Open Letter to The Oprah Winfrey Show-Response to HIV show.

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Dear Oprah Producers,

My name is Jack Mackenroth. You may remember me from season four of Project Runway. I was the designer who was open about my positive HIV status on the show and am very active in the HIV community around the country. I was very excited to watch the show about the women who were infected with HIV unknowingly because Oprah has the ability to influence the country in such a positive way. Unfortunately, after the show I was left feeling disappointed and angry about the misleading information provided and the lack of follow up regarding treatment and how the disease is transmitted. It really offered no hope for the over 1 million people who are living with HIV in this country—not to mention the millions of people all over the world.

My first issue with the show was that several of the women on the panel chose to wear disguises. I understand that there is a huge stigma about being HIV positive but if they wanted to remain anonymous then they should not have gone on national television! By appearing in disguise they only reaffirmed the idea that being honest and open about having HIV is NOT OK. That was a huge disservice to the HIV community. By not being open and honest they sent the message that people with HIV should hide and keep it a secret, which only adds to the stigma of living with the disease. Would someone with cancer wear a disguise? If we are taught that HIV is shameful then how can we expect people to willingly go get tested?

I had another issue about the vilification of HIV+ people. I understand that the man who knowingly had unprotected sex with these women should be punished but I also think referring to an HIV positive person as a “loaded gun” is an inappropriate analogy. Many of us take the necessary precautions and maintain an undetectable viral load in our bloodstream, which makes us much less contagious. However there was no mention of this by the doctor and it left the audience with the idea that every HIV+ person is a lethal weapon. It’s a totally inaccurate, negative depiction.

I have to say I was shocked when two of the women mentioned that their daughters became suspicious because they told them not to use their toothbrushes or razors and even their mascara. Now I am not a doctor but I know you cannot get HIV by sharing a toothbrush or a mascara brush and I have never heard of even one case of someone contracting HIV by sharing a razor. I was appalled that the doctor in the audience said that not sharing razors was not an unreasonable safety precaution. It’s this kind of faulty information that fuels mass hysteria. People believe what they hear on your show and it’s just a tiny step away from not sharing eating utensils or toilet seats. In one minute you basically erased years of education about how the virus is transmitted and sent a national message that we, as HIV positive people are pariahs and hyper-contagious.

Oprah did make the important point that ANYONE can get HIV and that these women did not fit the profile of a high-risk person. However I feel like these women were portrayed a bit too much like victims. The woman in the audience who stood up and said the bit about always being responsible for using condoms was right. Each individual can only protect himself or herself. I understand that these women were lulled into a false sense of security and that they all said they would do it differently if they could do it over but at the end of the day we can only control our own actions. I have received countless emails from people who were infected because their partner either lied or didn’t really know their HIV+ status.

The biggest problem I had with the show was the lack of follow up information regarding safer sex practices and treatment options. Oprah kept stressing that we all need to get tested but who would want to get tested after that show???? The only take away was that if you know your status and have sex you can be put in prison. There was no hope or information given about the amazing treatments that are now available. There were no long-term survivors on the show to present a contrasting point of view and there was really no proper mention of how the disease is transmitted other than “use condoms”.

In fact there are numerous treatment options and many doctors agree that most people living with HIV that receive the proper health care can have full life expectancies. I have been living with HIV for 20 years and I have never been healthier.

Of course you did focus on each woman telling her sob story of when they were given their diagnosis because crying and shock factor makes for good TV. However it was not followed up by any sort of hopeful message. The viewer was left unsure of the fate of these women. It was even implied that they might not be around to care for their children.  This was truly misleading and irresponsible.

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I hope one day soon you do a show about the advances in treatment and people who are doing amazing things and making great strides in the HIV arena. Especially since HIV infection rates are climbing in almost every sector of the population. There are hundreds of thousands of HIV+ people around the nation who are not victims and who are empowered to educate the public and help combat the stigma and the disease. I have a deep and longstanding respect for the work you do on the Oprah show. Oprah reaches a huge audience and the show could have done a great service in educating people about the seriousness, treatment and realities of HIV. Instead it just highlighted the drama of one man’s irresponsibility and focused on all the wrong things.

Coincidentally I will be interviewing Diane Reeve this Sunday the 25th on my radio show on www.blogtalkradio.com/poziam. I will be interested to see what she thought of the show as well.

Sincerely,

Jack Mackenroth

58 thoughts on “Open Letter to The Oprah Winfrey Show-Response to HIV show.

  1. Do you think Oprah reads these types of letters? I fully agree with you and I believe that the biggest problem in the world is that nobody wants to take responsibilites for their own actions. Also, by stressing that a person can be put in prison for not telling their status to another person before sex just keeps poeple from getting tested that way they don’t have to take any responsibility!

  2. Media…………What is Media. That is why I don’t like to watch it.
    Reality is the Vision.
    Circumstances that bid farewell to those that are not able to have their Opinion
    Jack you have commented with your experience and knowledge on HIV. It would be nice to have you on that stage!!
    HIV I don’t have, but a few of my friends do.
    Like you said “Cancer is a Disease” I guess the society looks @ HIV as a Situation where it can be transmitted. Therefore ignorance is a Bliss.

    Regards Senka

  3. Awesome response, Jack! I didn’t see the show but it sounds straight out of 1990. Ugh.

    Hope you’re well. So very proud of your successes in the last year.

    Oh, we need our IGLA Pink Flamingo outfits back….there’s serious drag to be done.

    xxoo,

    JOHN

  4. Jack, I’m so proud of you for taking on Oprah, the way she tolerates ignorance. I wish she’d get what you wrote and ask you on her show so you can confront her in person. It isn’t Oprah I detest, but that she internalized every lie and false impression that millions of Americans harbor. The show only served to reinforce the worst and false beliefs about people with HIV/AIDS

    I will be happy to help in any way that I can.
    Sincere best wishes,
    Michael

  5. I am Poz and openly and belong to a UK womens org called PozFem UK and we are involved and consulted often on up to date guideline for women with HIV. While the Swiss guidelines re undetectable virus load and lack of possibility of passing HIV on are not accepted/endorsed by all heath provision in all countries, this is the advice we give and follow and we have many female members in marriages and relationships with men who are not PoZ and it works for them. Some even have children by their HIV negative partners

    I could not see the programme referred to in the letter as I live in the UK but if women hid/disguised themselves I totally agree that this reaffirmed that to be open about HIV is not OK – Which is why I am living my life openly with HIV.

