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You Are Not Alone
- 1. You Are NotAlone Health and Treatment for HIV-Positive Latinos Provided as an educational resource by Merck.
- 2. “I think thatit is important that my generation reach acceptance and be open with our status, to prove to ourselves and others that we’re just like everybody else.” Foreword HIV affects young Latino gay and bisexual men at higher rates than most other populations. A lack of access to culturally appropriate health care and HIV testing opportunities make it difficult for many Latinos to learn if they have HIV. Homophobia and stigma may contribute to feelings of shame and prevent communication about HIV. This booklet was written with the help of HIV-positive Latino gay and bisexual men. They shared their stories to help others find the support and treatment they need. Some were newly diagnosed, while others have been HIV-positive for many years. They told us that it’s important to remember that you are not alone, and we hope that this information will help you seek support and treatment. 2 3
- 3. In the last30 years, advances in supportive services and treatment have changed what it means to be HIV- positive. HIV-positive people who begin treatment may improve their overall health. Latino gay and bisexual men are greatly affected by HIV, and often live in places that lack services to support those who are positive. In some Latino communities, homophobia, harassment, and stigma about HIV infection prevent people from talking or learning about it. This can make some men feel alone and ashamed that they are HIV-positive. You are not alone. In this booklet we discuss what it’s like to live with HIV, and the steps you can take to be healthier. “Hope is very important because it reminds us that life goes on.” Learning that you have HIV, working with a health care provider to evaluate your condition, and knowing what to expect after diagnosis 6 DIAGNOSIS 8 FIRST STEPS 10 SELF-CARE 12 LIFE GOES ON 14 SEEKING CARE 16 LEARNING ABOUT TREATMENT OPTIONS Reaching out in order to begin addressing your needs Engaging in activities that can help you maintain a healthier lifestyle, both physically and emotionally Focusing on ways in which HIV can impact your life outside of medical care Finding the right combination of support, services, and health care Understanding how to manage your HIV medication 4 5 Table of Contents
- 4. Diagnosis Diagnosis begins withlearning that you have HIV. It’s important to get tested early so that you consider your HIV status when making decisions about your health. After receiving your initial positive result, further testing will be required. Learning that you have HIV can be a shock. For some, an HIV diagnosis is a wake-up call and motivation to focus on your health. Regardless of your first reaction, you may go through various emotional stages, including denial, anger, sadness, isolation, fear, and changes in your relationship with sex. These are all normal reactions, and in most cases these feelings will pass. Reclaiming your life from these feelings can begin with reaching out to others, which is one of the first positive steps you can make after diagnosis. “I didn’t have sex for a while after my HIV diagnosis.” 6 7
- 5. “When someone isrecently diagnosed they may not know where to go, and if they’re discriminated at home, it’s that much worse.” One way to handle your positive HIV test result is to begin reaching out. Most places that provide HIV testing have trained staff to help you work through your diagnosis, and guide you to the support and other information you may need. Reaching out can also help you deal with the stigma that you may experience out in the world or within yourself. Many people fear being rejected because of their HIV- positive status. Counselors at community organizations can assist you with learning how and when to disclose your status. Talking to other HIV-positive people can also ease your fears and provide you with emotional support. For some, support groups are helpful in dealing with the isolation and emotions that often follow an HIV diagnosis. These emotions can lead to risky behaviors that affect your health. Support groups can also help you meet others living with the same issues. Support groups may be held at community organizations, clinics, and AIDS service organizations. But not everyone feels comfortable sharing their experiences with a group or has access to one. For some, one-on-one counseling works better. Some people prefer to leave their neighborhood to find support. Others don’t mind staying local. Choose what works best for you. 8 9 First Steps
- 6. “I’ve been positivenow for 4 years and I’ve come to the conclusion that it begins internally.” For some men, using alcohol, tobacco and other substances is a concern. Some use drugs to feel better or numb themselves from their troubles. Use of drugs can affect your overall health and judgment, increasing your chances of engaging in risky behaviors and contracting other sexually transmitted infections. Self-care is important for all, but particularly for those with HIV. Taking control of your diet, exercise, sexual health, and substance use can help you stay healthier. Eating the healthiest food available and exercising regularly not only makes you look good but also feel good. Some AIDS service organizations in your community may have nutrition programs, food pantries, and wellness services. The ways you engage in sexual relationships may change. For some men, finding out they have HIV makes them feel like they can no longer have an active sexual life. But this isn’t the case. It’s important to educate yourself on how the virus is transmitted and avoid behaviors that may put you or a partner at risk for sexually transmitted infections, including HIV. HIV cannot be transmitted by touching, hugging, or closed- mouth kissing. HIV is generally transmitted via sexual intercourse and sharing needles and works with someone who is HIV-positive. The virus is found in blood, semen, pre- ejaculatory fluid, breast milk, and vaginal fluids. Unfortunately, not everyone has access to this information, and you may have to educate your friends, family, and partners. Talking about safer sex with your partner can be uncomfortable, but health care providers and AIDS service organizations can help you with these conversations. Self-Care 10 11 “It’s important to stay on your medical regimen, and you should also place emphasis on your lifestyle.”
