My Letter to the State of Arizona.

[Moffie65]

Earlier this year, I sent this letter off to the Arizona State Department of Health, HIV/AIDS Advisory Council, and I just thought for those of you who have followed my work in the state, you would enjoy reading it here, so I give it to you to read. 


An Open Letter to the State Advisory Council

It was late 1979 when I lost my first friend to this disease.  Steve Sanborn was a stunning man about 5’ 6” tall, stocky, with a very well developed body.  He was a telephone lineman who could scurry up a phone pole with the efficiency of a squirrel.  We were very close friends and spent many weekends sitting in his hot tub and watching “I Love Lucy” reruns and laughing and joking all the time.  He was the talk of the gay community because being a Taurus; he had a raging bull tattooed on his right butt cheek and always wore his very well fitting Levis to the bar with the right pocket carefully cut out.  I went to visit him one day at Kaiser Hospital when he was suffering from Pneumasistis Carni Pneumonia.  He died two days later.

Early in 1980, I went to The City for a Friday night and ran across Arnie, a friend from the Castro neighborhood.   We spent a wonderful evening at a Castro Street restaurant, having dinner and then going out for drinks and dancing for the night.

 Thirty days later, I was again in The City for the evening and I met up with him again on Castro and he was just a whisper of his former self; being a former body builder.  He was on crutches, and could barely walk by himself.  He didn’t have a phone because he was struggling with doctor bills and just keeping himself alive, so I didn’t know how the past thirty days had been treating him.  He cried out how glad he was that I had made the trip up from Silicon Valley to The City and tried to give me a hug.  He was in huge discomfort, and while we were talking; he simply dropped to the sidewalk, stone cold dead.  I literally fell out on the spot.  I didn’t know what to do, because I had never witnessed someone dying, and also didn’t know what to do in a big city.  People were walking by, and some stopped to offer help, but how do you help a corpse?  We were in front of the local Chinese restaurant and the owner came out with one of his table cloths, and placed it carefully and lovingly over his frail dead body.  He bowed to me and apologized for his death, and then went back inside to call the police.  At that very clear moment, I was transformed to a raging angry activist.  I had never been an activist and had never walked this new road, so I felt totally helpless and lost.

Many of the Gay Community in those early days shared not only my confusion, but also my fear and my passion.  I was immersed in my new job at Eastman Kodak and living 60 miles south of San Francisco, which kept me somewhat disconnected from the struggle that was quietly raging, in a community the nation didn’t even really know or care about.  People in the community were rapidly organizing and making sure those who were struggling to stay alive had food and were taken care of in any way that we amateurs could help.  My part in the struggle at that time was more focused financially than physically, and whenever I went to The City for the weekend, I would shove a $100.00 bill into my pocket to place in one of the jars that would always be on a table with volunteers on the steps of Bank of America at the corner of Market Street and Castro.

I watched as more and more friends died, and to this date, I have said goodbye to about 190 friends and acquaintances.  Early on, we all expected that this disease would soon take us all to our grave, and the dichotomy of freewheeling sex, yet fear and concern about how we all were going to take care of our community were our only real goals, and there was an aura of fatality that dominated everything for those early years in the San Francisco Bay Area.

Skip to today, and you all have seen me involved in activism all over the state of Arizona.  I did this partly because few were doing the necessary work to keep our voices out there and being heard, but also because that is what I do.  In New Mexico in the early ‘90’s, my partner and I started an AIDS service organization in the southern part of the state, and were very active in the workings of Ryan White in that state.  When we arrived in Cochise County in the latter part of 1999, we noticed that the care being offered was not anywhere near what was required or mandated by the legislation, so we set out to try and make a difference for the clients we saw were suffering.  There were even some deaths because the work wasn’t being done correctly, so we just couldn’t allow that to remain the status quo.

