Written by Heath Wagoner Edited by Cynthia Cromwell
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Written by Heath Wagoner Edited by Cynthia Cromwell
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“THE GENERAL POPLUATION STILL THINKS HIV IS SOMETHING THAT CAME IN THE 80’S AND WENT AWAY
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OR THAT IT ONLY AFFECTS THE GAY POPULATION OR INTRAVENOUS DRUG USERS.”
ANNIE LENNOX
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Aknowledgements
Thank you to Allan Chochinov for taking a last minute chance on me that changed my life forever. Thank you to Cynthia Cromwell for all your support, editing skills, and encouragement.
Written by Heath Wagoner Edited by Cynthia Cromwell 2015
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Table of Contents 8
Intro HIV a Break Down
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Disclosional
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Stigma
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The personal fears that led me here.
24 Kiosk 31
Goals and Objectsives the intentions of this thesis 36 Millenials 38 Daddies 40 HIV Slang Turns into a Solution
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Goal 2. 64 Oraest
70 The History of HIV 81
How a Good Brand can Change Everything
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How a Good Brand can Change Everything
103 I Began with a Successful Failure 114 MSM a breakdown 122 Stats 128 PrEP
132 My Journey 136 User Testing 144 Harm Reduction
160 Disclosional 162 164 168 172
Thought Process Ideation Partnership Execution
190 My Final Thoughts 193 Bibliography
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HIV JUST IN CASE YOU DIDN’T KNOW
HIV, or human immunodeiciency virus, is a lentivirus that causes the acquired immunodeiciency syndrome or AIDS , a condition in humans in which progressive failure of the immune system allows lifethreatening opportunistic infections and cancers to thrive. This is a virus that now rarely develops into AIDS in the United States. Due to new drugs and easily accessible HIV health care it has become a manageable chronic illness that is unfortunately on the rise again and surrounded by intense amounts of stigma
and fear. While there is not immediate threat of another AIDS epidemic like that of the 80’s, there is no reason for a generation of young men to have to take medications and deal with stigma everyday of their lives. HIV is transmitted by blood and semen, which sadly many people still do not know. You can’t get HIV from a toilet seat, a kiss, or a little bit of cum in your eye. It is this lack of knowledge that keeps many men living a life of shame and denial. This thesis aims to change the way we talk about HIV and remove the stigma.
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DIS· CLO· dis’ klO Disclosional is the graduate thesis I have written, designed, performed, and pursued in the Products of Design department at School of Visual Arts in NYC. This is a thesis built on conversation about HIV. Conversation is the formative idea behind Disclosional and its aim to make talking about HIV easier and to remove stigma. Disclosure was designed from personal fears and experiences. It is built on the shoulders of HIV History, and Successful Failures are its materials, along with interactions, conversations, and experiences. Disclosional will break down my work along with the past, present and future stats of HIV that have inluenced this thesis. The work presented represents a years worth of ideation and process in NYC, which was the epicenter of the HIV epidemic in the 1980’s. This work is a combination of experiences, speculative objects, digital platforms and design interventions. While much of the work lives within this book, other aspects of it live in the collections of organizations or in the outreach cabinets of clinics. Disclosional also serves as a guide for those who are part of the men who have sex with men (MSM) community and for those who are not.
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SION· AL SH(e)n(a)l This book will be able to be used by both groups. Disclosional can serve as a guide for newly diagnosed HIV youth or as a tool for friends or family of HIV positive people. This thesis breaks down the HIV community in a way that is easy to navigate for those who are in the community, and in a way that leads for those who are not. This thesis is half scientiic research and half experiential research.
Diclosional is a manufactured word made of the words “disclosure” and “confessional.” This word was brought on during my ideation around what to call my event for my design experience of the same name. The general idea behind Disclosional is that you have to confess to yourself before you can disclose to others. Disclosure is the action of making new or secret information known. In the HIV community, Disclosure is the action of letting someone know your status, whether it be a friend, a family member, or a potential lover. It is an action that is surrounded by stigma and incredibly hard to do. Disclosure is important to prevent HIV, because when others know one’s status they can take the necessary precautions to keep themselves safe. It is with this thesis that I aim to turn Disclosional into a way of being an action rather than just a word.
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STI GMA WHAT IT IS What is stigma? HIV-related stigma and discrimination refers to prejudice, negative attitudes and abuse directed at people living with HIV and AIDS. The consequences of stigma and discrimination are wide-ranging. Some people are shunned by family, peers and the wider community, while others face poor treatment in healthcare and education settings, erosion of their human rights, and psychological damage. This kind of treatment can occur anywhere. Just because someone lives in a large progressive city does not mean they can always escape some forms of HIV discrimination. In small communities, people can be seen as a pariah and often experience societal disapproval and diiculty in receiving medical services. In the past, healthcare workers 14
did not want to interact with HIV positive individuals. In large cities, while it can be easy to ind great health care and support groups, inding friends can become hard and dating can become even harder. With rejection, disclosure becomes increasingly diicult. These people who are most afected by stigma are referred to as key afected populations. Key afected populations are groups of people who are disproportionately afected by HIV and AIDS, such as men who have sex with men, people who inject drugs and sex workers. Stigma and discrimination is often directed towards these groups of people simply because others disapprove of their behaviors.
Stigma also varies depending on the dominant transmission routes in the country or region.In many parts of the world, HIV is still seen as a disease experienced by gay men and is a byproduct of their party and promiscuous lifestyles. These people are increasingly marginalized not only from society but from the services they need to protect themselves from HIV. Half of all new HIV infections worldwide are among people belonging to key afected populations. People who are afected by stigma are four times less likely to report poor access to care as well as less likely to get tested for fear of having to deal with this poor care. According to the International Center for Research on Women:
“The epidemic of fear, stigmatization and discrimination has undermined the ability of individuals, families and societies to protect themselves and provide support and reassurance to those afected. This hinders, in no small way, eforts at stemming the epidemic. It complicates decisions about testing, disclosure of status, and ability to negotiate prevention behaviors, including use of family planning services.�
THE FIVE TYPES OF STIGMA According to Avert, there are ive major types of stigma around HIV. They are: Self stigma/ Internalized stigma Governmental Stigma Healthcare Stigma Employment Stigma Community and Household Stigma.