- 7. At first, youmay feel like your identity is all about being HIV-positive. But it’s important to understand that it’s only part of your life. Focusing on education, employment, and community involvement can help you feel empowered and in control. Continuing your education and pursuing your goals not only helps you financially, but can also provide new opportunities that you may not have thought possible. HIV may not be your only challenge. Homophobia and HIV-related stigma are still major problems for HIV-positive gay and bisexual men. Young gay men in particular still struggle with issues of bullying and harassment. In addition, your health can be affected by many other concerns, like job issues, homelessness, lack of health care, poverty, immigration status, and violence. These things often need to be addressed on their own, or while seeking care for HIV. Community-based and AIDS service organizations can help you with these challenges. Life Goes On “I informed myself as much as I could about what’s going on in the epidemic, that way I am able to share the information with others.” 12 13
- 8. Seeking care isa personal journey. It can be impacted by every aspect of your life, including nutrition, mental health, rehabilitation, and immigration status. When appropriate, it may include drug therapies for HIV. It is important to find health care providers and professionals who understand how HIV can affect you. Seek those who are familiar with Latino culture, Spanish language, and the treatment of gay and bisexual men with HIV. If you are HIV-positive, it is likely that you will need treatment one day, even if that day seems far from now. When to start treatment is a decision that each individual must make with the help of health care providers. Regular blood tests can help to keep track of the level of HIV in your body and how it is affecting your immune system. If you feel it’s necessary, seek a second opinion, or talk to other HIV-positive people who have already made the decision to start treatment. Seeking Care 14 15 “To commit to taking medications you need to be ready to take them properly because if you don’t they may not work as well.”
- 9. HIV medications canbe effective when taken as instructed by a health care provider. In some cases, treatment can reduce the presence of the virus in your blood. Side effects vary from drug to drug, and from person to person. Work with your health care provider to make sure that you are taking medications that are right for you. The effectiveness of today’s medications can lead some to feel as if they’re cured—but this is not correct. There is no cure for HIV. Not taking your medication can allow the virus to multiply, make you sicker, or may result in you becoming resistant to treatment. Once you are in a treatment program, stay with it. Learning About Treatment Options “We need to let people know that there are options and resources today.” 16 17
- 10. 18 19 “I thinkyou tend to surround yourself with more HIV-positive people to get support, but it doesn’t matter whether you’re positive or negative to be in a friendship or relationship with somebody.” The stigma often associated with HIV may make you feel like you are alone, but you’re not. Building a community of people to support you, professionally and personally, can help. In the beginning, you may feel like you can only relate to other men like you who are HIV-positive. It is important to remind yourself that friends and family who are HIV-negative can be a good source of support. Once you have made the decision to enter care and treatment, stick with it. Find a way to make medication part of your routine. If you feel comfortable asking your friends or family for support, then it’s not all on you. Learn as much as you can about HIV. Stay informed about new developments. The more you know, the more choices you have. You Are Not Alone
