• Nurse Values Learning from Colleagues

    January 1, 1970 pendari Uncategorized

    Miriam Chicurel-Bayard, RN, credits her colleagues with enhancing her career and allowing her to focus on patient care. For the past four years, she has worked as a research nurse at the AIDS Clinical Trials Group (ACTG) Network’s University of North Carolina (UNC) Clinical Research Site in Chapel Hill. Chicurel-Bayard sees study participants, running any tests required for the trial and making sure patients are not adversely affected by the protocol.

    “Thankfully, I benefit from the skills of highly specialized co-workers who manage all the regulatory tasks so I am able to focus on seeing patients for study visits and helping to coordinate their clinical care,” says Chicurel-Bayard. “HIV research is a very exciting field, filled with folks who are passionate about their work and care deeply about the patients they serve. I value the opportunity to learn from my many compassionate co-workers.”

    A desire to take care of people motivated Chicurel-Bayard to attend nursing school at UNC. Prior to attending nursing school, she had her first taste of research working in Columbia University Medical Center’s Psychiatry Department with substance abusers in New York City. This experience prompted her to look for jobs in research with marginalized populations upon graduation.

    “In all of my jobs, I have been able to work with populations who are often overlooked and suffer from stigma,” says Chicurel-Bayard. “I feel fulfilled by the relationships I build with patients over time and am continually amazed and honored by the trust they put in me and our team.”

    David Currin, RN, A.C.R.N., C.C.R.C., has worked closely with Chicurel-Bayard since she joined the UNC site and says she has been instrumental in implementing the site’s use of a new clinical research patient management system.

    “I can always count on Miriam to be a great team player,” Currin says. “Her skills as a coordinator are impeccable, and her people skills translate into happy and satisfied study participants. Miriam took the lead when we rolled out EPIC at UNC, and was instrumental in problem solving how research was to be integrated into EPIC. It is a joy working with Miriam!”

    Chicurel-Bayard coordinates multiple clinical trials at the UNC site for research networks including the ACTG as well as industry studies. She says the first ACTG study she worked on involved developing creative ways to attract participants to the trial. She has noticed many of her young, male patients find staying in care difficult. She says patients from rural areas travel to the clinic to avoid the stigma they may face seeking care closer to home. From outreach strategies to study visits, Chicurel-Bayard says each moment at the site has reaffirmed her professional decision to become a research nurse.

    “I love the cerebral component of my job, which feeds my natural curiosity and love of science,” she says. “In addition to empowering our patients to contribute to the future of HIV treatment, I hope that participating in clinical trials gives them an edge in navigating the health care system, which can be so daunting.”

    Susan Blevins, RN, MS, ANP-C, works as an adult nurse practitioner with Chicurel-Bayard at the UNC ACTG site.

    “Miriam is such an asset to our group,” says Blevins. “She has an incredible ability to explain very complicated studies and concepts to prospective research participants. She brings to her job an intellect and a creative energy that powers her skill to coordinate some of the most difficult protocols and to develop different strategies to recruit and retain study participants. Her genuine interest in her patients does not stop after a study visit is completed. She makes sure that they stay connected with their HIV clinical providers and is often overheard on the phone linking patients with unmet financial needs with available community resources.”

    Chicurel-Bayard hopes future ACTG studies focus on how having a chronic infection takes a toll on the body as well as cure research. She remains excited to be a part of the UNC ACTG team and continues to grow as a nurse.

    “I am overwhelmed by the generosity and exceptional care that I witness from the physicians, nurse practitioners and physician assistants I work with,” Chicurel-Bayard says. “Without a doubt, they are the most caring and considerate providers I have ever been honored to collaborate with. I am inspired every day by their commitment to their patients and to the research that improves patient care.”

    When she is not working at the UNC site, Chicurel-Bayard enjoys many creative outlets including throwing pottery and designing jewelry. She also sings in a band that is about to release their third album.

     

  • Spotlight on Ilene Wiggins

    January 1, 1970 pendari Uncategorized

    Prison inmates. Burn victims. Terminally ill children. These are just a few of the types of patients Ilene Wiggins, RN, has treated during her career as a nurse in Baltimore. Caring for these patients can be emotionally taxing, but Wiggins says she felt it was her calling.

    “I felt I had a gift for making people feel better, not with medication or task, but with caring, compassion and honesty,” Wiggins says. “To make someone smile on what may be one of the worst days of their lives is an accomplishment.”

    Men and women living with HIV in Baltimore is the patient population Wiggins has served the most over the years. From 1992-1994, she visited the city’s prisons, enrolling inmates in the AIDS Clinical Trials Group (ACTG) Network’s Johns Hopkins University site’s HIV studies. In 2003, she became the study coordinator for the ACTG’s Johns Hopkins site, a role she has held ever since.

