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Archive for March, 2014

Patients Should Be Educated About Clinical Trials

Thursday, March 27th, 2014

By Roland Matthews, M.D. and Nancy M. Paris, MS, FACHE

According to a national public opinion poll released last summer, more than two-thirds of Americans say it’s likely they would participate in a clinical trial if recommended by their doctor, but only 22 percent say a doctor or other healthcare professional has ever talked to them about medical research. Commissioned by Research!America, a research advocacy group, the findings of the survey paint a vivid picture of the need for healthcare providers to educate patients on the benefits of clinical trials.

Because clinical trials represent the leading edge of cancer treatment and quality care, Georgia CORE – the Center for Oncology, Research and Education was formed in 2003 to focus on increasing their access and availability. Community and academic oncologists created a research network – not to serve one institution or region of the state, but to ensure equitable distribution of trials and treatments across the state.

A common misperception about clinical trials is that they are only academic. It does take the scientist to develop the concept for new and effective treatments. But it also takes community oncologists to administer the treatments. The collaboration that was formalized a decade ago in building our research network has provided a “safe zone” for studies here, so much so that 90 percent of the oncologists who diagnose and treat cancer patients in Georgia are affiliated with Georgia CORE.

The intentional collaboration and deliberate focus on clinical trials for cancer has resulted in their increased availability in Georgia by at least 80 percent in the last four years. Also, access to these trials has increased, with 42 percent offered in rural Georgia, where 46 percent of the state’s population resides. And though, as the study points out, accrual rates are low across the country, participation in cancer clinical trials in Georgia has increased – notably among minorities, who represent approximately 25 percent of patients enrolled in Georgia CORE sponsored studies.

The most troubling data point from the Research!America poll is that of the respondents that said they have heard of a clinical trial, more than half learned about it through the Internet and only a quarter from a doctor or other healthcare provider. We value the Internet, which is why we created GeorgiaCancerInfo.org – an online information center for all things cancer all over the state. But we also believe patients need to hear from their healthcare providers about options for the most advanced treatments available.

Clinical trials allow for breakthroughs. Clinical trials allow for discoveries that will, one day, help find cures for cancer, and in the mean time, improve the quality of life of cancer patients. When educated and given the opportunity, patients understand that participating in a study not only is potentially beneficial for them, but also for those 48,000 Georgians who will be diagnosed with cancer this year.

Healthcare providers must work together to ensure all cancer patients in Georgia know their options and understand the benefits of clinical trials. We must raise awareness that our patients can benefit from the amazing research happening right here in our state. If we do not, what’s the point of the research?

Dr. Roland Matthews is Chair of the Department of Obstetrics and Gynecology at the Morehouse School of Medicine and Medical Director of the Georgia Cancer Center for Excellence at Grady.  He is a board certified obstetrician and gynecologist with subspecialty certification in gynecologic oncology.

Nancy M. Paris is the President and CEO of the Georgia Center for Oncology Research and Education, a nonprofit enterprise working to strengthen the quality of cancer care in Georgia.

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Is a Cure for HIV in Sight?

Thursday, March 27th, 2014

By Vincent C. Marconi, M.D., and Mirko Paiardini, Ph.D.

For the first time in almost three decades of AIDS research, the international scientific community has undertaken a large-scale, concerted effort to discover a cure for HIV.

Several anecdotal reports and small clinical studies have provided some optimistic insights into the feasibility of HIV eradication. In 2009, the dramatic case study of Timothy Brown (the Berlin patient) ushered in an era of cure fervor(1). Brown was diagnosed with HIV in 1995, started antiretroviral therapy (ART) and did well for 11 years. Then in 2006, he was diagnosed with acute myelogenous leukemia (AML) and subsequently was treated with chemotherapy complicated by pneumonia and sepsis. His doctors then decided to try a different approach.

His doctors knew that a stem cell transplant might cure his AML. Using this opportunity, they chose a unique donor whose cells lacked the critical co-receptor (CCR5) necessary for the entry of HIV into cells. Their hope was to rebuild his immune system in such a way as to make his body resistant to HIV infection.

Shortly after receiving his “HIV-resistant” stem cell transplant, Mr. Brown stopped taking ART and has never looked back. Now almost seven years later, he remains free of HIV despite careful examination of samples of his blood, brain, liver, lymph nodes, cerebrospinal fluid, intestinal tract and bone marrow.

