When AIDS was first named - Acquired Immune Deficiency Syndrome - its transmission routes, or even whether it involved a specific pathogen, were mysteries. We know now that it an infectious disease caused by a virus most commonly transmitted through sex. The existence of a sexually transmitted, potentially deadly virus has affected the sexuality of everyone on the planet, and produced major upheavals in how societies and cultures perceive and talk about sex. Groups that rarely discussed sexual behavior were finally forced to address it.
A smartly dressed couple check into a four-star city hotel armed with a bottle of champagne and condoms. In a building across the street, a couple who has just met is putting on a condom. In a parking lot of the local high school, in the backseat of a car, two young people, high on dope, are removing one after finishing sex. Out in the suburbs, a man puts one on before he has sex with his regular partner at his home. In a bathroom of a public transportation system, another man is performing oral sex on his male partner.
I'm originally from Tehuaca, a small town in Mexico. I was raised to believe that I shouldn't have sexual feelings; that those were feelings only men have. I was taught that a women's purpose in life was to serve her husband and her family. I lived a sheltered life, and left a home dominated by men to marry at 16 and enter a home dominated by another, much older, man. I was taught that I should take insults and mistreatment, and that a women's role was to be a martyr. I believed that my role in life was to serve my husband.
In the U.S., HIV infection rates are rising fastest in women. Globally, women now account for half of people living with HIV. In the U.S., where 25% of all women are African-American or Latina, they account for 83% of all new HIV cases, with most of these infections occurring in African-American women. Other populations traditionally considered "at-risk," such as men who have sex with men (MSM) and IV drug users, have seen HIV infection rates drop in the 25 years since the epidemic began. Now, heterosexual African-American women have also become a significant risk group. Having a history of sexual abuse, poverty, violence, or limited educational and economic opportunities can also increase the risk.
Having made the journey from being diagnosed with HIV and hepatitis C, coming out of jail, entering a therapeutic community, and detoxing from methadone, it is truly a blessing to address a topic dear to my heart: helping women with HIV find a healthy, satisfying sex life.
A recent documentary film, Gay Sex in the 70s, covers "the sexually explosive 12-year period (1969-1981) between Stonewall and the onset of AIDS" and leads to two related questions: How has gay male sexuality changed as a result of the HIV epidemic? And what are the implications of those changes for HIV prevention efforts?
When it comes to HIV, gay men literally wrote the book on how to prevent the disease. During the 1980s and early 1990s, new infections among gay men dropped by historic proportions. Today, when most health experts talk about prevention for gay men, they focus on groups that have traditionally been hard to reach with safer-sex information: young gay men and gay men of color.
As a gay man coming of age in the 70s, sex clubs and public sex spaces were an important part of my sexuality. But I maintained a difficult love/hate relationship with these spaces. While they provided near-instant gratification at almost any time of the day or night, they certainly did not provide what I was really looking for: a life partner. Like many gay men I met, I had many partners but, in my case, little satisfaction. And when AIDS appeared I found another reason to dislike these spaces: not only did they not fill my emotional needs, but now they were dangerous to my health, too.
Approximately 40 million people are currently living with HIV worldwide, almost 5 million of whom were infected in 2005 (UNAIDS). In addition to expanding the availability of antiretroviral (ARV) treatment in developing countries, the scale of the epidemic requires the continued promotion of available prevention tools and the exploration of a range of novel technologies. Research and development are ongoing for several promising new prevention strategies, including male circumcision, microbicides, pre-exposure prophylaxis, and preventive HIV vaccines. Efforts also continue to promote known strategies, including prevention of sexually transmitted infections (STIs). In many cases, the methods in development are initially expected to have partial efficacy and are intended to be used in conjunction with male condoms. In addition, no one method can meet the needs of all individuals; therefore, a range of complementary prevention tools will be needed to stem the epidemic.