    “I witnessed firsthand the medical hysteria when HIV was named and how people were initially treated when they had it,” Wiggins says. “I witnessed the devastation caused by the additional years it took to safeguard the blood supply and transfusions. When presented with the opportunity to become a researcher, I took it after I thought about the whole ‘guinea pig’ question. I had to make sure I wasn’t doing that to people and I figured being on the inside of developing these research studies would ensure that.”

    Charles Flexner, MD, leads the Johns Hopkins University Clinical Research Site.

    “Ilene sets high standards for herself and expects the same from the people around her,” Flexner says. “She has a terrific perspective on the research process. She knows how to gain the interest of study participants and keep them enrolled in trials.”

    Dorcas Baker, RN, is the Site Director for the Pennsylvania and Mid-Atlantic AIDS Education and Training Center. However before she took this position, she worked for 14 years with Wiggins as a research nurse at the ACTG Johns Hopkins site.

    “She was a great person to work with and a dedicated research nurse,” says Baker. “What I loved most about Ilene, was that she did everything with excellence…paid attention to details and rarely missed anything. Our work relationship evolved into a lasting friendship as well.”

    Wiggins has served as a field representative on three ACTG studies. Field representatives do not develop the studies, but they do give input to make the study run smoothly and help the protocol team with study implementation at the site level. For example, a field representative would read over the proposed summary of tasks to be completed during a participant’s study visit and give feedback as to whether or not this list is feasible. She is hopeful future studies focus on a cure.

    “We have accomplished making HIV a chronic disease, but I’d like to see us working toward a cure,” Wiggins says. “I would like to see us accomplish eradication just as we are approaching with the hepatitis C virus.”

    When she is not working at the ACTG Johns Hopkins site, Wiggins enjoys writing poetry and shadow boxing African art.

  • Researcher Tackles TB in India

    January 1, 1970 pendari Uncategorized

    As a child, Amita Gupta, MD, witnessed infectious diseases firsthand while visiting extended family in India.

    “I spent summers in India and saw the effects of polio, hepatitis B, tuberculosis and malaria,” she says. “Then when I was in college, I was galvanized by the world of HIV activism. I found myself more and more interested in working on HIV, volunteering at AIDS Action and Fenway Health in Boston. I later worked on HIV/AIDS at the Massachusetts Health Department.”

    Once in medical school, Gupta’s interests gravitated toward HIV and global health. She completed her residency at the University of California at San Francisco just when combination antiretroviral therapy (ART) started being prescribed.

    “We noted a marked decrease in admissions at San Francisco General Hospital for opportunistic infections related to HIV,” Gupta says. “I then spent two years at the Centers for Disease Control and Prevention (CDC) working on the Epidemic Intelligence Service and diarrheal disease outbreaks. Wanting to return to an academic university setting and work in India, I landed a wonderful opportunity to work with Dr. Bob Bollinger at Johns Hopkins University in Baltimore. He was leading India’s first phase 3 prevention of mother to child HIV transmission trial also known as the Six Weeks Extended Nevirapine (SWEN) trial.”

    The SWEN trial became the basis for the World Health Organization (WHO) prophylaxis guidance for HIV-exposed breastfed infants. In 2004, Gupta was introduced to two National Institutes of Health (NIH) funded HIV research networks – the AIDS Clinical Trials Group (ACTG) Network and the HIV Prevention Trials Network (HPTN). Currently, she is the Co-Principal Investigator for the ACTG’s Baltimore, Washington and India Clinical Trials Unit, which includes sites at Johns Hopkins University in Baltimore, Whitman Walker Health in Washington, D.C., and B.J. Medical College in Pune, India.

    “I teach and mentor medical students, residents and infectious diseases fellows at Johns Hopkins University,” says Gupta. “I also facilitate research and educational experiences for trainees and faculty interested in the research of tuberculosis (TB), HIV and other infectious diseases, particularly in India.”

    Charles Flexner is the Co-Principal Investigator of the ACTG’s Baltimore, Washington and India Clinical Trials Unit.

    “Amita is a charismatic leader who is committed to improving women’s health domestically and internationally,” Flexner says.

    In India, Gupta says the HIV epidemic is concentrated among migrants, truckers, sex workers and injection drug users. Gupta says she has been proud to work on two TB studies at the site. Richard Chaisson, MD, leads the ACTG’s Tuberculosis Transformative Science Group and works at the ACTG Johns Hopkins site with Gupta.

    “Amita has an understanding of TB that is like no other investigator,” says Chaisson. “She knows the disease clinically in unique populations, like pregnant women and children, but she also has a great understanding of the science underlying its pathogenesis and is leading truly translational research to develop better methods for controlling the TB-HIV co-epidemic.”

