Tuesday, March 24, 2015

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...

Talking to students

     These days one of the most satisfying things I do is speaking to students about HIV prevention using my story as an example of what can happen if they do not listen.  The past few years I have had the honor of speaking with my dear friend Annie who's story is completely different from mine but equally as important.  Together we tell about our lives as a gay man and a straight woman who happen to be living with HIV and AIDS.
     As we enter the schools, both Annie and I have a simple goal, to reach the students and stop risky behavior that might lead to the transmission of HIV.  We hope when we speak to each class we can reach and help at least one student in the class to change his or her behavior to stay "safe" from HIV.  We also try hard to give important information that the class can use for further discussion when we leave, discussion with family, friends and classmates.
     Recently we were reminded of why the discussion needs to happen after we leave the class.  At one of the school where we speak, the health teacher told us of a student who's mother had pulled her daughter from class on the day we were speaking because she did not want her daughter exposed to HIV.  She told the teacher that  she knew that HIV was "highly contagious" and did not want her daughter to "catch it" from Annie and me.  My first thought when I heard this was that this mother needed to be here in this class.  My second thought, after over 30 years of HIV and people still have bad or no information about it.  Yikes!!!
     At one of the schools we do a "parent night" where we do our presentation for the parents of the school students.  Last year we had scheduled a parent night and not one parent showed up.  The teacher, Annie and I were all so very disappointed but not really surprised.  These days parents are so busy that learning about HIV is not high on their to do list.  They have to work, run their children to sporting events, music or dance lessons, etc. and they don't think too much about attending a class that their children already listened to.  Still, we think it is very important that the parents hear what the students hear so that the conversation about HIV prevention can easily continue at home.
     On Wednesday, April 8th at 7:00 to 8:30 in the evening, Annie and I will again try to speak to parents at the same school.  We are hopeful that there will be at least a few parents in attendance.  This year we will be teaming up with the school's new Sexual Health Education Club.  This club will speak about what they do and what they hope to accomplish.  Perhaps the parents will be interested and then will stay to hear Annie and me talk about our lives with HIV.  We will see...  Stay tuned...
    And if you are interested in more information about the evening class, see below.  I would love to see you there!



Dear Parent or Guardian,

Our Embedded Health program provides ongoing health education to students throughout all four years of high school. In order to provide more information to families about your son/daughter's health classes, we invite you to a Sexual Health Education Parent Night. While we cover a variety of topics in classes (communication, mental health, drugs & alcohol, physical wellness, CPR, and more) the focus of this particular evening will pertain to sexual health. A Sexual Health Education Parent Night will be offered every other year. We plan to have another parent event next year featuring drug and alcohol education. It is our hope to partner with you so that we can support conversations about these topics at home. 

The goal of this parent night is to provide an opportunity to see what your son/daughter experiences in health class. A majority of the time will be dedicated to listening to an exact 11th grade health class presentation, called “Living with HIV”. Students truly enjoyed the presentation and in the words of one junior boy, “I realized that HIV is not something to mess around with!”.  We also discussed how to change the stigma often associated with HIV.

Sexual Health Education Parent Night

Wednesday, April 8, 2015

7:00 – 8:30 pm

High School Room B112 – across from the gym

Our agenda will include:
  • Brief overview of how Embedded Health works & curriculum
  • Hear from students in the newly created Sexual Health Education Club (SHEC)
  • Feature presentation: “Living with HIV”; Red Cross certified guest speakers, Duane Bandel and Annie Elmer.

Parents of students in grades 9-12 are encouraged to attend. We appreciate an email RSVP so that we have enough chairs set up, but it is not required. We will also provide materials to take home to encourage dialogue with your son/daughter. We hope you will join us!

Thank you,

Allison Luskey                                                                                    Amy Pieper-Berchem
Embedded Health teacher                                                              Embedded Health teacher
luskey.allison@slpschools.org                                                        pieper-berchem.amy@slpschools.org 952.928.6241                                                                                     952.928.6136

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