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S E LF STIGMA
GOV E RNME NTAL STIGMA
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Self stigma is the fear that you are somehow damaged and that you are going to harm those who you love or those who are around you. I once went on a date with a guy who said: “If I were to ind out that I had HIV I would lock myself away in my room and never go on another date again.” It is this self-loathing behavior that can cause people to not get tested in the irst place, thus creating a culture of people who do not know their status and furthering the spread of HIV.
The second type of stigma is governmental stigma. This kind of stigma is brought on by government regulations put in place to limit an individual’s ability to access care. One example of this would be Russia making needle exchanges illegal or making homosexuality a crime punishable by death, like in Uganda. While the United States allows people to live freely, there is still a nationwide ban on federal funding for needle exchanges, thus making it harder for intravenous drug users to seek the tools they need to stay HIV free. The majority of US states have some form of HIV protection, although there is no comprehensive law in the US protecting HIV positive people.
H E ALTHCARE STIGMA
E MPLOYMENT STIGMA
Healthcare stigma prevents many people from being honest to healthcare workers when they seek medical help. People fear discrimination if they tell their healthcare provider that they are having samesex relations, they are not using condoms, or they are sex workers. For example, men who participate in bareback sex parties often do not end up going to get tested because they do not want to face the judgement of healthcare workers. In rural communities, especially in the South, healthcare workers allow their religious ideology to cloud their ability to practice non-biased healthcare. There are multiple stories of healthcare workers in such small communities lying about the results of the test subject due to their judgement of the lifestyle of the test subject. This is coupled with a recent study stating that over 40 percent of the country’s doctors do not know the sexual preference of their patients.
Employment stigma used to be one of the biggest fears for newly diagnosed HIV positive men in the 1980’s. This was because they could be ired over their status or denied work. Without work they could not aford their homes or health insurance. Things have changed now in the US. One can no longer be ired for having HIV, although it can be a point of discrimination from hiring as many employers can still ire LGBT members. There is also a fear that comes from one’s interactions with their coworkers. Some coworkers may distance themselves from the other person or even go so far as to ridicule the person. This is an example of one of those situations. “It is always in the back of your mind, if I get a job, should I tell my employer about my HIV status? There is a fear of how they will react to it. It may cost you your job, it may make you so uncomfortable it changes relationships. Yet you would want to be able to explain about why you are absent, and going to the doctors.” - HIVpositive woman, UK 17
COMMUNITY STIGMA
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Community stigma is by far the most common, especially in the gay community. There is a large divide in the community especially from young gay men. This is one of the reasons for the alarming rise HIV in the younger generations of MSM men.The stigma surrounding HIV/AIDS remains strong among young people, with more than 60 percent saying they would be “uncomfortable” with an HIV-positive roommate, or even having food prepared by someone who is infected, per the Kaiser Study. Eighty-six percent said they would be “uncomfortable” being in a relationship with an HIV-positive person. Community stigma leads to people treating HIV positive people like they are dirty. There has recently been a campaign called #we’reallclean started by Jack Mackenroth to change how we talk about HIV positive men and to remove the stigma around HIV.
THE PERS PERSONAL ONAL FEARS THAT T LED ME HERE
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This thesis is a byproduct of my personal fears and experiences surrounding HIV. Initially this was an exploration into ways that people can access tools that prevent HIV such as needles and condoms, stemming from my past experiences. This then evolved into a closer relationship with the subject based on past relationships and regular behavior as a gay male living in a large city. My irst interest with HIV came when I was 21 during a visit to the Asheville Museum of art with my godfather Bryan McGreen. He had survived the AIDS crisis and took me to the exhibit to see the pieces of the AIDS
quilt. It was overwhelmingly powerful and will stick with me the rest of my life. While there, I saw a lady playing music in memory of friends she has lost. Seeing the quilt in person is a very powerful thing. Any time someone sees the names of the fallen, it is a moving experience. Looking back, I remember being a child in the 90’s and how my mother had a patient who was dying of AIDS. Every Saturday she would go to spend time with him. I did not know at the time what he was dying of, but I just knew she had a friend who was dying. It was not until I was in my irst year of college and coming out as a gay male that she shared this with me.
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The irst venture into HIV prevention through this thesis occurred in the summer of 2014 when I began researching the massive increases in HIV in Greece. As a GreekAmerican, seeing a crisis in Greece I felt like I could ofer a design solution. Austerity measures had caused an end to needle exchange services, resulting in a 200% increase in HIV since the start of the economic crisis. My other connection to this was my past experiences living with an intravenous drug user. Growing up, my father was an intravenous drug user. I saw irst hand how an addict thinks and interacts with the tools they use to get high. At a younger age, I did not understand the importance of clean needles to reduce the spread of disease. I only saw them as a tool to continue the use of drugs. As an adult, I now realize the importance of clean needles. It is more important that people have access to clean needles than forcing them to quite. Using my past insights, I thought that the best design opportunity for this crisis in Greece was to design an automated needle exchange that would not cost the government large amounts of money, but would still keep the population safe. This design led me to start volunteering at a needle exchange upon the request of a friend. Once there, I quickly learned about how needle exchanges ofered a physical space, emotional support, and a sense of community on top of preventing HIV. I also learned more about HIV testing.
