Learning About and Living With HIV/AIDS
Since the world first became acquainted with AIDS more than 20 years ago, the research and literature available about the subject has grown in leaps and bounds. Just try typing “AIDS” into any search engine and you’ll be bombarded with thousands upon thousands of hits. By asking more specific questions about the subject, you can start using the Web to learn how to successfully live with the disease, talk to someone about HIV/AIDS, or get involved in activism organizations.
If you or a friend or family member has recently been diagnosed with HIV/AIDS, you probably have several questions that need answers. Living with HIV/AIDS can be a life-altering event, but with the right knowledge to work with, it is possible to feel more comfortable with the new world you’re facing. If you simply haven’t heard much about HIV or AIDS and want to learn more, check out the Web sites recommended in this section for a good overview.
- Understanding the terminology associated with HIV/AIDS is essential to making your research easier. HIV is the acronym for “Human Immunodeficiency Virus.” HIV may eventually develop into AIDS, which stands for “Acquired Immune Deficiency Syndrome.”
- HIV testing can be completed in a variety of ways. Some Web sites offer the chance to find a testing center near you that conducts tests in the method you prefer.
- There are myriad drugs and treatments available for HIV. Pharmaceutical companies’ Web sites can be very helpful in understanding what certain drugs do to treat the effects of HIV and AIDS, and often provide a list of potentially harmful interactions you should know about. But remember, these sites are also interested in promoting their products, so be sure to talk to your doctor to find out what treatment is best for you.
- The major health-oriented Web sites have sections on HIV/AIDS. Visit our findingDulcinea Health Web Guide for our recommendations of such sites, and for help assessing the credibility of health sites.
- Because one of the most common ways HIV is spread is through sexual activity, many HIV prevention efforts focus on safer sex practices. Be aware that some content you encounter may be very explicit in this regard.
To learn about HIV/AIDS in general …
AEGIS (AIDS Education Global Information System)
is the largest free library about HIV/AIDS in existence today. Look through such topics as exposure issues, living with HIV, and resistance testing. If you’re interested in law matters, Supreme Court decisions and the text of some law journals are available. An “Ask the Doc” section allows you to post a question about HIV/AIDS and receive a response either to your e-mail address or on a general forum. Be sure to follow the directions provided on the “Ask the Doc” page. Without a subject in the subject line of your e-mail, it could be rejected by spam filters. Publications from every major HIV/AIDS group in the world can also be located here.
describes itself as a complete HIV/AIDS resource. Read about everything from HIV prevention and testing to HIV treatment, hotlines and organizations, and what to do if you have just been diagnosed with HIV. The Body publishes current research about HIV/AIDS, offers an “Ask the Experts” forum where you can post your questions about HIV or AIDS, and provides inspiring stories of people living with HIV/AIDS. If you choose to visit this site often, the “What’s New” tab is particularly useful in highlighting new content about HIV/AIDS from week to week. By clicking on the “Connect” tab, you can access bulletin boards where various users are discussing topics related to HIV/AIDS. Registration is required to post messages.
The Centers for Disease Control and Prevention
also discusses HIV and AIDS in great detail, and has links to more specialized topics such as HIV/AIDS and African Americans, HIV/AIDS and women, HIV/AIDS and men, HIV/AIDS and pregnancy, and HIV/AIDS in prisons/correction facilities. Make sure to check the “HIV/AIDS A-Z Index” under the “Quick Links” section on the right side of the page. Here you’ll find a list of topics including blood safety, body piercing, and rumors about the spread of HIV.
does not have the wide variety of content available at thebody.com or aegis.org, but it does have a handy list of Frequently Asked Questions under the “Topics” tab that provides a quick reference to some of the questions you may have. Here you’ll also find Fact Sheets that offer more thorough coverage of topics such as nutrition, strengthening the immune system, and HIV medications.
