Personal Business: HEALTH AFTER 40
THE MEDICAL HOT LINE IN YOUR PC
In 1990, Gary Schine was diagnosed with hairy cell leukemia, a rare and supposedly incurable cancer. Schine, then 38, refused to accept his oncologist's prognosis at face value. Instead, the writer and consultant researched the disease in the library and learned of clinical trials on an experimental drug known as 2-CDA. Schine became one of the first to receive treatment with the drug. Today, he jogs two miles a day and is by all indications in perfect health.
The episode helped persuade him to start Schine On-Line Services, a medical search firm in Providence. For $110 to $189, Schine keeps clients suffering from a variety of illnesses up to date by poring through numerous databases on the Information Superhighway and presenting the findings. Schine seeks out literature in medical journals and the latest developments at health conferences. Using a computer, he can search in just over an hour what it took him two weeks to uncover more than four years ago.
SUPPORT GROUPS. But you don't have to be a professional researcher to ferret out health data online. In fact, anyone equipped with a PC and modem can mine a wealth of diverse medical, health, and fitness information. Although a good deal is med-speak aimed at health professionals, you can find lots of rich material that laypeople can understand. The information may be of particular value to aging baby boomers as they become more obsessed with their declining bodies.
For starters, the major online services such as America Online, CompuServe, and Prodigy provide health news and offer medical and health support forums where users can tap into libraries, exchange messages, and commiserate in real time about common problems. The United Cerebral Palsy Assns. and National Multiple Sclerosis Society are among the organizations represented on AOL. Prodigy features general articles on wellness, exercise, sports, and other subjects in its Health Topics section.
CompuServe has especially meaty offerings--although you'll sometimes pay hefty charges of up to $24 an hour above the service's regular connect charges. Besides dedicated cancer, diabetes, muscular dystrophy, and holistic health forums, CompuServe members can tap into the Physicians Data Query from the National Cancer Institute, which includes information on cancer types and treatments. The Rare Disease Database offers resources and drugs for "orphan" diseases affecting fewer than 200,000 Americans. In Knowledge Index, you can find the full text from more than 50,000 journals. You can also reach Medline, a biomedical database with more than 7 million references and abstracts culled from some 4,000 medical journals by the National Library of Medicine.
Those without a CompuServe membership can still tap into Medline. One way is with $30 software called Grateful Med, available from National Technical Information Service in Springfield, Va. (800 423-9255). Another is via PaperChase, a service of Boston's Beth Israel Hospital. You can reach PaperChase by phoning 800 722-2075 or using the Internet tool "Telnet," a method of connecting to a remote computer on the Net (Telnet to pch.bih.harvard.edu). PaperChase can also connect you to separate AIDS, health-planning, and cancer databases. Searches can add up, though: Rates are $23 per hour.
Hundreds of specialized electronic bulletin boards cover the vast medical landscape as well. The Black Bag BBS in Collegeville, Pa., contains the latest news from the Food & Drug Administration and on AIDS treatments, among others. Among Black Bag's topic areas are smoking and cancer, and pediatrics. In the smoking section, for example, you can read tips on quitting. People who dial in can download a list of other health-related bulletin boards, compiled and updated by Dr. Edward Del Grosso, a radiologist who checks out each board he includes. You can also get the list through the Internet by sending E-mail `o email@example.com. Or check the January issue of Boardwatch Magazine (800 933-6038).
SHROUD OF PRIVACY. Not surprisingly, the Internet is a vast reservoir for medical and fitness information. In January, the Centers for Disease Control & Prevention announced the availability of Morbidity and Mortality Weekly Report and other CDC publications online. Written for medical professionals, MMWR reported the first AIDS cases in 1981 and the outbreaks of Legionnaires' disease and hantavirus. You can find the reports by sending E-mail to firstname.lastname@example.org or by using a World Wide Web browser such as Mosaic to connect to the CDC. Meanwhile, the National Cancer Institute is among the outfits putting together a World Wide Web server over the Internet.
Why are so many people seeking online medical counsel? For one thing, it's smart consumerism. Many patients believe their doctors are not always abreast of the latest medical literature. By uncovering a new piece of research or discussing symptoms with others who have a common experience, newly informed patients can go back to their doctors and ask: "Hey, what about this?" Many people who log onto the National Institutes of Health Information Center, explains system operator Dennis Rodrigues, "didn't feel their physician had spent enough time with them on their problem." The board is reachable by modem at 800 644-2271.
Given its far-reaching scope, the online community provides patients with rare conditions a link to others who share their disorders. Patients with more common maladies can also gain confidence by chatting with people who have been through it all before. Says one woman who went ahead with knee surgery after comparing notes with online compatriots: "The thing I like is that [the online environment] gives the patient more control."
By its very nature, cyberspace provides a shroud of privacy for those who don't want to go public with their illnesses. In fact, the doctors who run the HealthSource BBS in Tampa ask questioners who want to remain anonymous to type ANON when they log on. HealthSource's modem number is 813 979-7307.
But just as others don't know who you are, you have no way to determine the credentials or expertise of the persons providing medical advice. To some extent, bulletin boards and online services are self-policed. But those surfing the boards would be wise to pay attention to the disclaimers posted when you sign on. You may encounter well-intentioned people who pass along wrong information. Others may be trying to sell you something.
"POND SCUM." Ira Milner, a registered dietitian, recently checked out some of the forums on several online services for the Tufts University Diet & Nutrition Letter. Milner uncovered a number
of claims he maintains are spurious. In one CompuServe forum, individuals were trumpeting the benefits of an alleged appetite suppressant containing an ingredient that Milner claims is essentially "pond scum that floats on the surface of lakes...and has no value as a weight-loss aid or treatment for any malady." CompuServe does not police its forums, a spokeswoman says, but if it
becomes aware of a problem, it will launch an investigation.
In another incident, Milner found online bulletin board users stating that vitamins A, C, E, and B13 "have been found to be effective in halting and even reversing multiple sclerosis." The Tufts letter quotes Dr. Stephen Barrett, a health fraud expert, who calls the vitamin claim "utter nonsense" and notes there is no such thing as vitamin B13. The lesson is clear: Whether in cyberspace or the doctor's office, it's wise to seek a second opinion.
Medical Advice In Cyberspace
AMERICA ONLINE 800 827-6364. Health & Medical Chat forum has 23 support groups. Cerebral palsy, multiple sclerosis, and mental-illness organizations are represented.
BLACK BAG BBS 610 454-7396.* News and message boards on a variety of medical topics. Features disease and symptoms database. You can also download lists of other health-related boards.
CENTERS FOR DISEASE CONTROL & PREVENTION 404 639-3534. Offers the respected and technical Morbidity & Mortality Weekly Report and other CDC publications over the Internet.
COMPUSERVE 800 848-8199. Serves as a gateway to numerous databases including Medline, Rare Disease Database, and National Cancer Institute's Physician Data Query. Many forums.
MEDLINE 800 272-4787. Mammoth database from the National Library of Medicine houses more than 7 million references and abstracts from 4,000 medical journals used by doctors and laypeople.
PRODIGY 800 776-3449. Has primers and other articles under Health Topics section. Also features Consumer Reports health-related stories and separate health and medical bulletin boards.
*Modem numberEdward Baig