Selected National Resources
The following is a list of national resources, selected because they are good sources of information, whether in print, by phone, or online. These organizations sometimes change their telephone numbers.
If you call and get a message that the number is not in service, try directory assistance. For 800 numbers, the directory assistance number is 1-800555-1212. These organizations also change their Web sites. If you get an error message, try an Internet search with, say, Google, on the organization’s name. The Web sites can be difficult to navigate. Try clicking on About Us, or Contact Us, or Site Map.AIDS Clinical Trials Groups (ACTGs). These are the medical centers (discussed in chapter 8) that are part of a national program of the National Institute of Allergy and Infectious Diseases (NIAID) to test new treatments for HIV infection and all its complications. ACTGs need people to participate in these clinical trials. ACTGs are also superb sources of information about treatment. They also have information specific to HIV-infected women and children. The list of ACTGs changes with time, so the best way to find the ACTG nearest you is online at www.aactg.org/, though this Web site makes information difficult to find. A better site is http://aidsinfo.nih.gov/ clinical_trials/. Or call 1-800-448-0440, TTY 1-888-480-3739, Monday to Friday, 12 noon to 5 p.m., Eastern Standard Time. Or email ContactUs@aidsinfo.nih.gov. Or write to AIDSinfo, P.O. Box 6303, Rockville, Md. 20849-6303. For real-time, online help Monday to Friday, 12 noon to 4 p.m. Eastern Standard Time, go to http://aidsinfo.nih.gov/live_help/. All information, whether online or by phone, is available in Spanish as well as English.
AIDS Treatment News, 1233 Locust Street, 5th floor, Philadelphia, Pa. 19107, 1-800-873-2812. This is a free online newsletter on the latest HIV infection treatments, traditional and alternative, plus related legal and policy news.
The newsletter is also available in print form, but for a negotiable subscription price. Web site: www.aids news.org/.American Foundation for AIDS Research (amfAR), 120 Wall Street, 13th Floor, New York, N.Y. 10005. Phone: 1-212-806-1600 or 1- 800-39AMFAR. Fax: 1-212-806-1601. AmfAR funds basic biomedical and clinical research, efforts in prevention and education, and the development of AIDS-related public policy. In addition, it publishes print news about treatments, prevention, and policies. To subscribe, write to Public Information at amfAR’s address or e-mail publications@amfar.org. Web site: www.amfar.org.
CDC National Prevention Information Network, 1-800-458-5231 (Monday-Friday, 9 a.m. to 6 p.m., Eastern Standard Time), or www.cdcnpin.org. This is a resource for both print and electronic materials, run by the Centers for Disease Control and Prevention, offering information on HIV infection, prevention, treatment, medical care, and local organizations. All information is also available in Spanish. To find current information about organizations, or to talk to a Health Information Specialist, call 1-800-458-5231, TTY 1-800243-7012, Monday through Friday, 9 a.m. to 6 p.m., Eastern Standard Time. Or e-mail info@cdcnpin.org. Or write CDC NPIN, P.O. Box 6003, Rockville, Md. 20849-6003. Or talk online with an NPIN Information Specialist, www.cdcnpin.org, Monday through Friday, 2 p.m. to 4 p.m., Eastern Standard Time.
Gay Men’s Health Crisis (GMHC), 119 W. 24th Street, New York, N.Y. 10011, 1-212-367-1000. GMHC publishes Treatment Issues, a monthly newsletter on HIV therapies; also available free online. GMHC also publishes a number of booklets on specific safer sex practices. GMHC has a hotline for AIDS information and for peer counseling: 1-212-807-6655 or 1-800-AIDS-NYC. The Web site, also available in Spanish, is www.gmhc.org.
National Association of People with AIDS (NAPWA), 8401 Colesville Road, Suite 750, Silver Spring, Md. 20910, 1-240-247-0880, info@napwa.org.
A national AIDS-advocacy organization, with advice on education in treatment and prevention, on organizing community-based support services, and on policy issues. Publishes guides to dealing with managed care, Medicare/Medicaid, and health insurance, and offers an online newsletter. Web site: www.napwa.org.National Institute of Allergy and Infectious Diseases (NIAID), a branch of the National Institutes of Health in the U.S. government’s Department of Health and Human Services. NIAID is the source of the latest federally approved information about HIV/AIDS. It has an excellent Web site on HIV/AIDS that provides information on drugs, guidelines for treatment, preventive and therapeutic vaccines, clinical trials, and general information at http://aidsinfo.nih.gov/. It also offers real-time online help, Monday to Friday, 12 noon to 4 p.m., Eastern Standard Time, at http://aidsinfo.nih.gov/live_help/. Or call 1-800-448-0440, TTY 1-888-480-3739, Monday to Friday, 12 noon to 5 p.m., Eastern Standard Time. Or e-mail ContactUs @aidsinfo.nih.gov. Or write to AIDSinfo, P.O. Box 6303, Rockville, Md. 20849-6303. All information, whether online or by phone, is available in both Spanish and English.
The National Institute on Drug Abuse is another branch of the government’s National Institutes of Health. Its Web site has information on preventing and treating drug or alcohol abuse in people with HIV infection: http://hiv.drugabuse.gov/. For your local resources on general HIV/AIDS information or on HIV testing, call the National AIDS Hotline at 1-800-342-2437; or in Spanish, 1-800-3447432; or TTY 1-800-243-7889. Or call the National Prevention Information Network at 1-800-458-5231. Or write P.O. Box 6003, Rockville, Md. 20849-6003.