I am now 61, and have in the last year, suffered massive drug failure and have now been placed on the two most recent drugs to become available.  I have now had my first tests since starting these meds and I have become non-detectible for the first time in years.  I do trust that these will continue working without any undue side effects that would keep me from taking this cocktail, so I remain very hopeful

After about 28 years of off and on activism; I find it time to give up my calling and move to the back of the room to take care of my own issues and life.  I want to do so many things, yet never seem to have enough time or energy to accomplish them.  I now find it more important to stay home and take care of my partner and my home, so I will be cutting way back on my commitments.  I have also decided to quit writing my column for the Sierra Vista Herald, and I will limit my work to the occasional speaking engagement, and an occasional conference. 

I have really enjoyed the work we have been able to accomplish over the last 8 years, and many of you have been a part of that work, and for that I am so very grateful.  Now it is time for some of you to step up to the plate and become involved in the work of making sure our voices are still heard and we still remain relevant.

Some of the new guidelines of the new Ryan White seem to be headed in the direction of curbing the number of dollars spent on us.  I have heard some of you in this room say that HIV is the only disease which gets so very much money, and I would like you for one second to think what this kind of talk means to us who carry the bug.  The drug companies have won their fight to now define this disease as a “Chronic Manageable Disease” and many ASO’s in the United States, have now adopted this new mantra and are cutting back on their support of the clients.  One thing which I want all of you to remember is that if the dollars are restricted, and the money doesn’t cover treatment or access to medical care, surprise surprise; HIV then reverts back to a deadly terminal illness.  The choice is up to all of you.

Finally I want to close with a historical event that many of you know nothing of, so I find it important to share.

In 1983, Bobbi Campbell and some of his friends; as founding members of the Advisory Committee of the People with AIDS, drove from San Francisco to Denver, which was an accomplishment for these dying people.  They crashed a National Health Conference, which was well attended by many from Government.  They arrived at the beginning of the conference during the Keynote Speaker’s address, walked out on the stage, and read the following.
THE DENVER PRINCIPLES (1983)
(Statement from the advisory committee of the People with AIDS)
We condemn attempts to label us as "victims," a term which implies defeat, and we are only occasionally "patients," a term which implies passivity, helplessness, and dependence upon the care of others. We are "People With AIDS."
RECOMMENDATIONS FOR ALL PEOPLE

1. Support us in our struggle against those who would fire us from our jobs, evict us from our homes, and refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.

2. Not scapegoat people with AIDS, and blame us for the epidemic or generalize about our lifestyles.
RECOMMENDATIONS FOR PEOPLE WITH AIDS

1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.

2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.

3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.

4. Substitute low-risk sexual behaviors for those which could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.
RIGHTS OF PEOPLE WITH AIDS

1. To as full and satisfying sexual and emotional lives as anyone else.

2. To quality medical treatment and quality social service provision without discrimination of any form including sexual orientation, gender, diagnosis, economic status or race.

3. To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives.

4. To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are.

5. To die--and to LIVE--in dignity

When Bobbi was finished reading, he turned to excuse himself and give it back to the keynote speaker, but was stopped with a standing ovation of five minute duration.  They changed the whole climate of the Health Conference and in turn started a movement to move HIV into the mainstream.  We need to help continue that by not hiding and not accepting negativity from anyone.  These principles are not negotiable and we have slept until we are very close to loosing them to apathy.  Let’s not allow that to happen!

It is with a huge amount of emotion that I now must resign from the Advisory Council and Formulary Committee and move to the rear and offer my support to all of you who will now take the reins and move us onward into the future.  The disease is spreading very fast in our border regions, yet the money is not there from Washington to really do comprehensive prevention and testing along the border.  Why?  Because the data, which has never been accumulated, shows that the need is not there, so consequently the money isn’t either.  We are not prepared for a huge increase in incidence, so many are not willing to focus on our state and really do the amount, and kind of work necessary to help our communities.

Thank you all for your support over the last 8 years, and I can’t tell you enough how moved I am that there are more and more people becoming involved in this very important work.

With Love,
Tim