Managing HIV is dedicated to providing high-quality information to people with the human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS). Thanks to advances in diagnosis and treatment, more and more people are living with HIV and AIDS. Managing HIV offers these individuals—and their friends and family—a broad range of information on AIDS and HIV. Managing HIV covers HIV symptoms and the latest AIDs and HIV medications and provides expert advice on when to start treatment and coping with treatment side effects. All of this information is available in video, audio and text formats. Whether you're looking for a health professional to clearly explain a new therapy or people who are living with HIV and AIDS to share their experiences, Managing HIV is your online resource.
HIV & AIDS Statistics
- Approximately 50 percent of adults living with HIV are women
- The CDC estimate that up to 950,000 U.S. residents are living with HIV
- Approx. 5 million new HIV infections occurred worldwide during 2002
- Early HIV symptoms often include, swelling of the lymph nodes, headache, fever, loss of appetite, sweating, and sore throat
HIV Basics | ||||||
The Grim Reaper: Club Drugs And HIV | ||||||
Many people think that the HIV epidemic is over. But recently there has been a spike in the number of new infections. Experts say that certain club drugs that allow for wild uninhibited sex are to blame. Watch Video >> Read Transcript >> | ||||||
The Grim Reaper:Club Drugs And HIV
PERRY HALKITIS, PhD: Infection rates were stable during the 1990s, but, in the last few years, there's been a spike in new HIV transmissions across the population and especially among gay and bisexual men. ANNOUNCER: Explaining this turnaround is not so simple. PERRY HALKITIS, PhD: First of all, there's a fatigue around HIV that we're seeing in the gay population and in the general population. People feel that the HIV epidemic is over, they're more complacent about safer sex practices, they think there's a cure and, as a result, people are not being as safe or as responsible in their sexual behavior. So number two, I think what's happening is that prevention efforts really haven't evolved and haven't become as sophisticated as people have become sophisticated around HIV. So "Use a condom every time" campaigns, which worked fine in the early 1980s and the mid-1980s are no longer effective. What we're also seeing is this complex interaction that exists between sexual risk-taking and drug use. And in particular with a subset of drugs known as "club drugs." ANNOUNCER: And if hearing the term "club drugs" conjures up images of a disco ball or a rave you'd be mistaken. PERRY HALKITIS, PhD: Our research shows very clearly that people do them at home, they do it with their friends, they do it in the park, they do it wherever they need to do it. ANNOUNCER: So what are the so called "club drugs?" PERRY HALKITIS, PhD: You know, twenty years ago, we would have been talking about cocaine as the primary drug, but that doesn't seem to be the big problem. It is a problem, but not the biggest problem these days. We're talking about methamphetamine, also known colloquially as "crystal." We're talking about MDMA, which is known commonly as "ecstasy." We're talking about ketamine and we're talking about Rohypnol and we're still talking about cocaine, to some extent. And we're talking about, more importantly, not just each of these drugs in isolation, but each of these drugs being used often in combination with each other, in combination with alcohol, in combination with prescription drugs such as Viagra. ANNOUNCER: And that, say experts, is a menacing mixture. PERRY HALKITIS, PhD: Perhaps the most worrisome is methamphetamine crystal. This is a psychostimulant, it's a form of speed; it's related to ecstasy. It's related to other amphetamines and it has been a huge problem. Crystal is a hypersexual drug. It's a hugely disinhibiting drug, so that we know, and it's been clearly documented, that people who are using this substance have sex without rational thinking, they have multiple partnerings; they just let go. They feel like they're on top of the world, so nothing is a problem and any rational thinking, any logical thinking around safer sex practices completely gets wiped away.Do they realize after they come down from their high that they've had unsafe sex? Yes, they do. Can they do anything about that? No, it's too late. ANNOUNCER: And as users try to keep the high going, they move from snorting to smoking and eventually to injecting. PERRY HALKITIS, PhD: We not only have a drug in which people's inhibitions are erased, basically, around safer sex, but now men, women, whoever are using these substances, whoever is using meth is injecting. And so transmission through injection and the sharing of needles and the sharing of works creates another route of HIV transmission that is linked to methamphetamine use. ANNOUNCER: And using crystal can have severe consequences for HIV positive people taking lifesaving antiretroviral medications. PERRY HALKITIS, PhD: What we know, from our work, is that adherence, taking your medications the way you're supposed to take them, is a problem across the board. And if we believe the literature, people are supposed to be adherent 95 percent of the time. Very hard for people to be adherent 95 percent of the time when they're high. When they're feeling good, the last thing they want to do is actually stop to remember to take their medications. Number two, we know that methamphetamine is an immunosuppressant. Methamphetamine that is sold on the street is not pure methamphetamine. It's been cut with talc; it's been cut with heroin; it's been cut with a variety of other substances. That has an effect on people's immune systems. Number three and probably most alarming of all is some recent studies that came out that indicate, even if an individual is highly adherent to his or her medications, even if. If they're using methamphetamine, replication of the virus in the brain is accelerated. ANNOUNCER: So whether you're a man, woman, gay or straight you are walking on dangerous ground when you mix drugs with sex. PERRY HALKITIS, PhD: To people who haven't started who hear wonderful tales about this drug: Don't. This is not a wonderful drug. The price that you will pay in the long run is not worth it. To people who are started, I say, look for help. Because what do we know about methamphetamine and its affects on people's lives? There's enormous social deterioration. People become physically ill and they become socially ill. They lose their friends, they lose their family and they lose their jobs. I think, as a society, we need to step up to the plate with HIV. Men, women, young adults who are becoming sexually active need to realize that the HIV epidemic is not over. Spermicides and Condoms: Not the Best Marriage? | ||||||