    However I do know that many women do not feel they can be open and it is not always due to their own internalized stigma or shame.

    It has to be remembered that many women are carers of children and often adults too so the decision to be open is not always theirs only to make as it will affect those they care for.

    I can be open as I am in my late 50s and retired and my children grown and my mother & mother in law who I cared for are now dead – so I only have me to consider.
    However I am in contact with many younger women with young children and others to care for and the situation is in the UK at least that if you are known to have a HIV+ parent at school even if the child is not HIV you are often bullied and even discriminated against by teachers – there is so much ignorance out there.

    Totally agree with comments about how it should not be presented that HIV can be passed on by sharing razors toothbrushes etc. I shared both with my daughter even before I was diagnosed when my virus level would have been high and of course she is fine – not HIV – why should she be you can not get HIV that way!!!

    I so wish that I could have been on a show like this as I understand so well why other women can not be but I would have been open and proud and my own personal message is that ‘anyone ‘ can become HIV+. I do not fit any profile of a high risk for HIV . I have been faithfully married for over 25 years and only have had sex with my husband for 30 years . I got HIV because he was briefly unfaithful – we are still together we are lifelong partners and this does not affect this in the least, in sickness and health etc !!

    But my message is also – you can be sure what you have done i.e who you have had sex with and whether you used protection etc .but you can NEVER be sure of your partners. Not even after 25 years of marriage of together – so you have to protect yourself always.
    To late for me but I hope it is not for my daughter

    Yes I am on HAART and in my late 50s and if this program did not give hope then this was completely wrong. I expect to live to be a grandparent and to be around for a lot longer yet – and I will. Yes its scary as a women with HIV and am statisticaly more likely to get breast, cervical and many other cancers and liver , kidney and any number of health problems – so I will not pretend not to be scared, I am.
    But there is so much hope

  6. Jack,

    Well done to you. You are a true inspiration, and I hope that the producers take your letter into careful consideration and take positive action to rectify the situation.

    Continue to fight on…
    Erin xoxo

  7. I was put in touch with Oprah producers in consideration of being ON this show, but didn’t fit the cookie cutter, “nice unsuspecting ‘white’ lady” mold they were trying to portray (NOT AT ALL! LOL). I am also very active in the AIDS community and work for an AIDS service organization called Housing Works in NYC. I actually wrote them at the time, basically saying that while it is good they broached the subject, they need to do a show on the drug addicts, sex workers, AIDS warriors and so many others who are also very much the face of AIDS in this country. I was very disappointed in this show also. I agree there needs to be focus on education, prevention, and the so much more.

    • I wanted to clear up that I realized after I posted this that it was actually an earlier show on HIV+ Women infected by men on the ‘down low’ that I was interviewed for, not this one (I had this one on my TIVO and hadn’t actually seen it yet and just assumed you were talking about the previous show, you know what they say about people who ‘assume’ – lol). Anyway, turns out my comments still apply. Same show, different day…. :) Still a lost opportunity for education, prevention and dispelling myths…

  8. thank you Jack for that response – i am living with HIV in Sub-Saharan Africa and i must say i am disappointed with the portrayal of HIV positive people in your “developed” country. i’m still to watch the show – but after this – i don’t think i will bother. here in Africa – the “Third World” we are getting more respect and validation as strong women living with HIV – i will not waste my time with backward thinking and i am saddened that a person with so much influence could not get a more encouraging and informative panel of strong survivors. enough said!

  9. OMG – Oprah’s at it again… I’ll never forget the first time she did this – when she blamed gay people for “infecting” the black community on her show about being on the “down low”… She needs to keep her opinions out of it until she gets better informed.

  10. Oprah has consistently done a disservice to a wide array of topics including HIV, sexual assault, domestic violence in the military and many others. The “cookie cutter” and “emotional” advocate have become her trademark which limits the discussion.

  11. Jack,
    While I laud all your efforts in HIV awareness, you state two instances whoich are false – or, at the very least, misleading. Razors and toothbrushes are blood-blood carriers. If he first person has bleeding gums, it’s left on the toothbrush for the next person to come in contact with, as is the razor example. Yes, it is not one of the first-line ways of contacting HIV/AIDS, but it is possible. It is that possibility that I find fault with. While it is not probable, it is still possible, and to say otherwise, is just as ill-informed as the Dr’s response. I think much too much of you and all you stand for to let that slip pass unexplained. I have been Poz for 30 years – more than half of my life – and am highly sensitive to the passing of misinformation. Other than that one mis-step, I find you well informed, pro-active, and hotter ‘n hell. Keep up the good work and being out there with a positive face on this disease.

    Thanks for your time,

    Robert V

      • while it is true that HIV will die outside of body fluids, it is also true that virus doesn’t die the instant you remove the brush from your mouth. amounts of the virus can remain viable for minutes or maybe hours outside the body depending on the persons viral load. while the risk is remote it also presents an unnecessary risk. even with out spector of HIV why woud you want to share brushes. no one should be scared to handle the toothbrush of a positive person, but i’m not brushing my teeth with anyones toothbrush but my own, healthy poz or otherwise.