To learn about the history of HIV/AIDS …
In Their Own Words
recounts experiences from researchers at the National Institutes of Health who first encountered AIDS. Read through early research articles, view images portraying the growth and spread of AIDS, and take a look at early efforts campaigning against the spread of AIDS. Unfortunately, the timeline section only traces the history of HIV/AIDS from 1981 through 1988, but this coverage does give a good picture of HIV/AIDS during those years.
To learn about HIV/AIDS prevention …
is an international AIDS charity that teaches its readers how to “avert” HIV and AIDS with articles discussing transmission of the virus. Think you know a lot about HIV/AIDS? Test your knowledge with one of the quizzes provided on the site. The PDF version of the quizzes offers answers to the questions once you are done taking a quiz, while the interactive online version does not. One great feature of this site is the “Stories & Views” section where you’ll find personal stories like “Women with HIV,” “Friends and family of positive people,” and “Positive teens’ stories.”
For HIV testing information …
National HIV Testing Resources
has a locator for finding an HIV testing center near you. Use the locator to find testing centers that meet a variety of criteria: free testing services, oral HIV antibody testing, rapid HIV antibody testing, anonymous services, or confidential services. The Web site explains the HIV testing process and has an added bonus of making its content available in Spanish.
Now that you know you are HIV positive, your medical care will become one of the most important aspects of your life. You’ll need to choose the right doctor to fit your needs, and begin to familiarize yourself with the medications that will help keep you healthy. All of this might seem intimidating, but there are Web sites that will give you suggestions to start managing your health.
- If you were recently diagnosed with HIV and have general questions about what HIV is or about risks you might face, review the Web sites recommended in the “HIV and AIDS: Causes, Prevention and Treatment” section of this guide.
- Many of the sites recommended in the previous section have “Just Diagnosed” or “Recently Diagnosed” areas that can get you started in answering, “Where do I go from here?” The sites suggested below will help you answer some of the other, more specific questions you may have.
- The findingDulcinea Health Web Guide recommends sites that will help you find a doctor and learn what kinds of questions to ask to get the most out of your visits.
For advice about choosing a healthcare provider and starting HIV management …
has a good discussion of what beginning steps to take if you’ve tested positive. The section titled “You’re Positive, Now What?” helps you choose a healthcare provider. Make sure to look at the HIV questionnaire in that section; it might be useful to you during a visit to the doctor.
Gilead Sciences, Inc.
has important resources to help you work with your healthcare provider, understand HIV treatment, and find an HIV specialist. Start with the “Living with HIV” area for tips on how to select and work with your doctor, then visit the “HIV Information Center” link to find an HIV specialist.
For information on HIV medications …
is a Web site founded and operated by people with HIV. If you have just been diagnosed with HIV, the site has a section that takes you step-by-step through the many things you’ll need to do like set up medical care, and learn about HIV/AIDS medications, drug interactions, and side effects as you start a drug regimen. If it’s personal stories or discussion forums you’re looking for, the site has blogs and message boards, too. You can read the message boards without registering, but you do need to register to post your own message.
The U.S. Food and Drug Administration (FDA)
offers a comprehensive discussion of approved therapies and treatments for HIV/AIDS, clinical trials and drug development, and new developments related to HIV or AIDS. To receive updates from the FDA about issues related to HIV and AIDS products, register on the e-mail list
available toward the middle of the page.
For questions about HIV/AIDS and pregnancy …
is based in the UK and offers sound advice regarding healthcare practices during pregnancy, postnatal care of a baby born to an HIV-positive mother, and some facts about HIV testing in pregnant women. You will have to contend with a few advertisements on this site, but they shouldn’t interfere with your experience in reading the material about pregnancy and HIV.
The March of Dimes
discusses HIV treatment during pregnancy, the effects of certain medications on babies, and which drugs could help improve the survival rate of babies with HIV. The content from this page might seem limited, but the available information is greater if you use the links provided. The content from the links teaches you about some of the medical procedures involved in pregnancies of HIV positive women, such as cesarean delivery, amniocentesis, and perinatal HIV. Click the National Perinatal HIV Consultation and Referral Service link
to access a free 24-hour advice hotline for HIV-infected pregnant women.