It is a well-known fact that consistent and correct use of condoms can prevent pregnancy. But condoms are not perfect. They've been known to break on occasion, and people don't always use them correctly. That's why doctors have recommended that they be used in conjunction with an over-the-counter spermicide for extra birth-control insurance. Read Article >> | ||||||
Spermicides and Condoms: Not the Best Marriage?By Peggy CraneIt is a well-known fact that consistent and correct use of condoms can prevent pregnancy. But condoms are not perfect. They've been known to break on occasion, and people don't always use them correctly. That's why doctors have recommended that they be used in conjunction with an over-the-counter spermicide for extra birth-control insurance. But say the word "condom" and what comes to mind more often is its reputation as the method of choice for practicing safe sex. Condoms are now primarily used to prevent many sexually transmitted diseases, including HIV, the virus that causes AIDS. In the late 1980s, nonoxynol-9, a product that has been on the market for more than 50 years and is the main ingredient in most spermicides, began to show promise as a method for preventing HIV transmission when it was observed to kill the virus in a test tube. The public and the medical community alike hailed N-9 as the newest HIV preventative, and many condom manufacturers hastened to lubricate their products with the chemical. Unfortunately, hopes were dashed when more recent studies — including a four-year World Health Organization study of HIV-negative female sex workers in Africa and Thailand — showed N-9 to be ineffective in the prevention of HIV infection. In fact, researchers discovered that when used frequently, products containing N-9 may even increase the risk of acquiring the virus. Understanding what N-9 can and cannot do can be daunting, much less making the right choices regarding its use. Below, Rowena Johnston, Ph.D., Associate Director of Basic Research at the American Foundation for AIDS Research (amfAR), shares the latest findings about N-9 and stresses correct condom use as still the best defense against HIV transmission for men and women alike. Are condoms a foolproof method of HIV prevention? Many people think they are at low risk for HIV, so why take the trouble to use a condom? I think what we're seeing now is kind of a fatigue. People have been aware that they should be practicing safe sex since the 1980s. Our sense is that people are kind of getting sick of being good all the time. You know, it's as if you're on a diet and sometimes you want to eat chocolate. But that's precisely why you should stick with the diet. How does Nonoxynol-9 work against HIV? Many experts still recommend N-9 as a contraceptive for women at low risk for contracting HIV. Do you agree with that? There are a lot of condoms produced today that contain N-9. In light of recent findings, is this likely to change? What is the state of HIV infection in the United States today? Do we know why? Do you think that the failure of N-9 to produce positive results will dampen hopes for a product that really works against HIV? | ||||||
Club Drugs and HIV: The Agony and the Ecstasy | ||||||
Statistics show that people who take club drugs like methamphetamine, also known as crystal, may wake up with a big problem: HIV infection. Read Article >> | ||||||
Boosting HIV Awareness With New Test | ||||||
Traditionally, getting tested for HIV has been a two-step process: arriving for the test, and returning a week or two later for the results. But the Food and Drug Administration (FDA) has approved a test that provides results in just 20 minutes, and the availability of this test could have a profound effect on HIV awareness and prevention efforts worldwide. Learn about this new HIV test and why everyone should get tested. Read Article >> | ||||||
Boosting HIV Detection With a Quick TestBy: Jeffrey Laurence, MDTraditionally, getting tested for HIV has been a two-step process: arriving for the test, and returning a week or two later for the results. Approximately 8 to 10 thousand people tested in the United States each year do not make it to that second step. According to the Centers for Disease Control and Prevention (CDC), in the year 2000, those who did not return for results included 30 percent of the people who tested positive, and 39% who tested negative. In November of 2003 the Food and Drug Administration (FDA) approved a test that provides results in just 20 minutes, and the availability of this test could have a profound effect on HIV awareness and prevention efforts worldwide. Dr. Jeffrey Laurence is the Senior Scientific Consultant for Programs at the American Foundation for AIDS Research (amFAR), and Director of the Laboratory for AIDS Virus Research at Cornell University's Weill Medical College. In the following conversation, he describes how the test's quick results could boost awareness of HIV status, and, along with counseling, radically improve HIV prevention efforts. First, what are the drawbacks of conventional testing? What is the rapid test and how