Decisions, Decisions and Downsizing: Switching Over Highly Active Antiretroviral Therapy (HAART) Regimens

By Guest Blogger Rob Quinn

As a long-term survivor on antiretroviral therapy living and thriving with HIV/AIDS, I have thought countless times through the years of switching over to a new HAART regimen. Downsizing to one involving fewer pills to take each day with fewer possible side effects and fewer doses each day. The thought of one pill, once daily with little known side effects sounded almost too good to be true. On the other hand, I’m from the early days of HIV treatment in my thinking where we had few if any options. Thoughts of “if it ain’t broke, don’t fix it,” “side effects are just a way of life,” and “what about drug resistance?” created a barrier to this possibility. Sound familiar?

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It was at an AIDS Project Worcester, World AIDS Day 2013 event where Leif Mitchell, Senior Community Liaison, Boston/New England, Gilead Sciences made a presentation on the HIV Treatment Cascade. Part of his presentation included a discussion on engagement and retention in care. This included: HIV medications, possible side effects of both older and newer generation medications. I recall Leif indicating that with the newer generation medications, HIV-positive individuals experiencing medication-related issues, such as gastrointestinal, may no longer have to. This immediately caught my attention as I had been experiencing such unpleasant side effects for over ten years, often many times weekly. However as fast as it caught my attention, it lost my attention. I was just fearful of switching over. What if the newer medications don’t work? Why change if I am technically doing well (meaning I am virally suppressed) on my current regimen?

A month later at my first quarter 2014 routine appointment and blood monitoring with my infectious disease specialist Dr. Claudia Martorell, owner and director of The Research Institute in Springfield, MA , I was reviewing with her what was going on since my last visit and what I was currently experiencing, such as “my usual diarrhea.” Dr.Martorell said, “you never mentioned diarrhea.” My reaction was simply, “it is part of the journey.” Dr. Martorell echoed and reiterated what Leif had said just a month prior; “it does not have to be.” Dr. Martorell went to further evaluate if what I was experiencing was a side effect of the medications, and sure enough it was. After much discussion and thought, and more than a decade on my previous Highly Active Antiretroviral Therapy (HAART) cocktail of Kaletra and Truvada and still dealing with known side effects of lipodystrophy, lipoatrophy, gastrointestinal (diarrhea several times weekly), I made the decision to say goodbye to the old and welcome a newer generation cocktail of Tivicay and Truvada.

Why now? Dr. Martorell informed and reassured me that todays research shows that HIV-positive individuals, like myself, who are treatment adherent with their HAART, have a stable CD4 absolute count, and have a consistent undetectable viral load, can now switch over with an understanding that if for some reason their body does not respond favorably to the new HAART cocktail, he/she can resume their previous HAART cocktail. A few years back this was not an option for me, as there was a great likelihood of drug resistance. Having this new knowledge made me more confident in switching over. From past experiences, I knew the initial adjustment period for HAART HIV regimens may present many hurdles to clear. However, the time was now and I was ready! I took the next couple of months to physically, emotionally and spiritually prepare myself and my body for this newest path on my journey of living and thriving with HIV/AIDS.

Under Dr. Martorell’s close supervision, the first steps included final routine blood monitoring and now new baseline blood monitoring. For me, this switchover decision meant downsizing to two pills daily and with less known, if any, possible side effects over my current regimen. I recall early on in my journey twenty-one years ago taking upwards of forty pills daily, the first being AZT and at one time Norvir, which required refrigeration – side effects too long to list.

The decision of whether to change regimens and what to change to was complicated and a bit overwhelming. I have to admit I was a bit anxious about changing the life-saving medication regimen which worked so well for me for so long. On the other hand, I was looking forward to a “new color pill” that will undoubtedly improve the quality of my life. In partnership with Dr. Martorell, I made the decision to embark on this new path which I approached with great excitement and positivity. As an inspirational peer recently once shared, “Positive. Just like my blood…positive.”