The Perinatal HIV Home Page
of the American College of Obstetricians and Gynecologists provides information about HIV and pregnancy. Use the links at the left of the page in order to access the Perinatal HIV content. The “Links to Related Sites” option is particularly useful and provides access to additional HIV/AIDS information.
To learn about the adoption of HIV positive children …
HIV Adoption or Adopt HIV
is run by a mother who adopted an HIV positive child. If you are willing to adopt a child who is HIV positive, this site can provide more information. Sign up for an adoption newsletter to receive information about HIV positive children who are waiting for adoption, or view lists of other children who have special needs other than HIV or AIDS. Not all of the sections of this site are complete, so keep checking back as more content is added.
offers a program called Chances by Choice, an international program dedicated to finding homes for overseas children who have HIV or AIDS. This organization works with both birth mothers and prospective adoptive parents. If you are looking to adopt, or if you want to place a child for adoption, check the “Contact Us” page to find contact information for those who can help. Under the “Our Programs” section, you can review the requirements of various adoption programs in the countries with which Adoption-Link works.
It can be difficult to talk to kids about HIV and AIDS. You might be asking yourself: How do I explain things in a way the children will understand? How much information is too much? The Web can help you answer these questions.
- Think about your child’s age and maturity level when you're trying to decide how much to say about HIV/AIDS. Some of the recommended Web sites break down HIV/AIDS into age-appropriate levels designed to increase understanding without creating unnecessary fear of the disease.
- Web sites that focus on talking to children about a variety of issues are helpful in discussing HIV/AIDS, but a health-oriented Web site will have the most complete medical information about HIV/AIDS to present to your child.
The University of Missouri Extension
also breaks down HIV/AIDS into several levels of understanding, with specific notes about high-risk behavior and safe behavior concerning the virus. Tips are given for discussing HIV/AIDS with children ages 5–18.
Talking With Kids About Tough Issues
helps you break down sex, drug use, and HIV/AIDS into varying degrees of information so that you can adjust a conversation with your child to an age-appropriate level, and also provides some role-playing activities. One useful piece of information on this Web site is a brief section about how to initiate a discussion of HIV/AIDS with your child. Booklets about HIV/AIDS and other tough issues
are available for download from the site in English and Spanish.
The National Pediatric AIDS Network
covers many aspects of children with HIV or AIDS, including how to them that they have the virus, therapy options, and camps for HIV positive children and their family members. One very useful aspect of this site is the “Just Diagnosed” section, which offers a guide to what literature you should read at various stages of dealing with HIV/AIDS, including Opportunistic Infections, and Anti-HIV Therapy Strategies. You can also read stories from others either living with or affected by HIV.
People living with HIV/AIDS still encounter discrimination today: in the workplace, in healthcare institutions, from insurance agencies, and from society in general. Know your rights and find support groups to help you if you are a victim of discrimination, or help prepare your workplace to accommodate employees with HIV/AIDS.
- High medical costs and an inability to maintain employment due to illness can place particular strain on a person with HIV when it comes to keeping housing, or obtaining and maintaining insurance. Government Web sites (which have a “.gov” at the end of the Web address) or housing coalition Web sites can tell you what resources are available if you are experiencing housing and insurance problems.
- If you’re an employer or a person with HIV who wants to make sure your office is compliant with established policies and practices, government Web sites are another good bet to find the latest information on workplace standards.
For information about HIV/AIDS in the workplace …
The Americans with Disabilities Act (ADA)
page of the U.S. Department of Justice
Web site provides a comprehensive review of the ADA. Contact information to speak with an ADA specialist is available by clicking the “ADA Information Line” link. Businesses can access information about the Act by clicking the “ADA Business Connection” link.
BRTA/LRTA (Business Responds to AIDS/Labor Responds to AIDS)
provides tools for managers to implement HIV/AIDS awareness programs in their workplaces. Download the “Labor Leader’s Kit” to access all the resources you need to create a comprehensive HIV/AIDS workplace program. The site downloads are in PDF format.
