First I want to thank one of our champions, Damon L. Jacobs of New York for raising awareness of the damage tobacco/nicotine is doing to our community. Visit his Facebook page https://www.facebook.com/groups/smokingvapingheating: Rethinking nicotine in the LGBT Community. Damon is putting out some great information on this topic. Many of you know him for his awesome work with PrEP!
Being a former smoker myself I know that nicotine addiction is probably one of the hardest drug addictions to beat. I quit about 9 years ago now, and before that, I had quit for 5 years then stupidly picked them up again while at a club. I found it the hardest to resist when I was out partying with friends at the bar, alcohol, and cigarettes were a match made in heaven for me. When I quit for good 9 years ago I wasn’t aware of vaping being popular. The first E-cigarettes became popular in about 2007 in the US if memory serves, approximately a year or so after I quit.
Tobacco has affected me at the most personal and tragic level, my younger brother Ken died of lung cancer at 46 on April 1, 2012, he had started smoking very young and was a 2 pack per day smoker. I left my job and graduate studies to help my mother care for him. He passed 5 months after initial diagnosis leaving behind my 10-year-old nephew. My mother, Judy passed away Sunday, June 22, 2014, of the most aggressive small cell lung cancer. She had never smoked until she was in her late 30’s and was a moderate smoker. We caught her cancer earlier than my brother’s and she went through aggressive chemo, but in spite of everything being done that could be done; cancer eventually spread to her brain, then her liver. I was with her, holding her hand when she passed. It was the hardest thing I have ever had to do. The anniversary of her death is coming and she is especially on my mind now and during the holidays, I suppose losing your mother or father is one of the hardest losses to face. It has forever changed me and I miss them every day. The reason I share these events is not to scare people, but to remind people. Our choices do have consequences not just for ourselves but for those we love. I used to think the dangers of smoking would never affect me and they may not directly time will tell but smoking was the cause of great heartache and loss in my life.
The first time I quit I was the typical ex-smoker nightmare that all your friends warn about, I was a nag to everyone around me, thankfully this go-round I’m not such a bitch about smoking. I do encourage people who are trying to quit and I know vaping has helped many of my close friends kick the habit. I kicked it by buying a pack, smoking one, then cutting them up! It was an expensive way to do it but it worked for me and I encourage my friends and family by supporting them in whatever way works best for them whether it is vaping, nicotine patches, lozenges, or the gum. Sometimes it takes several tries as it did with me but keep after it, it’s worth it, and you’re worth it. With the evidence all coming together it looks as though vaping is the safest way to kick the habit. Just for the record, the temptation to smoke when out clubbing with friends has completely passed.
Published in 1960, To Kill a Mockingbird chronicles lawyer Atticus Finch’s defense of a wrongfully-convicted Black man in Depression Era Alabama. Adored for his courage and integrity, Atticus has since become one of the most iconic literary heroes of the 20th century. This has been one of my favorite books and films since childhood. It taught me a lot and helped me form many of my values and how I looked at the world. What does Atticus Finch have to do with U=U? Valid question, give me a chance to explain.
My ex and I were together almost eight years and for the first 14 months, he harbored a secret. He was living with HIV. We had unprotected sex on several occasions, with increasing frequency the longer we were together. What amazes most people I have shared this with is that I never point blank asked him his status. It was my thought that if he had anything of importance to share he would. One night before going to bed he sat me down and told me had something to tell me. I could see the fear in his eyes. After breaking the news he told me had been afraid to tell me. I was angry, hurt, and afraid. This was in 2001 and I had an almost irrational fear of HIV since 1981. I was in shock and the panic set in. I stormed out of our house and didn’t return for two days.
I stayed with my mom who endured my panic attacks and anger without knowing what I was panicked and angry about. The second night we were watching TV and she was flipping channels until she stopped on TCM and they were showing To Kill a Mockingbird. The scene between Scout and Atticus came up on the screen when Atticus told her “you never really understand a person until you consider things from his point of view…until you climb into his skin and walk around in it.”
At that moment I realized how hard it must have been for him to tell me. We reconciled and were together for another 7 years after this incident. He went with me repeatedly to have myself tested, I was negative. I absolutely believe that it was because he was undetectable and he could not transmit the virus (U=U). I realize that some reading this won’t believe it, but he was undetectable and I admit that I can’t offer any proof to my belief in my particular case. But I can say he is alive and well and last I heard living in the Houston area. I have no doubt that if you stay adherent to the meds prescribed and reach an undetectable viral load you are unable to transmit the virus, this is not an opinion, this is a scientific fact. Scream it from the rooftops U=U! And when you take a break from promoting U=U read Harper Lee’s book To Kill a mockingbird or watch the film.
