HIV Treatment Information Resources
Organizations, Newsletters, Web Sites and Hotlines
The following list includes treatment organizations, Web sites and hotlines that we trust and have found useful in our work at ACRIA. Our brief descriptions try to give you an idea of the information available on each site but aren't intended to be complete. Each entry includes the name of the organization or Web site (often both); the treatment newsletter published (in italics), if any; the Web site address where applicable; and addresses and phone numbers for organizations that are willing to mail materials if you call or write them. Some agencies have hotlines that provide counseling and referrals to other services. Email addresses are provided for international sites and for many of the sites without other contact information. We've focused on sources that provide treatment information about HIV, viral hepatitis, topics of specific relevance to women and access issues. We apologize in advance to those organizations that we've invariably missed -- space is a consideration, of course, but we may have simply overlooked a useful national treatment organization or Web site. We welcome your feedback -- if you find that a listed resource contains inaccurate or outdated information, please let us know. Similarly, we welcome suggestions of additional HIV treatment resources to add to the list. Please email your suggestions to firstname.lastname@example.org.
AEGIS (AIDS Education General Information System)
A huge Web site with dozens of valuable features including: headlines that are updated weekly, sometimes hourly, from international media that link to abbreviated or full articles about HIV-related topics (not only treatment); links to law libraries, news services, community treatment newsletters, peer-reviewed journal abstracts, conference abstracts, many other references; and much more. Great archival material that helps put the epidemic in historical context.
AIDS Action Baltimore
Archived articles from AIDS Action Bulletin going back to 2002; information about Out Front, a peer-led HIV prevention program for young gay and bisexual men in Baltimore. The annual report and newsletter are available by calling or writing.
Community research and education organization. Site includes issues of ACRIA Update, quarterly treatment newsletter, going back to 1997; Understanding Your Lab Results, Managing Drug Side Effects, Clinical Trials Explained, Treatment Issues for Women, and Viral Hepatitis and HIV (English & Spanish); all available in both PDF and HTML; publications and newsletter are available for free to people with HIV and community-based organizations by calling, writing, or completing online order form. The site includes TrialSearch@acria.org, a growing, searchable database of enrolling HIV-related trials throughout the United States.
AIDS Survival Project
Site includes a listserve for announcements and their newsletter, Survival News. Call, email, or snail mail them for information and they'll send you as much as they can track down. They have an extensive treatment resource library in their Atlanta center, hold seminars for newly diagnosed people or those who want treatment information from the bottom up.
AIDS Treatment Activists Coalition
National coalition of AIDS treatment activists working together to end the AIDS epidemic by advancing research on HIV/AIDS. Site includes materials relating to current advocacy issues and a new newsletter describing the coalition's activities. Allows people to register for inclusion in email discussions and gives people the opportunity to get involved in activist discussion and action.
Fact sheets about available antiretroviral medications, opportunistic infections, HIV treatment issues in plain English and in Spanish. Write or call for copies of fact sheets. Parts of the Web site are devoted to information about HIV/HCV coinfection. The Network also provides case management as well as referrals over the phone, although it is not a counseling hotline. The Access Project collects and distributes information about medications and other resources available through Medicaid, AIDS Drug Assistance Programs (ADAPs) and industry-sponsored patient assistance programs. Contact The Access Project by calling The Network or sending an email to TheAccessProject@aol.com.
AIDS Treatment News
Searchable archive of invaluable bimonthly treatment newsletter, published since 1986. Call or write to subscribe via email or hard copy. The archives provide a fascinating history of the treatment concerns and advocacy of the HIV community over the years.
Searchable database of 1,200 organizations that provide HIV/AIDS & STD services in California; cooperative effort of the San Francisco AIDS Foundation, San Francisco Department of Pubic Health and California Department of Health Services; excellent Frequently Asked Questions about HIV, STDs, Hepatitis, Crystal Meth and more.
A Web site of the U.S. Department of Health and Human Services; contains current and archived guidelines, including those for the use of antiretroviral agents in adults, pediatrics and to prevent mother-to-child transmission; a glossary of terms; fact sheets and information relating to the guidelines, medications, vaccines and clinical trials. Call or write for more information.
