CAB Member, Vanderbilt CRS, Nashville, TN, USA
I started working in the lab with the old AIDS Vaccine Evaluation Group in March of 1992 under the leadership of Dr. Barney Graham and Dr. Peter Wright. The AVEG later became the HVTN. Other leadership has included Dr. Paul Spearman, Dr. Spyros Kalams, and Dr. Greg Wilson.
My role in the lab was to process specimens from the clinic. Over the years this included extracting PBMCs (white blood cells), processing serum, saliva, semen, and cervical and rectal washes, for example. I was also responsible for shipping specimens to the HVTN Core labs and to the specimen repository, ordering supplies, doing routine maintenance and cleaning of equipment, defrosting freezers, etc. – not fun jobs, but vital to the performance of the lab. Being error-free is vital to the success of the Network.
I felt that I couldn’t expect our participants to be involved if I wasn’t willing too. I had wanted to be a participant in one of the trials. My husband was pretty old-school and didn’t want me to be a study participant – fear born from ignorance! So, I waited until after his death to enroll. I was one of the first two enrollees in HVTN 032*, which lasted for 18 months. It was informative to me to see how the clinic staff conducted “business” – so professional! This particular study involved injections in both arms and at least thirty tubes of blood drawn, which was done as painlessly as possible. I was pampered and was able to get the good juice to drink. The clinic staff have changed over the years, but they always put the participants first. I would have been willing to do another study, but I received the study vaccine, not the placebo, so I wasn’t eligible. What I could do though, was get involved with the CAB. I was interested in the CAB almost from the beginning.
Later, at an HVTN meeting in Seattle, where I was scheduled to give a talk to laboratory personnel about how to conduct error-free shipping, it was suggested that I attend the CAB sessions happening during the meeting. I was so impressed with Mark Hubbard (Vanderbilt CAB member) and the work that was being done that I decided to become a member of our local CAB. So began my 20+ years of serving on the Vanderbilt CAB.
I have learned so much being on the CAB, especially about the stigma that people living with HIV have to deal with on a daily basis, and how having an HIV diagnosis affects their health. In turn, I have been able to interact with my community of friends and answer questions and impart what knowledge I have.
CAB engagement in the community is vital, and trial sites are held accountable by their CABs. This is why it is so important for each of us to read consent forms for new trials. Safety for trial participants is of the upmost importance, and it is our job to do too. Community engagement at events like the AIDS Walk should always have CAB members involved. We have a story to tell and can help identify new study participants to enroll. CAB members and research staff are responsible for the implementation and launch of studies, and the conduct and closure of these studies.
For our CAB, we need to broaden the diversity in our membership, and continue to have a strong commitment to the goals of our CAB. Working together, vaccine advocates and researchers can expand the status quo. An example is advocating for PrEP. We need to be prepared to answer questions from the community such as:
- How are trials conducted?
- What are the eligibility requirements?
*Policies have changed since this study, and employees are no longer allowed to be participants in our studies.
Dr. Martin Casapia Morales
Site Leader of the Association Civil Selva Amazónica CRS, Iquitos, Peru
Seventeen years ago there were many cases of HIV in Iquitos, Peru, and very little information on prevention and treatment. Although the HIV incidence has not changed much in Iquitos, there is hope that prevention and research will yield concrete results.
Association Civil Selva Amazónica (ACSA) wanted to contribute to the health of the population of the Loreto region, specifically with infectious diseases and particularly HIV infection control and prevention. For that reason, Dr. Martin Casapía Morales, Principal Investigator of ACSA, developed a local research site to implement studies that contribute information to prevent HIV infection. The site also supports the efforts of Dr. Jorge Sanchez, who leads a research center in Lima.
The first study we conducted was preparatory to assess the incidence of HIV locally, given the high number of cases reported in Iquitos which represented a significant public health problem. In this preparatory study, we demonstrated that we were able to meet people and enroll them in a research study. This was important because Iquitos has the third largest number of new HIV cases in Peru, following Lima and Callao.
With formal training as a specialist in infectious and tropical diseases, Dr. Martin Casapía Morales has held the roles of Investigator of Record and Principal Investigator, and is now the Clinical Research Site Leader. The ACSA site started by conducting basic studies with small numbers of participants, but today it manages studies with 300 to 600 participants in different clinical trials.