    To get the word out about the work being done at the B.J. Medical College site in India, Gupta credits the site’s Community Advisory Board or CAB. Each ACTG site has a CAB made up of members of the local community who are infected or affected by HIV. They provide researchers with feedback about studies and educate the local community about the ACTG and HIV.

    “We have an amazing CAB and they are an integral part of our work at the site,” Gupta says. “Our CAB helps us decide what priorities to pursue and helps us determine how to optimize recruitment and retention in ACTG studies.”

    Gupta is also an active researcher with the International Maternal Pediatric Adolescent AIDS Clinical Trials (IMPAACT) group. Her primary research interest with IMPAACT is the tuberculosis and HIV co-infection in pregnant women.

    When she is not working at the ACTG’s Johns Hopkins or B.J. Medical College sites, Gupta enjoys traveling, dancing, watching movies and spending time with family and friends.

  • Researcher Studies HIV and Bone Health

    January 1, 1970 pendari Uncategorized

    By 2015, 50 percent of people living with HIV in the United States will be 50 years old or older according to the Centers for Disease Control and Prevention (CDC).  This is a statistic HIV researcher Roger Bedimo, MD, MS, keeps in mind as he contributes to the AIDS Clinical Trials Group (ACTG) Network’s A5322 study investigating HIV, aging and inflammation.

    “It’s a study whose time had come,” says Bedimo, who is the Clinical Research Site (CRS) Leader at the ACTG’s Trinity Health and Wellness Center site in Dallas, Texas.

    Bedimo grew up in Cameroon and knew at an early age he wanted to specialize in treating infectious diseases. At first he was interested in researching malaria. As he grew older, he noticed HIV was becoming much more prevalent in Cameroon. He then completed an infectious diseases fellowship at the University of Alabama Birmingham. This experience led him to pursue a career as an HIV specialist.

    The Dallas ACTG site opened in 2007 and Bedimo became its CRS Leader in 2011. He says the population most affected by HIV in the Dallas area are young, minority men who have sex with men. Bedimo’s research specialties include the chronic complications a person living with HIV may suffer from such as malignancies, bone disease or cardiovascular disease. He is also interested in the effects of the HIV and hepatitis C virus (HCV) co-infection on the body.

    “People with HIV and HCV are prone to fractures,” he says. “I am chairing a study investigating whether treating HCV would improve bone health in people living with the HIV-HCV co-infection.”

    Pablo Tebas, MD, is the CRS Leader at the ACTG’s Penn Therapeutics Clinical Research Site in Philadelphia. He is working with Bedimo on the HCV bone health study.

    “Working with Roger is always fun,” says Tebas. “You know that you are in for a treat, that you are going to be back and forth frequently discussing the ins and outs of the study.”

    When looking toward the future of HIV research, Bedimo hopes the ACTG focuses on studies exploring antiretroviral therapy and aging. As the AIDS epidemic marks 30 years, many people living with HIV have been taking anti-HIV medications for 10 years or longer. Bedimo thinks understanding the long-term effects of being on ART are critical, especially as people age and face additional ailments. He would also like to see the Network investigate whether an individualized treatment regimen by age would be beneficial.

    “People living with HIV in their 30s may have different tolerability than people in their 60s,” Bedimo says. “As we age, we are at greater risk for developing other complications including cardiovascular disease. These different factors linked to aging need to be taken into account when prescribing antiretroviral therapy.”

    When he is not busy running the Dallas ACTG site, Bedimo unwinds by listening to classical music. He is an avid soccer fan and tried to catch a few of the World Cup games on television this summer. Bedimo returns to Cameroon every other year and hopes to eventually conduct research in his native country.

  • Nurse Believes Research is the Future

    January 1, 1970 pendari Uncategorized

    Vicki Bailey remembers when her lifelong friend confided in her that she was pregnant, but had learned her husband was diagnosed with AIDS. Further tests revealed her friend and her baby did not have the virus. Yet, her friend’s husband lived only another 10 years before passing away. Bailey began nursing school in 1988 with her friend’s story in mind.

    “I wanted to serve exclusively the field of HIV/AIDS,” she says.

    Since 2000, Bailey has worked as a research nurse at the AIDS Clinical Trials Group (ACTG) Network’s Vanderbilt Therapeutics Clinical Research Site in Nashville. She actually started her career at Vanderbilt’s Comprehensive Care Clinic (VCCC) in 1994, caring for people with end-stage HIV. In this setting, Bailey assisted with giving patients infusions, transfusions and coordinating home health and hospice care. When she made the switch to the research site, she said the pace of results was an adjustment.

    “Changing from the VCCC to research was a big learning curve,” Bailey says. “This is very different from the immediate feedback you usually get from giving an individual a transfusion. But after a year I was sold hook, line and sinker. What we do in the ACTG is our future.”