Comprehensive Web site providing detailed information about all aspects of HIV, the immune system, current and investigational antiretrovirals, opportunistic infections, prevention and much more. Includes the latest news, links to organizations around the world and various publications. One of the best!
Treatment information, news and question & answer forums. The site enables you to check drug-drug and drug-food interactions. There's also a tool to graph your lab results. The site also includes basic information for people who are newly diagnosed.
Alternative Medicine Homepage
Definitions of various alternative therapies; links to lists of complementary and alternative medicine (CAM) providers and related databases and Web sites.
Articles about various HIV-related issues, including treatment, often with a global focus. Click on the amfAR Global Link on the left of the screen to access Treatment Insider in English, French, Spanish, or Chinese as well as a lot of other useful information. The HIV/AIDS Global Link can be ordered online and is free to the HIV/AIDS community. This site has lots of valuable content but is somewhat difficult to navigate. Write or call for hard copies of amfAR publications.
Brochures and information about liver disease available online (hard copies can be ordered for a fee); contact information for local chapters nationally; and a list of national and local clinical trials relating to liver disease. Call to get information about liver problems and for referrals.
Free registration allows full text access to JAMA's research articles, review articles, special communications and editorials six months to five years after publication. More recent issues require a subscription.
Information about sexually transmitted diseases, fact sheets, a sexual health glossary and illustrated instructions about how to properly use female and male condoms. Call or write and ASHA will try to send you information, although it's primarily Web-based. Clear and helpful site map.
The Antiretroviral Pregnancy Registry
A voluntary, observational study designed to collect and evaluate information on the outcomes of pregnancy exposures to antiretroviral medications. Women are enrolled through their healthcare providers only. Healthcare providers may call or write for further information.
Asian & Pacific Islander Coalition on HIV/AIDS (APICHA)
New York-based AIDS service organization dealing with health issues in the Asian & Pacific Islander population. Navigator is an excellent guide covering treatment issues, benefits and other topics pertinent to people living with HIV -- available in Bengali, Chinese, English, Hindi, Japanese, Korean, Thai and Vietnamese. Copy the order form on the Web site and fill it out -- the first copy is free. Call the Infoline for information and copies of APICHA publications. Requests for materials may also be made by mail.
Association of Nurses in AIDS Care (ANAC)
Primarily meant for nurses and other healthcare professionals, the site includes PDF versions of ANAC's quarterly newsletter, which is also for lay people, HIV + Nurse, as well as other treatment and symptom management information. Call or write for copies of HIV + Nurse.
Association of Nutrition Services Agencies (ANSA)
Helpful fact sheets on nutrition as it relates to various HIV medications, drug side effects and HIV disease. PDF version of Nutrition Guidelines for Agencies Providing Food to People Living with HIV Disease is available to view and download.
International AIDS charity based in England; includes PDF versions of booklets for young people and adults about HIV treatment, sexually transmitted diseases and other topics; information and statistics about the global epidemic; quizzes that can be useful as educational tools; a detailed history of the epidemic; and much more.
Site for women with HIV/AIDS; treatment information, personal stories, support groups, peer counseling; and issues of BABES Talking newsletter going back to 1998. Email, call, or write to receive copies of the newsletter.
Advocacy and information organization. Site includes information about current political actions, prevention oriented chat rooms and links. The Being Alive Newsletter is available online going back to 1996. You can also call or write to receive the newsletter.
Comprehensive site offering treatment information from a variety of sources, including community periodicals, conference coverage and recent news. Site also has forums to submit questions to the site's medical consultants on issues ranging from hepatitis C/HIV coinfection to lipodystrophy to nutrition and exercise.
Check out the women's section (profiles, articles and question & answer forum): www.thebody.com/features/women.
Organization primarily dedicated to support for PLWHAs, including groups and referrals; includes a link to The Body Web site for back issues of Body Positive magazine and SIDAahora; publishes an English/Spanish HIV/AIDS resource directory for the greater New York area. Call the HelpLine for referrals (mental health, drug treatment, testing sites), questions about transmission, safer sex and emotional support. The staff at Body Positive will also respond to letters.
