Since When Is the Expression of Fear and Ignorance a Basic American Right?
AIDS Denialists' Movie Does a Better Job in Spreading Fear Than an Insurance Company Lobbyist
By Thomas DeLorenzo
August 25, 2009
All these conversations about health care just keep me going back to two words -- fear and denial. Remove these two words, and we would easily have a health care system that could work for every single American. Keep these two words in the equation, and you have the quagmire that we are currently engaged in. Keep these two words in the conversation, and people will continue to get ill unnecessarily. Keep these two words in the conversation, and we all lose precious ground.
I can speak from personal experience about fear and denial. I held off treatment, rather seeking the truth about my own diagnosis until it was almost too late. I was caught up in my very own mix of fear and denial -- I was completely scared that people would abandon me, simply because I had HIV. I had to be dragged almost kicking and screaming to the hospital, to find out my news. When I had stabilized, my doctor told me that I would have lived only a few days had I stayed home. Fear, denial, and a strong dose of stubbornness would have won, and I would have lost. All of this because I was scared out of my mind and was willing to do absolutely anything, including putting myself at risk, in order to avoid the potential of being alone and isolated from the people I loved.
Recently, I dated a man who practiced his own version of fear and denial. When things seemed to be getting a bit more serious, I shared with him my status. I mistakenly assumed by his silence that he was negative. He did nothing to change my mind. I shared my fears with him about losing my health coverage, being too sick to care for myself, and other nightmares that come with being a person living with AIDS.
He never said a word.
One night he finally revealed his truth. He first said he had something to tell me, something that would probably cause me to kick him out. We had been dating for a few weeks at that point, and I could honestly not imagine what he could say that would do that. I would soon find out.
He bluntly stated that he was positive and had tested in 1997. My mind could not process this information at all. It was as if he was speaking in some foreign tongue. I instantly went through every single conversation we previously had in my head and kept coming up with the same conclusion -- how could I have missed a statement like that?
He explained further that he was part of the movement that did not believe HIV causes AIDS. Instead, AIDS was variety of diseases, and that the drugs and their toxicity levels that caused most of the suffering. My mind went blank. How could anyone possibly believe this nonsense in 2009? He shared with me that upon testing positive a friend told him about this other way of thinking -- that if you did not believe HIV causes AIDS, it did not. It was all started by this woman, Christine Maggiore, who had tested positive and was, herself, initially actively involved in the "standard" AIDS movement. However, she had come to question it when people were getting sicker because of the first round of anti-virals.
This man I was dating went on to tell me that he had never done anything after learning the initial news. He never got his t-cells checked, his basic blood counts explored, his viral load discovered. He simply just tested positive and hid this knowledge from pretty much everyone in his life. And now he was passing this information on to me, and wanted me to keep his secret.
After my head stopped spinning, I told him that I originally thought I was putting him in harm's way -- but now the tables had turned, and I was the one in harm's way. Without any knowledge of what was going on his system, he could easily have passed on a number of infections, including another version of HIV, however innocently, to me. His own version of fear and denial was poised to destroy my many years of hard work maintaining my own health status.
The first question I asked him what he possibly thinking of dating me -- me, who everyone knows is HIV positive? If he was living in such denial of the virus, why did he choose to allow someone as outspoken about his status into his life?
In the middle of our moment together, Christine Maggiore died. I had heard of her in passing from time to time, but as I never gave the "Denialist" movement much credence, I never took the time to get to know the players. However, the man I was dating knew her personally and was completely stunned to hear of her passing. The City said she was being treated for pneumonia, but her husband's hired hand said died of a toxic reaction to antibiotics. A few years before her own passing, Maggiore's six year old daughter died. In Los Angeles County, when a child death is under suspicion an autopsy is automatically ordered. Maggiore's own daughter died of AIDS related causes -- again with the Maggiore's own doctor insisting it was something completely different. Maggiore's could have easily kept her daughter alive if she had simply followed a drug regimen that would prevent mother to child transmission. Instead she allowed her own beliefs to shorten her daughter's life span considerably. Many people I know would have considered this murder. Others have done less to children and have found themselves inside a jail cell for a considerable amount of time. Maggiore was allowed to spread her toxic information freely.
