Others like me...

It had been a while since I had attended a conference or other activities centered around health advocacy. This was partly due to a choice that I had made to focus more on myself as well as simply focusing on my career and recent return to the classroom to work on my Master of Social Work at Saint Louis University's School of Social Work. All in all, life had been going well. There is was this strange duality that I had felt, we fight to be healthier so we can have "normal" lives yet sometimes we don't live healthy lives... I have found that as of late I have not made as many videos as when I first started making them. When I was first diagnosed with HIV on June 6, 2011 making videos was therapeutic for me. It was my way of handling my diagnosis.

I found my voice and through it all I shared my life with viewers from around the globe. Many who would tune to YouTube in their hour of despair to find that there was someone else like them. There was someone living with HIV and that made them feel better. This was even something that I had done when I was first diagnosed. There is this natural desire to reach out and to feel that we are not alone in a world that is changing directly under our feet. A world with which we are not familiar and we do not yet know all of the rules or implications. 

After a period of time things "normalize" and we settle into our new health routines. We adjust to the limitations or changes which occur. What was once unfamiliar and scary now is simply part of our DNA. So it goes for my work on youtube and other health advocacy. When I saw a friend post about the Healthevoices16 gathering in Chicago, I instantly knew that I wanted to attend. Thanks to Janssen my travel and hotel arrangements were covered so that was one less thing that I had to be concerned with. My sole purpose was to meet with other health advocates and to learn how to better care for myself and also how to improve my health advocacy. Below are a few of the things that I walked away with after a truly amazing weekend!

1. The team at Tonic Life Communications was simply amazing!

I have never met so many amazing people who were genuinely concerned with our well-being and how we were feeling. This wasn't simply an act or just a job to them. The entire team clearly loves their job and it showed! Personally, I am biased towards Rachel Yurchak. She is amazing!!! I had the amazing opportunity to have her in my small group dinner on Saturday night. Rachel is a beautiful person who is making the world a better place. 

2. Janssen is genuinely concerned with patients!

This was nevermore apparent than during the opening remarks when leadership from Janssen welcomed us. As we went into the evening we were all amazed as we were greeted by the Executive Vice President of Pharmaceuticals, Joaquin Duato via Skype! His passion towards clients was clear and his energy came through the screen as the room interacted with him. He even shared a touching story about his grand-mother and her health journey.

3. I met so many amazing health advocates from across all health conditions. 

Sometimes it is easy for us to think that we are alone in this fight against whatever health condition we are dealing with. For the first time ever, I was in a room with more than 90 other health advocates who are just like me. No, not all of them were living with HIV but they all know what it is like to get a diagnosis that will forever change their lives. I also had a moment of clarity when I realized that as a person living with HIV, it impacts my life and health in such a small way. As I listened to others share about their health journeys, it made me realize that it doesn't matter what the diagnosis is; we are all on the journey together. That was one of the things that we all had in common. We had started as health advocates because we wanted to have control over our lives and our health. 

4. Josh Robbins... need I say more? 

This was the first time that I had the honor of meeting Josh. I felt like I had come to know him through his videos but let me tell you... I cannot say enough good things about him. Besides being a social butterfly, he is an overall great person. 

I am so glad that I sat in on his session on how to improve the use of video in our health advocacy. Did I mention the fact that Josh is a genius!!! If you ever get a chance to attend one of his sessions, do it! You will not be sorry. 

His personality had us all in stitches and his positive attitude is truly contagious. Not to mention that his momma is just as amazing! It isn't hard to see that the apple doesn't fall far from the tree. 

5. Self-care, Self-care, Self-Care...

There were so many great sessions to sit in on however one of the sessions which stood out was about self-care. As I sat in on the session I heard others share feelings that I thought I was the only one who felt that way. When I first started blogging I loved to do it. Over time that joy began to fade and it began to be more of an obligation. What the session taught me is that in order for me to be able to help others, I have to take care of myself first and foremost. 

6. There are so many great HIV advocates and I got to spend an entire weekend with them!

Benjamin Di'Costa, Bob Leahy, Brian Ledford, Guy Anthony, Josh Robbins, Joshua Middleton, Kevin Maloney, Wayne Bristol and Kamaria Laffrey. I was so amazed by each and every one of them. Each of these advocates are doing their own thing in order to help others. Kevin and I go way back to 2012 when we were at the International AIDS Conference which was hosted in DC. That even forever changed who I was and would become and I was glad that I got to share it with my friend!

I had been around Benjamin before while attending AIDS Watch however I had not taken the time to really get to known him. He is such an amazing guy who is really passionate about the work that he is doing. I also learned that his meme game is on point when it comes to twitter!

I especially loved meeting Bob Leahy for the first time. Bob actually gave me my very first interview when I started as an HIV activist. 

There is nothing that reenergizes me than being around other advocates who are simply working to make the world better. We do what we can with what we have.

7. My work will never be done until we all have better health!

Have you ever met amazing people and you know that they have been placed in your path for a reason? There has never been a statement that is more true with two amazing women pictured to the left! 

In full disclosure, I was considering not attending the small group dinners on Saturday since I was getting tired. I did and I am so thankful that I did. Jen Campisano and Ann Marie Otis were part of the group that I was assigned to that night. As we began to talk we shared our various health journeys.

