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In July 1987, I noticed a small lump on the back of my neck. I thought, “What if I have AIDS? What if the lump is cancer or some other symptom of AIDS?”
Since I didn’t have medical insurance I signed up as a client for low cost medical services offered through the County, then it was called Indigent Medical Services. “I have this lump on the back of my neck,” I explained to the doctor: “I’m gay and I think I could have AIDS.” “Well, let’s get you tested and find out, “the Dr. said.
Two weeks later the doctor reviewed the results of my previous exam; “The lump doesn’t seem to be anything major, it may be swelling of a lymph node or maybe a cyst,” the doctor suggested. “Let’s see what happens to it over the next few months, it may just go away, I wouldn’t worry about it.” As the doctor turned to leave the room I asked, “Did you get the results of the HIV test back?” Looking back down at the chart and rifling through a few pages the doctor responded, “The test was positive, but don’t worry about it, come back again in 6 months and test again.”
“Is that it? I thought. “No referral to counseling, no encouragement to practice safer sex, no referral to other services, just; we’ll see you in 6 months.” I sat in stunned silence for a moment not knowing what to think, then: “Oh god, I’m going to die.
I never returned for the follow-up visit as my doctor had flippantly suggested. In fact, I did just about everything I shouldn’t have done. Smoking, drinking, staying out into the early hours of the morning, was the rule of the day for about three years. I certainly did not seek any medical care until 1990 when I was referred to an HIV specialist by a friend.
HISTORY OF AIDS
Acquired Immune Deficiency Syndrome (AIDS) was first identified in 1981 by doctors who discovered in New York an outbreak among young gay men of an aggressive form of a rare cancer usually associated with elderly Mediterranean men called Kaposi’s Sarcoma (KS). At the same time disease control investigators attempting to determine the cause of these illnesses discovered other indications of this condition including a rare lung infection, pneumocystis carinii pneumonia, (PCP) and on June 5, 1981 the Centers for Disease Control published a report about the occurrence of PCP infections among 5 men in California. These were the first cases of AIDS identified in the United States. These people were dying and no one knew why. That same month the CDC formed a Task Force on Kaposi’s Sarcoma and Opportunistic Infections (KSOI).
Little was known at this time about how this new disease was transmitted. Knowledge was evolving so rapidly that proposed theories were proven invalid only months after they were introduced. Researchers determined that the condition was causing the immune systems of those infected to weaken and fail to fight off opportunistic infections. They began to suspect that the cause of these infections might be transmitted sexually. In early 1982 this disease still did not have an official name. The media began referring to the mysterious disease as “GRID”, or Gay Related Immune Deficiency and “gay cancer” because the patients were mostly gay men. On September 24, 1982 the CDC referred to this condition for the first time as Acquired Immune Deficiency Syndrome.
On April 23, 1984, Health and Human Services Secretary Margaret Heckler announced that Dr. Robert Gallo of the National Cancer Institute had identified the cause of AIDS to be a virus HTLV-III, now commonly referred to as Human Immunodeficiency Virus (HIV). In March 1985 the first test for HIV was licensed providing a means to identify infected individuals. People who are infected with the HIV virus are referred to as HIV-positive. Individuals with advanced HIV infection or those who have experienced one of several identified opportunistic infections, such as KS or PCP, receive an AIDS diagnosis. Until recently, HIV-infection was not a reportable condition while AIDS has been reportable to state and federal health officials since early in the epidemic.
Because of this, determining actual numbers of people living with HIV-disease and AIDS is complicated in that one condition has always been reportable and the other has not been until recently. Therefore HIV and AIDS data is reported as number of reported AIDS cases, number of living AIDS cases and estimated HIV cases. The HIV virus does not discriminate on the basis of sexual orientation and is transmitted from one person to another through blood and other body fluids.
HIV/AIDS in Orange County
Since Orange County’s first case report in 1981 until December 31, 2005, 6,671 AIDS cases have been diagnosed and reported in Orange County. Orange County ranks fifth highest in AIDS case reporting among CaliforniaÃ¢â‚¬â„¢s 58 counties. Of the reported cases of AIDS in Orange County, only 3,278 were living as of December 2005, an 84% increase since 1995. Between July 2002, when HIV infection became a reportable disease in California, and December 2005, there have been 2066 reported cases of HIV in the county. The 2005 HIV Epidemiology report is available HERE from the Orange County Health Care Agency.
19 years of HIV/AIDS Activism
While I had previously been active in fighting HIV/AIDS locally, my HIV-positive diagnosis in 1987 changed my outlook on life and my level of community activism and involvement. On the one hand, I did not seem to care about my personal well being. Instead, I focused on helping keep other from getting infected and getting care for those who were sick.
This activism in the HIV/AIDS community began less than a month after getting my test results. In September 1987 I launched with a few friends a coalition of gay and lesbian bar owners and patrons to distribute HIV prevention information, condoms, and gay and lesbian community resource information in local gay and lesbian bars. This program was successful in increasing the involvement of these community businesses in educating their customers about HIV/AIDS and other community issues.
The project started during a discussion with a local bar manager about the lack of information in his establishment promoting the first AIDS Walk in Orange County. His response to my concern was “why don’t you stop whining and do something about it?” We raised $5,000 for that first walk-a-thon and things accelerated from there. We went on to raise funds during the Christmas holiday season to buy Teddy Bears for AIDS Services Foundation’s Holiday Gift Basket program.
