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