WHAT IS KS? HOW IS KS TREATED? CAN KS BE PREVENTED? WHAT ELSE IS BEING STUDIED FOR KS? THE BOTTOM LINE WHAT IS KS? Kaposi’s sarcoma (KS) is a cancer-like disease. It originally was known as a disease affecting elderly men of Eastern European or Mediterranean background. KS also occurs in African men and people with a weakened immune system. The most common cause of KS now is HIV infection. KS usually shows up in the skin, or in the linings of the mouth, nose, or eye. KS can also spread to the lungs, liver, stomach and intestines, and lymph nodes. KS involves the development of many new, tiny blood vessels. This process is called angiogenesis. KS is caused by a herpes virus called Human Herpes Virus 8 (HHV-8). In a recent study, men with HHV-8 were nearly 12 times more likely to be diagnosed with KS than men who did not have HHV-8. KS affects about 20% of people with AIDS who aren’t taking anti-HIV drugs. The rate of KS has dropped by oer 80% since the introduction of strong antiretroviral therapy (ART). KS is mostly a disease of men: there are at least 8 men with KS for each woman. It is one of the most visible signs of AIDS, because it usually shows up as spots on the skin (lesions) that look red or purple on white skin, and bluish, brownish or black on dark skin. Lesions often occur on the face, arms and legs. KS on the skin is not life threatening. However, KS lesions on the feet and legs can make it difficult to walk. If KS spreads to other parts of the body, it can cause serious problems. In the mouth lining, it can cause trouble eating and swallowing. In the stomach or gut, it can cause internal bleeding and blockages. If KS blocks lymph nodes, it can cause severe swelling of the arms, legs, face, or scrotum. The most serious form of KS is in the lungs, where it can cause a serious cough, shortness of breath, or an accumulation of fluid that can be fatal. KS can often be diagnosed by looking at the skin lesions. They are usually flat, painless, and do not itch or drain. They can look like a bruise, but a bruise will lose its purple color if you push on it; a KS lesion won’t. KS lesions can grow into raised bumps or patches and grow together. Your health care provider might take a small sample (a biopsy) from skin spots to examine under a microscope and confirm a diagnosis of KS. HOW IS KS TREATED? Strong ART is the best treatment for active KS. In many people, ART can stop the growth or even clear up skin lesions. In addition to ART, there are different treatments for KS in the skin or in other parts of the body. In the skin, KS may not have to be treated if there are only a few lesions. Skin lesions can be: Frozen with liquid nitrogen, Treated with radiation, Cut out surgically, Injected with anti-cancer drugs or interferon alpha. Treated with Panretin gel (retinoic acid) These treatments only deal with the skin lesions, not with KS overall. Skin lesions may come back after treatment. If KS has spread into internal organs, into internal organs, systemic (whole-body) drug treatment is used. If ART is not enough, the drugs doxorubicin (Doxil®,) daunorubicin (DaunoXome®) or paclitaxel (Taxol®) may be added. Doxil and DaunoXome are anti-cancer drugs in "liposomal" form. "Liposomal" means that tiny amounts of drug are encased in small fat bubbles (liposomes). The drugs last longer in this form and seem to move to the areas where they’re needed. Some side effects are reduced with liposomal forms of drugs. CAN KS BE PREVENTED? It is not clear how HHV-8 spreads. It might be spread through sexual activity and deep kissing. As with other opportunistic infections, a healthy immune system can control HHV-8 infection. The best way to prevent KS is by using strong anti-HIV medications to keep your immune system strong. WHAT ELSE IS BEING STUDIED FOR KS? Anti-cytokine approaches: There is a lot of research on cytokines, proteins that the immune system uses to sti mulate cells to grow. Researchers think that substances that can inhibit these (and similar) growth factors can also slow down the growth of KS. Monoclonal antibodies: These drugs are produced through genetic engineering. Their names end in "-mab," such as bevacizumab. Other drugs: Scientists are studying several drugs that slow down the development of new blood vessels (angiogenesis.) THE BOTTOM LINE KS is a disease that affects up to 20% of people with AIDS who are not taking ART. It is partly caused by a herpes virus called HHV-8. The best treatment for KS is strong antiretroviral therapy (ART.) KS in the skin can be treated in several ways and is not a serious problem. KS in internal organs can be life threatening. Internal KS is usually treated with anti-cancer drugs. If you notice new dark spots on your skin, have your health care provider look at them to see if you might have KS. source: The AIDS Infonet

ACT UP Golden Gate, one of the leading ACT UP chapters in the nation, has changed its name to Survive AIDS, to avoid public confusion with an unrelated group using the name ACT UP San Francisco. The decision followed more than two years of discussion. The new organization will continue "to identify and help solve problems for people with HIV and AIDS in order that they might survive long-term" (from the group’s statement to the community explaining the name change). Jeff Getty of ACT UP Golden Gate told San Francisco Frontiers (April 6, 2000), "The name ACT UP has been destroyed in this town…we will continue along the old lines…but we will have one new focus: a national teleconferencing system with an 800 number so that cities with only one sharp activist can connect to the rest of us." ACT UP San Francisco–which tells people not to be tested or treated for HIV infection, and which opposes AIDS clinical trials ("AIDS research isn’t medicine — it’s murder")–has disrupted treatment meetings in San Francisco for years; activists and medical professionals alike have been concerned for their personal safety. (For a report on this week’s disruption, see "More Violence from ACT UP/SF: Woman Injured at HIV Treatment