One would think that with the advent of all of the drugs, the drops in death rates, the seemingly reduction of suffering of people with AIDS globally, beliefs such as Maggiore's would die like other snake oil treatments. One would be very wrong. The Denialist Movement is in strong force and picking up numbers, much like the Klu Klux Klan did in Post 9/11 America. They currently have a movie out -- House of Numbers -- a documentary that dismisses all of the currently held science in HIV and its treatments, continuing the conversation that HIV does not cause AIDS. Many prominent scientists were interviewed for this movie -- and quoted severely out of context. You see the one thing I learned quickly about scientists -- they are geeks, they are not social animals like us Hollywood types that come seemingly born with media training skills. They like to deal with their research and their data. They do not know how to work a camera -- therefore they can easily be caught of guard and may not be the best representative for their own cause. But that's why God gave us publicists.
This movie is currently on the circuit to potentially be considered for an Oscar nomination in the Best Documentary category. I heard of the movie when it was screening at the Nashville Film Festival. Upon contacting the festival, they stated their support of the movie and they believed it presented the facts in a fair and accurate manner. My response was simply, "Would you present a movie that stated that the Holocaust never occurred?" The Chairman of the Board of the Film Festival declared that this was not the same thing.
Millions of people have died globally, people continue to die in our own country, the Reagan administration did not acknowledge this disease until the end of his tenure and only then when it had become far to obvious to avoid, and this Film Festival decides that it was okay to present a movie filled with misinformation on such a sensitive public health issue -- and then decides that comparing it to the Holocaust is completely off base.
It will never, ever cease to amaze me how much ignorance runs rampant in this country. In 2009, we are still fighting the same battles we fought in 1985, except now we do so with seemingly better health. This movie just continues that fear that we fought so hard and thought were well behind us. It lives in a past that no longer exists and expands on it much farther than what is good for public health in general, and instead of providing an alternative theory for the AIDS crisis, it helps spread the AIDS crisis.
I think if we remove the strength that fear and denial have on the conversation regarding health care, we could move through this movement without a second thought. However, the insurance companies are in fear of losing their clout, and individuals are scared of paying for a disease of a person they never met, and elected officials are just plain scared of being without a title. Without someone leading us through this moment, beyond the fear and denial, we will not get to the promised land of health coverage for all.
I am not asking for you to pay for my own mistakes. I take responsibility for them each and every day. Part of this responsibility is writing this blog. Sharing my own experiences with you, so you do not make my mistakes is something I am compelled to do, for if I can get one person to question their own practices, then I know I have accomplished something. What I really want is an America where people can live truly free. When something as tiny as a virus can knock out your entire life's savings in a few months, we have a moral responsibility to help these people out. We need to give people a true safety net and that something was really there to hold onto instead of just false promises and misleading statements of hope. We gave it to the banks, and the auto industry, why can't we give it to people?
That guy I was dating, well that eventually came to an end. I finally asked myself the very same question I asked him -- why was someone as out with his status dating someone who was not taking responsibility for his own virus -- and it was then I left him.
Now I am seeing this very wonderful man, who owns up to his status with a fearsome responsibility that I admire each and every day. Instead of fear and denial, he gives me nothing but strength to continue my own fight. He, too, wishes for an America with health care for all. He could not make the activist in me happier when he becomes enraged from the politics that become all to easily entangled with this health care discussion. Somehow, in spite of all of the curve balls life has thrown me, I got lucky and found him. I could not cherish him more and thank the universe for bringing him into my life.
So to all of you in Washington, D.C., I ask this simple question. If you were left without the health care coverage that your positions bestow upon you, what would you do? Where would you go for your own health care? Who would take care of you if you got sick and could no longer care for yourself? Would you be able to wait in line at a local clinic for even the most basic of care? How would you cover the costs your prescriptions if you were not able to work? How would the very same fear and denial that each and every one of us goes through every day effect the very life that we currently depend on to lead us through this storm?
Think of all these questions when you opt to delay health care even longer for an American people that can use it now more than ever. Think of yourself without your Congress provided health care system, and then, and only then, cast your vote.
All of our lives are counting on it.
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For more information on HIV/AIDS denialism, take a look at TheBody.com's collection of articles on the topic.
Comment by: peter
Sat., Oct. 3, 2009 at 6:13 pm EDT
when you feel healthy you want to believe hiv is a harmless passenger virus, I got infected twice believing this. believe me there's plenty of people who will infect you out there.
