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G. MAURISSON, C. BOULLANGIER, S. MAILLOT, D. LAVIGNE, A. RICHERT, A. CAPRANI Abstract accepted for the XIIth International Conference on AIDS, Geneva, June 28 – July 3,1998 Extended version (980628/C/1311) published by Monduzzi Editore, International Proceedings Division
Introduction Our internet web site has been developed to provide information on numerous subjects concerning AIDS and other diseases. This Internet web site is intended for physicians as well as HIV+ or other persons. Compared to other medias, the internet network offers new possibilities to transmit rapidly information to a high number of persons under a low cost. AIDS is a subject particularly adapted to Internet technology, due to some of ifs features. Indeed, it is an epidemic which concerns a high number of persons, directly (infected people, health-care people, people participating in fighting AIDS) or indirectly (prevention). It affects all countries of the world, particularly the developing countries, for which the inhabitants have till now only a limited access to medical informations, among others (due to paper price and postage cost which have become excessive). It is one of the human diseases whose expression presents one of the largest polymorphisms. Moreover, its clinical aspects and physio-pathological mechanisms involved bave similarities with other diseases, leading researchers to confront their works with those of other diseases. Similarly certain social and economic aspects have similarities with other situations.
Materials And Methods To develop our Internet web site, we use informatic material belonging to several members of Positifs, association fighting AIDS, and have at the moment no financial support. Medical and non medical information capture occurs in several steps, involving members of Positifs (medical advisers and researchers, informatic data capture masters, webmasters, readers): data selection (scientific databases in particular), conception, then writing of papers, informatic capture, re-reading, HTML capture, (then final re-reading). This information is written in French, some have already been translated to English and we are about to translate them to other languages. Till now, most of other translators are volunteers ; paid translators would be necessary but only possible with a financial grant. Since we put our website on line (at the end of May 1996), most of the tasks described below have been carried out by members of Positifs (some of them are HIV+), which all are volunteers.
Results
A. Quantitative Aspects. A year and a half after its creation, 100,000 connections to this web site have been noted (October 1997), and 200,000 have been reached (May 1998). New more than 20,000 connections are noted every month. More than 700 pages have been developed, information on numerous subjects concerning AIDS, particularly official and non-official treatments, various testimonies. In addition, we lodge four other associations on our site. We are asked more and more questions by e-mail, particularly from France, Africa, Belgium, Canada and Switzerland. B. Qualitative Aspects. The data included in this site are presented in a general index. All this information is available at any time. Since the internet technology allows to assure information perpetuity, when some of them are no longer up to date, they are transferred to the « Archives heading » of the site, and some are actualized.
Brief survey of this information
Medical aspects of AIDS (content)
I. Preliminaries 1. History 2. HIV description 3. HIV cofactors 4. Definition of the stages of asymptomatic seropositive, ARC and AIDS 5. Transmission 6. Natural history of HIV infection 7. Statistical situation of HIV epidemy II. Biological markers of HIV infection III. Clinical aspects, treatments and prophylaxies of opportunistic infections 1. Introduction 2. Primary HIV infection 3. Persistant generalised lymphoadenopathy 4. Alteration of general state of health 5. Bronchopulmonar and aerian superior tracts aspects 6. Neurological aspects 7. Digestive aspects 8. Cutaneo-mucous aspects 9. Kaposi sarcoma 10. Type B non hodgkinian lymphoma and hodgkin disease 11. Rheumatological aspects 12. Thrombopenia 13. Pediatric aspects IV. Clinical and biological follow up V. Useful preventive measures for infected or non infected HIV persons VI. HIV and cofactors treatments A. Preliminary B. Nucleosides analogues 1. AZT 2. ddC 3. ddI 4. D4T 5. 3TC 6. 1592U89/abacavir 7. AZT + 3TC, (Combivir®) 8. FTC C. Non nucleosidic reverse transcriptase inhibitors 1. Nevirapine 2. Delavirdine 3. Loviride 4. Efavirenz / DMP-266 5. Adefovir 6. HBY 097 7. MKC 442 D. Protease inhibitors 1. Indinavir 2. Saquinavir 3. Ritonavir 4. Nelfinavir 5. Saquinavir /Fortovase© 6. 141W94 (VX-478) 7. ABT 378 8. Palinavir 9. Amprenavir E. Other official antiretroviral therapies 1. Hydroxyurea 2. Anti-sens, E.3. Inhibiteurs de l’intégrase (AR-177) F. Tritherapies and multitherapies G. Vaccines VII. Annexes A. Mutagenic effects of nucleosidic analogues B. Precisions on medicines interactions C. Abbreviations