Since that time, two other patients with HIV in Boston have undergone stem cell transplants for lymphoma. They were found this year to be “HIV-free” after stopping ART, despite having donors who did express CCR5. Only time will tell if these two patients remain aviremic indefinitely like Timothy Brown.

Although stem cell transplants appear to be effective in achieving a cure, the associated patient risks and financial cost have not made transplants the most attractive option. But they have demonstrated that HIV eradication is possible.

Obstacles to Eradication

In 2003, Dr. J.D. Siliciano and colleagues from Johns Hopkins Hospital published a study that many believed could have ended all hope for a cure(2). They showed that with current highly potent ART, it would take more than 70 years before all HIV-infected cells would completely disappear from the body. This observation was based on modeling the average decay rate of resting CD4 cells and other long-lived cells harboring HIV in a latent state. In the latent state, the HIV virus is integrated into the host genome as a provirus and is not transcriptionally active. These cells have an intrinsically long half-life, and because the provirus is not producing active virus, this HIV “reservoir” remains protected from ART and immunologic clearance.

Even more daunting, Dr. Nicolas Chomont et al. posited in 2009 that some cells could maintain this HIV reservoir indefinitely through homeostatic proliferation. In other words, infected cells could create copies of themselves, including both the host and HIV genome(3).

Such an immortalized state could make eradication of this population of cells even more challenging. Because of this, scientists spearheading the cure agenda have been divided on whether the goal should be to eradicate every last HIV-infected cell from patients or not. This goal, known as a “sterilizing” cure, may appear to be the ideal approach; however, it has been shown that only a small percentage of infected cells harbor a provirus that is even capable of productive infection.

Unfortunately, current methods to identify these cells are cumbersome and suboptimal. Therefore, a growing number of researchers are aiming for a less ambitious target of achieving a “functional” cure. A functional cure is analogous to conventional objectives for cancer chemotherapeutics. In this scenario, an individual would receive treatment that would reduce the reservoir to such an extent that ART could be stopped and the remaining HIV would be kept suppressed by the individual’s immune system. Although this seems a somewhat radical approach, there are several examples where immunologic control of HIV occurs naturally or has happened after stopping ART.

Examples of HIV Control

In the absence of ART, the host anti-viral immune responses are incapable of controlling the virus, leading to a chronic infection that persists throughout life in most humans living with HIV. In contrast, a rare subset of individuals (<1 percent) infected with HIV, known as Elite Controllers (EC), can maintain undetectable viral loads for many years without ART.(4) These individuals are living proof that the human immune system is able to fully control HIV.

Further research has revealed that there are a variety of factors that contribute to the ability of ECs to maintain an undetectable viral load. These factors include the host immune response, host genetic factors(5) and viral factors. Understanding the main mechanisms allowing EC to control HIV replication without ART will, undoubtedly, represent an important step in HIV research. However, this knowledge will significantly impact HIV treatment and cure only if we can design therapeutic strategies and/ or vaccines that induce these mechanisms of control in the general population living with HIV.

Two recent studies generated excitement and optimism in the field regarding the possibility of achieving a “functional” cure without very complex, risky and expensive procedures such as stem cell transplants. Both looked at individuals treated early after initial infection with HIV.

The first, a case study of a Mississippi baby(6), garnered tremendous media attention. An infant was treated with ART starting at 30 hours after birth owing to a high-risk exposure—the mother had a detectable viral load prior to delivery. Treatment was continued through 18 months of age because repeated testing by RNA and DNA met criteria for HIV infection, but treatment was then discontinued. At 30 months of age, the child has remained virologically undetectable in plasma samples and peripheral blood mononuclear cells. Furthermore, HIV antibody testing has reverted to negative.

In the second study, Dr. Asier Sáez-Cirión and colleagues in the VISCONTI cohort showed that approximately 15 percent of individuals with HIV that initiated ART close to initial infection showed long-term control of viremia for several years after ART-interruption (median of 89 months)(7). Interestingly, these individuals, known as post-treatment controllers (PTCs), do not have the strong HIV-specific immune responses nor the favorable genetic factors (protective HLA B alleles) characteristics of EC. Remarkably, not only did PTCs show a lower viral reservoir on therapy, but they were also able to maintain or even reduce their meager viral reservoir while off ART.