 We laughed, we cried and by the end of the evening they said that felt empowered by me but I have to tell you that I was empowered by the both of them! It was by this point that I truly began to understand the theme of the weekend "deeply rooted connections". As we parted the weekend to head back to our homes, there was no doubt that the friendships and relationships which I had formed at Healthevoices 16 would be long-lasting. 

8. If you don't know who Britt Johnson is... look her up!

Britt Johnson, also known as the hurtblogger is amazing. She is not afraid to stand up and challenge the status quo in order for patients to be heard. Let me just say that I want Britt on my side any day of the week!

Final Thoughts...

So what did I take away from HealtheVoices16? I walked away knowing that I am not alone. There are others who are just like me in the world. There are people who are living with health conditions and they are simply doing their part to empower other patients to live the best possible lives that they can live. For me, healthevoices16 reminded me that I need to build time into my hectic life in order to care for myself and to love myself. 

Janssen thank you so much for an amazing weekend. I will definitely be at #Healthevoices17!!!

CDC Report Doesn't Tell the FULL Story...

Half of gay and bisexual black men and a quarter of gay and bisexual Hispanic men will be diagnosed with HIV in their lifetimes, the Centers for Disease Control announced in a first-of-its-kind study on Tuesday.

While the lifetime risk of a positive HIV diagnosis has fallen from 1 in 78 Americans overall in 2005 to 1 in 99 today, the decline has not been distributed equally among the U.S. population. For the foreseeable future, the CDC estimates that gay, bisexual, black and Hispanic people will continue to bear the brunt of the HIV epidemic. The new study is the first time that the CDC has estimated lifetime HIV risk based on race. This was part of a story which was reported on by Samantha Allen of the Daily Beast.

In the last 24-hours I have seen many people's opinions about what this means and going a step further to determine  why this is the case. This was part of a response which was provided by Charlay Banjee

"What I've been thinking is that no where in the CDC report does it point to the following as factors of HIV contraction for Black MSM: stigma, racist medical practices, heteronormativity, lack of self-efficacy, historical lack of cultural competency especially in consideration of intersectionality within msm populations, economic disenfranchisement, lack of Black-led health centers (non profits and hospitals/clinics included), HIV medicine-induced illnesses...

Also missing is how "msm" communities and practices therein have specific needs that no universal plan of action can "fix." The myopia of using "msm" as an all-inclusive label speaks to the laziness of the CDC in recognizing that Black queer- and straight- identified people are complex. Black DL men do not have the same concerns as openly gay Black men. Some "men" do not identify as men. The young do not live as the older. Those who try to claim risks for a community need to know the community. The CDC does not know.

Reports like this increase the anxiety that perpetuates the same behavior that puts ppl at risk for contacting HIV. Dr. Jeffrey McCune said it best that we need paired with these reports possibilities of getting toward a lower rate of contraction. Also, the panic over the 1 in 2 number, though understandable as we want fewer people contracting HIV, speaks to our overall internalized stigma of the virus and too shows rightfully so what little faith we have in current modes of prevention. It's a thin line: prevention for health's sake versus prevention for alleviating our own fear.

We can do the work but I'm not sure we know anymore what that work looks like because for so long it has been the antithesis of Black radical empowerment. I don't have the answers, and it's ok that we don't. We've yet to be honest enough."

As a person who has worked tirelessly regarding HIV education and prevention the statistic was not surprising. Additionally it is a known fact that HIV prevention occurs in cycles. The money and focus was on white MSM early on and then their numbers started to drop. Then the money and focus gets moved to the next group. We know that there are social inequalities which contribute to HIV exposure. Poverty, lack of education, drug use and the list goes on. What is the answer?

CDC data collection and reporting leaves a lot to be desired in every realm of epi-data. The purpose of the data which was reported at CROI was to sound an alarm, which those of us working in HIV prevention, has already known. Human behavior is very dynamic and complex. That being said, communities of color will have the best chance of tackling HIV rates in their own communities. "Nothing about us, without us." This is why we have been trying to engage the faith-based communities and leaders to take the lead on HIV. This has been something that many will not do. When was the last time that we heard Reverend Al Sharpton talking about HIV infection rates in the black community? 

Dr. Jeffrey McCune shared his thoughts regarding the announcement of the data by saying, "Scientific Racism is when scientists predict 50% of "black gay men will have HIV" before it even acknowledges that we exist outside a larger white gay paradigm. Consequently, suggesting something to the tune of "if you black and gay HIV is inevitable, just cause you black and gay." And to that point, scientific racism is when such predictions aren't immediately followed up with preventative measures to curb such probability. Finally, I am curious as to what such predictions do in terms of discouraging HIV-testing and conjuring all types of anxieties around sex and sexuality within the black gay community, as well as the impact of such salacious news within the communities in which they live, reside, and love."

Please let me know you thoughts regarding the release of this study and this data...