To deal with matters of discrimination …
Human Rights Watch
discusses human rights violations in the treatment of women with HIV/AIDS. The link at the bottom of the page, “Human Rights Watch Work on Women and HIV/AIDS,” provides some news stories about HIV/AIDS work with women, but some of the stories are not current, or focus more on sexual abuse and reproductive health than on HIV/AIDS.
The National Women's Health Information Center
bills itself as the “Federal Government Source for Women’s Health Information.” Links to work force information, health insurance rights, and other federal and non-government information sources for those living with HIV/AIDS are offered here.
If you have questions about insurance coverage, medical privacy, and other benefits …
Social Security For People Living With HIV/AIDS
explains that if you have HIV/AIDS and are unable to work, you may qualify for disability benefits. The various benefits are explained along with how to file for benefits, and speed up your claim. A link is also provided to apply for benefits online.
Access to Health Insurance/Resources for Care (AHIRC)
provides a database of health care insurance options for the self-employed, low-income workers, the under-insured, and the uninsured who require medical care. By clicking on a map of the U.S., you can look at options in all 50 states and the District of Columbia.
America’s Health Insurance Plans
contains articles relevant to those with HIV and AIDS. If you click on the “Issues and Advocacy” link and then “Our Issues,” you can access subjects such as “Confidentiality of Medical Records,” “Coverage Mandates,” “Medicaid,” and “Rising Health Care Costs.” This site is very easy to navigate.
If you are looking for housing …
The National AIDS Housing Coalition
supports legislative efforts and policy initiatives to help people with HIV/AIDS access safe, affordable housing. Learn about the HOPWA program
, which stands for “Housing Opportunities for Persons with AIDS.” Make sure to use the “Resources” option to find links to other organizations addressing HIV/AIDS and housing issues.
The AIDS Housing Corporation
facilitates the creation of safe, affordable housing for people living with HIV/AIDS in all six New England states. The AIDS Housing Corporation is the founder of the National AIDS Housing Coalition.
The U.S. Department of Housing and Urban Development (HUD)
provides more information about the difficulties related to housing situations for HIV/AIDS patients. The “Statewide HIV/AIDS Housing Information” link under Local Resources takes you to a useful map where you can click on a particular state and find HOPWA grant resources on a state-by-state basis.
HIV/AIDS affects people in a multitude of ways; perhaps you’ve lost someone to the illness, or you’ve recently been diagnosed with HIV, or are simply trying to live a happy, successful life. Regardless of your circumstances, you will be able to find someone to share your feelings with about HIV/AIDS. The Web offers great online communities and the opportunity to find local support groups in your own community.
- Some of the Web sites mentioned in this guide, including AEGIS, The Body, AIDSmeds.com, and the National Pediatric AIDS Network have message boards, forums, or personal stories from people affected by or living with HIV/AIDS.
- If you prefer talking with someone face to face rather than on the Web, try typing “HIV support groups” and your city name in a search engine to find support meetings in your area.
AIDS/HIV Support Groups
has a list of general support hotlines for people living with HIV/AIDS. Contact numbers are provided for organizations at a national and state level.
has more than 150 message boards with subjects related to a variety of diseases and health topics. Select a category in the “Message Boards” box and then click “Jump to Board.” To participate in the message boards, you must first register for a free account.
has free chat rooms for heterosexuals with HIV/AIDS, transsexuals with HIV/AIDS, HIV-positive parents, and more.
The Centers for Disease Control and Prevention
address HIV issues in the criminal justice system. Learn about topics such as “Drug Use, HIV, and The Criminal Justice System,” “HIV/AIDS Counseling and Testing in the Criminal Justice System,” and “Providing Services to Inmates Living with HIV.” This site is straightforward in its presentation and most of the articles are available in PDF format.
The United States Department of Veterans Affairs
provides tailored information for HIV/AIDS patients and the public, as well as for health care providers. A specific advantage to this site is the “Daily news updates” section which offers recent news items about HIV/AIDS developments. The gap between some dates does indicate that the updates aren’t exactly daily, but they will be current within a few days.
has a personals page for people living with HIV/AIDS and looking for companionship, whether it’s just someone to talk to or a romantic relationship (just try to look past the ads). To reach the Personals page, click on the “POZ AIDS Services Directory” link. A more detailed explanation of the NAPWA site is available in the AIDS Awareness section of this guide.
