Today is World AIDS Day. I was rather disheartened to see barely a blip on the news this morning’s “Today Show”. If it had not been for someone in the crowd outside the Today Show’s studio giving a red ribbon the Meredith Viera there would have been nothing mentioned at all.
This morning’s New York Times had a pullout section which was a World AIDS Day “community education” advertisement by Glaxo Smith Kline.
Of course the AIDS community- those that provide services, advocates for issues that affect HIV/AIDS care and prevention and people living with the disease are aware of this day of remembrance and awareness. But for the general pubic the day seems to go by with faint and fleeting interest if any at all.
Why is that? According to UNAIDS approximately 47 million people worldwide are living with HIV/AIDS. There are approximately 3 million children living with the virus throughout the world. And 25 million people have died from HIV/AIDS leaving some 12 million AIDS orphans throughout Africa.
What about at home? If one looks at all of the attention that the epidemic abroad has from celebrities, foundations and even the Bush administration, one would think that it really isn’t a problem here anymore. It has been relegated to the status of a chronic illness that affects the most disenfranchised members of our society. But there are more than 415,913 Americans currently living with AIDS. This does not include people who are HIV + but have not progressed to an AIDS diagnosis (HIV case data started to be collected in some states a number of years ago- but only within the last year has HIV case reporting been collected by all states and territories). The total number of people living in the USA with HIV/AIDS is thought to be between 1,039,000 and 1,185,000.
In June 1981, the first cases of what is now known as AIDS were reported in the USA. During the 1980s, there were rapid increases in the number of AIDS cases and deaths of people with AIDS. Cases peaked with the 1993 expansion of the case definition, and then declined. The most dramatic drops in both cases and deaths began in 1996, with the widespread use of combination antiretroviral therapy (ARV). The rate of decrease in AIDS diagnoses slowed in the late 1990s. After reaching a plateau, the number of diagnoses increased slightly each year from 2001 to 2004. There were an estimated 42,514 diagnoses in 2004. In total, an estimated 944,306 people have been diagnosed with AIDS. The number of deaths among people with AIDS remained relatively stable in the period 1999-2003, before dropping slightly to an estimated 15,798 deaths in 2004. Since the beginning of the epidemic, an estimated 529,113 people with AIDS have died in the USA.
During the 1990s, the epidemic shifted steadily toward a growing proportion of AIDS cases among black people and Hispanics and in women, and toward a decreasing proportion in gay men, although this group remains the largest single exposure group. Black people and Hispanics have been disproportionately affected since the early years of the epidemic. In absolute numbers, blacks have outnumbered whites in new AIDS diagnoses and deaths since 1996, and in the number of people living with AIDS since 1998. From 2000 to 2004, the estimated number of new AIDS cases increased in all racial/ethnic groups. Over the same period, the estimated number of new AIDS diagnoses increased by 10% among women and by 7% among men. The number of new cases probably due to heterosexual contact grew by 20%, and the number probably due to sex between men grew by 15%, but the number among injecting drug users fell by 12%.
What about my own city? As of December 31, 2005, a cumulative total of 26,609 San Francisco residents were diagnosed with AIDS. This comprises 19% of California AIDS cases and three percent of cases reported nationally. As of December 2004, San Francisco was ranked third in the cumulative number of AIDS cases and ranked seventh in the AIDS incidence rate in 2004 among metropolitan areas nationwide. I am one of those men. I have been part of that statistic since 1997. Approximately 25% of gay men in San Francisco are living with HIV. That is one in four – a staggering statistic.
But – Most folks wouldn’t know that World AIDS Day is today if they were asked. The attention has shifted. There are some understandable reasons for the shift of attention, but it is deeply disturbing that the attention to the epidemic domestically has lost momentum and the public isn’t all that interested anymore.
Yes- there have been remarkable advances in treatment that have given those of us living with HIV/AIDS the prospect of a much longer life. However these drugs are expensive. Mine cost approximately $24,000 a year. Thankfully I am covered by my insurance and the California AIDS Drug Assistance Program (ADAP). But the access to treatments is not consistent throughout the country. Many states have poorly funded ADAPs due to lack of state resources committed to this state / federal program. Oh yeah- and don’t forget the 46 million Americans who have no form of coverage for their healthcare; undoubtedly there are many people living with HIV/AID that are among them.
My fellow AIDS advocates and I (I have played a minor role in this work and have worked with some amazing and dedicated people) have done the best possible job to cobble together a patchwork of programs to assist people living with AIDS so they can access health care, retain their healthcare, adhere to complex treatments and manage the vast number of social and economic issues that most of them encounter. However, there is never enough funding; there is never enough flexibility with those insufficient dollars to create innovative programs of care and prevention.