effective has it proven to be? What are the implications of this rapid test? And those individuals who test positive, presumably, will be given appropriate post-test counseling, will not spread the virus to other individuals, and will perhaps make a decision to see a physician about drug treatment. So in that sense I think it's a very important test. Are there downsides to the test? I can't think of any downside with normal use of this test, but abuse could come in if there is failure to provide counseling or if the test is used illegally. There must be safeguards. Do you think this test will become the conventional test for HIV? How can people find a site that offers this test? Who should be tested for HIV? I would like to see this HIV test used routinely, and made part of a normal medical history. If there are any risk factors for HIV disease, the test can be offered, and because it's so quick, it could be offered right there and then. There are lots of reasons why people don't want to be tested. But now we have effective treatments for the HIV virus. Many people are living long lives with HIV, and people should know that we have treatment options available if we tell them they're HIV positive. | ||||||
Introduction to HIV | ||||||
This article offers a broad overview of the human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS). It describes how the virus is contracted, how it behaves in the body, and what is involved in HIV testing. Read Article >> | ||||||
Introduction to HIVBy: Brian A. Boyle, MDWhat are HIV and AIDS? The Human Immunodeficiency Virus, which is commonly called HIV, is a virus that directly attacks certain human organs, such as the brain, heart, and kidneys, as well as the human immune system. The immune system is made up of special cells, which are involved in protecting the body from infections and some cancers. The primary cells attacked by HIV are the CD4+ lymphocytes, which help direct immune function in the body. Since CD4+ cells are required for proper immune system function, when enough CD4+ lymphocytes have been destroyed by HIV, the immune system barely works. Many of the problems experienced by people infected with HIV result from a failure of the immune system to protect them from certain opportunistic infections (OIs) and cancers. Defining the terms
Before highly active antiretroviral therapy (HAART) became available, most people who contracted HIV eventually progressed to AIDS and had some AIDS-related complication, such as:
The speed of progression to AIDS A slow progress: A number of factors can affect how rapidly HIV progresses, some that can be controlled, and some that can’t. Some people have certain genes that slow HIV progression, or they are infected with a weak strain of HIV that their immune system is more able to control. In general, taking better care of yourself and following your doctor’s advice also slows the progression of HIV disease to AIDS. A more rapid progress: Factors that may cause a more rapid progression to AIDS are: infection by a virulent strain of HIV, having a high viral load setpoint (a certain level of HIV replication that varies from person to person), older age, and the abuse of drugs or alcohol. In the time between initial infection and AIDS, the infected person may feel relatively normal, despite the constant attack by HIV. People living with HIV have to understand, however, that despite feeling well on the outside, significant damage can be occurring on the inside. Fortunately, over the past five years, significant progress has been made regarding the treatment of HIV and prevention of some of the infections and cancers that may be caused by it. Antiretroviral medications can directly attack HIV and stop it from reproducing and causing further damage. For most people, the biggest factor in preventing progression to AIDS is adherence to HAART, which can suppress HIV replication to very low levels and not allow it to continue to attack the body. Prophylactic medications In the early 1980s, when HIV infections were first starting to appear, HIV was associated primarily with gay men. Then it became associated with intravenous drug users and hemophiliacs. During the past 20 years, however, HIV has become a disease that can affect almost anyone who is not monogamous with an uninfected person. HIV contraction Common misconceptions about contraction Those who should consider being tested for HIV include:
Now, there are even more reasons to seek HIV testing and medical care. Within the past five years, the medicines to prevent infections have been significantly improved and effective antiretroviral therapies have been developed that can not only halt the progression of HIV, but can also reverse much of the damage that has already been done. Therefore, it is important that HIV is diagnosed while the person is relatively healthy and before a major, potentially life-threatening OI occurs, such as PCP or cerebral toxoplasmosis. With HIV, what you don’t know can hurt you. If you think you are at even slight risk of having HIV—if you have had numerous sex partners or if you have had sex with someone who might have been bisexual or had a history of intravenous drug use—you should be tested. If you test positive, you can then receive medical care necessary to keep you healthy and prevent the diseases that occur in untreated AIDS patients. If, on the other hand, you wait until you feel sick before you are tested, you may already have progressed to AIDS and your immune system may already have incurred significant damage that may not be reversible. Pregnant women Testing is voluntary and confidential Also, there are other options including anonymous testing in a clinic or at home (for example, Home AccessR), where you are identified by a number, not by name, and no one but you knows your number. The cost of testing is generally between $30 and $100, and some groups, including many health departments, provide testing free of charge. HIV is usually diagnosed by a blood