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!!!

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. 

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.

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

No Place to call home: Aging with HIV/AIDS

No Place to call home: Aging with HIV/AIDS

By: Aaron M. Laxton, Blogger, Activist and HIV-Infected Queer

 

 

I remember once in a class that I was in the professor had the class address issues regarding their own mortality. For  people in their youth this can be extremely hard since this can viewed as morbid. After all, we will live forever and nothing will ever hurt us...right? Obviously as we age we begin to understand that this is not the case; life is always moving and changing. Eventually life will move on and change without us.

　

HIV risk doesn’t stop at 50. In fact, men and women over age 50 account for 17 percent of all new HIV and AIDS diagnoses in the 40 states that have long-term confidential name-based reporting.

During the plague years hospices began to form that would address the needs of those dying from AIDS. It was in these hospices where patients were not viewed as an infectious disease but rather a person who needed love and compassion. A patient covered in Karposi Sarcoma or sufferingly was severe wasting was not feared but rather embraced, held and loved. Although the end of their life was marked by the extreme pain and suffering of AIDS related complications and social stigma, the hospice provided a safe-haven in their final days.

With the advent of improved medications and our understanding of our to treat HIV the amount of people dying from AIDS slowed; as a result the hospices that we once formed to provide support for them were not needed. It is estimated that approximately 50,000 annually die from AIDS in the United States. Some of these organizations restructured to provide other services and others simple were no longer there.

In 2009, people aged 50 and older accounted for 23% of AIDS diagnoses in the United States. Yet older adults are often overlooked in the ongoing HIV/AIDS conversation. Developed for the National Aging Network and others interested in educating older adults, the U.S. Administration on Aging HIV: Know the Risks. Get the Facts. Older Adults and HIV/AIDS Toolkit contains helpful resources and materials specifically designed to inform older adults about the risks of HIV/AIDS and to encourage older adults to know their status.

Now however we have an aging population of patients living with HIV/AIDS and we must consider how to provide the best possible care for them. Anyone who works with aging populations will tell you that finding residential care facilities is a daunting task. I work as a case manager and recently had to do this for a client. This particular client did not have HIV however the task was a challenge none-the-less.

As an HIV positive patient population reaches a time where they might need a residential care facility where will they go? You might say that they can go to any residential care facility that they want. In theory you are right however the facility has the right to refuse whomever they want. Typically once an administrator determines that a patient is HIV positive they are less apt to admit that patient into their facility. This is not something that cannot be hidden since all medical records must be given to the prospective facility.

Also there is the issue of stigma within the residential care facilities. For many of these facilities is it a challenge simply being LGBT. The fear and ignorance of HIV among others residents and staff alike would make it almost impossible for a person living with HIV to live with any quality of life.

One strategy might be to develop facilities that specialize for those living with HIV but does this further perpetuate stigma and ignorance. By creating specialized facilities are we simply shuffling those living with HIV/AIDS "Out of Sight, Out of Mind". That is a slippery slope. What would be next, homes for only white people? Homes for only black people?

If we agree that specialized facilities are not the best strategy then another might be to work with policy and regulators to ensure access to services and facilities by those HIV positive patients. Creating a demand for improve transparency regarding decisions for admissions into programs? Also working with residential care facilities to help educate staff and residents about HIV/AIDS.

We have an ethical obligation to provide great care for our elders not to simply shuffle them away somewhere until they die.

Aaron M. Laxton
My HIV Journey
aaronlaxton@gmail.com

Kansas seeks to imprison HIV-infected People

Today while on Facebook, a message popped up regarding a proposal that was being made in Topeka, Kansas that sought to quarantine those infected with HIV/AIDS. While this is completely absurd, we currently have criminal statutes in 34 states that are dong this very thing.

HIV Criminal Statutes State by State Breakdown

Patients who are living with HIV are treated as second-rate citizens who seemingly have no protectin under the law. That is a fact! While everyone can see the injustice of a message calling for quarantine, there seems to be little or no outrage over current criminal statutes which are putting patients in prison. Additionally a person that is prosecuted and sentenced in one state may get a life-sentence while in another state it substantially different.

Kansas Seeks to quarantine those infect with HIV.