Other than experiencing an adjustment side effect of insomnia, my body responded favorably!  The baseline switch over results – one month on new HAART Tivicay/Truvada combination: CD4 Absolute at 550 (stable), CD4% at 25.0 (up from 20.7%) and viral load remained consistently undetectable. Insomnia, a common side effect of Tivicay, only lasted about a month. Important to note was that within days my gastrointestinal issues ceased. Well, it has been over a year now and I am happy to report my June, 2015 routine blood monitoring findings: CD4 Absolute is stable, CD4% at 30.4% (a 9.7% increase), and I remain virally suppressed and without gastrointestinal issues!

It is imperative to note that medication effectiveness is only as good as medication adherence. Skipping medications gives the HIV the chance to multiply, increasing one’s viral load. Poor adherence also increases the risk of drug resistance. Therefore, before changing to new medication it is important to talk with our provider about adherence, if this is an issue.

Like everything else on my life’s journey, the more I put into managing my HIV, the more I will get out of gracefully aging  while being fairly healthy with HIV/AIDS. Unlike the early days of HIV, today those of us living with HIV/AIDS have so many viable options for starting or changing HIV treatment. It’s important to not only find another regimen that works for us, but one we can also live with. Lesson relearned: keep informed and up-to-date on medication advancements, new “recommended” regimens, and be sure to honestly share with my provider anything and everything as it relates to my HIV care and overall health and well-being. What was once “a way of life” or unpleasant medication side effect, such as gastrointestinal issues, no longer has to be. The choice is ours!

Thanks much Dr. Martorell and Leif. I am always moving forward and never looking back, except to see how far I have come.

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A Farewell from Julie

Written by BLC Intern Julie Lee

As I get ready to leave the Boston Living Center, I wanted to reflect on some of the experiences I’ve had here and what I’ve learned. I can’t believe it’s already my last week here. I remember my first time walking through those large front doors – I was incredibly nervous because this was my first time doing an internship like this. I was new to Boston, and new to the BLC, and I had no idea what to expect. But I now realize that I had nothing to worry about. I felt truly welcomed that first day, and the members and staff have been so friendly to me every day that I’ve been here.

I’m glad that my internship had elements of direct interaction with members and also some work behind the scenes because it allowed me to do a variety of work. I really think that every conversation I had with a member, no matter how short, helped strengthen my ability to communicate with others and to just be a more pleasant person to be around. I enjoyed participating in the walking group, serving lunch on Tuesdays, and facilitating Game Day! I also really liked attending groups – Chat B4 Dinner and Bridges on Wednesdays – there was a real atmosphere of support every time we all gathered in the library, through the somber moments and through the joyous ones. I remember being ecstatic the first time I got to check in about my week, and I felt supported by everyone in the room.

I’ve learned a lot about HIV/AIDS – way more than I could have learned in any classroom at Dartmouth. I’ve learned about different types of government assistance programs that exist, like housing and food stamps. I’ve learned about HIV medications, healthcare organizations around Massachusetts, and healthcare policies. But beyond facts, I’ve learned some skills as well – through changing the bulletin boards every other week, I learned how to be a better researcher. I learned how to talk to people with different experiences than my own. I learned that even though we might have different priorities, or be busy, we all love a good game of dominoes.

I want to thank everyone who’s contributed to my experience here, even if it was just saying hello. Having grown up in a large city, I wasn’t used to saying hello to everyone I saw or even acknowledging their presence. Saying hello to everyone I saw in the BLC came naturally, though, because it’s clear that we’re here to support one another, and we care. Thank you for teaching me how important support systems are, and making a difference in my life. I hope that I was able to do the same, or at least brighten some of your days.