Day 6: Fatigue and Tingling on Stribild

So today is day six on Stribild and for the most-part things have went as expected. Initially dreams had subsided however they have since returned. I am sleeping through the entire night and that is something that I was not able to do when I was on Atripla. On day 4 I started to experience severe fatigue. I actually haven't been that fatigued since I was first diagnosed and had a viral load of over a million. The best way to describe the fatigue is to say it feels like no matter how much rest I get I am still tired. To counter this I am just taking it really easy and trying to rest up.

Most of the symptoms come and go in waves so I just have to wait the symptoms out. There are times when concentration is extremely difficult and things are "cloudy". This is also coupled with moments where I simply do not feel well. Those moments come really quickly and disappear after a few minutes. Tonight I was laying on the bed and I started to feel tingling in my left arm, left side of my face, right lower back and right leg.

Around this same time I was also experiencing mild nausea. Again all of these symptoms come and go in waves. I have also had incidence of my headaches but I have simply taken Tylenol to treat the headache and they have went away.

I am not stressing over the side effects. I know that from taking Atripla that side effects generally subside as your body becomes adjusted to the medication. All in all the switch is going fairly smoothly and I am still glad that I chose to switch. I also got a letter in the mail today letting me know that my insurance would cover the cost of Stribild. I need to contact the specialty pharmacy tomorrow and arrange the shipment of my next months supply. I will be sure to blog about how that goes.

Aaron

Day 3: Stribild Rash

Day 3: Stribild Rash

Greetings! Well today marks the third day since I have switched from Atripla to Striblild. I can say that so far it has been uneventful. I have experienced almost no side effects that many others have experienced. I have however noticed that at times I have a headache that will come and go. I cannot say that this is exclusively because of the medication though. Tonight as I got out of the shower I noticed that I had developed a rash on my chest/abdomen that radiates across the width of my body to my flanks. I am not alarmed by this when I first start Atripla I developed a pretty bad Atripla-rash. I know that if they rash becomes bothersome that I can take Benadryl for it and I will keep an eye on it.

Regarding my sleep, I can tell a huge difference in my quality of sleep and I am no longer waking up in the middle of the night. The only other side effect that I might be experiencing is heart burn which means I need to eat more when I take the medication. I have not had any other problems though.

 <---- Here you can see the start of the rash. Eventually it will most likely spread over the entirety of my trunk.

When you look at them close up they it simply looks like hives
or areas of raised skin.                                               --------->

<----- Again it is across my trunk spreading L flank to R flank.

Changing From Atripla to Stribild

Changing From Atripla to Stribild

In June 6, 2011 I was diagnosed with HIV. I knew that I immediately wanted to go on medications and I was immediately enrolled into a drug study that was open label. I end up on the Atripla arm. Initially I tolerated the Atripla very well. Life was great. Within 5-6 months I was undetectable and life returned to "normal" whatever that is. 

I had been warned about the "Atripla dreams" and to be honest it never bothered me, initially. I found that the key to Atripla is low-fat diet. The sustiva component in Atripla interacts with fat which is what causes the dreams to be worse. For the first year life was great and I was extremely happy. If it wasn't for the activism and advocacy that I did, it would have been extremely easy to forget that I was living with HIV. I think that this says a lot about what life is like for a patient today. 

Before I knew it, my 52 weeks study was coming to an end and I faced the decision of what I wanted to do next. One one hand I could stick with Atripla which I was tolerating well or I could switch to Stribild. I had read articles weighing in on atripla and damage to neurons and this was particularity-worrisome. After many conversations with my doctor, I made the decision to enter into a second study but if side effects worsened I would break study and come off. I was hoping that I would be randomized into a different drug however I was placed into another Atripla arm which would last for 52 weeks. 

There were things that I had to consider when making the decision, namely financial. At that time I had insurance however I was waiting for the "pre-exisiting period" to end so HIV would be covered. I was aware that stribild costs around $2900 a month as well as quarterly lab work is about $1500. 

A few months after I started the second study I noticed that the systems were really becoming more pronounced. I tell everyone that for the entire time that I was on Atripla I dreamed and that gets extremely tiring. It is almost as if your brain never gets to shut off. For a majority of the time that I was on Atripla I have had to take sleep-aides such as Ambien in order to get any meaningful sleep. 

Every time that I would have a doctor's appointment, which when you first start a study is Day 0, 2 Weeks, 4 Weeks, 12 weeks out to 52 weeks. Each study is different though, but for this particular study that was how it worked. In October/November of 2013 I had a trip to Washington, DC for a leadership meeting with the AIDS Clinical Trials Group. While in DC I had a horrible dream where in the dream I progressed to end-stage AIDS which required me to go on hospice. 

The unique thing about Atripla dreams is that everything is real. You can recall taste, sound, smell and everything in between. When I returned back to St. Louis I spoke with my Doctor however I still wanted to continue. The good thing about Atripla is the penetration of the "Blood/Brain barrier". From my work with the ACTG I have come to understand that a person living with HIV can have different levels of HIV in their system i.e. spinal fluid, semen, blood, breast milk, vaginal fluid. It was becuase of this that my general practitioner who is also an infectious disease physician decided to continue on with Atripla. 