    The population of people living with HIV in Nashville is half African American and half Caucasian, but predominately male at about 75 percent, Bailey says. She sees patients when they come in regularly to the Vanderbilt site for study visits. In this capacity, Bailey logs how study volunteers are responding to the trial regimen.

    Deborah Sutherland, RN, is the Coordinator of the Vanderbilt ACTG site. She calls Bailey an asset to the research being conducted there.

    “Vicki has dedicated many years to the ACTG enrolling participants into numerous research trials,” says Sutherland. “Her participants respect and love her for her expertise, compassion and advocacy.”

     David Haas, MD, is Principal Investigator of the Vanderbilt site. He admires Bailey’s work ethic and taste in music.

    “I’ve known Vicki ever since the mid 1980’s, when she was a ward clerk at the Nashville VA Hospital and I was doing internal medicine residency rotations,” Haas says. “Vicki brings to our workplace an authenticity, an openness and a genuine sense of caring that makes our day-to-day work more enjoyable. She and I also share a love of music including Jack White, Indigo Girls and many others.”

    In addition to treating patients during study visits, Bailey has also served as a field representative on an ACTG trial that explored giving the protease inhibitor class of anti-HIV drugs to people who had stopped responding to the non-nucleoside reverse transcriptase inhibitor class. Field representatives do not develop the studies, but they do give input to make the study run smoothly and help the protocol team with study implementation at the site level. For example, a field representative would read over the proposed summary of tasks to be completed during a participant’s study visit and give feedback as to whether or not this list is feasible.

    “I also enjoy the women’s studies we do and I have asked to be the lead nurse on all the hepatitis C studies that come our way,” Bailey says.

    In addition to the duties at her site, Bailey is serving for a second term on the ACTG’s Network-wide Outreach, Recruitment and Retention (OR&R) subcommittee. This group assists study teams with creating engaging flyers about ACTG trials. OR&R also recently implemented a study participant appreciation photo campaign to mark the Dec. 2 anniversary of the first study volunteer enrolling in an ACTG protocol back in 1986. Bailey volunteered to help publicize this campaign to sites.

    “This was our second year of the study Participant Appreciation Project,” Bailey says. “Budgets prevent many wonderful plans, but it is easy to make some thank you notes or purchase thank you cards at a local store to recognize research participants.”

    The Vanderbilt site was refunded by the National Institutes of Health (NIH) in December 2013 for another seven years of research. Bailey is looking forward to continuing the fight and is hopeful a cure will be discovered.

    “The evolution of HIV research – looking for a vaccine, treatment, prevention, eradication seems a no-brainer in hindsight,” she says. “I hope we focus on eradication and chase HIV out of the reservoirs.”

  • Nurse Researcher Studies Adherence

    January 1, 1970 pendari Uncategorized

    Studies have shown that people living with HIV who regularly take their anti-HIV medications are healthier and less likely to pass the virus to others. Yet many factors, such as side effects and availability of antiretroviral therapy (ART), can influence medication adherence. Patricia Segura, RN, MPH, works at the AIDS Clinical Trials Group (ACTG) Network’s IMPACTA Clinical Trials Unit in Lima, Peru. She is one of the research nurses leading a study to determine the best practices for ensuring adherence.

    “Adherence sounds simple in theory; however, many factors influence a consistent ART regimen,” says Segura. “It is important for Peruvian people who are living with HIV/AIDS, but who have never been on treatment to start a routine they will follow for life. I think this study could give us relevant information to achieving this aim.” 

    The Durability of Adherence in Self-Management of HIV (DASH) Trial or A5250 is being conducted at Segura’s site and the ACTG’s University of California San Diego Antiretroviral Research Center. Treatment naive patients will receive either standard adherence counseling at their site or individualized adherence self-management training. If they receive the individualized plan, they will answer a questionnaire with their answers leading to the creation of their plan. Both groups will check in at weeks four and 12 and, then every 12 weeks for a period of 72 weeks.

    Tari Gilbert, MSN, is a Nurse Practitioner at the ACTG’s University of California San Diego Antiretroviral Research Center. She works with Segura as a nurse researcher on the DASH trial.

    “Patty is one of the most delightful people I’ve had the good fortune to work with during my tenure with ACTG,” Gilbert says. “Not only is she bright, competent, learned and compassionate, she creates a work environment for her staff that encourages them all to do their very best. As a result, their clinic provides exceptional care to a population that is more commonly stigmatized and marginalized within Peru, as it is in many places. I had the good fortune of speaking with participants at IMPACTA, and Patty’s influence was obvious in the care and inclusion that they felt at the clinic. And beyond being a patient champion, she is a champion for nurses as well, which was made clear to me when I met the nurses who provide HIV care in Lima. Her leadership and clinical abilities are an exemplar to me and many others.”

