Model YOU ARE NOT ALONE Health and Treatment for HIV Positive Young Men of Color
FOREWORD HIV is a common risk for young men of color. In 2006, young men of color accounted for about 70% of new HIV infections for males aged 13 to 29. Among gay I knew I was HIV positive, and I knew that at some point I was going to have to start the journey. Sergio, 28 This brochure was created with the help of young men of color who are gay and HIV positive. They live with the virus. They ve heard many of the myths and misinformation people have about HIV, AIDS, and treatment. We hope that their experiences can help people who have HIV seek support, care, and treatment, and once in treatment to stay on the program. 2 and bisexual men of all age groups, the majority of new HIV cases occurred among Blacks and Latinos. People who receive a HIV positive diagnosis often respond with shock, confusion, anger, and self-isolation. For young men of color, other issues add to the worry that comes with the diagnosis. Discrimination, shame, and misperceptions about treatment keep a lot of young men away from the support they need in order to lead a healthier lifestyle but it doesn t have to be this way. 3 Model
He said, It s not a death sentence. It s just that now you have to be more responsible for what you do. James, 21 DIAGNOSIS: Learning that you have HIV and working with your doctor to manage your condition REACHING OUT: Building trust and a base of knowledge that enables you to seek services and support In the last 20 years, advances in supportive services and treatment have changed what it means to be HIV positive. HIV positive people who begin drug treatment before the onset of AIDS can improve their hopes of fighting the disease. AIDS service organizations and community groups provide programs on health and wellness, discrimination, stigma (related to race, HIV status, or sexual orientation), housing, education, workforce development, and other issues. Support groups for young gay men of color, often led by peers, can help to create social networks that improve access to care and healthier living. In this brochure we discuss 6 phases of living with HIV and positive steps you can take to manage your condition. DOING HEALTHIER THINGS: Engaging in activities that can help you maintain a healthier lifestyle, avoiding risky behaviors and substance 4 abuse, and giving back to your community as a 5 volunteer and peer LIVING BEYOND HIV: Dealing with the non-medical ways in which HIV can impact your life SEEKING CARE: Finding the right combination of support, services, and health care LEARNING ABOUT TREATMENT OPTIONS: Medications that can help manage the effects of HIV
DIAGNOSIS I can t change what happened back then. But I can move forward. Carlito, 23 6 7 Model Learning that you have HIV can be a shock. A lot of things can seem wrong at once. For some, the diagnosis comes with the discovery of betrayal by their partner. Others feel guilty and worry that they might have infected someone else. A sense of stigma feeling marked as different or shameful in the eyes of others is common. Diagnosis can also bring other issues into focus. Some people who are newly diagnosed haven t come out to their families or friends and HIV only makes it harder. Some in your community or your church might reject you. For those who are out, family and friends may not be ready to deal with HIV. In the broader society, HIV adds one more layer of discrimination that makes it harder still for young Black and Latino men to find and keep a steady job. There are steps you can take to deal with HIV in a positive way. You can start by reaching out to others and avoiding the isolation that sometimes comes with guilt and shame.
REACHING OUT Models Some people find support groups to be helpful in breaking the cycle of emotions that lead to isolation, 8 Having a network or a circle I can trust, depression, and behaviors that can cause your health 9 or even one person, helps to ease a lot of to decline. There are a lot of different kinds of support groups for people of any race, for Black men, pain and frustration. Latinos, young men, people with substance abuse Darrell, 21 issues, etc. Other people find comfort in giving back to their community volunteering, joining a club, or keeping a job and doing it well. Reaching out is often the first, positive step people diagnosed with HIV can take. If friends and family aren t supportive, try speaking to a counselor. Many places that provide HIV testing have staff who are trained to help people with the challenges of HIV diagnosis. Your doctor and other people in social services can also help you find support and provide you with information on treatment. In either case, AIDS service organizations as well as other community groups and some churches can help you find activities that build trust and enable you to spend time with others. Some people prefer to leave their neighborhoods, while others don t mind staying local. Feel free to experiment, to try different things until you find what works for you. You have choices in your life and you are in control.
Model DOING HEALTHIER THINGS It was time to get my life together. HIV was not something that was going to break me. It made me want to take care of my body, stop drinking and drugging like I used to do. Corey, 26 10 11 For some, getting high is just part of the lifestyle, while for others, substance abuse can become a life threatening problem. Drinking and getting high can present special dangers for a person with HIV, potentially increasing the chances of sexually risky behavior that can transmit the virus to others. Alcohol and other drugs can interact with HIV treatments as well. Counselors and case workers in AIDS service organizations can help you identify ways to reduce drug and alcohol use while you explore other ways to lead a healthier lifestyle. Model Along with reducing your exposure to drugs and alcohol, there are other beneficial things you can do as you learn how to maintain a healthier lifefstyle. This includes controlling your diet, exercising, and paying attention to other health concerns. Finding ways to spend time with others, whether seeking support or providing support, can have positive effects on emotional well-being and your sense of personal effectiveness.
LIVING BEYOND HIV I try to surround myself with people who went through it. They know what they re talking about. 12 13 Marco, 24 Model HIV can affect more than just your health. It can add another layer of discrimination to the racism and anti-gay prejudice in society. It can affect your ability to find or keep a job. In order to help people stay on track with their care, many community organizations offer different services and programs for people living with HIV and AIDS. Some of these organizations work specifically with people that have HIV. Many have special programs that involve not only HIV but also education, job training, substance abuse, legal aid, and help with housing. People who are already living with HIV can help you can find support services. They understand how the virus can affect your well-being. They can guide you to others whose experiences will be even more helpful with a variety of challenges, including coming out, homophobia, HIV stigma, racism, community attitudes, building healthy relationships, and living with pride. In addition, many service organizations can provide volunteer opportunities that allow you to give back to the community.
