HIV Has A Female Face
words by maryann brinley /
photograph by brad guice
magine being happily married for decades. Successfully raising children to adulthood. Living through your spouse’s death. Maintaining good health to age 60 and deciding to reward yourself by going on an exotic vacation. You meet a charming guy and though you haven’t had sex in eight years, you go for it: just once. What could happen? After all, you’re a professional woman living life to the fullest and isn’t this all about taking chances?
“I will never forget this woman who was referred to me,” says Sally Hodder, MD, medical director of the New Jersey Medical School Infectious Disease Practice (IDP) and principal investigator of the Adult Clinical Research Center (ACRC), which is located in the IDP. Her patient became HIV-infected from a limited number of sexual encounters with one man during a one week vacation. “It happens. It happens,” Hodder says, exuding her empathy easily. According to Hodder, this patient is just one of many “fabulous” women with terribly unfair, sad, HIV stories. “The bottom line is that women need to develop better negotiating skills. They really are at risk, but often do not perceive themselves to be so.”
Of the more than 1,400 HIV-infected patients being treated at the IDP, roughly half are women, and most are persons of color, groups that have been under-represented in past clinical trials assessing effectiveness of HIV therapies. “Many of these individuals live lives of social chaos,” she observes, “often in poverty and sometimes even homeless. Let’s face it, HIV has been considered a gay, white, male disease. That’s how the book on AIDS was written, but Newark has one of the highest HIV prevalence rates in the U.S., similar to some sub-Saharan African countries.” Roughly one-quarter of new HIV infections in the U.S. occur in women. Of those, 66 percent are in black women, despite the fact that they constitute only 13 percent of the U.S. female population. “There is enormous social stigma and stress that comes with this diagnosis.” The medical issues are just one piece of the puzzle. Hodder says that more than a third of her patients have hepatitis co-infections along with their HIV. Part of the IDP mission is also to address the sexual abuse, low self-esteem and violence that may be present in patients’ lives. “It’s tough to worry about taking your HIV meds so you can be alive in five years if you are worrying about having a safe place to sleep or enough food to eat.”
Lucky for them that the IDP clinic staff located on Level D in the Ambulatory Care Center on Bergen Street functions like a big supportive family with nurses (under the direction of Rondalya Deshields, RN, BSN, a seasoned nurse manager with years of experience in HIV management), nutritionists (who also administer a food bank), a substance abuse/mental health counselor, regulatory and data managers, doctors (including gynecologists, psychiatrists, and liver specialists), social workers, and Nancy Reilly, RN, “one of the most experienced HIV-AIDS clinical trial coordinators in the country.” In addition, medical students, residents, and infectious disease fellows learn to care for HIV-infected persons by working alongside this diverse, experienced team.
The adjective “exploding” comes up frequently when Hodder describes ongoing and up-and-coming clinical trials. The work load is considerable with two current National Institutes of Health (NIH) grants as well as multiple pharmaceutical investigations. The AIDS Clinical Trials Group (ACTG) is one of the most prestigious HIV trial networks in the world with 75 sites worldwide. Twelve new U.S. sites were added at the last competition, for which there were many applications. “It was a long-shot but we became one of them,” she says proudly. Then, after an application to join the NIH-funded HIV Prevention Trials Network (HPTN) was initially denied, Hodder’s team refused to take no. With an excellent initial score and a collaboration with Wafaa El-Sadr’s Centers for Innovative Research to Control AIDS (CIRCA), consisting of UMDNJ, Bronx-Lebanon Hospital, Mailman School of Public Health at Columbia University, and the New York Blood Center, the group argued successfully that their sites would be critical to initiating prevention studies in women as well as men who have sex with men.
More trials are in the wings. So many that she uses that adjective “exploding,” again. “We anticipate starting three more and are looking at combinations of drugs for treating HIV patients with resistant virus as well as the best therapies for people initiating antiretroviral therapy. Medical students as well as infectious diseases fellows participate. NJMS student Paige Luhn has been doing lung function testing for the presence of obstructive pulmonary disease in HIV patients. “People think of HIV as a disease of immunodeficiency but there is some thought that it is also a disease of immunodisregulation, resulting in airway damage,” explains Hodder. A number of database retrospective studies, metabolic investigations and a comparison of outcomes in HIV-infected men versus women are also part of the HIV research agenda in Newark.
The hub of clinical activity, the IDP and ACRC, with one-stop medical care by teams of specialists, is funded annually with $1.5 million in grants from the Ryan White Program. A hemophiliac, Ryan White was the Indiana teenager who became a poster child for HIV-AIDS in the '80s. After his death in 1990, Congress passed the Ryan White Care Act, one of the largest providers of services for families and patients with HIV-AIDS.
Hodder, who is also medical director of the NJMS-University Hospital (UH) clinical research center (CRC) — in its formative stages now, the CRC will provide infrastructure for investigators seeking to develop clinical research programs — arrived at NJMS four years ago after successfully launching an HIV medication for Bristol-Myers Squibb. She had spent years in academic medicine at University Hospitals, Case Western Reserve University, in Cleveland, and a career in the pharmaceutical industry was never in her game plan. But neither was New Jersey before her husband convinced her to move from Ohio. She couldn’t imagine living here and now she can’t imagine living anywhere else. “The medical issues are so tough for these patients. The need is so great. For instance, we know so little about HIV in women. We don’t even know the rate of new HIV infections in high risk U.S. women, something you must have in order to appropriately design and power a trial testing interventions to prevent HIV infections in this population.” To answer this question, one of the newest trials, the HIV Seroincidence Study in Women, HPTN Study 064, also called ISIS, is enrolling 400 women in Newark as well as another 1,600 women in five additional cities, New York, Washington, DC, Baltimore, Atlanta and Raleigh-Durham. Hodder is the national protocol chair for this study.
There is currently no cure for HIV/AIDS and due to recent trial failures of vaccines that once looked hopeful, “we are back to square one now in the HIV vaccine field,” says Hodder. If diagnosed in a timely manner, however, HIV can be successfully controlled, but only when patients take their drugs and good care of themselves with regular medical monitoring. “There are some models to suggest that people can then live a normal lifespan.”
New patients struggling with this frightening diagnosis, like the woman who became infected on vacation, are always seen within five days at the IDP, which was a beehive of activity on the day we visited. Helen Makinde, MD, an infectious diseases fellow who completed her residency at NJMS in 2007 and elected to pursue specialty training in infectious diseases at NJMS, is stopped by her boss in the hallway.
When asked, “Why are you here?” Makinde hesitates for only a moment. “I’m here because this place is phenomenal and these patients are so important. They need our compassion, support and medical care. We give to them but we also learn from them every day.”