    In addition to being a nurse investigator on the DASH trial, Segura has been the IMPACTA site’s Head of Community Engagement since 2008. In this role, she and her team manage recruitment, retention and community education efforts for not only the ACTG, but also the Microbicide Trials Network (MTN) and the HIV Vaccine Trials Network (HVTN). If recruitment efforts identify someone eligible for a research study, Segura works with IMPACTA clinic staff to schedule appropriate appointments.

    Carrie Schonwald worked for six years at the HVTN as the Community Engagement International Project Manager. In this capacity, she was the key liaison at the network’s core operations center in Seattle for Community Educators at HVTN sites around the world, including Segura’s IMPACTA site.

    “Patricia is a gifted colleague,” says Schonwald. “She cares profoundly about her community, the HIV epidemic and the people who work with her. She is a thoughtful innovator- someone who methodically determines the most creative and comprehensive way to lead her loyal team to reach deeply into their community and engage them in a meaningful way to help fight and eradicate HIV. She is a tremendous asset to the global HIV research community and I feel lucky to have worked with her.”

    Social media has become an electronic tool in the outreach toolbox. Segura manages the IMPACTA site’s institutional Facebook page, research pages and fun Facebook pages. The research pages host information about enrolling studies by population. For example, there is a Facebook page about vaccine research studies for people at high risk for contracting HIV. The fun Facebook pages list the site’s events, like its open house each Thursday, and pay tribute to its study participants with photos of love quilts. Her familiarity with social media makes Segura a good fit for the ACTG’s Outreach, Recruitment and Retention (OR&R) subcommittee.

    Each ACTG site has a group of local volunteers who serve on the site’s Community Advisory Board (CAB). The IMPACTA CAB formed in 2001 and Segura is the site’s CAB Coordinator. She says the CAB’s members represent Lima’s diverse population of people affected or infected by HIV. The CAB provides IMPACTA with feedback on its scientific agenda and research studies.

    “Many of our members have served for as many as 11 years with an average of six years, which demonstrates the commitment and experience of our CAB,” Segura says. “In 2008, CAB members made the decision to increase meeting frequency from once a month to twice a month. This action is a healthy indicator of our CAB’s commitment to ensure community input.”

    Segura thinks future studies should focus on cure research. She says the ACTG is in a position to make the end of AIDS a reality.

    “Since attending my first ACTG annual meeting in 2008, the Network has had a big impact on me,” Segura says. “That was my first opportunity to understand the complexity, but at the same time, the ability of the ACTG leadership to integrate different aspects of research in one place. Relevant researchers, prominent technicians and community leaders working together with the same direction, but different points of view is the expression of what a common dream can inspire among people who are committed to fight the HIV/AIDS epidemic worldwide.”

  • An Advocate for Women with HIV

    January 1, 1970 pendari Uncategorized

    Susan Cohn, MD, MPH, still remembers the stigma surrounding an HIV diagnosis in the early days of the epidemic.

    “I was living in North Carolina and you would hear stories that people hospitalized in Wilmington who had tested positive had a special star affixed to their door,” Cohn says. “People wanted to get into care, but did not want their immediate community to know. So I had patients driving from three hours away to come to the clinic I worked at in Chapel Hill at the University of North Carolina (UNC).”

    Cohn is currently an investigator at the AIDS Clinical Trials Group (ACTG) Network’s Northwestern University Clinical Research Site in Chicago. Her professional interest was originally treating cancer patients. Then her residency took her to an immunodeficiency clinic.

    “I was interested in caring for people who were quite sick and needed a strong doctor-patient relationship,” Cohn says. “When I started treating young people living with HIV, I knew I wanted to support them as they went through this.”

    Cohn was the first AIDS fellow at what was then Boston City Hospital. In 1988, she accepted the position at UNC’s clinic. That is also when she began her research career with ACTG at the Network’s UNC site. She stayed at UNC until 1992 when she moved to the University of Rochester in New York, also an ACTG site. In 2010, she moved to Chicago and took a job at Northwestern. Northwestern is part of a group of several sites that make up the ACTG’s Chicago Clinical Trials Unit (CTU). It was there that she met Kim Scarsi, a research pharmacist within the Chicago CTU.

    “Susan has dedicated her career to advocating for and advancing the science to support issues facing women infected with HIV, ranging from contraception and pregnancy, to gender specific antiretroviral treatment considerations,” says Scarsi. “Importantly, she also advocates for all underrepresented populations, working to find solutions for engaging this critical population in HIV care, clinical trials, and minimizing antiretroviral adherence barriers.  She does this all tirelessly, with a smile on her face, and with complete support and encouragement for new investigators and new ideas.” 