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“Cuts in HIV-prevention have coincided with a 200% increase in the virus in Greece, driven by a sharp rise in intravenous drug use.” Dr. David Stuckler, Author of “The Body Economic, Why Austerity Kills
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Branded Logo
Coca Car
Inquisitive Communication Screen
WHAT DO Y Multiple Dispensers
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Cola res
Easy to use Touch Screen
Key Pad Card Slot
YOU NEED?
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Learning more about HIV testing allowed me to really look into my psyche and see what it was that scared me so much about preventing HIV. What scared me so much was the experience of testing itself. I, along with many other men, am afraid of getting blood drawn. Even a inger prick can be a stressful event. There are other aspects of the testing experience that are very stressful. Many times when you get tested you have to go from one room to another to get your results, on top of the time that the test takes to give results. Some men do not want to go through this experience to ind out their results and are so ashamed of potentially being positive that they do not want to know. There is also a large community of men who do not use condoms. These men avoid getting tested for fear that they will be berated by the testing staf for not using condoms. At the Lower East Side Harm Reduction Center (LESRC) they do not berate the participants about not using condoms. They talk to them about their behavior and try to get to the bottom of why they practice this unsafe behavior.
“These people putting themselves at risk by not using condoms are influenced by something else. Lack of family, structure, and mental health issues from the past have caused them to take part in this self-destructive behavior.� According to Sadat Iqbal who is the director HIV outreach.
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They use Pre-Exposure Prophylaxis (PrEP) as a tool to keep these men safe. While at the needle exchange, I also learned an invaluable amount about PrEP. While PrEP has been around for a while, PrEP is still fairly new to the MSM community. It has only recently begun to become widely adopted and even featured in mainstream media. I began to do more research around it, from its initial trials to its cost and availability. This knowledge and ability to talk about it with experts on top of
entering a committed relationship, allowed me to formulate a strong stance on PrEP. At one point, I was contemplating what it would be like to take PrEP throughout my thesis. I also did a brief experiment in pill adherence where I took a daily placebo and documented it. This stance of PrEP’s value has gone from interested, to deiant opposition, to inally seeing its potential as great tool to protect men who are in serodiscordant relationships.
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A SERODISCORDANT RELATIONSHIP IS A SEXUAL RELATIONSHIP BETWEEN ONE HIV+ AND ONE HIV- PARTNER.
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While new to many of my peers and my professors, itis nothing new to me. I have been in multiple serodiscordant relationships. For a while, this seemed to be a theme in my life. I would meet a guy, he would be so nice, and then he would tell me he had HIV. Usually before we had sex, but one time after. These experiences formulated an opinion that dating HIV positive men was not something to be avoided, but rather something to go at with caution. This introduction to PrEP and research around it informed me to the rareness of my opinion of HIV positive men. Unfortunately, many men have stigma towards HIV positive men, and this results in fear towards disclosure. This fear and prevention of disclosure can result in the spread of HIV. I have experienced this irst hand. I went on a date with a guy, and the night took its course. Things were going really well. He did not disclose before intercourse took place and waited a week to tell me. Even though we used a condom and nothing happened, he was still afraid because of stigma to disclose to me. He was afraid that
if he told me, I would turn him down. This is a fear that many people experience. Rather than face the hurt of rejection or scrutiny they choose not to disclose. Instead they may use a condom and nothing will happen and they will never speak of it or they will wait until afterwards to disclose, thus destroying trust. In the worst case scenario, something goes wrong and the virus is transmitted. Thus infecting the unknowing partner. I saw this as the greatest pain point to the MSM community. While HIV afects everyone, I chose to narrow down my thesis to MSM because it is the community that I am associated with. I am at risk and understand the risk. Men in the MSM community ages thirteen to twenty-four are at the greatest risk of HIV. They are also the community with the greatest increase in HIV. I saw this fear of disclosure and increased stigma as a major pain point and as a great opportunity to use disclosure itself as a tool to prevent HIV.
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GOALS AND OBJECTIVES. The intention of this thesis.
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In this graduate thesis my goal is to explore how disclosure can be a tool in educating about and preventing HIV. It is with this thesis that I have made it my objective to ind new ways for HIV positive men to disclose their status in hopes of preventing further infections. The irst objective of this thesis is to create a platform that allows HIV positive men to disclose their status. The second objective is to create a new at-home testing device that plugs into a smart phone and connects the user to a larger community within the app. By achieving these two objectives I will hopefully develop a new way to create conversation about HIV and prevent new infection. I chose disclosure because it is the most accessible tool that any one has in the ight against HIV. While it is accessible, it is the hardest for many to use. Disclosure is a fascinating
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realm of human behavior and one of the most diicult. By exploring disclosure I have an apportioning to understand how people talk (or don’t talk) to one another. It is often avoided in most cultures because of the problems arising after disclosure. This lack of disclosure is one of the leading causes of HIV increases in industrialized nations. The reasons people do not disclose their status vary for many reasons. In a study conducted in 2004, reasons for not disclosing HIV included themes such as HIV is nobody’s business, denial, having a low viral load, being undetectable, fear of rejection, ‘it’s just sex’ using drugs, and sex in public places. Others simply do not disclose because they assume that if not asked then their partner must be negative.(P M Gorbach et. al)
Two of the excuses mentioned are fear of rejection and denial. These are extremely problematic in making disclosure less scary and more normal. The current fear of rejection facilitates the need for a platform that allows HIV positive men to disclose their status. I think that an app would be an appropriate solution to this problem. It has been proven that people have trouble disclosing even their symptoms to their own doctors, let alone their sexual partners. In the recent journal Computer in Human Behavior it was found that people disclosed information more honestly and openly when they were told they were speaking exclusively to the computer. The participants also “reported signiicantly lower fear of self-disclosure� under those circumstances. (Gutkin et al). It was also noted that VH (virtual human) interviewers elicited more honest responding
from the sense that no one is observing or judging. This makes the experience much easier, making self acceptance easier as well. It is this sense of freedom from judgement that I think would help make an app the perfect platform. An app for disclosure would have to be a combination of virtual human and social media platform. This app would not just be a tool for self disclosure but also a tool for community based disclosure. The irst hurdle in achieving the goal of a disclosure app would be the removal of judgement. While millennials are more apt to share their private information with apps or social media, those who are thirty plus have been proven to have an aversion to openly sharing with technology. Both demographics are important to such an app though.
