Tuesday, December 1, 2015

World AIDS Day - 2015

The date was June 5.  It was a Friday – and it was 1981.  The CDC’s Morbidity and Mortality Weekly Report (MMWR) would list the first cases of what would later become known as Acquired Immune Deficiency Syndrome or AIDS – a word that still brings chills when it is uttered.  Some years ago I read a copy of that MMWR  - I had never seen it before.  As I read the description of the conditions of the first five cases, I shivered involuntarily.  Knowing what was to come didn’t help any.  The name of the condition would later become known as HIV – Human Immunodeficiency Virus once the source of the condition was identified.

Today is World AIDS Day, an international acknowledgement that this disease is still with us and has a global impact like few things have ever had.  It is always December 1.  That’s unfortunate for us Episcopalians because it gets eclipsed by the beginning of Advent and the prayers and lessons that go with our liturgical New Year.

The Episcopal Church was the first church to address the AIDS epidemic at a church-wide level.  It began with a gathering at Grace Cathedral in San Francisco in February 1987 when those of us who had been involved in various aspects of the issue came together for a national conference.   It was several days of tears.  There were tears of loss.  There were tears of relief that none of us was doing what we did alone, despite the fact that we were just learning about each other.  There were tears of anger at the failure of government to respond to this epidemic when it was still new.  There were tears of grief over the thousands we knew who had already lost the battle with AIDS.  There were tears…..cleansing and refreshing, helping us each to sort out where we were and what was next.

From that gathering the National Episcopal AIDS Coalition (NEAC) was born.  From that gathering emerged an “AIDS Desk” at the Church Center at 815 2nd Avenue in New York City. From that gathering a response was begun that would last for years and spin off various other ministries and programs around the country.

When the staff at the Church Center was reorganized, the AIDS Desk was eliminated but NEAC became the contractor to provide for the ministry of The Episcopal Church in the HIV/AIDS arena. Over the years there were funding challenges but The Episcopal Church continued to fund at least a minimal effort through NEAC.

Unfortunately, the funding for any HIV/AIDS ministry provided by The Episcopal Church will end as of midnight, December 31, 2015.  The budget for the triennial ending in 2015 is the last budget to include such funding.  At that sad moment, The Episcopal Church will have bowed out of a church wide response to the HIV/AIDS epidemic.

The only other source of potential funding might be through the Executive Council, but that is doubtful.  And without a commitment to sustained funding, NEAC nor any other agency is likely to take up the baton for prevention education, ministry and hope.

From my perspective, the loss of funding is another aspect of the manifestation of racism in our church.  Most congregations no longer see those ill from AIDS in their pews.  It isn’t that such folks do not exist.  It is simply that the majority of new infections are now people of color and most of our churches are very white.  The time of the handsome gay men dying among us is long past.  What is out of sight soon becomes out of mind.

There have been, sadly, few changes in the situation over the years.  The infection rate is on the rise among young gay men again.  Province IV is the most heavily impacted geographic area of our nation and our church.  Province IV is where the costly and often deadly combination of ignorance, poverty, illiteracy, racism, stigma and homophobia happens so readily.    Statistics are alarming in that the fastest rates of increased infection rates are in Province IV.  Some areas exhibit rates comparable to sub-Saharan Africa.  (Even some truly honest sex education could have a huge impact but this area is also the home of “abstinence only” sex education in schools.  It works so well that many of the states in that area remain near the top of the charts of infections from HIV and other STD’s as well as teen pregnancy.  No one seems to make the connection between these statistics and the lack of basic and honest sex education.

June 5, 2001 was the 20th anniversary of the beginning of this terrible pandemic.  At the end of this article, you will see an address I delivered on the occasion of an observance of the 20th anniversary….it was an observance….no celebration was appropriate.  As I re-read what I had said I was saddened and dismayed at the situation we are still in as a church and a nation.

Yes, of course, we have PreP as a way of helping stem infections.  But rising infection rates of other STD’s indicates that condoms are not being used by those on PreP as is dictated by the regimen for the medication.  False security lures many into peril.  Maybe some day in the not too distant future we will actually deal realistically with HIV/AIDS.