The last 2-3 months however that I was on Atripla the sleep interruptions became more than I could handle. Every night I would wake up around 3-330am. It did not matter what my diet was or that I was taking ambien. Also concerntration really became and issue that could not be ignored any longer. Over the last few months I have spoken with several physicians and advocates that all encouraged me to change my medications. I explained that I was concerned about developing a resistance if I change medications. I also have always heard that a person should stay on their current regimen until it fails. I was lucky when I tested positive in that I was sensitive to all medications and I did not have a variant strain of HIV. One of the doctors made the following statement to me that made me think. He said, "Aaron, if you are having side effects from Atripla, why not switch to stribild? You have options and you should not be miserable due to the medications." This really made me think as well as be thankful that I do have options. 

Two weeks ago I made an appointment with my doctor's office with whom I have been with for close to ten years and I anxiously awaited the appointment. January 7, 2014 at 1215 was my appointment. The day came and I went to see my doctor. While the nurse was screening me she asked what the reason of my visit was and I proudly proclaimed, "I need to reconsider my HIV regimen." When the doctor came in he already knew what I wanted to do since we had talked about it multiple times during the previous 6-8 months. We talked about what I could expect with Stribild, how long atripla would stay in my system (about a week) and then we talked about insurance issues. With that the appointment came to and end and I waited for the pharmacy to fill the order. 

I am fortunate that I have a Walgreens specialty pharmacy right in the doctor's office where I go (Southhampton Healthcare). The staff worked with the insurance company to get the prior authorization and then explained that I am going to now be using mail order. My pharmacist explained that I would need to take stribild with medication as well as the potential side-effects. 

That evening I decided that I was going to take the medication at 6pm since I have to take it with food. I do not always eat breakfast and lunch is never during a regularly-set time. The clock clicked closer to 6pm and I went into the kitchen and made half a sandwich and then I popped the big, green pill. The rest as the say is waiting. Ask I sat and read over side-effects an stuff, I started to get panicky. I mean, for the last 2 1/2 years I have been on a medication that I have taken every night right before bet. No matter what I was doing I did this same routine and now I was changing it. In some ways I felt like I was abandoning a friend that had been with me sine those early days. When I as first diagnosed my viral load was over a million and my CD4 was 678. Now though I was changing everything. 

For a split second I thought that this was a huge mistake. Was I feeling something? Was this new medication going to give me fatigue or make m e nausea? I guess after 2 1/2 years of perfect health, having mild nausea depending on things I had eaten, sleep interruptions and so on, I had gotten use to atripla. All medications have side effects but we sometimes fail to remember that because the medications have improved so much. 

I finished the night out while watching television and then went to bed. I woke up the next morning and the first thing that I did was look at the clock and I was thrilled to see that it read "550am". For the first time in almost 2 1/2 years I had slept through the night. While I did have dreams they were nothing like while I was on atripla. Those two things alone already tell me that I made the right choice in switching to stribild.

I just finished taking my second dose of stribild at 6pm and as of yet I have not had any side effects. I will be sure to keep you posted. I would definitely say that if you are having side-effects from your medications that you need to talk to your healthcare provider and changing medications if it is appropriate. There is no need for you to be miserable from side effects while there are many options out there for those of us that are living with HIV. 

Negative Gay Men Consider Viral Load Before Unprotected Sex

 

Negative Gay Men Consider Viral Load Before Unprotected Sex
July 17, 2013- POZ.COM

HIV-negative gay men are much less likely to engage in unprotected anal intercourse with an HIV-positive partner if they perceive him to have a detectable viral load, the National AIDS Treatment Advocacy Project reports. Australian researchers looked at risk behavior in an ongoing study of 76 serodiscordant couples (meaning that one was HIV positive and the other HIV negative) and presented their findings at the 7th International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention (IAS 2013) in Kuala Lumpur.

Fifty-six (74 percent) of the HIV-positive partners had an undetectable viral load at the beginning of the study, and the remainder had a detectable viral load. Meanwhile, sixty-one (80 percent) of the HIV-negative partners believed their partner had an undetectable viral load, while the remainder believed their partner had a detectable viral load or didn’t know their viral load. This left a difference of five HIV-negative men who were either mistaken or uninformed about their partner’s viral load.

Fifty-five (72 percent) of the HIV-negative partners reported unprotected anal intercourse (UAI) with their partner. Among them, 48 (63 percent of the study group) reported insertive UAI—or being the top—while 32 (45 percent) reported receptive UAI (bottoming) without ejaculation and 19 (25 percent) reported receptive UAI with ejaculation. In other words, the HIV-negative partners were more likely to be the top during condomless anal sex.

Of the 61 HIV-negative men who thought their partner had an undetectable viral load, 49 (80 percent) had UAI in the previous three months. Of the 15 HIV-negative men who thought their partner had a detectable viral load or did not know his viral load, six (40 percent) had UAI in the previous three months.

Believing that a partner had a detectable viral load lowered the likelihood of UAI by 84 percent.

US: Bill to lift ban on HIV positive organ donation passes House committee

by Joseph Patrick McCormick for PinkNews.co.uk
18 July 2013, 12:21am  

   

 

A bill which could eventually allow the donation of HIV positive organs to HIV positive recipients has passed the House after having passed the US Senate back in June.
The HIV Organ Policy Equity Act (HOPE), which is sponsored by both Democrats and Republicans would allow organs from HIV positive people to be donated to HIV positive recipients, and more so would allow researchers to study the safety of such practice.