Until recently I would never have thought I could suffer from PTSD (Post Traumatic Stress Disorder) I had thought that this was a disorder only suffered by members of our military. From the outside looking in most people would agree that I have had an easy life in almost every regard. And I have done my best to perpetuate that image to friends, family, and coworkers. Looks can be deceiving. First I must apologize for the long silence with my blog and I hope all 5 of you will forgive my silence. I have been dealing with depression since 2012. I thought all my issues stemmed from losing my younger brother and mother to the same disease within 18 months of each other. I am certain these deaths of immediate family members drove me into treatment for depression. But I have been fighting depression and PTSD for much longer, years longer.
I am in treatment now with anti-depressants and CBT (cognitive behavior therapy) and I am deeply grateful to my employer and co-workers who support me in my journey to healing. It’s been a roller-coaster of a journey with many ups and downs. One experience in particular stands out for me, at the age of 17 I came out and began working at a gay club. At 17 I was painfully naive. One afternoon two older men that I only knew from the club took me to their apartment across the street. I didn’t pick up on anything out of the ordinary and didn’t realize I was invited over for sex. I was raped by both men. The experience led to a distrust of men and has bubbled to the surface frequently over the past 30 plus years. I always felt guilty, that it was all my fault, “I must have sent the wrong signals” or “shouldn’t have trusted two practical strangers”. I never shared this experience with a soul. It was made worse by the fact that the two guys kept coming to the club I worked in, I felt shame and embarrassment every time I saw them. I left that job within six weeks of the incident and never went back.
Through therapy I now realize that experience had a profound effect upon my life, my sexual life, and in my relationships since that time. Many times the guys I dated would tell me that I was “closed off emotionally” and I suffered from sexual hang-ups too. I always had to be the one in control of the situation, to be the one who “topped” eventhough I have always desired to experience that closeness and trust that comes from “bottoming” but could never still my fears and make myself vulnerable. Then AIDS rocked our world and the sexual landscape for gay men changed. AIDS related diseases took my friends, often seemingly a whole neighborhood in Oaklawn would disappear overnight.
This fanned the flames of my insecurities and fear surrounding my sexuality in general, and sex in particular. This was aggravated by my religious upbringing and my families disapproval. But we’ve come along way, HIV is no longer a death sentence thanks to the advancement of anti-virals those who are now diagnosed with HIV can expect to live normal life spans and if adherent to viral suppression don’t need to worry they will pass the virus to their partners. Pep and PrEP have been added to the arsenal in addition to condoms that give negative men and women the tools to protect themselves against HIV. So get tested and KNOW YOUR STATUS! I have made it this far and will continue to heal; my biggest regret is that I didn’t start this process many years earlier.
My purpose in sharing this now is to help others, especially LGBTQ youth to know that tomorrow will come, there is help available, and it does get better. Never allow anyone to put you down, being LGBT isn’t a choice it’s how you were beautifully made. Reach out to your local ASO, talk to a friend you trust, seek professional help if you need to, call the Trevor Project, a national, toll free, confidential suicide hotline for gay and questioning youth. The Trevor Project can be reached at 866.488.7386, 24/7 if you are feeling suicidal or just need to talk. On the web visit itgetsbetter.org for links to services in your area. If you are dealing with gender questions the Transgender Suicide Lifeline is 877.565.8860 or online at translifeline.org
I have now been through my first health check after taking Truvada for PrEP. I have completed 3 months on PrEP and all my blood work came back within the normal range. No STI’s and I’m still HIV negative, no adverse effects on my kidney or liver function.My PCP was pleased with my test results and I will continue on the PrEP regime and get HIV and blood work done again in 3 months!
I am relieved that the tests didn’t show any adverse effects on my kidney or liver function. My adherence has been good overall, I have missed a couple of doses over the first 90 days. Since switching to a bedtime dosage I have taken my little blue pill daily. I am glad that I decided to commit to taking PrEP because it has eliminated my anxiety concerning sex and intimacy. I have vivid memories of the early days of the epidemic, losing many of my friends to AIDS.