    The populations most affected by HIV in Chicago are men who have sex with men, especially African American men, as well as women. In fact, 25 percent of her patients are women. Treating the infection in women is a focus of Cohn’s research and she is the Co-Chair of the Women’s Health Inter-Network Scientific Committee (WHISC). The WHISC is a joint effort of the ACTG’s researchers and the International Maternal Pediatric Adolescent AIDS Clinical Trials Group (IMPAACT). The committee develops optimal strategies for the prevention and treatment of HIV disease and related complications that are unique to women.

    “In the United States, 25-35 percent of people living with HIV are women, but our domestic study enrollment does not reflect this,” Cohn says. “We need to work hard to enroll enough women in our trials so that the results may be reflective of their participation and the results can be effective for them, too.”

    Cohn says there are many reasons why women shy away from research studies. Some obstacles including busy schedules, childcare issues, a tendency to put the needs of the family first and a lack of education make it tough for them to appreciate the importance of research and the relevance of research to them.

    “I think if we minimized the number of study visits and focused on studies that women can relate to such as contraception research, then we would get women to enroll,” Cohn says.

    Cindy Firnhaber, MD, MS, is an investigator at the ACTG’s University of Witwatersand site in Johannesburg, South Africa. She serves as Vice-Chair of the WHISC with Cohn.

    “Susan has been a pure joy to work with on the WHISC,” says Firnhaber. “She has been instrumental in strengthening the scientific productive of the WHISC in the past years and has navigated the current murky waters of decreased funding support for this agenda with expertise. Her passion, experience and knowledge has kept the women’s scientific agenda on the playing field.”

    Research into a cure for HIV has been highlighted in the news recently, especially after the relapse of the baby in Mississippi thought to have been cured of HIV after being given a high dose of anti-HIV medications after birth. While Cohn thinks cure research is important, she believes ensuring everyone living with HIV is connected to care and adhering to treatment should be a research goal as well.

    “Many people went into this field to help manage this disease and help people living with HIV live normal lives,” Cohn says. “It seems the main focus of research now is a cure and that is concerning because only 28 percent of people living with HIV in the United States have a fully suppressed viral load and only 50 percent are in regular care. We have to focus on those people who are not doing well and do more to get them into care.”

    The number of new HIV infections each year in the US is between 50,000 and 60,000. Cohn would like to see this troubling statistic investigated including the role depression, substance use and socioeconomic factors may play in contracting HIV and in preventing optimal control of HIV. Knowing research dollars are tight, Cohn says partnering more frequently with other funding sources such as the National Institute of Mental Health and the National Institute on Drug Abuse would be beneficial.

    When she is not conducting research at the Northwestern ACTG site, Cohn likes to play tennis, garden and travel. She also recently began swing dancing.

  • Nurse Finds Knack for Data

    January 1, 1970 pendari Uncategorized

    Sharon Kohrs, RN, has watched her career progress from an inpatient nurse to a research nurse to a data and quality assurance manager. One constant over the years has been the patient population she serves – people living with HIV.

    “I am never bored with my work,” says Kohrs. “I have met the most amazing people over the years and have seen the disease progress to a manageable condition rather than one of fear. I have been able to experience the early years, when I worked on an inpatient HIV/AIDS unit, to now seeing people living everyday lives – having families, working and managing their disease. All these years later, I still see an amazing group of dedicated people working hard every day to fight HIV. They awe and inspire me.”

    Kohrs has worked as a research nurse and data manager at the AIDS Clinical Trials Group (ACTG) Network’s Cincinnati Clinical Research Site (CRS) for the past 22 years. From 1992 to 1996, she served as the site’s research nurse seeing clinical trial participants during study visits. Then in 1996, she was asked to review the site’s case report forms. Clinical studies use a series of case report forms to consistently collect data on everything from a patient’s vital signs to medical history.

    “I seem to have a knack for it and initially quality assurance became about 25 percent of my work,” Kohrs says. “That quickly increased to about 50 percent of my work with an agreement that I would continue to follow the people I had on study, but not take on any new participants so that eventually I would be doing 100 percent quality assurance.”

    Kohrs’ last group of study participants rolled off of study last year. These were people who volunteered for the ACTG’s ALLRT study. The trial began in 2000 as follow-up study for people living with HIV in the United States who were already enrolled in a parent ACTG study. The goal of the trial was to follow people living with HIV for an average of five years or longer after starting anti-HIV treatment to better understand the long-term effects of the virus and anti-HIV medications. Thanks to the rich database collected over the study’s 13 years, investigators have made breakthroughs in immune recovery, inflammatory markers, opportunistic infections and cure research.

    Tammy Miller, RN, is the Cincinnati CRS Coordinator. She attended nursing school with Kohrs. They immediately connected because they were “non-traditional” students in a very otherwise “traditional” class of bachelor of science in nursing degree students, most of them younger and unencumbered with family-rearing responsibilities. The two of them quickly realized they had both faced loss and grief in their lives, both at a very young age, so it took no time for a lifelong friendship to ensue. Kindred spirits, facing parenting, college and life issues together they soon realized another very important connection – they each had a deep passion for persons living with AIDS. From that point forward, their separate career paths move ahead, sometimes in parallel and sometimes intertwine, but always in the same direction – caring for persons with HIV/AIDS infection.

