Chat transcript: AIDS and other scares at CDC

May 11, 1999
Web posted at: 10:12 a.m. EDT (1412 GMT)

(CNN) -- Have you heard about the cancer-causing shampoo? Or the epidemic of multiple sclerosis and lupus caused by artificial sweetener? Or the kidney thieves who remove organs from people who get drunk at parties?

None of these stories are true. But all of these fictitious health threats have been spread over the Internet and through e-mail.

These rumors are often taken quite seriously. An e-mail claiming that HIV-infected needles were being found in telephone coin returns and movie theaters generated so many inquiries to the Centers for Disease Control and Prevention that the CDC discredited the story on its own Web site.

The following is an edited transcript of a chat with Brenda Garza, technical director of the CDC National AIDS hot line, held on April 9, 1999, about Internet health scares.

Chat Participant: Tell us about the recent Internet health scare on HIV needles.

Brenda Garza: We began to hear about hundreds of e-mails about the needles being left in phone booths and other places. We began to try and find out more information about those stories, which appear to be rumors.

Chat Participant: I've heard those rumors about the needles in phone booths but assumed they were merely "urban legend."

Brenda Garza: Yes, they mostly appear to be. We are aware of one incident where someone was stuck with an insulin needle in a phone booth, but that's the only one we know about.

Chat Participant: Are there a lot of rumors out there based on a misunderstanding of the means of transmission of HIV?

Brenda Garza: Yes, there have been many rumors over the years, but the Internet has increased the capacity for rumors to get to more people.

Chat Participant: Ms. Garza, what sources do you consider to be reputable: health care professionals only? Or do you trust the phone calls of "average folks" to be accurate?

Brenda Garza: We would attempt to investigate the facts surrounding a story, such as speaking with a physician who may have had a person come in who reported such a story. We would, of course, listen to the general public as well.

Chat Participant: What is the biggest fear of the average citizen who calls in?

Brenda Garza: The biggest fear seems to be worry over transmission of HIV from casual contact.

Chat Participant: On average, how many phone calls a day does the CDC field?

Brenda Garza: Our AIDS hot line (800-342-2437) receives nearly 1 million a year. We at CDC receive thousands of calls at our location as well.

Chat Participant: How can we be sure that this will not happen? I mean, if a father will inject his own child, who's to say that needles won't be left in these places?

Brenda Garza: Unfortunately, there are people out there who do terrible things that turn out to be real. In the case of the needles in the phone booths, they are mostly rumors. That does not mean that it could not happen.

Chat Participant: I'm surprised that some joker hasn't heard the rumors, then stuck a few needles into phone booth coin returns, just to be "cute."

Brenda Garza: There are copycats for everything.

Chat Participant: In regard to the recent scare, how did you determine there was a real Internet health scare about HIV needles?

Brenda Garza: We received only one real call that had aspects that we were able to check out. That doesn't mean that there aren't others, but the Internet stories, which changed somewhat, were not true.

Chat Participant: The CDC posted a response to the needle rumor on its Web site. How often do you have to post such a story in order to combat rumors?

Brenda Garza: This is the first time that we have used the Internet to dispel such a rumor. In the past, we have sent letters to people who have inquired about rumors or responded over the phone.

Chat Participant: How has the CDC dispelled false rumors in the past? And does CDC plan to use the Internet more?

Brenda Garza: We believe that our statement on the Internet did help to respond. We think it is an excellent avenue for getting out factual information. We include other information on our Web site as well, www:cdc.gov/hiv.

Chat Participant: Are these stories true?

Brenda Garza: We know of one incident, but the Internet rumors appear to be just that -- rumors.

Chat Participant: How much damage do spams the likes of "Little Susie is dying of AIDS. For every person who receives this e-mail she'll receive one cent" cause?

Brenda Garza: I'm not sure how much "damage" it causes, but it certainly makes it difficult for real causes to be heard.

Chat Participant: What do you think of the latest protocol for cmv retinitis -- using a ganciclovir implant as well as oral therapy?

Brenda Garza: I'm not familiar with that protocol. It is probably being done by NIH. You could call our treatment hot line, 1-800-448-0440, for more information.

Chat Participant: Which sections of the American populace seem least informed about the facts of AIDS?

Brenda Garza: Probably the rural areas and disadvantaged populations.

Chat Participant: Is the spread of AIDS coming to be under control? I haven't heard a lot about it lately.