Forum," in the Bay Area Reporter, April 20, 2000, page 1.) Elsewhere, ACT UP San Francisco’s best known action was to invade a medical meeting at the World AIDS Conference in Vancouver, Canada, in July 1996, and throw red liquid on the speakers, in front of an audience of more than a thousand physicians and researchers. ACT UP San Francisco is also expected to have a high profile at the World AIDS Conference in Durban, South Africa, July 9-14, 2000; it has already won sympathy in South Africa when the conference organizers canceled its booth A1A (apparently it had reserved one of the most prominent exhibit booths in the conference facility, although some legitimate activist organizations were turned down for booths), after learning about the nature of the organization. Comment This writer has worked with ACT UP Golden Gate for years, and has been amazed at what the organization has been able to accomplish. Human growth hormone, for example, was stuck in unworkable clinical trials when Bill Thorne (who died last year of liver cancer) started an ongoing ACT UP Golden Gate project which accelerated the research, approval, and availability of this treatment for AIDS-related wasting by as much as several years, saving the lives of many people who would otherwise have died from the condition. The ACT UP Golden Gate / Survive AIDS letter to the community lists other accomplishments: Negotiated price reductions from pharmaceutical companies for a number of AIDS-related drugs. Forced pharmaceutical companies to provide new AIDS drugs on a compassionate basis to people who did not qualify for drug trials but had run out of other treatment options. Participated in local and national community advisory boards to ensure drug trials were conducted in ways that benefited participants, and were not wasteful. Worked with other organizations in San Francisco to force AIDS non-profits to be more accountable to the citizens of San Francisco. Forced Kaiser Permanente to accept HIV disease as a specialty, which requires unique diagnostic viral load tests, and initiated an HIV patient-advisory board. Worked with city housing groups to halt owner move-in evictions of the elderly, disabled, and people with AIDS. Worked with other AIDS organizations to get the government and pharmaceutical companies to study the side effects of current AIDS treatments. Obtained one million dollars in state funds for the University of California San Francisco to study organ transplantation in HIV+ people. Prior to this, the surgeons at UCSF routinely denied life-saving transplant procedures to anyone who was HIV+. Wrote a regular column for the Bay Area Reporter to keep the community informed about current issues regarding HIV/AIDS. But ACT UP/Golden Gate has not always succeeded in informing the public about what it has accomplished. (One example: When we checked our email to find the ACT UP Golden Gate letter to the community which contains the accomplishments quoted above, the only copy we found had been distributed by ACT UP San Francisco, under the introductory message, "After ten years of pushing poisons onto gay men, ACT UP Golden Gate is DEAD! Long live ACT UP SF! AIDS is over!") Part of the continuing public confusion of the organizations may stem from the fact that ACT UP San Francisco has a budget about 20 times larger than that of ACT UP Golden Gate–about $1,666,000 in its last fiscal year, mostly from sale of medical marijuana, vs. $83,000 for ACT UP Golden Gate, according to a widely-quoted article in the Bay Area Reporter, a San Francisco gay newspaper, on March 23. For example, on the night before the first Survive AIDS meeting, dozens of 4 1/4 by 5 1/2 inch flyers reading "www.surviveaids.com" were pasted onto news racks, advertising signs, windows, light poles, and parking meters in San Francisco’s Castro district; shortly after midnight, this writer counted 70 of them pasted in a single block. There were six different headlines (THE AIDS LIE IS ANTI-GAY!, BAN THE HIV TEST!, AIDS RESEARCH KILLS QUEERS!, HIV IS HOMOPHOBIA!, TUNE OUT TERROR!, and FLUSH YOUR AIDS DRUGS!); each flyers contained only a headline and the Web address. Survive AIDS had registered www surviveaids.org–but others had registered wwwsurviveaidscom and wwwsurviveaidsnet, which pointed to a page on the ACT UP San Francisco Web site. Survive AIDS did not have the resources to routinely register all three, while ACT UP San Francisco could afford to register and publicize names other than its own. This writer did not support the name change, fearing worldwide consequences if the name ACT UP is abandoned, since it is the best-known AIDS activist name in the world; it could then be used more freely to deliver a very different message. But in San Francisco the change had to be made, because the people doing the work want to help themselves

The most recent presentation on the origin of HIV was presented at the 6th Conference on Retroviruses and Opportunitistic Infections (Chicago, January 1999). At that conference, research was presented that suggested that HIV had “crossed over” into the human population from a particular species of chimpanzee, probably through blood contact that occurred during hunting and field dressing of the animals. The CDC states that the findings presented at this conference provide the strongest evidence to date that HIV-1 originated in non-human primates. The research findings were featured in the February 4,1999 issue of the journal, Nature. We know that the virus has existed in the United States, Haiti and Africa since at least 1977-1978. In 1979, rare types of pneumonia, cancer and other illnesses were being reported by doctors in Los Angeles and New York. The common thread was that these conditions were not usually found in persons with healthy immune systems. In 1982 the Centers for Disease Control and Prevention (CDC) officially named the condition AIDS (Acquired Immune Deficiency Syndrome). In 1984 the virus responsible for weakening the immune system was identified as HIV (Human Immunodeficiency Virus).

