Resources: Great Hotlines, Organizations and Web Sites
The more you learn about HIV and its treatment, the more you'll understand. Someone, somewhere, will explain something in a new way, and it will click. Getting information can be crucial -- doctors don't always have time to update their knowledge or they may forget to raise an issue that can help you. Even HIV specialists disagree among themselves. Learning about treatment and other issues helps you figure out what you think is important. Remember, inch by inch, it's a cinch. Also, a medical dictionary comes in handy -- paperbacks run about $7, and you can get a booklet of HIV terms from AIDSInfo (see below). One last point: in the age of the Internet, some of the organizations here can be reached only through the Net. Contact the CDC Hotline for HIV service organizations located near you.
AIDSInfoRun by the U.S. Department of Health and Human Services (DHHS). Central resource for HIV treatment guidelines. You can also track down clinical trials. Call 1-800-HIV-0440 (448-0440). Write AIDSinfo, P.O. Box 6303, Rockville, MD 20849-6303. (You can write "Guidelines" instead of AIDSInfo.) Visit www.aidsinfo.nih.gov.
AIDS Treatment Data Network (ATDN)The New York City organization offers treatment information and counseling in Spanish and English. Call their national hotline at 1-800-734-7104.
CDC (Centers for Disease Control and Prevention)National AIDS Hotline: 1-800-342-AIDS (342-2437). For Spanish call 1-800-344-SIDA (344-7432). Open 24 hours a day, seven days a week. The center also offers an e-mail list. Under President Bush, the CDC has sacrificed science to morality, so be careful about CDC advice. (No matter what they're forced to tell you, remember that condoms are a good thing.) Visit www.cdc.gov.
Gay Men's Health CrisisThe New York City agency offers peer counseling and support at 1-800-AIDS-NYC (243-7692). Write GMHC, The Tisch Building, 119 West 24th Street, New York, NY 10011. Visit www.gmhc.org.
Medical ProvidersThe Warmline of the National HIV/AIDS Clinicians' Consultation Center (NCCC) is at 1-800-933-3413, 6 a.m. - 5 p.m. Pacific Time.
The PEPline for occupational exposure is 1-888-HIV-4911 (448-4911), 24 hours a day, seven days a week. It's operated by the University of California, San Francisco. Visit www.ucsf.edu/hivcntr.
PrisonersThe activist group HIV/Hepatitis C in Prison Committee (HIP) is at California Prison Focus, 2940 16th St., #B-5, San Francisco, CA 94103. Visit www.prisons.org/hivin.htm. The Osborne Association's AIDS in Prison Project sends out health information. Write 809 Westchester Ave., Bronx, NY 10455. Prisoners can call the APP hotline collect on Tuesday, Wednesday and Thursday from 2:30 - 8 p.m. Eastern Time, but must first be added to their institute's telephone list; 1-718-378-7022.
Project InformThe agency's National HIV/AIDS Treatment Hotline is 1-800-822-7422. The hotline also mails out treatment information packets. International calls or those from the San Francisco area can be made to 1-415-558-9051. Write to Project Inform, 205 13th Street, #2001, San Francisco, CA 94103. Visit www.projectinform.org.
RAP-IT-UPThe national HIV awareness campaign of BET (Black Entertainment Television). Call toll free for the HIV testing site closest to you, 1-866-RAP-IT-UP (727-4887). The campaign includes presentations at high schools and celebrity appearances. Visit www.RAP-IT-UP.com.
WomenThe Sister Connect national warmline is operated by the New Jersey Women and AIDS Network. Includes referrals for pregnancy care and birth control services. Call 1-800-747-1108. The Sisterhood Mobilized for AIDS/HIV Research and Treatment (SMART) provides treatment and prevention education. Write to PMB #117, 217 E. 85th Street, NY, NY 10028. Call (917) 593-8797. Visit www.smartuniversity.org. HIV-positive women operate the hotline of Women Alive, 1-800-554-4876. Calls can be taken in English and Spanish. Write them at 1566 Burnside Ave., Los Angeles, CA 90019. Visit www.women-alive.org.
The InternetThe information at Medscape.com and Clinicalcareoptions.com is written by and for health care providers, but you'll get comprehensive information. From Great Britain, AIDSmap.com gets you tons of information on both treatment and plain ole living with HIV, but the treatment information can be pretty dry. They tend not to translate the information they get from conferences or medical journals, or explain what it means.
You can get truly simple-to-understand information on everything HIV from AIDSinfonet.org. They list everything in a one or two-page flyer. Tons of great articles are available at http://hivinsite.ucsf.edu (that's the correct address -- no www.) The Adult AIDS Clinical Trials Group (AACTG) also has no www in their address: visit http://aactg.org for lots of basic information and a list of their studies.
Another outstanding Web site is AIDSmeds.com, founded by a person living with HIV. One of the best features of this site is that you can click on a word to get a definition for it. You can also use a program that allows you to track your meds. It's in Spanish too. TheBody.com offers articles along with question-and-answers from medical providers, including psychologists. Many of the articles are the stories of people living with HIV. FreeHIVinfo.com will send you beautiful, easy-to-understand brochures. I especially liked "The Long and Short of It: Side effects and the search for HIV treatment that fits the individual."
Signing up for daily e-mails from AEGIS.com and kaisernetwork.org brings you articles from around the world on everything from treatment to discrimination to politics. Writer and advocate Jim Pickett also posts outstanding articles related to HIV and gay rights, along with his witty comments. Plus, you get information on signing petitions and contacting government representatives. Drop him an e-mail: JimberlyPickett@aol.com. The Well Project, an initiative by and for women with HIV, has a comprehensive Web site: TheWellProject.com.
For everything related to HIV medications and other products, go to the U.S. Food and Drug Administration, the government agency that regulates treatment of the virus. To join the list, go to http://list.nih.gov/archives/fda-hiv-aids.html.
For activism, see the AIDS Treatment Activists Coalition (ATAC), formed by HIV treatment advocates and activists from around the country. For now, people can only join the group through e-mail, where most of ATAC's work is conducted. ATAC is always looking for more women and people of color. Sign up! You don't have to get involved right away, but can stay up-to-date with the issues. Visit atac-usa.org. There's more activism at CHAMP, the Community HIV/AIDS Mobilization Project. CHAMP helps train organizers for action and advocacy. Prison issues are a primary concern. Write them at 594 Broadway, Suite 700, New York, New York 10012. Call 1-212-966-0466 ext. 1226. Visit www.champnetwork.org.
To join the e-mail list of POWER, the Program for Wellness Restoration , send a blank email to PozHealthfirstname.lastname@example.org. Founder and list moderator Nelson Vergel is passionate about his work and provides an amazing source of information (plus he's very nice). Visit powerusa.org, and take note of the organization's facialwasting.org Web site. It has everything you want to know about this troubling condition.
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