test, but newer tests can be done on saliva or urine. If you’re squeamish about getting blood drawn, there are alternatives you can discuss with your doctor. Generally, the purpose of the test is to search for antibodies to the virus. The initial test is an enzyme-linked immunoabsorbent assay (ELISA) and is confirmed using a test called the Western Blot. The antibody tests are very reliable, but may not be able to detect an infection during the first six months after an exposure. There is also a test that can test for the presence of the virus itself, and this test is called an HIV PCR. HIV PCR is used to test for HIV after a potential HIV exposure, but before antibodies have developed. Because infants may have their mother’s antibodies in their blood confounding the HIV antibody test, HIV PCR is also useful for them. However, HIV PCR may not be reliable in detecting HIV in all infected patients, especially those with a low viral load. How long do the results take? Test counseling HIV disease is a chronic disease that used to be fatal for virtually everyone who got it. Now, things have changed and effective treatments are available to treat HIV and, in most cases, these treatments can prevent HIV from doing further damage and can keep the person healthy. In order to take advantage of these treatments, you must be tested and diagnosed with HIV. All persons who may have been infected with HIV and virtually all pregnant women should be tested as soon as possible. | ||||||
Advice to Patients Recently Diagnosed With HIV | ||||||
HIV treatment has come a long way since the first reported case of AIDS in 1981, and today there are a number of effective therapies available to people living with HIV. This article explores how people who are newly diagnosed with HIV can take an active role in their own treatment, and the maintenance of their own health. Read Article >> | ||||||
Advice to Patients Recently Diagnosed With HIVBy: Bruce Olmscheid, MDIntroduction Being infected with HIV is no longer a death sentence. HIV is now looked on as a chronic manageable condition. However, having HIV is no picnic, either. Like diabetes, it can cause complications if not treated appropriately. The more you learn about HIV and how you can take an active role in treating it, the more likely it is that you will remain healthy and free of complications. To remain healthy will require your active participation. Based on our knowledge of HIV and the treatments currently available, having HIV means being infected for the rest of your life. We are hopeful that research will lead to a cure for HIV, but that cure does not exist yet. There have been dramatic advances in the treatment of HIV during the past five years. These advances will, without a doubt, continue to develop at a very rapid pace. Although you may need to be on some type of treatment for a long time (perhaps for the rest of your life), the specific treatment you and your healthcare provider choose now will most likely change as we learn more about HIV, HIV treatments, new drugs, and new drug combinations. Effective Management of HIV After learning that you are HIV-positive, it is important to see you doctor regularly. This usually means every two to three months, though your initial visits may be more frequent than that. During this time you will learn a lot about HIV and treatment options that are appropriate for you. Also, during these initial visits you will learn about T cells, the immune system and your viral load. You will learn how these numbers are used to determine whether you should start treatment early or defer to a later date. Regardless of what choice you and your doctor make, it is important that you see your doctor regularly to monitor the state of your immune system. These visits to your doctor will also allow you to learn about new developments in the treatment of HIV. When to Start Treatment Before you decide which treatment is appropriate for you, you will have blood tests done to determine whether it is recommended that you begin treatment now, or if you may safely defer treatment to a later date. The treatment guidelines have evolved and changed as we have learned more about HIV and response to treatment. For example, three years ago most experts agreed that anyone with HIV should be treated aggressively as soon as the diagnosis was made. This has been referred to as "Hit Hard, Hit Early." This one-size-fits-all approach is no longer applicable. Blood tests will determine the number of T cells (the CD4 count) and the amount of virus (the viral load or HIV PCR RNA or HIV bDNA) in your blood. These numbers will help to determine whether it is safe for you to continue to be monitored without medication (antivirals or antiretrovirals) or whether you are at high risk of becoming sick from HIV and would benefit from starting these medications now. Choosing an Initial Antiviral Regimen If you and your doctor agree that it is safe to monitor your blood tests without treatment, it is important that you have these blood tests done regularly. This means usually every three months. If your numbers suggest that you should begin treatment, you and your doctor will discuss options that are available to you. There are many approved medications available and many others in advanced stages of research and development. These medications are used together in groups of three or four medications often referred to as a cocktail. It is important that your doctor be an expert in the use of these medications. You do not need to become an expert, but the more you learn about HIV and how these medications work to suppress HIV, the better you will do with treatment. Adherence to treatment regimen is key to success Learn About Side Effects Each drug and each drug class has side effects that may occur shortly after starting the regimen. Many of these short-term side effects diminish within a few days or weeks of starting the regimen. Your doctor can give you important advice on how to manage