Those were the days, my friend...

           As part of my duties as an Embajadora, I had to moderate a discussion panel titled “Diagnosis and Treatment of HIV in Prisons: Obstacles and Opportunities,” which took place at the Global Village at the XIX International AIDS Conference. The panel included videos of two organizations that work in the prison system: Programa de VIH/SIDA in Ciudad de México, and Comité Contra el SIDA (CoCoSi), from El Salvador.

            At the beginning, I was a bit reluctant to do this, as discussion moderation is not one of my strongest skills, but I accepted the challenge anyway.  And after getting to know the presenters I was definitively convinced that this was a perfect opportunity for me. Nathalie Gras Allain, from the Programa de VIH/SIDA, and Elizabeth Membreño, from CoCoSi, still display that excitement, that motivation that you have when you are close to the people you are assisting.  Unfortunately, this is something that many of us lost after several years in the field, when proposals, finances and the agency’s survival take over and take you away from the most intimate aspect of the organization which, in my view, is precisely the contact with those we support. Nathalie and Elizabeth still have it; they have not lost it.  You can hear it in their words, in the tone of their voices, in the pride that was reflected on their faces as they watched the videos from their respective organizations.

Both videos were very moving, presenting the reality faced by people with HIV/AIDS in the prison system in these two countries. Homelessness, physical and emotional abuse, prostitution, hunger, drug abuse, lack of family support: these were common threads that the participants faced before they were incarcerated. It makes you wonder how the lives of these brothers and sisters would have turned out to be had they not faced such harsh situations.  And then, once inside the prison system, the new set of challenges they had to deal with, such as discrimination based on their HIV status or their sexuality, lack of representation, and lack of access to basic services. 

But there is also another side to their stories.  You also get to know about the love and support they have found inside the system and from each other.  Time and again we saw the participants express how these two things have made them face their reality. They strive to be informed about issues related to HIV and their wellbeing and this must have an impact on their lives. Like treatment adherence, for example; many of the people featured in the video claimed to be fully adherent to their treatment, which could account for their good health despite the conditions in which they live and despite the lack of access to other services, overcrowding, poor nutrition, etc.  One of the doctors featured on the video mentioned that many times the inmates are more knowledgeable about HIV than other health professionals.  And one of the inmates made a statement that can account for this; he said “estamos en el caballo y hay que jinetearlo” – which can be translated into we are mounted on the horse and we must tame it.  Perfect analogy for their situation.

This experience made me reflect on how things have changed in the last 30 years of this epidemic, or at least in the last 20 years in which I have been involved in the struggle against HIV/AIDS.  Before cocktails, before all the medical advances, before the behavioral interventions, there were some basic things that kept people going.  There was love; people loved each other and helped each other out of love, out of a common struggle against something that seemed insurmountable. There was support; people helped each other, volunteers going to delivered hot meals to those in need.  People came together regularly to talk about the challenges, to solve problems, to look for options.  We did what had to be done, what it was necessary, not what was prescribed as the optimal solution. 

We have lost some of that.  And while I am grateful for all the advances and the millions of lives they have saved, I long for those days.  Obviously, not for all the death and despair of back then, but for the common bond that existed and that seems somewhat lost now.  The urge to educate ourselves, to know more, to see what else could be done to improve the chances of staying alive, including taking medications religiously.  Some of that seems to have also been lost in the process. So sometimes is good to view a different reality than our own. Sometimes it is good to see where others are at in order to put into perspective what we have.  And for us, service providers, it is also good to come down from our dark offices full of papers and deadlines, and come back in contact with those we are trying to help.

That is precisely what the videos by these two organizations did to me: it made me come to terms with the reality faced by some organizations today, including my own.  And it has renewed my commitment to face the obstacles just like we did years ago, and take advantages of the opportunities that we have to regain some of what has been lost. 

My acknowledgements and respect for these two organizations and the work they do, and to Nathalie and Elizabeth for the well-placed pride they have on their organizations. You are doing a wonderful job!

PrEP: A Leap Forward but not Far Enough

PrEP, PrEP, PrEP…we have had our good share of information on Pre-Exposure Prophylaxis (PrEP) not only at this conference, but also after the recent approval of Truvada as treatment-based prevention. But, even with all of this information, the question remains: “is everybody ready for this?” That was part of the discussion during the Antiretroviral Prophylaxis: Attitudes and Implementation session at the conference.

The first presentation by Martin Holt, “HIV-negative and HIV-positive gay men’s attitudes towards antiretroviral-based prevention: similar attitudes to pre-exposure prophylaxis (PrEP) but greater skepticism among HIV-negative men about “treatment as prevention,” presented the results of a survey conducted in Australia among gay men. This is a population that is primarily affected by HIV, and the survey aimed to measure the attitudes toward PrEP, medicine and HIV treatment. There were 1,041 men participating in the survey, with 88.3% (919) being HIV negative, and 11.7% (122) being HIV positive.

