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Editorial

Working the Web

HIV/AIDS Information on the Internet

Decmber 1996

Information alone won't cure AIDS, but access to the right information at the right time can be crucial to the health and longevity of patients with AIDS. It can also be crucial to the effective treatment of HIV infection and the many opportunistic infections that are associated with advanced HIV disease. A study published earlier this year in The New England Journal of Medicine found a strong correlation between information about HIV disease and outcome of treatment: patients whose physicians had considerable experience in treating HIV infection were 31% less likely to die than patients whose physicians had little experience.

In the past year the treatment of HIV disease has been revolutionized, chiefly but not solely by the additional of the protease inhibitors to the AIDS armamentarium. Combination therapy is now the standard of care for patients with advanced disease, and the sheer number of therapeutic combination now available to the practitioner is at once heartening and a bit bewildering. Choosing the best combination of agents for a particular patient presents a genuine therapeutic challenge, one that is best met if both the practitioner and the patient appreciate the basis for combination therapy (see the patient-aid in this issue, "The Rationale for Combination Therapy").

Like advances in therapy, adverse reactions to therapy can also occur with unexpected and overwhelming suddenness, as a recently issued F.D.A. alert on the nephrotoxic potential of cidofovir makes clear (see "F.D.A. warning on the use of cidofovir"). The Internet offers concerned clinicians another way of keeping abreast of these changes, and it offers physicians the benefit of experience they might not yet have.

A broad range of reliable, relevant clinical information about HIV and AIDS is currently available on the Internet. This wealth of information includes the results of the latest clinical trials, lists of FDA-approved drugs for treating AIDS-related OIs, interim data on new therapies, and discussions of the pros and cons of various treatment options. Physicians can also use the Internet to obtain lists of open clinical trials in their area (including patient requirements for enrollment and contact phone numbers).

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Practitioners who want straightforward fact sheets on HIV disease and related OIs can find that information -- for themselves or their patients -- on the Internet, and they can print out those fact sheets in Spanish as well as English. The Internet can also be used to access information about local Medicaid and AIDS Drug Assistance Plans for patients without insurance.

Clinicians may also use the Internet to further their knowledge about HIV infection -- by enrolling in on-line Continuing Medical Education (CME) courses or by viewing case studies of patients. They can search National Library of Medicine databases, download pictures of HIV, and view epidemiologic data from the Centers for Disease Control and Prevention (CDC). In addition, they can use the Internet to find out about so-called alternative therapies or even to get expert medical advice from across the country.

AIDS information on the Internet can be of widely varying quality. Anyone with a computer and a modem can publish on the Internet, so it is important to take a close look at the person or organization that is providing the information. It is also important to recognize that helpful and reliable information can come not only from doctors and universities but from community-based service organizations and activist groups.


Getting started

Using the Internet -- or simply accessing it -- can be daunting at first. But once the connections are set-up, getting on the Net -- and getting valuable information off it -- is easy, engrossing, and rewarding. To access the world of HIV/AIDS information that is on the Internet you will need a computer, a modem, and an Internet provider. Most public organizations, a list that includes hospitals, universities, and government agencies, offer Internet access, and many private organizations are beginning to offer this service as well.

To link your home computer to the Internet you will need to contact one of the many companies that provide this link-up. They are listed in the yellow pages of the phone book and they advertise in local newspapers as well as national magazines. Rates and services tend to be equivalent in this very competitive business. Once you have Internet access, you will need to use either Netscape software or Internet Navigator software to get around. Both are offered free of charge by providers, and installation is simple.

To access one of the sites listed below, simply click on the underlined "links." At sites as well, any text that is underlined is a link. (These links are usually in a different color.) If you click on the underlined text, you will proceed to another page with more information. To get back to where you started, click on the BACK button at the top left of your screen. You can also click on the navigation bars and buttons at the side, top or bottom of a site to take you to another page.