SEEKING CARE My doctor actually sits down and tells me everything about my treatment. He prints out the information and gives it to me. James, 21 If you are HIV positive, it is likely that you will need 14 treatment one day, even if that day seems far from 15 now. When to start treatment is a personal decision that each HIV positive individual must make on his or her own, in consultation with health care providers. It is important to talk to your doctor about when to start treatment and make sure to start only when you are ready to take medications every day. Some doctors Model recommend starting early, while you still feel well. Others recommend waiting. Regular blood tests can help to determine the level of HIV in your body and Seeking care is the process of support and treatment how it is affecting your immune system. If you feel it s you develop with service organizations and your necessary, seek a second opinion, or talk to other HIV doctor. Care touches on every aspect of your life positive people who have made the decision already. with HIV, including nutrition, mental health, and, when appropriate, drug therapies for HIV and AIDS.
LEARNING ABOUT TREATMENT OPTIONS 16 17 It was really important to me to know that if I stop my medication, I could grow resistance to it. Miguel, 24 HIV medications can be very effective. In some cases, medication can significantly reduce the presence of the virus in your blood stream. Side effects vary from drug to drug. Work with your doctor and other health care providers to ensure that you are receiving the best combination of medications for your condition. Models The effectiveness of today s medications can lead some to feel as if they re cured but this is a misperception. There is no cure for HIV. Not adhering to treatment can allow the virus to multiply, make you more sick, or may result in you becoming resistant to treatment in the future. Once you are in a treatment program, staying with it can help avoid challenges in the future. By taking care of yourself and reaching out for support, you are taking steps in a positive direction.
MANAGING LIFE WITH HIV I m glad I have friends that are positive. They know what I m going through. They re telling me, Take your meds. Beyond HIV. Try to live beyond HIV, both by giving back to your community and seeking whatever help you need with housing, employment, and education. Factors such as job insecurity, poverty, a lack of access 18 to health care, homelessness, violence, or the threat of 19 Take your meds. Malik, 19 Build a positive cycle of support and care. Because of the stigma and life-altering consequences often associated with HIV, people who have the virus may need to pay special attention to their emotions and state of mind in order to avoid isolation or fear. By following the steps outlined in this brochure reaching out, doing healthy things, living beyond HIV, seeking care, and learning about treatment options you can create a positive environment that can benefit your health. It s in your hands. crime can add to the stress on your immune system, above and beyond HIV itself. Community organizations and churches also have programs for people with HIV that seek to address these needs. Once you are in treatment, stick with it. Find a time of day that reminds you to take the meds for example, along with other habits that you do every day at a set time, like brushing your teeth. If you feel comfortable asking your friends or family to help, it can help spread the responsibility around, so it s not all on you. The best answer is to learn as much as you can about HIV, stay informed about new developments, and remember that you are not alone.
IMPORTANT DEFINITIONS ANTIRETROVIRAL THERAPY (ART) is treatment that CD4 CELLS are a kind of white blood cell (also called reduces the ability of HIV from multiplying in the body. T-cells ) that fight infection in your body. HIV infects The treatment could involve multiple medications, which CD4 cells, that weaken the immune system. work together to attack HIV and reduce its effects on 20 your body. This is also called Combination ART or A CD4 CELL COUNT measures how many CD4 21 HAART, for Highly Active Antiretroviral Therapy. RISK FACTORS are things that people do which increase their chance of being infected with HIV. Examples include having sex without using condoms, having sex with multiple partners, injecting drugs or steroids, using a syringe that was shared with others, exchanging sex for drugs or money, or having unprotected sex with someone who has any of these risk factors. cells are in a sample of blood, which can help to understand the health of your immune system. A CD4 count between 500 and 1,600 in each microliter (mm³) of blood a very small droplet is considered normal. An individual s CD4 count can vary, however. In HIV positive individuals, a CD4 count at or below 200 cells/mm³ is considered an AIDSdefining condition. VIRAL LOAD is a measure of HIV in a sample of your body s fluids, usually blood plasma. Knowing your viral load helps your doctor understand how HIV is affecting you.
RESOURCES FOR SUPPORT 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 http://www.cdc.gov/hiv Main Site: http://www.poz.com 22 African-American Hub: http://www.poz.com/aa 23 Project Inform is a San Francisco-based AIDS Meds: http://www.aidsmeds.com/aboutus.shtml organization dedicated to providing health and treatment information to people living with HIV and AIDS anywhere in the nation. 1-800-822-7422 http://www.projectinform.org The Body is a Web site that is dedicated to providing up-to-date information about HIV, AIDS, treatment, specific medications, side effects, and living well. http://www.thebody.com POZ Magazine publishes articles on health and HIV. It is available in paper and on the Web. On the Web, POZ has specific hubs (Web sites with articles and links across all POZ resources) for African Americans and other communities. 9 and ½ Minutes is an informational Web site with resources for living with HIV, along with a video-based stories by HIV positive people. http://www.nineandahalfminutes.org/voices-of-experience.php 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
RESOURCES IN YOUR AREA: NOTES: 24 25
NOTES: 26 DISCLAIMER: Models are used for illustrative purposes only. Statements included in this publication are not those of the models. All names have been changed to respect the confidentiality of the persons who participated in this project.
This material has been developed by GMHC and is paid for by Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. Copyright 2011 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. 21005066(1)-04/11-ISN Printed in USA Minimum 10% Recycled Paper