- 11. Human Immunodeficiency Virus(HIV): is a virus that attacks your immune system, your body’s main defense against infections, and prevents it from doing its job. Risk Factors: are things that increase the chance of someone being infected with HIV. Examples of behavioral risk factors are having unprotected sex, sharing needles and works, including for hormones, and sharing tattoo and piercing equipment with an HIV-positive person. Examples of societal risk factors are poverty, discrimination, stigma, and lack of access to education. CD4 Cells and Count: CD4 cells are a type of white blood cell, called T-cells, that fight infections in your body. HIV infects CD4 cells, and eventually reduces their numbers in the blood. This weakens the immune system. A CD4 cell count measures how many CD4 cells are in a sample of blood, which is used by a medical provider to understand the health of your immune system. An individual’s CD4 count can vary. A count greater than 500 in each microliter (mm3 ) is considered normal. Acquired Immune Deficiency Syndrome (AIDS): is a disease caused by HIV. AIDS is diagnosed by a medical provider based on the health of a person’s immune system, which is measured by a CD4 cell count and any opportunistic infections (AIDS-defining illness). Viral Load: is a measure of HIV in a sample of your body’s fluids, usually blood. Knowing your viral load helps your medical provider understand how HIV is affecting you, as well as helps determine when to begin treatment. Opportunistic Infections: are infections caused by particular pathogens that take advantage of a compromised immune system, like the immune system of someone who is HIV-positive. Antiretroviral Therapy: is the treatment that helps to control HIV from multiplying in the body, and can help slow the progression of opportunistic infections for a period of time. Usually, treatment involves multiple medications, which work together to attack HIV and reduce its effects on your body. This is also called “Combination ART” or “HAART,” for “Highly Active Antiretroviral Therapy.” Important Definitions 20 21
- 12. National Resources TheBody is a Web site that is dedicated to providing up-to-date information about HIV, AIDS, treatment, specific medications, side effects, and living well. Main Site: http://www.thebody.com En Español: http://www.thebody.com/espanol The National Domestic Violence Hotline is a hotline service available for victims and anyone calling on their behalf to provide crisis intervention, safety planning, information, and referrals. Assistance is available in English and in Spanish. 1-800-799-7233 Main Site: http://thehotline.org En Español: http://www.thehotline.org/en-la-linea-nacional- sobre-la-violencia-domestica WebMD is an informative Web site on medical issues. WebMD has a list of HIV and AIDS hotlines and information resources for support and treatment. http://www.webmd.com/hiv-aids/aids-helplines 22 23 National Latino AIDS Awareness Day (NLAAD) Network organizes a national day of HIV awareness and testing for Latinos on October 15th of each year. They also provide information about HIV and AIDS, tips for people living with HIV, and national testing resources on their Web site. Main Site: http://www.nlaad.org En Español: http://www.nlaad.org/esp The Centers for Disease Control’s (CDC) National AIDS Hotline allows you to speak with a person about local service organizations, counseling, support groups, and treatment. 1-800-232-4636 Main Site: http://www.cdc.gov/hiv En Español: http://www.cdc.gov/hiv/spanish Project Inform is an organization dedicated to providing health and treatment information to people living with HIV and AIDS. 1-800-822-7422 Main Site: http://www.projectinform.org En Español: http://www.projectinform.org/espanol
- 13. Resources In YourArea Notes 24 25
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- 15. Copyright © 2013Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1012676-0010 03/13 Printed in USA Minimum 10% Recycled Paper Provided as an educational resource by Merck. Merck Sharp & Dohme Corp., Inc. has provided funding to GMHC for the development of this resource. GMHC 446 West 33rd Street New York, NY 10001 www.gmhc.org Hotline 1-800-243-7692 Derechosdeautor©2013MerckSharp&DohmeCorp., unasubsidiariadeMerck&Co.,Inc. Todoslosderechosreservados.INFC-1012676-001003/13 ImpresoenlosEE.UU.enpapelconun10%mínimodematerialreciclado. UnrecursoeducativoproporcionadoporMerck. MerckSharp&DohmeCorp.,Inc.haproporcionado financiaciónaGMHCparaeldesarrollodeesterecurso. GMHC 446West33rdStreet NewYork,NY10001 www.gmhc.org Líneadeayuda:1-800-243-7692
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