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The Millenials Millennials are a generation of tech savvy and often comfortable with sexual identity. They have grown up with Facebook and can easily wrangle a hook up on Grindr or Scruf. However, they are also the generation becoming the most disassociated with HIV. Many do not know anyone with HIV, making it seem like a problem that will not afect them. This is the generation with the highest increase in new infection rates.
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“ACCORDING TO THE CDC, IF HIV CONTINUES TO SPREAD AT ITS CURRENT RATES, MORE THAN HALF OF COLLEGEAGED GAY MEN WILL HAVE HIV BY THE AGE OF 50”. 37
The Daddies Unlike their digitally native counterparts, the thirty plus sect is very much aware of HIV and the trauma that comes with it.This group is made up of the thirty somethings, the forty-somethings, and anyone who was lucky enough to survive the AIDS crisis. While thirty-somethings are not connected the AIDs crisis of the 80’s, they are 10x more likely to know someone in their social circle who has HIV. The thirty something is also not as free with social media as the millennial. Cyberbullying and trolling are still new to this digital pioneer, making disclosing any information on the internet harder. The forty-somethings and everyone else is likely to remember the horrors of the AIDS crisis. They are the late adopters to Facebook however they probably have a hookup app if they have a smartphone, thanks to the rise of the “daddy.” The “daddy” is the new ixation of masculine perfection in the gay community. He is in his late thirties to early forties, is seen as stable, and salt and pepper is seen as sexy. I will call these two groups the men and the daddies.
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For a disclosure app to work well, it would have to combine the easy to use feel of something like Instagram or facebook, and the security of a banking app. This would make it attractive and easy to use for the completely connected millennial, and safe enough for the digitally pioneering, privacy wary, men and daddies. This new interest in the older man in gay culture is the irst perfect opportunity for a conversation about disclosure. This sexiication of the men and daddies in the eyes of the millennials, gives them the perfect opportunity to share their stories to a community eager to hear what they have to say. 39
The app I want to create is called HiV. It combines text, video, image sharing, and audio, to create a platform for HIV positive men to disclose and share the story of their day to day life. Looking in on the app as a HIV negative man, one would be able to see regular men living regular living with HIV. Initially this could be a platform for newly seroconverted men to meet a community which could support them. The aspect of serosorting ( the act of mixing HIV negative and HIV positive men or serodiscordancy) is where the app becomes complicated. While everyone would love to know beforehand if you or your partner has HIV, this is not the goal of this app. I am trying to promote conversation between both parties, not give one a tool to discriminate against the other. The major achievement would be a place where HIV negative guys can go to learn more about HIV and build friendships with positive guys. Currently no such app exists. The closest thing to such an app would be a dating app like Grindr, Scruf, Jack’d, Growler, Manhunt, and Daddyhunt. All of these apps give users the opportunity to disclose their status in varying ways. Some give you a section where you can select your status, or you can display it in your status. All of these are the same in that you have the option to disclose your status. Some guys display it proudly, some tuck it into their proiles, and others don’t disclose it at all. The problem is that there is no place for them to disclose their status to themselves or others without fear.
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HV i
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HIV SLANG TURNS INTO A SOLUTION
Hi 5, Hi 5, Hi! 5, Hi Five, High Five… HiV is inspired by the very discriminatory and high stigma behavior towards HIV, that I seek to change. It is a street slang used by younger gays to describe a guy who is positive or to talk about the virus in private. It is a colloquial term used in the South. I remember using it myself as an undergraduate.
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An example of its use would “he has Hi ive.” By using slang, I seek to bring more life into the title and change the meaning of HiV. HiV is an app designed for the gay community, because it is a niche market with not enough stuf. This is just a joke but an important commentary. HiV addresses a market with no other real viable alternative.
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How it works.
HiV is a geolocation based app that uses your smartphone’s internal GPS to connect users in a mentor-mentee program. HIV veterans or men who have been living with HIV for 10 or more years, are vetted by a survey of sliding scale questions approved by a psychologist. These veterans are then connected with recently diagnosed HIV positive men. These
individuals can then start a conversation about how to navigate this new time in their life. The pairing gives younger men support they need and older men closure and advocacy they might seek. Both further the conversation for others. HiV also provides links to health resources and events within the community all supported by GPS.
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Users are presented with a home feed of real daily glimpses in the lives of other men living with HIV. These stories change only when a user posts a new story in the form of text, video, audio, or pictures. Its kinda like snapchchat but with more meaning. Other users can then comment on these posts.
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The most important part of HiV is the mentor-mentee program that uses geolocation to connect HIV veterans with HIV pioneers in their area. This is designed to foster conversation and promote positive behavior.
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Participants can then start a conversation with their mentor or mentee once they have been paired with one another.
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HiV also connects users to events in the HIV community by organizations such as ASCNYC or Visual Aids and to more important resources such as well vetted HIV doctors.
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Beta steps. The app will launch in the fall of 2015 with the help of Manuel Toscanno the CEO of Zago, along with his myriad of contacts. HiV will be initially tested only in parts of the boroughs of Manhattan and Brooklyn. Primary neighborhoods that will be featured are those of The West Village, Chelsea, Hell’s Kitchen, The Lower East Side and West Harlem for Manhattan. For Brooklyn the neighborhoods of Park Slope, Dumbo, Williamsburg, and Bushwick will be initially ofered. Eventually the radius will spread to the greater New York Area. It is with hope that if the app receives funding and generates a following, it can launch on the west coast in San Francisco by winter 2016. Eventually this app will spread outside cities and ofer a larger network for men in rural communities and cities across the United States.