Site includes low-literacy pamphlets on HIV/AIDS treatment-related issues that you can order or download as PDF files, policy and advocacy position papers, Living Positive manual, available by calling, writing or sending an email and bimonthly magazine, Living +, online and by subscription.
The British HIV Association
Canadian AIDS Treatment Information Exchange (CATIE)
Loads of treatment information in French & English, including news bulletins, TreatmentUpdate, CATIE's treatment newsletter, lots of other useful publications and HIV-related clinical trials enrolling in Canada. Send information requests to librarians using an online form or call with questions.
Site of the federally funded, non-profit, national organization created to facilitate HIV/AIDS clinical trial activity in Canada. Includes a database of CTN and non-CTN clinical trials enrolling in Canada as well as the results of past CTN trials.
The Canadian Women's Health Network
A comprehensive Web site about women's health issues, not HIV-specific; includes opportunity to subscribe to monthly electronic newsletter; PDF versions of Network newsletter; database of resources in Canada; lots of links to publications and information.
Treatment information and advocacy site that includes their treatment newsletter, RITA!, online (archived issues date back to 1999); it can be ordered by filling out an online order form or calling; clear, downloadable facts sheets including one about each available antiretroviral; and the opportunity to subscribe to a weekly treatment and research email newsletter.
Centers for Disease Control and Prevention (CDC)*
NPIN, the prevention arm of the CDC, includes: statistics; frequently asked questions; slide sets; many publications that are available to download and to order; access to Morbidity and Mortality Weekly Reports (MMWR) dating back to 1991; and the opportunity to receive information through email from a variety of CDC HIV/AIDS mailing lists. People at the hotline answer prevention questions about STDs, make referrals to local health departments and send out information that may be found on CDCNPIN Web site.
Centers for Disease Control and Prevention*
Basic information about hepatitis A, B, C, D & E; statistics; fact sheets; slide sets; little coinfection information; the National Hepatitis C Prevention Strategy (2001) in PDF and HTML; vaccination information available in many languages; most material is prevention-based, since the CDC is not a treatment agency.
Clinical Care Options
Detailed information about HIV, hepatitis B, hepatitis C and more; medical and research news, review articles, conference coverage; intended for healthcare providers; might be heavy going for some people with little background; registration required to access most of the site.
Searchable database of clinical trials for various diseases, including HIV, that are sponsored by the National Institutes of Health, other Federal agencies and the pharmaceutical industry; information about the clinical trial process.
Community Programs for Clinical Research on AIDS (CPCRA)
The CPCRA is a clinical trials program that conducts research through a national network of community-based sites; Web site includes results of completed CPCRA studies; CPCRA is currently enrolling patients for the SMART study, a large international study comparing two HIV treatment strategies -- one group starts antiretroviral therapy only when their CD4 counts reach 250 or less and the other will start or stay on therapy no matter what their CD4 counts (www.smart-trial.org).
Community Research Initiative of New England (CRI)
Site includes a terrific, full-color chart of antiretrovirals, including a printable PDF version -- great if you have access to a color printer; information about Massachusetts' HDAP (HIV Drug Assistance Program) and other drug access programs; descriptions of CRI's clinical trials enrolling. Call for information about clinical trials or Massachusetts' state ADAP (HDAP) or to talk to the education and outreach staff. Written requests for information will be fulfilled with a packet of information and/or a referral to another organization or research agency; CRI's work is exclusively in Massachusetts.
Critical Path AIDS Project
Department of Veterans Affairs -- National Hepatitis C Program
Useful, practical information about hepatitis A, B and C as well as links to more technical materials.
Non-profit buyer's club (operations currently suspended); the site is no longer being updated, but includes much historical information on alternative therapies; the HIV Treatment Info Pages still contain good backgrounders: detailed Treatment Information sheets on alternative therapies such as DHEA, glutathione, glycyrrhizin, NAC and silymarin (milk thistle); articles on Evaluating Therapies, Lipodystrophy, Food Safety, Neuropathy and other topics; and an extensive section on countering toxicities of antiretrovirals. As with most information on alternative therapies, much of what is presented is unproven speculation, but the site remains a good starting place for people making decisions about such treatments.
