An Outline of Positive Life

An Outline of Positive Life For people who have newly discovered they are HIV positive. 1 Introduction The Aim of This Meeting The aim of this meeting is to provide PWHAs (People Living with HIV/AIDS) with information that is necessary for their daily life and helps them live healthy and productive life. Qualifications for Attending This Meeting ① Only PWHAs may attend this meeting. ② You are kindly asked to leave this room if you have not confirmed your HIV status unless you are administrative staff, a lecturer or an advisor. ③ Partners, family members and friends of PWHAs are no exception to the above conditions. 2 Grand rule (1) 1. We have the following rules so that you can attend the meetings without anxiety. 2. You may not attend the meetings if you cannot follow the rules. 3. You may be asked to leave the room even after the meeting has started. 4. If you choose to attend a meeting, then, we understand that you agree to the rules about attending the meetings. 3 Grand rule (2) Please do not communicate to anyone outside this room any information that would lead to the identification of people who attend this meeting. This includes names, nicknames, sexuality, jobs, and seemingly unrelated information, such as where they live, where they often visit, and how they look like and so on. Those information, when combined, may lead to the identification of an individual. Different people have different values. Please do not criticize others one-sidedly or impose your opinion on them but respect the stance of each other. We ask you to follow the instructions of the hosts all the time. 4 Grand rule (3) JaNP+ does not necessarily agree to all the information provided in this meeting. We provide it in order to show some examples of many different thoughts. Please try to gather information from other sources, consult with doctors and other specialists, choose information on your own judgment and put it into action at your own responsibility. Individual consultations will not be carried out in this meeting. We appreciate your cooperation to make sure the opportunity to ask questions and speak out for as many participants as possible. Although the hosts do their best to ensure that your privacy is protected so that you can relax and enjoy yourself. Be aware that it is impossible to guarantee absolute privacy. Please use your own discretion when revealing your own private information. 5 Part１ An Outline of Treatment and Positive Life 6 What Does it Mean to be HIV Positive? 7 Human Immuno-deficiency Virus HIV is the virus that causes AIDS. Once HIV has entered into your body, then, it destroys your immune system little by little for a long period of time. Being infected with this virus is called HIV positive. With HIV infection, bacteria, viruses and other microbes, which would cause no harm without HIV infection, cause symptoms of the diseases known as: ＨＩＶ ＡＩＤＳ Acquired Immuno-Deficiency Syndrome 8 HIV infection progresses slowly. No Panic! HIV infection and VL / CD4 count Viral Load (VL) : the number of viruses in 1ml of blood Speed of progress of HIV infection CD4+ lymphocytes Status of immune system CD4 count Viral Load (VL) Set Point ①Acute infection ②Asymptomatic period (no symptoms) ③AIDS symptoms 9 You can suppress HIV for a long time through the use of drugs. ART / HAART and Viral Load (VL) Taking ARVs with frequent missing doses (Resistance developed) Not taking ARVs VL Start taking ARVs Taking ARVs fully undetectable Transmission of HIV ART: Antiretroviral Therapy HAART: Highly Active Anti-Retroviral Therapy ARV: Antiretroviral HAART Time 10 So, even if you have been infected with HIV you can live a relatively long, healthy and happy life! 11 Let’s Go to the Hospital + In order to stay healthy it is important to know the condition of your body. Please have a regular health checkup once every one to three months. PINKBEAR HOSPITAL 12 Choosing a Hospital Hospitals are where we make sure our state of health. • Know the type of doctors that suits you as a person. • It is one thing a doctor is famous, but it is quite another whether or not he is a good doctor for you. • Choose a hospital that is convenient for you. (e.g. easy to go, easy to make appointments) • Get information about the hospital and the doctor from NGO advisers and PWHAs using that hospital. 13 Starting Treatment Treatment does not necessarily mean just taking drugs in order to prevent AIDS. The main form of treatment for PWHAs is to get regular checkups that will enable us to understand our own conditions in order to maintain our own health. If you have some symptoms for a particular disease, your priority is to take care of the disease first by taking advantage of the checkups. 14 You are the main player in the treatment “I make the decisions”. “I can change hospitals if I want to”. “I can seek the second opinion”. “I can use peer support group”. “I can get support from NGOs”. “Because I play the star role in the treatment”. 