these side effects. Some drugs have the potential to cause some serious side effects that can be life threatening. It is important that you be aware of the signs and symptoms that you must look for and report immediately to your doctor. These serious side effects are rare, and hopefully fear of them will not prevent you from starting therapy. We are learning more about the long-term side effects of therapy as well. It is not clear whether some of these effects are due to HIV itself, one or more of the drugs, or a combination of both. Many people worry about these long-term effects. It is important that you discuss this with your doctor also. Clearly, allowing HIV to progress to AIDS is much more serious and life-threatening than any of these other side effects that may occur. Get Vaccinated for Preventable Infections Whether you start therapy or determine that it is okay for you to defer therapy, your doctor will recommend a series of vaccinations or immunizations. These are just like the shots you received as a child to prevent you from acquiring measles, mumps, tetanus, or other common viral infections. It is important that you receive these shots, as they help to prevent infections that could later tax your immune system or cause serious and life-threatening illnesses. This series of shots can take up to six months to complete. It is important to keep your appointments to receive these shots on time. Take Precautions to Prevent Spreading HIV to Others Once you know you have HIV, you will probably have questions about steps you can take to reduce the risk of spreading the virus to other people. Your family, sexual partners, and roommates may have significant concerns about this also. You and your doctor will review safer sex guidelines. Sex can be difficult to talk about, but it is important that you understand safer sex guidelines, and ask any questions you may have. Sexual activities that result in the exchange of body fluids lead to a higher risk of transmitting HIV. Other sexual activities are less likely to transmit HIV. Your doctor should discuss safer sex practices with you in detail. In addition to having safer sex, you must not share needles. Although controversial, needle exchange programs have gone a long way to reduce the spread of HIV in people who use IV drugs. Since HIV is spread very easily through blood and blood products, anyone with HIV infection will not be able to donate blood. There are many fallacies about how HIV is spread. For example, some people still believe that you can get HIV from someone by eating off of the same plate, using the same glass, or sitting on the same toilet seat. These are not ways that HIV is spread. Keep Your Immune System Strong A number of common-sense issues are important. Get plenty of rest, eat a well-balanced diet, and exercise regularly. Avoid excess amounts of alcohol, and if you smoke, you will do yourself a favor by stopping. There are medications that help increase your chances of stopping and "staying stopped." Ask your doctor if those medications are appropriate for you. Avoid the use of recreational drugs. Take an Active Role in Treating HIV Find a doctor or healthcare provider who you feel comfortable with. Realize that you will be living with HIV for the rest of your life. Prepare yourself to learn about HIV and HIV treatments. You do not need to devote your life to HIV unless you choose to. You cannot learn everything overnight. There are many sources of information about HIV. Find the ones that work best for you. Find someone to talk to Conclusion HIV infection is now a manageable, chronic infection in many cases. The more you learn about HIV and the steps you can take to control it in your body, the more likely you will live a normal, healthy life. | ||||||
Changes In The HIV Epidemic: What Do They Mean For You? | ||||||
Changes in the HIV epidemic receive widespread reporting in the media. For people living with HIV, following the news about new research and treatment can be enormously confusing. Reports of new treatments may stir doubt in individuals about the efficacy of their current treatment. This article outlines how advances in HIV research have affected individual HIV cases, and how people living with HIV can make sense of new information about the virus. Read Article >> | ||||||
Changes in the HIV Epidemic: What Do They Mean for You?By: Simon Paul, MDIntroduction Changes in the HIV epidemic receive widespread reporting in the media. Everyone wants to know if people are still catching HIV, if people are still getting sick from HIV, if antiretroviral medications are still working, and so on. All of these questions are vitally important, and data about the whole population help give us the answers. In addition, the guidelines for antiretroviral treatment are based in part on such data, as are decisions about how to use resources to fight HIV. However, what is happening to the average patient, or the epidemic as a whole, may or may not be what is happening to you. You can learn from another patient's stories of successes or problems with HIV, but still have to remember that your own experience will be unique. Here, we will look at what changes have been reported for people with HIV both before and after effective antiretroviral therapy, and what these changes mean to individuals with HIV. Prophylaxis for Opportunistic Infections Even prior to the introduction of highly active antiretroviral therapy (HAART), there were improvements occurring in the health of patients with HIV. The decreases in death rates from AIDS that were widely reported after the introduction of HAART actually began prior to HAART. All of the reasons for this pre-HAART improvement may not be known, but a number of factors were probably important. Improved ability to prevent, to recognize, and to treat opportunistic infections (infections that flourish because of the impaired immune system in patients with HIV) played an important role. The increasing use of Pneumocystis carinii