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The second goal of Hi! 5 is to provide an immediate community to newly diagnosed HIV positive men. According to the CDC, HIV infections in the MSM community for men ages 13-24 have increased by 12% and are still increasing since 2010. In 2010 the number of new HIV infection was 29,800. This equates to a large number of young men who statistically do not have the income, support, or stability of their late twenties and thirty-plus counterparts. Upon being diagnosed as HIV positive, members of this demographic could ind a community to support them and potential mentors. This would present this fast growing population of HIV positive men with a tool to put the brakes on this growing trend. The app could
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also be used as a tool for them to share their status with their friends in a way that might make it easier for them to understand. HIV is no longer a death sentence, but rather it is a chronic, manageable condition. By sharing their story with their friends they could potentially prevent new contractions as well as discrimination. HiV would also be designed to connect with an at-home testing device, whether it be the Dongle from Columbia University or the Oraest that I have developed. My app would provide the interface for the testing device while giving the opportunity to the user to disclose his status to the community after disclosing it to himself.
Goal number 2.
The second goal of my thesis is to create an at-home testing device that plugs into a smartphone, bringing athome testing to another level. Currently the only at-home testing device on the market is the Oraquick mouth swab kit. It does not use blood, or technology. This kit is also not reusable. While it is designed to be convenient, Oraquick removes some of the convenience by making it a one use kit. This requires the user to order or purchase a kit every time they need to get tested. In the stressful time of trying to igure out one’s status, waiting to get the device you will have to wait for the results from is not ideal. The goal of my
at-home testing device is to alleviate the stress and cost of purchasing a new kit each time the user wants a test. at-home testing is perfect for rural communities that often do not ofer rapid testing at the doctors oice or health department. While the blood test requiring 10 or more days for results has a lower window period, the wait can be stressful. There can also be stigma associated with such a visit in a small town. In small towns, word can get out of the conines of the oice about someone’s status. This could be devastating for the person who is diagnosed as positive, as well as detrimental to further education of others.
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My at-home testing device is a mouth swab test that plugs into the USB mini-port of a smart phone. Upon plugging in the smartphone the app would be activated to let the user know the longevity of the test. The app then alerts the user to the results of his test. The technology inside the testing device would have to use very low power and still contain a testing agent. A simple rubber push pump could eliminate the need for
an energy sucking electrical pump. The pump is needed to create a vacuum seal for the luids to mix in a clean environment for an accurate reading. Currently such technology is being tested by Columbia University. In February of 2015 Columbia University School of Engineering developed “dongle.� According to Science Translational Medicine:
This work demonstrates that a full laboratory-quality immunoassay can be run on a smartphone accessory. This low-cost dongle replicates all mechanical, optical, and electronic functions of a laboratory-based enzyme-linked immunosorbent assay (ELISA) without requiring any stored energy; all necessary power is drawn from a smartphone. Rwandan health care workers used the dongle to test whole blood obtained via inger prick from 96 patients enrolling into care at prevention of mother-to-child transmission clinics or voluntary counseling and testing centers. The dongle performed a triplexed immunoassay not currently available in a single test format: HIV antibody, treponemal-speciic antibody for syphilis, and nontreponemal antibody for active syphilis infection. In a blinded experiment, healthcare workers obtained diagnostic results in 15 min from our triplex test that rivaled the gold standard of laboratory-based HIV ELISA and rapid plasma reagin (a screening test for syphilis), with sensitivity of 92 to 100% and speciicity of 79 to 100%, consistent with needs of current clinical algorithms. Patient preference for the dongle was 97% compared to laboratory-based tests, with most pointing to the convenience of obtaining quick results with a single inger prick. This work suggests that coupling microluidics with recent advances in consumer electronics can make certain laboratory-based diagnostics accessible to almost any population with access to smartphones.
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Oraest
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This development represents a new goal for me. This goal is to work with the engineers at Columbia University to develop a more aesthetically pleasing version of this testing device. Currently this new testing device only costs $34 to manufacture. This is monumental in terms of accessibility; an afordable tester could help so many. In today’s day and age a smartphone is no longer a sign of wealth depending on the phone. Most people have them and use them everyday, especially in the third world and developing nations such as Kenya and South Africa. The “dongle� uses the headphone jack to power itself, unlike my at-home tester. A digital at-
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home tester is an opportunity to normalize testing and the conversation around it. It gives so many the opportunity to truly take control of their sexual health in a way that was previously not available. Knowing your status or being able to take a test with your partner in the comfort of your own home could signiicantly reduce the risk of spreading HIV. Another opportunity with my at-home testing device is to give individuals who use hookup apps and display their status, the ability to accurately display their status. Oraest could become a stamp of approval or a timestamp for at-home testing.
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THE OF
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HISTORY HIV. A FORMAL BREAKDOWN.
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1959: The Earliest Known Case
The irst case of HIV infection in a human was identiied in 1959. (The transfer of the HIV disease from animal to human likely occurred several decades earlier, however.) The infected individual lived in the Democratic Republic of the Congo. He did not know (and research could not identify) how he was infected.
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1981 HIV in the U.S.
The irst cases of HIV in the United States date back to 1981. Homosexual men began dying from mysterious, pneumonia-like infections. In June 1981, the U.S. Centers for Disease Control (CDC) irst described the symptoms of this unknown disease in one of their publications. Soon, healthcare providers from around the country began reporting similar cases. The number of people with the disease increased. Sadly, so did the number of people dying from the unidentiied disease.
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1982 First AIDS Clinic in America opens.
In September 1982, the CDC used the term “acquired immune deiciency syndrome� (AIDS) for the irst time when describing the mystery disease. That same year, the irst AIDS clinic opened in San Francisco which was being hit hardest, as San Francisco did, and still has, the largest population of gay men relative to population density.