Thank you and best wishes,
Julie

An Interview With Ma Quinn Part II

Written by BLC Prevention and Education Specialist Caitlin O’Gallagher

This is the second portion of my interview with Pat Quinn, BLC member Rob Quinn’s mother. In the first half of our conversation, Pat shared with me her experience learning about Rob’s diagnosis and what she finds most inspiring about Rob’s work as an advocate for people living with HIV. If you missed the first post, catch up here! Here is the second part of our conversation:

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Pat had explained over and over again that she just accepted her son for who he was, regardless of his diagnosis, and was there with him through thick and thin. When I asked Pat where she gathers the strength to be such a pillar of support for Rob and his four siblings, she commented that she thinks she was just born to be a mother and doesn’t know how to be anything but loving and supportive to her family.

Pat spoke about families who write off their children when they come out as gay or disclose their HIV diagnosis and reflected on many of Rob’s friends who had that exact experience, and for whom she became “Ma Quinn.” Pat mentioned that she connected, through Facebook, with another mother of a man diagnosed with HIV and that they keep in touch periodically. She shared that she remembered the mother having almost the same reaction to her son’s diagnosis as Pat did to Rob’s: it didn’t matter because he was still her son. Pat remembers being struck by their similar, supportive reactions. We talk so much here at the BLC about the importance of social support and having people in your life that you can talk to about the good stuff, the bad stuff, and all the stuff in between. It’s clear that Pat is able to be a great trusted support for Rob, as well as many of his friends. Both Rob and Pat will be the first ones to tell you how important they have found it to be able to lean on one another. As is clear from Pat’s story, the importance of trusted supports and confidants – whether they are your mother, a friend, an old co-worker, or even your mailman – when receiving an HIV diagnosis and living a healthy life with HIV simply can’t be understated.

In that same vein, I asked Pat what kind of advice she would give to a parent or family member who has a loved one who was recently diagnosed with HIV. Pat was sure to say that she can’t give universal advice because everyone is different and will handle the situation differently, but if she could say one thing it would be, “that’s your child – he’s your baby – and you should love him unconditionally no matter what.” She has seen what her unwavering support has provided Rob and realizes how essential it is.

Pat and I ended our conversation by her sharing with me some of who she is and what she likes to do in her spare time. Pat loves to read, especially when it comes to the newest literature on HIV as well as cardiovascular health, she enjoys watching TV, doing puzzle books, and playing games on her iPad. Pat’s story as a mother of someone living and thriving with HIV was inspiring and really reminded me the importance of having supportive people in your life who are willing to stand by you as you fight the stigma, stand up for what you believe in, and just be whoever it is that you want to be.

Thank you SO much to Pat and Rob for your honesty, openness, and willingness to fight the stigma!

National HIV/AIDS Strategy Rundown

Written by BLC intern Julie Lee

On July 30th, 2015, the White House released the new National HIV/AIDS Strategy: Updated to 2020. The new Strategy outlines four main goals: 1) reducing new HIV infections; 2) increasing access to care and improving health outcomes for people living with HIV; 3) reducing HIV-related disparities and health inequities; and 4) achieving a more coordinated national response to the HIV epidemic. The fourth goal is a new addition to the 2015 National HIV/AIDS Strategy, whereas the previous three were goals discussed in the 2010 National HIV/AIDS Strategy as well.

The Strategy also proposes four key areas to focus on: widespread testing and linkage to care, broad support for people living with HIV to remain engaged in comprehensive care, universal viral suppression, and full access to comprehensive PrEP services.

There are also indicators tied to each goal to measure how much progress is being made on a certain goal. There are some indicators that seem very unrealistic, such as “increase the percentage of persons with diagnosed HIV infection who are retained in HIV medical care to at least 90 percent” – 53.8% in 2012 – and “increase the percentage of persons with diagnosed HIV infection who are virally suppressed to at least 80 percent” – 50.1% in 2012. These goals are meant to be achieved by 2020, though, with five percent of the total change expected to occur in each of the initial three years (2011-2013), ten percent for the next four years (2014-2017) and fifteen percent for each of the final three years (2018-2020).