Medical papers of Positifs Association Among papers dealing with HIV infection: « Tritherapies: directions for use of protease inhibitors », « A natural protease inhibitors present in olive leaf extract », « Alternative / complementary therapies: state of research », « Naltrexone, a real efficient immunomodulator at each step of HIV seropositivity », « Benefit of glucuronamide for HIV+ patients », « Pao pereira tested in USA », « Vitamins, trace elements, essential fatty acids », « Stress and AIDS », « N-acetyl cystein and macrophages », « Acyclovir, a hazardous treatment of herpes for seropositive persons, but also for non seropositive ones », « Death of all seropositive persons treated with zidovudine in replacement of THA », « Vaccines against Hepatitis B, against flu, against tetanos: effect in vitro and in vivo on HIV ». Other papers deal also with other pathologies; in the case for instance of : « Effects of antibiotics on immune defense, benefit respect to HIV infection and other diseases », « Tuberculosis », « Angiogenesis inhibitors: shark against Kaposi, prostate cancer… », « AIDS and mad cow (prions) », « Grapefruit pips against candidas, parasites and viruses », « About hepatitis B vaccine controversy », « Non conventional non pharmacologic approach to opiates substitutes », « Rare diseases and orphan drugs ».
Summaries and synthesis on AIDS International Conference We started this heading with the Vancouver Conference, a similar work will be published after the Geneva Conference. We plan to do the same with conferences dealing with other pathologies (autoimmunity, cancer, virology, prions…).
Non medical aspects An index of associations and institutions taking part in AIDS fighting as well as documentation centers and commmunity associations particularly concerned by AIDS, composed of more one thousand addresses classified by country. The countries have been indexed by alphabetic order. For each organism, we tried to mention some of their missions or main specificities, using a system of 23 abbreviations: A : Assistance psychologique et/ou sociale et/ou soutien (Counselling and/or welfare services and/or support) Estimation by country of HIV infection prevalence. Presentation of other associations: Arbor, Caritig, Dessine moi un mouton, Didier SEUX, Espoir Vie Togo, Fact-Line, Fondation Espoir Guinée, ICW, Internet Gaipied, Intersocial, Parsifal, le Patchwork des Noms, Positifs-Italie, Sid’Afrique, Sol En Si, les Tontines de la Bastille, Vaincre le Sida. Testimonies of HIV+ persons concerning particularly social/economic or therapeutic exclusion (Africa, prisons, drug addicts…). A new urgent fund (« Fond d’Aide Rapide ») created by Positifs Association to help HIV+ people who are in a difficult social and financial position due to their illness. Prevention and AIDS fighting by artistic creation (paints and drawings exhibition, poetry) and by « Calendar of People Who Lived With AIDS ». Project of medicine collection for the most disadvantaged persons in a combined associative operation.
Internet specific headings Direct connexion with other sites allowing an easy access to complementary informations. Sites dealing with HIV infection, Hepatitis, and others severe diseases, with which we established links: VIH.org, HIVNET, Sid’Ados, CRIPS, Galaxie médecine, Aide Info Sida, INFO SIDA, Thérapeutiques alternatives du Sida, le Village AIDSIDA. Creation of internet sites for other associations within our site: Agir pour sa santé, Didier Seux, Positifs-Italie, Virus Village (Côte d’Ivoire). We propose a similar service for other associations and institutions (free for the less fortunate). The FAQ (Frequently Asked Questions) is a communication system of questions and answers, extremely developed on the net, which is much consulted. The FAQ of Positifs Association website are established through e-mails, but also through postal mail or faxes, in the framework of « Service des réponses aux courriers » of Positifs Association and of its publication, « Sida Tout Va Bien ». These FAQ deal with all medical and non medical aspects of AIDS, but also with other fields as cancer, hepatitis, autoimmune diseases, degenerative neurologic diseases, prions diseases, nutrition, drug addicts, alternative/complementary treatment, official treatments, treatments under experimentation, etc… The FAQ themes are presented by alphabetic order. Each question is indexed by one or more keywords (2 to 6) corresponding to one or more subjects.