WHAT ARE VACCINATIONS? WHAT’S DIFFERENT FOR PEOPLE WITH HIV? WHICH VACCINATIONS ARE RECOMMENDED? HIV-POSITIVE TRAVELLERS WHAT ARE VACCINATIONS? Vaccinations, or immunizations, are treatments that build up your body’s defenses against certain infections. For example, many people get flu shots each fall. It can take a few weeks for your immune system to respond after a vaccination. Most vaccines are used to prevent infections. However, others help your body fight an infection that you already have. These are called ?therapeutic vaccines.? See fact sheet 480 for more information on therapeutic vaccines and HIV. "Live" vaccines use a weakened form of the germ. They can give you a mild case of disease, but then your immune system kicks in to protect you against a severe case. Other "inactivated" vaccines don’t use a living germ. You don’t get the disease, but your body can still build up its defenses. Vaccines can have side effects. With live vaccines, you might get a mild case of the disease. With inactivated vaccines, you could have pain, redness, and swelling where you got the shot. You might also briefly feel weakness, fatigue, or nausea. WHAT’S DIFFERENT FOR PEOPLE WITH HIV? If HIV has damaged the immune system, it might not respond as well to a vaccine, or for the same length of time. Also, vaccines might cause more side effects in people with HIV. They might even cause the disease they are designed to prevent. There has not been much research on vaccines and people with HIV, especially since people started using combinations of antiretroviral drugs (ARVs). However, there are a few key guidelines for people with HIV: Vaccinations can increase the viral load (see fact sheet 125) for a little while. On the other hand, getting sick with the flu, hepatitis, or other preventable diseases would be much worse. Do not measure your viral load within 4 weeks of any vaccination. Flu shots have been studied more than any other vaccination for people with HIV. They are considered to be safe and effective. However, people with HIV should not use "FluMist" nose spray flu vaccine because it contains live virus. If your CD4 cell count (see fact sheet 124) is very low, vaccines might not work. If possible, strengthen your immune system by taking strong ARVs before vaccination. HIV-positive people should not receive most live vaccines (see below)including chickenpox (varicella) or smallpox vaccine. Do not get these vaccines unless your health care provider agrees that it is safe for you. Avoid close contact with anyone who got a "live" vaccination in the past 2 or 3 weeks. Still, the "MMR" vaccine against measles, mumps and rubella is considered safe if your CD4 cell count is over 200. WHICH VACCINATIONS ARE RECOMMENDED? 1. Pneumonia: Having HIV greatly increases your risk of developing pneumococcal pneumonia. The vaccine takes 2 or 3 weeks to become effective. The protection lasts for about 5 years in people with HIV. 2. Hepatitis (See fact sheet 506): Hepatitis can be caused by several different viruses. Vaccines exist for hepatitis A and B. Hepatitis A is usually not serious but it can be for someone with a weakened liver. This includes people who are infected with hepatitis B or C. Two hepatitis A vaccine shots can protect you for about 20 years. Hepatitis B can cause serious disease. If you were exposed to hepatitis B, you should have antibodies. If you don’t, you should get vaccinated. A series of three hepatitis B shots should protect you for about 10 years. People who have a higher risk of hepatitis A or B include men who have sex with men and people who use street drugs or who inject drugs. 3. Influenza (Flu): A flu vaccine is offered each year, based on the most active type of flu. Flu shots are recommended for all people with HIV. For best protection, you should get the shot by mid-November, before flu season. A case of the flu can sometimes develop into pneumonia. Some flu vaccines can cause an allergic reaction in people who are allergic to eggs. A new form of flu vaccine called "FluMist" was recently approved. This is a "live attenuated" vaccine. It has not been studied in people with weakened immune systems. FluMist nasal spray should not be used by people with HIV. 4. Tetanus and Diphtheria: Tetanus is a serious disease caused by common bacteria. Tetanus infection can occur in any cut in the skin. It cannot be passed from person to person. Injecting drug users have a higher risk of a tetanus infection. Diphtheria is another bacterial disease. It can be passed from person to person and is common in homeless people. Diphtheria and tetanus vaccines are always combined. Tetanus and diphtheria vaccines are usually given to children as a series of three shots. A single booster shot can be given every ten years. People with HIV should not receive the shots more than once every 10 years, or after 5 years if injured. Getting this shot more often might cause a painful local reaction. The shots can cause a lump that can last for a few weeks. 5. Measles, Mumps and Rubella: These are three diseases caused by viruses. They are very contagious and can be spread by coughing or sneezing. Children are normally vaccinated against these diseases with an "MMR" shot. The vaccine usually gives life-long protection against these diseases. If you were born after 1957 and did not get these vaccines as a child, you should get an MMR vaccination. However, since this is a live vaccine, it is not recommended for people with a CD4 cell count below 200. 6. Meningitis (meningococcal meningitis): In the past few years there have been several outbreaks of meningitis. Most have been on college campuses. People with weakened immune systems have a greater risk of developing meningitis if they are exposed. HIV-POSITIVE TRAVELERS Every traveler with HIV should be sure they are vaccinated against hepatitis A and B. Countries have different vaccination

