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Thursday, July 18, 2013

HIV: Have We Become Complacent About HIV/AIDS in the US?

According to the latest statistics on HIV in the US...

  • More than 1.1 million people in the United States are living with HIV infection, and almost 1 in 5 (18.1%) are unaware of their infection
  • Gay, bisexual, and other men who have sex with men (MSM),1 particularly young black/African American MSM, are most seriously affected by HIV.
  • By race, blacks/African Americans face the most severe burden of HIV.

Figure1: Estimated New HIV Infections in the United States, 2010, for the Most Affected Subpopulations (from the CDC website).

Have we become complacent in our attitudes toward HIV?   We are told today that HIV is a "chronically manageable disease".    We have testing programs in every state.   We have education and prevention programs in every state.  We even have special programs (like Focus On Youth 24/7) to educate our young people on why it is important to get tested often and start treatment early if you test positive. 

Yet more and more young people are choosing to ignore the cry to use "safer sex" kits (condoms, dental dams, etc.).   HIV is no longer a problem for young adults.   According to the CDC, one in every five people with HIV don't even know they have it.  Why is that?  Is it in part due to the fact that many states have chosen to make crime to have sex with a person, when you know you are HIV+, but do not tell your sex partner before having sex?  This law in many ways has backfired from its original intention.  Instead of encouraging people to get test for HIV, it actually discourages individuals who are sexually active from getting tested.  How you might ask?   

Under most state statutes which criminalize those who knowingly have HIV, yet have sex with their partner without full disclosure are committing assault to attempted murder.  But these same states with the HIV criminalization law, state that if you have sex with your partner, and your partner gets infected from you, if you are unaware of your status, then you are NOT committing a crime - because if you don't know your status, you can't be held liable   

As a result, may individuals who are sexually active, purposely choose NOT to get tested so they can avoid being responsible if they infect their sex partner. There are even websites (underground) which promote infecting those who don't have HIV and promote those who don't have HIV, to actively seek out an HIV+ person with the sole purpose of getting infected.  They are called "bug chasers".  Sound crazy?  Well, it is..

Even with all the prevention, public service announcements, AIDS Service Organizations, and "Safer-Sex Campaigns", infections for HIV are on still on the rise.   Today, "About 50,000 people get infected with HIV each year.  In 2010, there were around 47,500 new HIV infections in the United States" (according to the CDC - see CDC Fact Sheet: New HIV Infections in the United States 2007-2010). In 2009, the CDC estimated there were 1.1 million people in the United States are infected with HIV.   Of these, one in five (1 in 5) persons don't even know they have HIV.  What can we do to change this?   How can we be better at educating?  

For reasons noted above, less and less kids (13-24 year olds) are NOT using protection and are having
Cheyenne Jackson, Actor and AmFAR Ambassador
photo courtesy of

unprotected sex.   When asked why they are not using protection, of all the responses, one of the most common response is "Why do I need to use protection? If I get sick, I'll just go on medication".   This lackadaisical and cavalier attitude has to change or we will be raising - we are raising - whole new generations who look at HIV as nothing more than an inconvenience, or like any other chronically manageable disease.  They don't feel the fear that my generation felt.  

I was in my senior year in high school when HIV hit the US in a small groups of gay men in San Francisco.   Originally called "gay cancer" (due to one of the most prevalent symptoms being noticed by physicians - Kaposi's Sarcoma).  Later it was discovered what KS typically only affected those of Mediterranean descent.  Then it was called "GRID" - Gay Related Infectious Disease).   As the medical community reeled from trying to figure out what was going on with this alarmingly fast spreading set of symptoms among gay men, another term began being used to describe those symptoms which seem to be occurring more and more frequently - ARC (AIDS Related Complex). When the barrier from gay men to other segments of society began (such as hemophiliacs who were receiving tainted blood transfusions for their hemophilia), fear finally began to grip the general population of the US (surprisingly even today, HIV is thought of as a "gay disease".  So if I am straight, then I don't have to worry about it - wrong). The first treatment was AZT.  Typically those treated with AZT did not die from HIV (or actually the opportunistic infections), but from the actual treatment itself. Today we have dozens of antiviral drugs, most of which have mild to moderate side effects.  But is this a good thing?   Or does it stall the push forward to a cure? Pharmaceutical companies can make more money on managing a disease, than curing it.

Programs like Focus on Youth 2/47 are being implemented today to help try and turn the tide of attitudes of complacency and complete lack of fear by youth.  Never mind youth already have a normal predisposition to having no fear of death because for them, death is something that will happen for them far in the future, but the very effective treatments we have today for managing HIV allow individuals to live a relatively normal life span.  The medicines have become more effective, and less are needed.  The medicines have become less toxic (don't make people sick to their stomach as much when taking new anti-retrovirals).   Complacency seems to have set in, especially for youth.  But even still, this complacency is not just confined to young persons.  