  12. Hey Robert–Thanks for the information. I actually looked it up on the CDC website. While transmission via razors and toothbrushes is technically possible it is HIGHLY unlikely. If the person with HIV has an undetectable viral load then it is impossible. Who shares tooth brushes anyway? So gross. In order to infect someone with a razor or other household implement the razor would have to have a significant amount of highly concentrated HIV infected blood and go from the infected person almost immediately into an open cut on another person. If that were explained on the show it would have been fine. I actually didn’t say it wasn’t possible. I just said I had never heard of it. tha

  13. WOW! What a great letter, THANK YOU! I sure hope this is being read world wide. Being POSITIVE for 27 years and seeing the set backs that are taking place just leaves me speechless. Responsibility falls in everyones hands, I can’t even think of a person choosing unprotected sex with anyone that you have not been committed to for a significant period of think and then there is still something to think about. Knowingly are unknowingly it is your responsibility to protect yourself, this comes with LOVING yourself.

  14. I was astonished at the level of careful thought and clear reasoning in this post. I clicked on the link at Towleroad because I was curious why someone would be angry about an Oprah show. After just the first few paragraphs, I was in total agreement. What a ridiculously misleading show. I do want to point out one thing though – I was visiting a friend of mine for a few days when we all decided to go out for dinner and dancing. I asked my friend’s husband if I could use his electric razor (I hadn’t brought one), and he was fine with that. Later that week, when I got home, my friend called me up and chewed me out, saying they had to buy a new blade (or whatever it’s called) for the razor so he wouldn’t get AIDS. She assumed that because I was gay, I had AIDS (twenty years later, I’m still HIV-, but in her mind all gays had AIDS). She also thought her husband could catch it from me using his razor. It’s sad to see that such incredible ignorance still exists to such a degree that it would even be featured on the Oprah Winfrey show. (Needless to say, that woman is no longer my friend.)

  15. Oprah Winfrey has been “obsessed” with men on the DL for years — always portraying them as evil villains preying on the unsuspecting pathetic female victims. She’s incredibly homophobic (watch her show about “Brokeback Mountain” from 4 years ago, it’s as if she’d never heard of gay people before) and honestly, incredibly stupid. Her fame and wealth are not evidence of anything other than public with bad taste. Let’s face it, this is the woman who gave us Dr. Phil. I don’t watch her show but your depiction of what went on is fairly predictable from what I’ve seen in the past. She’s really only one step away from Maury Povich. She just pretends to care.

    And I agree with the comment above: toothbrushes and razors do carry a certain amount of risk. And I have heard of people getting infected from sharing razors — one notable case of teenage brothers about ten years ago.

  16. Thank you Jack!

    Your letter is right on. Sadly though, I think topics of this nature would get a more rounded perspective on the Tyra Banks show.

    • JACK, YOUR LETTER WAS AWESOME. THANK YOU FOR PUTTING IT OUT THERE THAT ALOT SHOULD HAVE BEEN RESEARCHED BEFORE THAT SHOW AIRED. I TOO AM VERY DISAPPOINTED ABOUT THAT PARTICULAR SHOW, AND THE WOMEN THAT FELT THEY NEEDED TO BE DISGUISED, WHAT A SHAME. THANKS AGAIN FOR THE POSITIVE FEEDBACK, I KNOW YOUR LETTER WILL HELP MANY AND THE RESPONSES TO YOUR LETTER THAT I READ RIGHT HERE, SOME ARE VERY IMFORMATIVE AS WELL. THANKS AGAIN FOR WRITING THIS LETTER, MAYBE OTHER PEOPLE WILL READ THIS AND GET THE KNOWLEDGE THAT WE NEED AND MAYBE OPRAH WILL DO MORE REASEARCH IN THE FUTURE.
      THANKS JACK…

  17. Nice job on the letter. It needs to be far more public to even raise a ripples on her flabby chicken-winged arms.

    I have lost any interest with Oprah, and she has lot a whole lot of credibility with many of the people I know with her “all about Oprah”.

    I think the medical professionals that addressed this on her show need the same sort of smack down (you should write it as you had done a brilliant job) to educated the professional.

  18. “Would someone with cancer wear a disguise?”

    Here isthe problems with your comparison, and the reasons why the women would want to wear disguises other than HIV-shame: they engaged in unprotected sex with a notorious con man. In other words these women are to some extent, gullible.

    No-one, least of all a middle-aged suburban housewife with kids and/or family, wants to be thought of as a gullible, reckless floozy on national television. I have sympathy with their decision to remain masked.

  19. Robert V and Boyd have left me greatly confused when they say they have been HIV positive for 30 and 27 years, respectively. How are these two scenarios possible when HIV was not discovered until 1983, which was only 26 years ago?

    “HIV positive” diagnoses were certainly not made by doctors in 1979.

  20. Jack,
    I have lived with HIV for 24+ years since I tested positive but believe I was infected earlier. I have been out since 1973 and readily disclose my status and orientation. I have appeared in print (by name and with photo) and an on the CDC website in their “Voices of Experience” video series.
    I would love to help produce (put together and appear on) a “The REAL FACES of HIV” or “The Real Facts About HIV” program for Oprah. All the programs she has produced have left major gaps and created misconceptions because neither Oprah nor her staff truly understand HIV and the realities such as homophobia and stigma that are involved. Misinformation, faith-based homophobia, stigma and other forms of ignorance are the biggest barrier to preventing new infections, getting people tested, keeping them in care, having them disclose to sexual partners, and practicing safer sex every time–no exceptions.
    I am not out to show off but I am anxious to stop the flow of misinformation that is harming thousands of people.
    Any suggestions or opportunities … Let me know . .. I’m ready and able to work on this!
    Mark Fischer
    Washington,DC
    fischerwdc@msn.com

  21. Dear Jack,

    I commend you for writing this, but I just hope Oprah reads it. I had commented on her website community boards about this show yesterday, but I have a feeling it’s not going to be posted because my view is that these women should have known better than to have unprotected sex, especially in this day & age of HIV and STD’s. I was appalled by the show for all the reasons you have stated. Especially the part of these women wearing disguises. They have succeeded in perpetuating the stigma even more. :-(