WHAT IS HIV/AIDS FRAUD? HIV fraud is the promotion, advertisement, or sale of products that are supposed to diagnose, treat, or cure HIV when those products have not been proven to be safe and effective for those purposes. Regular medicine does not have a cure for HIV. Because it is a serious illness, many people with HIV disease are willing to try almost anything to get healthy. Some unproven treatments may be harmless, but others can be dangerous. For example, one brand of "Brain Wave Synchronizer" caused epileptic seizures. Be careful when you choose treatments for HIV disease. This fact sheet will help you evaluate treatments and be sure that you’re not dealing with an HIV fraud. WARNING SIGNS OF AN HIV FRAUD If you notice any of these warning signs when you consider an HIV therapy, be very careful! The treatment might still be a good one, but you should ask extra questions about it. If it sounds too good to be true, it probably is. The product prevents or cures HIV or AIDS. Researchers have been working hard for over 10 years, but there is not yet any known cure for HIV or AIDS. The only sure way to prevent AIDS is to avoid being infected with the HIV virus. The product is a quick cure for a wide range of ailments. Most products are effective only against a specific illness or a few closely related medical problems. Personal success stories are the only evidence that the treatment works. Of course, if a treatment works, you can find people who will tell you about it. But testimonials don’t prove that the treatment worked. Look for results of research studies or other evidence. Be suspicious if the promoters use key words like miraculous cure, amazing breakthrough, foolproof, suppressed treatments, or secret ingredients. These words are often used to make you think that a treatment is valuable even though there may be no proof that it works. The treatment was discovered and tested in another country, or is only available outside the US. Certainly, valuable treatments are developed and tested in other countries. However, many other countries permit health claims without the kinds of proof required in the United States. The treatment is only available privately, for a short time, or from only one source; or if it requires payment in advance. If a product really works, why isn’t it advertised and available publicly? This may be a way to get around government regulations. You can only get the treatment by paying to take part in testing an experimental treatment. When most experimental treatments are tested, people receive them free of charge. COMMON SENSE ABOUT UNPROVEN TREATMENTS You might end up spending a lot of money on treatments that don’t work. If you believe they are helping you, and you can afford to pay for them, they might be all right. But remember: Some unproven treatments might be harmful to your health. Health insurance will not pay for them. Using unproven treatments could make you delay using other treatments that really work, giving your illness time to get worse. QUESTIONS YOU SHOULD ASK You should be careful about any HIV treatment, and especially if you see any of the warning signs of fraud. It can be difficult to know what’s true and what’s not, because many legitimate HIV treatments are very expensive and difficult to understand. Here are some questions to ask about HIV treatments: Can you give me some written information about the product? Did the Food and Drug Administration approve this product or treatment? If not, why not? Which company manufactures this product? How can I contact them? What uses has the product been tested for? Where can I see the test results? What are the side effects, or other risks, of using this product or treatment? Whom can my health care provider call for more information? TAKE YOUR TIME; CHECK IT OUT Legitimate health care providers should not be opposed if you want to get more information about a new treatment or product. If you ever feel pressured to make a decision about an HIV therapy before you feel ready, don’t do it! Take your time to get more information from sources that you trust, such as: Your case manager Your HIV health care provider An HIV/AIDS service agency CDC Health Information at 1-800-342-2437, or e-mail cdcinfo@cdc.gov The National AIDS Treatment Information Service at 1-800-448-0440 Project Inform, a community organization with the National HIV/AIDS Treatment Infoline at 1-800-822-7422 THE BOTTOM LINE HIV disease is very complicated. No cure has been developed yet. There are many different treatments and products that claim to help people with HIV disease. Some of these have not been carefully tested, and some might even be harmful. Take your time to evaluate any product or treatment, especially if you see any of the warning signs of an HIV fraud. This Fact Sheet is sponsored by the US Food and Drug Administration.