Comment by: T.rex
Thu., Sep. 10, 2009 at 7:10 pm EDT
Let me get this straight... the author was unaware that his partner has been poz for over 10 years, not on meds, and presumably healthy and symptom free? What exactly is the problem there? Doesn't that corroborate the notion that the body can fight hiv just fine on its own?
The author uses terms like 'fear' and 'denial'. Well guess what bud? Dissidents can use those exact same terms right back at you. I truly feel the main reason people opt for meds is out of fear. The meds give them hope that they are doing 'something'. Whether that 'something' has been proven is moot. They trust their doctor's word, the person profitting from the choice.
I don't doubt the meds lower measurable viral load, but the question is,... who cares? Why not allow the body to give it a go? Studies show that CD4 count and viral load does not correlate to survival, anyway.
Comment by: Jason
Sat., Sep. 5, 2009 at 1:14 pm EDT
Two things: Information and opinion are just that. While I'd agree that many of the denialists are misinformed and/or misguided...to say that they do not have the right to speak their mind on whatever subject the deem necessary, and to whatever length they please smacks of censorship. Discussion and debate are necessary, even essential, in all subjects, IMHO. The consumer of this data, in other words each INDIVIDUAL, is responsible for investigating all data to the length and depth that they feel is sufficient, and then drawing their own conclusions for themselves and their respective lives. To borrow a term - Radical Self Reliance is key.
The other issue I would like to take issue with is that it seems like too many think that "safe" sex practices are just that - "safe." There is no "safe" sex. There is only "safer" sex, and maybe "unsafe" sex. Maybe a nitpick, but I think all too often "safe" sex is made out to be this panacea of STI impregnability. And, simply, it isn't.
Comment by: Jim
Sat., Sep. 5, 2009 at 8:05 am EDT
Fear is a very powerful tool. I didn't want to get tested because of fear. Nobody wants a test to come back positive for hiv, let alone cancer, or anything else. I didn't even have a family doctor. If you're presumed healthy and low income, you don't have money for that. My doctor could have suggested an hiv test a lot sooner if I had one. What do you pay for first, food or doctor bills? A person who makes $8 an hour cannot afford a health care or drug plan!
Comment by: JIMMY MACK
Fri., Sep. 4, 2009 at 11:45 pm EDT
Nice article Thomas, love your writing style. I'm living proof of all that you write about. I tested HIV+ in 1987, when there was nothing you could do, so I drank! When I got sober in 1992, I tried every form of "alternative" medicine out there, including living a healthy, sober live, but in 1997, I came down with KS as well as other AIDS defining illnesses and my T-cells were well below 200. Luckily the first of the "combination therapies" were being developed and I went on AZT/3TC, later adding Crixivan. The meds saved my live then and continue to do so as does my continued healthy sober lifestyle (see my blog on this website). But in 2003 while living in London, I decided to go off all my meds and within a year I wound up in the hospital with "Initial AIDS onslaught", my T-cell plummetting from over 800 to less than 200and my viral load went from undetectable to over 1 million! So, I'm back on my meds, have T-cells over 1,000 and look and feel pretty good for 52! In recent years, I lost 3 dear friend to AIDS (one my former husband) and each one of them had decided, against medical advice, to go off their HIV meds and they all died! So, I for one believe in the HIV to AIDS connection and will stay on my meds for now.
Comment by: Stephen Emery
Fri., Sep. 4, 2009 at 10:42 pm EDT
What a lot of people seem to forget is that Christine Maggiore, probably HIV positive by her own calculations for 21 years, survived without HIV meds a lot longer than many of my friends up here in Vancouver who took all the meds. Nobody really knows if she would have lived longer on HIV meds than without.
THough, I have friends who might live another 20 years having taken meds for 10 already. It's kind of too early to tell still isn't it?
Another friend of mine lived for 20 years with FULL BLOWN AIDS using Chinese herbal medicine only (Stephen McManus). Not bad considering the experts are saying 20 to 30 years for those on HAART. So if not doing meds is someone's (an adults) belief in long term survival then they are entitled to it without criticism - as long as they are informed and up-to-date.
I also think that people who do forgo conventional therapy should know about basic immunology in AIDS as Steve above did (alas Christine didn't). It's pretty hard to argue the well established immunology of AIDS around CD4s. Research couldn't be more solid.
And George's point is well taken. Yesterday's meds are not today's.But Matthew has the right to decide for himself what approach to take.