    I have been living with HIV for 20 years as well Jack. I was diagnosed in Nov. 1989 at the age of 25 after my husband died of the complications of AIDS. I was so internally stigmatized for next 11 years that I refused to see a doctor or take medications. I was scared, ashamed and in denial. I resigned myself to the fact that I was going to die before the age of 30. But that’s not my point… I am 45 years old today and I am a white woman. For the past 9 years, after finally seeing a doctor and learning I had AIDS, not just HIV, I have learned that being open about my status is much more healthier than hiding it. The stress of “the secret” was killing me. As it turns out, I disclose more than I probably should, but every time I do disclose it gives me the opportunity to dispel the stigma. I am able to educate even the most ignorant and gullible. I speak publicly and am the program coordinator for an organization called Healthy University. I am also a volunteer peer educator and serve on the Ryan White HIV/AIDS Prevention & Care Planning Council of Kansas City, I am the co-chair of the Community Advocacy Committee. I am dedicated to advocacy & dispelling the stigma of HIV/AIDS. In the end, I am hoping to change the views society has about people living with HIV/AIDS, but I cannot do it alone. People need to know that we come from all walks of life and HIV knows no boundaries. It is a “Human” Virus and people need to know the facts, period.

    The complacency of HIV/AIDS over the past 10 years or so is evident that HUGE awareness campaigns & education in schools, as well as in the general public, are sorely needed. I say this because, just the other day while I was purchasing a cup of coffee an older, educated white gentleman chatted it up with me. I believe he was trying to pick me up. Anyway, he asked what I did for a living and I told him I worked with women who are HIV-positive, helping them cope, offering support and educating them on how to live healthy with HIV. He asked how I got into that field. I replied, “I’ve been HIV-positive for 20 years.” He said, “But you look so healthy.” I said, “Thank you. See, ya can’t tell if someone is HIV-positive by just looking at them.” His eyes were wide and he then said, “I didn’t realize people still got that.” I was totally blown away by this statement. I just lowered my head in sadness. I cannot believe that 28 years into this epidemic people are still in the dark and HIV has been buried in the sand. What a sad, sad day it was for me. Until, that is, when he offered me a job. LOL I turned it down.

    Jack, I am all about dispelling stigma. In fact it is a passion of mine. I am fully disclosed and have no shame about who I am as a woman living with HIV/AIDS. I wonder if you’d be willing to work with me?? Perhaps with other HIV-positive folks who are “out” from all different walks of life and in different stages of their disease. I know many who would be willing to speak out. I wonder if Oprah would be willing to take us on her show to give the real story of Living with HIV/AIDS? I’m working on persuading her, but I think I need your help and I feel your sincerity and passion.

    Honestly, I was dismayed watching this show. Jack, we need to do something. Let’s get HIV back in the media, but with the facts this time. I’m more than ready, willing and able. I want to do this NOW. I’m with Mark Fischer “I am not out to show off but I am anxious to stop the flow of misinformation that is harming thousands of people.”

    Thanks Jack for taking a stand.

    Contact me some time. I’m serious!

    Best,
    Trish Steen
    Kansas City, MO
    psteen.trish@gmail.com

    • Thank you for your post! I agree with all you have said. I love your tenacity and appreciate your courage to continue in the crusade to educate and inform people about living with HIV/AIDS. I was recently diagnosed Positive, and within weeks of my first blood test went down to being diagnosed with AIDS. I am a white female, heterosexual, and in my fifties. Where did I contract this disease from?… no drug use, no promescuity… Husband???? I wish I did know, but I have learned that figuring out where you contracted the disease isn’t as important as TAKING CARE OF YOURSELF! I would love to help you bring much needed light and education to others about this disease! I’d be more than happy to compile A LOT of information and present it to Oprah. Let me know if you would like my assistance!
      Thank you!
      Carrie
      cson88@yahoo.com

  22. Thank you Trish for writing what you have above. I agree with everything you have said. And I am very serious too.

    I am also white , a woman, 57 years old, open about HIV and now a public speaker on HIV and although not diagnosed for anywhere as long as you our stories are not without similarities.

    My husband is still alive – just – but he was very ill before we found he had HIV/AIDs so he has been near to death and back several times with PCP and much more and even with the drugs (HAART ARVS etc ) he is only just holding his own
    The ARVs help but if the damage is already done it may not save your life for long.

    I had a low CD4 but not ill like him so I am OK and doing well on ARVs

    And it was only yesterday that because I was wearing a HIV ribbon and a UK HIV testing promotion ribbon in a supermarket at the checkout I was asked myself about what it stood for…………. not by a man but by a woman and her friend both about my age and she said the thought it was now curable and no one got it in the UK anymore !!!! And she could not believe I had it because I looked so healthy!! My friends daughter who has just had a baby also said the other day that she thought HIV was curable and did not happen in the UK anymore

    So I too am very serious also in that I am trying every day to get HIV back into the British media where it has completely dropped off the frame.

    I have failed so far – have been in a couple of national newspapers and magazines but misrepresented and been turned down for 2 UK TV talk shows because they do not want to hear what I have to say or present it as it truly is.

    I too so want to get the ‘real face of living with HIV’ back out there in the media in my own country .

    So I wish you every conceivable luck and best wishes with your endeavors in the US and hoe yo support mine.

    As a sister living openly with HIV all my love to you

    Veritee

    • Hi V, thanks. And thank you for sharing your story as well. I am so totally in shock that some people actually do believe HIV is no longer around. It blew my mind and has catapulted me into being an even bigger advocate/activist. The stigma is too much and I feel such an urgency to help end it. I’ll do my part, as you are… I guess educating one person at a time is better than not doing anything.

      I wish you all the best and much luck on your journey in the U.K. Perhaps one day we’ll find ourselves on Oprah. LOL But then I’m thinking, eh, why would she want to have us on her show? We know the truth of HIV, Oprah doesn’t seem to get it and I’m sure she’ll only put HIV-positive people on the show who have a sensational story to tell, much like this past one. Sad, but true.

      Anyway, you take care of yourself!

      Sister to sister… love to you!