Examination of the reservoir in these individuals showed that the types of cells infected with HIV in the reservoir differed when compared to those that did not control HIV. In fact, relatively few long-lived central memory T cells were infected compared to the short-lived effector memory T cells. These findings are consistent with those generated in sooty mangabeys, an African monkey species that do not progress to AIDS despite many years of infection with Simian Immunodeficiency Virus,(8) suggesting that strategies aimed at functional cure will need to not only reduce the size but also affect the “quality” of the HIV reservoir.

Current Cure Strategies

At present, several strategies are being explored to achieve a cure of HIV. One approach involves inducing latently infected cells to produce the virus again with the goal of purging the viral reservoir. This would lead to expression of viral proteins on the cell surface, allowing the host immune system to target these cells for clearance. It could also initiate a cell-signaling cascade leading to programmed cell death in these cells.

Several existing FDA-approved drugs and other novel compounds are currently being investigated, including histone deacetylase inhibitors (HDACi) and disulfiram. Although an initial study by Dr. David Margolis et al. demonstrated conversion of latent to productive infection in the presence of a single dose of the HDACi vorinostat, there did not appear to be a significant change in the overall size of the reservoir(9). This implied that despite reversing the latency step, there did not appear to be an increase in the death of these cells, at least over the period of observation in this study.

Another approach has been under consideration since the mid-1980s. Researchers have explored methods to enhance an HIV-infected individual’s immune response to their own HIV, employing what have been called therapeutic vaccines. A form of “passive immunity” is also being considered. As one example, antibodies engineered to target HIV-infected cells and deliver a cytotoxin are currently under investigation.

Chronic HIV infection leads to chronic immune activation, as the immune system is continually fighting a pathogen. This leads to many of the comorbid conditions seen in those with HIV disease (for example, early heart disease) and plays a major role in CD4 cell loss.

In contrast to enhancing the immune system, some scientists have considered various methods to reduce this ongoing inflammatory state. By tempering this inflammation, expression of viral proteins and CCR5 are decreased, resulting in less effective HIV replication. In addition, less immune activation will have an effect of reducing bystander apoptosis of HIV-uninfected CD4 cells, potentially preserving critical immune function. Studies with a variety of biologic agents have been performed and are ongoing to pursue this possibility.

Gene therapy has shown some promise for the cure agenda as well. One particular strategy has been to render host cells resistant to HIV infection using zinc-finger nucleases(10). These proteins essentially disrupt expression of CCR5. In a sense, this recreates the conditions experienced by Timothy Brown after his stem cell transplantation.

A very practical approach to a cure has been to “optimize” ART. By diagnosing and treating individuals soon after infection, the goal is to replicate the experiences of the VISCONTI cohort. This, coupled with better antiretroviral drugs with greater penetration into body sites and greater activity against resting CD4 cells and macrophages, may lead to a functional cure.

Ultimately, if anything has been constant throughout the past three decades of research and clinical care, it is that effective strategies are those that work in combination. It has become apparent that using multiple approaches will likely be required to achieve even a functional cure.

Currently, the concept of “kick and kill” is one such combination approach, wherein the latent reservoir is purged with medications like HDACi and subsequently targeted for cell death using therapeutic vaccines or immunotherapy. This could be coupled with improved ART and biological agents aimed at reducing chronic inflammation.

Although the promise of a cure and HIV eradication has been encouraging of late, this enthusiasm has been offset by many of the practical issues surrounding the pandemic at large. The costs associated with both discovery and implementation strategies must be balanced by the urgent need to get existing individuals living with HIV diagnosed, linked and retained on existing ART. For now, it is unclear precisely how or when this effort will be successful, but it is clear that it will succeed.

Vincent C. Marconi, MD is the Associate Medical Director of the Grady Health System’s Infectious Disease Program and has a joint appointment in the Emory School of Public Health. He received his medical degree from Johns Hopkins University School of Medicine and completed his training in Internal Medicine and Infectious Diseases at Harvard Medical School. In 2005, Dr. Marconi maintains an ongoing collaboration that began in 2004 with colleagues at McCord Hospital in Durban, South Africa.