Dr. Martin Casapia Morales started working as a general practitioner in Iquitos, initially seeing patients with HIV at the Hospital Cayetano Heredia in Lima. From there, he gained experience in the management of these patients and then ventured into HIV prevention. Dr. Casapia Morales believes, “Patients should not die, because we have the tools to detect and treat HIV early.”
Working with the HVTN is a great experience because it is an organized, systematic way to develop and implement clinical trials. "The Network has given me a number of opportunities to learn a lot in the clinical trial field. In addition, I recognize that we have the opportunity to interact and learn about new research experiences with diverse researchers, including those who direct the Network, and receive permanent contributions from them, which gives us security for good development in our work," he emphasized.
HVTN Director of Communications, Seattle, Washington, USA
My decision to join the HVTN was inspired by the need to serve with significance. In my country of birth, South Africa, there is a saying, “umuntu ngumuntu ngabantu”. Translated, this saying means a person is a person through or because of other people, or that you are who you are because of how you relate to others around you. Serving communities with significance, in my opinion, is about making time to see the world through their eyes. In my role at the HVTN, I serve the information needs of global communities and the media about the journey to find a safe and effective HIV vaccine.
My professional journey began as a communication and reputation strategist in corporate South Africa. Teaching media and communication management to undergraduate students was one of my most rewarding experiences. After one year of teaching I joined the second tier of South Africa’s government as a “fixer” and political communication strategist. The opportunity catapulted my career into global communications when I led the communication strategy for shale gas extraction for the Western Cape Government, and served on the FIFA World Cup Crisis Communications team.
My exposure to the field of medical research started in December 2013 when I accepted the responsibility of rebranding South Africa’s premier medical research organization, the South African Medical Research Council (SAMRC). Through the eyes of many leading researchers and investigators, I came to understand the information needs of communities and stakeholders for more than 12 research priority areas such as non-communicable diseases; communicable diseases; gender-based violence; violence, peace, and injuries; health systems; tuberculosis; and stress and anxiety disorders, among others.
I have a consistent observation that every chapter of my career has afforded me the opportunity to serve the information needs of a diverse audience. To me, serving with significance means placing people at the heart of each communication strategy and plan. Being in service to the HVTN is ultimately being in service to each study participant, their communities, and all stakeholders who make the search for a safe and effective HIV vaccine possible.
The HVTN is not only about changing lives, it is a game-changing network. This is a brand that inspires hope!
Conference & Events Manager, HVTN Core, Seattle, WA, USA
My first connection to HVTN was about 19 years ago when I enrolled in a study at the Seattle HVTU.
Seven and a half years ago I was looking for a new job. My partner was Gail Broder’s hairdresser and they got to talking about my work experience - the rest is history. A few weeks later I was hired as an HVTN Travel Coordinator. Five years ago, I took on the role of Conference & Events Manager and I love its challenges. I often boast about the teamwork that goes on within our network. I’m proud to support the efforts to find a vaccine for HIV.
Shawn Demmons, MPH
CAG Member, Bridge HIV CRS San Francisco, CA, USA
HVTN Global Community Advisory Board Representative to the Transgender Working Group Capacity Building and Assistance Provider, UCSF Center of Excellence for Transgender Health.
When the HIV/AIDS crisis emerged in the early 1980s, there was little education available about the disease except that death was certain and imminent if you acquired the virus. In the early 1990s, that’s exactly what started happening to the guys in my circle of friends. It really hit home for me when my good friend Emmett, seemingly out of nowhere, died from AIDS-related complications. Stigma and shame prevented Emmett from telling any of us he was sick or letting us support him. A few years after his death, I attended a conference where I learned about HIV treatment. This motivated me to become an HIV treatment advocate. Unfortunately, by then Tweety had died, Kevin and Derrick were very sick, and my other gay friends remained at risk. That was the impetus for my work in HIV treatment and prevention. Throughout my career I’ve worked with people affected by and living with HIV in various capacities.