      Trish

  23. Hi Jack, My name is Susan Brown and I am one of the ladies who appeared on the Oprah Show in disguise. I would like to inform your audience about the reasons for my disguise (among other things) First of all this was a sensational case. While we were helping with the criminal investigaiton, we were assigned pseuodoyms for our protection. It was 7 months from the time charges were filed until Padieu was arrested. Once arrested I really didn’t want the media at my house, or job. I had disclosed to close family and friends, but this was a pretty scary thing. I was trying to understand HIV privacy laws, potential job discrimination, etc. I was supporting 2 families, helping to raise my grandson, and with all the emotianal and physicall issues I really didn’t need to pile on worries about my job or having my grandson tossed out of daycare if people mistakenly thought my illness could somehow be passed to or through him! Of course there is a lack of education and discrimination out there, and until I knew better how to handle it, I needed to carefully choose who and when to tell. An important element of the criminal investigation was that we needed to strengthen the case by showing how many women padieu had infected, also despite health department warnings to stop. Without the promise of pseudonyms, I know that several of the women would not have come forward. Although this was not termed sexual assault, just like in rape cases the defense did everything possible to try and smear us. Of course we had to talk about our sexual history and our gynecology records. One woman who had a miscarriage, also known as a “spontaneous abortiion” was accused of having an abortion over 30 years ago. Now what did her miscarriage have to do with anything? Am I glad I had a pseudonym.? Hell yes. You see, we put our reputations on the line to stop this predator. We faced the public being called deserving whores, sluts, and one night stands. We took responsibility for our mistake, but we were going to make him take responsibility for what he did ON PURPOSE. We are not out to get famous, but to use what happened to us as a way to educate people that YES, HIV/AIDS, doesn’t discriminate – everyone can get it. We were obviously not educated about the dangers, we were too trusting, too blinded, and once we got it, we absolutely freaked out about things like razors, towels, toothbrushes sharing personal items – like mascara, etc. Of course ,now we know better and know some of that is ridiculous. Unfortunately one hour on Oprah and one hour on 20/20 was not enough and we don’t have a choice of what is aired, vs. the hours of tape that gets cut and on the editing floor. The focus of TV has been the message that EVERYONE is susceptible to this disease and we should not be complacent. We should not be trusting, we SHOULD insist on condoms and yes, everyone who is sexually active should GET Tested and be honest with their partners about their status. It is not important who I am, but it is important that I stood up and did something to stop a predator. I may have been gullible at the time but I am standing strong now. I am willing to continue to spread the message that we all have the opportunity and the legal right to maintain our privacy and make our own choice about disclosre when we are ready. Stigma is an issue with people getting tested. I wish it were not so, but it good to know that our privacy is protected if we get tested. Its important to understandi laws against discrimination. These things should help people to make the decision to get tested. Please go to our website getested.com for more informaiton about the case that may help to clear up misconceptions. Thank you for your article. Oprah did a wonderful thing by having us on the show and I think the dialog and controversy as a result can only help raise awareness. It is obvious from the comments on her blog that what happened to us is quite common. I am uplifted and grateful by the many voices of support, compassion, and love from strangers. Yes, there is a lot of hope, but I think what leads to complacency is that people say this is no longer a death sentence. I disagree, for those who don’t get tested and receive early treatment it can be too late.

    • Susan, I admire your courage and am not out to bash you in any way. Yes, we do have our right to privacy and I respect that, but my problem, I guess, is that after living with HIV for 20 years and knowing the mental, emotional stress it can have on a person, especially when it comes to disclosure, I felt that this episode of Oprah just made people afraid of HIV-positive people, afraid to get tested and truly hurt the stigma more so than ever. I have struggled for years to get to a place of acceptance and having the balls to disclose and this show just got to me. I hope that one day you will be able to speak out without disguising yourself. Everyone with HIV has their own journey but I’m just tired of the stigma & I have learned that keeping “my secret” was the worst thing I could have ever done for myself. The stress of keeping silent was slowly killing me. I know there is lots of work to be done to get the facts out about HIV and dispel stigma, but I choose to disclose now more than ever because I see too many people becoming infected unnecessarily. I speak to save others & to dispel stigma. It’s the only way I know to accomplish these goals. I just wish more of us could be so open with our HIV status. I’m hopeful that one day it will happen, but until then I will continue to stand up, and I hope that you & the other women from this show will be able to do so one day as well.

      I wish you well and believe me, I do understand what you are going through. Be proud of who you are, there is nothing to be ashamed about being HIV-positive. It took me many years to learn that & I’m better off for not allowing HIV to control me. I control it. I used to think that I was in control of HIV by keeping the secret to myself, but in the end I was only kidding myself. One of the best things you can do for yourself is seek out support; whether it be family, friends, HIV-positive people or even a therapist. All of those things worked for me.

      All the best to you,
      Trish

  24. I completely agree with your letter…..very well written! I am also constantly shocked at how little attention HIV now gets in the media other than villifying those living with the virus. At the same time, I see thousands of people running for breast cancer and wonder why I don´t see the same thousands of people running for a cure for HIV. Our culture seems to support the idea that specific forms of cancer are diseases without culpability….whereas, HIV is always constructed as a disease with culpability. I really get irritated when I see these arguments about HIV and guilt or irresponsibility. Really, this Oprah episode re-affirmed that HIV is about guilt (because she is presenting those infected that are supposedly without guilt (without asking the question as to why a condom wasn´t used) in relation to the man who was/is completely guilty). When are we going to embrace science and demonstrate that we, as a nation, understand that a virus is a virus and there is no guilt to be attached to becoming infected with any virus?

  25. I totally agree. I was outraged when I watched it, especially when Oprah asked if one of the women with HIV and her negative boyfriend kiss…then was surprised by the fact that it can’t be transferred that way. Welcome to 2009 Oprah.

  26. Great letter, Jack.

    I don’t know this Oprah person, but even considering all of these amazing things you say she’s done, I don’t like her one bit.

    This idea of disguises is ridiculous. You and I both know well that it might be a difficult decision to be public and out about your HIV status, but it’s a decision. Ultimately, I think it’s something you decide to do because you see the good it can do to be an example in the community, and it is horrible that these women did not see the disservice they were doing underlying in their disguises.