pneumonia (PCP) prophylaxis prevented a large number of hospitalizations and deaths. As large studies testing medications for Mycobacterium avium complex (MAC) were completed, the infection changed from being untreatable, to treatable, to preventable. What did these changes mean to a patient with HIV? If your T cells were low, leaving you more susceptible to infection, these changes were very important—the methods to prevent opportunistic infections were becoming increasingly clear. On the other hand, if your T cells were high and your immune system was normal, or close to normal, these changes did not benefit you, though they might in the future when your T cells dropped. Other changes prior to the widespread use of HAART also may have led to the initial declines in AIDS death rates. While not highly active like the three-drug regimens we use currently, two-drug therapy, for example with didanosine (ddI) and zidovudine (AZT), was demonstrated to be active in several studies. These two-drug regimens, while less durable than the current regimens, were effective in preventing both illness and lowered T-cell counts. Clearly, it was encouraging news that something was effective at treating HIV and not just preventing infections. Many of my patients were able to survive and avoid illness by using these regimens. Prior to HAART, and even now, the most important question is whether to start therapy or to wait for something better to come along. Thinking back to the time when two-drug regimen clinical trial results became available can help put this question in perspective. We now know that two-drug regimens are not durable and can lead to drug-resistant HIV. But when the initial good results of two-drug therapy became clear, patients and their doctors had to decide whether to begin two-drug therapy or to wait. The logical answer seemed to be that if patients in the clinical trial improved and were healthier on two-drug therapy, then one should start the therapy. When it comes to making important treatment decisions based on clinical trial results, there are several questions you have to ask yourself before leaping to the conclusion that successful results in clinical trials mean successful results for you.
Keep abreast of HIV treatment information Delaying therapy With the introduction of HAART, there were reports that people were feeling better and returning to work. This led to natural hopes that a cure was in sight. There was enormous publicity regarding dramatic decreases in deaths, opportunistic infections, and increases in T-cell levels. During the course of a year or two, about 70 percent of patients in many large HIV centers had begun HAART. While there have always been people who had serious problems with side effects or drug resistance, most people got off to a good start. They did feel better than they had, or, if they were asymptomatic, their T-cell levels increased and it was an enormous boost to see things improving. For most patients, the good news in the media matched their own sense of well-being. Today the reports are starting to change. This can lead to a lot of confusion for patients-"If others are having problems does that mean I will have those same problems?" A natural question, but once again, you have to assess your own situation, which may not be similar to another patient's. What are the most recent trends for HIV patients? They seem to be heading in two directions. Medications are becoming easier to take and yielding better results. On the other hand, the problem of adherence is starting to demonstrate its importance, as some people who benefited initially from HAART develop an HIV virus that is resistant to one or more medications. In one "real-world" study (as opposed to a clinical trial) using largely protease inhibitor-based therapy, only 40 to 50 percent of patients managed to maintain the goal of an undetectable viral load—which demonstrates the difficulties in maintaining adherence outside of the motivation of a clinical trial. Not all health problems are caused by HIV Each patient is different. Trying to compare yourself to this nonexistent average patient can be increasingly misleading. Clearly today, average patients include patients for whom HAART has not continued to be as successful as hoped. These patients have high viral load values and often declining T-cell counts. The average also includes patients doing fairly well on HAART, who are now having problems related to liver disease, heart disease, or other conditions. The average also includes patients who have started HAART, who have had no problems with the medications, have good adherence (perhaps to a newer, easier-to-take regimen), and who continue to improve clinically. What Patients Can Do to Help Themselves With such a mixture of problems, what can you learn that will be helpful to your own health? First, think through why some people are having problems and what you can do to prevent having the same trouble. Are they having problems from hepatitis C? Well, find out your own hepatitis-C status and if treatment would benefit you. Are patients developing HIV that is resistant to medications? Try and find out why and what you can do to improve your own medication adherence (non-adherence can create drug-resistance in some cases). Are people getting sick from side effects? Find out what side effects, and from which medications. Investigate what you can do to keep from developing these problems. For example, if a patient in the waiting room tells you stories of neuropathy or nausea, or of lipodystrophy/fat redistribution syndrome, do not assume that you will have the same problems. You may not even be at risk on your current medication regimen for some of the side effects that you fear. But do find out what you can do to avoid them, or to detect them early if you are at risk. If you hear in the news that antiretroviral medications are failing in 50 percent of patients, does that mean the other 50 percent are about to fail? Not