National STD and AIDS Hotline, 1-800-342-AIDS (1-800-3422437). This is a 24-hour-a-day, 7-day-a-week hotline, contracted through the Centers for Disease Control and Prevention. Ask them questions about types of services, about general information, and about what services are available in your local area.
For Spanishspeaking callers, the number is 1-800-344-SIDA (1-800-344-7432). The TTY number is 1-800-243-7889.Pharmaceutical Research and Manufacturers of America (PhRMA), Communications Division, Suite 900, 1100 15th Street, N.W., Washington, D.C. 20005, 1-202-835-3400. It publishes New Medicines in Development for AIDS, a chart of drugs, diagnostic tests, and vaccines available online at www.phrma.org/newmedicines/aids/. Project Inform: National hotline with information about treatment for HIV and AIDS. Its Web site provides information about AIDS policy and advocacy. Call 1-800-822-7422 (treatment hotline) Monday-Friday, 9 a.m. to 4 p.m., and on Tuesdays until 7 p.m., Pacific Standard Time. Web site: www.projectinform.org.
San Francisco AIDS Foundation, P.O. Box 426182, San Francisco, Calif. 94142-6182, or One Sixth Street, San Francisco, Calif. 94103; main number: 1-415-487-3000. It publishes BETA, Bulletin of Experimental Treatments for AIDS, a newsletter about experimental treatments of HIV infection, updated quarterly; no subscription price, but a donation is requested. The Foundation’s AIDS information hotline is 1-415-863-AIDS. The Web site has some issues of BETA online at http://sfaf.org/beta/, and good links to other sites: www.sfaf.org.
Other Resources on the Internet
The Internet is a highly varied junk shop. The best sites are extraordinarily helpful, offer up-to-date and accurate information from respected sources, and are linked to a variety of other, sometimes more specific, sites. The worst sites offer speculation as though it were fact. No one assures the quality of any site on the Internet, so, as always, let the buyer beware.
Besides the sites listed in the section above, the following are sites of general interest that we know to be good. Other sites that we don’t yet know about might be just as good. See also the Web sites of the other resources cited here.
AIDS.org: The Web site of the publishers of Treatment News, it provides extensive information, including basic information, frequently asked questions, treatment recommendations, public policy issues, relevant news items, community issues, and summaries of medical conferences.
www.aids.org.The Body: Aimed at people affected by HIV infection. A searchable site, covering treatments, HIV/AIDS news, prevention, lists of local resources, quality-of-life issues, policy issues, professional meetings, lists of hotlines, many links to other sites. Information is in the form of articles, mostly taken from the newsletters of community-based organizations. www.thebody.com.
HIVInSite, University of California, San Francisco, Center for AIDS Prevention Studies: Aimed at caregivers but readable by anyone. A searchable site, covering treatment, prevention, research, statistics, trials, drugs, professional meetings, policy, and legislation. http:// hivinsite.ucsf.edu.
Johns Hopkins AIDS Service: Aimed at caregivers but readable by anyone. A searchable site covering medical management, treatment guide, research, epidemiology, trials, and case conferences with freely downloadable publications, a question-and-answer section that allows you to ask questions, and archives of previous answers. www.hopkins-aids.edu.
National Center for HIV, STD, and TB Prevention; CDC Division of HIV/AIDS Prevention: An official government Web site with extensive data on HIV/AIDS statistics, guidelines for management, federal funding, frequently asked questions, prevention, HIV testing, publications, and fact sheets for consumers. www.cdc.gov/hiv/.
National Library of Medicine, another branch of the National Institutes of Health: The world’s largest medical library, containing research articles, encyclopedias, dictionaries, drug information, and directories. The Web site includes PubMed, public access to biomedical research, at www.ncbi.nlm.nih.gov/ and click on “PubMed Central.” The Web site also includes Medline Plus, an all-purpose site on HIV/AIDS news and information that can also be reached separately at http://medlineplus.gov or www.nlm.nih.gov/medline plus/aids.html.
Finding Local Services
These organizations sometimes change their telephone numbers.
If you call and get a message that the number is not in service, try directory assistance. For 800 numbers, the directory assistance number is 1-800555-1212.To find the services nearest to you, call or write:
Your state, county, or city health department. Find their phone numbers in the blue government pages of the phone book under Health. Departments of health offer varying services but usually know what’s available locally, including local and state hotline numbers; all state health departments have AIDS education departments.
National STD and AIDS Hotline, 1-800-342-AIDS. This is a 24- hour-a-day, 7-day-a-week hotline, contracted through the Centers for Disease Control and Prevention. For Spanish-speaking callers, the number is 1-800-344-SIDA. The TTY number is 1-800-2437889. Even though it is a national hotline, they have information on the services available in your local area, including local and state hotline numbers.
Local and state hotlines. They know local resources; to find hotline numbers, call the National AIDS Hotline or look up AIDS in the index to your phone book’s yellow pages, or look up Health in the blue government pages of the phone book.
Your physician should also know about local resources; so should a social worker.