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Thursday, December 01, 2011

Getting to Zero

This year's World AIDS Day theme is "Getting to Zero" - in terms of numbers of newly diagnosed cases of AIDS, discrimination of people with AIDS, and the numbers of people who do not have access to antiretroviral drugs to treat AIDS.

It's all about raising awareness about AIDS but, every year, when December 1st rolls around, I wonder how many people are actually paying attention.

I mean, it is estimated that 33.3 million people have HIV worldwide, with 1.2 million persons who are living with HIV in the United States, according to the Center of Disease Control (CDC) estimates.

New infections continue at far too high of a level, with approximately 50,000 Americans becoming infected with HIV each year.

However, worldwide, the rate of new infections or incidence has decreased. In 33 countries, the incidence has decreased more than 25 percent since 2001, including countries in the hardest hit areas of sub-Saharan Africa.

The CDC estimates that one in five people living with HIV in the U.S. are unaware of their infection - which may be one of the reasons that 50,000 Americans are newly infected each year.

So, while I applaud the goal of "getting to zero" in terms of new cases of AIDS (YES! I shout enthusiastically, let's do it), I sometimes scratch my head and wonder if the message of early intervention, prevention and education of HIV/AIDS is "getting to zero" numbers of Americans.

A second component of "getting to zero" is zero discrimination for people living with HIV/AIDS. The "leper" stigma associated with HIV/AIDS is reportedly the single most important barrier to public action. It is the reason people do not seek diagnosis or even treatment.

Silence still equals death. The way to remove the silence is to remove the stigma.
"We can fight stigma. Enlightened laws and policies are key. But it begins with openness, the courage to speak out. Schools should teach respect and understanding. Religious leaders should preach tolerance. The media should condemn prejudice and use its influence to advance social change, from securing legal protections to ensuring access to health care." Ban Ki-moon, Secretary-General of the United Nations.
Amen, I say. It sounds so easy, doesn't it? A good, solid plan. The question is, why aren't we following it?  Why aren't our schools teaching respect and understanding? Why aren't our religious leaders - of all people - not preaching AT LEAST 'tolerance'? Why isn't the media condemning prejudice and using its influence to advance social change? Still?

Answer me that riddle and we may have a real shot at "getting to zero".

A third component of "getting to zero" is to decrease the number of AIDS-related deaths by increasing access to available treatments for all those infected.

More than 25 million people between 1981 and 2007 have died from the virus worldwide, making it one of the most destructive pandemics in history. In the US, nearly 594,500 people with AIDS in the US have died since the epidemic began.

Currently, only one third of the 15 million people living with HIV worldwide who are in need of life long treatment are receiving it. Universal access to antiretroviral treatments for those living with HIV will not only decrease the number of AIDS related deaths, but will increase the quality of life among those infected and decrease transmission.

Part of the problem, of course, is "Big Pharma" - the pharmaceutical drug companies with expensive, effective lobbyists.   Wiki reports::
According to the non-partisan Center for Responsive Politics, pharmaceutical companies spent $900 million on lobbying between 1998 and 2005, more than any other industry. During the same period, they donated $89.9 million to federal candidates and political parties, giving approximately three times as much to Republicans as to Democrats.According to the Center for Public Integrity, from January 2005 through June 2006 alone, the pharmaceutical industry spent approximately $182 million on Federal lobbying.[2] The industry has 1,274 registered lobbyists in Washington D.C.
Let's stop and do a little math, here. I'm thinking that $900 million + $89.9 million + $182 million = more than enough money to provide drugs for the remaining 2/3 of the 15 million people living with HIV worldwide.

"Getting to zero" is going to take shaking loose a whole lotta money from Big Pharma. It's obscene that they are spending this money to get more money for higher profit margins while people all over the world are dying for want of antiretroviral medications.

Indeed, I am going to boldly claim that part of the reason we have antiretroviral medications in the first place is directly due to the political activism of many people in the early days of the AIDS epidemic who pushed and prodded and "ACT(ed) UP" to get pharmaceutical companies and government officials to fast-track the research to make these drugs available.

Most of those activists are gone, now. They did not live long enough to enjoy the fruits of those early days of struggle and activism.

One of the most significant components of World AIDS day is to remember all those young men and women - those bright, educated, funny tender branches that were killed by an early frost in the early days of the epidemic.

Indeed, I wonder if one of the reasons we are experiencing an increase in the number of new infections in America is because we have gotten to "zero remembrance" of the ones we've lost.

I have lots of stories of the friends I've lost in this epidemic. I stopped counting after my 50th funeral because I feared that if I continued counting, I'd lose my mind and my will to fight.

I've told many of those stories here, on this blog.

I'm looking, now, at a tiny pair of shoes that once graced the feet of a little girl named Anastasia Tesi. I've placed her mother's prayer beads over them.

She was part of a young, active, loving family of five - an artist mother, a musician father, and her two older brothers.

They are all gone now. The "zero" affect of the early days of the AIDS pandemic. Wiped out by a silent, microscopic virus which ravaged their immune system, leaving them indefensible to infections and cancerous tumors.

The theory was that Anastasia's father, a weekend, "recreational" heroin/cocaine user, had shared a contaminated needle with one of his band members, infecting his wife and their three children when they were in utero or through breast milk. His wife also suspected he "might" have been bisexual.

No one really knew because he wasn't diagnosed until after he died. His eldest son died two weeks later. The next son died four weeks after that. At the time, his wife was pregnant with Anastasia, who was born HIV positive.

Both were treated with antiretrovirals, which had just recently become available. Anastasia died when she was 18 months old. Her mother died a few months later.

A family of five got to zero in two years time.

That's the way it was, back in the day. That's the way it is, still, in many places in the world.

As we're "getting to zero" - in terms of numbers of people with AIDS, in terms of ending the discrimination associated with AIDS and in terms of not denying treatment options for everyone, everywhere - I hope we remember the people and the families who are no more.

It may sound counter-intuitive, but I don't think we can get to zero without remembering every single one of the 594,500 people (and counting) with AIDS in the US - and the millions more, worldwide - who have died since the epidemic began.

I'm remembering them today.

Every last one of them.

Even though I stopped counting long ago.

It gives me courage to continue to pay attention to today.


Kirkepiscatoid said...

I still remember our standard line when I was a clinical medical student and we had to tell someone their diagnosis when they asked, "How long, Doc?" In the late 80's our answer was, "Without AZT, at best, two years. With AZT (it was only recently out) maybe longer."

Then I remember the subset of people who were afraid that AZT was another government plot to eradicate "teh ghey" once and for all. So they would not take it. They were wrong, but I couldn't blame them for feeling that way. Not one bit.

Elizabeth Kaeton said...

At that time, African Americans felt the same paranoia. Some still do. It's part of the stigma of the disease. It lingers still.