Comprehensive medical site with relatively detailed information about many diseases including HIV and viral hepatitis.
Site maintained by European treatment activists; features treatment news, links to articles, policy statements, opportunity to subscribe to monthly electronic newsletter or join EATG discussion list; information available in many languages.
Food and Drug Administration (FDA) HIV and AIDS Page
Site includes transcripts of Advisory Committee Meetings; FDA news releases; brand, generic and approval dates for each antiretroviral; a helpful FDA A-Z index; links to related sites; and the opportunity to sign up for email announcements about product approvals, significant label changes, safety warnings, notices of upcoming public meetings and more.
AIDS service and advocacy organization. Site includes information about GMHC's many services, current and archived issues of Treatment Issues going back to 2000, fact sheets and educational brochures available for sale. Call hotline for information about HIV/AIDS, testing, support and referrals for services.
Henry J. Kaiser Family Foundation
Site contains reports, information and fact sheets about national and international HIV/AIDS issues; substantial and very useful. Single copies of the policy-related fact sheets and surveys are available by calling.
Thorough, consistently updated information about viral hepatitis and coinfection; includes fact sheets (many in Spanish), articles, news updates, conference coverage, links to other viral hepatitis Web sites and PDF versions of The HCV Advocate newsletter dating back to 1999. Write to request materials by mail.
Hepatitis Foundation International (HFI)
Fact sheets, news updates, an online learning center, brochures and pamphlets (for sale); fact sheets are available in other languages by calling or emailing HFI. Call for information about support groups, resource materials and medical referrals, People seeking information about hepatitis can also write with questions.
Hepatitis Resource Network
Information about medications in development for the treatment of hepatitis C, clinical trials for hepatitis C and slide presentations about hepatitis B/HIV and hepatitis C/HIV coinfection.
Extensive list of medical journals, some of which include HIV-related study results, with information on when issues become available for free; includes links to each journal.
HIV & Hepatitis Education Prison Project
Contains text articles and PDF versions of HEPP Report, a monthly newsletter detailing treatment issues for inmates; the January 2004 issue includes a table of interactions between methadone and anti-HIV medications; archived issues available back to 1999. Hard copies of the newsletter aren't currently available, but you can call for information about HIV, viral hepatitis and statistics.
British site that includes thorough HIV treatment and conference reports; you can receive PDF versions of publications via email or by ordering them online; information is available in Spanish, French, Italian, Portuguese, Greek and Chinese.
HIV Drug Interactions
Detailed charts and articles about interactions between drugs/herbs and protease inhibitors and non-nucleosides (NNRTIs) as well as in interactive database that allows you to choose drugs to check about possible interactions; includes links to full relevant journal articles; site sponsored by the University of Liverpool.
Articles, conference reports and information focused on pharmacokinetics and drug interactions. Free registration required. This site does not work in Netscape.
Regularly updated Web site featuring HIV, hepatitis B, hepatitis C & coinfection treatment information, news reports & conference coverage, including the opportunity to submit questions to the site's medical consultants.
Comprehensive site includes vast amounts of treatment information and news, including sections devoted to policy issues; women and children; global issues; statistics; links; and the HIV InSite Knowledge Base, a detailed, online textbook about various aspects of HIV disease and its treatments from the University of California at San Francisco and San Francisco General Hospital.
Searchable guide to drug interactions; dosing schedules; pamphlets/fact sheets about individual anti-HIV medications; all information is available in English and French; some materials available in Spanish, too.
Infectious Diseases Society of America (IDSA)
Web site of healthcare professionals who specialize in infectious diseases; includes clinical practice guidelines for HIV and other illnesses; click on "Journals & Publications" to get IDSA News, abstracts from recent issues of Journal of Infectious Diseases and Clinical Infectious Diseases and free access to complete issues over a year old. Sign up, call, or send an email to receive HIVMA's periodic E-newsletter, HIV E-News, to keep informed of time-sensitive issues and HIV Quality Care News, a bimonthly newsletter for in depth coverage of HIV news by mail.