Regarding changes from the previous National HIV/AIDS Strategy to the new National HIV/AIDS Strategy, the new one seems to put more emphasis on providing PrEP and focusing on populations and areas with the greatest burden of HIV. I think that while full access to comprehensive PrEP and PEP services is important, it is equally important to increase public awareness of PrEP and PEP – a lot of people aren’t aware that they exist, let alone how effective they are at preventing HIV infection.

As I begin to wrap up my internship, I’ve been thinking about what I’ve learned. I feel that I know a lot about HIV – compared to what I knew at the beginning of my time here at the BLC. Or, at the very least, I know enough to read the National HIV/AIDS Strategy and be able to fully understand it, and even point out targets that seem unrealistic and areas that lack attention. It feels very rewarding to realize that I have made progress, and I feel grateful for having been given the opportunity to learn so much about HIV and the wonderful community we have here to provide support through living with HIV.

An Interview with “Ma Quinn”

Written by BLC Prevention and Education Specialist Caitlin O’Gallagher

Last week I had the pleasure of speaking with Pat Quinn, BLC member and guest blogger Rob Quinn’s mother. When I originally spoke with Rob about becoming a guest blogger for the BLC Soup, he came fully prepared with a ton of really interesting ideas for blog topics, one of which was to share the perspective of a family member of someone living with HIV. Having had the pleasure of learning about Rob’s story as a person living with HIV, I thought it would be invaluable to hear the story from another angle, from the person who Rob calls “his rock,” his mother Pat. Here is a look into the first half of our conversation:

Once we got our introductions out of the way, Pat began by reflecting on her experience of when Rob first told her about his HIV diagnosis. Her initial reaction was shock, she said, but regardless the first words out of her mouth were, “no matter what, I love you and you’re my son.” While Pat’s support for Rob was unwavering from the start, she reflected that misinformation and stigma from friends and family were not uncommon initially. Pat shared, “In the beginning, people would say how you could catch HIV from drinking out of cups and what not and people were always making cracks about gay people and people living with HIV.” She reflected that “so many of his friends called me ‘Ma’ because half of their mothers and families wanted nothing to do with them… Still not many people come out publicly about it.” Pat shared that things have definitely gotten better, especially with their family and friends, as things are “all good now.” However, in the very beginning stigma wasn’t unfamiliar to the Quinns, as is the same for many of our BLC members and their families. Despite Pat’s reflections being many years old, people receiving HIV diagnoses today often still face the same stigma that Pat remembers.

When I asked Pat what was most inspiring about all that Rob has done in his life, specifically the advocacy work that he has done for people living with HIV, she immediately shared that so many people want to hide, but Rob just goes out and shows his face as a person living with HIV. “I wouldn’t do that,” she said, “I give him so much credit.” She said that at first she was hesitant but then she said, “You know what? Go ahead,” because she knew Rob could make a difference and be a role model – plus she was just the kind of mother that chose to support him in everything he did.

When I asked her further about Rob being open about his status to help others, she mentioned that for a long time, when Rob was living in Springfield, he worked with youth at Commerce High School who were struggling with their sexual orientation and, for some of them, their HIV status. Pat shared that Rob went there and showed kids that it’s okay to be who you are and come out to the world as just that. Pat reflected that Rob always says if he can help just one person then he will be happy. When I asked Pat how she responds when Rob shares that, she said, “I’m just so proud.” Putting a face to HIV and being open about his status enables Rob to fight stigma every single day as well as serve as a support and role model for so many people, including those he may not even know personally. Even though Rob received his diagnosis and shared it with Pat years ago, stigma still remains. Rob’s willingness to put a face to HIV, and Pat’s willingness to support him in doing so, are both just as important today as they were two decades ago.

Tune back in next week to read the second half of my conversation with Pat!

What Do People Know About HIV/AIDS?