There is no data to support that criminalization helps to reduce rates of infection. In fact these criminalization statutes only serve to further stigmatize those who are living with HIV/AIDS and to stop people from getting tested and starting treatment. Below are comments highlighted by Sean Strub who heads up the cause of modernizing HIV criminal statues with The SeroProject.

HIV Criminalization is Bad Public Health Policy
HIV criminalization statutes are terrible public health policy because they discourage persons at risk from getting tested. Those with HIV who are aware of their HIV positive status are more responsible in their sexual behaviors than those who are unaware they have HIV ; testing is a basic tool of HIV prevention as well as an essential gateway to care.

Criminalization statutes also make it more difficult for persons with HIV to disclose their HIV status. Those who know they have HIV already suffer significant discrimination and stigma. Disclosing one's HIV status can be emotionally difficult, risking rejection from family and friends, sometimes with great insult or abuse, and often jeopardizes one's employment, housing, relationships or personal safety. Criminalization of HIV legitimizes the ignorance, homophobia, racism and sexophobia that fuels inflated fears of HIV and those who have HIV.

Criminalization undermines efforts to prevent new HIV infections and provide access to care in multiple ways: Ignorance of one's HIV status is the best defense against a "failure to disclose" prosecution, which creates a powerful disincentive to getting tested and learning one's HIV status.

Young African American men who have sex with men are among those at highest risk of acquiring HIV, yet also among the most difficult to get tested. The prospect of prosecution for failing to disclose--especially since these prosecutions often boil down to a "he said, he said" or "he said, she said" situation--is a powerful and likely growing disincentive to taking an HIV test.

Most new infections are caused by sexual contact with persons who have not been tested and are unaware that they have HIV, yet only those who have taken responsibility and gotten tested are subject to prosecution.

Prosecuting the failure to disclose one's HIV status undercuts the most basic HIV and STD prevention message: that every person must take responsibility for his or her own sexual health.

Prosecuting the failure to disclose values the "right" to an illusion of safety, for those who are HIV negative or who do not know their HIV status, over the privacy rights of those who have HIV.

A legal obligation to disclose one's viral status prior to intimate contact creates a particular inequity for those who were born with HIV. If we are all born equal, why is it that this group must carry throughout their lives a legal obligation to disclose their viral status prior to engaging in intimate contact?

Examples of Prosecutions
The most publicized HIV criminalization cases are often driven by politically ambitious prosecutors and inflammatory or hysterical media coverage. These prosecutions feed into the public's ignorance and anxiety about HIV, reinforce negative stereotypes about people with HIV, and send conflicting messages about the real risks of HIV transmission in a given circumstance.

They depict people with HIV as dangerous potential infectors who must be controlled and regulated, making it more difficult to create a safe environment for people at risk to get tested and people with HIV to disclose their status.

The Iowa case provides a sobering illustration of the problem. The person with HIV who was charged with failing to disclose his status to a sexual partner was a 34-year old gay man who had been a volunteer with a local AIDS organization. He met a male partner online and went to his house. The person with HIV was on anti-retroviral therapy, had an undetectable viral load and used a condom when anally penetrating his partner. He posed little or no risk of transmitting the virus to his partner.

When the partner later heard that the man he had been intimate with had HIV, he went to the county prosecutor and pressed charges. The person with HIV was convicted under Iowa's extreme statute and sentenced to 25 years in prison. Fortunately, advocates were successful in getting the sentencing reviewed and after serving eleven months, he was released on five years' probation.

However, he still must register as a sex offender for the rest of his life, is subject to wearing an ankle monitoring bracelet and cannot leave his home county without permission from the court. He may not be around children (including his nieces and nephews) without adult supervision. He must, for the rest of his life, take lie detector tests every six months that ask intimate questions, including whether he wears women's clothing and if he is attracted to children or animals. He is prohibited from viewing any kind of pornography or even visiting social networking sites, like Facebook.

Iowa's statute is particularly broad--in theory, it could cause a person with HIV who kissed another person without disclosing their HIV positive status to be sentenced to as much as 25 years in prison--but other state's statutes and sentencing are equally as absurd.

Texas convicted Willie Campbell, an HIV positive man, for "assault with a deadly weapon" and sentenced him to 35 years in prison after he spat on a police officer who was arresting him for public intoxication.

Gregory Smith was within a year of his release from a New Jersey prison (after serving time for burglary) when he was charged with attempted murder, assault and terroristic threats following an incident in which he allegedly bit and spat on a guard at the county jail where he was held (Smith denied the charges). An additional 25 years was added to his sentence; he subsequently died of AIDS while incarcerated.

