Holiday Message from My HIV Journey

My HIV Journey: Death and Addiction

ICW issues call to action after recent murder of HIV positive woman.

FOR IMMEDIATE RELEASE

 

ICW calls for education of the public on HIV transmission routes and hindrance of violence against HIV positive women as a result of a monstrous murder in Texas, USA

 

ICW North America

June 24^th, 2014

Washington, DC

 

The International Community of Women living with HIV (ICW) and the North America (ICWNA)chapterare shocked to learn the news of the murder of Elisha Henson, an HIV positive woman from Texas, USA this past May.  Her murder was as a result of the ignorance of the murderers of the ways that HIV is transmitted and the overall social stigma towards HIV positive women.

According to several media outlets, Justin Welch and Rosalind Welch Smith, have been charged with Henson’s murder. Authorities believe that the alleged perpetrator, Justin Welch, killed Ms. Henson after learning her status following a virtually zero-risk transmission encounter: receiving oral sex, female to male.

ICW thereby call for massive action towards educating people of the possibilities of HIV transmission. This atrocious event teaches us that the lack of adequate information puts vulnerable people, especially HIV positive women, to extremely dangerous situations followed by stigma-fuelled reactions by the public.

“Enough is enough!” said Jessica Whitbread, ICW Interim Global Director, “The team at ICW, are absolutely appalled at the fact that there is not more outcry for such a horrific event. Our heart goes out to Elisha and her loved ones.”

Fear of the unknown, mainstream stigma and inaccurate facts can lead to an ignition of anger leading to violence in those where the potential already exists. As a community we should ensure that violence against women, violence based on a woman’s status, and violence based on ignorance of the facts and lack of mainstream education comes to an end.

“Accurate and easy to understand facts about HIV transmission needs to be infused into the minds of the general public via far-reaching media outlets and not just contained within the HIV community” added Karen Marcinczyk, ICWNA Coordinator.

We must end the criminalisation against positive women including disclosure laws which only encourage stigma and validate the idea that being HIV positive is a crime that must be prosecuted. We must stop criminalization to guarantee that other HIV positive women in the world do not suffer the same fate.

ICW asks that all communities, including the HIV community, the media and law enforcement begin to work together to eliminate violence against positive women, seek justice and provide responsible, accurate and stigma-free communication to the public which puts their trust in them.

For more information contact:

Karen Marcinczyk, ICW North America Coordinator
icwnacontact@gmail.com

Arinola Elizabeth Nite, ICW Communications Associate
icwglobalcommunications@gmail.com

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My HIV Journey Day 1068: Update on Life

Insurer Says “Ryan White No Good”

The New Battle of New Orleans: Insurer Says “Ryan White No Good”

By Aaron M. Laxton

There is a new battle raging in the deep-south that without doubt could have implications for everyone living

with HIV/AIDS across the United States. Louisiana has found itself in a battle between those living with HIV/AIDS and insurance providers, namely Blue Cross/Blue Shield (BCBS) Louisiana.

The Affordable Care Act, which was enacted earlier this year, has served to leave patients living with HIV/AIDS in the cold. Transitioning from statewide AIDS Drug Assistance Programs (ADAP) and other assistance programs has been anything but seem-less. Blue Cross/Blue Shield Louisiana has arbitrarily decided to not accept third-party payments; this is generally how those living with HIV/AIDS obtain assistance through Ryan White Care Act. 

According to Robert Darrow who started the online petition, "The state's largest carriers is rejecting checks from a federal program designed to help these patients pay for AIDS drugs and insurance premiums, and has begun notifying customers that their enrollment in it Obamacare (The Affordable Care Act) will be discontinued."

 As outlined in a Press Release put out by Blue Cross Blue Shield Louisiana, the insurer states "Effective March 1, 2014, Blue Cross and Blue Shield of Louisiana will no longer accept third-party payments for our individual members' premiums. Only the policyholder or an immediate relative (by blood or marriage) or legal guardian of the policyholder (e.g. parent, spouse, sibling) can pay for that policyholder's healthcare premium." Three of the four health insurers in Louisiana offered through the state-ran Market Place will now essentially deny insurance to people living with HIV who need assistance to be insured.

Why should you be concerned about this if you are not living in Louisiana? The fear among advocates and AIDS advocacy organizations is that the trend that is being tested in Louisiana will set precedence which will become the new standard nationwide. Mark S. King, Kevin Maloney and Dorian Gray Alexander have all taken the fight directly to the insurer via an online media and a petition through Change.org. Additionally advocates in southern-border states are closely monitoring the situation. 

Should Blue Cross Blue Shield succeed the future of AIDS assistance programs for medical and prescription coverage could change for those who are the most vulnerable. If you have not done so already be take a moment to sign the online petition and let you voice be heard today.  

AIDS Discrimination in Louisiana Petition 

Harvard Law evaluation of Blue Cross Blue Shield's Decision on Third-Party Payments

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.