necessarily. You need to know what to do to increase your chances of being in the 50 percent who are succeeding. Or possibly, given your current situation, studies of patients beginning treatment are not so relevant to you. If you have low T cells and a high viral load, despite being on HAART, and are without any great options, perhaps, in clinical terms, you are still doing better than before. You need to be learning about future treatments that may benefit you and not worrying about the success rates of people who are just beginning medications. HIV and AIDS receive a lot of attention in the media. Frequently the data are made excessively dramatic for the news. The results may be presented in the most negative or most positive manner possible. For patients, this skewed reporting may lead to a lack of interest in treatments that could be beneficial, or sometimes, an interest in treatments that should be avoided. Whether the information is positive or negative, there is often much that you can learn from it to improve your own health. Do not shy away from finding out more about "bad" news, and do not jump too readily to accept "good" news. Bad news could become good news if you can use it to prevent a problem, avoid a side effect, or change your treatment plan to keep your own health on the course you choose. Use both good and bad news as a means to increase your understanding about HIV, HIV treatment, and about your own unique health situation. | ||||||
HIV Prevention | ||||||
Recent statistics report that there are over 5 million new cases of HIV reported annually. This article stresses the importance of prevention, and outlines prevention techniques. For those who are HIV positive, the article describes ways to prevent spreading the disease to others. Read Article >> | ||||||
Choosing a Healthcare Provider for HIV Treatment | ||||||
Receiving an HIV diagnosis can be devastating. But if you have just been diagnosed, it is important to begin working with a healthcare provider on a treatment plan soon after diagnosis. This article outlines some useful considerations as you choose a new healthcare provider, and details what you should expect from your doctor as you work together on a treatment plan. Read Article >> |
Choosing a Healthcare Provider for HIV Treatment
By: Brian A. Boyle, MDIntroduction
If you are newly diagnosed with HIV infection, this may be a very difficult time for you. Many newly diagnosed patients have severe bouts of depression and anxiety. They simply don’t know where to turn or what they should do. This may lead to denial, procrastination, and avoidance. If you feel like this and have not taken steps to seek treatment, this understandable, but unfortunate behavior may be not only detrimental to your health and well being, but also may deny others the opportunity to be tested and treated or may lead to further spread of HIV through continuation of unsafe sex practices or needle sharing.
There are several decisions you have to make in order to be sure that you are doing what you can to:
- prevent the spread of HIV
- prevent the progression of your HIV disease to AIDS
- avoid getting sick or perhaps even dying
Choosing a Healthcare Provider
This decision involves first assessing your healthcare options, gathering some information about providers, making a choice, and scheduling an appointment. Keep in mind that your contact with the healthcare provider you choose will be confidential and that your provider will not release information about you unless you tell him or her that it is all right. Remember, just because you visit one healthcare provider doesn’t mean you have to stay with him or her. If you don’t feel comfortable with that provider or you don’t like him or her, then you should continue your search and go see another provider. If you are a part of an HMO, you may need to pick a doctor from the list of providers in your HMO or you may be referred to an HIV specialist by a primary-care doctor. Someone at your health plan should be able to provide you with information about how to find an HIV specialist so that you are able to have several choices.
The medical qualifications
Healthcare providers include physicians, physician’s assistants, and nurse practitioners. Physicians have been to medical school, followed by a residency in internal medicine or family medicine, and in some cases, a fellowship in a subspecialty such as infectious disease. Nurse practitioners and physician’s assistants have not been to medical school nor have they done a residency or fellowship, but they have received a substantial amount of education and training and in some states, they are allowed to treat patients without physician supervision.
Some people feel more comfortable with a doctor, while others feel more comfortable with a nurse practitioner or physician’s assistant. You can receive excellent care from any of these healthcare providers so long as he or she is well versed in treating HIV disease and has adequate experience. This is an important attribute to remember, as several studies have shown that physician experience plays a major role in how well a person with HIV disease does, including whether they get sick and how well they take their medications.
Support staff
Also, it is important to keep in mind that when you choose a healthcare provider you are also choosing that person’s support staff and system. Since there are a number of social issues and questions associated with HIV disease, you want to make sure that the doctor has someone on staff or someone to whom he or she can easily refer you who can help you take care of insurance and billing issues, drug or alcohol problems, disclosure issues, and other concerns that patients with HIV disease frequently must confront. These issues are complex and frequently require expert assistance from a very knowledgeable person. You are going to have enough to deal with. You should not have to be constantly struggling to get the benefits and help that you need.
