towards persons living with HIV. Thankfully – we’ve all come far since then.

According to the Centers for Disease Control and Prevention (CDC), more than 1.2 million people in the United States live with HIV and 14 percent do not know that they are infected. Illinois communities are impacted by HIV, but not uniformly. For example, while African Americans account for 14 percent of the US population, we represent 44 percent of all new HIV infections. This disproportionate impact is shared with other racial minorities, gay and bisexual men, people living in or near poverty, and transgender women.

We have expanded access to health care and we now have medications that frequently make HIV a manageable condition, while renewing our emphasis on prevention strategies that work. Collectively, these developments give us the tools needed to end the epidemic.

As a black man, the HIV-related disparities my community faces are egregious, and particularly pronounced for black gay and bisexual men. Not only are African Americans more likely to contract HIV, we are also less likely to be tested. In fact, 75 percent of African Americans have never been tested for HIV despite our community’s higher incidence. Even when tested and connected to care, we still experience disparities in outcomes. For example, only 28 percent of African Americans living with HIV are virally suppressed, compared to 32 percent of White Americans. It is clear that we need to address structural determinants of health that perpetuate stigma and limit access to health care in the black community.

Not only is this a personal passion, it is a professional mission. In addition to volunteering as Trustee for AIDS United, I serve as President of Harmony Health Plan, a WellCare Company, which is committed to investing in the lives and health of vulnerable and at risk Americans. Currently, WellCare provides coordinated care to millions of people enrolled in government-sponsored health care programs across the country. Our mission to serve commits us to helping our members access the right care, at the right time and in the appropriate setting, thus helping them live better, healthier lives. We are also committed to partnering and investing in programs that improve health and address disparities. That’s why, I’m proud to announce WellCare’s $20,000 donation to AIDS United to support their incredible work to improve access and retention in care.

The synergy between WellCare and AIDS United is clear – and I’m thrilled that our goals so closely align. An investment in AIDS United’s work to end the HIV epidemic will help expand access to health care for people who need it most. Not only is it the right thing to do, it is a sound investment for WellCare, a company that is truly committed to improving the health of our communities.

Dr. Robert “Bobby” Hilliard, Jr. is a member of the AIDS United Board of Trustees.

To learn more about HIV testing and support visit

To learn more about how WellCare helps its members live better, healthier go to


Executive Order — HIV Care Continuum Initiative


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By the authority vested in me as President by the Constitution and the laws of the United States of America, and in order to further strengthen the capacity of the Federal Government to effectively respond to the ongoing domestic HIV epidemic, it is hereby ordered as follows:

Section 1. Policy. Addressing the domestic HIV epidemic is a priority of my Administration. In 2010, the White House released the first comprehensive National HIV/AIDS Strategy (Strategy), setting quantitative goals for reducing new HIV infections, improving health outcomes for people living with HIV, and reducing HIV-related health disparities. The Strategy will continue to serve as the blueprint for our national response to the domestic epidemic. It has increased coordination, collaboration, and accountability across executive departments and agencies (agencies) with regard to addressing the epidemic. It has also focused our Nation’s collective efforts on increasing the use of evidence-based approaches to prevention and care among populations and in regions where HIV is most concentrated.

Since the release of the Strategy, additional scientific discoveries have greatly enhanced our understanding of how to prevent and treat HIV. Accordingly, further Federal action is appropriate in response to these new developments. For example, a breakthrough research trial supported by the National Institutes of Health showed that initiating HIV treatment when the immune system was relatively healthy reduced HIV transmission by 96 percent. In addition, evidence suggests that early treatment may reduce HIV-related complications. These findings highlight the importance of prompt HIV diagnosis, and because of recent advances in HIV testing technology, HIV can be detected sooner and more rapidly than ever before.