    Shame propagates such evil forces, and can so easily be connected to unknowing transmission. And as you say, I think we all know someone who fell victim. Not to a person or to a virus, but to a shame which continues to exist because someone felt too ashamed to tell their partner their status or to get tested at all.

    I did not see this “Oprah” program you’re talking about but I am going to try and find a recording of it somewhere, if for no other reason than to see if the disguises were at least sorta cute.

    xx, p.

  27. sorta cute Patrick??

    When you started I thought what you had to say might just be worth reading but ??? you then blew it
    sorta cute.

    You have no idea at all ……nor probably do you care ?????
    What the issues truly are for any of us living with HIV

    Veritee

  28. Just to be clear, I’m not ashamed of having HIV, but I don’t want to be defined by the disease. When it comes to my job, I want to be known for my work and accomplishments. I don’t want sympathy, I don’t want to lose opportunities because people think they are helping me by keeping my workload lite and stress free. I don’t want to be “let go” because there may be an underlying fear that I can’t hold up to my responsibilities or every time I call in sick it may be the beginning of a short or long term disability situation. I can’t affort to lose my job or opportunities and my insurance, etc. I’m not going to risk it. When you have the right to privacy, why would you blow it? Do you go to a job interview and say, oh by the way, I have cancer or HIV, herpes, mental disease, or whatever? Of course not. This is a professional decision its not about a lack of courage. Hopefully I have proved I have plenty of that. If we give up the right to privacy we may lose it. I choose to be in control of when I discclose and under what circumstances.

    • Susan, If you aren’t ashamed than why in the world do you not disclose yourself? If per chance your children and grandchildren are treated poorly because of your disclosure, than surely dont you think this is all the more GOOD reason for you to join in the crusade to remove the stigmatism?! How ignorant to think that this disease revolves around your disclosure. I would like to see more people disclosing their status openly… silence is the only killer…. we need to speak out and not be ashamed!!

      • Hi Warmheart,
        Thanks for your comments. There are a lot of entries in this blog, and so I will refer back to an earlier one I made regarding a key reason why I have not fully disclosed. I recently married and my new stepson lost his mother to complications from AIDS and cancer. He has some mental issues and we don’t want him to fear losing his dad and me on top of everything esle. So until we are comforable that he can handle it we are trying to protect him from the news. Right now I’m keeping the circle tight, and still trying to advocate through appearances on 20/20, Oprah, and others in the works. I am sure the day will come when it all comes out – but family is first. Thanks for your understanding.

  29. Hi Jack – thank you for this letter. I appreciate your analysis. As a positive woman and coordinator for the U.S. Positive Women’s Network, a national membership body of women living with HIV working to develop leadership among HIV+ women, change public perception of HIV, and for federal policy change (www.pwn-usa.org), I was extremely concerned by the messaging on both the 20/20 special and the Oprah show. Spreading misinformation and incomplete information about HIV transmission is a disservice to everyone – HIV-positive, negative, or of unknown status. And it violates our rights by fueling systemic discrimination, stigma, and criminalization of people living with and vulnerable to HIV. I don’t believe that every person with HIV is obligated to nor is safe to publicly disclose personal information. I think we have a long way to go in addressing HIV and related stigma and people coming out publicly is one piece of that. Another aspect is holding media, and especially popular opinion leaders, accountable for the ways in which they often choose to portray (and sensationalize) issues that disproportionately impact communities that are already marginalized. See you at USCA.

  30. I agree with Susan above. Not everyone lives in the land of gay men where there is far less of a negative stigma regarding HIV. I think the women on the show should be thanked, not chastised, for sharing their stories.

    • James (and others) . . .
      The issue raised (originally) was is not a criticism of the women although some of them have inappropriate and dangerous notions about self-protection and self-preservation that hurt them and will hurt others who act based on similar thinking.
      The issue here is Oprah’s failure, on this show and others, to learn and disseminate an informed, enlightened message about HIV transmission and how to avoid it.
      Specifically, Oprah has repeatedly focused on “who gave innocent folks HIV” … almost always deceitful or DL men … and unilaterally fails to educate and empower women to keep themselves safe without having run the risk of being infected by trusting a man unworthy of trust.
      Oprah needs to stand up and speak out . . . She needs to tell women that the only one who can guarantee a woman stays uninfected is that woman.
      Women need to decide that . . . NO MAN IS WORTH RISKING HIV . . .. The rule is . . . NO CONDOM … NO SEX … NEVER . . . NO WAY! . . . Women need to learn to say to men, “IF YOU DON’T WRAP THAT . . . YOU AIN’T GONNA TAP THIS!”
      Yes, irresponsible men are wrong, wrong wrong! BUT . . . That does not un-infect a woman whose man “did her wrong”!
      IT”S NOT ABOUT RIGHT AND WRONG . . . . IT”S ABOUT UNINFECTED or INFECTED . . . GUARANTEEING the FORMER and AVOIDING the LATTER.
      BTW I disagree with your generalization that “in the land of gay men where there is far less of a negative stigma regarding HIV.” I’m guessing that you are not living with HIV. Even if you are, your experience is not true for many gay men . . . especially men of color.