WHAT IS AN AIDS CLINICAL TRIAL? WHO CAN PARTICIPATE IN A CLINICAL TRIAL? WHAT ARE THE BENEFITS OF PARTICIPATING? WHAT ARE THE RISKS? HOW ARE PARTICIPANTS PROTECTED? SHOULD I PARTICIPATE? TO FIND OUT MORE ABOUT CLINICAL TRIALS: WHAT IS AN AIDS CLINICAL TRIAL? Before new drugs can be sold to treat HIV disease, they must be proved to be safe and effective. The Food and Drug Administration (FDA) approves new drugs and other treatments based on the results of laboratory tests, animal tests, and tests in humans (clinical trials). New treatments are tested in humans only if there were good results from laboratory tests and animal studies. In the first clinical trials, the treatment is tested for safety in a small group of people. Later trials with many more participants test how well the treatment works. InfoNet Fact Sheet 105, How Drugs are Approved, has more information on the phases of clinical trials. A clinical trial is a carefully planned medical experiment. The guidelines for a clinical trial are called a protocol. The protocol is a document that describes exactly how the trial will be carried out. WHO CAN PARTICIPATE IN A CLINICAL TRIAL? The protocol explains the rules for participation in a clinical trial. Each trial is different. For example, some trials require certain viral loads or CD4 cell counts. You normally cannot participate in a clinical trial if you have any opportunistic infections, or are using any treatments that might make it difficult to measure how well the test treatment is working. You also cannot participate if the study treatment might harm you. For example, women sometimes cannot participate in trials during the first three months of pregnancy, because of the risk of birth defects for their newborn child. Trials are carried out at different hospitals and clinics throughout the world. Some hospitals participate in many clinical trials. Others may not offer any. Some trials will reimburse your travel costs to a study center. WHAT ARE THE BENEFITS OF PARTICIPATING? You could get a new treatment before it is available by prescription. Your health will be watched very carefully. You might get some or all of your medications paid for. You might also get some lab tests or other care for free. You will be helping others by contributing information about new treatments. WHAT ARE THE RISKS? In trials, new treatments are compared to the best available medication or to a dummy medication (a "placebo"). You might not get the new treatment. Patients and health care providers in these trials are not told who is getting the new treatment. You might have to stop taking other medications during the trial. Study treatments might not work. Study treatments might have serious side effects. Participating in a study might take a lot of time. It could require special record-keeping or many trips to the study location. HOW ARE PARTICIPANTS PROTECTED? There are strict laws on research using human participants. The main tool to protect you is called "Informed Consent." You will be given a full, written description of the clinical trial to read and sign before you agree to participate. Take your time to review the Informed Consent before you sign it. If you need an interpreter to help you understand it, ask for one. If you have questions, be sure you get the answers before you sign. There there are also local and national boards that review and monitor each clinical trial before it starts and while it is in progress. Trials can be stopped early if they are harming participants. You can decide to drop out of a clinical trial at any time, for any reason. SHOULD I PARTICIPATE? You and your health care provider should discuss the possible benefits and risks of taking part in a clinical trial. Here are some of the questions you should consider: What is the purpose of the study? How long will it last? Where is it being conducted? How will I take the medication (pills, shots, intravenous infusion, other)? What else do I have to do (records to keep, office visits, etc.)? What will I have to pay for? Can I be reimbursed for travel expenses? Is child care available? Will I be able to stay on the study treatment after the trial is over? Who will pay for it? What was learned in previous studies of this treatment? Will I have to stop any drugs or other treatments I am now using? Will taking part in this study exclude me from other clinical trials? TO FIND OUT MORE ABOUT CLINICAL TRIALS: For information about participating in clinical trials or trials availability throughout the US, call the AIDSinfo Service at 1-800-448-0440, or visit their Internet web site at https://aidsinfo.nih.gov The FDA website has information on the drug development process at https://www.fda.gov/cder/handbook/dev_rev.htm This Fact Sheet is sponsored by the US Food and Drug Administration (FDA).

WHAT ARE THE ISSUES? GENERAL GUIDELINES SPECIAL SITUATIONS GETTING HELP WHAT ARE THE ISSUES? When you test positive for HIV, it can be difficult to know who to tell about it, and how to tell them. Telling others can be good because: You can get love and support to help you deal with your health. You can keep your close friends and loved ones informed about issues that are important to you. You don’t have to hide your HIV status. You can get the most appropriate health care. You can reduce the chances of transmitting the disease to others. In many states, you can be found guilty of a felony for not telling a sexual partner you are HIV-positive before having intimate contact. Telling others may be bad because: Others may find it hard to accept your health status. Some people might discriminate against you because of your HIV. You may be rejected in social or dating situations. You don’t have to tell everybody. Take your time to decide who to tell and how you will approach them. Be sure you’re ready. Remember, once you tell someone, they won’t forget you are HIV-positive. GENERAL GUIDELINES Here are some things to think about when you’re considering telling someone that you’re HIV-positive: Know why you want to tell them. What do you want from them? Anticipate their reaction. What’s the best you can hope for? The worst you might have to deal with? Prepare by informing yourself about HIV disease. You may want to leave articles or a hotline phone number for the person you tell. Get support. Talk it over with someone you trust, and come up with a plan. Accept the reaction. You can’t control how others will deal with your news. SPECIAL SITUATIONS People You May Have Exposed to HIV: It can be very difficult to disclose your status to sexual partners or people you shared needles with. However, it is very important that they know so they can decide to get tested and, if they test positive, get