International Association of Physicians in AIDS Care (IAPAC)
Organization formed by physicians to educate healthcare providers about HIV/AIDS and to develop global educational and advocacy strategies to improve the quality of care provided to all people living with HIV/AIDS. Articles from Journal of IAPAC, quarterly, peer-reviewed journal, are available for free online, as are articles from past issues of IAPAC Monthly, the organization's monthly newsletter; monthly publication, Navigating HIV Resistance, is also available online for free; and other treatment publications are available for sale.
International AIDS Society -- USA
Professional organization providing continuing medical education programs for physicians; site contains back issues of Topics in HIV Medicine, their bimonthly publication that features summaries of talks from IAS courses, highlights of scientific meetings and review articles; call for copies of the publication. Site also contains IAS guidelines, including Recommendations for the Use of HIV Resistance Testing and Recommendations for the Management of Metabolic Complications.
Global network of non-government and community-based organizations working on international HIV/AIDS issues; position papers on topics such as access to care and treatment, discrimination and stigma and vaccine development; very little treatment information; be sure to check out the online slide show, Ethical Principals, Current Guidelines and Quandaries.
Johns Hopkins AIDS Service
Offers an up-to-date literature review; animation of the HIV life cycle; a Question of the Week; PDF versions of useful publications including Medical Management of HIV Infection; and current and archived issues of The Hopkins HIV Report, a monthly newsletter. Materials are geared toward healthcare providers but are a good resource for anyone familiar with the basics.
Bilingual, bicultural organization dedicated to raising awareness about liver disease through informational materials, community outreach, referral services, support groups and more; fact sheets in English and Spanish are available by calling LOLA; site also includes a useful section about liver donation and transplantation.
Major Drug Database
Database of sales information for major pharmaceutical companies, including those that make HIV-related drugs. Site includes information about market shares, patent expirations, sales projections and medical information; features information about more than 360 drugs from 33 companies (not all HIV-related).
Management of Hepatitis C: 2002; Consensus Development Conference Statement
Consensus statement from the National Institutes of Health (NIH) for the treatment of hepatitis C (available in HTML and PDF); created by a non-governmental group of researchers, doctors, patients and advocates; addresses HIV/HCV coinfection; easy-to-read, comprehensive document; site includes videocasts of the three-day conference that led to the development of the consensus statement.
Allows free access if you register with a password. Site includes: articles on research and clinical treatment of HIV/AIDS; MEDLINE (database of abstracts of HIV research articles) and DrugInfo (database of drug information); conference coverage; continuing medical education; patient information on HIV health topics; select articles from medical journals; and an "Ask the Experts" section. Content is relatively technical, but not overly so. Probably the best site to find out about an individual drug (search the DrugInfo database).
Comprehensive, up-to-date clinical manual used by many physicians for diagnosis and treatment of various disorders, including HIV/AIDS; go to Table of Contents or use the search engine to find whatever it is you're looking for; the manual can be ordered online or accessed free of charge through the Web site. Dense but valuable resource.
Treatment information, news reports and extensive conference coverage related to HIV/AIDS and HIV/HBV and HIV/HCV coinfection; PDF publications can be downloaded, some in Spanish. Treatment information about coinfection is also available by phone and mail.
National Association of People with AIDS (NAPWA)
National advocacy and education organization that hosts trainings and conferences, sponsors and promotes an annual National HIV Testing Day (June 27th, this year) and AIDSWatch, to help U.S. Congress members understand the needs of people with HIV/AIDS. NAPWA's free, advocacy-oriented, periodic email based newsletter, Positive Voice Update, last published in December 2003, will go back to being print-based later in 2004. NAPWA's recent publication, Your Passport to Managed Care: A Tool for Making Managed Care Work for You, can be ordered for free in English or Spanish using a link on the site.
