Thursday, December 1, 2011

World AIDS Day - A Retrospective

Me, Leon, Bob at the AIDS Quilt in DC
Bob Died of Complications of AIDS in the Late 80's

Here is a retrospective of my experiences working in the HIV/AIDS "industry".  The industry now includes obscenely priced pharmaceuticals and thousands of individuals working in HIV/AIDS organizations and programs whose benefits may be questionable.

My early work at the Gay Health Clinic was during the early years of AIDS which was still confined mostly to New York on the East coast but was slowly making its way up the Interstate 95 corridor to New Haven and beyond.  My experience at the clinic got me in the door at the State Health Department's Epidemiology Division which was then in charge of tracking AIDS and conducting educational efforts.  

The Department consisted of a few epidemiologists, only one of whom, a gay man, was actually involved in educating the public about AIDS.  When the Department finally got the go ahead to hire a few people I was among the five in the newly formed AIDS Division.  There was Bill, the epidemiologist, Jane, the Nurse/Educator, Hector, the "bilingual" educator, Marge, an epidemiologist, and me, the HTLV-III Counselor.  (Both Bill and Hector would eventually die of complications from AIDS).  We were a tight group.  We went on the road to schools, hospitals, libraries, businesses, where ever anyone would have us.

My first day on the job I was handed a stack of Medical Journals and MMWR's (Morbidity and Mortality Weekly Reports) to read.  I read about the rare cancer affecting gay men in San Francisco and New York, about opportunistic infections, about theories of transmission.  Over the next months I gained an increasingly in-depth knowledge of Mycobacterium Avium Intracellulare, Karposi's Sarcoma, Pneumocystis Carinii Pneumonia, Cytomegalovirus, Toxoplasmosis and of course Human T-cell Lymphotropic Virus Type III (HTLV-III).

When our State finally joined the HTLV-III Testing bandwagon, I helped put together the counseling protocols that were to accompany testing.  As there was no money to purchase pre-printed brochures of which there were very few, I wrote the first Department booklet for people being tested for HTLV-III.  Sometime later it was, of course, changed to HIV (Human Immunodeficiency Virus) testing partly to resolve a dispute with the French over who had first identified the virus in the laboratory.

A few months into the job I was informed that the hiring procedures had not been strictly followed by the Department head who hire me.  I was  required to take and pass a state "Career Trainee" test.  Then I would be re-hired as ( "demoted" to) a State Career Trainee at a considerably lower salary than I was then receiving.  I took and passed the test, got rehired and began my six-month stint as a "trainee".  After six months I was required to take another written qualifying exam in order to re-apply for my original job and classification as Health Program Assistant (HTLV-III Counselor).  I could be re-hired again provided I scored within the top five of "in-house" applicants.  That finally out of the way, I was able to earn my original salary.

My job duties, in addition to helping educate the public, included answering bizarre questions about AIDS over the phone: an elderly woman wanted to know if she and her husband could get AIDS from annual [sic] intercourse; the Greenwich housewife and prison volunteer who was worried about shaking hands with prisoners because they might have seh-men on their hands; and the countless folks asking if they could get AIDS from using a payphone, sitting next to someone on the bus or going to a restaurant where the salad boy cut his finger and bled into the salad...

In spite of what we now consider stupid questions, the work we were doing during the early days of the AIDS crisis was urgent, exciting, interesting.  Even though we worked for a state agency, we were "grassroots".  I was becoming more confident and a little less introverted.  We attended conferences and trainings.  They sent me to Baltimore for an intensive week-long training on STD's and then to San Francisco to a National AIDS Conference.  A job that required me to fly to other cities, and paid for the trip - that was so out of my reality and such a bonus!  I loved San Francisco.  I felt like I had been there before, like I belonged there.

My particular job as an AIDS Counselor was not only to develop protocols for Counseling and Testing but also to train counselors who were hired by local city health departments.  I did one-on-one training and group training and supervision.  I also saw individual clients for testing and counseling.  In the early days there were no pharmaceuticals for treating AIDS.  As HTLV-III or HIV Counselors we would have to convey the news to men and women with positive test results.  What would their reaction be?  How would we "counsel" them when there was no cure, no treatment for AIDS?  What impact would the experience have on us?