the health care they need. The Department of Health can tell people you might have exposed, without using your name. Employers: You may want to tell your employer if your HIV illness or treatments interfere with your job performance. Get a letter from your doctor that explains what you need to do for your health (taking medications, rest periods, etc.). Talk with your boss or personnel director. Tell them you want to continue working, and what changes may be needed in your schedule or workload. Make sure they understand if you want to keep your HIV status confidential. People with disabilities are protected from job discrimination under the Americans with Disabilities Act (ADA). As long as you can do the essential functions of your job, your employer can not legally discriminate against you because of your HIV status. When you apply for a new job, employers are not allowed to ask about your health or any disabilities. They can only legally ask if you have any condition that would interfere with essential job functions. Family Members: It can be difficult to decide whether to tell your parents, children, or other relatives that you are HIV-positive. Many people fear that their relatives will be hurt or angry. Others feel that not telling relatives will weaken their relationships and may keep them from getting the emotional support and love that they want. It can be very stressful to keep an important secret from people you are close to. Family members may want to know how you were exposed to HIV. Decide if or how you will answer questions about how you got infected. Your relatives may appreciate knowing that you are getting good health care, that you are taking care of yourself, and about your support network. Health Care Providers: It’s your decision whether or not to tell a health care provider that you have HIV. If your providers, including dentists, know you have HIV, they should be able to give you more appropriate health care. All providers should protect themselves from diseases carried in patients’ blood. If providers are likely to come in contact with your blood, you can remind them to put gloves on. Social Contacts: Dating can be very threatening for people with HIV. Fear of rejection keeps many people from talking about their HIV status. Remember, every situation is different and you don’t have to tell everybody. If you aren’t going to be in a situation where HIV could be transmitted, there’s no need to tell. Sooner or later in a relationship, it will be important to talk about your HIV status. The longer you wait, the more difficult it gets. An HIV-Positive Child’s School: It is best to have good communication about your child’s HIV status. Meet with the principal and discuss the school’s policy and attitude on HIV. Meet with the nurse and your child’s teacher. Be sure to talk about your child’s legal right to confidentiality. GETTING HELP You can get help with telling others about your HIV status from the counselors at the HIV anonymous test sites, or your HIV case manager. This Fact Sheet is sponsored by the US Food and Drug Administration (FDA).

GETTING THE MOST FROM OFFICE VISITS CHOOSE THE RIGHT PROVIDER! PREPARE AHEAD OF TIME KEEP TRACK OF THE TIME DON’T BE A HERO GET YOUR QUESTIONS ANSWERED TAKE THE ANSWERS WITH YOU GETTING THE MOST FROM OFFICE VISITS Health care office visits are usually very short. Many times, patients leave the office feeling they haven’t been listened to. They may have more questions than when they arrived. This fact sheet talks about ways to prepare for your next office visit. It also offers advice on how to get the most from your health care provider. Many people get their care from a physician’s assistant or a nurse practitioner. When this fact sheet talks about your "doctor" it means any of these health care professionals. CHOOSE THE RIGHT PROVIDER! If you and your provider don’t have the same approach to your health care, it will be difficult to be satisfied with your appointments. Fact Sheet 202 has more information on choosing a health care provider. PREPARE AHEAD OF TIME What’s been going on since your last appointment? Write a list to use during your appointment. Be sure to include: New health problems or symptoms, related to HIV or not. How long have they been going on? How serious are they? Don’t ignore feeling tired, not sleeping well, trouble concentrating, stomach problems or emotional issues like anxiety. New or increasing side effects or reactions to your medications. Again, for how long? How serious are they? How well you’ve been taking your medications. Have you missed doses? If so, why? Supplements or alternative therapies the doctor doesn’t already know about Major changes in your living situation, including employment, relationships, non-HIV health issues, and so on. You may not have time to discuss all of these, so focus on the most important items. You can leave a note with the doctor to let them know about the items you didn’t get to discuss. Bring information with you to help your doctor. This might include pill bottles for all of the medications and supplements you’re taking, or lab reports or test results from other health care providers. KEEP TRACK OF THE TIME Be sure you show up for your appointments! That’s the only way your doctor can make sure you’re getting the best treatment to maintain your health. If you arrive late for your appointment, you can throw off the office schedule for the rest of the day. If you skip an appointment, you’re wasting time for the doctor, the office staff, and other patients. On the other hand, it can be very frustrating to get to your appointment on time and have to wait. Usually this means that a serious health problem came up for another patient earlier in the day. If you’re ever the one with that problem, you’ll appreciate the doctor spending more time with you. It can be a good idea to call the doctor’s office before you leave home to see if appointments are running on time, or are delayed. DON’T BE A HERO If you’re having a hard time taking your medications correctly, tell your doctor! Maybe a side effect that didn’t use to bother you is getting impossible to deal with. Maybe you’d do better with a simpler medication schedule. Your health care providers can’t help you unless they know about these issues. Don’t worry about not being a good patient or upsetting your doctor. They want the best for your health! GET YOUR QUESTIONS ANSWERED When you walk in to your appointment, you should know the most important questions that you want answered before you leave. It’s a good idea to write these down. This will help you organize your thoughts and make it easier to know if you’re missing something. Take your list into your