World AIDS Day 2015: Did you even notice?

December 1st is World AIDS Day. It has been for decades, and will continue to be for decades to come. Yet, did you even notice?

Years ago, I was venting to my dad about how I wish people used social media for intelligent conversation and to spread important information instead of posting pictures of their outfits and arguing over inaccurate news stories. He looked at me and said "make Facebook what you want it to be", suggesting that I ignore all my boring acquaintances and follow organizations that I believe in, instead. So that's what I did. Twitter, Facebook, and eventually Instagram. I follow government organizations relating to public and global health, nonprofit organizations, scientists, museums, etc.

But, today, I found myself frustrated again. I was looking forward to seeing posts about World AIDS Day, but I saw TWO posts on facebook, and only FIVE quick tweets (80% of which were from US government organizations like Health & Human Services or the CDC).

So, why don't we care about HIV and AIDS anymore? Why has HIV and AIDS turned into a docile disease?

I have a few theories about this:

1. We're inundated with articles about how "A CURE IS RIGHT AROUND THE CORNER" or about "ONE MAN: CURED OF AIDS".
 Don't get me wrong, I have complete faith in the scientific research community and the medical community, but I'm tired of things being announced or declared in a way that isn't really all that true. We are already in an age where there is a huge distrust of science, so when breakthroughs are made, results are expected immediately. When we talk about "curing AIDS", I imagine the general masses imaging taking a huge red marker and checking a box. But, we've seen with every drug trial (I'm especially thinking of cancer drugs and the public outcry as a result of some of the waiting periods), results aren't immediate. We don't go from test tube to mass production of a perfectly effective drug. Even with animal trials, many times there are unforeseen side effects or changes in dosage efficacy.

Not to mention, the "curing" or "clearing"  of HIV has not had a lasting effect. The incredibly invasive, extensive, and expensive procedures that lead to the initial news stories are simply not feasible for everyone (and even most people!). But the realistic side of the story is often not included.

I don't say this in any way to minimize the great advancements we've seen with antiviral treatments. We are in an age where many people who are infected with HIV are living long, healthy lives as a result of treatment options and lifestyle changes.

2. HIV isn't as scary as other emergent diseases and infections.
How can we take HIV seriously as an ongoing threat if we hear about something new, unknown, and terrifying every week? There are many factors that go into viruses breaking out of a small region and spreading to previously unaffected areas. But, we are in an age of emergent diseases. Ebola has been around for decades, but up until last year, most people had never heard of it. Zika virus was isolated in specific regions of sub-Saharan Africa and Southeast Asia, and suddenly, this year, more than 14,000 people have been infected in Salvador, Brazil. Kissing bugs are in 26 states, and Aedes mosquitoes have been moving in to California for a few years now. Chikungunya is in the Caribbean and certain parts of Europe.

With scientific distrust, comes fear. Everyone is too busy fearing new viruses to remember that HIV is still here.

TEM micrograph of budding HIV virions

3. Young generations haven't experienced death from HIV and AIDS. Young generations haven't experienced the disease revolution.
The largest recorded ebola outbreak in human history happened (is still happening, albeit slower) happened in an area of the world with which most people are still not familiar. The cases that caught the most media attention were Americans that received experimental treatment.

Younger generations aren't familiar with the fear and death associated with HIV in the 80s and 90s. They aren't familiar with the imagery of that time. They aren't familiar with the huge and devastating number of children that have HIV.

This lack of realistic knowledge and awareness of HIV and AIDS has lead to incredibly sad facts, such as: 60% of HIV positive youths are not aware of their HIV status.


Speaking of statistics, its estimated that 34 million people worldwide are living with HIV.
I recently attended the American Society of Tropical Medicine and Hygiene (ASTMH) annual conference, and I collected some really devastating statistics. As of 2013, it was estimated that 3.2 million children were living with HIV worldwide, and less than 25% of them were receiving antiretroviral therapy (ART). That was almost 3 years ago.

With the bleak statistics of the number of people living with HIV who don't know their status and the number of children with HIV, we are not in the position to say that HIV is not a threat, or that "we can see the end of AIDS by 2030". If we aren't even acknowledging World AIDS Day anymore, then how can we see a future without HIV and AIDS?

Take this matter into your own hands. Get tested regularly.

World AIDS Day 2014

World AIDS Day 2014 Poster from CDC.gov

This morning I scrolled through the last few years of entries on this blog, looking for a World AIDS Day post to which to link. I then realized that I am lazy and less empowered than my younger self. My whole world used to be consumed by HIV, so to speak.

While in high school, I learned that one of my most honored relatives was HIV positive, and I instantly changed my path to learn everything about the unknown. They didn't stress how scary this virus can be, and usually is, while I was young. It was a monster from the 80s that wasn't scary anymore, which is entirely inaccurate (well, not the 80s part). All of the sudden, someone I knew had been infected, and by the time I went to college, that number had exploded.

I ran the free HIV testing clinic in college, and advocated for a better educated, a more empowered sexually active youth culture. I volunteered and then later worked for Planned Parenthood, and supported every client without judgement. As a health educator, I taught college freshman, whom had never had any exposure to sex ed, about the basics: everything from basic anatomy, dispelling menstruation myth, STIs, etc. I even researched HIV for my graduate thesis. There was a time in my life where I felt like I was talking about HIV every day. But people still weren't concerned.

New statistics show that only 4 out of 10 people in the US who are infected in HIV in 2011 were receiving HIV-specific medical care (meaning regular monitoring, access to medication, viral suppression, etc.). Approximately 3 in 10 people with HIV in the US had achieved viral suppression, which is a critical factor in continuing to live and thrive with the infection. According to the CDC, 76% of people who receive HIV medical care achieve viral suppression. That means 46% (yes, almost half) of people with HIV in the US either don't have access to adequate care, don't know about it, don't know that they have HIV, or are refusing care. I shouldn't have to point out that these are only statistics for the US, and access to care on a global scale is much worse. 

via CDC.gov

Now that I've made my way back into my field (after my 3 year stint with NASA),  I find myself getting really frustrated and feeling really helpless about HIV. It wasn't until this year that I realized how distanced I've become. Honestly, I'm a little embarrassed, because this is such an important topic for me.

So, I'm going to strive to reinvent my commitment to advocating for patients, for access to care, for continued funding, and for access to real education. We need to be frank about this subject, because it's not going away anytime soon. As far as I'm concerned, we probably wont find a cure within the next 10 years (as some people are claiming), and even if we do, the focus needs to shift to continuing to support those who are infected, and those who are at risk of becoming infected.

Even though World AIDS Day is coming to an end for this year, make it a point to start talking about HIV, and get empowered to get tested regularly. Use the resources that are available in your community, and learn how you can protect yourself. AIDS is everywhere, and we need to stop pretending that it's a thing of the past.