So, I invite you on World AIDS Day 2015 to pause and remember those who have died, pray for those still struggling, and commit to doing something to get the attention of elected officials and others that might actually slow the infection rate and make this truly a chronic condition rather than a deadly condition.  It is possible.

Bruce Garner, President
Integrity USA

AIDS: Remembering 20 years

The date was June 5 – same as today. It was a Friday – and it was 1981. The CDC’s Morbidity and Mortality Weekly Report (MMWR) would list the first cases of what would later become known as Acquired Immune Deficiency Syndrome or AIDS – a word that still brings chills when it is uttered. A few days ago I read a copy of that MMWR - I had never seen it before. As I read the description of the conditions of the first five cases, I shivered involuntarily. Knowing what was to come didn’t help any. The name of the condition would later become known as HIV – Human Immunodeficiency Virus once the source of the condition was identified.

Yet from the start, the scientific/medical community would perpetrate a travesty on those infected with this virus. They would initially call it GRID – standing for Gay Related Immune Deficiency. In doing so they would, from the beginning, forever make AIDS a political condition instead of a medical condition. They would affix to a medical condition a stigma that remains associated with it to this day – 20 years later.

It should have been unconscionable to even think about connecting a medical condition to a specific group of people. Tay Sacs has no reference to people of Jewish or Mediterranean descent in its title. Sickle cell anemia is not, by its name, connected to people of African descent. Yet it was done with AIDS – and all who are infected with HIV continue – one way or another – to pay the price for initially associating the condition with a particular sexual orientation.

By 1982 people had begun dying in noticeable numbers. It wasn’t clear why except that they all had diseases such as pneumocystis pneumonia and Kaposi’s sarcoma. And these were not diseases that killed people under normal circumstances – as we were to learn, people with immune systems that were intact. These were the two most well known infections at the beginning of the epidemic. Time would reveal exotic, nearly unpronounceable viral and bacteriological infections that caused dementia, wasting syndrome, diarrhea, and a host of situations ultimately resulting in a way of death as horrible as any imaginable. Typically at the time of death, the victim looked for all the world like a victim of Auschwitz or some other Nazi concentration camp from the Holocaust. I saw it all – and not long after it began.

In the early years, those thought to be at risk were often referred to as the four H’s: hookers, homosexuals, Haitians, and hemophiliacs. Again – labels associated with people were used to identify a disease. It would be several years before we learned that the method of transmission of the virus had nothing what so ever to do with who you were. It was plainly and simply a matter of something that one did – an activity that put one at risk for becoming infected with HIV. None the less, the stigma still lingers.

My involvement with the epidemic began through the Social Security Administration. A friend was having problems with his disability claim. Things were not as efficient or well-defined back then as they are now. Months went by without a decision. In July 1984 when I learned that Tom was in Emory hospital again and no decision had been made I got involved. I was finally able to determine the source of the problem with the claim: the doctor had waltzed all around a diagnosis of AIDS but had never written the definitive words in the medical evidence.

I took it upon myself to drive to the Emory Clinic, obtain the proper medical and take it to the Disability Determination Services in Decatur. The examiner said he would let me know the outcome. I got a little pushy and advised that I would wait, explaining that Tom was near death and I wanted to tell him before he died that his claim had been approved. The examiner went away for a short while, returned, and told me that Tom’s disability claim was approved.

I rushed to Emory Hospital and told Tom. He could not speak. The tracheotomy tube was still in his throat, even though life support had been removed. It would be just a matter of time. But Tom was alert and smiled when I gave him the news. And he knew his children would be receiving survivor benefits as well as his retroactive payments.
It would be many more hours before Tom would leave this world. He died shortly after midnight on July 4, 1984. Watching him take his last breath is a scene permanently etched in my memory. 1984 Was the year that the mode of transmission of the virus were identified.

As the summer of 1984 wore on, I began to see another friend, Gene, begin to exhibit symptoms that would become all too familiar to me over the years: fatigue, shortness of breath, no energy. In September, Gene was diagnosed with AIDS. That same weekend I began my career as an AIDS volunteer with AID Atlanta. In October I joined the board of directors of AID Atlanta, where I would remain for six years serving as Treasurer, Secretary and two terms as President. I have been on at least one and as many as three AIDS service organization boards at the local and/or national level since that first association began. Gene died a year later – in October of 1985. Gene’s and Tom’s deaths were only the tip of an iceberg of death and grief that would impact me and thousands of others for the rest of our lives.