15 What’s the point of treatment? QOL (Quality of Life) To allow PWHAs to enjoy a high quality of life both physically and mentally 16 Starting Treatment ≠ Taking ARVs (Antiretrovirals=Antiretroviral Drugs) Treatment starts with knowing your health conditions in detail. Watching out for HIV to develop full-grown AIDS takes longer time than most people think. Take your time! 17 To understand the condition of your body Blood tests at regular checkups enables you to monitor the strength of your immune system by CD4 count and the amount of the virus by VL (Viral Load). 18 CD4 and OIs (OIs=Opportunistic Infections) Relationship between CD4 counts and possible OIs Shingles (Herpes Zoster) TB (Tuberculosis) KS (Kaposi’s Sarcoma) *CMV=Cytomegalovirus CD4 counts PCP (Pneumocystis Carinii Pneumonia) Thrush (Candidal Infections) Cryptococcal Meningitis Toxoplasma encephalitis (an infection of the brain) CMV* retinitis (a CMV infection of the eye) Atypical mycobacteriosis Malignant Lymphomas HIV dementia or encephalitis (HIV infection of the brain) 19 Time What do the Figures Tell Us? Check your data for your better health ! White blood cells: The cells of the immune system This relates to the CD4 count Lymphocytes: Parts of White blood cells. Main players of immune system. Low lymphocyte count generally means weak immune system CD4 cells and CD8 cells are parts of lymphocytes CD4 cells： The Commanding Officer of the Army that is called “Immune System.” CD4 cells are those cells that HIV infects. The CD4 cell count is good indicator of the strength of the immune system. CD8 cells： The soldiers in frontlines of the Army of the “Immune System”。 CD4/CD8 ratio: Without HIV infection CD4 count is larger than CD8 counts。 Viral Load： An important indicator to evaluate your response to HIV treatment. 。 Viral load is a direct measure of the treatment’s effectiveness. Red blood cells: Red blood cells carry oxygen to all parts of the body. Low red blood cell counts cause anemia. This is also used for checking side-effects of AZT or other drugs for OIs. MCV：Size of Red blood cells. This will become larger if you take AZT. Platelets: Platelets are responsible for the clotting of blood, so low platelet counts can cause a tendency to bleed excessively from minor cuts or injuries. GOT (AST) / GPT (ALT)：High counts for these indicate liver trouble. Some ARVs (e.g. PIs / EFV) cause liver malfunction. Cholesterol / Triglyceride：High counts for these indicate body fat troubles. 20 Build a Vision for Your Treatment ① Make sure the condition of HIV and your immune system and take steps to prevent OIs (opportunistic infections). ② Before ART (antiretroviral therapy) first undergo necessary treatment for whatever diseases you already have. ③ ART helps you recover your immune system and keep a healthy life HIV Infection Set Point Effective Treatment Viral Load Speed at which Disease Progresses Reduction in Viral Load 21 Antiretroviral Therapy (ART)  HIV is suppressed by taking ARV (Antiretroviral) drugs. Basically you should take three or more kinds of drugs. This is known as combination therapy or HAART (Highly Active AntiRetroviral Therapy). You have to take ARVs consistently and accurately. If you stop taking pills, if you miss doses frequently, or if you reduce the number of pills, the virus can develop resistance to the drugs. Once resistance develops, effectiveness of the drugs is usually lost forever for you.  ARVs can cause side effects. Not everyone, however, experiences such side effects. As of April 2004 there are 17 kinds of ARVs approved for use in Japan. 22 The Goals of ART* *Antiretroviral Therapy The Goals of ART To keep VL (Viral load) as low, preferably undetectable, as possible for a long time possible. To recover and maintain immune system. To improve QOL (Quality of Life). To reduce opportunistic infections (OIs) and HIV-related deaths. How to achieve the Goals To maintain high adherence to taking ARVs (more than 95 %) To chose the most suitable therapy strategy for you To make allowances for ARV-options after the first regimen To take resistance tests if necessary and possible 23 When to start taking ARV ? (ARV: Anti-retrovirals or Pills) Chart: Criteria for starting ARV With some clinical symptoms of AIDS Regardless of CD4 count & Viral Load Start taking ARV Without clinical symptoms of AIDS CD4 count <200 200-350 >350 >350 Viral Load Regardless of VL Regardless of VL >55,000 <55,000 Recommendation Start taking ARV Start taking ARV If VL is relatively stable at low level, regular checkups & no need of ARV. Regular checkups. No need of taking ARV 24 You Have the Choice “Take No Drugs” Merits ① You can wait for the better choice that suits you most. ② You can continue to lead a life as normal for you as ever for a while. (Of course there are no side effects.) Risks ① It is easier for your partner to get HIV. ② If you developed AIDS, the damage to your body could be worse. 25 The Merits of HAART (Highly Active Antiretroviral Therapy) You can suppress and control HIV. The typical combination therapy is a mainstay strategy according to HAART guidelines. It is possible to delay the onset of AIDS for a quite long period of time. Although this differs from person to person, it is possible to delay the onset of AIDS by 10 to 20 years, and possibly for even longer with new drugs currently being developed. 