Written by BLC intern Julie Lee

For this blog post, I thought I’d survey my friends on what they know about HIV/AIDS. To give some insight into their perspectives, their ages range from 18-22 and all are currently attending or planning on attending college. I asked four questions:

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  1. How many people do you think there are living with HIV in the U.S.?

Responses ranged from 500,000 to 1.5 million. The CDC estimates that around 1.2 million people are living with HIV, so the responses were pretty accurate. I was personally a little surprised at this – if I had been asked this question before starting my internship, I don’t think I would have had any idea.

  1. What do you think the life expectancy of someone living with HIV in the U.S. is?

Responses for this question varied widely. One responder estimated the life expectancy of someone living with HIV to be 3-4 years after contracting HIV. Another estimated 35 years. This suggests that they might have been confusing HIV with AIDS; this surprised me. I thought that my friends would definitely know the difference between HIV and AIDS – maybe not the CDC-defined CD4 cell count threshold, but that AIDS is the final stage of HIV infection. Other responses included age 60, age 75, and almost the same as that of the general population with treatment, which is actually the correct answer. With ART, the average lifespan of someone living with HIV is around their early 70s, compared to 78 for the general population. Additionally, “life expectancy was lower for individuals with a history of injection drug use, non-whites, and in patients with baseline CD4 counts <350 cells/mm3.”[1]

  1. Are there certain populations more at risk of HIV infection?

Two respondents suggested racial/ethnic differences, answering that Blacks/African-Americans were more likely to be infected with HIV. According to the CDC, Blacks/African-Americans experience the “most severe burden of HIV” – they are incredibly disproportionately affected.[2] Two responders suggested that the LGBT population is more at risk, which is also true. The CDC states that “gay, bisexual, and other men who have sex with men (MSM) of all races and ethnicities remain the population most profoundly affected by HIV.” Transgender people are also likely to be disproportionately affected, although there are a number of barriers to accurate data collection on transgender people[3]. Another respondent suggested that drug users were more at risk. According to the CDC, injection drug users represented 14% of those living with HIV in 2011. Responses accurately reflected information published by the CDC.

  1. How do you contract HIV? What are the ways in which you can prevent contracting HIV?

All respondents suggested using condoms as a way to prevent HIV infection. Other responses included using clean needles and avoiding contact with bodily fluids (“blood, semen, breastmilk, etc.”) of someone who is HIV positive. It was unsurprising to me that they knew that day-to-day contact, such as shaking hands or kissing, is not a method of transmission. It was also unsurprising to me that none of them mentioned PrEP as a way of prevention. Coming into this internship, I was not aware that PrEP existed, and I expected my friends to also be unaware.

I would say that the responses above are pretty similar to what I knew about HIV/AIDS before I started my internship at the BLC. I remember feeling like I had learned a lot at the end of my first day here, after I had finished reading up on CDC factsheets and the National HIV/AIDS Strategy for the United States. While reading, I had to look up many terms used in the factsheets: engagement in care, retention in care, viral suppression. I knew that medications to help with HIV existed, but I didn’t know that it was called ART and I certainly didn’t know how it worked. I didn’t know that such large disparities existed among different populations with respect to HIV infection risk. I also didn’t know that there were commonly co-occurring diseases, such as HCV, that makes treatment that much more difficult.

Since that first day, I’ve gotten the opportunity to do more research on topics like women’s health and HIV, HIV criminalization, and cardiovascular disease with relation to HIV. However, I think that my most valuable takeaway has been – not the facts I’ve come to know or the research I’ve done – but learning how to communicate effectively. Every conversation I’ve had here, no matter how short, has been a lesson in supporting others and has made me feel supported and appreciated. Through my time at the BLC, I have come to fully believe in the power of community and support.

[1] http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0081355

[2] http://www.cdc.gov/hiv/statistics/basics/ataglance.html

[3] http://www.cdc.gov/hiv/group/gender/transgender/index.html