If you have HIV or are concerned about how you can get HIV, the Internet can be a great place to answer your questions as long as you are careful about the types of information you read. Not all sites have good information, but we’ll help you sort out what you can use.
- Some questions are embarrassing to ask in person. The Web can be a great place to ask your health-related questions privately and, often, anonymously.
- It’s important to make sure that the information you read about health issues is accurate. The sites listed here are all trustworthy but there are many more sites out there: some are reliable, some are biased, and some are just plain wrong. Check out the findingDulcinea Health Web Guide for a section on figuring out whether you can trust a particular site. One tip: government (usually indicated with a “.gov” at the end of the Web address) and nonprofit (“.org”) organizations will usually have credible information.
The Adolescent AIDS Program
lists states around the U.S. with HIV testing and counseling centers that have adolescent-friendly services. Read “The Deal,” a teen lifestyle ’zine about love and HIV/AIDS, or look through the “HIV and U” section to get some advice on questions you might have about sex.
has a lot of information that you can access in multiple ways. To look at a list of topics, just click on the “Health Topics” link at the left of the page. A section on child and teen health
is located under demographic groups. Type “HIV” in the search box and you’ll come to a page with several HIV/AIDS-related topics. The titles of the topics are fairly clear, so you should be able to make a reasonable guess as to whether a specific page of information contains the answers or content you are looking for.
is a fun-looking Web site with the serious information you need to know about your health. In addition to information about HIV/AIDS, the site has sections related to subjects such as learning disorders, cancer, and allergies. The articles also have a “date reviewed” note at the bottom, which will let you know how recent the information is. Simply enter HIV in the search box on the homepage to find a list of relevant articles.
is similar to other “Question and Answer” Web sites out there, but with one particular advantage being the “Crisis Call” option. “Crisis Call” provides you with phone numbers you can call for special needs such as AIDS, abuse, and eating disorders.
discusses the basics of HIV/AIDS, how you can get the disease, and what you should know about protecting yourself. Sections are available on male and female health, and include a variety of topics in addition to HIV/AIDS.
discusses the biological aspects of sexual intercourse and also has information about sexually transmitted diseases such as AIDS. If you’ve got a specific question about your body, see if the answer has already been posted in the “Girls’ Health” or “Guys’ Health” sections.
HIV/AIDS is a global disease that affects millions of people and brings to light an array of educational, human rights, and public safety considerations. The Web can take you to information with a specific regional focus, but also to sites with a statistical and global focus.
- For international HIV/AIDS research, much of what you find will likely focus on HIV/AIDS in Africa. If you are looking for information pertaining to other regions, try typing “HIV” or “AIDS” and the specific location you are researching into your favorite search engine.
- Many sites focusing on HIV/AIDS at an international level focus on a particular cause such as human rights or awareness issues, but there are also sites with a statistical focus.
The World Health Organization
is the health authority for the United Nations. This Web site lists member countries and addresses a variety of health issues. To reach the HIV/AIDS page or to search for other health topics, click on the “Health topics” link on the left side of the page. Read through the “Related Topics” section, which focuses on Immunization and HIV/AIDS, Nutrition and HIV/AIDS, as well as oral health and HIV/AIDS. The “Publications” section breaks down ideas such as advocacy, AIDS policies, and monitoring and evaluation by categories and by topics. For statistical information, the Epidemiological Fact Sheets in the UNAIDS/WHO Global HIV/AIDS Online Database are easier to use than the Data Query option. The “Related Topics,” “Publications,” and statistical information are all accessible from the “HIV infections” page.
was created by 10 United Nations system organizations. The “Regions” tab has in-depth statistical information about specific regions of the world with respect to HIV. The “Issues” section is also a great feature, with HIV-related topics divided into four categories: Prevention, treatment, and care; Affected communities; Research; and The impact of HIV.