It is important to tread carefully when taking a sexual history, not only because the answers are important but also because your client or patient will want to know why you need all that personal information. Since people can be uncomfortable when asked about their sexual history, providers must remain mindful of why each question is asked and what action will follow from the answers given.
The HIV/AIDS epidemic continues to have a disproportionate impact on Black and Latino populations. The Centers for Disease Control and Prevention reported that in 2004 among the 35 states that report confidential name-based HIV infections, 65% of people living with HIV are Black and Latino. Men who have Sex with Men (MSM) continues to be the predominant group of HIV transmission reported among men. HIV/AIDS interventions focused on behavior and education have been successful in reducing HIV prevalence rates among White MSM, but failed to reduce transmission rates among communities of color.
It was the summer of 1982 and I was watching the evening news at a friend's home in the Bronx. The anchorman, with some alarm in his voice, walked us through some disturbing images of intravenous drug users and gay white men who were believed to be the primary carriers of some new disease. There was no shortage of "expert" opinions from men in lab coats trying hard to disguise their lack of real understanding of what all this meant. We then witnessed a resurgence of every sexphobic and homophobic belief that permeates this post-Victorian culture.
As the contibutors to this issue of ACRIA Update make clear, the twin epidemics of HIV and HCV continue to seriously impact the health and well-being of prisoners across the U.S. For those who have never been incarcerated, it is all too easy to ignore the epidemic that is raging behind the bars of this country's prison system. But with a quarter of all people with HIV receiving their care while in prison, any attempt to address the HIV epidemic must look seriously at the quality of care, and the quality of life, of people living "on the inside."
There is a public health emergency in New York State prisons. Infection rates of HIV and hepatitis C virus (HCV) are 8 to 10 times higher in prison than in the general community. Women are disproportionately affected by both diseases. The most recent NYS Department of Health (DOH) blinded seroprevalence studies found HIV infection present in 5% of men and 14% of women. HCV infection rates are 14% for men and 23% for women. The NYS Department of Correctional Services (DOCS) estimates that there are approximately 10,000 prisoners with HCV - but this is very likely an underestimate. Published studies of prisoners in the correctional systems of California, Texas and Maryland have found that 30-40% of prisoners test positive for HCV. Since NYS DOCS currently houses about 65,000 prisoners, this indicates a probability of under-reporting.
In his testimony to this committee, NYS Department of Corrections (DOCS) Commissioner Glenn Gourd testified: "I don't know of any other state health department responsible for prison medical care." Commissioner Gourd is apparently unaware that in California, where the prison system houses over 160,000 inmates in about 70 facilities, the California Department of Health Services has statutory and enforcement responsibility for specific standards, inspection and licensure of a range of hospital and correctional medical treatment facilities within the California prison system. Moreover, there are numerous major jail health care systems, including those in New York City and San Francisco, where the local city health departments are directly responsible for the oversight and quality of delivery of correctional health care services. Thus, such arrangements certainly do not lack precedent or prior experience.
My name is Ismael. I'm 44 years old and am incarcerated at the Marcy Correctional Facility in New York. When I was told that I was HIV-positive, at Rikers Island in 1990, I was in denial. It was like I was in a dream I couldn't wake up from. I kept it to myself, thinking about what I would say to my family and friends. It took me three years to finally tell my family, and they disowned me. They told me that they did not want to see me no more, and to this day they have not. In 1996 I was told that I had hepatitis C. This time I started blaming God and asking what I did in life to deserve this. I got HIV from shooting drugs, sharing needles and unprotected sex. I was selling my body for drugs to support my habit.
Historically, HIV-positive individuals with mental health disorders or substance abuse problems, or who are members of racial and ethnic minorities, have experienced difficulties accessing HIV health care and treatment and achieving successful outcomes. Furthermore, the AIDS mortality and morbidity in these groups, especially in the south, continues to be higher than other groups. These populations that are at high risk for HIV are also those that are disproportionately at high risk of incarceration in our jails and prisons.
I spent the years from 1985 through 1999 in prison, being shipped from one facility to another. During that time, the AIDS epidemic unleashed its fury on my friends and neighbors in those prisons, in the community of women I knew.