In late 2009, Michigan charged Daniel Allen, who has HIV and was involved in an altercation with a neighbor, under laws designed to combat terrorism, including "possession of a harmful biological agent". Prosecutors equated his HIV infection with "possession or use of a harmful device."

A man in Ohio is serving 40 years for failing to disclose to a girlfriend that he was HIV positive. He claims she knew he was positive and only went to a prosecutor after he stopped dating her and moved in with another woman.

An interesting note about the cases described above: none of them resulted in anyone actually acquiring HIV.

 

 

Out of Context: "cure" of infant could lead to misuse of ARV's.

Out of Context: "cure" of infant could lead to misuse of ARV's. 

By: Aaron M. Laxton, HIV-Infected Queer, Activist & Blogger

Almost immediately upon news that a child had "cleared" the virus that causes AIDS, news stories captured everyone's attention. It is captivating due to the fact that people want so badly to have a cure and the media sensationalizes anything that can get ratings and viewership. I am not saying that the media is bad however there was one thing that stood out to me when I first read the story. A 2 1/2 year old girl that was treated within 30 hours of birth and subsequently was able to clear the virus within her immune system. How long will it be before patients get the idea that they will be able to increase their antivirals and somehow get "cured". While this may sound like a crazy thought, it can also be a deadly thought since the medications that we take are highly toxic when taken in large amounts. 

My fear is that it will only be a matter of time before we see patients that deviate from the prescribed dosages of their medications and subsequently cause catastrophic damage to their renal system as well as liver damage. I hope that my fear is unfounded and that people will not take the information provided out of context. 

The greater message that needs to be relayed to the community is that 1 in 5 people who are infected with HIV are unaware of it. HIV is well managed with early detection through testing and treatment. Additionally there is no reason why in 2013 a person is not getting tested and treated for HIV or that people progress to AIDS. In the United States there are still approximately 50,000 AIDS related deaths each year and approximately 50,000 new HIV infections. 

If you are a patient that has read the stories regarding the toddler from Mississippi and you are even considering changing your medications arbitrarily please don't. While the child was given large doses of ARV's it was done under medical supervision and this is not appropriate for all patients. The child was able to clear the HIV virus due to her immune system lacking memory T Cells that develop in a mature immune system. The report will undoubtedly impact how we treat pediatrics which will greatly reduce the 330,000 mother-to-child transmissions that occur around the world annually. 

Patients need to continue their medications as prescribed with complete compliance and adherence. I will continue to preach the gospel of "test and treat". To find a testing center near you text your zip code to "knowit" and the closest testing site will be texted to your phone. 

What does a child "cured" of HIV mean for you?

What does a child "cured" of HIV mean for you?
By: Aaron M. Laxton, HIV-Infected Queer, Activist & Blogger

Today, 3/3/13, news came that a 2 1/2 year-old child has been considered "cured" of the HIV virus. As soon as the story hit the wire it began to bounce around via social media and other media outlets around the world. So what exactly does this mean for the those of us living with HIV? While this is great news that supports researchers ideas regarding HIV reservoirs it does not mean that the treatment for an adult currently living with HIV will change. 

The announcement regarding the child's clearance of HIV is important since it goes to the direct issue of a child's immune system versus the adult immune system. Additionally the child was treated with abnormally large amounts of ARV drugs and treatment began immediately, within 30 hours of birth; that indicates that she was most likely infected in utero. Most patients will not meet these same conditions however this supports the philosophy that early detection supports improved outcomes. 

The doctor treating the child gave higher-than-usual "therapeutic" doses of three powerful HIV drugs rather than the "prophylactic" doses usually given. In the months following treatment the child showed no signs of the virus. Due to the mother's living situation the child fell out of care and treatment was stopped. Once Mississippi state health authorities tracked the mother/child down they discovered that she had stopped giving the girl antiviral drugs six or seven month earlier. 

Doctors expected to find that the daughters immune system was showing signs of HIV infection however to their surprise they could detect no sign of the virus. Almost immediately the treating physician took steps to rule out specimen contamination and other considerations that could account for a negative test from the daughter. Since August of 2012 labs in San Diego, Baltimore and Bethesdahave ran ultra-sensation tests on the baby's blood. While intermittently pieces of HIV DNA and RNA have been found there is no indication that the virus is actively replicating in the child's cells.