National Center for Complementary and Alternative Medicine*
Part of the National Institutes of Health; not HIV-specific, although much of the information is relevant to HIV; site offers information about complementary and alternative medicines (CAM), trial sites conducting clinical studies of these therapies; a description of the clinical trial process; an online newsletter; and alerts about possibly dangerous interactions between CAMs and other medications. Call for information or to have documents faxed or mailed to you. Hotline is available in English and Spanish.
National Foundation for the Treatment of Pain
Not HIV-specific. Organization dedicated to providing support for people who are suffering from stubborn pain, their families, friends and the physicians who treat them; offers a patient forum, advocacy programs, information, referrals, support resources and direct medical intervention.
Coalition of organizations and individuals focused on the care and treatment of people in U.S. prisons with hepatitis C; site includes contact information for coalition members, treatment information and Department of Corrections HCV Treatment Guidelines by state (where available) in PDF format (some in both English and Spanish).
Governmental fact sheets about aspects of AIDS -- a basic overview, prevention, vaccines and therapies -- and links to related publications (primarily CDC).
National Institutes of Health Office of Dietary Supplements
Site contains fact sheets on vitamins and minerals; information about supplements; recall and safety notices; and the International Bibliographic Information on Dietary Supplements database (IBIDS), which provides access to published abstracts on supplements. IBIDS also contains a consumer section geared toward a more general audience. The office will try to find someone to answer your questions if you call or write. Direct requests for multiple fact sheets to the National Center for Complementary and Alternative Medicine (nccam.nih.gov).
National Library of Medicine Gateway
Site allows users to search many databases at the National Library of Medicine all at once, including MEDLINE/PubMed, ClinicalTrials.gov, Meeting Abstracts and more. Some abstracts contain links to complete articles, but most journals require payment to view the full-length article, unless you can get to a medical library. Presentations from conferences are sometimes available only as the pre-conference abstract, but often contain contact information to obtain the complete poster or presentation.
National Guideline Clearinghouse
Database of clinical practice guidelines for many illnesses maintained by the Agency for Healthcare Research and Quality (AHRQ). HIV-related guidelines include those from the American Academy of Pediatrics, the American Psychiatric the Association, Infectious Diseases Society of America, the National Pediatric and Family HIV Resource Center, as well as the more familiar guidelines updated regularly on AIDSinfo (aidsinfo.nih.gov); this site is designed for healthcare providers, but contains useful info for all.
Organization dedicated to developing HIV/AIDS leadership in communities of color. Site includes links to regional and national trainings and conferences, HIV/AIDS hotlines, policy and treatment publications; and a prison initiative, which offers a regularly updated resource list for HIV and corrections. Call or write to get referrals to other agencies, publications and general questions about HIV/AIDS answered.
National Native American AIDS Prevention Center (NNAAPC)
Site includes information on NNAAPC's technical assistance services, Native American HIV/AIDS statistics, prevention curricula and materials developed by NNAAPC and a resource guide to Native American AIDS service organizations and healthcare providers. Publications from a resource guide to training materials on HIV prevention for Native Americans, one catering to you, spirited people, gay people of color. Quarterly newsletter.
National Sexually Transmitted Diseases Hotline
Answers questions about STDs and HIV, provides referrals for testing sites, case management and treatment information nationally.
The National Women's Health Information Center*
Information about women's health and HIV in English and Spanish put together by the U.S. Department of Health and Human Services (DHHS). Site includes a Frequently Asked Questions section about HIV, information on DHHS activities and events, women's health statistics and related news. There's also an audio section where DHHS scientists talk about early days of HIV research. Call or write for information.
The Neuropathy Association
Includes basic information about peripheral neuropathy, a list of physicians who deal with neuropathy and support groups. Free registration required. The staff will answer questions about neuropathy over the phone or send materials to people.
New England Journal of Medicine
New England Journal of Medicine
Allows access to articles older than six months for free if you register with a password. This journal is a primary resource that features review articles and recent medical studies/findings, including the results of HIV/AIDS clinical trials.
New Jersey Women and AIDS Network (NJWAN)
Organization offers education programs for HIV-positive and negative women, covering topics such as pregnancy and HIV, safer sex, treatment adherence and sexuality. Maintains a nationwide database of obstetrical services, HIV testing sites, organizations for young women and family planning agencies to provide referrals to Warmline callers; some publications available for a fee by ordering online or calling; will fulfill information requests by mail to the best of their abilities.
