GIVE OF YOURSELF
WHERE IT COUNTS
Channeling Online HIV/AIDS Info
to PWA's, Caregivers & Significant Others
in Areas Where Good Info Seems Scarce |
Protect Yourself
& Others 24/7/365
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in Bulk and Use Them |
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We learned our basic Internet skills originally by helping out a few close friends and family members gathering hard-to-get info on HIV/AIDS treatment and patient services during the 1990s.
Initially this simply consisted of poring through Usenet newsgroup postings, printing out the relevant ones, and forwarding them to my friends in Northern California. Since they reside in a county where information and support is sorely lacking in this area, it looked from the outset like getting more info to them might mean the difference between survival time and no survival.
Up at their end, my friends had become clients of a food bank serving persons at various stages of AIDS progression. Rather than just sit on the information for their own exclusive benefit, they took the initiative in sharing print copies of what I could send with a small network of AIDS patients, caregivers and loved ones.
Considerable excitement resulted. Notably, when news came out about outcomes of combining 3TC (at that time specifically) with AZT, even a few physicians treating AIDS patients were among the support group members who took note of the power of retrieving information from online.
We've continued to channel information in this way, keeping people up to date on developments such as new combination therapies, details on protease inhibitors, treatments for secondary infections, and other aspects of HIV/AIDS concerns.
The existence of the information helped prod numbers of patients and others affected to begin ferreting out, sharing, discussing and comparing information (and experience) on their own. Thus, what began as one-to-one mailing grabbing for any strand of hope has helped spark a spirit of empowerment among a substantial group.
This activity also has provided encouragement for patients themselves to take a role in pursuing treatment decisions more assertively, and hopefully, than they might have done otherwise. Thus people are getting medical care they otherwise would not have gotten for lack of information.
My friends and their support circles remain understandably cautious, because HIV related illnesses have proven baffling, insidious, unpredictable. Treatment decisons are complicated not only by uncertainty about treatment outcomes, but also by legal, social, financial, recovery, family, self-esteem. mental health, nutrition, environmental and other factors.
Nevertheless, it's clear that we have bought survival time for people because of this educational experiment we backed into. The research advances highlighted in the Vancouver conference several years ago came to suggest HIV-related illness might become a long-term chronic but manageable condition. This would imply that collecting and providing information in this way not only can buy time but also might save lives, period.
Our own efforts began and will continue at the friendship and micro-community level. We're also aware, of course, that our efforts could be replicated to benefit thousands of rural communities in the U.S.
Among the most useful URLs for us over the last several years have been:
(Also on this page, you'll further page links to topical URL collections on more specific areas of AIDS related concern. Many of the URLs on these pages may have expired by now, and most have been replaced or supplanted by more timely info. But we leave the pages posted for archival purposes, and to illustrate what was useful at the time - for a couple people helping out a couple other people with that crazy new "internet access" thing.)
This kind of service doesn't take a lot in the way of money. It's time-intensive, and caring-intensive. If anything, organizing this into a program of any significant size could make the info flow to cumbersome to be useful. The info is readily available online. What's clear to us, though, is that there are huge numbers of persons who need the info but don't get it where they live and don't happen to have direct or indirect online access, yet.
As we continue this info-gathering and distribution, we're open to inquiries to share further on how we've gone about it. We also are open to seed money or material contributions which will facilitate putting more time into this. Mainly, we want people to know that getting the info from one friend to another can achieve much more than we dared to hope.
HIV/AIDS info posted here came from searches we did for several friends who became infected with the HIV virus in the early-mid 1990's. More up to date information is available from many other sources, some of which we link to here. We've left up most of the early links we found as an archive, though, to give others a picture of the sources we were able to find in helping out those we knew personally. Non-profits are great, but one-to-one caring is where it's at.
HIV & AIDS INFORMATION LINKS
AIDS TREATMENT INFORMATION
These are sites we used to visit regularly for info to transmit to friends living with HIV/AIDS unable to access timely, accurate info in the communities where they live. We are in process of updating these to replace the links that have expired.
A
IDS TREATMENT DATA NETWORK
National AIDS Treatment Advocacy Project - Papers on protease inhibitors, viral load, conference reports.