Mirko Paiardini, Ph.D. is an Assistant Professor in the Division of Microbiology and Immunology at Yerkes National Primate Research Center, and in the Department of Pathology and Laboratory Medicine of the Emory University School of Medicine. He completed his undergraduate and graduate work at the University of Urbino, Italy. Before joining Emory University in 2010, Dr. Paiardini was a research associate in the laboratory of Dr. Guido Silvestri at the University of Pennsylvania School of Medicine.

References

1. Hutter, G., et al. Long-term control of HIV by CCR5 Delta32/Delta32 stem- cell transplantation. N Engl J Med 360, 692-698 (2009).

2. Siliciano,J.D.,etal.Long-termfollow-upstudiesconfirmthestabilityofthe latent reservoir for HIV-1 in resting CD4+ T cells. Nat Med 9, 727-728 (2003).

3. Chomont, N., et al. HIV reservoir size and persistence are driven by T cell survival and homeostatic proliferation. Nat Med 15, 893-900 (2009).

4. Okulicz,J.F.,etal.Clinicaloutcomesofelitecontrollers,viremiccontrollers, and long-term nonprogressors in the US Department of Defense HIV natural history study. J Infect Dis 200, 1714-1723 (2009).

5. International, H.I.V.C.S., et al. The major genetic determinants of HIV-1 control affect HLA class I peptide presentation. Science 330, 1551-1557 (2010).

6. Persaud, D., et al. Absence of Detectable HIV-1 Viremia after Treatment Cessation in an Infant. N Engl J Med (2013).

7. Saez-Cirion, A., et al. Post-treatment HIV-1 controllers with a long-term virological remission after the interruption of early initiated antiretroviral therapy ANRS VISCONTI Study. PLoS Pathog 9, e1003211 (2013).

8. Paiardini, M., et al. Low levels of SIV infection in sooty mangabey central memory CD(4)(+) T cells are associated with limited CCR5 expression. Nat Med 17, 830-836 (2011).

9. Archin, N.M., et al. Administration of vorinostat disrupts HIV-1 latency in patients on antiretroviral therapy. Nature 487, 482-485 (2012).

10. Maier, D.A., et al. Efficient clinical scale gene modification via zinc finger nuclease-targeted disruption of the HIV co-receptor CCR5. Human gene therapy 24, 245-258 (2013).

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New Technique Allows for Removal of Previously Inoperable Tumors

Thursday, March 27th, 2014

Researchers at Children’s Healthcare of Atlanta, Emory University and Georgia Tech have announced a groundbreaking advance in treating previously inoperable brain tumors. With this new technique, thought to be a tumor monorail of sorts, researchers can now transport cancer cells using nanotechnology to a new location on the surface of the skull.  Details of the technique were reported February 16 in the journal Nature Materials.

Researchers have learned to hijack the way by which malignant cells spread throughout the brain- by following nerve fibers and blood vessels- and use it to draw cancer cells to the surface of the brain, where tumors are led to chemotherapeutic reservoirs. Instead of invading new areas of the brain, the migrating cancer cells latch onto specially-designed nanofibers and follow them to a location – potentially outside the brain – where they can be captured and killed.

“For patients with previously inoperable brain tumors, this changes everything,” said Barun Brahma, M.D., Pediatric Neurosurgeon, Children’s Healthcare of Atlanta. “When a tumor is located in a part of the brain that we can’t safely access to surgically remove, a patient’s options and prognosis are limited. With this new technology, we can move the cancer cells to a place where we can more safely remove them or kill them using a chemotherapeutic agent. This technique will change the future of how we remove tumors and beat cancer.”

Though it won’t necessarily eliminate the cancer itself, the new technique reduced the size of brain tumors in animal models, suggesting that this form of brain cancer might one day be treated more like a chronic disease, allowing patients to live normal lives despite their disease.

“Treating brain cancer with nanofibers could be preferable to existing drug and radiation techniques,” said Ravi Bellamkonda, lead investigator and chair of the Wallace H. Coulter Department of Biomedical Engineering at Georgia Tech and Emory University. “One attraction about the approach is that it is purely a device. There are no drugs entering the blood stream and circulating in the brain to harm healthy cells. Treating these cancers with minimally-invasive films could be a lot less dangerous than deploying pharmaceutical chemicals.”

The research was performed using Glioblastoma multiforme cancer, also known as GBM, which is difficult because the aggressive and invasive cancer often develops in parts of the brain where surgeons are reluctant to operate. Before the technique can be used in humans, it will have to undergo extensive testing, including evaluating the technique with other forms of cancer, and be approved by the FDA.