I found out I had HIV in 1999, the same year I was arrested and sent to Rikers Island. I was already on meds when I went in, but when I was arrested I missed a bunch of doses because you have to go through a process first - medical screening and all kinds of stuff. So I was denied my meds for two or three days. I told them it was dangerous for me to miss doses, but until I went through the court system, I was not allowed any meds.
Meeting the needs of people with HIV released from state prisons is challenging to say the least, and becomes further complicated when they face other health complications such as chronic hepatitis C, mental illness, and chemical dependency.
I was first told about my HIV status in 1985, when I was 30 years old. A few years later I was told that I'd gotten HCV in the same way: IV drug use. In January of 2003, I was arrested and sent to Rikers Island. I was taking methadone, but doing a lot of heroin as well - 3-4 grams a day. Plus, I was on psychiatric medications.
The medications that have so dramatically improved the course of HIV disease over the past decade can also have a negative impact on people's quality of life. Anyone facing the decision of whether to start antiretroviral therapy has to weigh the potential benefits and risks. On a large scale, the benefits of treatment far outweigh the risks - fewer opportunistic infections and lower death rates. But for each individual, the picture is not so black and white. And the message must be clear to those who are HIV-negative: while treatment works, being on these drugs can be a challenge. This issue of ACRIA Update presents this reality in clear relief, focusing primarily on the body-shape changes that many people experience.
More than just a tongue-twister, the term "lipodystrophy" can be broken down to reveal exactly what it means. "Lipo" refers to fat and "dystrophy" refers to abnormal growth or change. Put it together in plain English and what you're left with is exactly what's being seen in many people living with HIV - abnormal fat changes.
Little did I know when I tested positive in 1987 that such a cruel fate awaited me. I probably would have made a deal with the devil if I could live into the new millennium with my wife and children some eighteen years after my diagnosis and still be relatively healthy. Over the last nine years, when I look in the mirror, I think I did just that.
Since triple-drug combinations began to be used to treat HIV in 1996, lipodystrophy - including body-shape changes - has emerged as a new and increasing challenge in the HIV epidemic. Body-shape changes can have a substantial impact on quality of life, and the significance of changes to the face is a profound one in our culture. Together, they can cause anxiety about appearance and raise new concerns about stigma and confidentiality. They can also lead to medication adherence problems and may undermine adaptive denial and confidence in health.
It was 1991 and I looked healthy. I had given up all the drugs in my life - alcohol, heroin, cocaine, crack, nicotine. But I was starting to lose weight, too much weight, and I got diarrhea. So I got tested for HIV - my wife kept telling me to. They told me I was near death - my T-cells were 10. So I started AZT and got my weight back, but I stayed in the closet about my status. I wouldn't talk about the virus. I wouldn't go to any HIV programs - no groups, no pictures, no marches, nothing. I kept it from family, friends, everybody.
Over the past nine years, many people living with HIV and AIDS have been treated with highly active antiretroviral therapy (HAART) - three or four drug combinations. Just as the effectiveness of HAART varies from person to person, so too does the profile of side effects and problems related to the medications. In this article, I will focus on the experiences reported by over 300 individuals currently receiving HAART. We interviewed these people for the "Choices in Care Study," a project that we are conducting with the New York State Department of Health AIDS Institute to look at patients' perceptions of care in the Medicaid program, including both those in Special Needs Plans (SNPs) and fee-for-service clients. SNPs are Medicaid health plans for people with HIV/AIDS in New York. They offer primary care by providers who are HIV specialists, case management, and other supportive services.
"Oh, my God! When are you due?! Why didn't Beau tell me you're pregnant?!" This was the reaction of my former hairdresser (who still cuts my son's hair) after not having seen me for six months. She was so excited, making it that much more painful for me to tell her that I was not, in fact, pregnant.