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1984 A Little Discovery
In 1984, Dr. Robert Gallo and colleagues at the National Cancer Institute discovered what causes AIDS. Gallo found the human immunodeiciency virus (HIV), which is the virus responsible for HIV infections. The infection is distinct from AIDS, the full-blown syndrome that, along with the consequences of a damaged immune system (such as pneumonia and Kaposi’s sarcoma), is most often fatal.
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1985 Losing Famous Faces
America’s romantic leading man in the 1950s and ’60s, Rock Hudson, passed away from complications related to AIDS in 1985. When he passed, he willed $250,000 to help establish the American Foundation for AIDS Research (amfAR) with the help of Elizabeth Taylor. Today, amfAR helps fund research and education around the globe. Also this year, the U.S. Food and Drug Administration (FDA) approved the irst commercial blood test, ELISA. The ELISA test allowed hospitals and healthcare facilities to quickly screen blood for the disease.
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1994 A Tragic Milestone
Once the diseases were identiied, HIV and AIDS quickly became an epidemic in the country. By 1994, AIDS was the leading cause of death among Americans ages 25 to 44.
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1995 The cocktail come along
The FDA approved the irst protease inhibitor in 1995. This began a new era of strong treatment and response called “highly active antiretroviral therapy� (HAART). By 1997, HAART was the standard of treatment for HIV. Soon, the number of deaths caused by AIDS began to fall. This medicine plan nearly cut the number of AIDS-related deaths in half in just one year. However, HAART had its detractors. Many were worried the treatment plan was too aggressive and might actually make treatment-resistant HIV strains.
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2002: Home Testing
IAdvances in Home Testing The FDA approved the irst at-home HIV test kit in 2002. The test was 99.6 percent accurate. This opened up the possibility for people to test their status in the privacy of their own homes.
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Present.
Prevention Before Cure Advances in the science have allowed the FDA to recently approve a new use of the drug Truvada, which is used for HIV, to be used to prevent HIV. The treatment is known as “pre-exposure prophylaxis� (PrEP) and when taken regularly, it can be 96 to 100 percent efective in preventing HIV.
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HOW A GOOD BRAND CAN CHANGE EVERYTHING.
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The above is a quick history of HIV. What it does not mention is the emergence of radical AIDS activist groups like Aids Coalition to Unleash Power, ACT UP and People With Aids (PWA). These organizations were the real movers and doers of history.
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FOR THE FIRST 10 YEARS OF THE AIDS CRISIS
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THE UNITED STATES GOVERNMENT DID NOTHING.
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It was the end of 80’s, The government was giving out lethal doses of AZT, identiied not to be doing anything other than killing people. Design groups like Gran Fury paired with Act UP to use symbols like the pink triangle form the holocaust, over the words Silence = Death, to establish a brand logo. They had adopted the pink triangle from the holocaust patches that Nazis made homosexuals wear. They took a symbol of hatred and persecution and turned it into a symbol of deiance and resilience. These groups were forces to be reckoned with. They
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did not simply write letters. They took to the streets. They stormed hospitals and government buildings. These young gay men and women came together to educate themselves on potential medications, how these medications would work, and the treatment needed to be administered to their community. At the height of the epidemic, over 600,000 people died, mostly gay men. They forced the FDA to change the way they administered drug trials. They combined their voices, with their knowledge, with radical uses of design.
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ACT UP was an example of how the community could come together for a common goal to achieve. It was one of the irst times that all kinds of people came together for a common goal that afected the gay community. It was the largest form of gay activisms in United States history. ACT UP was efectively formed in March 1987 at the Lesbian and Gay Community Services Center in New York. Larry Kramer was asked to speak as part of a rotating speaker series, and his well-attended speech focused on action to ight AIDS. Kramer spoke out against the Gay Men’s Health Crisis (GMHC), which he perceived as politically impotent. At the time GMHC had condemned the actions of ACT UP and strived for a more peaceful docile behavior. They were quick to
side and accept the actions of the US and NYC government. Kramer had co-founded the GMHC but had resigned from its board of directors in 1983. According to Douglas Crimp, Kramer posed a question to the audience: “Do we want to start a new organization devoted to political action?” The answer was “a resounding yes.” Approximately 300 people met two days later to form ACT UP. ACT UP gained national attention, but in the end ACT UP began to dissolve from within. Larry Kramer was the irst igure to blow the whistle with his article “1,112” in the Native New Yorker that brought attention to the virus. He basically told people to stop fucking.
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LARRY KRAMER IN HIS OWN WO WAS AND WHY HE JOINED:
. ACT UP was started in 1987. There was no way that Gay Men’s Health Crisis was going to be at all political or a loud voice. It was very much a pastoral organization. All of the people who worked there were not political people; they were caregivers. It was like a church organization really. These were not people who would go out there and protest and make noise, and I got very angry at them for that. ... Rather than try to keep forcing them to do that, it occurred to me that we should have another organization to do that. I spread the word that I was going to make a speech at the community center, and an awful lot of people showed up, I’m happy to say. I made a speech saying something to the efect of that I had just happened [to see] that 10,000 Catholics had just marched on Albany to get something and got a lot of press, and I said, “You know, if 10,000 Catholics can do it, 10,000 gays can certainly do it.” There were a lot of sick people by then -- a lot -- and if they weren’t sick, there were a lot of terriied people who were quite rightly afraid they were going to get sick, and a lot of them did. The organization was a success from opening night. By sheer coincidence, I had written an op-ed piece that The New York
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Times had accepted called “The FDA’s Callous Response to AIDS,” which they literally ran the next day. We arranged a protest outside of the stock exchange on the very day that this op-ed piece appeared. We were protesting the fact that Burroughs Wellcome had raised the price of AZT yet again, the drug they didn’t own and had no money in. [AIDS activist] Peter Staley managed to get for the irst time in history a group inside the Stock Exchange. They were all dressed like brokers, and once they got in they scattered the place with lyers everywhere which said, “Sell Wellcome,” which means “Sell Burroughs Wellcome stock.” Joe Papp, my great producer at the public theater, had his shop make an eigy of Frank Young, who was head of the FDA, and we hung him in eigy from gallows that we erected outside of the stock market. We passed out copies of The New York Times op-ed piece. It couldn’t have been better timed. ... We got on Peter Jennings’ [World News Tonight]. We were noticed. And ACT UP was born and went from strength to strength - Larry Kramer
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Thanks to the work of ACT UP a new series of drugs emerged in the late nineties, and the deaths immediately stopped. Some say it was like “someone lipped a switch.” Within as little as 30 days, those who could get the improved drugs immediately started to improve. This instilled a new lease of life for these people. But with the new drugs and end to activism HIV fell out of the media spotlight in America, especially for gay men. Another positive thing to come from the drugs was the emergence of a new term: “undetectable.” This new term meant that T cell counts were so low that the virus could not be detected in a blood sample. This allows for HIV negative and HIV positive men to be in healthy relationships.