appointment. Tell the doctor about your questions. If the appointment is ending and you don’t have your answers, ask for them! Doctors have to manage their time, but you also have to manage your appointment time. You might only have fifteen minutes every few months, so make the most of it! Medications: If a new drug gets prescribed, make sure you leave with information on exactly how to take it. What’s the dosage? How often? Does it matter if you take it with food, or on an empty stomach? Does it have to be kept in the refrigerator? Know what side effects to expect. Are there things you can do at home to deal with them? When should you call the office if the side effects are too severe or go on for too long? Tests: If your doctor wants you to have some medical tests, be sure you understand what the test results are supposed to show and what your doctor will do with them. When you discuss the test results, ask again if you’re not sure what the test is for and what the results mean. Don’t be embarrassed if you don’t understand the answers to your questions. Tell the doctor that you don’t understand. It’s not rude to insist on getting your questions answered. That’s the only way to be a better partner in your own health! TAKE THE ANSWERS WITH YOU There’s usually a lot of information going quickly back and forth during a health care appointment. Be sure to take that information home with you! Some of these tips might work for you: Take notes during the appointment. Ask for written material about medications, side effects, and illnesses. See if there’s anyone in the office you can talk to, like a nurse or a counselor, to go over what happened in your appointment. Bring a friend with you to the appointment. Let them know what you want to get out of the office visit. You could give them a copy of your questions, so they can make sure they all get answered. They can also pay attention to what the doctor says. That way you can sit down together after the appointment and be sure

WHY IS CHOOSING AN HIV CARE PROVIDER IMPORTANT? TRAINING AND EXPERIENCE DO YOU HAVE SIMILAR IDEAS ABOUT TREATING HIV? THE PROVIDER-PATIENT RELATIONSHIP HELP YOUR PROVIDER HELP YOU AVAILABILITY CONFIDENTIALITY CHANGING PROVIDERS TO FIND A HEALTH CARE PROVIDER THE BOTTOM LINE WHY IS CHOOSING AN HIV CARE PROVIDER IMPORTANT? Treating HIV disease is very complicated. There are choices to consider at every stage of the disease. It’s best if you and your health care provider work together as a team. That makes it easier to choose and stick to your treatment plan. "Care provider" means a doctor, a physician’s assistant, or a nurse practitioner. There are several issues you may want to consider in choosing an HIV care provider. You might decide to have them be your "regular doctor" for all of your health issues. You might use a different care provider for most health issues and use your HIV provider as a specialist. If your regular provider isn’t an HIV specialist, be sure they regularly get expert advice on HIV issues. TRAINING AND EXPERIENCE Many people with HIV/AIDS get their care from physicians who are specialists in infectious diseases. However, especially now that people are living longer with HIV, it’s important to deal with all of your health issues. You might prefer to have a family practitioner or a specialist in internal medicine as your primary physician. No matter what their specialty, you will get better HIV care from providers who have experience treating people at all stages of HIV disease. Be sure to ask how many patients with HIV they have treated, and how many they currently see. HIV patients do better when their physicians have more experience treating HIV disease. DO YOU HAVE SIMILAR IDEAS ABOUT TREATING HIV? Some providers are conservative. They prefer "tried and true" methods. Others are more aggressive. They are willing to try new and experimental treatments. Some are optimistic by nature, and focus on the hopeful or positive side when they talk about test results or future prospects. Others are more realistic. Some are pessimistic. Some providers are comfortable suggesting "complementary and alternative" therapies such as massage, acupuncture, or herbs. Others stick strictly to western medicine. If you want a lot of emotional support, you probably won’t be comfortable with a health care provider who only talks about test results. The more comfortable you are with their approach to HIV treatments, the easier it will be for you to get the kind of health care you want. Talk to providers and their patients before you make your choice. THE PROVIDER – PATIENT RELATIONSHIP Many patients do better when they take an active role in planning their own health care. These patients do a lot of reading on their own, and bring information to their providers. They work together to make health care decisions. Other patients are more comfortable with the provider making important decisions. Decide how you want to work with your provider. See if that fits with the way the provider likes to work with patients. HELP YOUR PROVIDER HELP YOU Make sure that your provider has all the information needed to give the best advice about your treatment. This starts with your medical records, which may have to be transferred from another office. When you start working with a new provider, they will probably do a lot of tests to collect "baseline" information. This helps you see how well you’re doing as time goes by. Be sure your provider knows how you feel about using medications, and about your illness. Some people don’t mind taking a lot of pills. Other people would rather take as few as possible. Your provider should also know about other treatments you are using or want to try, including non-medical ones. Be honest about your lifestyle. Your eating, sleeping, and work patterns can make a difference for your health care. So can your sexual practices and use of recreational drugs. If your provider seems too judgmental, try to change providers. It’s better to have provider who really knows you instead of holding back information. Let your provider know about the important people in your life: the people who will support you if you get sick, or will help you make important medical decisions. AVAILABILITY The best care provider won’t do you any good if you can’t get in to see them. Ask them (or their receptionist) how long it usually takes to get an appointment. Find out how well they usually stay on schedule during the day. The type of insurance you have could limit your choice of a provider. Maybe the provider isn’t on the list for your health maintenance organization (HMO) or insurance plan. Be sure to find out how you will be able to pay for their services. Remember, you don’t need an