Getting the provider you want
Since you are unlikely to know many healthcare providers, one of the biggest questions you might have is, "How do I find the healthcare provider that I want?" You can start by asking relatives and friends, especially those who are HIV-infected. If your family and friends do not yet know about your HIV infection, before approaching them, you should consider whether or not you want them to know. If you don’t, there are other ways to find a doctor. You can call a local medical society or a local patient advocacy/support group. For example, you could call a Gay Men’s Health Crisis center in your area or a methadone maintenance clinic. You could also call a local hospital. They may be able to provide you with a list of the experienced healthcare providers in your area. Additionally, you could ask your current healthcare provider to refer you to an HIV specialist (i.e., someone who treats a significant number of HIV-infected patients).
If you cannot find a provider with adequate experience in your city, consider contacting services in larger cities that may be nearby. Some of my patients travel quite a distance to see me because they could not find anyone locally with whom they were happy and our center provides not only excellent healthcare, but also provides them with access to new treatment studies and the support services HIV patients need.
Doing research
Once you have identified a potential healthcare provider, consider calling their office and getting information about:
- the number of patients they treat
- the number of years they’ve been involved with HIV
- their educational and training background
- any support staff they can provide for you (e.g., social worker, psychiatrist, nutritionist)
If you are satisfied with the preliminary information, then schedule an appointment for an initial visit. If not, keep looking. I can assure you that with a little effort you will be able to find an excellent provider who will be able to meet your needs.
The initial visit can be frightening and intimidating, but you should keep in mind that the entire purpose of the visit is to provide you with the medical and other help you need to control HIV infection. You may not feel very comfortable during this visit and a lot of things will be happening, but you should try to assess whether you will eventually be comfortable in this setting, receive the support and services you need, and have confidence and trust in your healthcare provider.
The paperwork
Your healthcare provider and his or her staff will guide you through the steps involved in the initial visit. This generally starts with a lot of paperwork, with which the staff can help you. This process will be smoother if you bring any insurance information or past healthcare records you might have with you. It will also help if you are on time or even a little early so that you have plenty of time and do not feel pressured or rushed.
Meeting with the healthcare provider
Usually, after the initial paperwork is completed you will meet your healthcare provider. He or she will often begin the meeting by obtaining a thorough medical history and doing a physical examination. This might include having blood drawn and sent to a laboratory for testing. He or she will provide you with a basic education and information regarding HIV disease, including the basic disease process and treatment options that are available. It is important that you tell your provider about any medical problems you have had in the past and if you are allergic to any medications.
Making a custom-fit treatment plan
You should use this time to discuss your treatment objectives with the provider. Every patient has different goals and ideas about their treatment. You should talk about these with your doctor and make sure that he or she feels comfortable with them and is not using a "cookie-cutter" approach, where every patient must do the same thing (for example, take antiretrovirals). Your doctor should show flexibility and adjust to your needs, while at the same time providing you with the education you need to make informed and knowledgeable decisions.
If you have not previously had a CD4+ lymphocyte and HIV viral load performed, the provider may not be able to provide any specific treatment details at this point, as he or she does not know how the virus has affected your body. Still, the provider should lay out the general approach that will be taken to control your HIV disease and to prevent opportunistic infections. You should feel free to ask questions and, if possible, to get written materials you can take home to read. If you already have strong feeling or beliefs about certain treatment options, you should specifically discuss these with your provider.
During this visit you should feel free to ask the provider any questions you may have about his or her medical background, and if these questions are met with hostility, you should be wary of this doctor. Your relationship with your healthcare provider must be based on trust. You will need to develop a rapport with your provider that allows you to feel confident about his or her medical advice, and feel confident making the important decisions about your own care.
Discussing disclosure
The provider may also take this opportunity to discuss disclosure issues (e.g., telling family members, telling others who might be at risk) and the need for you to seek additional help regarding depression, substance abuse, or other issues which may affect your health and healthcare. Again, this is a chance for you to share, with complete confidentiality, the concerns you have and problems you are experiencing. To have a trusting and supportive relationship with your provider is essential to maintaining your good health and you should take advantage of this rare opportunity to get things off your chest and get the help you need.
Choosing a healthcare provider to help you treat your HIV disease can be an overwhelming decision. However, it is also a very important one. Take the time to research and find the right provider and support staff for you. It will help you as you learn to manage your HIV disease and keep you healthy.
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