The Human Rights Campaign also commended the passage of the bill. Back in March, the HRC praised the passage of the bill in the Senate Committe, and in June it passed in the full Senate.

“The HOPE Act represents sound public health policy,” said HRC legislative director Allison Herwitt. “The action by the House Energy & Commerce Committee is a major step forward in removing an outdated barrier which impedes access to lifesaving transplants for persons living with HIV and AIDS.”
The bill was sponsored by Representative Lois Capps.

HIV-positive patients in the US have been lobbying for the right to receive HIV-infected transplant organs for some time. They argue that there are hundreds of HIV-infected organs available every year and that making the change would save lives and give more people the chance of a transplant.
There are more than 100,000 actively waiting for life-saving organs, and around 50,000 more are added annually, and lifting the ban could decrease waiting time for all.

Allowing organs from HIV positive donors to HIV positive recipients with liver or kidney failure could save up to 1,000 people each year.
The ban on HIV positive organ donation was put in place in 1988, and aruments for it being lifted come partly from the fact that the treatment of HIV and AIDS has advanced significantly since.
The Centers for Disease Control issued draft Public Health Service Guidelines in September 2011, recommending research in this area, but said that in the US, federal law blocks it from taking place.
Over 40 medical and patient advocacy groups endorse the act, including the United Network for Organ Sharing, which manages the US’s organ transplant system.

Am I responsible for my friend’s HIV infection, addiction and death?

Am I responsible for my friend’s HIV infection, addiction and death?

By: Aaron M. Laxton- Writer, Blogger and Activist

Do we have an obligation to intervene when our friends are engaging in behaviors that are dangerous and potentially deadly? Some of my closest friends and peers are shooting, snorting, and sleeping their way to potential HIV infection and eventually death.  Am I responsible through inaction for their ultimate demise? We have all seen the commercials that teach us to stop a person who has been drinking from getting behind the wheel of a vehicle, however why do we not do the same thing for other dangerous actions?  If we expect to turn the tide of new infections as well as the death of our generation by way of addiction to drugs such as crystal meth and heroin, then it is time that we start to have REAL conversations with each other.

 

Recently Glee fans from around the world were saddened to hear of the sudden death of the Cory Monteith, who played the lead character of Finn. Monteith made his own personal struggle with addiction public last year when he entered drug rehab for the first time.  It now appears as if Monteith’s battle with addiction to methamphetamines was still ongoing. Monteith’s death follows on the heels of Spencer Cox, world renowned AIDS Activist, who also lost his battle with addiction and only further serves to highlight the need for action.

Crystal Meth

As I travel across the United States sharing my experiences as a person living with HIV since June 6, 2011 one thing stands out to me, people are still using crystal meth.  As a recovering addict, I can tell you that during the height of my addiction I would have loved for anyone to have told me how much I was hurting myself.  What started out simply as something I would do while partying with friends soon became a major addiction that wrecked every aspect of my life, ending with my being becoming infected with HIV. I could easily have been another Monteith or Cox. My life while using meth consisted of trolling hookup sites looking for my next trick, while looking for my next fix. There were never enough tricks and there was definitely never enough meth.  Psychologically, I had devolved to state of amphetamine-psychosis, a consequence of chronic amphetamine use. Symptoms mimic those of schizophrenia and include hallucinations, hearing voices, paranoia, mental confusion, loss of time, emotional flatness, not eating, inability to sleep just to name a few.  

 Logging on to any hook-up application or websites I’m  continually amazed to see the headlines for “Party N Play”, “PNP” all code for fellow-tweakers  (a term used to describe a person who uses meth).  Bathhouses are filled with guys who are doped up on chemicals purchased from warehouse store; the actions they engage in while under the influence creates a breeding ground, no pun intended, for new HIV infection. You might ask, “How does this guy know about what goes on in my bathhouse?” My response is that I am most likely a card-carrying member of your bathhouse. I have no shame is disclosing the fact that I frequent bathhouses around the world. Regardless of what your social standing we are all equalized when we are wandering the halls of the bathhouse in a towel simply looking for our next trick. It is time for us to have the tough conversations with our friends who are dealing with addiction. 

The reality is that the bathhouses are filled with your friends who slip in after a night of partying.  You may never know about it because they believe that you would judge them. It is time to admit that you likely have at least one friend or acquaintance who is an addict, but they believe they have it under control. All addicts think that they have it under control but the truth is that addiction is in control.

Raw, Bareback Sex

We need to face it that there are two messages being told. The most prevalent and politically-correct message is that condoms need to be used each and every time that you have sex. The reality is thatthat not everyone wants to use condoms and consequently we are not wearing them, more personally… I will not wear them. The reason that no one freely admits that we are not using condoms is because we do not want to be preached at and shamed. While condoms offer protection against exposure to HIV they are just one of many tools that we have currently. If we are truly committed to reducing shame and having a conversation about reducing new HIV infections we must end the stigma surrounding unprotected sex. I will always choose to have no sex at all than to have sex with a condom.