Based on these and other data, recommendations for HIV testing and treatment have changed. The U.S. Preventive Services Task Force now recommends that clinicians screen all individuals ages 15 to 65 years for HIV, and the Department of Health and Human Services Guidelines for Use of Antiretroviral Agents now recommends offering treatment to all adolescents and adults diagnosed with HIV.

Furthermore, ongoing implementation of the Affordable Care Act provides a historic opportunity for Americans to access affordable, quality health care. The Act is expanding access to recommended preventive services with no out-of-pocket costs, including HIV testing, and, beginning in 2014, insurance

companies will not be able to deny coverage based on pre-existing conditions, including HIV. Starting October 1, 2013, Americans can select the coverage that best suits them through the new Health Insurance Marketplace, and coverage will begin January 1, 2014.

Despite progress in combating HIV, important work remains. Since the publication of the Strategy, data released by the Centers for Disease Control and Prevention show that there are significant gaps along the HIV care continuum — the sequential stages of care from being diagnosed to receiving optimal treatment. Nearly one-fifth of the estimated 1.1 million people living with HIV in the United States are undiagnosed; one-third are not linked to medical care; nearly two-thirds are not engaged in ongoing care; and only one-quarter have the virus effectively controlled, which is necessary to maintain long-term health and reduce risk of transmission to others.

In light of these data, we must further clarify and focus our national efforts to prevent and treat HIV infection. It is the policy of my Administration that agencies implementing the Strategy prioritize addressing the continuum of HIV care, including by accelerating efforts to increase HIV testing, services, and treatment along the continuum. This acceleration will enable us to meet the goals of the Strategy and move closer to an AIDS-free generation.

Sec. 2. Establishment of the HIV Care Continuum Initiative. There is established the HIV Care Continuum Initiative (Initiative), to be overseen by the Director of the Office of National AIDS Policy. The Initiative will mobilize and coordinate Federal efforts in response to recent advances regarding how to prevent and treat HIV infection. The Initiative will support further integration of HIV prevention and care efforts; promote expansion of successful HIV testing and service delivery models; encourage innovative approaches to addressing barriers to accessing testing and treatment; and ensure that Federal resources are appropriately focused on implementing evidence-based interventions that improve outcomes along the HIV care continuum.

Sec. 3. Establishment of the HIV Care Continuum Working Group. There is established the HIV Care Continuum Working Group (Working Group) to support the Initiative. The Working Group shall coordinate Federal efforts to improve outcomes nationally across the HIV care continuum.

(a) Membership. The Working Group shall be co-chaired by the Director of the Office of National AIDS Policy and the Secretary of Health and Human Services or designee (Co-Chairs). In addition to the Co-Chairs, the Working Group shall consist of representatives from:

(i) the Department of Justice;

(ii) the Department of Labor;

(iii) the Department of Health and Human Services;

(iv) the Department of Housing and Urban Development;

(v) the Department of Veterans Affairs;

(vi) the Office of Management and Budget; and

(vii) other agencies and offices, as designated by the Co-Chairs.

(b) Consultation. The Working Group shall consult with the Presidential Advisory Council on HIV/AIDS, as appropriate.

(c) Functions. As part of the Initiative, the Working Group shall:

(i) request and review information from agencies describing efforts to improve testing, care, and treatment outcomes, and determine if there is appropriate emphasis on addressing the HIV care continuum in relation to other work concerning the domestic epidemic;

(ii) review research on improving outcomes along the HIV care continuum;

(iii) obtain input from Federal grantees, affected communities, and other stakeholders to inform strategies to improve outcomes along the HIV care continuum;

(iv) identify potential impediments to improving outcomes along the HIV care continuum, including for populations at greatest risk for HIV infection, based on the efforts undertaken pursuant to paragraphs (i), (ii), and (iii) of this subsection;

(v) identify opportunities to address issues identified pursuant to paragraph (iv) of this subsection, and thereby improve outcomes along the HIV care continuum;

(vi) recommend ways to integrate efforts to improve outcomes along the HIV care continuum with other evidence-based strategies to combat HIV; and

(vii) specify how to better align and coordinate Federal efforts, both within and across agencies, to improve outcomes along the HIV care continuum.

