Since the advent ten years ago of the life-extending treatments known as HAART, many of us have focused on the myriad of issues that have arisen from vast numbers of people living longer with HIV. We have been working toward the goal of making HIV disease a more manageable, long-term condition and improving people’s quality of life. ACRIA in particular has worked to identify and bring to popular attention, including the attention of elected and public officials, the challenges faced by people living with HIV disease and the new physical, mental and social problems that come with getting older.
Diving into the world of HIV treatment for the first time can be intimidating: dozens of meds, lab tests, medical terms and differing opinions that may make you feel like you need to go to medical school in order to make the right decisions.
Exposure to HIV and infection with HIV are not one and the same. You can be exposed to HIV numerous times without getting infected. But once HIV is transmitted, a series of events occurs. Acute, or initial infection, is the first stage after transmission. About three to four days after initial transmission of HIV, people experience a dramatic rise in their viral load (the amount of HIV in the blood). The virus multiplies very quickly and spreads into all parts of the body, including the lymph nodes, genital tract, and central nervous system.
Choosing a good health care provider, be it physician, nurse practitioner, or physician assistant, is a complicated process that can leave people unhappy and frustrated. But finding a good provider is important. Here are some observations on how you can increase your chances of finding the right clinician for you.
I am not a good person about going to the doctor. Whenever I went, they wanted to take blood to see what was wrong with me, and I didn’t want that because it might come back HIV positive. I remember when I lived in California a couple of years ago, I got shingles. I was told it was due to stress and I was like, “Okay - I just lost a friend in a car accident, which I saw, so it must be that.” The doctor never told me that shingles is an HIV-related illness, so I went on thinking I was okay.
ACRIA was founded in 1991 to address the need for more community involvement in AIDS research. Since then, we’ve conducted many clinical trials of both pharmaceutical drugs and alternative treatments for HIV and its related conditions. And though research for new treatments is important, understanding the daily issues faced by people with HIV is also essential, so ACRIA has begun to do behavioral research that doesn’t involve drugs.
New York State offers a number of ways for people with HIV to get coverage for their medical expenses. You don’t need private health insurance to get expert medical care and access to medications. If you don’t know where to begin, find someone who does: talk to a local AIDS service organization, ask your case manager, or call the numbers below.
The AIDS Drug Assistance Program (ADAP) is a national program that was started by the U.S. government in 1987 to provide free or low-cost drugs to people with HIV who have limited financial resources. Generally, these are people who have an income that is too high for Medicaid, but who don’t have private health insurance because their employer doesn’t offer it or because they can’t afford it.
It's finally happening. After years of pressure from people with HIV and AIDS activists around the world, treatment is becoming available to those living in poor countries. Though access is still limited - only 24% of the nearly seven million people who need HIV meds can get them, far less than accepted international goals - these numbers were unthinkable just a few years ago. We are grateful for private funding sources, including the Clinton and Gates foundations, for developing and supporting workable, community-based solutions to treatment delivery over the long term. Good things are also being done by local organizations such as New York City-based Aid for AIDS in recycling medications, as discussed in an article by Roberto Perez.
When I first started doing HIV and AIDS work in Africa, the only option for most of the people I served was making death as comfortable as possible. My most common experience during the first couple of years was, for example, sitting by the bedside of a woman in Zambia named Patience - offering final prayers and then being told a week later that she had passed. Or visiting an organization in Zimbabwe one month and returning six months later to be told that the empty chairs I saw were those of colleagues I knew who had been taken by "Mukondombera," the euphemism for AIDS which in Shona means, "the thing that comes and wipes out entire villages."
It can be hard for people with HIV to get to their doctors. When you're poor, with no car, and not feeling well, you'll be looking for quarters and wondering if you have the energy for a long trip on a crowded bus. If you live in an area of a city underserved by public transit, if you live in the poor section of a suburban town with no bus service, or especially if you live in a rural community, you may find it hard to travel to your doctor's office, to testing centers, or to the pharmacy. And in some parts of the country, HIV docs are hard to find outside of major urban areas.
In my country, we look at AIDS in a traditional way. We have unrealistic beliefs - when you have HIV they think it may be the ghost. But I was in a dilemma. I was sick on and off for a long time. My wife was pregnant and tested negative but I kept asking myself, "Why am I always getting sick?" When I went to the hospital they told me I had TB, but after being treated I wasn't getting much better. I was afraid to be tested for AIDS because I was told, "If you have HIV, you are going to die." Then I decided I was thinking too much about the illness and I wanted to know what was the problem.