The survey result showed that both HIV negative and HIV positive have similar attitudes towards PrEP: both groups are cautiously optimistic about it but agree that it should be made available free of charge. However, both groups also think that it would make people less responsible. There were divergent attitudes towards antiretroviral treatment with HIV positive men seeing it as beneficial to their health and HIV negative men seeing is as difficult to take. Likewise, HIV negative men are more skeptical about HIV treatment being effective in preventing transmission.

In summary, survey results indicate that, in the population surveyed in Australia, there are mixed attitudes towards PrEP, with HIV positive men being more optimistic about it, while HIV negative men are more doubtful about its effectiveness, which indicates a need for more debate and education in this area.

This presentation was a good entryway to the next topic, “Anticipated risk compensation with pre-exposure prophylaxis among North American men who have sex with men using an Internet social network,” by Douglas Krakower. Mr Krakower presented the results of a survey conducted with North American men who were part of an Internet social network for men who have sex with men (MSM). The study sought out to assess whether condom use would decrease with PrEP, after the iPrEx study results were released, demonstrating that PrEP can reduce the incidence of HIV among MSM.

There were 5,035 men participating in the study; most of the participants were White and self-reported as homosexual/gay. Among the findings of the survey are:

·   Many respondents reported high-risk behaviors but the average self-perception of risk was low to moderate.

·   Awareness of PrEP was modest and prior use was rare; half of the participants indicated interest in using daily oral PrEP.


·   20% of the participants anticipated decrease in condom use for insertive anal sex while on PrEP, while 14% indicated the same for receptive anal sex.


·   Unprotected anal sex with prior drug/alcohol abuse was associated with anticipated decrease in condom use for insertive anal sex.

The survey results indicate that while there is an interest in PrEP, there is also a need to implement interventions to minimize risk compensation.

It is not over yet. PrEP is definitively a great advance in the fight against HIV, but measures must be taken so that it is not seen as a “magic pill,” but as another weapon to win the battle. We have to make sure that we do not regress, that there is not a new wave of infections. To do so would be like starting over.

A Call to Action to Turn The Tide Together

What do you get when a group of inspiring, passionate speakers talk about an issue such as HIV/AIDS? I don’t know about you, but I got goose bumps, tears, and a high dose of optimism. That is what I got at the Plenary Session today at the XIX International AIDS Conference.

Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes of Health (NIH) gave a powerful presentation, Ending the HIV Epidemic: From Scientific Advances to Public Health Implementation; he had such energy that it kept me waiting for his very next word. 

            Dr. Fauci pointed to advances, such as the availability of more than 30-FDA approved antiretroviral medications, and an increased life expectancy for those with HIV. He said, however, that the United States alone has a good percentage of people that have not been diagnosed, and many others that are not linked to care. 

            So what are the challenges to ending this epidemic? Dr. Fauci said it – this will not happen spontaneously.  To get there, he said, we need:

-       Country ownership

-       Capacity building

-       Health systems strengthening

-       Increased commitment by current partners

-       Involvement of new partners

-       Coordination

-       Getting rid of what doesn't work and focus on what works

-       Remove legal, political and stigma barriers

Only then, he said, will we be able to say that we are the generation that opened the door to have an AIDS Free Generation.

            OK, by now I was already in tears…but there was more. The next speaker, Mr. Phill Wilson, President and CEO of the Black AIDS Institute, brought the message closer to home with his presentation Deciding Moment: Ending the AIDS Epidemic in America Together.  Mr. Wilson made it clear that in order to conquer this epidemic, all voices need to be included. He referred to the AIDS epidemic in America as “a tale of two cities,” in which the system works well for some but is terribly broken down for others.

            Mr. Wilson spoke about President Barack Obama’s National HIV/AIDS Strategy and mentioned 5 key points that need to happen to end the AIDS epidemic:

1) Implement Affordable Care Act and fight any efforts to roll it back;

2) People with HIV must come out; let it be know that it is possible to live a full and healthy life with HIV;

3) Put a demand on treatment; if there is not a demand, there will be no effort to build it

4) Integrate behavioral interventions with biomedical interventions; they need to be connected together in order to be effective.

5) AIDS organizations must re-tool to deal with current AIDS landscape by incorporating biomedical interventions to their behavioral interventions.

Mr. Wilson made two powerful statements that once again made me cry (¡sí, soy una llorona!). First he said that he was alive today because he had the love and support of his family and friends.  And then he ended up his presentation with the following statement: “Together we are greater than AIDS!”