(d) Reporting.

(i) Within 180 days of the date of this order, the Working Group shall provide recommendations to the President on actions that agencies can take to improve outcomes along the HIV care continuum.

(ii) Thereafter, the Director of the Office of National AIDS Policy shall include, as part of the annual report to the President pursuant to section 1(b) of my memorandum of July 13, 2010 (Implementation of the National HIV/AIDS Strategy), a report prepared by the Working Group on

Government-wide progress in implementing this order. This report shall include a quantification of progress made in improving outcomes along the HIV care continuum.

Sec. 4. General Provisions. (a) Nothing in this order shall be construed to impair or otherwise affect:

(i) the authority granted by law to an executive department, agency, or the head thereof; or

(ii) the functions of the Director of the Office of Management and Budget relating to budgetary, administrative, or legislative proposals.

(b) This order shall be implemented consistent with applicable law and subject to the availability of appropriations.

(c) This order is not intended to, and does not, create any right or benefit, substantive or procedural, enforceable at law or in equity by any party against the United States, its departments, agencies, or entities, its officers, employees, or agents, or any other person.


NHAS 2.0 Unveiled at Morehouse College

At the beginning of an hours-long symposium held at Morehouse College, the Office of National AIDS Policy Director unveiled the National HIV/AIDS Strategy for the United States: Updated To 2020. Minutes prior, President Obama signed an executive order launching the new updated strategy and directing federal agencies to implement it. The executive order and updated strategy encompass previous executive orders on the HIV Care Continuum Initiative and recommendations of the Federal Interagency Working Group on the Intersection of HIV/AIDS, Violence against Women and Girls, and Gender-Related Health Disparities. Addressing the gathering in a video, the President said:

“We’ve come a long way in the fight against AIDS and we can’t let up now. For those whose lives are still at risk, and for those who didn’t live to see this moment let’s keep working for an AIDS Free Generation.”

The updated strategy uses the framework of its predecessor while creating new focal points and indicators based on new research. It retains the previous goals to reduce HIV infections, increase access to care, reduce disparities, and create a coordinated response among federal agencies.

New developments include the addition of four components on which the government plans to focus efforts: widespread testing and linkage to comprehensive care, broad support for treatment adherence for people with HIV, universal viral suppression, and full access to PrEP.

The strategy additionally put forward 10 indicators (quantitative benchmarks to measure the success of the strategy):

· Increase the percentage of people living with HIV who know their serostatus to 90%+
· Reduce the number of new diagnoses by at least 25%
· Reduce the percentage of young gay and bisexual men who have engaged in HIV-risk behaviors by 10%+
· Increase the percentage of newly diagnosed persons linked to HIV medical care within one month of their HIV diagnosis to at least 85%+
· Increase the percentage of persons with diagnosed HIV infection who are retained in HIV medical care to 90%+
· Increase the percentage of persons with diagnosed HIV infection who are virally suppressed to 80%+
· Reduce the percentage of persons in HIV medical care who are homeless to 5% max.
· Reduce the death rate among persons with diagnosed HIV infection by at least 33%+
· Reduce disparities in the rate of new diagnoses by at 15%+ in the following groups:

o Gay and bisexual men;
o Young Black gay and bisexual men;
o Black females;
o and persons living in the Southern United States.

· Increase the percentage of youth and persons who inject drugs with diagnosed HIV infection who are virally suppressed to 80%+

The strategy launch featured expert panels discussing the new indicators, the Administration’s efforts to meet the strategy’s goals, the diverse needs of communities most at risk, and the unique role of non-profit and private organizations involved in this work. Monique Tula, AIDS United’s director of capacity building, spoke on the latter panel.