"It is crucial for us to stop the [trade] negotiations, because our lives are at stake. We are fighting against drug patents with our lives. I know I might get arrested or injured in clashes with police, but we are all willing to face that, because we have more to lose if the talks succeed."
On a Sunday afternoon in June of 1999, I got a phone call about a meeting being held that night to plan a "party." As a veteran of numerous AIDS protests with ACT UP/NY, I knew that meant an action was taking shape, but I had no idea that this meeting and the subsequent actions would reshape the nature of my activism and would play an important part in changing the way the U.S. responded to the global AIDS crisis.
"The convergence of global stakeholders at AIDS 2006 has provided an ideal opportunity to examine the gap between what society is capable of doing in the face of this unprecedented humanitarian crisis and the actual level of response"- Dr. Helene Gayle, President, International AIDS Society ,speaking at the XVI International Conference on AIDS in Toronto
Foreign citizens living in the U.S. frequently encounter challenges related to their immigration status. Who hasn't heard the plight of a coworker, friend, or family member whose application for a visa, work permit, or green card has been inexplicably lost, delayed, or denied? And any person, foreign or native-born, may experience health-related difficulties - especially those living with HIV.
I was born in Honduras in a small agricultural mountain village. Due to a rare blood clotting disorder, as a child I needed blood transfusions and came to the U.S. several times through a medical humanitarian relief program. This was facilitated by a woman who was involved in the medical relief program and who returned several times to visit me. She has become like my second mother and I'm eternally grateful that I met her.
There are significant numbers of immigrants living with HIV in New York, receiving medical treatment and other services important to a healthy quality of life. Some arrived as refugees seeking asylum. Others, however, are not aware that in their native countries they lived under circumstances that make them eligible for political asylum. Care providers as well as their clients often have questions about the meaning of political asylum, the process, and available resources.
In this issue, we examine the intersection of HIV disease and mental health problems. As a nurse who spent 15 years working in mental health and HIV/AIDS, understanding the mental health needs of persons living with HIV is of particular concern to me.
Everyone feels sad or discouraged sometimes. Emotions such as grief and unhappiness are a normal part of life, especially when a person is experiencing high levels of stress or dealing with major losses and life readjustments. Events occur in most lives that are upsetting or stressful, but one may be unhappy without necessarily being clinically depressed. The distinction between "ordinary unhappiness" and clinical depressive disorders depends on the duration and severity of the low mood and the occurrence of related problems, such as loss of interest in most or all activities, changes in appetite/weight or sleep, low energy, persistent thoughts about death, guilty feelings, and other symptoms. The extent to which a depressed mood interferes with work, relationships, and recreation is also considered in distinguishing between sadness and clinical depression. In this article, the term "depression" refers to clinical disorders, not everyday sadness.
In 1987, my partner and I had the conversation about what would happen if we tested HIV positive. We decided that we would take care of each other if one or the other became ill. We had been together since college, when he was 19 and I was 22. We got tested and both came back positive. He died in 1993 after a long struggle with different complications. We had been together 14 years.
In ACRIA's 2006 study of HIV in 1,000 New York City residents over the age of 50 (ROAH: Research on Older Adults with HIV), it was found that the number of people reporting significant symptoms of depression was 13 times higher than that found in the city's general population. As this older population steadily increases and ages (in NYC 30% of all people living with HIV are over 50 and 70% are over 40), there is a critical need to address this treatable disease. Why are there such high levels of depression in older people with HIV? And more important, why is the health care system not more responsive to this medical need? While many illnesses are common to both HIV and aging, the lack of focus on the management of depression is disturbing.
I came to the U.S. from Mexico four years ago, when I was 25, with father of my second child. When I told him I was pregnant., he beat me, hoping to end my pregnancy. I finally left him - escaped, really - when a neighbor of mine told me that he saw him beat my child when I left the house.
Many medications, including psychiatric meds, interact with HIV drugs. These interactions can affect the levels of the HIV drug, the psych drug, or both. Be sure your doctor knows all drugs you are taking, including ones you buy without a prescription.
I've been HIV positive for 15 years. I'm 46 years old with two teenage children and am originally from Ecuador. I could say that 1990 was a year marked by happiness and sadness because I married, became pregnant, and my husband became ill and was diagnosed with AIDS. I was also diagnosed with HIV after I gave birth to my son. In 1991 my husband passed away, leaving me with an illness of which I still didn't know much. He also left a widow with a son who was almost a year old and a daughter who was three years old.