The first International Conference on AIDS was held in Atlanta in 1985 – SSA was there. It took a small fight with HHS but we were there!

Friends began dying at a horribly fast rate. For many years I lost an average of two dozen friends a year. I once kept a list. When it topped 200 names, I stopped entering names in my death log. There was no point. With one or two exceptions I lost one entire generation of friends then made and lost another. Almost all of the people with whom I had expected to grow old died.

The numbers of cases continued to rise, as did the numbers of deaths from AIDS. Even after the virus was isolated and named HIV, infection and death continued. And even the discovery of the virus was embroiled in politics: French and American doctors fought and argued over who discovered it first! Who gave a damn about who found the virus first, people were dying! In 1986 Surgeon General C. Everett Coop called for AIDS education in children of all ages. And he called for the widespread use of condoms.

My closest, dearest, and best friend was Walter Alan Morgan – Alan to me, Walter to his family. We met when he came to the Savannah District Office as I was leaving the Savannah Southside Branch Office to come to the Regional Office. We discovered that we were soul mates – we were brothers born to different families. It was a relationship between friends that few are privileged to ever have. Thirty seconds into any telephone conversation either of us could tell if something wasn’t going right with the other. We truly communicated like siblings.

Alan went on to become an Operations Supervisor in the West Palm Beach District Office and then the Branch Manager of the Pompano Beach office. As fate would have it, we never lived in the same town: Didn’t matter, ours was a friendship not dependent on proximity.

Alan hid his condition from me for a long time. During a period of my life when I was experiencing the loss of so many friends I had commented to him that I wasn’t sure if I could handle it if it happened to him. So he kept his own illness from me until he was already very sick.

The last time I saw Alan, he was in a hospital bed in Broward County Hospital. I sat by that bed all night long praying that he would die – that God would take him home. It didn’t happen that night. The following Saturday, the Saturday after Thanksgiving in 1987 I received the call telling me that Alan had died earlier that morning. 1987 was the year AZT received approval for use in fighting AIDS. Too late for Alan.

I learned about grief more intense than I could have imagined – despite having already gone through so many deaths. I also learned the danger that comes from not dealing with that level of grief. Making the panel you see here was a cathartic experience for me. I was finally able to say good by to Alan, to let go. In May, 1988, when I turned the panel over to the Names Project, the moment of presentation had been preceded by hours of gut wrenching sobbing. When it was over – I was cleansed and finally ready to move on.

The panel I had made for Alan was presented to the Names Project at the 1988 display of the AIDS Memorial Quilt. The display committee would later become the Atlanta Chapter of the Names Project. I would have the honor and privilege of serving on and chairing its board of directors several years later. Dozens of us were bitten by the Quilt Bug! It was a bite that would provide some of the salve needed to help heal the wounds inflicted by the AID epidemic.

Once the virus was isolated, there was new hope that drugs could be found and developed that would fight the disease. The first, as mentioned, was AZT.

AZT was a gamble. It was not initially clear what the dosage should be, how often it should be taken, what the side effects were, or what the long-term effects might be. It all began with 4 pills every four hours around the clock. There were jokes about gay men “beeping” every four hours. It was the pill timers that everyone used to keep up with their medicines. You could be in a group and someone’s timer would go off. There was this mad scramble until the one pill timer that had actually gone off was located. It was a simple touch of humor for an increasingly sad situation.

During the early years, AID Atlanta, founded in 1982, was the only service provider in Atlanta and the entire state for people with AIDS. Later Project Open Hand was founded – a spin off from AID Atlanta’s meals on wheels program. Similarly the Atlanta Interfaith AIDS Network sprang from AID Atlanta’s Department of Pastoral Care. We could not get grant funds to support the department, so we spun it off on its own. A former AID Atlanta board member, Sandra McDonald founded Outreach, INC., to provide a program of services focused toward intravenous drug users. Later Jerusalem House was founded. Then AIDS Education Services for Minorities and others would be founded to deal with the needs of those affected by the epidemic.