Seed funding for early research to verify the potential for the technique was sponsored by Ian’s Friends Foundation, an Atlanta-based organization that supports research into childhood brain cancers.

Children’s, Georgia Tech and Emory University have a longstanding partnership in brain tumor research that has developed several new technologies for treating inoperable tumors. The research is supported by the Children’s Neurosciences Center, the National Cancer Institute (NCI), part of the National Institutes of Health, Ian’s Friends Foundation, and by the Georgia Research Alliance.

In addition to those already mentioned, the research team included Tobey MacDonald, Director of the Neuro-Oncology Program at the Aflac Cancer Center of Children’s Healthcare of Atlanta and Emory University School of Medicine, and Martha Betancur, Gaurangkuma Patel, Chandra Valmikinathan, Vivek Mukhatyar, Ajit Vakharia and S. Balakrishna Pai from the Wallace H. Coulter Department of Biomedical Engineering at Georgia Tech and Emory University.

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Georgia Tech, WellStar Health System Announce Collaboration

Thursday, March 27th, 2014

The Georgia Institute of Technology and WellStar Health System have entered into a collaborative research partnership to develop patient-centered technologies and best practices.

WellStar and its Center for Health Transformation (CHT) will work in tandem with Georgia Tech faculty and students in the School of Electrical and Computer Engineering and the Georgia Tech Research Institute (GTRI) to establish a framework for clinically and non-clinically-focused, high-impact patient-centered research collaboration. Together, the partners will assess, develop and leverage key technologies while optimizing resources.

The collaboration is spearheaded by Robin Wilson, M.D., president of Center for Health Transformation, senior vice president and chief health innovation officer for WellStar, and Brian Liu, principal investigator and researcher with GTRI’s Electronic Systems Laboratory (ELSYS).

CHT is a partnership-based organization with a mission to focus on issues relating to improving quality, cost, access and delivery of healthcare in the current health provider environment. CHT will work directly with its new collaborators through “local learning labs” where providers and technologists will meet, conceptualize and seek innovative, collective solutions to transform the delivery of healthcare.

In the near-term, GTRI and WellStar will seek to collaborate on some of their current health-related research and development projects while looking for new, mutually beneficial opportunities. Eventually, the GTRI team will be able to make use of CHT’s local learning lab space and work side-by-side with WellStar’s innovative and leading healthcare providers.

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CHOA and Emory Launch Comprehensive Congenital Heart Center

Thursday, March 27th, 2014

A few decades ago, babies born with serious heart defects often died in childhood. Major medical advances are allowing these patients with congenital heart defects (CHD) to live longer than ever before, growing into teenagers and adults who need ongoing, specialized care.

Children’s Health Care of Atlanta and Emory Healthcare are partnering to launch the Congenital Heart Center of Georgia (CHCG). One of the largest programs in the United States and the first in Georgia, the Congenital Heart Center of Georgia is a comprehensive program for children and adults with CHD, providing a continuum of lifesaving care from before birth through adulthood.

The program will be overseen by Robert Campbell, MD, chief of cardiac services, Children’s Healthcare of Atlanta Sibley Heart Center (SHC), along with Wendy Book, MD, professor of medicine, Emory University School of Medicine and director of Emory’s ACHC, and Brian Kogon, MD, chief of cardiothoracic surgery at Children’s Sibley Heart Center and associate professor of surgery, Emory University School of Medicine.

Campbell says that while little research has been done to quantify the problem in the U.S., studies have shown that approximately 40 percent of CHD patients in Canada and Europe stop seeing heart specialists between the ages of 13 and 21 years old.

Under the newly formed Congenital Heart Center of Georgia, Campbell and the cardiac team at Children’s SHC will work closely with Emory’s Adult Congenital Heart Center (ACHC) team to not only help their CHD patients make a seamless transition from pediatric to adult care, but will offer the latest medical research and treatments available throughout the journey.

According to Campbell and Book, another reason for the decline in the number of CHD patients who continue treatment is that young adults often believe they are “invincible,” and unless they have symptoms, they do not see the need for ongoing treatment into adulthood.