    “What best sums up our relationship, both personal and professional, is a quote from the artist Brian Andreas ‘You’re the strangest person I met she said and I said you too and we decided we’d know each other a very long time,’” says Miller. “Always professional and deeply committed to the highest standards of quality, Sharon’s famous motto which will live in infamy is ‘If it’s not written down, it DIDN’T happen!!!’”    

    Now fully engrossed in the data management role at the Cincinnati site, Kohrs begins each day checking data reports. She then pulls the schedules of upcoming study participants’ visits for each nurse. The rest of her day varies between chart reviews, keying data, participating in meetings and responding to any computer issues.

    Carl Fichtenbaum, MD, is the Cincinnati CRS Leader. He calls Kohrs a roll-up-your- sleeves-jump-right-in-how-can-I-help-out type of person.

    “Sharon is a very careful critical thinker. She is able to really tease out protocols and understand what we are supposed to do. She has developed a system of quality assurance that has helped us succeed over the past two decades within the ACTG.  Our nurses go to her often to ensure that they are doing things the right way.  Whenever I have a question about interpreting a protocol, I always recommend we go to Sharon for help.  She has developed relationships nationally within the ACTG and is very well respected,” Fichtenbaum says. “Sharon is an incredibly giving person. She always knows when people are struggling in their personal lives. She is very involved in her church. Sharon and her husband, David, work with younger couples and provide support to those in need.” 

    With her roots in nursing, Kohrs often thinks of the people she used to treat on study. She would like to see future ACTG studies address the issues facing an aging population of people living with HIV.

    “I’m always curious about our long-time HIV infected population,” she says.

    When she is not ensuring the integrity of the data being collected at the Cincinnati site, Kohrs can be found hiking and camping with her family. Her favorite place to visit is Glacier National Park in Montana.

  • National Latino AIDS Awareness Day

    January 1, 1970 pendari Uncategorized

    By Dr. Jose Castillo-Mancilla

    Hispanic/Latinos are the fastest growing minority ethnic group in the United States, accounting for 17 percent of the current population. This is projected to increase to 31 percent by 2060. As we celebrate the National Latino AIDS Awareness Day, it is time to think about how HIV/AIDS affects the Hispanic/Latino community in the US and what can you do to stop it.

    The CDC indicates that more than 95,000 U.S. Hispanic/Latinos have died of HIV/AIDS since the beginning of the epidemic, and that this disease continues to affect us disproportionately. About 20 percent of the new HIV infections occur in individuals of Hispanic/Latino ethnicity, both men and women, and the lifetime likelihood of being diagnosed with HIV/AIDS in is higher for Hispanic/Latinos compared to whites. This also translates into a much more advanced disease stage once the diagnosis is made, which is fueled by factors such as lack of healthcare access, health illiteracy, poverty, stigma and misinformation. Altogether, these elements make our community more vulnerable to HIV/AIDS, which is unacceptable.

    The good news is that Hispanic/Latinos are strong and determined. We have demonstrated that we can move forward and defeat adverse circumstances, but we can only do this if we stand united and fight as one. This year’s National Latino AIDS Awareness Day goal is “Commit to Act.” The following are powerful actions you can take to gain control of your health and control of HIV.

    Take action #1

    If you do not know your HIV status, get tested today. Not knowing whether you have HIV is the main risk factor to develop AIDS and the main reason why you can infect others. Even if you do not think you are at risk, you should get tested at least once. This is no different than getting tested for diabetes or high cholesterol. If your healthcare provider does not offer you a test, ask for one. Knowing your status will help stop the spread of HIV/AIDS.

    Take action #2

    If you are infected with HIV, get into care. Once you have been diagnosed, it is time to act and see a healthcare provider. You may feel fine and think you can wait, but starting treatment early is the best you can do to remain healthy and protect others. The longer treatment is delayed, the longer it will take to control the virus and recover your immune system. Every day you delay care is a day you are at risk.

    Take action #3

    If you are in care, stay in care. There is little benefit on seeing you provider once and not following up. Multiple estimates indicate that only 40 percent of HIV-infected individuals in the US remain in care. This is a real problem because it puts you at risk for advanced disease and of infecting others. If you have difficulty keeping appointments or face barriers, ask for help. Many community-based organizations can help you “navigate the system” so that you can get healthy and stay healthy.