The choice of Morehouse College, a Historically Black College, emphasized the strategy’s focus on disparities and the U.S. south, particularly those faced by African Americans, but also other groups that face health disparities (including men who have sex with men, women, Latino and Latina men and women, transgender people, youth). The original version of the strategy was criticized because it did not focus enough on the disparities faced by key populations.

When unveiling the Strategy, Director Douglas Brooks too, emphasized the importance of the location and the issue of HIV for African Americans stating:

“In the strategy it is clear what we need to do, (the) way to use the best tools and practices to improve health and stop infections. This includes testing, PrEP, providing support to allow people to stay in care and sustained viral suppression, and we need to get this to the communities that need them most now. Let me say loud and clear for the nation to hear: Black lives matter! Black women’s lives matter! Black gay men’s lives matter! Black transgender women’s lives matter! And over the next five years, our strategy is to reduce the burden among Blacks, and Black gay men as much as possible.”

Finally, Director Brooks strongly emphasized that the updated strategy was national, stating, “The updated strategy remains a broad policy document that delineates this administration’s priorities. This is a national plan. Not just a federal one.” He called on the States, local jurisdictions, private and public sector organizations and citizens to become involved in the strategy’s implementation and further emphasized the need for people throughout the country including people with HIV to keep the administration accountable through 2016 (which will be the last year of the Obama administration) and 2020 for future administrations.

The White House also announced plans to release a federal action plan to implement the Updated Strategy on December 1st, World AIDS Day.






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Many US AIDS patients still die when ‘opportunistic’ infections strike

by David Heitz, Healthday Reporter

 Study of San Francisco data for 1997-2012 shows 35 percent death rate over 5 years for these patients.

(HealthDay)—Even after the advent of powerful medications for suppressing HIV, a new study finds that more than one-third of people in San Francisco who were diagnosed with an AIDS-related infection died within five years.


“The main cause of mortality arises from people stopping treatment entirely,” said Dr. Robert Grant, a professor at the University of California, San Francisco, who reviewed the findings but was not involved in the research.

When HIV treatment lapses, so-called “opportunistic” infections and illnesses can arise, posing a real threat to patients’ health, he explained.

The bottom line, according to Grant, is that there is still “a long way to go” in prolonging the lives of Americans with HIV/AIDS.

The new study was led by Dr. Sandra Schwarcz, associate professor of epidemiology and biostatistics at the University of California, San Francisco. She and her colleagues tracked 30 years of data kept by the city’s Department of Public Health, which has kept on San Franciscans with HIV/AIDS since the virus first became known in 1981.

The almost 21,000 medical records in the survey are even more detailed than those kept by the federal government, and include information gathered at diagnosis as well as follow-ups every 18 to 24 months.

Information included CD4 counts (AIDS is defined as the time when the CD4, or a type of white blood cell, falls below a count of 200) and each patient’s viral load. The records also showed whether patients received immunizations against deadly, opportunistic infections common to AIDS patients, such as Pneumocystis pneumonia (PCP) and Mycobacterium avium complex (MAC) as well as other causes of death.

The records were divided into three treatment eras: 1981-1986; 1987-1996; and 1997-2012.

Medications to fight HIV evolved significantly through each of those eras and continues to become more effective. In the early era—before the advent of HIV-suppressing drugs—only 7 percent of people with AIDS-related opportunistic infections lived five years or more, the study found. But in the most recent era, 65 percent lived five years or longer, the research showed.

Why are people doing better now, relative to the 1980s and early 1990s? The researchers credit not only more effective medications, but also the widespread availability of HIV testing in San Francisco, better access to care, and more effective prevention messages.

Nevertheless, 35 percent of HIV-infected people in the study who acquired an opportunistic infection in 1997-2012 still died within five years, Schwarcz and colleagues reported.

There are ways to lower those numbers, Schwarcz said.

“Number one, get diagnosed early,” she said. “Individuals as well as clinicians need to be promoting testing. Early treatment, adherence to treatment, as well as being on the lookout for a range of HIV-related [illnesses], including opportunistic infections, is important.”