In 2017, I was recruited to join the Bridge HIV Community Advisory Group (CAG). As a Black trans man and a public health professional, I know the importance of including the voices of marginalized communities in research. Transgender people are grossly underrepresented in research across illnesses, and it’s important to me that this change. Sharing my expertise in trans health and community organizing to inform HVTN research studies is one way toward that end. I believe the first step to inclusion of trans people in research is education. As a CAG member, I’ve had the opportunity to participate on panels, present at community forums, and provide technical assistance to research scientists about the HIV prevention needs of transgender people. But my absolute favorite thing about being a CAG member is being able to share accurate up-to-date information about things like PrEP and U=U (Undetectable = Untransmittable) with ordinary people in everyday situations.
José Luis Castro Chuquillanqui
Community Educator, VIA LIBRE CRS, Lima, Perú
In the decade of the 90's and the beginning of 2000, my life changed significantly, but I didn’t understand why. Little by little I was losing friends from my very close environment, victims of AIDS. An epidemic had arrived in Peru without warning in 1983.
My life, and those of many of our generation, were dying or in mourning at every moment. We began to schedule constant visits to hospitals, homes, to see friends who were consumed by the terrible evil, which at that time was impossible to think of a treatment that could calm the anguish and pain that invaded us.
I remember clearly the constant meetings of friends, where the issue of AIDS was entering our conversations, but we were unable to do anything. I also remember the unexpected telephone calls announcing the death of a friend or acquaintance. I remember the wakes, funerals, masses and visits to cemeteries. I remember our cries, our helplessness, our anger, our despair, our life planning. I always remember Leo, Ronald, Carlos, Víctor, Raiza, Pedro, Paco, Jesús, Juan, and many other friends who died of AIDS complications.
In the face of such impotence, I felt the need to be able to do something that could make me feel good. I inquired, I searched, I asked; and that's how I came to VIA LIBRE. In 2002 I joined the volunteer program that VIA LIBRE had. I had the opportunity to learn more about AIDS. I participated in various information campaigns. VIA LIBRE became my second home. It was the space from which I could feel relief, and be able to do something in the face of so much misinformation that existed at that time about AIDS.
Later, I was invited to participate in projects of political advocacy, prevention and human rights that VIA LIBRE implemented. I felt good, grateful, and satisfied to work on a topic that impacted me. I felt welcomed, and a feeling of being able to always help friends and the community about the new advances that had been taking place regarding HIV infection.
I went to other institutions also working on HIV. It was the issue I had decided to work on, with no doubt. In 2015, VIA LIBRE summoned me and proposed that I be part of the research center, in the position of Community Educator for the AMP Study. A new challenge came into my life, which I assumed with a lot of commitment. Being in research allows me to have a more comprehensive view of the epidemic. Being involved means I can be a part of new alternatives in the prevention of HIV, I can contribute to science, I can have hope, and in some way, I can repay what I could not do at the time with the friends I lost.
In parallel, in 2014 I formed a community group in my area. Casa Diversa, an organization that brings together volunteers from LGTBI communities, works to make our sexual orientations and identities visible, and works with civil society and state organizations to expand access to social services and integral health care, with a focus on respect, inclusion and human rights.
Project Manager, HVTN Core, Cape Town, South Africa
I grew up in Nairobi, Kenya, surrounded by medical researchers and academics, and at the age of 18 got my first experience working in clinical research. Coming into my own, fueled by my love for chemistry, and wanting to make a difference in people’s lives, I decided to study pharmacology. It was during my ‘gig’ doing data entry at 18 and later working as a hospital pharmacist that I first encountered the devastation caused by HIV: it was heart-breaking. I couldn’t believe that one day I’d be chatting with one of my patients, and the next day they’d be gone.
I knew from early on that I wanted to go the clinical research route after obtaining my B. Pharm. degree. I also quickly came to learn that my niche was in quality management of clinical research. I left pharmacy practice and was soon involved in numerous trials for TB (treatment studies), malaria (vaccine studies) and HIV (treatment, prevention, and vaccine studies) as a quality monitor (ah yes, I’ll admit that perhaps I have Obsessive Compulsive Disorder!). It was the exposure to monitoring NIH-funded HIV studies that brought me to the HVTN, where I support the Africa Programmes Director (Dr. Glenda Gray) in matters of clinical operations, particularly on 2 large trials - HVTN 702 and HVTN 705/HPX2008. It is humbling that I’m now involved in projects that could help prevent the devastation that HIV brings with it.
I love the fact that I work with very supportive colleagues (especially since my role is ever-evolving), whose common goal is to see the success of our vaccine trials.
