I am pissed and I can no longer be quiet!!!

     Today I attended a meeting.  I won't say where or much about what the meeting but one point made during the meeting left me pissed off.  Usually I can internalize and not make a "big deal" about things that anger me but this time I feel a need to write about it and maybe in the process, get others to see my point of view and assist me with the issue.
     It all started when the discussion at the meeting came around to getting more people interested in HIV and AIDS related activities, especially as it related to the AIDS Action Day at the Minnesota State Capitol.  Getting people interested in attending events like this has been a problem ever since I first became active with the HIV Positive community.  And as the years progressed, this problem has become MUCH worse.  No one seems to care about HIV/AIDS related issues and about HIV prevention these days.  They would rather wear a pink ribbon and talk about breast cancer (my apologies to anyone who has been affected by breast cancer in any way) than wear a red ribbon and talk about HIV/AIDS.  I can totally understand that breast cancer is a terrible disease and that much more needs to be done to fight it but does it really deserve 99% more attention than HIV and AIDS?
     34 years ago the first cases of HIV were found in Minnesota.  At the end of 2013 there were a total of 301 new cases of HIV/AIDS diagnosed in Minnesota and it was estimated that another 1500 to 2000 people were living with HIV/AIDS in Minnesota and were not yet diagnosed.  Since 1984, nearly 8000 people with HIV/AIDS in Minnesota have died and in 2013, 71 died.  Why after 34 years are people still being infected with a virus that is TOTALLY PREVENTABLE?
     One of the big reasons why no one will talk about HIV (in my humble opinion) is that the news media will not talk about it.  You see adds on TV all year long for the breast cancer walks and fundraisers, there are news stories at least every other week about breast cancer and other forms of cancers but almost never do you hear anything about HIV.  And at today's meeting I was reminded of one possible reason.
     At the meeting while discussing how to get more people interested in and involved with the AIDS Action Day, I brought up the possibility of perhaps pushing for more media coverage of the event.  In my 12 years of attending and working with AIDS Action Day and the Minnesota AIDS Walk, media coverage has dwindled from not a lot to absolutely nothing.  I thought that perhaps if there was some sort of news coverage, there might be a renewed interest in HIV related causes and HIV prevention would again become a topic of conversation throughout the state.  My idea was almost immediately shot down.  It was discussed that perhaps we should wait until there was a "big" story before inviting news media instead of just talking about the problem of HIV in the state and the lack of HIV prevention education.  It was also mentioned that maybe newer faces should be the ones who talk about the topic instead of those of us who have been doing this for years.  One person jokingly said that maybe if I chained myself to the capitol building, I could get some media coverage on my own.  And although I will do almost anything, I was NOT amused at that suggestion.
     For 12 years, ever since my diagnosis, I have pushed, I have pleaded, been interviewed, I have put myself out there in schools with student HIV prevention education, I have gone to the state capitol and I have spoken to legislators again and again, I have begged and pleaded for money for the Minnesota AIDS Walk, I have made donations to the AIDS Walk and to the Red Ribbon Ride, I have written emails and letters to legislators and the local news media, all of these things and much, much more and still, HIV remains a big problem in Minnesota and throughout the US and world.  And still, no one seems willing to talk about it and no one seems willing to get the media interested.  Will those of us with HIV and AIDS have to start dying by the thousands again before our voices are heard?
     Yes I am pissed and no, I have no answers on how to fix the problem.  I guess I will continue to work as hard as I can to get the word out.  I will continue to write, educate and scream and I will happily accept any and all help.  I will try and try again and again to get the news media and the general public in Minnesota to once again talk about HIV and AIDS.  And I will do all this until there are NO NEW CASES OF HIV DIAGNOSED IN MINNESOTA!!! 
     Even if I have to chain myself to the capitol building....  well, maybe not...


  1. I don't get it either. Why is breast cancer the media darling? As with you, I empathize with those who suffer, but what's the deal? Are they more organized? More connected? I wonder about this with mental illness. It's one thing to wear a green ribbon, but let's see some real and effective change. The idea of "when to invite the media" is goofy. They should always be invited.

  2. People have a lot of different things vying for their attention, some positive, some negative, some time-wasters and rabbit holes we fall into online. HIV/AIDS is another voice asking to be heard. It's an important one, and so is breast cancer. I'm just one person who has lost loved ones to breast cancer. I've also had friends affected by HIV. I get your point. Breast cancer folks are super-organized. Sort of like the republicans who hunkered down and managed to do the same after Clinton was elected twice. An entity like the Komen group is nationally known, a household name. Maybe that's the difference. Certainly stigma has got to have a part in this. A damn shame. I don't think in terms of pink ribbons or red. Either color looks fabulous on me.


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