Schwarcz, who is also senior HIV epidemiologist at the San Francisco Department of Public Health, said doctors also need to discuss medication side effects—a prime reason for treatment lapses—with their patients. Often, doctors can work with patients to help minimize side effects so that medications continue to be taken as directed.

Other issues in a patient’s life, such as whether they have stable housing or a drug and/or alcohol problem, also need to be monitored to ensure adherence, Schwarcz said.

She pointed out that the demographics of San Franciscans with HIV/AIDS has shifted over time—away from gay, white men to men of color and women.

Her team was also not able to account for the impact of chronic conditions such as heart disease and diabetes, because that information was not available. That’s a shortcoming in the research, Schwarcz said, because as people with HIV live longer, they develop typical diseases of aging such as cancer and heart disease.

Still, opportunistic infections can arise if HIV medication is not taken as directed. These include a brain infection called progressive multifocal leukoencephalopathy (PML), brain lymphomas and other infection-related cancers—all of which remain highly fatal for people with AIDS even today, Schwarcz said.

Grant agreed that early diagnosis of HIV infection and strict adherence to treatment are key in raising survival rates. He added that, earlier this year, a major study confirmed “that starting therapy for HIV earlier brings clinical benefits.”

But he also said that a population of aging, HIV-positive patients is increasingly encountering diseases that can affect everyone.

“The causes of mortality in HIV-positive persons has changed,” Grant said. “While and lymphomas were the main causes of mortality in the past, mortality is now often due to lung cancer, , suicide and overdose.”

These too, can be prevented, however. “Attention to substance health—including tobacco use—and mental health are keys to decreasing mortality in this era,” Grant said.

The study was published recently in the Journal of Infectious Diseases.

Cuba becomes first nation to eliminate mother-to-child HIV

Cuba on Tuesday became the first country in the world to eliminate mother-to-child transmission of HIV and syphilis, the World Health Organization said.


“Eliminating transmission of a virus is one of the greatest public health achievements possible,” said WHO Director-General Margaret Chan.

“This is a major victory in our long fight against HIV and , and an important step towards having an AIDS-free generation.”

Universal health coverage, improved access to tests and increased attention to maternal care were credited with the success, defined by health authorities as fewer than 50 cases of mother-to-child transmission of syphilis or HIV per 100,000 live births.

A small number of cases are allowed to persist, despite the certification, because to prevent mother-to-child-transmission of HIV is not 100 percent effective.

Rather, WHO and the Pan American Health Organization (PAHO) define the milestone as “a reduction of transmission to such a low level that it no longer constitutes a public health problem.”

Health authorities have been working in Cuba since 2010 to “ensure early access to prenatal care, HIV and syphilis testing for both pregnant women and their partners, treatment for women who test positive and their babies, caesarean deliveries and substitution of breastfeeding,” said a WHO statement.

“Cuba’s success demonstrates that universal access and are feasible and indeed are the key to success, even against challenges as daunting as HIV,” said PAHO Director Carissa Etienne.

“Cuba’s achievement today provides inspiration for other countries to advance towards elimination of mother-to-child transmission of HIV and syphilis.”

Each year, 1.4 million women living with HIV around the world become pregnant.

Left untreated, they have a 15 to 45 percent chance of passing the virus to their children during pregnancy, labor, delivery or breastfeeding.

But the risk of transmission is just over one percent if antiretroviral medicines are given to both mothers and children.

The number children born annually with HIV was 400,000 in 2009.

By 2013, the number was down to 240,000 in 2013.

But intense effort is needed to meet the global target of less than 40,000 new child infections per year by 2015, say.

“It shows that ending the AIDS epidemic is possible and we expect Cuba to be the first of many countries coming forward to seek validation that they have ended their epidemics among children,” said Michel Sidibe, executive director of the United Nations AIDS agency.