It is time for us to have these tough conversations with each other regarding risk-reduction practices and prevention outside of simply putting a condom on. It is time to wake up and recognize that beating people over the head with the “condom” message isn’t cutting it. A better conversation to have with friends who refuse to use condoms might be whether they have heard of PrEP (Pre-exposure Prophylaxis) or what other risk-reduction practices they use.

People are going to make their own choices regardless of how you feel about it. If we are committed to changing the tide of new HIV-infections & addiction then it is time for us to start having real conversations free of judgment and stigma.  Are you responsible for your friend’s HIV infection? That is only something that you can answer. Ultimately each person is responsible for their own actions. As friends and family don’t we have a higher responsible to intervene when a person is engaging in behavior that presents a high probability of negative results such as HIV-infection and in some cases death? Without these tough conversations, how many more of our friends fall victim to addiction and risky behavior?

Meningitis Outbreak – Should You Protect Yourself Prior to Major Events?

 Meningitis Outbreak – Should You Protect Yourself Prior to Major Events?

By now, most of you have seen the news stories regarding meningitis outbreaks that were initially isolated to New York but have now moved to Los Angeles. If we have learned nothing else from the early days of the AIDS plague, it should be that early response trumps a reactive-scramble to matters of public-health. It is not my intent to sound the alarm over meningitis however, it is something that needs to be watched quite carefully. With several major leather events, CLAW & IML on the horizon, attendees need to be fully informed regarding what it is and how they can protect themselves.

Meningitis is inflammation of the protective membranes covering the brain and spinal cord and the most common symptoms are headache, fever, neck stiffness, confusion, vomiting and an inability to tolerate light or loud noises. Meningitis is contracted through “close contact” not simple casual contact, examples of this would be: kissing, coughing, sneezing, sharing eating utensils, glasses, food or towels. Although meningitis is not transmitted exclusively through sexual intercourse, most of the above stated activities occur during sexual contact. It is for this reason that I urge anyone attending major leather events or parties such as CLAW or IML to consider getting vaccinated. There is considerable evidence which supports the idea that the LA patient was exposed during a White Party over Easter Weekend.

The New York City Health Department has suggested that gay men in New York “who regularly have intimate contact with other men through a website, digital application, or at a bar or party” might consider getting vaccinated. This simply means that this group is at higher risk for exposure to meningitis due to the activities that they are engaged in regularly.

Getting vaccinated as a precaution poses no risk to your health. It will take approximately 2 weeks from the initial date of vaccination for the full-benefits of the vaccination to be seen. Additionally individuals who are HIV positive may require a secondary booster to be fully protected. The meningitis vaccine will prevent invasive meningococcal disease from taking root but does not treat the disease if a person is already infected.

Should you get vaccinated against a deadly meningitis outbreak?

Update April 13, 2013: Concern is growing in Los Angeles after a gay 33  y.o. West Hollywood man contracted meningitis this week and quickly went in to a coma.  He felt ill on Monday, went to the emergency room on Wednesday, and by Thursday was in a coma.  He is now brain dead.  He reportedly recently attended the White Party in Palm Springs, though it’s not known if he contracted the disease there.

A 21 y.o. University of Wisconsin-Madison senior has also died of meningitis.  The article do not indicate if he was gay.

It is unknown if either of these cases are related to the outbreak in NYC.  For the details of this latest outbreak, how you contract meningitis, and whether you need to get vaccinated, read on.  Also, I got my vaccinated in early April, cost $165 at my doctor (doesn’t look like insurance will cover it), but a friend was able to get it for half that price on his college campus, so your mileage may vary (check local public health clinics etc.).  I had zero reaction to the vaccine – it’s a dead vaccine, not even a full virus, so no risk beyond any other vaccine.

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April 2, 2013 – I had a great talk yesterday with Dr. Thomas Clark, an epidemiologist and meningitis expert at the US Centers for Disease Control and Prevention (CDC). Our topic: the recent deadly meningitis outbreak among gay men in New York City.

As you may recall, we’ve been reporting on increasingly scary warnings out of New York that a particularly deadly variant of meningococcal disease (bacterial meningitis) was showing up in gay men in New York. The New York authorities are now recommending vaccinations for gay men in New York City who are either HIV-positive, or HIV-negative and non-monogamous. The vaccination warning also includes men in the two categories above who visited New York City at any time since September of 2012.

As I noted in my earlier post on this topic, the warnings from both New York City and New York State on this matter have been somewhat confusing, so I sought out an expert at the CDC, Dr. Clark, to explain what’s actually going on, and who really needs to get a shot.

Let me walk you through what I learned.

Who should get a meningitis shot?

Vaccine via Shutterstock

Anyone covered by the recommendations from NYC and NY state, if you can make sense of them.  But also, really, anyone who’s concerned enough about the outbreak.  I asked Dr. Clark if there was any downside to the vaccine, and he said no.  The vaccine carries no more risk than any other vaccine you might take.  And to further put one’s mind at ease, the meningitis vaccine does not contain a live bacteria, or even a dead one – it only contains part of the shell of the bacteria, so it’s impossible for it to give you meningitis.  Thus, Dr. Clarks’s recommendation, that if you’re worried at all, get the shot.

How is this variant of meningitis transmitted?