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It was not until the 2000’s that a undetectable appeared for the irst time on the revolutionary television series Queer as Folk. Groundbreaking scenes abounded in Queer as Folk, beginning with the irst episode, containing the irst simulated sex scene between two men shown on American television. Despite the frank portrayals of drug use and casual sex in the gay club scene, the expected conservative uproar never occurred. The irst controversial HIV subject that was tackled in the series was bug chasing. Bug chasing is the act of HIV negative men actively seeking HIV positive men to seroconvert with. This idea stems often from self-loathing and self-stigma. The other is the thought they are inevitably going to get HIV, and so they want to get it over with. Lastly people seek it out as an erotic challenge. It was in the second season and onwards throughout the rest of the show that a serodiscordant relationship was featured. This was the irst public acknowledgement of a serodiscordant relationship. I remember the irst time I encountered my irst serodiscordant relationship. I went back to those episodes to look at what they were doing.
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Recently serodiscordant relationships was brought back into mainstream society in the HBO series Looking. HIV was not mentioned in the irst season just like in Queer as Folk. In the irst episode, slang is used to describe the status of another character. “He has a House In Virginia� referring to his HIV status. This character and another have a relationship and they bring up the use of PrEP.
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I BEGAN WITH A SUCCESSFUL FAILURE.
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“Greece is an example of perhaps the worst case of austerity leading to public health disasters, new HIV infections have jumped more than 200 percent,� -Dr. David Stuckler co-author of The Body Economic.
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The real deinition of austerity states of reduced spending and increased frugality in the inancial sector. Austerity measures generally refer to the measures taken by governments to reduce expenditures in an attempt to shrink their growing budget deicits. Austerity measures are generally unpopular because they tend to lower the quantity and quality of services and beneits provided by the government. Beginning in 2009, several nations were forced to embark on unprecedented austerity measures. These measures were necessitated by budget deicits that soared to record levels because of actions these countries took to stimulate their economies following the massive credit crisis and global recession of 2008. What does this mean for people who have experienced austerity measures? Smaller programs are often canceled. This can be in the form of small things like after school programs, free services, and outreach program. Other things to be cut are often medication programs and health outreach services. While the efects are not seen in the moment, the long term efects are staggering. OECD’s Ankit Kumar explains it best.
“The thing about healthcare systems is you cut the money today, and start to see the cuts’ impact at least three to four years from now. You know that people aren’t getting their medications. But it takes a couple of years before this manifests itself in high levels of sickness, fewer people being able to work, and more people facing shorter lives. Given the consequences of what has happened in Greece, these outcomes are just going to get worse and worse.” Needle exchanges are the programs that are often the irst to go. They also stand to serve the most from a design intervention. These programs are often underfunded and sufer from severe backlash from the communities they operate in. Populations rejecting needle exchanges are the ones hit hardest hit by the problems of intravenous drug use.
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The irst semblance of a needle exchange emerged in the late 1970s. The original needle exchanges were designed to combat the spread of Hepatitis B and the yellow jaundice and abscesses from shooting up. These initial programs had no governance and were simply people taking measures to take care of a population that they saw to be at risk. During this time, syringes required prescriptions, so the actions of these people were direct acts of deiance. It was not until the early 80’s that these programs began to take more shape to combat HIV. Patricia Case, an early organizer of the San Francisco needle exchange remembers doctors and nurses leaving ten packs of syringes in view of people they know to be injecting drugs, and then walk away. The irst organized needle exchange to be supported by a government organization was in Amsterdam in 1984. They operated under the approach that drug users fail to abstain totally, and tried reduce the risk that injectors pose to themselves and others. The second aspect of their preventative care was to make it easily accessible and anonymous. Their approach was a model that was quickly adopted in North America. During the late 80’s, 50%-60% of New York’s injection community was already infected with HIV. In 1988 the irst community supported needle exchange was organized in Tacoma, Washington by Dave Purchase. This was after a Dr. Jon Parker’s very public distribution and advocacy of clean needles. Parker was once quoted as saying:
“someday it may be of people are dyin stupid law,’’ 106
in response to being warned of the illegality of distributing needles. At the present time, Australia, Brazil, Canada, the Czech Republic, Netherlands, New Zealand, Norway, Portugal, Spain, Switzerland, United Kingdom, Ireland, Iran and the United States (which does not allow federal funding) all have needle exchange programs. Of these countries listed, Canada is the most progressive, with Vancouver ofering the most outreach. Currently needle exchange programs, though in existence in many places across America, do not receive federal funding in the country. They are also currently loosely deemed illegal. Small amounts of funding from the government, on a state and local level, are given to these programs as well as private funding that they raise on their own. Many of these programs do more than just exchange needles. These centers also ofer community outreach services, wellness programs, educational programs, nutrition services, and in the case of Portland Hotel Service in Vancouver, nurse supervised injection services. Sometimes such programs are also a facet of shelters where participants are able to sleep, receive food, and shower. For the most part, they are self-governing and designed around anonymity with a low threshold for entry.