“We are hoping to correct some of the misconceptions about CHD through the Congenital Heart Center of Georgia and offer a step in the right direction to help our patients receive continued, critical care and live longer more productive, healthier lives,” says Book.

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Piedmont Henry Hospital Launches Lung Cancer Screening

Thursday, March 27th, 2014

Piedmont Henry Hospital has launched a new lung cancer screening program to improve early detection of the disease.

Patients who meet a certain criteria and are deemed “high risk” for lung cancer will be able to participate in the new program which uses a low-dose CT (computed tomography) screening to detect the disease. Those who are at high risk include people older than 55 years of age who have smoked approximately one pack of cigarettes a day for more than 30 years; those who have smoked two packs a day for 15 years; and those who have smoked three packs a day for 10 years or more.

Also at risk are current or former smokers over 50 years of age with at least a 20-pack year history and at least one additional risk factor (radon exposure, lung disease history, family history of lung cancer, or occupational exposure to known cancer-causing chemicals). Pack years are defined by the number of packs per day multiplied by the number of years a person has smoked.

“Smoking is the biggest risk factor for lung cancer, which is why it is so important older patients who have smoked for so long get screened,” said Kim Vu Neisler, radiation oncologist at Piedmont Henry Hospital. “The test only takes 30 minutes to complete and the new low-dose CT uses far less radiation. This new program will help us catch lung cancer at an earlier stage so we have better chances of curing our patients and giving them a fighting chance at life.”

A national lung screening trial found that screening with the use of low-dose CT, which is used to find nodules in the lungs, reduces mortality from lung cancer by 20 percent. Since insurance does not typically cover these screenings, Piedmont Henry will offer the tests at a discounted rate of $99.

As with many diseases, early detection of lung cancer is key to successful treatment. Screenings such as the new low-dose CT can detect cancer before signs appear. Common symptoms of lung cancer include coughing that lasts, blood in lungs, excessive mucus, shortness of breath, wheezing, chest area pain, tiredness, pneumonia, hoarse voice, pain when swallowing, and high-pitched sound when breathing.

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WellStar Board Appoints Swayze, Moore and Morgan

Thursday, March 27th, 2014

WellStar Health System has announces that Gary Miller will become chair of the WellStar Board of Trustees on July 1.  Miller is the president and CEO of GreyStone Power Corporation.  He takes over for current Chair Janie Maddox, whose two year term as chair expires this year.  She will remain a Board member.

Miller has worked at GreyStone for 20 years, serving in numerous roles.  He is both a Certified Public Accountant and holds a law degree from Georgia State University.  Miller has been on the WellStar Board of Trustees for 11 years.

Along with Miller’s appointment, David Hafner, M.D. will become vice chair, effective July 1.  Dr. Hafner is in line to take over as chair of the Board of Trustees when Miller’s chairmanship ends in 2016.  Dr. Hafner is a partner at Vascular Surgical Associates, PC in Marietta and serves as the medical director of WellStar’s vascular lab.  He is board certified in surgery with the added board certification qualification in vascular surgery and is a diplomat of the American Board of Surgery.

Additional Board appointments:

O. Scott Swayze, M.D. is a board certified orthopaedic surgeon and current president of Pinnacle Orthopaedics and Sports Medicine, LLC.  He started practice in Marietta in 1992 and specializes in surgery of the hip and knee.  He received his undergraduate degree in biomedical engineering from Vanderbilt University and his M.D. from the University of Mississippi.  His orthopaedic training was completed at Emory University.

Mitzi Moore is president, owner and co-founder of Sundial Plumbing in Marietta.  She has more than 23 years of experience emphasizing business development and leadership in the plumbing contract industry.  She serves on numerous boards, including Kennesaw State University and Chattahoochee Technical College.

Greg Morgan is the partner-in-charge of the Atlanta office of Mauldin & Jenkins, LLC, where he is responsible for the administration of the Atlanta office and ensuring Mauldin & Jenkins meets client expectations.  He is a certified public accountant and graduate of Georgia Southern University.  Morgan is a previous chairman of the Cobb County Chamber of Commerce.

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MAA Board Meeting

Tuesday, March 18th, 2014

March 18, 2014, Brio, Buckhead. For more information, visit Medical Association of Atlanta

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AMGMA Meeting: “Think Your Employees Love You?”