One thing I always check with scientific studies is the issue of selection bias. In the late 90s I saw too many of my sicker friends rejected from trials, those doing well selected instead and therefore the statistical study numbers gleaned from them are suspect.
Comment by: Matthew
Fri., Sep. 4, 2009 at 7:06 pm EDT
To all that are reading the comments here and actually have AIDS,you are in charge of your own bodies and you need to decide what is fact and what is opinion.HIV=AIDS is still a theory.Current HIV medications slow progression to AIDS in many people yet they die within 5-10 years from "non-HIV" related conditions.Oh,but this has nothing to do with the fact they had AIDS-Yeah right.People like George can call me ignorant and stupid but I am very observant and careful in my treatment choices.AIDS is a terminal illness yet people like George don't want to accept this fact so their only choice is to jump on the HIV treatment bandwagon(a form of denial).So who are the real denialist and scared people??Notice no HIV medicines can claim to cure you of AIDS they only slow the progression of a terminal illness.So,when some of us get better quality of life by choosing not to take certain meds and use alternatives like hypnotherapy or acupuncture along with newer less toxic meds people like George would say we are denialist.
I'm fine with my choices for me and everyone should do what's right for them even if it makes them a denialist.And yes George, I am aware of new research that if people stay on current med combos they could expect to live over 20 years now.
Comment by: Stephen
Fri., Sep. 4, 2009 at 4:33 am EDT
Actually I just read some interesting research which suggests that syphilis MIGHT be able to shed its DNA into viral size "round bodies" which may be possibly be reassembled into human host cells and cause disease, some of which could resemble AIDS and/or interact with HIV
[if I read this right - syphilis literature is a biatch ;] http://www1.biogema.de/WEK/312-Margulis-final.pdf
A kind of summary here which I find too wide an interpretation of the article:
The first thought I had when I read it was, "syphilis and Lyme in the form of virus size particles !? If true, there goes the argument that syphilis is too big to get through blood transfusion purification barriers" which was used to discount it as a cofactor in AIDS for hemophiliacs- but that's a stretch - that's not said in the article from what I see.
So strike my comments below that cofactorialism is dead. Some groups of scientists are still hammering away at syphilis + HIV.
Whether you agree with them or not; syphilis and HIV has always been tricky. The two are bad news together. Enough conventional research shows syphilis reactivates HIV and HIV causes syphilis progression to go faster and for some unknown reason -maybe lack of immune response- false syphilis negatives can occur in HIV + people.
This is very preliminary stuff, just a position paper. WHat is frustrating about this early, speculative syphilis research is that it is largely ignored and underfunded esp. in the USA. And really, how much funding will Russian scientists get? Or even a Canadian (John Scythes) or two.
So with all the anti-HIV meds in one's body, what happens with undetected syphilis causing illness too?
Comment by: george
Fri., Sep. 4, 2009 at 12:04 am EDT
Hey Matthew, glad to see that you are interested in what others think. But you are unfortunately quite ignorant. You say: "Blind trust of studies on drugs by the very companies that make them kills just as many if not more." Many of the best studies in HIV are NOT sponsored by pharma. The most famous which was published by NEJM http://content.nejm.org/cgi/content/full/355/22/2283 This study -- to the great surprise of the dedicated researchers-- demonstrated that HIV is quite dangerous to the human body and particularly the heart. HIV treatment helps avert these problems. Read the study, it will really show you science at its best! Or are you finished learning...HIV meds do not kill people. Africa is begging for them. Bill Gates has committed his time to helping people with HIV get meds. So has Clinton. Are you implying they are fools and you know better? Remember all drugs have toxicities, even tylenol!
Since thousands of studies (MANY many of which were government run or run by nonprofit entities--the entire hiv positive population of denmark, for instance, is in a clinical trial because they get free health care!) These thousands of trials have proven how amazingly effective HIV meds can be in the majority of the people who take them. AZT is used less and less, so it's not a current issue, check the stats. ATRIPLA is the number one selling drug. Isentress is becoming popular. You pretend to know so much, but know so little. When a fact is established: i.e., efficacy of HIV meds, you can say whatever silly thing you want, but genuine HIV/AIDS activists will laugh you out of the room. Never met them? Check this out and talk to these knowledgeable activists http://www.atac-usa.org Hopefully you're a long term nonprogressor and so can indulge in this nonsense. Otherwise I would recommend that you check your CD4 count and if it's under 350 and you're not on treatment, you are at risk. That's simple science, not opinion. We've got EVIDENCE. We've got the data and that is what informs practice. Don't end up like Maggoire and her daughter and Kelly Jon Landis who didn't bother getting treatment and died of lymphoma...it's not the AIDS...it's the low CD4 count that's dangerous...