It is easy to get lost in the abundance of information on the Internet. To make it easier to get around, once you have found a site that you like and want to come back to, make a bookmark for that site. To do this, go to the BOOKMARK menu at the top of the screen while you are at the site and select ADD BOOKMARK. This saves the address of that particular site, so that you don't have to type in the address -- or remember it -- every time you want to visit the site. The next time you log onto the Internet, you simply go to the BOOKMARK menu and select the name of the site you saved. Click on the site name and it will open for you immediately.


Staying sane

Like AIDS treatments, the Internet can change with overwhelming speed. As a result, you will occasionally find that an address you have entered is no longer correct. More often you will try to access a site and be told that the site is busy. These problems are all normal on the Internet. If you are having problems, stop. Try quitting Netscape or Internet Navigator and starting again. Or take a break. Go get a glass of water, talk to a human being, and come back in five minutes to try again. The problem is probably not with you or your computer, but with glitches in the technology or phone lines -- or in a supercomputer half a continent away.

Most importantly, keep a clock near your computer. There is so much to see and learn on the Internet that you can get carried away and be sidetracked for hours -- trying, for example, to read all 100 pages of a National Academy of Sciences report, or checking college basketball scores at the ESPN site.


Road Map to HIV/AIDS Information
on the Internet

General resources:

AIDS Research Information Center (ARIC)
A private, nonprofit AIDS medical information service offering current, medically accurate information on AIDS treatment and research in plain English.

AIDS Treatment Data Network (ATDN)
A community-based organization in New York City.

The Body
Written for a broad-based audience, much of The Body's treatment information is geared toward people with AIDS. Most articles are taken from excellent community-based newsletters. This site includes information on women-specific treatment issues.

HIV/AIDS Treatment Information Service (ATIS) of the U.S. Public Health Service

Immunet

International Association of Physicians in AIDS Care (IAPAC)

Journal of the American Medical Association HIV/AIDS Information Center

Project FIGHT
A Community-Based Research Initiative on AIDS in Philadelphia, that is a consortium of physicians and people living with HIV who have joined together to test potential treatments for HIV/AIDS and its complications.

Project Inform


Treatment issues:

The array of therapeutic issues covered on the Internet includes the management and treatment of OIs, prophylaxis, case studies of patients with AIDS, new developments, and treatment guidelines.

AIDS Treatment News (ATN)
Published twice monthly by John James. Excellent, up-to-the minute information on experimental and standard treatments.

Medscape's AIDS Page
Heavily clinical. Edited by Drs. Jeffrey Laurence and Jay Dobkin. Includes case studies of patients with AIDS (CME credit available). Register and receive a password to log-on (free of charge).

Opportunistic Diseases from IAPAC
Clinical and scientific information developed by IAPAC and published in its journal.

Physician Survey from the Gay Men's Health Crisis (GMHC) Treatment Issues newsletter
Survey of leading AIDS physicians and their current practices.

Treatment Overview from The Body

U.S .Public Health Service Guidelines for Prevention of OIs from ATDN


Drug information:

ATDN's Glossary of Drugs
Exhaustive glossary of drugs, some linked to fact sheets, written in clear, simple language.

Anti-Virals from The Body
General guidelines for the use of protease inhibitors, reverse transcriptase inhibitors, viral load testing.

Antiviral Therapies from IAPAC
Latest results from clinical trials, plus government recommendations.

Medical Sciences Bulletin
Managed by Pharmaceutical Information Associates, Ltd. Provides reviews of drugs and updates on the latest drug approvals.

Drug Database from PharmInfo Net
Database searchable by generic and trade names. Not just AIDS-related drugs.

FDA Approved Drugs for HIV Infection and AIDS-Related Conditions
Table of FDA-approved drugs from ATIS.


Access to treatment:

ATDN's Access Project
State-by-state directory of medications available for HIV and AIDS through Medicaid, AIDS Drug Assistance Programs (ADAPs), and national pharmaceutical industry patient assistance/expanded access programs.


Alternative therapies:

ATDN's Alternative Treatments
General information and follow-up links on anything from garlic to cat's claw to acupuncture. Site answers submitted questions.

Bastyr University AIDS Research Center
Based in Seattle, Bastyr is studying the use of alternative medicines to treat AIDS, with a multilevel survey of HIV+ individuals using alternative health practices.