      I completely agree with and support what Susan wrote. I am HIV+ for over 24 years. I work almost full time as an appointed, sworn but unpaid member of the Metropolitan Washington Regional HIV Health Services Planning Council (aka Ryan White Planning Council), the federally mandated body that serves DC, 11 VA counties, 5 MD counties and 2 WV counties that comprise the Washington, DC EMA (Eligible Metropolitan Area). We are charged with determining how the $29 million RWCA Part A funds for our EMA are allocated to ensure that the needs of people living with HIV/AIDS are met. When primary funding sources (private insurance, Medicare, Medicaid, local or state health programs, etc.) leave gaps, we find an close them.
      Washington, DC has the worst HIV/AIDS epidemic in the nation at the level of a Third World Nation. The largest percentage of new infections are in heterosexual African-American women followed by African-American MSM (Men who have Sex with men — many don’t call themselves Gay).
      My point is that I know an d work with many women, heterosexual men, transgender individuals, etc. Each faces a unique challenge.
      Faith-based homophobia leads to HIV stigma which is probably the most significant barrier to testing, care, adherence to medications, disclosure to partners and regular practice of safer sex.
      Oprah and her producers have the ability to reach and impact women and African Americans. They could make a real difference. They don’t. They produce mediocre programs that do little to help women and often distract them leaving them vulnerable to HIV infectuon.
      I don’t have to be a woman to ache for my fellow human beings, associates, neighbors and those I am sworn to serve who are harmed by HIV ignorance and misinformation to which I feel Oprah and her show continue to contribute.
      If I have gone on longer than you would have cared to read, all I can say is that I am genuinely passionate about bringing an end to this ever-growing epidemic.
      Be well!

      • I meant to write “I completely agree with and support what NAINA (not Susan) wrote” when she wrote “I was extremely concerned by the messaging on both the 20/20 special and the Oprah show. Spreading misinformation and incomplete information about HIV transmission is a disservice to everyone – HIV-positive, negative, or of unknown status. And it violates our rights by fueling systemic discrimination, stigma, and criminalization of people living with and vulnerable to HIV.”

        Make no mistake, I was moved by and feel very supportive of Susan. However, Naina’s comments related to the point I was making.

    • James, I’m sorry, but you are way off base here. The stigma is huge in the gay community. HiV-positive gay men go through discrimination & are stigmatized by their fellow gay men. Stigma is everywhere. Also, I don’t believe we are chastising Susan & the other women, my concern is that this show gave viewers the idea that HIV-positive people purposely go out infecting others, which is far, far from the truth. Yes, there are a few idiots out there who cannot be trusted, but the majority of us living with this virus are responsible & educated when it comes to protecting others from contracting HIV. Most of us are NOT criminals or deceitful like Padieu was to these women.

      I am a white woman, educated and live in a mostly white section of Kansas City. Stigma lives here as well. In the white community, the black community, Latino and gay communities. It’s everywhere you turn. It also lives in Brooklyn, NY where I am originally from. In my little neighborhood of Gerritsen Beach, Brooklyn, NY the stigma is vast and I have done all I could to educate my friends there by coming out of the HIV closet, and also disclosed & educated people I didn’t even know. And I still do that in Kansas City, no matter how hard it can be. I had to fight through the stigma & disclose my status for folks to hear me.

      I do thank Susan & the other women for doing this show on Oprah, and I completely understand their situation, as well as Susan’s, more than you could ever know. I am upset with Oprah & the producers. They have put HIV back into the old days and have stirred up some very frightening myths about HIV transmission. Simply put, Oprah had a real chance to educate her viewers and the public. Instead she succeeded in perpetuating the stigma more than ever. And this angers me and makes me sad.

      I’m sure that one day Susan & the other women from the show will be able to stand up proud and not have to disguise themselves. A note to each of them… be proud, you’ve done well. People like Padieu (who know their status, but go on to infect others) need to be held accountable, I agree with that 100%. Ladies, I know disclosure is very difficult… I hid for much of my first 11 years of being positive, but after I did so, I became more comfortable with disclosing (one person at a time) I truly felt liberated. I wish you all well on your journey.

      Trish

  31. Thanks James , also after reading this forum and also having side conversations with Jack I know many of you are empathetic to the situation even if you don’t completely agree with the way it was portrayed in the media. I’ve learned a few things after being on TV, mostly we get an opportunity to tell the story, but we don’t have any control over the spin. I really feel that given the complexities of the case, there is no way to cover all the bases. I am grateful to 20/20 and Oprah for giving us a voice. It’s impossible for people to understand all the reasons that drove me to disguise — and I’m careful how much to say in front of miillions of people. BTW I was recognized by many that know me well. One thing I feel safe mentioning here is that I recently married (a wonderful man I met on POZ). My new stepson lost his mom to AIDS just 3 years ago. He doesn’t know about her illness, or about his dads or mine., He is pretty messed up over losing his mom and I don’t see a need for him to worry that he will lose us too. So I hope this lends some perspective. Meanwhile I am going to do as much as I can to carry the message. without compromising career or family matters. Thanks for your support. I feel the love, my brothers.

    • Susan,

      I just read your comments and “story” and am moved by them.

      When it comes to living with HIV, the axiom about “walk a mile in the other person’s shoes” is most appropriate. I would not dare to second guess your choices . . . I have had a few folks try to do that to me and I told them that they had no idea what they were talking about.

      In 2001, I was kicked to the curb by an employer that I had helped make very rich. It was very thinly veiled homophobia and HIV stigma based on willful ignorance and laziness. It cost me a house and forced me into disability retirement as a result of an 18-month battle, leading up to being “reorganized” out of work, that that seriously wore me down physically (I eventually came down with pneumocystis carni pneumonia) and emotionally.

      I lost a partner of 21 years in 2005 to a combination of maladies that were initiated and/or aggravated by HIV.

      Only this year did feel ready to even date

    • Susan,

      I just read your comments and “story” and am moved by them.

      When it comes to living with HIV, the axiom about “walk a mile in the other person’s shoes” is most appropriate. I would not dare to second guess your choices . . . I have had a few folks try to do that to me and I told them that they had no idea what they were talking about.

      In 2001, I was kicked to the curb by an employer that I had helped make very rich. It was very thinly veiled homophobia and HIV stigma based on willful ignorance and laziness. It cost me a house and forced me into disability retirement as a result of an 18-month battle, leading up to being “reorganized” out of work, that that seriously wore me down physically (I eventually came down with pneumocystis carni pneumonia) and emotionally.

      I lost a partner of 21 years in 2005 to a combination of maladies that were initiated and/or aggravated by HIV.

      Fortunately, I have rebuilt my health and my life. Devoting my time and talents to HIV/AIDS advocacy and service delivery is far more fulfilling than high-pressure, big-bucks corporate life ever was.