Comment by: Matthew
Thu., Sep. 3, 2009 at 10:14 pm EDT
First I have AIDS and am very educated about the history of AIDS in it's varied and redefined forms.
There are not thousands of tests that prove HIV causes AIDS.Current meds are working better to control HIV.Sorry to say AZT is still being used in current treatments and if you aren't aware of this it is you that don't keep current.You don't know me and I thankfully don't intend to know you.I do object to you and Thomas claiming it is me and others that ask people to question the science that are causing people to die.Blind trust of studies on drugs by the very companies that make them kills just as many if not more.I'm happy I educate people to get the facts and think for themselves and don't sit and point fingers at people that disagree with me and call them murderers.I pity those that have to be right and are so scared of dying if they don't listen to the doctor.Oh,and George shut up this is OPINION not medicine-enjoy thinking your right.
Comment by: Stephen
Thu., Sep. 3, 2009 at 3:47 am EDT
I used to be a cofactorialist in the 90s (before 97) when I read Dr. Root Bernstein's book Rethinking AIDS in thinking that HIV was important to AIDS but only one of a number of pathogens that caused AIDS. So as a community journalist for a gay mag up here I presented work on HHV6A, syphilis, mycoplasma etc to explore those ideas. It was pretty easy to think you were on the right track when the discoverer of HIV himself, Dr. Luc Monatgnier stated quite flatly at the Vancouver AIDS conference in 96 that HIV alone needed another cofactor to cause AIDS - he though it was mycoplasma. Then Robert Gallo publically shot him down. But Gallo was accused of "stealing" the virus.
Eventually, the protease inhibitors started to work and most of us cofactorialists accepted that HIV was enough to cause AIDS and its control was enough to stop it. It was our right to question, within reason, and medical science proved HIV the cause.
However, important research directions were opened up to analyze the role of HHV6 in KS and the interactions of syphilis and HIV - and now interactions between HepC and HIV. So I think the cofactorialist folk had a role to play that helped rather than hurt people. We never said "don't take HIV meds", we DID say try alternative therapies in addition to HIV meds. We never said HIV did not exist, we never said that you cannot get AIDS through sex or sharing needles etc.
But there was louder more strident sometimes violent camp - those Duesbergites who were so radical they did not believe that HIV caused AIDS at all, that sex wasn't responsible for AIDS, that one could breast-feed no problem. These folks were called Act-UP SanFrancisco and HEAL. They knew little about immunology.
I argued with Christine Maggiore at a showing of her husband's movie in Vancouver in 2004 that, yes, a CD4 count lower than 200 IS NOT normal. Both Christine and her daughter ultimately died of AIDS.
Comment by: Dave
Sun., Aug. 30, 2009 at 4:23 pm EDT
I agree that Hiv does cause Aids...I know for a fact because I had HIV since 1987 and full blown aids in 2005 all because I never got tested or got on meds, and yes the meds do work, sure they suck with the side effects, blurred vision, nightmares, nightsweats, diarrea...etc, but I'm here and if it weren't for the meds I'd be dead cut and dry
Comment by: thomas delorenzo
(los angeles, ca)
Sat., Aug. 29, 2009 at 5:27 pm EDT
thank you george.
Comment by: Tom
Sat., Aug. 29, 2009 at 10:26 am EDT
Hmmmm. I think the author of this piece needs to "get a grip".....maybe a bit of counseling. All medical treatment done in this country is only done with the consent of the patient (or their legal representative). If a person decides to forego treatment that is their choice. If a person is so stupid that they think a person who has choosen to not be treated for HIV is a health threat to them in a casual setting, what are they doing writing a piece for "The Body" ? Was it more than "casual" and if so was it "safe"? That could be the only legitimate complaint if there had been no disclosure. Why has this news group accepted this "blather"?
All I can say is to the author......GET OVER IT. You're "poz" just like the vast majority of people that read this news service. Just because you were in "denial" for awhile doesn't mean that because you've accepted the fact everyone else must. Life is a journey. This other person hasn't reached that point yet. They are just as entitled to their "denial" as you are to your "acceptance".