The importance of this discovery is that it goes directly to theories that researchers have regarding HIV reservoirs. Since the child was treated approximately 30 hours after birth this effectively stopped HIV reservoirs from developing. 

While this research is a move in the right direction towards a cure there is a need for guarded optimism as well as context. For those of us living with HIV this news does not mean that we can stop medications or that we will be cured tomorrow. It does however mean that our understanding of HIV is improving. 

Injunction to block Congress from getting paid during Sequestration

Injunction to block Congress from getting paid during Sequestration
By: Aaron M. Laxton, HIV-Infected Queer, Activist & Blogger

In 6 days across-the-board cuts will go into effect as a result of President Obama and Congress failing to reach a deal regarding the debt ceiling. With the fiscal crisis looming on the horizon Congress is on vacation. It must be nice to get an approximate $175,000 annual salary for what amounts to a part time job. 

The sequester was originally passed as part of the Budget Control Act of 2011 (BCA), also known as the debt ceiling compromise. It was intended to serve as incentive for the Joint Select Committee on Deficit Reduction, or the "Supercommittee" to come to a deal to cut $1.5 trillion over 10 years. If the committee had done so, and Congress had passed it by Dec. 23, 2011, then the sequester would have been averted. A deal was not reached and we are now staring sequestration directly in the face. 

What is going to be cut?

• Domestic $42.7 billion (7.9 percent)
• Defense Programs $28.7 billion (5.3 percent)
• Mandatory $4 billion (5.8 percent non defense/7.8 defense)
• Discretionary Spending 
• Medicare $9.9 billion (2 percent)

The effect of sequestration will reduce the scale and scope of existing programs. Below is a list of programs that will be impacted:

• Aircraft purchases by the Air Force and Navy will be cut by $3.5 billion
• Military operations across the services will be cut about $13.5 billion
• Military research will be cut by $6.3 billion
• The National Institute of Health will be cut by $1.6 billion
• The Centers for Disease Control and Prevention will be reduced by $323 million
• Border security reduced by about $581 million
• Immigration enforcement to be cut by $323 million
• Airport security reduced by $323 million
• Head Startcut by $406 million- kicking 70,000 kids out of program
• FEMA cut by $375 million
• Public housing support slashed by $1.94 billion 
• FDA to be automatically reduced by $206 million
• NASA cut by $970 million
• Special education will be gutted by $840 million
• Energy Dept. program to secure our nukes cut by $650 million
• National Science Foundation cut by $388 million
• FBI reduced by $480 million
• Federal Prison system to be cut by $355 million
• State Dept. diplomatic functions will be cut by $650 million
• Global health programs to be cut by $433 million
• Nuclear Regulatory Commission cut by $55 million

During the sequester military service members will also see their benefits reduced however they will still get paid. Additionally federal employees will not see their salaries cut since Congress wrote a clause in that states, "a sequester may not reduce or have the effect of reducing the rate of pay an employee is entitled to." 

That means that Congress will continue to get paid although no work has been done or is currently being done. It is my belief that an injunction needs to be issued through Federal Court blocking Congress from getting paid during the sequester. Why should the citizens of the United States burden the consequences of Congress inability to reach a deal to avert the debt crisis?  

I urge each of you in the very strongest way to contact your representative in Congress and place pressure on them to actually do their job and reach a deal to avoid sequestration. It is my opinion that the entire administration and congress should not adjourn until a deal is reached.

 

Use the links below to determine who your member of congress is and how to contact them today.

 

Contacting Congress

Congressional Directory

 

Tips On Telephoning Your Elected Representatives

To find your senators' and representative's phone numbers, you may use our searchable online congressional directory or call the U.S. Capitol Switchboard at (202)224-3121 and ask for your senators' and/or representative's office.

Remember that telephone calls are usually taken by a staff member, not the member of Congress. Ask to speak with the aide who handles the issue about which you wish to comment.
After identifying yourself, tell the aide you would like to leave a brief message, such as: "Please tell Senator/Representative (Name) that I support/oppose (S.___/H.R.___)."
You will also want to state reasons for your support or opposition to the bill. Ask for your senators' or representative's position on the bill. You may also request a written response to your telephone call.