IAPAC
Project Inform - Leading community based HIV/AIDS treatment information and advocacy organization. Site includes up-to-date facts and discussions of Antiviral and Immune Based
therapies currently available through toll-free hotline. Info also on project's public policy and advocacy efforts and outreach programs. PI fact sheets and other publications accessible via site. (Project Inform's toll-free treatment information hotline for
HIV/AIDS patients and their caregivers: 800-822-7422 or 415-558-9051.
Our Hotline hours are Mon - Sat, 10am- 4pm Pacific standard time. )
SCI.MED.AIDS NEWSGROUP
KEYWORD SEARCHES (NOT ELSEWHERE CLASSIFIED)
- Safe Works
AIDS Project
- Features information about needle exchange and harm reduction, including
lists of needle exchange projects nationwide.
- Safer Sex Page
- Features fact sheets, newsletters, brochures, safer sex forum, info for
counselors, and multimedia exhibits.
- STOP AIDS
- A prevention organization for gay/bisexual men in San Francisco, CA which
features lists of meetings, programs for young men, African American men, and
Latino men, among others, newsletter, hotline.
- Center
for AIDS Prevention Studies - AIDS/HIV Resource Links
- A good listing of AIDS/HIV related web links broken out into categories.
- Just Say Yes
- A Pro-Sex, Safer Sex Guide for Teens.
- Centers for Disease Control and Prevention
- AIDS
Treatment Data Network
- A national clearinghouse for information about access to HIV treatments
sponsored by the AIDS Treatment Data Network in New York. Has current
information about how to gain access to drugs and treatments which are available
through federal, state or pharmaceutical industry-sponsored programs plus New
York area HIV Clinical Trials.
- ARIC: AIDS Research
Information Center
- A private, non-profit AIDS medical information service offering current,
medically accurate information on AIDS treatment and research in plain English
to anyone who requests it.
- AIDS Coalition to Unleash Power (ACT UP)
- Project Inform
- An HIV treatment information organization working on behalf of people
living with HIV infection in areas of treatment, research and advocacy since
1985. Project Inform provides a free nationwide treatment Hotline as well as
Town Meetings presenting treatment information (monthly in San Francisco and
elsewhere by request.) Information sheets and discussion papers are available by
telephone and on the internet.
- AIDS Treatment
News
- A weekly newsletter.
- National AIDS
Treatment Advocacy Project
- Reports from conferences, updates on protease inhibitors, clinical research
and development.
- AIDS
Project Los Angeles (APLA)
- The largest HIV multiservice center in California. Go to their home page
to browse HIV L.A.,
an extensive directory of resources for people with HIV in the L.A. area.
Treatment-related services include:
Positive
Living, an excellent free monthly newsletter.
- The Body
- HIV/AIDS-focused Web site. Includes articles and treatment news from the
Treatment Action Group (TAG) in New York.
- Philadelphia
Fight
- Philadelphia FIGHT is a Community-Based Research Initiative on AIDS in
Philadelphia. Founded in 1990, FIGHT is a consortium of physicians and people
living with HIV who have joined together to test potential treatments for
HIV/AIDS and its complications.
- AIDS Information
Newsletter
-
From the Veteran's Affairs AIDS Information Center.
- PoWeR: Program for
Wellness Restoration
- Information on approaches to preventing/reversing wasting syndrome in HIV
disease.
- American
Academy of Ophthalmology
- Basic information about AIDS/HIV and the eye. No descriptions of treatments
in clinical trials.
- AIDS Patents Project
- Features a database of AIDS patents.
- HIV Sequence Database
- Scientific papers on HIV gene
sequences from the Los Alamos National Laboratory.
- The University
of Cambridge
- Has some pictures for downloading of HIV protease.
- WebPath
- The Internet Pathology Laboratory for Medical Education. Pictures of HIV,
PCP, CMV and other infectious agents.
- Acupuncture.com
- Information on acupuncture, Oriental and Chinese Medicine, herbology, Qi
Gong, a practitioner referral list, and more.
- The AIDS Research Center in Seattle is conducting a nationwide
observational study. Anyone who uses alternative medicine as part of their
treatment plan can participate.
- Herbal
Resources
- Links and downloadable information about herbs. Join the
alt.folklore.herbs newsgroup for an
ongoing discussion about herbs as treatment.
- The Yoga Group, Inc.
- A group based in Denver, Colorado with information about yoga for people
living with HIV and AIDS, and links to other sites.
- Critical Path HIV/AIDS
Web Site
- Extensive and exhaustive HIV/AIDS site. Something for everyone.