Clinical Site Coordinator and CER, CHUV CRS, Lausanne, Switzerland
In 1995, with a degree in biochemistry in my pocket from Trinity College Dublin, I jumped at the opportunity to spread my wings and took up a position in pre-clinical research at one of the ‘big-pharma’ in Switzerland. I quickly realized that (a) there is more to Switzerland than chocolate, watches, and mountains, and (b) life in the lab really was not for me. Soon after I found my first position in clinical operations and can truly say that I found my niche. My first encounter with HIV was circa 1997 when I started working on numerous clinical trials, many of which ultimately gave rise to some of the antiretroviral therapies in use today. Following a period working mainly on oncology trials for a bio-pharmaceutical company, I decided a change was in order and in April 2018, I had the opportunity to come to work at the university hospital in Lausanne (the CHUV) and take up the position of Study Manager at the Vaccine and Immunotherapy Center. This was my first experience working with the HVTN. In terms of HVTN studies, my role is Clinical Site Coordinator and also the Community Educator-Recruiter. Being a relatively recent addition to the Lausanne site, I am progressively getting to know the CAB and gaining a better understanding of my role vis-à-vis the community. The Lausanne CAB is composed of individuals with diverse backgrounds, all deeply committed to the prevention of HIV and who have been instrumental in educating me on the current culture and public opinion in Switzerland and the challenges we face.
From a clinical operations perspective working with the HVTN, I cannot help but be impressed by the commitment to quality and excellence; all the systems, processes and procedures have been shaped and guided by GCP and every operational aspect of a protocol has a corresponding, well thought through practical application.
Rochester Victory Alliance CRS,
Rochester, NY, USA
I was introduced to HIV and the surrounding prevention work at an early age as a peer youth advocate for the MOCHA Center, an organization focused on supporting LGBT youth of color in Rochester, NY. I learned about the devastating impact the disease was having on my community, and how community engagement activities are critical to providing education and tools to those who need it most.
When I first learned of my own HIV diagnosis in 2015, it lit a fire within me. I wanted to turn my diagnosis into something positive. In 2016, I joined the Community Education & Recruitment team at the Rochester Victory Alliance, where it has been my mission to not only recruit new study volunteers but also educate people from all backgrounds about HIV prevention research.
Recently, I played an integral role in the University of Rochester Artist in Residence Project. This project aims to break the cycle of stigma surrounding HIV and to foster awareness through a series of watercolor portraits (of folks within our local HIV community), painted by our Artist in Residence. As part of the project, a short documentary was created about the process entitled, “Don’t Define Me”, where I shared my story of being an African American trans woman living with HIV.
Being a part of the HVTN feels like belonging to a big family of superheroes from different walks of life all around the world. From Africa to South America to cities all over the USA, we are all doing the hard work of engaging our communities toward a common goal. I’m proud to be a part of that. In addition to my work with the HVTN, I am also a Community Health Specialist with the MOCHA Center.
Maria del Rosario Leon Rhandomy
Head of Community Involvement, IMPACTA CRSs, Lima, Peru
I have worked in the field of HIV for more than fifteen years. I graduated from Universidad de Lima, where I received a Bachelor of Social Communication degree and later completed a Master in Social Investment from Universidad del Pacifico (Peru). I worked in the National HIV Program of Peru as Head of the Information, Education and Communication unit in the implementation of behavioral interventions. My goal: people should be educated about HIV prevention.
However, it was clear that condom use was not enough and we need to work on new prevention strategies. In 2005, I worked as Community Educator at IMPACTA, on my first HIV vaccine trial, and also served as HVTN CER Co-Chair for the North and South America sites. Since 2007, I was the Community Educator for the Lima sites in the iPrEx trial on pre-exposure prophylaxis, where I designed the branding for the Andean sites, as well as community involvement, recruitment and retention strategies that contributed to the trial achievements. Since 2016, I am working on the AMP study.
One of the things that I appreciate the most about working with the HVTN is the permanent respect about education and community involvement efforts. These include: putting in action the Community Advisory Board recommendations, implementation of new strategies on recruitment of participants, as well as educational materials customization. Now, we continue contributing to the generation of science evidence in health and “the force is with us” (Yes! I am a Star Wars groupie. Alias: MaR Leia or Vader).