            My status at this time: makeup ruined, red nosed, but so inspired! And what came next topped it all: Secretary of State Hillary Rodham Clinton with the Keynote address. “I’m here to set a goal for a generation that is free of AIDS,” said Secretary Clinton, followed by “Welcome to the United States,” something that had not been said in 23 years due to a United States’ HIV-travel ban.

            I have to be honest; I forgot about my note-taking task and was just taken by Secretary Clinton’s words. Secretary Clinton shared a personal anecdote. She recalled visiting the AIDS Memorial Quilt in 1996 (link here)\ with President Clinton and requesting to see the panels that had names of friends she had lost to AIDS.  She called the moment devastating when she saw how enormous the AIDS Memorial Quilt was.  The quilt has not been displayed together that year; it had gotten too big, too many people kept dying; too many panels kept being added. 

Secretary Clinton urged the audience to be encouraged and inspired by what has been done so far. She made a call to restore the faith, to renew our purpose, so that when we finally reach that goal, “we can truly honor those who have been lost.”

And I cried some more. I cried for José Luis, for Salvador, for Miguel. I cried for Fernando, for Señor Aguirre, for Heriberto, for Aisha, for Randolfo. Some tears were for Armando, and some were for Gustavo, for Pablito and for Jonathan, and Ellen, Tita, Martha and Wanda. But there were new tears of hope knowing that we are closer than ever to a world without AIDS.

            Follow me at http://ilemanda.blogspot.com/, and in Twitter: @ilemanda

Calendars don't lie

I like to keep my calendars.  To me, they are like natural journals that help you keep track of your daily life.  In calendars you are spontaneous; in journals you tend to think a bit too much. So, to me, calendars sometimes tell a better story.  Take my calendar for this week, for example:

7/20 – Travel to Washington, D.C. for XIX International AIDS Conference

7/21 – Embajadores Training – 8:30 a.m. to 5:00 p.m.

7/22 – Latino/Hispanic HIV Community Research Forum

7/23 – NGO Reception

7/24 – Nuestra Noche de Acción reception

Additionally, I have my blogging assignments for the conference, something I’m very excited about.

Last year’s calendar is filled with meetings for the United States Conference on AIDS, for which I was a Committee Co-Chair.  If you look at my 2005 calendar, you will see my homework assignments deadlines as I completed my Master’s degree.  And, like I said, my life could be put together through my calendars.

Recently I found my calendar from 1994.  It was a pleasant surprise to read through it, but it also made me cry at times, as I remembered events that while I have not forgotten them are not present in my consciousness all of the time.  Some things have not changed: there are the deadlines for the United Way, Chicago Department of Public Health, Illinois Department of Public Health and AIDS Foundation of Chicago’s grants.  There are the trainings in topics that even now sound very interesting.  There are the dates of the Technical Assistance workshops, the meetings with the CPA for the Public Interest; these two gave me the basic skills for fostering the growth of my organization.

There I found registered the initial meeting with Lori Cannon from Open Hand Chicago (now Vital Bridges) to use CALOR as a distribution center once a month.  I remember those days, the energy of the volunteers that came to help, the passion with which they gave themselves to the task of preparing food bags and then deliver them!  Despite the sadness of seeing so many die, the sense of commitment, the experiences of those years, nothing compares to that.

I also have in my calendar the dates for the support group meetings.  Those were dynamic groups, huge groups of people from all walks of life, different sexual orientations and risk factors; all united by their unique tie: HIV. This was before funding streams segmented groups based on priority populations.   The groups were open to anybody that needed them…and there were a lot of people that needed support back then! We had the most interesting group topics and everybody participated.  Salvador Contreras, one of our founding members, was an excellent facilitator; no special training, just people’s skills and the desire to share his own experiences with others. He came up with the most interesting and some times controversial group topics, but he made people talk during those two hours on Saturday afternoons and this brought us together.

Advocacy meetings are also registered there, meetings with Community Response, Lakefront SRO, San Miguel Apartments, AIDS Legal Council, Social Security Administration and Department of Public Aid.  We had volunteers meetings to help coordinate these activities, to make sure that whoever needed an interpreter had one, or volunteers accompany a person to an appointment; we made sure it all happened.