22 years poz and off meds (and feeling better for it)
Comment by: George
Sat., Aug. 29, 2009 at 5:49 am EDT
Hi Matthew: It seems as if you have not kept up with the science. You see it is a scientific fact, proven by thousands of studies that HIV medications work astonishingly well.
You say you are NOT a denialist, but then you say: "the medical lies by mainstream that HIV meds are all that work to treat HIV and they are proven and SCARE newly diagnosed to use meds or you will die is also wrong." WHAT??? Before you speak, you should learn about the treatment recommendations for HIV. Newly diagnosed people with strong cd4 counts and low viral loads are NOT given HIV medications. Also "medical lies" what lies? Are you saying that the dedicated men and women working in HIV research are somehow all not to be trusted??? They are just practicing evidence-based medicine. We figured out that HIV treatment worked after researchers did double blinded randomized clinical trials. That's the gold standard in medicine. It's how we figure out things. That's how we know how to treat heart disease. That's how we know that folic acid is an important supplement for pregnant women or that vitamin D seems to be important for Northerners. or that daily exercise will keep us healthy. We know that HIV medicines are all that work cause we TRIED other stuff and it DIDN'T WORK!!!! Back in the early 1980s, activists tried EVERYTHING! AND THEY DIED on alternative medicines! These were people who NEVER took AZT (I knew many of them!) NOT until combination hiv therapy came around in 1996 did people have a chance. And your mention of AZT is historical. It's not commonly used now, so mentioning it means you're reading Duesberg -- a homophobic denialist!! and he's been disproven and laughed out of town. Matthew, you are ridiculously out of touch. There is not one AIDS activist in ACT-UP or TAG or Project Inform (all respected activist groups) who doesn't believe that HIV medicines are effective and have saved millions. Their goal is to get it out to the developing world and to U.S. inner cities where paranoi and conspiracy theories like your idiocy stop people from getting treatment. So shut up and get a science education cause you're just embarrassing yourself with your ignorance. And you are irresponsibly talking about something you know nothing about. This is MEDICINE, not opinion. People die listening to people like you. So get some integrity and shut up till you get educated about current HIV medicine.
Comment by: Matthew
Fri., Aug. 28, 2009 at 8:55 pm EDT
STOP lumping people that believe HIV is a co- factor to AIDS as denilists.There IS plenty of proof that HIV is not the sole cause of AIDS.I'm tired of being told I am ignorant or nieve or gullible because I don't trust the proven science behind HIV meds.HIV meds are NOT proven.AIDS deaths were droping BEFORE widespread use.I know newer HIV meds are safer but early meds were killing people and mainstream medical still DENIES that truth.There is denial and truth streaching by all groups.Many so called denialists are so because of lies about AZT and how many people died from AZT poisoning in the early days.Mainstream pharmacies also broke the promise to alternative medicine to work for fair testing of herbal formulas to take with expensive HIV meds.Now standard claim is that HIV meds are working to keep people alive so only use them and if you choose to treat HIV and AIDS naturally you are in denial of how great the meds are in treating HIV.I'm NOT a denialist but to believe the medical lies by mainstream that HIV meds are all that work to treat HIV and they are proven and SCARE newly diagnosed to use meds or you will die is also wrong.I know just as many or more people died in the early days of AIDS by toxic treatment as are dying if one chooses to use natural methods of treatment.
Comment by: Henry
Fri., Aug. 28, 2009 at 1:00 pm EDT
Thomas, while I wholeheartedly disagree with AIDS denialists, I was perplexed by this statement you made:
"he could easily have passed on a number of infections, including another version of HIV, however innocently, to me."
Weren't you practicing safe sex with him? If you were then the chances of him passing his virus to you are slim to none.
Comment by: Cecelia
Fri., Aug. 28, 2009 at 6:45 am EDT
The disease makes one go through a myriad of feelings - denial, fear of rejection, losing the love and affection of loved ones. to be completely ignorant of the magnitude of the effects of this disease may be a personal decision but one should feel a certain responsibility towards protecting others. I have known about my status for about a year now and because I do not want to disclose it yet, I choose certain activities I carry out or do with close friends, family and of course male friends. That, I feel, is my responsibility - to keep them away from harm's way.