HIV specialist to help you with most of your health care needs. If a good HIV provider is hard to find, or if it’s hard to get an appointment, use a non-HIV care provider for your general health care. Just be sure that when you are dealing with HIV issues, you see an experienced HIV provider, or one who consults with an expert in HIV. CONFIDENTIALITY Some people are very concerned about keeping their HIV status private. You might choose to get your HIV care from a provider in another town to protect your privacy. You will need to find your own balance between confidentiality and convenience. CHANGING PROVIDERS Your health care needs might change as time goes by. Also, your ideas about treatment could change. Although you will probably get better medical care from a provider who has known you for a long time, you always have the right to stop seeing one provider and change to another. TO FIND A HEALTH CARE PROVIDER You can get help finding a care provider from your case manager or from your local Department of Health. You can also ask other people living with HIV. The American Academy of HIV Medicine

DID YOU JUST LEARN THAT YOU’RE HIV-POSITIVE? LEARN MORE ABOUT HIV KEEP TRACK OF YOUR IMMUNE SYSTEM DECIDE HOW YOU WANT TO DEAL WITH HIV GETTING HELP THE BOTTOM LINE FOR MORE INFORMATION DID YOU JUST LEARN THAT YOU’RE HIV-POSITIVE? It can be very scary to learn that your HIV blood test came back positive, but it’s not a death sentence. The test means that you are infected with the virus that causes AIDS, the human immunodeficiency virus (HIV). Even though there is no cure for HIV disease, there are many new treatments that help keep the disease under control. Many people with HIV infection live a long and healthy life. No one can predict how long it may take to develop any symptoms of HIV disease. When you first find out that you have HIV, you’ll need to adjust to this change in your life. Family members or friends might be able to help you, or you could talk with a counselor or social worker. Take your time and don’t feel that you have to tell everyone right away about your HIV status. Then start taking the next steps: Learn more about HIV disease Keep track of your immune system Decide how you want to deal with HIV LEARN MORE ABOUT HIV HIV is a virus that can multiply rapidly in your body. Without treatment, HIV can make your immune system very weak. If this happens, you might get an "opportunistic infection". Common germs cause these diseases. People with healthy immune systems can be exposed to these germs and not get sick. The same germs can cause serious illnesses in people with weak immune systems. The first medication for HIV was approved in 1987. Now there are many different drugs that can be used to slow down the HIV virus. Most people with HIV disease can now expect to live healthy lives for many years. You will probably have a lot of questions about HIV disease. There are many good sources of information, including: your HIV case manager or health care provider; the AIDS InfoNet (see the information at the bottom of this page); your local public health department. Be careful about the information you’re getting – check it out with your health care provider or other sources to make sure it’s accurate. KEEP TRACK OF YOUR IMMUNE SYSTEM In addition to your regular medical exams, there are two special blood tests to keep track of HIV disease. They are the viral load test and the CD4 cell test. The viral load test helps show how strong the HIV virus is in your body. It measures the amount of HIV in your blood. Lower levels are better. This test is used to help decide when it’s time to start using antiretroviral medications (ARVs), to see if the drugs are working, and to know when to change medications. The CD4 cell test helps show how strong your immune system is. It counts how many infection-fighting white blood cells you have. These cells are also called T-4, T-cell or T-helper cells. The more, the better. If your CD4 cell count gets too low, you might develop an opportunistic infection. This test is used to help decide when it’s time to start using ARVs, or medicines to prevent opportunistic infections. Your health care provider will probably want to do these tests every three to six months. If your viral load stays low and your CD4 cell count stays high, you might choose to delay treatment. DECIDE HOW YOU WANT TO DEAL WITH HIV HIV may not be the only health issue you are dealing with. The better your health is overall, the better you can deal with HIV. Be sure to get regular medical and dental checkups, and get treatment for conditions like diabetes, high blood pressure, or high cholesterol. If you can avoid smoking, drinking too much alcohol, recreational drug use, and sexually transmitted diseases, you will probably find your HIV easier to control. USING DRUGS TO FIGHT HIV Although there are many different medications that can help slow down the HIV virus, we still don’t know exactly when or how best to use them. You will need to get information and work with your health care provider to decide what kind of treatments fit best with your beliefs, desires, and life style. You might choose to be very aggressive, and use ARVs very early in your disease. You might be more conservative and decide to wait until you reach specific viral load or CD4 cell levels. It’s up to you. USING COMPLEMENTARY AND ALTERNATIVE THERAPIES People with HIV use many different kinds of treatments for their disease. Some people believe they have stayed healthier because they use traditional healing practices, massage, acupuncture, herbs, or other therapies. It is difficult to get information on how well these therapies work for HIV disease. Most of them are not studied the same way as western medicines. That doesn’t mean they don’t work, but you may have to find other ways to check them out. Remember, there are no "miracle" cures. If it sounds too good to be true, be very careful. GETTING HELP You can get help from a case manager at a local AIDS service organization. Check with your local health department. A case manager will give you confidential help to find out about and receive HIV/AIDS services. You can also check on the Internet for HIV/AIDS information and services. THE BOTTOM LINE There are things you can do to stay healthier with HIV disease. You can learn more about the disease, monitor the health of your immune system, and decide how you want to deal with your health. Remember, you are in charge of your own health care. You will decide which health care provider to work with, and whom else you want to consult about your treatments. You will decide which treatments you want to use and when you want to use them. Take your time and learn about