Much of ACRIA's HIV treatment education work is provided for people who are active drug users or in various states of recovery. We regularly conduct workshops at syringe exchange programs and other harm reduction sites. But until now, we haven't devoted an issue of ACRIA Update specifically to HIV and substance use. Misconceptions and assumptions about the relationship between drug use and HIV disease come up all the time during our workshops. Although there are only partial answers to many questions about drug use and HIV, a lot of data exist that can give us a better understanding of the relationship between the two.
The struggles to keep drug users alive and healthy in the midst of the AIDS epidemic have yielded many stories of survival and innovative models of healthcare delivery. Pioneering clinics and service agencies integrated HIV care, addiction treatment, mental health, support, and education. Current and former drug users pooled their knowledge about HIV, shared tips on coping with side effects, and became educators and adherence counselors. HIV transformed drug users and the systems entrusted with their care and welfare and challenged everyone to adapt and grow stronger. And finally, after nearly two decades of AIDS-related illness and deaths among drug users, the years 1996-7 brought new hope in the form of effective, three-drug combination treatment for HIV, or HAART (Highly Active AntiRetroviral Therapy).
"Huge Sale! Buy Crystal, Get HIV Free." This was the text of a provocative ad that appeared on Verizon phone booths in the Chelsea neighborhood of New York City in January 2004. The ads were conceived and paid for by Peter Staley, a longtime AIDS activist and recovering crystal meth addict. Staley contends that the ads were meant to provoke discussion and, ultimately, action by others. This mission was accomplished, judging by the recent upswing in media attention focusing on the use of crystal meth (and its connections to HIV), the appearance of public service announcements by Gay Men's Health Crisis and other groups, and a slew of well-attended community forums focusing on the widely unacknowledged crystal meth problem in New York City.
A drug interaction is what happens when one drug that you take affects the way another drug you take works in your body. An interaction can affect your body's ability to break down one drug or both drugs. It can also affect the strength or effectiveness of one drug or both drugs. Drug interactions become more complicated - and more likely to happen - the more drugs you take. In many cases, interactions aren't a problem. There are lots of drugs that don't affect each other at all. But some medications should never be used together because they combine to create a toxic reaction. Such interactions are dangerous, even life threatening.
I had heard rumors about the ingredients, but didn't care. It looked clear and pure enough, especially after the first hit. I had also heard (from another addict) that an Australian study had shown that regular crystal use would lower the amount of HIV in the body. It's amazing how much an addict - no matter how educated - is willing to suspend disbelief to indulge his habit. Though I knew that this supposed finding from the Australian study wasn't true, the excuse was convenient and compelling. And some things were absolutely certain - crystal made me feel good, made sex fabulous, and put me on somebody's A-list. All it took was a harmless bump up my nose ... at first.
Injection drug use accounts for about a third of HIV cases in the United States, and alcohol and other drug use is common among many people living with HIV. In 2001, the Archives of General Psychiatry published the results of a national survey of 2,864 people with HIV who were accessing medical care. Nearly 40% reported using an illicit drug other than marijuana during the previous year, and over 12% reported drug dependence. Questions arise about the influence these substances may have on the progression of HIV and about the impact substance use may have on access, adherence, and response to treatment.
Many heroin users who want to and are ready to stop using may not be aware that there is a pharmaceutical alternative to methadone that can help them achieve their goal. Buprenorphine, a drug that's a derivative of opium, was approved in 2002 by the Food and Drug Administration to treat opioid addiction. Injectable buprenorphine has been available for many years to help manage pain under the brand name Buprenex.
This issue of ACRIA Update focuses on the relationships between individuals and their healthcare providers. We thank the writers who have shared their personal experiences – the good, the bad, and ugly – as well as the healthcare providers who have been willing to offer their perspectives. We hope that some of the tips included in these pieces will help you to develop a more productive relationship with your provider or, if necessary, help you move on and find a provider with whom you connect.