Comment by: Seth Kalichman
Thu., Aug. 27, 2009 at 11:55 pm EDT
Thomas DeLorenzo is such an important voice! AIDS Denialism is killing people. Everyone has the right to make informed health decisions. The myths and misinformation spread by AIDS Deniers is nothing less than criminal. Thank you for posting this great article and thanks to Thomas DeLorenzo for his courage to speak out on AIDS Denialism!
Comment by: rob b
(San Francisco, CA)
Thu., Aug. 27, 2009 at 9:56 pm EDT
AIDS Denial feeds on ignorance, a good reason for all of us to have our facts and stats in good order. Denialists can run from conspiracy theorists to new-age spiritual self healers, and animal rights advocates, frequently all. The problem is that these folks spread this philosophy as if it were a cancer. Who would believe it? Others who were recently diagnosed, and are emotionally vulnerable, need a support network. Angry people.
Denialists used to shout down speakers at meetings, often attacking others physically. The resemblance to the "teabaggers" at health care Town Hall meetings has not gone unnoticed.
Here in SF, most of the core group (ACT-UP SF) had died (of what, I wonder?).
There should be a group available to these people. I don't wish death on anyone, but the denialists disinformation can kill.
Comment by: michael sahba
(las vegas, NV)
Thu., Aug. 27, 2009 at 8:29 pm EDT
any news on lifting the ban on legal immigration and visa permits into the US for foreign nationals?..i am waiting to see if that hurdle clears since my case for permanent residency is withheld and i have to renew my driver's license every yr along with my work permit that is my visa status upon the work permit's yearly expiration!....another costly and insane effect of the ban on HIV foreigners. 340 dollars for work permit renewal and 35 dollars for the driver's license every yr!
Comment by: bob newey
Thu., Aug. 27, 2009 at 8:18 pm EDT
Being diagnosed in 1984, I have experienced many cases of the sort described here and when I find out the facts about these individual's denial, when I was so honest, I feel insulted and depressed. It is a situation that has no cure I think.
Comment by: Michael
Thu., Aug. 27, 2009 at 3:55 pm EDT
Thank you for your comments. This movement is dangerous, but I find this sentence in your blog strange "Without any knowledge of what was going on his system, he could easily have passed on a number of infections, including another version of HIV, however innocently, to me. His own version of fear and denial was poised to destroy my many years of hard work maintaining my own health status." Your statement implies that you and this person were involoved in practices that would put you at risk for co-infection. As an HIV+ person with an interested in health preservation wouldn't customary safe sex practices have made this concern all but pointless? In a perfect world, we would protect each other but it's not a perfect world, so we are each responsible for ensuring our own health and safety, particularly in light of the brevity of your relationship. As an HIV+ person it is a lesson I learned a little too late, but learned nonetheless and try to share with others.
Comment by: Mike A
Thu., Aug. 27, 2009 at 11:29 am EDT
What a wonderful description of how we can fall into fear and ignorance. How we can find ourselves faced with someone we think we know and we really don't. You are human and you keep learning. Bravo!
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Who Knew So Few T Cells Could Accomplish So Much?
Until just a few years ago, Thomas DeLorenzo never would have believed he could become an HIV/AIDS activist. Before he was "officially" diagnosed with HIV in 2001 -- with 60 T cells and a viral load of 300,000 -- DeLorenzo had been living in denial. And until 2006, he was too busy dealing with the many side effects of his own HIV meds to think about helping anyone else. Then he and his doctors finally figured out the perfect med combo -- and, finally, DeLorenzo felt that he actually had a future.
DeLorenzo lives in Los Angeles with his partner and is currently attending law school at Southwestern University School of Law. His career goals include making sure all Americans have access to adequate and affordable health care. Prior to law school, DeLorenzo worked as a publicist in the entertainment industry, representing many award-winning celebrities.
In 2006, The New York Times named him an Unsung Hero in the Fight Against HIV/AIDS for his Christmas Goody Bag Project for the residents of the San Antonio AIDS Foundation Hospice. In 2008, DeLorenzo was the San Antonio AIDS Foundation's Angel of the Year. DeLorenzo's alma mater, Hofstra University, named him Alumnus of the Month in August 2009 for his work on behalf of people living with HIV/AIDS. DeLorenzo was recently appointed to the City of West Hollywood's Disabilities Advisory Board.
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