It was also during those years that we witnessed people with AIDS being bodily removed from airplanes and left to crawl across a sidewalk to a taxi – if one agreed to take them. We witnessed housing evictions – not because of inability to pay rent – but because of being ill with AIDS. Some dentists, even some doctors, refused to treat AIDS patients. Ignorance and fear were the orders of the day. Some of that never changes.

In 1989, I reached a milestone age: forty. It was time for complete physical exams and time to begin watching for those things that can go wrong with the human body as it begins to age. Part of that exam was to be an HIV antibody test. But I chose to go a different route – a T-cell count. If the count was below a certain number, it would be pretty certain that I was infected. The T-cell count wasn’t high enough. I took the HIV antibody test. The test confirmed what, in my gut, I already knew: I was infected. There was no screaming or crying, no hand wringing. I was well versed in the subject of HIV at that point in my life and I would simply deal with it. By looking at the T-cell levels and a medical event that took place in my life in 1982, it became clear that was when I became infected and sero-converted.

Later during that same year, 1989, the drug protocols would indicate that anyone with a T-cell count lower than 500 should to on AZT. Mine was and I did. I went on AZT. I washed down my very first doses with a Michelob beer as I stood in my dining room. And I started beeping every four hours!

Time and AIDS marched on. The drugs changed – new ones came out – some worked better than others, some not at all. And some people could not tolerate the side effects of any of them. More people died. I remained involved in AIDS work – partly from a sense of obligation; partly with a fervent hope that someone would be there for me if I needed them. I developed new circles of friends. Not everyone was dead – most were. I attended funerals, I conducted funerals, I buried friends.

Ryan White died from AIDS in 1990 at age 18. His name lives on in the Ryan White CARE Act – now the major source of Federal funding for services for people living with HIV/AIDS.

New classes of drugs became available and I’ve been on a good many of them. Most worked for me quite well – no side effects of any consequence. One notable exception occurred when we had to smuggle DDC into this country from Mexico. Our own FDA had not yet given it their seal of approval despite its use in several places elsewhere in the world. Apparently one shipment of DDC came into Atlanta that was about twice the usual strength. The side effect of DDC is neuropathy. So when hundreds of us started losing the feeling in our toes, we stopped taking it immediately.

By 1995 HIV became the leading cause of death among Americans between the ages of 25 and 44. In 1996 protease inhibitors and multi-drug therapies were introduced, bringing new optimism.

At the moment I’m on a three drug combination or cocktail. I take four pills each morning and three at night. To those I add half a dozen other pills during the day. Some control the potential side effects of others – some deal with other issues. But I no longer beep!

In many ways, HIV is becoming a chronic, manageable medical condition rather than a health crisis leading to an eminent death. The pills keep many of us healthy. But they still don’t work for everyone. I still lose a couple of friends each year to AIDS. And the situation in the less developed areas of the world remains a serious health crisis, generally leading to an early death. The drugs either are not available or are too expensive to buy. In those parts of the world, AIDS still means death. It also means millions and millions of orphaned children.

I saw that face to face several years ago on a visit to Honduras for the National Commission on AIDS of the Episcopal Church. I sat across the table from four young adults, all HIV infected. There I was, with access to all the drugs available for the treatment of HIV. There they were, they had access to virtually nothing. The drugs that are available are targeted toward infected children. Talk about guilt!

Educational efforts in the gay community in this country slowed the rate of new infections to a standstill several years ago. But by 1999 there was evidence that the infection rate is once again on the rise. A new generation of young gay men didn’t have the preventive education provided by the deaths of dozens of friends. Youth equates with invincibility and immortality for so many. Add to that the false sense of security the drug regimens appear to bring and you have a recipe for disaster. They don’t always understand the necessity of not engaging in risky sexual behaviors, much less the necessity of not sharing needles. Both behaviors still spread HIV.