Brenda Garza: There is a lot of complacency. While treatments have helped, we continue to see new cases of HIV on the increase in certain groups of people. Again, our hot line number is 800-342-2437, if you have questions you may think of later.

Chat Participant: Are you still getting calls on the Internet HIV needles scare?

Brenda Garza: Yes, we are. The stories seem to be circulating to smaller towns.

Chat Participant: Do you think the politicization of HIV has done more harm than good, preventing health care officials from treating the disease like they used to treat public health hazards, i.e., TB, diphtheria, typhoid, etc?

Brenda Garza: I think activism has done more good than harm to bring attention to the public of a terrible tragedy of not only disease, but stigmatization in our country.

Chat Participant: It does seem to be widely spread amongst IV drug users. Do you believe that to be the biggest source of the spread of HIV/AIDS?

Brenda Garza: Actually that is a major problem, and sexual transmission as well. Injection drug use accounts for 26 percent of the AIDS cases among adults/adolescents.

Chat Participant: Does the CDC try to trace the source of Internet health scares?

Brenda Garza: This is the first time we have had this happen, and yes, we did attempt that.

Chat Participant: What are the most common (albeit ludicrous) misconceptions you've heard from people on the hot line?

Brenda Garza: The origin of AIDS is probably one of the biggest misperceptions.

Chat Participant: What accounts for the most?

Brenda Garza: Men who have sex with men accounts for 48 percent of AIDS cases.

Chat Participant: I have heard the numbers are down in many sectors, yet up in others. Who is most at risk now?

Brenda Garza: Those most at risk are younger, minorities and women.

Chat Participant: It is my understanding that AIDS is a disease which has existed in certain animal and sparse human populations since the late 1940s.

Brenda Garza: We do believe it has been around for many, many years in other countries and then came to the U.S. in the mid- to late '70s.

Chat Participant: Don't you think the quarantining of drug addicts will become necessary to help slow the spread of HIV? Unfortunately, this group of people can't control their drug habits.

Brenda Garza: Quarantine would not be the answer. Drug addiction is a disease, and there is help for people who need it. In order to quarantine, you would have to mandatorily test everyone and then select out those with HIV. This would not work to prevent HIV.

Chat Participant: Now that they have pinpointed the area it started, is a cure going to follow?

Brenda Garza: There are vaccines under way and already being used in human subjects. We can only hope one will work very soon.

Chat Participant: Do you think it is possible to protect society from irresponsible social

Brenda Garza: No.

Chat Participant: I remember the days when we thought we could spread AIDS by hugging. Then Princess Diana changed how we thought. Now we think we can get it by needles in telephone booths. How far have we actually come?

Brenda Garza: I think some people still have a long way to go.

Chat Participant: What is the current death toll from AIDS worldwide?

Brenda Garza: There are many millions infected worldwide. No one really knows how many have died in the world, but it has devastated many African countries. We are lucky that we have good treatments available in the U.S.

Chat Participant: How big of a team does the CDC have on the hot line, and how long did it take for you to decide to respond to the HIV scare?

Brenda Garza: The hot line employs about 150 specialists to respond to questions. They operate it 24 hours, 7 days a week.

Chat Participant: Are they all going to get AIDS, or do they just carry the virus?

Brenda Garza: Eventually, most people with HIV in other countries will develop AIDS.

Chat Participant: If 48 percent of AIDS cases are caused by male to male sex, then how can we lower that?

Brenda Garza: It takes behavior change, which many work at.

Chat Participant: How close are we really to a cure for AIDS?

Brenda Garza: Probably a few years away before a working vaccine will be available. Treatments may help to make HIV a manageable disease, but a real cure may be many, many years away.

Brenda Garza: Again, our Web site is www:cdc.gov/hiv if you would like to visit.

Chat Participant: There is a difference in HIV-positive and full-blown AIDS, right?

Brenda Garza: Yes.

Chat Participant: What's being done in the countries like Africa to stop the spread?

Brenda Garza: Even though there are many committed people working in those countries, their standards of medical care are far below what we have here. Countries get help from many organizations.

Chat Participant: Is the consensus among HIV researchers that AIDS will be considered a chronic disease that can be managed like HTN, diabetes, CHF, etc.?

Brenda Garza: That is one hopeful consensus.

Chat Participant: Is your hot line available only in English?

Brenda Garza: We have Spanish, 800-344-SIDA, and TTY 800-243-7889.

Chat Participant: Do people who are HIV-positive always go into AIDS, or can that be contained now?

Brenda Garza: It used to be 99 percent would develop AIDS within two years. We think that it's more variable now because of better treatments.