Thursday, March 13th, 2014

March 13, 2014, Villa Christina, Atlanta. For more information, visit Atlanta Medical Group Management Association

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Rising up to the Challenges of Adolescent HIV-Infection in Atlanta

Wednesday, March 5th, 2014

By Andres F. Camacho-Gonzalez, M.D., and Sophia A. Hussen, M.D.

At a time when HIV rates are stabilizing in most population sub-groups, the prevalence of HIV in youth is steadily increasing in the United States.

This trend is explained in part by increased survival of perinatally infected youth, but it is primarily attributable to increases in incident infections during adolescence. In fact, adolescents and young adults between the ages of 13 and 24 now make up the fastest-growing group of HIV-positive individuals in the country. Georgia is also ranked 4th in the nation for new HIV cases, and, despite extensive local prevention efforts, rates of new HIV cases are essentially unchanged since 2005.

Youth living with HIV (YLHIV) face a host of complex medical and psychosocial challenges that require intense and holistic support in order to optimize care. Understandably, there is concern that the combination of socioeconomic disadvantage and multiple types of stigma, superimposed on the developmental and physical turbulence of normal adolescencent development, may leave YLHIV at high risk for loss to medical follow- up, poor antiretroviral (ARV) adherence and generally suboptimal health outcomes.

Adolescents in general are known to have poor utilization of healthcare and prevention services. Despite national recommendations, it has been estimated that only 38 percent of adolescents receive preventive visits, and of those, only 40 percent spend time alone with their physicians receiving counseling on topics such as sexuality, mental health and substance use. Many adolescents rely on emergency departments for primary care, and they are more likely to be uninsured than any other age group.

In addition to the importance of medical care for the health of individual YLHIV, the ability of YLHIV to cope successfully and adhere to their medicines has additional public health implications for prevention of secondary transmission. As increasing numbers of YLHIV enter the healthcare system, it is imperative that HIV care is situated within relevant developmental and cultural contexts to optimize clinical, personal and public health outcomes.

The Ponce Family and Youth Clinic (PFYC) is the pediatric and adolescent-focused clinic within the larger Grady Infectious Disease Program (IDP). At the PFYC, we deal with these epidemiological realities and public health imperatives on a day-to-day basis. Currently the PFYC serves a total of 588 children and adolescent ages 0-24, 47 percent (279) of whom are between 16-24 years of age. In recent years, we have seen a rapid influx of newly infected adolescents into our clinic—the majority of whom are young men who have acquired HIV through sexual contact.

Meeting these young men and hearing their stories is often heartbreaking, as they frequently relate tales of poverty, victimization and bullying, and other childhood traumas. In spite of these obstacles, however, and notwithstanding the toll that their new diagnosis takes on them, many of these patients also display remarkable resilience and, with the support of our multidisciplinary staff, achieve optimal clinical outcomes as well as their own developmental goals of transitioning to adulthood.

One example of such a story is that of “Andre,” a 22 year old who came from a troubled childhood and an abusive household. At school, he was bullied and socially isolated, mainly for being overweight. Andre’s family rejected him when they found out about his sexuality, forcing him into transient and often unstable housing situations. He was finally able to break the cycle of abuse and housing insecurity when he moved to Atlanta to live with a friend.

Soon after his move, however, he started to feel ill and was ultimately diagnosed with HIV at the age of 20. He was devastated by this news and fell into what he described as a state of deep depression, until he came to the PFYC for his first medical appointment.

When he met with his medical provider for the first time, she taught him about HIV and helped him to understand immediately that HIV was a manageable, chronic condition. In addition to following up with her on a regular basis, he also immersed himself in other parts of the clinic support system—attending the weekly youth support groups on Tuesdays and forming close personal bonds with his psychologist and social worker. Referring to specific members of his medical care team and also to the clinic personnel in general, Andre, like many of our patients, describes the PFYC as a “family,” where he feels comfortable, supported and accepted.

Due in part to the support and self-esteem he gets from these interactions, Andre always comes to his appointments reliably. He takes great pride in his improving health and perfect adherence—stating that he has never once missed a dose of his prescribed HIV medicines. He has disclosed his status to some friends with mostly positive responses. He is also working full-time and hoping to complete his GED within the year.

Andre’s story is representative of many in our clinic and shows that in spite of seemingly tough odds, many of our patients are quite resilient and are able to achieve excellent medical outcomes in the setting of the multidisciplinary support provided at the PFYC.