User-friendly, regularly updated, one page fact sheets in English and Spanish. Topics include: basic HIV and AIDS information, individual HIV medications, opportunistic infections, lab tests, side effects, complementary therapies and many more.
North American Syringe Exchange Network (NASEN)
Links to needle exchange programs around the country as well as harm reduction sites and information. Call or write to get information about needle exchange programs in your area.
Site includes the OAR's annual plan and budget for all NIH AIDS-related research; detailed descriptions of all HIV/AIDS research being conducted throughout the NIH; a glossary of acronyms; archived reports of OAR-sponsored meetings; and transcripts in English and Spanish of the OAR's "Meet the Experts" sessions.
Office of Minority Health Resource Center
Site maintained by the U.S. Department of Health and Human Services; contains many publications on various illnesses, including HIV/AIDS (available online and in print); a list of upcoming conferences; many statistical reports; and a searchable database of health materials (click on "Search" on the main page); call to speak to information specialist who will do grant searches for organizations, send fact sheets, make referrals and give information about cultural competency training and outreach services.
Includes a medical dictionary, an English dictionary, a thesaurus, a computer dictionary, even a dream dictionary. And no ads!
On-line Medical Dictionary
People with AIDS Coalition Colorado (PWACC)*
Call or write to receive copies of the newsletter, which covers HIV news and lists clinical trials open for enrollment in Colorado; site allows people to ask treatment questions; PWACC will also answer requests for information by regular mail.
Pharmaceutical Research and Manufacturers of America (PhRMA)
Lists drugs in development for HIV/AIDS and other diseases, including manufacturer information and where the drugs are in the research process; industry news and press releases; link to information on patient assistance programs (www.helpingpatients.org).
Community research and education organization. Houses AIDS Library; Critical Path AIDS Project (online resource directory); Project TEACH (Treatment Education Activists Combating HIV) peer training program; and Y-HEP (Youth Health Empowerment Project) peer-to-peer prevention program. Call or write for information. Although focused on the Philadelphia area, they will collect resources and send them to people around the country, as well as direct them to services in their local area.
Physicians' Research Network
News and review articles focusing on the latest issues in HIV care; includes articles on laboratory tests, HIV/HCV coinfection, HIV treatment options, drug resistance and lipodystrophy. Intended for healthcare providers but a good resource for anyone already familiar with the basics. People requesting copies of The PRN Notebook without Internet access can fax or write to PRN with a mailing address and a description of their involvement with HIV (healthcare provider or PWA, for example).
Bimonthly glossy magazine published ten times a year dedicated to HIV issues; available in both English and Spanish versions. Site offers online version of the magazine and an archive of past issues back to 1994. Free copies available to people living with HIV by subscribing online. Site has a section on labwork (Labwork Made Easy). The parent company of POZ, Smart + Strong, also makes ComboCards, palm cards with information on scheduling, dosing, side effects and drug interactions of specific HIV drug combinations. They are available for free (www.combocards.com).
Information for patients and physicians about an approach to AIDS wasting management, prevention and reversal through nutrition, supplementation, resistance weight training, anabolic hormones and motivational techniques; online discussion group about lipodystrophy; e-based newsletter, a speakers bureau; a review of HIV health and quality of life information, a lipodystrophy list serve; useful links including many related to lipodystrophy, AIDS wasting and facial reconstruction; and a section on wasting/lipodystrophy in Spanish.
Advocacy, policy and education organization. Site includes lots of HIV treatment information: newsletters (PI Perspective and Wise Words); fact sheets and articles by topic; slide presentations from several conferences; a multimedia library that can be accessed online; and literature specific to women, available in both English and Spanish. Call the hotline for treatment questions on opportunistic infections, talking with your doctor, lab work, side effects, support from other PWAs and to request fact sheets. Referrals to other services available.