Chat Participant: What kinds of issues does the hot line deal with ?

Brenda Garza: They respond to mostly questions about risks, transmission, where to go for testing, and other issues.

Chat Participant: What kind of treatments?

Brenda Garza: The treatments that include protease inhibitors have been producing good results for most people on them.

Chat Participant: Is enough money available for AIDS research?

Brenda Garza: There is never enough money.

Chat Participant: Are the different countries coordinating their research better, or are they still working independently?

Brenda Garza: Usually, countries coordinate with the UNAIDS program, USAID, NIH, CDC and others.

Chat Participant: What kind of advice do you give to callers? Do you point them to government agencies, health centers, or give advice?

Brenda Garza: We have an extensive referral database that can refer people to what they need through the country.

Chat Participant: Is the hot line for just AIDS? Are there other CDC hot lines?

Brenda Garza: We have an STD hot line and an immunization hot line as well.

Chat Participant: What's the volume of calls the CDC hot lines receive?

Brenda Garza: The AIDS hot line gets nearly 1 million calls a year and handles group calls as well.

Chat Participant: There is much talk about using "safe sex," i.e., condoms, but even that puts people at risk, doesn't it?

Brenda Garza: If you are going to have sex and your partner's status is unknown, it is better to use a condom. When they are used the right way, every time, they can help protect against HIV and other STDs.

Chat Participant: I heard a cure was announced in South Africa. How true is this, and how does it work?

Brenda Garza: We hear about many cures but know of none that really work. We receive many cures through the mail as well.

Chat Participant: Is it not legally wrong to claim to have a cure when you really do not have one?

Brenda Garza: There are people who investigate those claims, and if they are being used on someone, it can be.

Chat Participant: Could you describe what takes place during the final stages of AIDS?

Brenda Garza: Most people in the final stages are sick because of various "opportunistic infections" such as TB, certain pneumonias, etc. That is what kills someone.

Chat Participant: When people are tested for HIV/AIDS and the results come back negative, does that mean that they don't have it, or that perhaps that it has not become pronounced, for lack of a better way to put it?

Brenda Garza: It could mean that they have tested too early. Most people develop detectable antibodies within three months if they are really infected.

Chat Participant: How often should an "at risk" person be tested for HIV/AIDS (I consider anyone sexually active at risk)?

Brenda Garza: If someone continues to be at risk, they should get tested at least every six months. It is better to remain not at risk.

Chat Participant: Wondering about well-known cases, like Magic Johnson -- it seems that he has the disease under control. How is that? Is he taking the infamous "cocktail"?

Brenda Garza: The "cocktails" have worked for many people with HIV to delay progression of HIV.

Chat Participant: Is the cocktail failing?

Brenda Garza: It is still too early to tell. There are concerns about resistance because people don't take it properly or off and on, etc.

Chat Participant: Is there independent ongoing research of AIDS in Atlanta? Where is most of the AIDS research being conducted?

Brenda Garza: We do research at CDC in Atlanta. NIH performs research. There are also independent organizations and drug companies who do research as well. There are different levels of research, so I couldn't say where most of it is being done.

Chat Participant: Is anything being done to lower the cost of AIDS drugs to those who need them?

Brenda Garza: The federal government does provide funding for people who can't afford the drugs.

Chat Participant: Do you honestly think there could be a cure in the near future? I understand that HIV is a viral disease and most viral diseases do not have a cure. Take the case of the common cold.

Brenda Garza: There are vaccines that provide help with some viruses, but because of the varying strains of HIV, a "real cure" would be difficult.

Chat Participant: I'm wondering, statistically, which is the fastest growing "population" of HIV-positive patients?

Brenda Garza: Probably women, minorities and young people.

Chat Participant: What damage has AIDS had on the health care system?

Brenda Garza: The health care system has been devastated in some areas. That is why government funding to help is critical.

Chat Participant: Does the disease mutate faster than they can find a cure?

Brenda Garza: Scientists are finding out more and more about the makeup of the virus; this is faster than some have been in the past.

Chat Participant: I would like to invite everyone to check out our Web site www.cdc.gov/hiv. Remember that prevention of HIV is key to controlling the epidemic! Stay safe. There are a variety of publications available by contacting the hot line, 800-342-2437.

Chat Participant: Thanks, Brenda of the CDC, for joining us today.

Brenda Garza: Thank all of you for joining in. Visit our chat calendar for a complete list of future events and past chat transcripts.