26 Shortfalls of HAART • You must take drugs for the the rest of your life. In other words, basically no drug holidays. • Your QOL (quality of life) may become worse as a result of side effects. • Pill schedule might control your life. (Pill slave!) Job is difficult enough as it is! I don’t want another burden of taking drugs for the rest of my life. 27 Types of Drugs / ARVs (ARVs = Antiretrovirals) • (NRTIs) Nucleoside Reverse Transcriptase Inhibitors e.g. AZT, ddI, d4T, 3TC,ABC, etc • Protease Inhibitors e.g. IDV, RTV, SQV, APV, NFV, LPV, etc. (Inhibiting an enzyme called protease that is critical for assembling the complete virus after it has reproduced) • (NNRTIs) Non-Nucleoside Reverse Transcriptase Inhibitors e.g. EFV, NVP,DLV (Inhibiting an enzyme called reverse transcriptase that is critical for survival or replication of HIV) Normally 3 to 4 kinds of ARVs are used in combination. 28 Standard Model for ART (ART: Anti-Retroviral Therapy) Combination Therapy 2 NRTIs (Nucleoside Reverse Transcriptase Inhibitors) + 1 or 2 PIs (Protease Inhibitor) + or 1 NNRTI (Non-Nucleoside Reverse Transcriptase Inhibitor) 29 Which ARVs to Take ? • Discuss fully your lifestyle with your doctor. • It is also important not to be too influenced by information about side effects. It is important to know your own body. • You will also find you must not take some drugs because of interaction with other drugs you are taking. Do not take over-the-counter drugs without checking the interaction with a specialist. 30 For our better health Some have not yet started taking ARVs. Others have just recovered from an OI*. Heath conditions differ from person to person. However, we have one thing in common. We want to try to lead a healthy life. Let us do our best together for better health than ever. *OI= Opportunistic Infection 31 Part 2. Daily Life Everything You Do is for Yourself You do not have to change your lifestyle 32 ① Working Life ★ Money! Money! Money! — Medical cost — Resources: National Health Insurance, Employees’ Health Insurance, Medical Cost Assistance for the Disabled, Rehabilitation Cost Subsidy, etc. • In application for the systems, some doctors and hospitals are very strict about the qualification, but others are friendly to PWHAs. You can change doctors and hospitals for your best interests. • You can make applications any time. • Those systems exist for you. 33 ★ At Work You do not have to quit your job. — Keep working ! • Dealing with Your Company  Whom to Telll? The personnel department?, your immediate supervisor? the executives?, etc. Why to Tell? You are not obliged to tell. But telling people might make things work more smoothly.  Check the stance of your company about hiring the disabled / PWHAs before telling. You have the right to decide “To tell or not to tell.” When you have told your HIV status, you are advised to ask your company to give you the list of the staff members who share the information about your HIV status in writing. 34 ★ Changing Jobs / Looking for Jobs • You can take advantage of Job Placement Agencies for the Disabled. HIV is regarded as a disability. Take a look at their web-sites. e.g. Sa-na http://www.web-sana.com/ • In reality some companies do not want to hire PWHAs. But other companies are willing to hire PWHAs. • If you don’t find the job at the first application, do not give up! Do not get depressed! Keep looking! 35 • Big Companies are obliged to employ a given number of Disabled according to the size of the company. Not many companies meet this obligation. → We can take advantage of this system because HIV is regarded as Disability. 36 • Just because you are disabled does not mean you will be hired. “No skills, no jobs”. This is the same as in the case of job hunting for the non-disabled. 37 Merits and Demerits of Job Opening for the Disabled Merits • Easy to take time off when you are in bad condition. • Release from heavy duties. Demerits • Usually employed on a contract basis not on a permanent basis. Salaries and benefits are lower. • Mostly routine works. Not much hope for promotion or building a career. 38 ② Private Life ★ Telling Family and Friends You are not obliged to tell. Even If you would like to tell, take your time. Think carefully beforehand how to tell. Think about the way they can take it easily. It may be a good idea to take them to see your doctor, nurse, NGO counselor, etc. and have them explain about HIV for you. You can tell not for them but for you. By telling, you might get support from them, or you might feel at ease. 39 ★ Your Sex Life You do not have to give up sex. You are not obliged to tell your HIV status before having sex as long as you stick to safer sex. Demerits of Not Telling * You might become less careful in safe sex. * It may be more difficult to build a relationship with the person when you tell your HIV status afterward than when you tell it beforehand. * The legal risks if you infect someone. e.g. criminal injury, civil compensation. * You will decide whether or not to tell. Think carefully about personality and characters of the person and make a careful decision. 40 Let us have safer sex even with other PWHAs in order not to get resistant virus. Safer sex not only protects your sex partner but protects you as well. Of course it also protects you from STIs* other than HIV. *STI: Sexually Transmitted Infections 41 42