The World Bank
discusses the cases of HIV/AIDS in Eastern Europe and Central Asia. Learn about the economic costs of HIV in these regions, the potential for the virus to spread, and where the World Bank has issued grants in order to combat the spread of HIV/AIDS.
covers several aspects of HIV/AIDS in southern Africa. Choose from an array of topics including education, policy updates, and health and research to learn about HIV/AIDS in southern Africa. If you prefer to customize the look of this page for your own needs, a free registration will enable you to do this. The registration also signs you up for e-newsletters.
The International Crisis Group
is dedicated to preventing worldwide conflict. This Web site reviews HIV/AIDS policies in countries such as Myanmar, Uganda, and Russia, as well as the security threats posed by HIV/AIDS. While the site provides a picture of the HIV/AIDS situation in several countries, some of the articles are at least two years old or older.
The Global Network of People Living with HIV/AIDS (GNP+)
is the only worldwide network that represents all people with HIV/AIDS and takes an active role in advocating for the rights of people with HIV and AIDS. Members inform governments about weaknesses in HIV/AIDS programs and work to end human rights violations. Make sure to check the library section of this site to review information about donating medicine, international HIV/AIDS agreements, and indicators to consider the intensity of stigma and discrimination.
stands for “President’s Emergency Plan for AIDS Relief.” The site is nothing fancy but does provide a good review of President George W. Bush’s plan to engage countries around the world in combating the spread of HIV/AIDS. The site discusses plans for pediatric AIDS treatment, international partners in the fight against HIV/AIDS, and HIV/AIDS technology, and also has a list of related Web sites you might find useful.
Save the Children
recognizes children as some of the most defenseless victims of AIDS in developing countries. Study both the myths and realities of children and HIV/AIDS, learn about Save the Children’s HIV/AIDS programs, and the global spread of HIV/AIDS.
There is a general agreement that AIDS education and awareness are some of the best ways to prevent the spread of this disease. A variety of programs are available for individual and group involvement in AIDS awareness activities.
- If you are part of a group or community with specific needs regarding AIDS awareness, try using a more general Web site such as NAPWA.org or Projinf.org to find links to other Web sites that address your particular needs.
is the homepage for the National Association of People with AIDS. This page contains plenty of helpful hints for hosting a National HIV Testing Day event in your home town. Donate to NAPWA, check a calendar of upcoming events, or use a very comprehensive services directory to find the services you are looking for related to HIV/AIDS.
is a popular Web site used by hundreds of HIV/AIDS and health information Web sites. Project Inform works to teach people about treatment and monitoring of HIV, advocate research, and educate people living with HIV on how to make informed healthcare decisions. Make sure to take a look at the options to the right of the page, such as “Resources for Medicare Part D,” and “Breaking News: HIV Treatment Info.”
National Black HIV/AIDS Awareness Day (NBHAAD)
discusses the particularly high risks African Americans face with HIV/AIDS, and offers tools and ideas for hosting a National Black HIV/AIDS Awareness Day event in your area. A simple registration process will sign you up for e-mail updates from NBHAAD on the subjects of your choosing.
targets young people, because half of all new HIV infections worldwide occur in people younger than 25. Spokesmodels with HIV and AIDS are invited from around the world to offer statements about getting educated, tested, living with the disease, and knowing about their HIV status. This site has a very modern look.
supplies information about participating in HIV/AIDS awareness projects overseas, and work with HIV/AIDS patients. For more information about a specific program, or to apply to a program, the “More Info” and “Apply Now” links are on the navigation bar at the top of the page.
The Kaiser Family Foundation
focuses on major health issues in the United States and is assuming a larger role in global health matters. The site also has links to the Global Media AIDS Initiative and state-by-state AIDS facts.
Log Cabin Republicans
is an organization supporting fair treatment of gay and lesbian Americans. You’ll find information here on the history of HIV/AIDS, information on early treatment options, a perspective on the global AIDS crisis, and more.
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