Our services are diverse and designed to help these vulnerable youth cope with a range of challenges that they might encounter. Our medical staff includes five physicians and two physicians’ assistants, all of whom are highly experienced in, and passionate about, providing quality care for YLHIV. Additionally, the PFYC has three social workers dedicated exclusively to the pediatric/adolescent population, and each new patient is assigned to a social worker when they enroll in the clinic—providing a valuable system for keeping track of patients and getting them back into care if they miss an appointment, as well as helping them to navigate logistical challenges in their lives more generally.

We also have a pediatric psychologist who conducts individual therapy as well as group sessions for our HIV- positive adolescents. Other specialized services include a pediatric nutrition expert, as well as the range of other services available to patients in the IDP clinic more generally. With so many different professionals within the PFYC being involved in each young person’s care, it becomes relatively difficult for a patient to fall through the cracks and become lost to care.

Although many of our patients do well, there is also a lot that remains to be done—YLHIV still face considerable challenges from both a medical and a psychological standpoint, and there is a lot that is unknown about this population, as most HIV research has been conducted exclusively in older adult populations. To address these gaps in our collective knowledge, the medical providers at the PFYC are also involved in a variety of research endeavors designed to improve clinical care, outcomes and basic scientific understanding of pediatric and adolescent HIV.

The range of interests of our physician-researchers is broad and includes basic research focused on natural placental mechanisms of protection for prevention of mother-to-child transmission, immunology research with primates, clinical and translational research on vitamin D levels in HIV infection, neurobehavioral outcomes of HIV- infected children and adolescents and socio-behavioral research focused on engagement in care.

The need to improve engagement in HIV care for youth is one of the most pressing issues in this population. Epidemiologic and anecdotal evidence suggest that although adolescents and young adults are coming to the PFYC in record numbers, there remain many undiagnosed cases in the community who could benefit from our care. As a result, one of our major initiatives right now is to create community and academic partnerships to improve linkage to HIV care at the PFYC for youth who are newly diagnosed with HIV and to create programs within our clinic to keep youth engaged in care once they are enrolled.

The Metropolitan Atlanta Community Adolescent Rapid Testing Initiative (MACARTI) is a multidisciplinary outreach project at the PFYC aiming to decrease the time to first medical visit, improve HIV care parameters and increase the retention rate among those patients who test positive. This project, created with the participation of our current patients, uses a combination of venue testing (at bars and nightclubs, public parks, libraries, malls, community centers, health care centers and sports venues), motivational interviewing techniques and intensive case management support at the time of testing and throughout their HIV care, helping us decrease the average time to first medical visit to two weeks after diagnosis and increase our retention rates to at least 80 percent.

Other retention initiatives specifically tailored to serve our youth include the development of a mobile phone application to remind patients to take their medications and come to medical visits, to provide another platform for learning about HIV and to allow patients to interact with members of the medical care team. We hope that by taking advantage of mobile technologies, we will expand our services beyond the clinic borders—an essential component of providing care in adolescent HIV infection.

Providing care for the unique youth population at the PFYC is both challenging and rewarding. Unfortunately, epidemiologic trends suggest that our clinic population will continue to grow in the years to come. It is our hope that by continuing to provide high quality, multi- disciplinary youth-focused care, and by developing novel ways of approaching and decreasing health disparities among youth, we can continue to improve the lives of YLHIV in Atlanta.

Andres F. Camacho-Gonzalez, M.D. is an Assistant Professor of Pediatrics at Emory University. He completed his medical training at the Universidad del Rosario in Bogota-Colombia and came to the United States in 2005 where he completed a pediatric residency in Albert Einstein Medical Center in Philadelphia. He completed a Fellowship in Infectious Diseases and a Masters in Clinical Science Research at Emory University. He provides care to HIV infected children, adolescent and young adults at the Ponce Family and Youth Clinic.

Sophia A. Hussen, M.D. is an assistant professor at Emory with a dual appointment in the School of Public Health and the School of Medicine. Her clinical and research interests focus on the treatment and prevention of HIV among adolescents and young adults. In her research, she seeks to bridge sociobehavioral and biomedical approaches to improving HIV-related outcomes for racial/ethnic and sexual minority youth. Dr. Hussen also has an interest in studying the HIV epidemic in Ethiopia.

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