I remember delivering the news to one client.  When given the opportunity for questions and further counseling he only responded with "I know what I have to do" and got up and walked out.  Two days later I heard on the local news that a young man had been hit by a train in what might have been a suicide. All testing then was done "anonymously" due to fears of discrimination and repercussions, and I could not help but to think that it might have been the same "anonymous" young man to whom I had given a positive test result just two days ago.

Was there something more I should have done?  Something I should have said differently?  I was no more an "expert" than the other counselors doing the same job.  I thought it would be helpful for all of us counselors throughout the state to come together once each month to share experiences, feelings, and ideas.  I started and facilitated the State's HIV Counselor Peer Supervision Group - a model for HIV Counselors at the time.  There were only about 14 of us in our small State then, and we not only shared experiences, knowledge, and counseling techniques, but also our fears, tears, hopes and support.

About a year and a half into the job, the Federal Government finally allocated money to the States for AIDS Programs.  While this was welcomed, it also brought with it levels of bureaucracy that made both life and work difficult.  We were required to have a Review Council of "average" citizens to review every AIDS and HIV brochure, pamphlet or advertisement and approve them before the Department could purchase or distribute them.  That went for Safe-sex Messages, AIDS Education Curricula for various group presentations, you name it.  Luckily, in our state, the "average" citizen was more likely to approve stuff than not.  But it was another layer of bureaucracy and expense.

Because AIDS was largely affecting minority communities, outreach to blacks and Hispanics was made a priority. Unfortunately, the Health Commissioner unilaterally decided to hire an agency from the Washington Belt-way to do a large portion of this outreach - an agency that delivered staff from the airport by exclusive limousine, put them up in expensive hotel rooms, and billed the Department exorbitantly for questionable services. As "outsiders" they engendered a great deal of resentment on the part of Department staff.  Once, AIDS education was done by volunteers and a few dedicated health workers.  When Federal money entered the equation, there was suddenly no lack of entities with questionable qualifications vying for a piece of AIDS pie.

In the early days, we could easily put together an educational program based on current epidemiology and medical information to take to the schools, colleges, industries, libraries, city halls, insurance companies, hairdressing academies. But Federal Guidelines began to require a written "curriculum" for each particular audience.  The curriculum had to have goals, objectives, methods and evaluations.  Which would have been fine except for the fact that jobs were created for people who did nothing and many hours and dollars were spent and much paper was produced to achieve the same results we had before.  

The whole grassroots HIV/AIDS movement began to be taken over by those who were least effected but who had the most to gain financially.  And we were being choked by paperwork.  After a little more than two years at the State Health Department I left to get back to working with clients and to do HIV counseling at a local (city) health department.  When I left, they hired a woman with an MSW degree (Social Worker) to do my job - and at at nearly twice the salary I was getting with my worthless MA degree (Counseling).

I was hired by the local City STD Clinic to do HIV counseling and testing and AIDS education at local venues including the local rehab center, schools, etc. My former boss asked me to continue to conduct and facilitate the State HIV Counselor Peer Supervision Group, which I gladly did.  I also had to facilitate the local Mayor's Task Force which was made up of representatives from every agency in the city that provided services of one kind or another to every AIDS risk group.  

The turf wars were never ending.   When the state announced "open season" for AIDS grants - and required all agencies receiving HIV/AIDS money to re-apply for grants and opened it up to any and all organizations, every non-profit in the city began fighting over who was going to apply for the allotted funds.  Only one agency in each city would get an HIV Counseling and Testing grant.  

I knew from the outset, how it would work and that the City Health Department would naturally get the contract based on STD experience, its overall mission and because it was just the most logical choice.  But turf was defined and turf wars escalated: agencies serving blacks versus agencies serving Hispanics, drug rehab agencies versus the Episcopal Church-sponsored AIDS Project, Hospital versus Health Department.  

After several weeks of in-fighting, the dust cleared and the City Health Director informed me that I would be writing the grant application.  Tell me something I didn't know.  Weeks of valuable time had been wasted in the quarreling and the deadline was looming.  So I was promised that someone from another agency would help prepare the rather involved grant application - a promise that never materialized.