In fact it’s difficult to remember what it was like before HIV. I came out at 17 way back in 1978! So I had a few years free from the worry of HIV and AIDS then my friends and loved ones began to disappear. The rest of us were to left wait our turn to get sick and to die but this never happened to me. I remained HIV negative for reasons I will never know or understand.
It’s hard to explain to the generation born in the eighties and nineties. They didn’t witness almost an entire generation of their peers disappear in what seemed like a blink of an eye, promising young lives, many gone before their thirtieth birthday. I do have “survivors guilt” and miss my friends and loved ones lost to AIDS. I remember them often and especially everyday when I take that little blue pill.
Miles Jay Oliver, firstname.lastname@example.org:03 a.m. CDT April 4, 2016
The next step in the fight to end the transmission of HIV has found its way to Shreveport.
In 2012, the FDA approved a combination of two HIV medicines for daily use to help prevent individuals from getting HIV from a sexual partner who’s positive. The concept of taking HIV medicines daily to lower the chance of getting infected from a partner living with HIV — more commonly known as Pre-Exposure Prophylaxis — recently caught the attention of local advocates, and many have now dedicated resources and time to educate northwest Louisiana on its benefits.
Chip Eakins, advocacy coordinator for The Philadelphia Center in Shreveport, has presented the benefits of the drug to about 50 people locally. He plans to target universities in the future.
Eakins recently embarked on a journey as educator and proponent of PrEP.
“I wanted to know firsthand how easy or difficult it would be to get on it,” said Eakins, who writes about the process, expense and side effects associated with PrEP on his Philadephia Center blog.
Eakins, who does not have HIV, began taking the drug in January.
“I may meet someone who is HIV positive that I want to be in a relationship with and this will make it less stressful for me and for them,” he said.
What is PrEP?
PrEP is a general treatment term for specific types of medication taken to prevent the transmission of HIV.
At present, the only medication approved by the FDA for PrEP is Truvada, a pill manufactured by Gilead. The drug combines two anti-HIV medications — Emtriva and Viread — in a single tablet form. In addition to its approval for use in prevention, Truvada is used in conjunction with other medications to directly treat HIV-positive patients.
A 2012 study that led to FDA approval of the medication for PrEP, found a great reduction in the transference and transmission of the virus between parties as compared to those who received a placebo. The study included heterosexual couples with one partner who was HIV positive.
Since its approval for PrEP, Truvada is a medication that has found its way into dating profiles and modern social consciousness — particularly in the gay, bisexual and transgender communities — more specifically between men who have sex with men.
In a known case of an individual believed to be adherent to PrEP contacting HIV, transmission was believed due to the fact the individual had sexual contact with someone with a strain of HIV highly resistant to treatment.
The Centers for Disease Control recommends patients taking Truvada do so daily for the maximum amount of protection. Men who have sex with men can expect maximum benefits to begin within seven days, but benefits for women can take longer to reach maximum potential.
“It’s the same thing as being adherent to HIV medications in a way,” said Eakins. “They tell people that are HIV-positive that you must adhere to your regimen and take your medicine every day or your virus is going to rebound. They won’t be undetectable anymore.”
People with HIV may refer to themselves as detectable or undetectable, but it’s clear that others may not understand what these terms mean.
“Undetectable means there is not enough virus in your blood stream to show up on a test,” said Eakins. “You’re still positive and less likely to transmit the virus, but you’re still positive.”
HIV-positive individuals who say they are undetectable are 98- to 99-percent less likely to transfer the virus, but viral loads in patients can fluctuate, particularly when they are less adherent to their medication regimen, according to Eakins,
“There’s only so many medications out there,” he said. “You’re playing Russian roulette when you start adhering and then not adhering.”
Access to PrEP
Agencies such as Acadiana CARES in Lafayette and The Philadelphia Center in Shreveport focus on educating the public on HIV prevention, helping the public access testing, and assisting in the procurement of medications for prevention and treatment. .
High risk individuals without HIV, particularly those with multiple sex partners, should educate themselves on PrEP, said Eakins.
PrEP is not a substitute for condom use. However, when combined with other forms of risk reduction, it will decrease — or eliminate — rates of new infections of HIV, especially among those aged 14 to 24. Increased rates of infection are showing in that particular age group, mostly among males who have sexual contact with other males.
Rates also are increasing in the African American community and in populations where economics, discrimination, and easy access to medical care are major barriers to education, prevention, testing, and treatment, Eakins said.
The goal of PrEP treatment is to eliminate new cases of HIV, but information and education are the first steps toward achieving that goal, he said.
