Today December 1, 2008 is the 20th anniversary of World AIDS Day. This year’s campaign slogan is “Stop AIDS. Keep the Promise.” But I’m not big on slogans – I actually find a slogan to be offensive. I’ve been living with HIV/AIDS over 20 years and to me it is NOT a slogan, it is my life. Raising awareness of the pandemic in a pithy slogan tied with a red ribbon annoys me.
Today for many there will be ceremonies and memorials. There will be speeches and promises. There will be reminders of the global pandemic and the devastation in Africa and around the globe. US elected officials will also fit in references to the toll of the epidemic in the United States.
Today for me there is frustration, anger and a glimmer of hope. As attention rightfully focuses on countries around the world that are being devastated by HIV/AIDS it seems there is scant focus from elected officials and the general public on the epidemic in our own backyard. Ironically the United States requires countries that get funds from The US President’s Emergency Plan for AIDS Relief (PEPFAR), yet this country has yet to develop one. The national response to HIV/AIDS has been a patchwork quilt with little cohesion. Clearly we need a National AIDS Strategy and President-elect Obama has pledged to have his administration lead the effort in developing one. I am putting a lot of faith into what the 44th President of the United States and the 111th Congress are able to accomplish for people living with HIV/AIDS in particular and healthcare reform in general.
But HIV/AIDS in the United States doesn’t have the sense of urgency it once had although 1.1 million Americans are living with HIV/AIDS and 56,0000 new infections occur annually.
I started working in HIV/AIDS public policy in 1995 the same year that the Federal Drug Administration (FDA) approved the first protease inhibitor. 1995 seem to be the turning point for the attention paid to the epidemic in the United States. Believe me I am grateful for these drugs, I wouldn’t be alive today without them. But as with most good things there are unintended consequences. We live in a world where taking a pill is the answer to everything. The 1980’s and early 1990’s were painful and once a pill came along it was natural to want to run away from that horror and focus elsewhere. Those two mindsets have made focusing on the epidemic in this country incredibly challenging. It seems that my entire tenure in HIV/AIDS policy work has been at a time where less and less attention was being paid to the epidemic here and I feel like I have been treading water for the past 13 years- with the last 8 being the hardest. Not coincidentally those 8 years are the same years that George W. Bush has been President.
But it’s easy for me to pay attention to the epidemic here- I live it, I know that life with HIV/AIDS is no picnic- medications or not. Let me tell you about that.
I have changed drug regimens more times than I care to remember. As one begins to fail, we start another. Now I am on what is known as “salvage therapy” drugs that are used when there are few options left. Some of the drugs have had horrible side effects- fevers, chills, diarrhea, fatigue, depression to name but a few- not fun. Believe me the drugs have helped me live longer but sometimes the quality of that life has been pretty poor.
My doctor has told me that my health is fragile. HIV/AIDS plays out differently with different people. Some have robust lives- that isn’t the hand I was dealt and I know that I am not alone. When I get a cold it invariably ends up as bronchitis and often as pneumonia. As a matter of fact, as I write this, the cold I have had for the last week seems to be moving in that direction. I also have a co-infection of Hepatitis C
I am but one of 1.1 million people each with a unique story -each of us with unique challenges. I am fortunate; I have good health care, a good support system and a wonderful partner. But even with all of that good fortune living with this disease is not easy. Many of my fellow 1.1 million brothers and sisters are living in poverty, not properly housed or not housed at all, some are living with mental illness, and some have chronic substance use issues- it is beyond my comprehension to fathom how difficult their lives are.
Those of us who do advocacy on HIV/AIDS issues use statistics to make our case to policy makers, we use epidemiological data to make decisions on how to best utilize the woefully inadequate resources we have. Numbers are safe; they are anonymous- but behind those numbers, behind those statistics are individuals who are somebody’s son or somebody’s daughter. Each one of us 1.1 million has a life that is precious.
It is often difficult to comprehend the enormity of the toll HIV/AIDS continues to have until you think of each person within that 1.1 million and the people whose lives each of us have touched. With that sobering thought maybe many of my fellow Americans will pause today to ponder the impact of HIV/AIDS on our nation and maybe, just maybe they’ll think about it more than once a year.
You can make a difference today by taking two minutes to endorse the call for a National AIDS Strategy please go to www.nationalaidsstrategy.org . If each person who has been touched in some way by this epidemic would sign on we would be millions strong and our collective voice could not be ignored – we would be a movement and rekindle our nation’s awareness of HIV/AIDS in the United States of America.