I was quite surprised about how the bacteria is transmitted.  As the NY warnings are targeted at gay men, and specifically at men who seek sex partners online, at a party, or at a bar, I just assumed that this was sexually transmitted.  It’s not.

The bacteria is transmitted through secretions of the mouth, nose and throat – large-sized droplets. What that means is the droplets are far too large to float in the air.  So it’s the kind of thing you’re more likely to get from French kissing, or having someone cough in your face or accidentally spit in your face while talking, or even sneezing – but regular aerosolized drops in sneezes won’t get you sicks, it’s the larger droplets that do it.  That’s why the warnings talked about “close contact.”  What they found was that people living together, even if they’re not in a romantic relationship, we’re at a “very high risk” of contracting the disease from each other.

Can meningitis be transmitted by sex? No, but…

Not only are the mouth, nose and throat instrumental for transmitting the bacteria, they’re also instrumental for receiving the bacteria.  So oral sex isn’t going to transmit it, so long as your mouth doesn’t come into contact with anyone else’s saliva – same goes for any other sex act, the key issue is your mouth (or nose) coming into contact with someone else’s saliva.  I was surprised about that, since I figured this would be transmitted similarly to an STD.  Not so, said Dr. Clark.  Even though the bacteria is a cousin of the bacteria that causes gonorrhea, while gonorrhea adapted to the genital tract as a venue of transmission, this bacteria adopted to the nose and throat.  It is also not, however, as easily spread as an STD.

You’re not at risk if you work with someone who gets sick

Because the bacteria requires prolonged face-to-face contact, simply working in an office alongside someone who came down with meningitis would not put you at risk, Dr. Clark told me.

Are people with HIV more likely to contract meningitis?

This one is tricky.  What they’ve found is that being HIV-positive does not per se put you at risk of catching this variant of meningitis, as being HIV-positive can for other infections.  So it’s not really a question of having a depressed immune system and thus being more likely to get the disease.  But, they’ve found some kind of correlation between being HIV-positive and becoming infected during this outbreak: Many of those infected are HIV-positive, but not all.

It could be something as simple as HIV-positive people in New York generally having sex with other HIV-positive people in that same community.  Thus, if someone becomes infected in that community, he is more likely to pass it to other members of that community.  So the bacteria stays within the HIV-positive community because it’s a discrete community, not because HIV makes you more prone to catch it.   That isn’t necessarily the reason HIV-positive people in NYC are coming down with this disease, but it is an example of how HIV doesn’t put you at risk of catching the disease, yet your HIV status could still be relevant to whether you’re at a heightened risk.

Will the meningitis vaccine help after you’re exposed? No.

If your doctor thinks you’ve been exposed, or you’re already showing symptoms, they will prescribe antibiotics.  The vaccine is only good before you’re exposed.

How quickly does the vaccine work, how long does it last?

The meningitis vaccine takes two weeks to fully kick in, and should protect you for three to five years.  People with HIV may not respond as well to the vaccine, so it’s recommended that they receive two doses – a booster shot, in essence – two to three months apart.  And regardless of your status, if you remain at risk, they recommend a booster after five years.

Can you be exposed and not get sick?  Yes.

Some people are exposed to meningitis and don’t get sick at all.  Others are exposed and develop an immune response to the bacteria without becoming visibly ill, and without even knowing it.  You will not, however, be a “carrier” of the disease if that happens to you.  You would only be contagious during the same time period that anyone else with the disease would be contagious. (Though I didn’t clarify with Dr. Clark how long that would be in the case of someone who didn’t show any symptoms – nonetheless, it didn’t see like a long time, as he said you wouldn’t be a carrier, and you wouldn’t be contagious once you’re body developed the immunity.)

For how long are people contagious?

The good thing and bad thing about this disease is that you generally get sick a day or two after you were exposed, though it’s possible, but unlikely, for it to take up to two weeks.  The bad news is that you can become quite ill quickly, and if you don’t get medical help you can die.  The good news is that the quick onset of the disease makes it harder to spread.  Why?  Because once you’re in bed sick as a dog, you really don’t feel like going online and hooking up, or going to a bar and drinking with your buddies.  So the disease generally only gets a chance to spread in that 24 to 48 hour window after you’re first exposed and still feeling fine, which thus limits the spread of the disease.

Is this a gay disease? No.

I mentioned to Dr. Clark that some of the readers were confused as to why the warning went out to the gay community and not the straight community as well.  How could a disease target only gay people?

He said that it’s not a “gay” disease, and that meningitis usually targets schools, college campuses, and corrections facilities – i.e., a small enclosed community.  Occasionally, the disease can hit a “virtual community,” like the gay community. By “virtual,” he means that gay men are not a geographically-confined community as are kids in the same high school building or college dorm, or men living in the same prison.   So the community is more “virtual,” as the tie isn’t immediate geographic proximity per se (though obviously it’s affecting people within a discrete geography like New York City, but that’s different than actually living together in the same building and thus you all get sick).

Also, 98% of the cases in the US every year are sporadic, they occur by themselves, rather than striking a community.  Only a small fraction turn into “outbreaks” like this one.