Because of these activities, I was asked to join the Boards of Directors of the Orange County Gay and Lesbian Center and AIDS Walk Orange County. I served for more than six years on the Gay and Lesbian Center Board from 1988 through the middle of 1994. On the AIDS Walk Orange County Board I served 1988 through 1990.
In 1990 I joined the Orange County Chapter of the NAMES Project to produce their first display of a portion of the AIDS Memorial Quilt at the University of California, Irvine. Subsequent to that event I served as a member of the NAMES Project Chapter Board from 1990-2000 and was named Chapter Chairman for two years 1990-1992, National Southwest Regional Chapter Representative for two years 1992-1994. From 1994 through 1998 as finance Chair, and then as Chapter Chair again until the Chapter ceased operations in 2000.
Concurrent with my involvement with the Orange County Gay and Lesbian Community Services Center, AIDS Walk Orange County and the NAMES Project I also served on the steering committee for the Orange County Federation of lesbian, gay, bisexual, transgender, HIV/AIDS and feminist organizations and as Chair of Being Alive Orange County from 1995-1998. I also participated in local and state HIV/AIDS lobbying efforts as a member of the HIV/AIDS Policy Committee of the Lobby for Individual Freedom and Equality (LIFE Lobby) as well as a Board member and officer for LIFE Lobby and the LIFE Institute the 501c3 arm of LIFE Lobby. I also participated in national and state HIV/AIDS Lobby days since the early 1990’s.
After the Orange County Chapter of The NAMES Project closed down, my efforts in support of HIV/AIDS issues were focused around my involvement with the Orange County HIV Planning Council.
In July 1997, I was hired to work for the Orange County Health Care Agency as a Program Supervisor. My job was to supervise and provide staff support for the Orange County HIV Planning Council. Prior to joining the Council staff I had served since January 1995 as a member of the Council and Vice Chair for 1-½ years. By February 2003, CARE Act funding for Orange County approached $7 Million annually. To say that my job with the HIV Planning Council was a dream job would be a bit of an understatement. I had the benefit of working in a field of work that I liked, which was personally fulfilling, and allowed me to participate in positively affecting the lives of HIV-positive people living in Orange County. My position as primary staff support for the Planning Council provided me with the opportunity to participate in all aspects of the planning and coordination of HIV/AIDS services in Orange County as well as play an active role in the administration of HIV/AIDS services funded by federal and state grants overseen by the Orange County Health Care Agency.
As an HIV-positive man, my involvement was part professional and part personal. As might be expected, my personal connection to HIV/AIDS, and experience and activity in Orange County, caused me to be a bit aggressive when it came to the needs of People Living with HIV (PLWH). I tend to become a bit of a “Pit Bull” on the subjects of funding and delivery of services. This has led me to occasionally rub people the wrong way if we disagree. My friends have referred me to as an effective and experienced advocate on HIV/AIDS issues, who usually gets his way or at least an acceptable compromise.
My outspoken nature ultimately cost me my position with the HIV Planning and Coordination Program in 2003 when, after reporting possible management misconduct in the administration of Ryan White CARE Act funds, I was summarily reassigned to work in the highly risky environment of the County Tuberculosis clinics for nine months. My division manager had previously threatened; “If you ever oppose me I will assign you to a place that will make Siberia look good to you.”
My allegations were eventually substantiated by federal auditors and the Health Care Agency was required to return more than $143,000 in improperly spent funds. While I no longer work in my preferred field, I’m still involved. I am currently and affiliate member of the HIV Planning Council and Chairman of the Council’s HIV Client Advocacy Committee.
When I tested HIV-positive in 1987, I expected to die in relatively quick order. Many of my friends had already died from AIDS and I figured I wasn’t far behind. I certainly did not expect to outlive the rest of my immediate family. Since my diagnosis, my father died of heart failure, my sister died from a drug and alcohol overdose, and my mother died most recently in June 2005 from cancer. I have seen dozens of my friends pass away from this disease and it seems no end is in sight.
CRISIS OF APATHY
Our federal government seems to have returned to the days of 25 years ago. In 1981, Ronald Reagan was President and it took him six years to publicly acknowledge the name of this epidemic. We are now faced with similar indifference in Congress and the White House. Current proposals in the Republican controlled Senate, supported by the President, threaten to decimate the federally funded response to the AIDS epidemic in communities like Orange County across the country. If the current proposal remains unchanged, Orange County alone could loose 80%-90% of necessary funding to support services for people living with HIV/AIDS. We will not even be able to provide basic medical services with the funds we would have left.
What this means is that people living with HIV/AIDS will go without basic medical care until they get sick enough to flood our hospital emergency rooms for unfunded medical care services. It means that rather than HIV/AIDS being a manageable chronic medical condition, it will return to being the death sentence it once was.
Please contact your elected Congressional Representative or U.S. Senator and tell them to base the funding for HIV/AIDS services through the Ryan White CARE Act on living cases of HIV and AIDS. Tell them to keep control of funding allocations in the hands of local Planning Councils. Tell them to not restrict the types of services that can be funded to only medical care. People living with HIV/AIDS who have limited incomes and resources need much more than doctors and medications to get by. We need case managers to help us access available services, transportation to get to those services, and mental health services to deal with the devastating effects of depression and loss caused by this disease to name a few.
“The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.”
– Mohandas Gandhi