Alphabetic list of FAQ subjects Acyclovir, Africa, AIDS Dementia Complex (ADC), AID’s origin, AID’s primo-infection, Allergy, Anemia (megaloblastic), Angiogenesis inhibitors, Antioxidants, Anulingus, Aphtosis, Apoptosis, Asie, Aspergilosis, Asthenia, Autoimniune disease. Bactrim, Biological markers, BIRM, Box tree/SPV 30. Cancers, Candidiasis, Carotene, Cell-mediated Immunity, CD4 lymphocytes, CD8 lymphocytes, CHAM 3, Chlamydia trachomatis, Clay, Clinical trials, Cofactors, Communication: medical language, Condoms, Crohn disease, Cunnilingus, Cupper, Cryptococcosis, Cryptosporidiosis, Cytomegalovirus (CMV). Dermatology, Diarrhea, Diethylstilbestrol (DES), Dioxin, DNCB (dinitrochlorobenzene), Drug addiction. Ebola virus, Encephalopathies, Endlife support, Eosinophilia, Epidemiology, Epstein Barr virus, Exclusion. Fellatio, Ferritin, Fever Foeto-maternal transmission (HIV). GP110, Genetic mutations, Glucuronamide, Glutathione, Grapefruit pips. Hepatitis A, Hepatitis B, Hepatitis C, Herpes Virus 6 (HHV6), Herpes Virus 7 (HHV7), Herpes Virus 8 (HHV8), Herpes Zoster, Histamin, Histoplasmosis, HLA system, Humoral immunity. Indinavir, Infectivity, Integrase, Interleukine 6 (IL6), Internet, Iron, Isospora belli. Kaposi Sarcoma, Kiss, Kousmine method. Leukoplasia (oral hairy), Libodo, Lipids, Long Term Survivor (LTS), Lymphomas. Mad cow, Melatonin, Microsporidiosis, Miscellaneous informations, Multiple sclerosis, Mycobacterium avium complex (MAC), Mycoplasma, Mycosis (antifungal agents). Naltrexone, Natural killers. Olive leaf, Oxydative stress. PAO Pereira, Papillomavirus, Parasites, Patient-physician relationship, Pediatry, Placebo, Pneumocystis carinii, Premature ejaculation, Prions, Prognostic, Progression (HIV infection), Progressive multifocal leukoencephalopathy (LEMP), Prostaglandins, Proteases. Research (state of), Retinitis, Reverse transcriptase, Rheumatoid arthritis. Seborrheic dermititis, Secrecy (medical), Selenium, Sexual relations with a seropositive person, Sexually Transmitted Disease (STD), Shark cartilage, Smoking, Socioeconomic analyses, Sociology (of Health), Sodomia, Stress, Sulfamethoxazole-trimethoprime, Superoxide dismutase (SOD), Syphilis, Systemic lupus erythematosus (SLE). Tat, Test (HIV), Thrombocytopenias, Thymeleacees polysaccharides, Toxoplasmosis, Transmission (blood), Transmission (sexual),Transmission (HIV) durring transplantation, Trials (clinical), Triglycerides, Tritherapies (antiretroviral), Tropism (cellular), Tuberculosis, Tumor necrosis factor (TNF). Uterus (displasia, cervical cancer). V3 (loop), Vaccines, Vaccine (antihepatitis B), Vaccine (anti HIV), Viral latency, Viral load, Vitamine A, Vitamine B, Vitamine C, Vitamine E, Vitamine PP. Wasting syndrome, Weightloss. Zinc, Zoophilia. Chat forum organization is still under study, since it requires a quasi-permanent animation which cannot be provided by volunteers only.
Conclusion Thanks to its rapidity of data transmission and to its weak use cost, which is fundamental for developing countries, Internet is becoming a precious communication tool for more and more people. In spite of a lack of subventions, our website is already one of the most consulted in Europe, and also in Canada and Africa (200,000 connexions). It allows to edit numerous informations concerning AIDS, and other diseases on medical fields (particularly official and non official treatments) as well as other fields. By translating more systematically the informations of our site, we hope to develop even more our audience and reach a connexion number of at least 50,000 a month.
Summary The Internet web site of Positifs Association is a site devoted to information about HIV infection and AIDS fighting, on medical fields as well as others fields. Due to HIV infection polymorphism, this site also deals with other medical aspects. It is aimed to physicians but also to other persons, the epidemy having caused birth of numerous associations and created the wish of an unexpected high number of patients to acquire medical knowledge, to participate to medical decision in which they are involved, and even sometimes to participate to medical research. The Internet technology is particularly adapted to stock numerous informations instantaneously available from everywhere to favour communication, and this for a relatively low cost, especially adapted to developing countries. |
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