- HIV
Electronic Information Media Review
- An electronic newsletter with a selection of information from all over the
Internet, updated every two weeks. Also, Australian and Pacific information,
clinical trials, and facts sheets on conditions and treatments.
- HIV/AIDS
Information Outreach Project
- Links to government, scientific and technical information, academic and
reference materials, cultural resources, community resources, and the resources
of the New York Academy of Medicine.
- GMHC's Living
with HIV or AIDS
- Information on medical care and treatment, nutrition, mental health and
counseling services, support groups, financial concerns, legal concerns, alcohol
and drug use, insurance, and emergency services.
- The
Information Exchange
- UK site providing an important forum for exchange of views on HIV and Aids
treatment, care and research for patients, clinic staff, GPs, the media and the
general public. Excellent clinical trial information, including many
treatments not yet being studied in the US.
- GENA Mailing
List Archives
- Where you'll find many discussion groups about HIV/AIDS, including AIDS
dialogue, AIDS drugs, AIDS and spirituality, AIDS drug trials, and women and
HIV.
- HIV InfoWeb
- Features treatment newsletters, clinical trials, prevention, legal and
housing info.
- Gay Men's Health Crisis
- Features treatment and prevention information, seminars, support groups,
hotlines, newsletters.
- Kairos Support for
Caregivers
- Features classes, seminars, support groups, and downloadable materials.
- XI
International Conference on AIDS
- The conference was held July 7-12, 1996 in Vancouver. Frequently updated
site with newsletter.
- Queer Resources Directory
- Massive archive of files relating to all things queer. Links to health and
sexuality issues, including information on HIV/AIDS.
- AIDS Memorial Quilt
- CyberQueer
Lounge
- Links to AIDS info including the Digital Quilt, as well as other links of
interest to the lesbian, gay and transgendered community. Updated and added to
often. Lots of political stuff.
- Children's Animated
Television HIV/AIDS info
- Coalition for
Positive Sexuality
- Ben Gardiner's AIDS/HIV BBS
- Queer
Infoservers
- Located at UC Berkeley. Health section with links to a variety of sources
for HIV/AIDS and related info.
- CDC Fax-back AIDS
Information
- CDC HIV/AIDS
Surveillance Report
- AIDS and HIV cases by age, gender, race, risk factor, and area.
- HIV/AIDS
Ministries Network
- Joint United Nations Programme on
HIV/AIDS (UNAIDS)
- National Association of
People With AIDS (NAPWA)
- National Commission
on AIDS Reports
- National Institute of
Allergy and Infectious Diseases (NIAID)
- National Library of
Medicine AIDS Information
- New York Times Syndicate AIDS News
- Newsgroup: sci.med.aids
- OUTline
- Red Ribbon Net
- Weekly Epidemiologic Review
- World Health Organization
- InfoPack Newsletter
- From Community Prescription Service. Articles on anemia, MAC prophylaxis.
(added 4/2/96)
-
CDC National AIDS
Hotline
- National
AIDS/HIV Hotlines
- From The Body.
- State
HIV/AIDS Hotlines
- National HIV/AIDS Treatment Hotline
- 1-800-448-0440
For federally approved treatment
guidelines and information. Calls accepted from people with HIV, families,
friends, health care providers. All calls are confidential.
- Drug Information and Clinical Trial Hotline
- 1-800-874-2572 (1-800-TRIALS-A)
Free national
hotline, in English and Spanish, for information about AIDS Clinical Trials.
Hours are Monday through Friday, 6:00am - 4:00pm (California time).
- CDC AIDS Daily
- Updates from the Centers for Disease Control taken from journals and other
publications around the world. Ten one paragraph abstracts with references,
posted to the Web each morning.
- HIVNET/GENA Information Server
- Downloadable texts from mazagines, newsletters and other periodicals. A lot
of good information, but some of the text files on conditions and treatments
are very out-of-date, so be aware of the date at the bottom of each file. Links
to other places with HIV/AIDS information on the Web.
- JAMA HIV/AIDS
Information Center
- The Journal of the American Medical Association's HIV/AIDS site. Excellent
source for journal articles, abstracts, the CDC Daily, treatment guidelines,
and more.
- British Medical Journal
- HIVNEt's list of
Magazines, Periodicals, Libraries
- Journal of the
American Medical Association
- Science Magazine On-line
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