Unfortunately, my 1994 calendar also serve as a death record.  The first entry in January 1, 1994 is to note the death of Dr. Ron Sable, a great activist for gay rights, and also an attending physician and founder of the Sable/Sherer AIDS Clinic at Cook County Hospital.  And that was the first of many.  On that very same day, José, another friend, died.  And from there on, there is a record of deaths and funerals that to this day takes chokes me up:

4/30/94 – José Luis passed away; a great friend and founding member of CALOR

5/3/94 – José Luis’ funeral services

9/4/94 – Sr. Aguirre passed away

9/7/94 – Sr. Aguirre’s funeral services

10/20/94 – Fernando passed away

10/21/94 – Armando passed away

10/29/94 – Gustavo passed away; another dear friend and founding member of CALOR

12/2/94  – Salvador passed away; my handsome friend; founding member of CALOR

I know this list pales in comparison with other peoples’ losses, those who saw people die much more frequently. But these were my losses, the very first experience with the much darker side of HIV/AIDS, something that no training, no meeting, no support group had prepared me for.

And today, as I continue filling my 2012 calendar with the great activities that will take place at the XIX International AIDS Conference, I remember each one of my lost friends, and I honor their lives and their commitment in those early years.  And I hope that wherever they are, they will rejoice with me when I am able to finally write on write on my calendar: Today a cure has been found.

At the beginning...

When did it happen? I am not sure of the exact date; perhaps I should check my records to make it exact? But, does it really matters if the impact has been the same? We were in class together when he first approached me. His name is Saúl Maravilla. I could have ignored him and continue paying attention to class. But no; I listened to him. I let him lure me with his ideas. I was an eager listener and the excitement of something new got a hold of me. And without much hesitation I said yes. And that is how C.A.L.O.R. came to my location.  

            C.A.LO.R. (Comprensión y Apoyo a Latinos en Oposición al Retrovirus) came as a direct response to the lack of culturally and linguistically appropriate services to Latinos impacted by HIV in the first few years of the epidemic. A group of HIV+ individuals along with committed community members came together to fill the vacuum that existed at that time. At first, it was only a support group but over the years it grew as a result of the expressed needs of the participants. At that time, I had a for-profit business along with Omar N. López. We had a huge loft around Division Street and Damen Avenue in Chicago with plenty of space available, and so it was easy for us to say yes to the idea of having this group meet at our location.

            I remember the first group sessions I attended. I was mostly lost, not having a clear understanding of what was happening and of what impact this epidemic would have in our community.  I do remember there was not yet much talk about HIV or about dying. Most of it was about needing assistance to apply for Social Security, public aid, or some other type of benefit. “Who can go with me? I need translation.” There was a general sense of brotherhood, of everybody being together in the same situation. And everybody seemed to understand except me, because I was not clear on what was happening.

            Back in my hometown of Arecibo, Puerto Rico, nobody I knew had HIV; nobody had died of complications of AIDS. In retrospect, I can see it was already happening, just that nobody was talking about it. There was the guy that died of encephalitis, but that through a hospital worker we found out that it was “that new disease.” This was prior to regulations that prohibited disclosure of health-care information; people with access to medical records talked about it. As a young summer intern at the Hospital Regional de Arecibo, I had access to medical records and found out about my uncle’s battle with cancer way before anybody in the family knew about it. But that is another story.  

            There was also the death of one of the neighborhood guys who used drugs intravenously and his wife’s subsequent illness. Nobody said it out loud, but everybody said they were “sick with that new illness.” This was in 1986 and I moved to Chicago in 1987, and that was the extent of my contact with HIV. Of course, Magic Johnson’s announcement came a couple years later, but I was not a basketball fan, so it did not shock me as it shocked the rest of the world. HIV was still not a reality in my mind.

            It was that training, my very first training about HIV. I think the training was at Stop AIDS Chicago. It was also Saúl who pushed me to go to that training which was about women and HIV. Now, that really shocked me. I learned about HIV and women specifically, about how it impacted us, about the rising numbers of infections among women. That did it. I was alarmed, sad and scared, but also determined to do something about it. I was determined to continue learning and to dedicate myself to this matter.

            And so I did. With the help of others, we created a skeleton volunteer structure to accompany people to medical and social service-related appointments. We incorporated the organization with the State of Illinois and began to look at opportunities for funding. And most importantly, we kept our Saturday support groups going; this is where our friends, our family came together to share their experiences, to share their fears and frustrations about dealing with their new reality, to give each other encouragement and support.

            And I still did not know much. It still had not impacted me personally…but not for much longer. My life was about to change in ways that I had never imagined. The following months and years were filled with many visits to hospitals, with helping dear friends with their medications, with loss and visits to funeral homes. It was also filled, alternatively, with the desire to do something different because I was not sure I could continue coping with the frequent loss, and with the renewed desire to continue doing more. That was 21 years ago…and here I still am, and there is still much more to be done.

            I will tell you about those early years in my next blog. Meanwhile, share with me: how was your first experience with HIV? How and why did you get involved?  I look forward to reading your experiences!

Rosa