CRS Coordinator, Soweto Bara CRS Soweto, South Africa
I have more than a decade of nursing experience both in a clinical setting and a research setting. My work in HIV clinical care doing nurse-initiated management of antiretroviral therapy (NIMART) prompted my interest in HIV research, particularly HIV prevention. Treating an ever-increasing population of HIV-infected people highlighted to me that antiretroviral therapy alone could not halt the epidemic in South Africa. I wanted to increase my knowledge and skills in the area of prevention and this led me to apply for the position of research nurse at the HIV Vaccine Trials Network (HVTN) Clinical Research Site (CRS) of the Perinatal HIV Research Unit (PHRU).
Mostly I love that I am part of the team that is working to make HIV history globally. “If you want to make history, you have to do historic things.” (Kobe Bryant). HVTN’s mission is to fully characterize the safety, immunogenicity and efficacy of HIV vaccine candidates with the goal of developing, as rapidly as possible, a safe, effective vaccine for prevention of HIV infection globally. This mission shows that it is evident that innovative and new methodologies are required for prevention of HIV/AIDS epidemic. Working on HVTN studies gave me an opportunity to increase my knowledge and skills in the development of a safe, effective methodology through preventive vaccine trials.
HVTN allows interaction, such as monthly protocol conference calls, clinic coordinators calls, and conferences, and through this interaction you learn and grow. Being part of this supportive team is awesome.
I would be remiss if I did not share that I was one of the primary research nurses on the novel HVTN 915 study that assessed the feasibility of using daily vaginal swabs to identify HIV exposure. These experiences provided me with the opportunity to learn all aspects of clinical trial implementation and it was for this reason that I was chosen to attend a study coordinator training course in August 2015. Thank you to HVTN for giving the Soweto-Bara team this opportunity. HVTN is indeed the vessel of opportunities and learning. This is where you meet the world’s greatest!
Community Engagement and Recruitment Team (CERT) Program Coordinator, Emory Hope Clinic CRS, Decatur, GA, USA
I became involved in the END HIV agenda as a result of the frequently heard statement, “MSM populations are difficult to find. ” From this, I created a magazine named UrbanSocialites that celebrated Black gay culture. At that time, much of the HIV/STI awareness activities conducted in my area was centered around a heteronormative Rap music publication that didn’t speak about the experiences of Black gay culture, and thus was not reaching a greater population of gay individuals. I began attending Community Advisory Board meetings at the Emory Hope Clinic site to bring awareness about the publication, and with my marketing experience I offered assistance with reaching MSM. Sometime later, I was hired by Mercy Care as their Health Promotion Specialist which began my formal work within public health, and then later I was hired by Emory Hope Clinic. HVTN has a coordinated agenda that helps to establish the best practices to engage the community. We meet regularly to better improve on the strategies and systems we use to educate and recruit populations into HIV prevention research. As part of the HVTN, the CERT of Emory Hope Clinic receives additional capacity building, support, and training for best outcomes. In addition, the Network allows flexibility to use non-traditional methods to engage communities.
Community Engagement Coordinator, Vanderbilt CRS Nashville, TN, USA
Around 2016 when I was working in corporate America doing logistics for a shipping company, I found myself working and living without a purpose. I would go to work and do my 9 to 5 but come home miserable and repeat the same patterns every day. HIV research became an area of interest to me when I attended my first Nashville AIDS Walk and met former Community Educator Vic Sorrell. We had a deep conversation that day about all the work that goes on in the community and throughout the world regarding HIV/AIDS. I became involved the following year and started working for the Vanderbilt HIV Vaccine Program, where I met a wonderful community of CAB members, nurses, physicians, activists, researchers, PLWHA and most importantly our study participants. I knew that my role would be more than just working in an office setting and talking to patients, but getting to know these individuals and their stories. This work is not about me but for the greater good of humanity and finding resources to help end the epidemic. We must start educating and having more uncomfortable conversations with our peers as well as ourselves. What I love about working with the HVTN community is that you get to meet so many people who are willing to sacrifice their time and energy for a noble cause; these participants and community leaders genuinely care about the work and it shows. I truly feel that all of us have a mission while we are here on Earth. This mission can be identified as a charge and responsibility to pull the next generation up behind you.