Keep Hope Alive
Information on nutritional, bio-oxidative and alternative therapies for the immune-compromised.


Clinical trials:

AIDS Clinical Trials Information from the CDC
All open AIDS clinical trials for adults and children in the U.S. Protocol database for all trials includes patient inclusion and exclusion criteria, laboratory values at entry, drug information, and names and contact phone numbers for all participating clinics.

CenterWatch Clinical Trials List
Trials available across the country by state, with very brief descriptions, contact names, and phone numbers. Profiles the centers conducting the trials. Not just for AIDS/HIV.

Trials Search: California HIV Clinical Trials
Database of trials in California, searchable by location, drug or treatment. Or fill out a comprehensive patient information sheet, and it will list clinical trials that meet your specifications. Goes national at the beginning of 1997.


Laboratories:

HIV Sequence Database from the Los Alamos National Laboratory
Retroviral genetic sequence data and Human Retroviruses and AIDS, an annual compendium of HIV information. Searchable database of HIV sequences.

WebPath
The Internet Pathology Laboratory for Medical Education. Pictures of HIV, Pneumocystis carinii, CMV, and other infectious agents.

World Health Organization Sequences and Related Information


Journals:

Because they rely on subscriptions and advertising to cover operating expenses, scientific and medical journals typically do not provide full-text articles on the Internet. However, many journals are beginning to provide abstracts or news releases of articles, and some include selected full-text articles as well. However, journals published by the U.S government are in the public domain and are widely available on the Internet.

British Medical Journal (BMJ)
Abstracts or press releases for most articles, and full-text of some. Search of classifieds. Register on-line (free of charge).

Journal of the American Medical Association (JAMA)
Register on-line (free of charge) to access tables of contents, press releases, selected abstracts and some full-text articles.

JAMA HIV/AIDS Library
Full-text of selected HIV-related articles from JAMA and other specialty journals.

Morbidity and Mortality Weekly Report (MMWR)
Full-text of all issues from 1993 on. Not available in text-only versions. Adobe Acrobat Reader software (including graphics) is needed to view issues.

Nature
Register on-line to access summaries of all articles and selected full-text articles.

Science
Full-text and abstracts of all articles. Database of back issues searchable by author, title, subject and word.


Conference calendars:

From IAPAC
Major international HIV/AIDS conferences, with contact phone and some e-mail addresses.

From Immunet
Exhaustive list of conferences in the US and abroad. Searchable by date, location or title.


CME course listings:

From Healthcare Communications Group
Lists several AMA-approved CME courses available through the Internet.

From Immunet

From Medscape


Expert advice:

From The Body
Wide variety of clinical to general questions about HIV/AIDS answered by Dr. Joel Gallant, of the Johns Hopkins University School of Medicine. Updated regularly.

JAMA Expert Advice
Questions faxed on professional letterhead to the advice line are answered by Chris Woodward, DO, Director of the HIV Primary Care Clinic at St. Joseph's Hospital in Reading, Pennsylvania. Posted on-line.

Vanderbilt University HIV/AIDS Project
Questions concerning HIV/AIDS information resources answered individually by e-mail. Not posted for public use.


Caregiver resources:

CDC Guide to Caring for Someone
Basic information about HIV, how to give care, protect against infections, recognize symptoms, make decisions, and provide emotional support.

Kairos Support for Caregivers
Based in San Francisco, offers classes and seminars, downloadable articles and fact sheets.


Fact sheets:

From ATDN
Simple, one-page descriptions of treatments and conditions. Also available in Spanish.

From GMHC
Oriented towards patients.

From National AIDS Treatment Information Project
Prepared by Beth Israel Hospital and San Francisco General Hospital. Oriented towards patients.

Paul A. Volberding, M.D., is Editor-in-Chief of HIV Newsline and AIDS Program Director at San Francisco General Hospital.

Pamela DeCarlo is with the Center for AIDS Prevention Studies, University of California San Francisco, San Francisco, CA.





  
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This article was provided by San Francisco General Hospital. It is a part of the publication HIV Newsline.
 

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