We are saddled with the conception that prevention messages are easy- “use a condom” or better yet – “abstinence until marriage”. Prevention is complex. AIDS is complex. People make choices about their sexual practices through the prism of deeply personal emotional and psychological experiences. Intimacy, self esteem, are obvious issues- but what about the very real issue that all animals have the natural instinct to procreate and with a chronic life threatening illness walking hand in hand with the natural instinct to reproduce there is a perversion of reality. These are big issues.
And that is just the problem around the sexual transmission. What about IV drug use? Our society is wildly contemptuous of drug users and in essence considers them as expendable and a burden on “good people”. There is great resistance to meaningful prevention for this population. The most obvious intervention is syringe exchange or syringe access programs. But the federal government believes that this would encourage drug use and many communities throughout the country have similar beliefs. Of course harm reduction protocols like syringe exchange are only a band aid— they lessen HIV infection- but they don’t really do anything about the root cause of drug use. Poverty, hopelessness, fear, mental illness are the areas that need to be addressed in order to deal with the drug problem in this country. Warehousing non violent drug users in prison with no meaningful recovery programs available to most prisoners is an absurd and head – in – the – sand policy. It does not lead to addicts being able to lick their addition and it is horribly cost INEFFECTIVE.
So AIDS in this country deals with sex and drugs- topics that Americans are not at all eager to discuss and confront with compassion and honesty. These two areas are among the least comfortable areas for policy makers and elected officials to discuss candidly and effectively. After all we live in a country where many believe that there is some sort of national morality that is sex phobic and sees drugs as the problem and not the societal forces that lead to drug use as the core problem.
Well it was fine for AIDS to be the disease “du jour” when we were all dying. That made us victims. It made us pitied. But now- we have the opportunity for a longer life and the public would like the core groups of people affected by HIV/AIDS to just go away- gay men, IV drug users and people of color (many within all of these groups are also living in poverty). We don’t like to see these people in our pristine world- the world that we convince ourselves exists – but isn’t the real world at all.
So- as we have begun to live longer the focus has moved abroad. Of course the epidemic in
Africa is beyond horrific and deserves resources and time and focus. But I personally feel that it has become “easier” to focus attention on AIDS in Africa than it is to confront the ongoing problem of AIDS in the USA. In Africa AIDS predominantly affects heterosexuals, children are left orphaned and the poverty is overwhelming. Additionally it isn’t here- it is safely “somewhere else”.
There needs to be a recommitment from our citizenry to address HIV/AIDS in the USA. We should not diminish our support of those with HIV/AIDS in Africa or other parts of the world- but we should not compromise our attention locally either.
One simple solution is to address HIV/AIDS in the USA is fairly simple and would be beneficial for all Americans. Universal Health Care! We are the only industrialized nation that does not offer some sort of health care for all of its citizens. Health care policy has too long been under the influence of pharmaceutical companies, insurance companies and for profit health care leading to a a system of care that works for them but not for the patients. Our system of care that is not equitable, not accessible by a substantial number of our people and incredibly cost ineffective (administrative costs are much higher in the private sector than in a program such as Medicare).
The second solution is to get over our fear about sex and drugs. We must have candid conversations about these topics and confront them with the sensitivity, rigor and intelligence that might allow us to create STD and HIV prevention programs that actually work and allow us to cut off drug use by addressing its root causes.
My personal journey with AIDS has been my own journey- there is no one way to have AIDS. The disease manifests itself differently in each one of us. Some of us have less tolerance for some treatments, some of us have resistant strains of HIV. We also live the life of a person with HIV/AIDS through the lens of our life experience. I use my disease as a catalyst to help create a better life for me and my peers.
The anger and the fear have motivated me to focus much of my life on HIV/AIDS advocacy and planning. Other people handle their disease in other ways. I tend to intellectualize and avoid the feelings associated with my disease. It is easier for me to be angry and harness that anger for a positive purpose (ideally) than to deal with my fears and my grief associated with HIV. Some develop a very strong spiritual life- I haven’t done that very successfully. I guess I am still pissed at the Universe that this disease exists. That anger has made it difficult for me to approach spirituality and God with the faith necessary to dispel my rage. A rage that cannot comprehend that God has allowed so many to die and suffer from HIV/AIDS and that so many unspeakable horrors exist on this planet.
Someday I may be able to approach God without so much anger. But right now that anger motivates me to do what I can to make life just a little better for me and my brothers and sisters living with HIV/AIDS.
But today I ask for your prayers for all people living with HIV/AIDS and those that are affected by the disease. I ask that we all commit ourselves to re-focusing some time, money and attention to the epidemic in this country while increasing our commitment to the needs of those affected in Africa, Asia and other areas of the world. We must begin to look at all people on this earth with compassion, respect and dignity. That would be a REMARKABLE step to addressing HIV/AIDS and many other problems that exist in our world.