      Earlier this year, I finally felt ready to date and have been spending time with a very “compatible” man who is also HIV+. I am able to live in the moment and let things evolve as they will. Don;t meddle with a good thing that keeps on going! LOL!

      In any event, be secure in your own choices and many thanks for making the contribution you made on Oprah. Please know that my criticism of Oprah is in no way a criticism of you.

      Be well!

  32. Woohoo!

    They say knowledge is power and I am in total agreement with you. I am a HIV Educator and Oprah’s Number 1 FAN, but I must agree that the show dropped the ball for America.

    Oprah is not only a house hold name, but everything you say most people think is the Gospel. Oprah must have a follow up show and get the correct information out there to America! She can start by calling you up and having Positive People Who Are Doing Positive Things on.

    It is time for us to put a stop to the mis-information and get the right communication and knowledge out to the world. Maybe then we can stop so many HIV+ individuals from dying alone because of the fear of what “we” are going to say or do…..to them.

    Nice Job!

    • Hi Sonya and all -
      I’d like to give Oprah another big hug and let you all know my take on some of the controversy. A lot of editing was done for the show, and it just was not possible to fit everything in. I think the role of Oprah, Larry King, and others, is to ask the questions and address the fears that people want to know. So if she asks what seems like a dumb question a la “Can you kiss someone when you have AIDS?” she is addressing a commonly held misconception and let her guests and the Dr. respond. She really is not that dumb, believe me! Also, when we freaked out about sharing our cosmetics, etc., that was part of our initial panic about HIV, when we didnlt know anything and were scared of everything. So talking about these things on the show was educational but may seem absolutely ridiculous to people who have been living with the disease. After my diagnosis I spent several weeks scouring the internet to learn as much as possible. BTW this controversy is good so long as we learn from it. Love to all.

  33. I really am not happy with what I just read about your show that day. It does put phobia back in to peoples minds about HIV/AIDS We need for you to have another show with a real Infectious Disease Doctor and have a Q&A with him and you and your audiance with him . And please pick a Doctor thatisn’t phobia striken himself.

    Sincerely,
    Jerry

    • Susan, it is sad that you have to be everywhere to explain and reexplain your motives for putting Monsieur Padieu behind bars. Some people got you and some don’t. All I can say is that Padieu is a psychopath. Even if it was his desire to infect you and other women, and that it was you and other women who accepted to have unprotected sex so that he can infect all of you, he should have known better that there is a law in place that will punish him as well. The law of the land forbids anybody to transmit HIV to another or expose another to HIV whether intentionally or unintentionally.

      Nevertheless, what really surprises me in all this is how someone like you whom seem to be very articulate could fall for a beast like Padieu. I do not call him a beast because of his HIV but because of his meaness, deceitfulness, lies, dishonesty, promiscuity. I mean I do not understand. Don’t you know that not all men that compliments you have the capacity to fall in love and to protect you. Most are sexual predators who could never fall in love, would love to see you in pain while making love to you, would like to see you in problems during the relationship and after the relationship. There are horrible people out there whom I nicknamed EVIL-BACKED HUMANS. There are plenty of them and if you had been conscious that this type of humans live around you, I sincerely believe that this HIV stuff would have never happened to you and countless others who fell for mean kings like Padieu. Sad Sad!

      HIV is not a virus I wish for anybody, not even to those EVIL-BACKED HUMANS. I am happy, I never caught that shit. It is deadly and hard to treat virus let alone curing it. Again if you add all the stigma that goes with it, then you would prefer the end of the world the next minute.

      Anyway, no need to dwell in the past. Just continue to spread the message about protection, testing and all that. It is all you got to do to make the world a better place for all of us.

      Cheers,

      BOBi

      • Thank you BOBi. I understand your reaction. Many other people feel the same way. If you look at the women infected by Philippe Padieu we cross a lot of cultures and age groups. (Though most were older). We are all well educated. the interesting thing about this case is we got to know each other and compare our experiences with Philippe. All of us wanted to nurture and care for him. Some helped him financially, others through acts of kindness. We did what we could because he “seemed” to be a good, hardworking guy who was struggling to overcome the issues faced by being abandoned by his mother at an early age and then growing up on the mean streets. We fell for his sad storty because he filled our need to mother someone and receive affection in return. Not to mention, as an older man he appeared to be strong and healthy. As we know in hindsight we were absolutely blinded and dead wrong. Its hard to admit to being vulnerable or even silly – aha – but one thing Philippe learned by now is that he was also messing with a bunch of very strong willed women. While we had been weak in falling for him, together we gained the strength to stand up and fight against what he did We made sure he was put in a safe place. Safe for society, that is. Now he will never hurt another and gets 3 square meals a day and free medical care. What a deal.

  34. I got you Susan. I often stress that misfortunes of good and honest people are never from our famous infinite stupidity but from our empathy. I was also just like you until I ran out of people who got the qualities to live in social harmony with one another. In other words, they would go for zero sum game rather than non-zero sum game. As a result, I changed in the sense that I help or give joy to people who truly deserve it today. Well, all I can say to you is learn to make peace with vanity of vanities. If you make peace with vanity of vanities, the life will begin to be brighter and fairer and all those sadness, worries, fear, pain will be gone. You will see that life is larger than HIV or your mistakes or your lost properties. You will see how beautiful the life is and enjoy every second of it. You will see that you do not need to own a healthy or unhealthy life for a second to enjoy it. Life is still beautiful and all you got to do now is change your mindset ok. I do not know you but you appear to be a very nice person and wish you very good man to take good care of you.

  35. hi All I live in South Africa and the show was aired here too.. i must add that i set there watching the show and was also very disappointed in the way it was put together. i work in television as well so basically the point there that hey were trying to put across was not to educate people already leaving and those affected with HIV it was just for the viewers to feel sorry for the victims… fine that was achieved now can we have a show that will give people hope instead of HIV people being views a lethal weapons

    Dolly

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