AIDS service and advocacy organization. BETA, treatment magazine published three or four times a year, is available online in HTML and PDF versions; for a free subscription, email or call; lots of treatment articles organized by topic, from AIDS 101 to Osteonecrosis; extensive glossary of HIV-related terms. Call for literature, to ask questions, to find out about local services, Latino & African American support groups, needle exchange, volunteer opportunities and more.
Seattle Treatment Education Project (STEP)
STEP Perspective and STEP Ezine are both available at thebody.com/step. STEP Ezine offers short, up-to-the-minute articles and STEP Perspective provides more in-depth coverage of treatment topics. Call the hotline for HIV/AIDS treatment information, referrals and questions about medication and treatment adherence.
The Sensible Guide to Using Complementary Therapies for Optimum Health
Site organized by one individual (Devan); not all HIV-specific; information on Ayurvedic medicine, acupressure, aromatherapy, traditional Chinese medicine, herbal remedies, Yoga, meditation and lots, lots more. Not the most organized of sites, but there's plenty of information about complementary therapies here.
Site includes TPAN publications (Positively Aware is particularly useful, especially the annual Drug Guide), available online or through subscription; email addresses for a pharmacist and a doctor who answer questions about medications, treatment and HIV disease; information about events in the Chicago area; and more. Call or write to request publications (Positively Aware is available in English and Spanish).
Treatment updates and policy analyses concerning various aspects of the epidemic, including research advocacy, treatment strategies and HCV/HIV coinfection Subscribe by email to the monthly newsletter, TAGline, which includes articles in Spanish. Issues of TAGline going back to 1996 are available in PDF format. Call or write with research and advocacy questions.
Viral Load Equivalents
Useful chart for converting logs to actual numbers -- useful for both HIV and HCV viral loads (For example, a viral load of log 5 = 100,000 copies); site includes lots of other clear, practical information about viral hepatitis, too.
Free booklets for individuals and organizations written for people with HIV and/or HCV, available by PDF download or through regular mail; topics include Easy-to-Understand Info About HIV Resistance, The Long and the Short of It: Side Effects and the Search for HIV Treatment that Fits the Individual and Dosing Matters: Getting the Most out of Your HIV Regimen. Most materials are also available in Spanish. Order online or call.
Bi-monthly newsletter, For Your Information, is available online or mailed to you free by subscription; although not focused on treatment, issues that affect treatment decisions are well-covered, such as stigma, isolation, youth, harm reduction and pregnancy; site includes an extensive database of service organizations and resources for HIV-positive women and their service providers in Ontario.
The Well Project
Email address and password required to access full site; site is aimed for HIV-positive women; chock full of news and information about various HIV issues -- individual medications, treatment strategies, opportunistic infections, exercise, legal topics, pregnancy and much more. Some articles are accompanied by summary slides; members can join discussion boards and receive a bi-monthly email newsletter. Hard copies of fact sheets will be sent upon request. They are producing a CD-ROM of the Web site, to be updated periodically.
Treatment information, fact sheets, supportive services and lots of links. Email the staff medical advisor directly with treatment questions; the staff will also forward medical questions to the medical advisor. Hotline provides treatment information, emotional support, newsletter requests and nationwide referrals; support group for Spanish speaking HIV-positive women at the agency.
Women and HIV
Information from the U.S. Department of Health and Human Services that provides a concise overview of HIV/AIDS in women.
Women's Interagency HIV Study (WIHS)
Description and updates about this large prospective cohort study designed to determine the natural history of HIV in women; opportunity to ask questions of the study's primary investigator online; limited treatment information.
WORLD (Women Organized to Respond to Life Threatening Disease)
Treatment information particularly about pregnancy, advocacy, news and HIV University; newsletter. Newsletter, World, is by and for HIV-positive women and their loved ones; site is currently over a year out of date, but should be up to date again soon. Call or write with questions and requests for information.
Archived copies of newsletter available online; call, write or complete online order form to receive free individual or bulk copies; email general questions about HIV/AIDS; site includes information about advocacy actions.
* Some materials available in Spanish.
Resource list compiled by ACRIA's education department. Particular thanks to Constance T. Chang for contacting each site to verify information.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.