According to the National Institutes of Health, women are far more likely than men to suffer from depression. Some NIH statistics show a two-to-one ratio of women with depression compared to men, regardless of race, ethnicity, and/or economic status. Studies so far have not clearly shown why this gender difference exists but it is believed that certain experiences that are unique in women's lives are at play, such as social and biological factors. A primary reason that is often cited is the burden related to many women's role of being primary caregivers. Often women forsake getting health and mental health treatment for themselves when they have caregiving responsibilities. Lack of economic resources, education, and social support are also factors that seem to contribute to women's higher incidence of depression.
I was diagnosed with anxiety and panic disorder in 1993. It started with worries about my health, especially since I have been overweight my entire life. I also was unhappy with my job, which had become monotonous and stressful. I began to have muscle pain, I wasn't sleeping well and would suddenly become dizzy and irritable. My edginess and worries began to increasingly affect the work that I was doing; I began to take time off and still my doctors could not figure out what was happening with me.
Within the last decade, the medical and psychiatric communities have begun to recognize a subgroup of people with HIV who suffer from severe persistent mental illness and substance use disorders. In spite of the challenges and barriers to providing quality health care to these patients, the health service community has developed and designed effective health care and supportive service programs for this triply diagnosed population. This article is a review of the different approaches to care and the best practices that have been developed to effectively offer care to this unique population.
25 years after AIDS was first identified, development of new drugs has seen a sudden upsurge. While only one new drug was approved in the last two years, a number of compounds are now moving into advanced trials, offering new hope for people who have become resistant to many of the approved HIV medications
I have been an AIDS activist since 1986 but just when I thought I'd seen it all, the seesaw phenomenon that is drug development caught me off-balance again. Entry inhibitors (EIs) have made HIV drug development an even more dangerous roller coaster ride for both companies and people with HIV. Here is one activist's take on the history of another "promising new class" of HIV drugs.
In 2006, the ten-year anniversary of HAART (highly active antiretroviral therapy), we have over 20 HIV medications in our arsenal. But the need for a "new wave" of HIV medications that can target new steps in HIV's life cycle remains strong. HIV can change and develop resistance to HIV medications, seriously affecting the ability of people with HIV to construct a viable treatment regimen. However, the development of new drugs that attach to different parts of HIV or CD4 cells offers hope for expanding HIV treatment choices, particularly for those whose virus has developed resistance. Integrase inhibitors are one new class of HIV medications currently being investigated.
Ten years ago, when HAART (highly active antiretroviral therapy) made its debut, the theory behind using a combination of HIV drugs seemed easy enough to understand. Preliminary data suggested that HIV could be cured - "eradicated," as experts were prone to say - if people on HAART could simply keep their viral loads undetectable for a little more than two years. Two years of treatment? No problem.
Aptivus is the latest protease inhibitor (PI) to receive FDA approval. For a while, it seemed like dosing problems might derail its development, but the drug's benefits for people with PI-resistant HIV led to a narrowly defined approval in June of 2005.
In a little over four months I will turn fifty. When I was diagnosed with HIV in 1988 I never dreamed I'd reach forty. I've survived a long battle with HIV, and it has not been easy. It's taken a concentrated and impassioned effort to gain every piece of knowledge I could in order to stay ahead of this deadly virus, one that has a basic survival instinct not unlike my own.
Twenty years ago, participating in a clinical trial was usually the only way to access an experimental HIV drug. Doctors who kept up with new developments worked hard to get their patients on drugs as soon as they became available. Unfortunately, many doctors and patients ended up adding one new drug at a time. We soon learned - painfully for many patients - that this type of "sequential monotherapy" usually has only short-term benefits. And it has the primary effect of burning through all available antiviral drugs, helping the virus accumulate additional mutations that reduce the efficacy of any future regimen.
Activists have long pushed for clinical trials that combine two new drugs for people who have no active agents, and one company, Tibotec, has recently begun the first such trials, of a protease inhibitor, darunavir (TMC 114), and an NNRTI, etravirine (TMC 125).
New hepatitis C drugs are desperately needed by people coinfected with HIV and hepatitis C. About 25 to 30% of people living with HIV in the United States are coinfected with hepatitis C, with high rates of coinfection among current and former injection drug users. HIV accelerates the liver damage that is caused by hepatitis C, and liver disease from hepatitis C has become a leading cause of death among people with HIV.
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.
This information is designed to support, not replace, the relationship that exists between you and your doctor.