One more thing Dr. Clark noted was that this disease tends to strike in specific clusters, in specific communities, and it tends to stay confined to that community, without spreading to other communities.  And that’s another reason why the warnings are only being given to gay men, and only, so far, in NYC.

Just how big is this outbreak?  Not big at all, actually, but big enough to be concerned.

There was one case in 2010, four in 2011, and thirteen in 2012.  Those numbers may look small, but in public health terms, they’re not.  What has experts worried is that they keep hitting the same community, gay men in New York City, and it’s not going away.  Most outbreaks happen quickly, Dr. Clark told me, with usually just a few cases occurring at once in a short period of time, and then they go away.  This has been going on in NYC since 2010 and it’s growing, rather than going away.  Thus the concern.

I just talked to Dr. Clark about some of the comments here, and on Facebook, saying that with these low of numbers, this was blown out of proportion by the authorities in NY.  He says that’s not true at all.  Here’s why….

In public health terms, an “outbreak” is defined as 10 cases per 100,000 people within a short period of time (say, a few weeks).  When you have an “outbreak,” that’s suggestive that the disease has reached a point where it may accelerate and spread to even more people.  In public health circles, it’s their job to stop outbreaks from becoming something bigger.  To the public, these numbers sound small.  But in public health terms, these numbers are statistically significant and worthy of increased concern.

That’s why when they get 2 or 3 cases in a school of 600 kids, or a prison of a few thousand inmates, they vaccinate everyone to prevent the disease’s spread.  That’s enough cases to set off alarm bells.

In NYC, we’re talking more on the order 13 or so cases last year.  But, you might say, hey, that’s 13 cases for 8 million people, so who cares?  But that’s not really correct.  It’s not 8 million New Yorkers.  It’s gay New Yorkers.  And it’s only gay men who are getting sick, not lesbians, so now the number is cut down even fewer. And it’s not all gay men in NYC, it’s gay men in certain boroughs.  And it’s not every gay men in those boroughs, it seems to be gay men in those boroughs who are sexually active and particularly using Web sites, phone apps, bars and partys to meet guys.  That cuts down the number even further.  So you’re now a lot closer to that 100,000 figure than you were when you thought this was about 8 million New Yorkers.

The uncertainty of the size of the community exposed to this disease is part of what worries public health professionals.  It’s not possible to accurately define whether we’re talking 13 cases per 100,000, per 200,000 or per 50,000.  So they err on the side of caution because this is such a particularly deadly variant of the disease, killing 1 in 3 who get it, rather than the normal 1 in 5.   And in public health, you try to cut off disease before they become a huge problem.  Thus you have to look at small numbers, and historically what those numbers tend to mean for the future, and act accordingly.

That’s pretty much it.  I know my concerns were allayed greatly in talking to Dr. Clark.

I got my vaccination last week.  It was $165 or so at my doctor’s, a friend got his on a college campus for around $85.  At least this disease sounds like it should have a much harder time spreading than some others in our history.

West Coast City Issues Strong Warning Regarding Meningococcal Infection

City Issues Strong Warning Regarding Meningococcal Infection

Posted Date:4/12/2013

The City of West Hollywood issued a strong warning at a news conference held Friday, April 12th regarding meningococcal infection, a bacteria-caused illness that can lead to potentially deadly meningitis.

“We don't want to panic people,” said West Hollywood Councilmember John Duran. “But we learned 30 years ago the consequences of delay in the response to AIDS. We are sounding the alarm that sexually active gay men need to be aware that we have a strain of meningitis that is deadly on our hands,” continued Duran.

According to the Centers for Disease Control and Prevention, bacterial meningitis is usually severe. While most people with meningitis recover, it can cause serious complications, such as brain damage, hearing loss, or learning disabilities.

Infectious diseases such as meningococcal infection tend to spread more quickly where larger groups of people gather together. College students living in dormitories and military personnel are at increased risk for meningococcal meningitis as well as people with weakened immune systems such as those living with HIV/AIDS.

The germs that cause bacterial meningitis can be contagious. Some bacteria can spread through the exchange of respiratory and throat secretions (e.g., kissing). Fortunately, most of the bacteria that cause meningitis are not as contagious as diseases like the common cold or the flu. Also, the bacteria are not spread by casual contact or by simply breathing the air where a person with meningitis has been.

Meningitis infection may show up in a person by a sudden onset of fever, headache, and stiff neck. It will often have other symptoms which include:

• Nausea 
• Vomiting 
• Increased sensitivity to light (photophobia) 
• Altered mental status (confusion)

The symptoms of bacterial meningitis can appear quickly or over several days. Typically they develop within three to seven days after exposure.

The Centers for Disease Control and Prevention has been alerted about a Los Angeles County case of meningococcal infection. Tests are being conducted to determine the imprint of this strain, which is not a new one. There may be similarities to an especially deadly strain of meningococcal infection found recently in New York that has resulted in twenty-two cases, including seven fatalities since 2010. The outbreak in New York City involved a strain circulating among men who have sex with men and may be transmitted during intimate encounters including sex.
For more information visit the Centers for Disease Control and Prevention website.

• Questions and Answers about Bacterial Meningitis [PDF]
  Provided by the County of Los Angeles Department of Health Services Public Health