The next barrier is accessing the medication.
How patients access Truvada
Access to PrEP is one of the largest challenges at this time, according to Thomas Huseby, a case manager for people living with HIV at Acadiana CARES in Lafayette.
He said some medical providers are not yet aware of PrEP and some may be uncomfortable prescribing it. There also are many perceived complexities in prescribing anti-HIV medications.
Primary care providers can prescribe PrEP after determining an individual meets the criteria set by the screening process, he said.
“Primary care providers can and should prescribe PrEP when appropriate,” said Huseby.
Many people, including medical providers in the community, believe only infectious disease specialists can write prescriptions for the medication, but that is not the case, according to Huseby.
“Prescribing PrEP essentially guarantees each patient will have a minimum of four medical visits each year,” said Huseby of what he believes could be an otherwise missed opportunity for Louisiana physicians.
Huseby said many potential PrEP patients are younger and otherwise less likely to regularly visit a doctor. “PrEP is an unrealized revenue maker.”
The CDC has guidelines for medical providers on how to properly prescribe PrEP, and those guidelines include a set of criteria that can help a medical provider determine what patients should be considered for the medication.
There are multiple resources for medical providers to consult when they have questions regarding the treatment, Huseby said. He hopes more providers in the state of Louisiana will do so because of limited availability to the medication in many areas.
“Your primary care physician is the one person you should tell everything,” said Eakins who noted that there is much more to Truvada than simply taking the medication every day.
Patients on PrEP should be fully educated on the medication and should report to their physicians for regularly scheduled tests on kidney function, liver function, bone density and continued HIV testing.
“To be on PrEP, you have to be negative,” said Michael Freeman, the wellness coordinator for the Wellness Center at The Philadelphia Center.
Freeman assisted in starting a PrEP clinic in Monroe in 2014. It exists as a point of access and follow-up testing site for patients. Freeman is working to create a similar clinic in Shreveport. His first step is to find a physician with whom to collaborate. Freeman typically does all the footwork, paperwork, and follow-up testing involved with running such a clinic and needs a doctor to open the clinic.
Although Freeman said the process is off to a slow start, he hopes to find the right medical collaborators to help him very soon.
Costs associated with PrEP
Truvada retails for about $1,500 per month because it is a top-tier specialty drug. Its manufacturer Gilead offers programs for assistance with the cost through their website, said Huseby.
“It’s not inexpensive, but it’s accessible,” said Eakins, who noted that coverage from health insurance varies among plans. Gilead offers a co-pay assistance card that can defer some or all of the cost left after insurance has paid. The manufacturer also offers different programs for those without insurance.
“It’s a lot less expensive than lifetime treatment,” said Eakins, who hopes to continue seeing more programs and medications to eliminate new cases of HIV in the community.
Did you know there are different forms of HIV?
When HIV replicates by infecting a new cell, mutations can occur and there can be different types of HIV, even within a single person living with HIV. HIV-1 and HIV-2 are two totally different viruses. HIV-1 is the predominant virus worldwide, while HIV-2 is particularly concentrated in West Africa.
The strains of HIV-1 are classified into four groups. Group M is the major group because it is responsible for the majority of the global HIV epidemic. Groups N, O, and P are mainly found in areas outside the United States.
Groups are further divided into sub-types. HIV-1 has at least nine genetically distinct sub-types and geographical patters can start to emerge when looking at the various sub-types.
Steps to accessing and taking PrEP:
1. Get Educated!
2. Get Tested!!
3. Go to your primary care doctor and tell her/him everything — doctors are not mind readers and they are of maximum assistance when they know everything they can about you and your body.
4. Take the medication daily. Missed doses show reduction in the efficacy of the drug.
5. Continue to meet with your doctor for routine follow-up testing and care
Sources: Chip Eakins of the Philadelphia Center and avert.org.
I am now at almost sixty days on Truvada for PrEP and have only changed one thing, I now take it in the evenings instead of the morning. The drug hasn’t made me into a “Truvada whore” a term I hate by the way, it’s shaming and promotes stigma, so those of you out there using it, STOP IT! We have enough problems in our community without adding to our own stigma.
If you are HIV negative I challenge you to look into PrEP as a possible tool for protecting your sexual health. It’s not for everyone but if you are sexually active it’s a good backup for condoms. Let’s be honest here, some guys don’t like condoms and would rather rely on PrEP for protection from HIV. If this is your attitude towards using PrEP then so be it; I don’t recommend it due to STI’s but it is certainly better than not being protected at all! That being said you should certainly get yourself checked regularly for STI’s in addition to HIV.