Sadly, it is rare for children to receive an adequate education about HIV prevention in school, or at home, or at church or synagogue. Teaching them to “just say no” has never worked. Kids need to know in terms they understand, however explicit and direct they need to be, what causes HIV infection and how to prevent it. Talking to them about sex, teaching the use of condoms, will not increase sexual activity among young people. The high rates of teen pregnancies and STD’s are obvious indicators that kids are having sex regardless of whether or not we are talking to them about it! The most powerful educational tool that school administrators seem to find safe enough to use is the AIDS Memorial Quilt – but that alone is not enough.

It may be clear to you now that I’ve reached the point where I have stopped preaching and gone to meddling! Well I’m going to meddle some more. And I am going to be blunt.

There are powerful myths out there about AIDS and HIV. Those myths are powerful and they are dangerous. I’ve mentioned one – the myth that talking to kids about sex makes them have sex. Last week the results of a national study showed clearly that safe-sex programs do NOT increase sexual activity – a reason often cited by some groups for not using them.

There is another myth that there are no African American men who have sex with men. None are gay. If anything, they are all bisexuals. Hogwash! The same lie is told in the Latino community as well, and to some degree in the Asian community. Those myths kill! No minced words, no apologies – those myths kill people daily. Recent CDC studies show AIDS is now the leading cause of death in African-Americans between the ages of 25 and 44. And in a study done in six large cities, nearly one third of the young black gay and bisexual men are testing positive for HIV – one third, one out of three!

If you take nothing else away from here today, at least take the truth. Take the truth that more than 20 million people have died from AIDS worldwide and over 8,000 more die each day. Take the truth that HIV infects 40 million people and that number increases by over 14 thousand every day.

Take the truth that unprotected sexual activity spreads HIV. Take the truth that the virus doesn’t care what sexual orientation, social or economic status, race, creed, or religion its host might be. Take the truth that there are men who have sex with men in all racial and ethnic groups. Take the truth that denying the existence of those men can condemn them to death. Take the truth that your children and grandchildren, your nieces, nephews, brothers and sisters need to know that having unprotected sex can infect them with HIV regardless of the gender of their sexual partners. Talk to them. Share that truth. Take the truth that 4.3 million children under the age of 15 have died from AIDS.

Take the truth that there are over 18 million children who have been made orphans by AIDS.

Take the truth that sharing needles also shares infection. Take the truth that needle exchange programs slow the spread of infection and they don’t increase intravenous drug use.

Take the truth that AIDS is not a divine punishment for anything anyone did or did not do. Take the truth that AIDS is caused by a virus and that virus is spread through the actions of human beings: good people, bad people, rich and poor, black and white, red, yellow and brown and all shades between. Being infected is not the consequences of who you are. If it is the consequence of anything it is the consequence of doing something out of either ignorance or stupidity. Being infected with HIV has nothing to do with the worth or value of the human being that hosts it.

If any of us truly believes that having HIV reflects a consequence of someone’s worth as a human being, we had better be ready and able to explain why someone gets the flu or cancer or emphysema or leukemia or polio or Hodgkin’s disease or sickle cell anemia or Chrohn's disease or any other disease we could name. The truth remains that there is no connection between any diseases we might get and our worth as human beings. Disease is not punishment.

The final truth I want you to take away is the truth of my survival. You know, I can’t state with certainty why I am still on this earth. I wasn’t supposed to still be here by now. But I am! I attribute my continued good health and survival to a number of factors: I didn’t give myself an opportunity for further infection. I’ve engaged in protected sexual activity for the last sixteen years. I’ve had good quality medical care that involved me in the decisions that were made. The various drugs I’ve taken did what they were supposed to do. I have a good self-image of myself as who I am as a gay man. I don’t believe and never did believe the garbage that there was anything flawed about me.

I have a firm resolve. That’s another way of saying I’m hard headed – at least according to my parents! And I have a very strong faith in the one who created me. I know that the one who created me did not inflict this virus upon me. For me, these are the factors that sustain me and contribute to my continued survival. My goal is to live to be a hundred years old – and I’m over half way there already!

My reasons for sharing my story with you are simple: To let you know there are those who are surviving with HIV. To let you know that there is hope. And finally to let you know that you can do something about HIV/AIDS: Learn about it! Teach about it! Debunk the deadly myths about AIDS! Save people’s lives! Maybe 20 years from now, AIDS will be a disease of the past.

Thank you!

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