I have the best doctor on earth – caring, compassionate, knowledgeable, funny, and, possibly, a liberal. But this hasn’t always been the case. Having spent several years as a health educator, talking to both patients and healthcare providers, I thought of myself as confident and savvy enough to choose and have a relationship with a good, new doctor when the time came. Was I wrong. I had moved to a new city in 2000 and, being new in town and having a rather small pool of doctors in my health plan to choose from, I just went down the list and randomly selected a doctor for an annual physical and to check a minor pain I had.
Prior to ending up living in the sparsely populated area of Michigan's Upper Peninsula, I had resided in Portland, Oregon. That metropolis is also where I tested positive in 1987. It was in Portland that I encountered a few phobias of healthcare workers on the occasions that I did seek consultation at the county medical clinic. One incident in particular stands out in my mind. One doctor had an aversion to making any kind of physical contact. He didn't mind chatting up a storm, though.
Over the past 20 years of caring for people with HIV/AIDS, there have been challenges and rewards. The rewards outweigh the challenges. I like to focus on the rewarding parts of my practice. The greatest reward for me is getting to know each of my patients and to see them stay healthy. If you're struggling with your health, with adherence to medication, to understand what your provider is talking about, or to keep up with your medical appointments, then please read on.
Although I no longer subscribe to the traditional roles of the doctor leading and the patient following, I have often asked myself, "what would I do without my HIV doctor?" Shortly after my diagnosis, I became very sick and considered my doctor to be a lifeline. I depended on him to be knowledgeable and up-to-date, to recommend the best course of treatment, to listen to my concerns, to reassure me and give me hope…a tall order!
Sometimes the numbers just don't add up. You're sitting there in an exam room and everyone is telling you how wonderful you're doing. Your numbers are just great! Your T-cells are way up and your viral load is way down. What could be better? The answer is - you. In this high tech medical world of measuring and monitoring every branch of DNA, viral particles, and countless other laboratory parameters, sometimes something very strange happens. The patient (and that would be you and me) gets lost in the lab limbo tango. What makes matters worse is that people with HIV sometimes jump right into this dance with glee.
At times, a meeting with your doctor can feel like a battle. Perhaps you've read about a new treatment that sounds exciting. Who knows your body better than yourself? You've read the drug information book, you know what symptoms to expect. You're being an educated patient. And yet here's the doctor shooting holes in your arguments and resisting your suggestions of new treatments to look into. What's gone wrong?
As the Director of Clinical Care of the William F. Ryan Community Health Center, I provide medical care to people living with HIV as part of a multi-disciplinary treatment team. The Ryan Center is a not-for-profit community health center that provides primary and preventive care, including integrated HIV clinical and support services to underserved, minority communities in northern Manhattan. As part of my duties at the Center, I spend a lot of my time administering quality assurance projects, but I also have the pleasure of providing an orientation to medical services for each new HIV-infected patient. I have found the approaches discussed below to be helpful in establishing good working relationships with my patients.
My journey to find the right doctor has been long, difficult, and frustrating. Before AIDS, I had viewed doctors quite simply: they were godlike beings who gave you pills that made you better. So in 1982 when I was told I might have AIDS, I was surprised that my "infallible" doctors didn't know what to do or even exactly what it was. In hindsight, this was a blessing in disguise - it forced me to re-evaluate my relationship with doctors. Suddenly I was on my own. When told there was no treatment, I said, "Thank you, I'll take care of it myself." I went to the health food store, began reading what little was available, and ate up every news story that mentioned AIDS.
It's hard to talk about my relationship with my physician without first talking about my experience before I became sick with the dreaded PCP (Pneumocystis pneumonia). Prior to getting PCP, I was not a compliant patient, nor was I very open and honest with my physician. I only took my medications if I was around someone who would notice that I wasn't taking them. My doctor's office is an hour and a quarter each way by car, and every time I went, I knew that I would be forced to wait at least an hour. I'd cancel my appointment if I could think of any good excuse to do so. Hang nail or headache anyone?
This information is designed to support, not replace, the relationship that exists between you and your doctor.