This week the President Obama signed an Executive Order to help increase the continuity of care (that is people who start medicines, remaining on their medicines faithfully).  The reason is that today of all those who start treatment for HIV, only 1 in 4 actually make it to long term prognosis of a normal health life span according the White House Office of National HIV/AIDS Strategy.   Even those that get tested, and start treatment, do not feel the sense of urgency to maintain their treatment.  Maybe because they don't see a need to take medicines because they feel no symptoms and don't look sick.  But yet this is the insidious nature of HIV.  It gives people false sense of security because the from the time of initial infection to the onset of symptoms can take a decade or more.   And once symptoms actually start occurring, the survival rate of those infected by going on treatment is much much less, then if they started and stayed on their medicines right after they found out they were HIV+. 

According to an article in the latest edition of POZ Magazine,  research concludes that the sooner individuals start HIV treatment after finding out they are HIV+, the more likelihood they will not develop complications from their condition and will have a much better chance of living a normal life span, truly making HIV a chronically manageable disease (see   And this is another insidious nature to HIV.  The very treatment to make people maintain a healthy lifestyle.  It is only chronically manageable if you start treatment early, and remain faithfully on treatment.  For now that means the rest of an HIV+ person's life.   

According to Actor Cheyenne Jackson in a recent article in the online magazine "Queerty" (see, he is "irked" at the ignorance of youth.
Following the Outfest screening of The Battle of amfAr, a documentary from Oscar-winning director Rob Epstein and Jeffrey Friedman, on Sunday, Jackson expressed that he is irked that some young people are so uneducated about the struggles gay people have faced and their general indifference to the AIDS epidemic.
“It’s the arrogance of youth,” Jackson suggested. “The lack of education, especially among the twenty-somethings, they don’t know their history and it pisses me off. I talk to these 22 or 23 years olds and there is so much rampant unsafe sex and they think, ‘Oh, I’ll take a pill’…Half of them don’t even know what Stonewall is and I just want to knock their heads together.”
So maybe what is needed is a little "Shock Therapy".  If more and more people who are living with HIV would share the downsides of HIV, as well as the "positive" aspects of HIV, maybe more youth would start taking seriously HIV/AIDS, start getting testing regularly and start medicines right away.  Maybe if youth actually knew what those who become HIV+ must go through just to qualify for Ryan White so they can receive their life-saving medications.  Maybe it might help.   So what really are the downsides?   What exactly do persons who discover they are HIV+ go through as it relates to the downsides of having HIV? 

Here's what happens, at least in Indiana today...
  • Divest yourself of any personal assets.
  • You must be enrolled in Social Security Disability. The average SSDI income for kids 30 and under is between $500-1200 / month. Try living on that
  • Now that you are on SSDI, you cannot work or you lose your SSDI, and then access to Ryan White.
  • You must enroll in Medicare.
  • You must meet with a Care Coordinator at least every 6 months
  • If you are still living at home and you become HIV+, there is risk you will be disowned by your own family (1 in 4 teens who come out to their parent and tell them they have HIV are kicked out into the street - there are over 500,000 homeless teens in the US from contracting HIV alone).
  • By state law, if you engage in sexual activity after you find out you are positive , you can be guilty of attempted murder (which in turn actually encourages kids to NOT get tested, because if you don't know are HIV+, you are not liable for any crime).
  • If you are positive, but still feel fine and are asymptomatic, you may think you don't need meds until between 10-12 years later you become so sick, you become hospitalized.
  • If you don't go on meds and wait till you are sick, you can develop PCP, MAC, MRSA, VRSA, and may have less then. 5% chance of surviving.
  • You develop neuropathy which is so painful, you have to go in Pain Management to control your pain so you can at least perform Daily Living Activities.
  • You begin to age twice as fast before you were HIV+
  • You might have health issues you normally wouldn't experience until your 70s, like a hip replacement in your 40s.
When kid say, "if I get sick, I'll just take meds", they don't think of the downsides listed above and this is just the beginning.   

We must Educate, Prevent, Protect, and Inform.  And we MUST TELL THE DOWNSIDES to HIV as well as the more palatable "upsides" of being HIV+.  We must tell kids that avoiding HIV IS SO MUCH BETTER with safer sex and protection, then living the rest of their lives with all of the above!  We must tell youth that the damage done by HIV, if they don't get tested often, and close the gap between the time they become infected and starting on those life saving medicines damage will aleady be done.  We also must love our children, no matter what disease they develop - love them and care for them.  Once the HIV virus damages the body (like nerve cells causing permanent neuropathy), it is not reversible.

 Rev Brother Jeff Wolfe serves as Executive Director and member of the Board of Directors of The Kristen Center, an interfaith, Not for Profit, community based organization dedicated to providing programs and services to those with HIV and those who care for them.   To learn more about The Kristen Center, visit their website at and their Facebook page at

1CDC. Monitoring selected national HIV prevention and care objectives by using HIV surveillance data—United States and 6 U.S. dependent areas—2010. HIV Surveillance Supplemental Report 2012;17(No. 3, part A). Adobe PDF file. Published June 2012.