Condoms aren’t fool proof either, you have to use them every time, and though rare they can break. I’m just saying that having that back-up is great piece of mind. The added bonus? If you find Mr. Right and he’s HIV positive you are already protected (though nothing is absolute). Even if your Prince Charming’s viral load isn’t undetectable, having an undetectable viral load is every HIV positive person’s goal but this isn’t achievable for everyone, even when adherent to treatment.
Since we last spoke I have been on Truvada for PrEP for 21 days! As many of you know it’s recommended that your take the 1 pill per day for 7 days in order to reach maximum protection levels in the bloodstream. So now I’m well past that point, in fact it’s time for me to call in for the refill. My doc prescribed 3 refills at 30 per month. I have had only a couple of side effects that were temporary and very mild. I decided to take mine in the mornings as part of my am routine, only I found that not eating breakfast gave me a little nausea and slight headache. Rather than taking it in the evenings I just try to eat a little something besides coffee and those side effects have gone away. Don’t let the fear of side effects keep you away from PrEP, they are very rare. Just remember to adhere to the 1 pill per day, so far I have not missed a dose!
Thanks to the Gilead Co-payment plan offered on line the script costs me nothing out of pocket. But the confidence that PrEP has given me is the best part, I don’t have to be concerned what my partner’s status is, and they don’t need to worry whether they will pass the virus on to me if they aren’t undetectable! The more likely event that would expose me to the virus would be unprotected sex with someone who is unaware of their status which is also no longer a major concern for me thanks to PrEP. This has set me free in my sex life and I am once again open to all possibilities, I enjoy sex, and I enjoy the intimacy that comes with being with another man regardless of his status. We are HIV equal in a sense. I can pursue a relationship with anyone regardless of their status and this is the best gift of all!
I know that some reading this are ready to explode because I haven’t said anything regarding condoms etc, etc, etc. I know that PrEP is only effective against HIV and not STD’s I get it! I also take responsibility for my own sexual health and that of my partner, condoms are an essential part of the toolkit in preventing the spread of HIV and especially STD’s. However, this being said my partner and I choose what methods we will use in the sack and having that versatility makes for a much more pleasurable sexual experience.Life is not without risks, sex is not without risks, but PrEP is another tool that is important in helping to mitigate the risks and that is the best we can do until there is a cure and a vaccine. My goal in writing about my journey on PrEP is to educate and raise awareness of PrEP. Part of my duty as an advocate/activist is to ensure that all who can benefit from PrEP have access to it irregardless of ability to pay.
I am talking to our local Gilead representative to see just where we are in terms of availability of PrEP, my doctor doesn’t want me to publicize where I got the RX for Truvada for PrEP; she is concerned about being overrun with patients wanting the drug. I was fortunate that she prescribed the drug for me, and that’s only because I work for the local AIDS Service Organization, the Philadelphia Center here in Shreveport, LA. I have been to conferences that had Truvada presentations, the last was in Memphis at the “Getting to Zero in the Mid-south” conference in November of 2015.
What is distressing is the fact that the FDA approved Truvada for PrEP back in 2012 and so few of our local PCP’s are knowledgeable about it and willing to prescribe it. This has to change quickly, it would seem we are way behind the learning curve here in Shreveport, LA on this issue in 2016. The stigma surrounding sex and HIV particularly in the south seems to have negatively affected Gilead’s marketing of Truvada, at least here locally. I have never seen an ad on the side of a bus, a bill board, or a TV ad for PrEP here locally. I am hopeful that those currently seeking access to PrEP will be able to get an affordable script for it, in the meantime we must continue to advocate for ease of access to PrEP.
In my last post I talked about being anxious about my appointment with my primary care physician. My anxiety was unfounded, “I’m a bit of a nervous nellie” (pun intended) when it comes to taking medication. I was also worried that my doctor wouldn’t prescribe PrEP, or even worse not know anything about it. I was pleasantly surprised on both counts! They had already started a few patients on Truvada for prevention which made the conversation much easier, then it got a little weird.
My PCP knows I’m an HIV advocate and informed regarding PrEP, that’s the only reason I got the script. They knew I would follow the protocol being tested for HIV and getting the necessary labs to monitor liver and kidney function etc, etc, etc. My doctor then asked that I not “advertise” where I got the prescription because they weren’t aware of any other PCP’s writing…