The City Health Department got the grant.  I was able to hire another part-time counselor, but I made a poor "boss".  I could never treat Orlando as a subordinate, so we got along quite well.  Meanwhile the HIV/AIDS bureaucracy was becoming more oppressive, more political.  Everything we were to do was defined, prescribed, stipulated, measured, counted, criticized, evaluated, revised and entered into a database so we could produce endless reports.  More was demanded of us while having our hands tied.  

City politics demanded we accept "walk-ins" in addition to appointments for HIV Testing and Counseling.  The required pre-test counseling could take an hour or more.  I'd be on duty alone, counseling a client.  Five "walk-ins" would be just outside my door, in the waiting room, getting antsy, demanding services.  

Next in queue would be a young woman whose boyfriend uses needles to inject drugs and who, she says has AIDS.  He "wants to father a child before he dies".  

I have to be the compassionate, rational, sensitive, and nonjudgmental counselor who takes his time to help her reason through this issue and hopefully evoke the appropriate decision.  Secretly, I wanted to just ask this young woman who was prepared to get pregnant by her dying boyfriend, "Are you crazy or what?" 

In the midst of the chaos, the State "supervisor" - the person who took over my job at the State Health Department - shows up to "observe" and "supervise".  It all became too crazy.   My time to leave this job too, drew closer.

I put in my resignation effective at the end of June, and decided to attend my last HIV Counselor meeting - which had grown to seventy-five or more counselors and educators from agencies around the state and facilitated by the State Health Department AIDS Division Medical Director.  The June meeting was always held at a conference center at the beach because, years ago, one of the local HIV Coordinators and I conspired to make it so.  We encouraged attendees to take a half day of vacation, if possible and then join in an afternoon of sun and surf.  Many did so and it became an event to look forward to.

This particular June meeting had been designated as "Award Day" and many counselors and health educators were to be recognized for their work in the field.  For some reason the Medical Director felt the need to acknowledge my presence at the meeting and after introducing me as the state's first HIV Counselor and the force behind the present group meeting, he added "We have a special award for Frank, but it wasn't quite ready for today's meeting. No, it's not a Ferrari." (Laughter)

I know BS when I hear it and this was definitely BS.  Did he suddenly realize that my contribution to the field had never been formally recognized?  Did he feel the need to "save face" because there was in fact no "award" for me?  I think awards are basically silly and was not even thinking about an award or lack of one.   But after that statement I must say I did think about it.  Needless to say, no award - special or otherwise - was ever forthcoming.

Several of my friends and acquaintances died during this period and it was a difficult time - often made more difficult by the very entities that were supposed to be helping.  I hope those of us in the trenches provided some degree of comfort, hope and direction to those who sought our assistance.

3 comments:

Russ Manley said...

Well good on you, Frank. That's quite an impressive record of work there in the trenches, and I know the kind of commitment and caring it takes.

I was a volunteer counselor, trainer, and supervisor for four years at a small telephone counseling outfit that had a contract to be the statewide HIV/AIDS hotline - this was back in the early 90's before the drug cocktail came along and changed the whole outlook of things.

Being a volunteer, not regular staff, I wasn't caught up in the administrative work, but having had state government jobs I well know the kind of bureacratic disease that chokes everything, perpetuated by brown-nosers sitting on their fat butts in cushy chairs all day who never have to deal with clients or the public.

But don't get me started on that. My role in fighting the plague was much smaller, but I was glad to do my part and I can relate to a lot of what you said. Well done, my friend.

Theaterdog said...

That was incredible.
I am waiting to see the documentary "We Were There"..but feel as though I just got a preview.
I volunteered with the Shanti Project in SF circa 1987 as a counselor to young men diagnosed and with no family. Although not a career for me, I saw within this agency a bit of chaos, fear, and general mayhem as it was all so overwhelming.
Thank you for sharing this tribute.
Seems we are all steel magnolias when we look back, perhaps this is why we should.
peace, Tim

Bill Dameron said...

That was an amazing count from the front lines in the beginning. I cannot imagine how difficult it must have been to deliver the news "You're going to die" . Thanks for sharing this.

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