    Take action #4

    If you have been prescribed HIV medications, take your pills. The antiretrovirals are your bridge to health. By taking your medications, you can control the virus and become undetectable. This way, you can stop the progression from HIV to AIDS and you can reduce transmission to others along with other safe sex practices such as condoms. If you have side effects from your medications, ask your healthcare provider and together you can find a treatment option that will be best for you.

    Take action #5

    If you want to help, participate in research studies. Studies have shown very little participation from Hispanic/Latinos in HIV research, which limits our understanding of the disease in our ethnic group. Clinical trials are excellent ways to find out which treatments are the best and to develop new treatment strategies to control the virus, and new research is aiming at curing HIV. If you do not know about HIV research, ask your healthcare provider or visit the AIDS Clinical Trials Group (ACTG) Network’s website http://actgnetwork.org/trials_open_enrollment. Since 1987, the ACTG has conducted studies to find more effective and better tolerated anti-HIV medications. The Network also researches common co-infections people living with HIV also face including hepatitis C virus and tuberculosis. Participating in research is the best way for you to help future generations and fight back against HIV/AIDS.

  • UCLA Researcher Strives to Improve ART

    January 1, 1970 pendari Uncategorized

    Eric Daar, MD, remembers completing his infectious diseases fellowship at Cedars-Sinai Medical Center in Los Angeles
    during the height of the AIDS epidemic.

    “Cedars-Sinai Medical Center was the hub of the HIV epidemic in Los Angeles,” he says. “During that time, I witnessed how devastating this disease was to a population of people that were my peers. It was too big a problem to ignore and way too interesting not to be intrigued. HIV also represented an extraordinary opportunity to get involved in something that was new
    and for which there was an enormous amount of work to be done in order to move the field forward.”

    Daar eventually became the Chief of Infectious Diseases at Cedars-Sinai. In 2001, he accepted the position as Chief of HIV Medicine at Harbor-UCLA Medical Center. The medical center is a research site with the AIDS Clinical Trials Group (ACTG) Network. For the past 13 years, Daar has been an investigator with the ACTG, specializing in antiretroviral studies and serving a Clinical Research Site Leader. He is Chair of the Network’s Antiretroviral Strategies subcommittee and a member of the ACTG’s Scientific Agenda Steering Committee.

    “I was co-chair of A5202, which was a mammoth study that along with substudy A5224s provided invaluable information to inform the treatment decisions for first-line therapy,” he says. “This study utilized all the resources of the ACTG and pulled together people with a broad range of expertise to address multiple scientific questions.”

    The studies identified the most effective combination of anti-HIV medications for people living with HIV who had never been on treatment. The substudy assessed how the different medications affected bone mineral density and fat. Paul Sax, MD, is the Clinical Research Site Leader at the ACTG’s Brigham and Women’s Hospital site in Boston. He was co-chair of study A5202 with Daar.

    “Dr. Eric Daar combines all of the optimal characteristics of a successful clinical researcher – he is scientifically curious, understands what makes a good research question, meticulous about details and extremely supportive of other members of the research team,” says Sax. “In addition, he has an uncanny ability to resolve areas of disagreement that may arise between individuals working on the same project, all with the goal of moving the project forward!”

    In Los Angeles, Daar says his HIV clinic treats predominately Hispanic and African American men who have sex with men (MSM) and Hispanic and African American women who have sex with men. Judith Currier, MD, MSc, is the ACTG’s Vice Chair and the Principal Investigator of the University of California Los Angeles AIDS Prevention and Treatment Clinical Trials Unit (CTU). Daar’s site is part of this CTU.

    “I consider it a privilege to be able to work with Eric Daar both in the UCLA CTU and within the leadership of the ACTG,” says Currier. “He is an accomplished investigator, a skilled leader and a wonderful friend. He has the ability to see the big picture, but at the same time he has the attention to detail that is essential for research at every step along the way. He is beloved and respected by everyone in the LA community for his commitment to clinical service and education.”

    In addition to conducting research and caring for patients, Daar also works with his site’s Community Advisory Board (CAB). Each ACTG site has a CAB made up of people affected and infected by HIV. CAB members provide researchers with feedback about studies and assist with community outreach.

    “I am very involved with our CAB and meet with them on a monthly basis,” says Daar. “They are invaluable in defining what are the highest priority questions for the community as well as providing insight into study design to optimize enrollment and strategies to enhance patient participation in specific studies.”

    Reflecting on his career investigating HIV, Daar is impressed with the strides research has made thus far.

    “Going from a time where the research focus was on optimizing therapy to defining how to minimize long-term toxicity and now characterizing and strategizing how to manage some of these conditions is exciting,” he says. “We are now focused on research opportunities to manage unique conditions such as persistent neurocognitive deficits in people with suppressed viral loads and developing studies to address retention in care as well as the possibility of a cure. It is hard not to be excited with a field where there is a constant evolution of what are the highest priority scientific questions.”