e legal but a lot ng because of a 107
One such organization here NYC is the Lower East Side Harm Reduction Center (LESHRC). This is what I based many of my insights and research on, as I volunteered and prototyped throughout the year. At the LESHRC, addicts are referred to as “Participants� and are part of the learning and healing process. LESHRC does not just deal with injection drug users; their list of participants ranges from steroid users to transexuals injecting hormones to a varying degree of people addicted to drugs. The LESHRC also does outreach work with populations that are at risk, such as sex workers and MSM in the underground bareback sex party community. The design that got me in the door at LESHRC was my needle exchange kiosk that I mentioned earlier. Upon the request of a friend, I reached out to the LESHRC and arranged a meeting with Sadat Iqbal. At the time, Sadat was the director of the needle exchange and outreach. He showed me around the center and then immediately began to inspect my design for a needle exchange. By this point, I had already presented the concept to my peers and many of my professors in the forms of both digital renderings and a series of screens for the user experience. He was keen on the idea, but then he invited Ajani Benjamin to join the conversation. Ajani recollected the time a student from Syracuse University presented a similar idea and how he had been hard to contact and unreliable. He was helpful in pointing out the success of my speculative design, but he was quick to state
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“a big part of what we do is the human interaction. A kiosk would not do that... sometimes that’s the main reason that people come here. What would they do if they didn’t have that?”
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Branded Logo I took this as my irst introduction to a successful failure. A needle exchange in the form of a kiosk would never work in NYC. There is more need for physical space here, and people come to the needle exchange to seek shelter, human interaction, and advice from a person. They were quick to inform me, though, that this would be the perfect tool for rural communities, and that it was not a failure. It would be great for these communities sufering from the stigmas related to HIV and drug use. Participants would be able to access clean needles in anonymity, without Inquisitive having to go to a pharmacy or store Communication where the store owner might know them. Screen
Coca Car
WHAT DO Y Multiple Dispensers
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Cola res
Easy to use Touch Screen
The harm reduction center also does not have the resources needed to prototype such a machine. They would need to be able to hire user experience designers, graphic designers, and engineers. Also the policy requirements in the city for such a device would be daunting. Moving forward, we agreed while this was a very important device, it might not be the right device for an urban setting like NYC. It was not until March of the second semester that I had the opportunity to represent this project, but this time to the Center For Disease Control. They are located in Georgia and are aware of the numerous amounts of rural communities within US with large Key the Pad ID problems. Moving forward, Card Slotthey are interested in having me present this to a larger team in Atlanta to see where it can go developmentally.
YOU NEED?
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a breakdown
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My thesis is directed at two diferent audiences: the MSM (Men who have sex with men) community my irst audience, which can be broken down into HIV positive men and HIV negative men; the secondary audience is the rest of society (non MSM) because of the need for more education regarding HIV to prevent stigma, discrimination, and most importantly contraction. The market I am most concerned with addressing through my thesis is Health Tech through consumer markets consisting of social media and wearables. It is my background in the fashion industry that has inspired me to pursue wearables and potentially the fragrance industry. Social media will be the main area of my research, with app design focusing on at-home testing and connectivity. The MSM community is my direct audience, and can be broken down into groups HIV positive and
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HIV negative. I choose to use the word MSM when describing the community rather than gay, because not everyone who has sex with men self identiies as gay. These men are at extreme risk for contracting HIV because there is often little conversation about sexuality and next to none about status. The reasons for not identifying as gay can be that they are bisexual, transgender, ashamed/ closeted, or as in some patriarchal societies they are not identiied as gay so long as they never receive anal intercourse. Giving or being the “top� in these cultures is seen as hyper masculine, because the man is forcing his sex upon a less dominant man. In the case of bisexual and transgender, sexuality is often talked about, but in the other cases of MSM behavior sexuality is not talked about, making it diicult for a conversation about status to arise as well.
The other group making up the MSM community is gay men, who do discuss their sexuality but who still have trouble discussing their status because of fear of stigma and discrimination. This fear and shame leads to many men believing myths such as “I’m a top. I won’t get HIV.” or “I don’t know anyone who is HIV-positive” and my personal favorite “I don’t have sex with people who are HIV-positive.” These myths perpetuate the lack of conversation and the negative attitude towards HIV. In this subgroup of MSM, I am focusing much of my thesis on the interactions between HIV negative and HIV positive men. Currently, many HIV positive men experience discrimination from men who are not HIV positive and do not see them as human beings. Many HIV positive men are afraid to be upfront about their status because of the fear of rejection from a potential partner. Younger gay men are less likely to date an
HIV positive man and are more likely to have a reaction that can often be dramatic and hurtful due to a lack of information. It has been proven that a man who is HIV positive with an undetectable viral load is 96 percent less likely to transmit the virus than someone who is newly infected and does not know their status. It is this fear that causes some men to not tell their partner until later that they are positive, or for some HIV negative men to not get tested because of the fear of knowing their own status. It is within this group that I am most interested in creating ways to make disclosure easier for both parties. It is half disclosure, half receiving. One party has to be willing to talk while the other has to be willing to listen and accept the information that is being presented.
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The gay community is actually fractured rather than joined. The last two times the community came together were for gay rights in the 1970’s and during the AIDS crisis in the 80s when lesbians also joined in the ight for awareness. Since then the community has become disjointed and the conversation on HIV/ AIDS has fallen lat. Currently the gay community is split into a myriad of micro communities that range from ethnicity, to socioeconomic class, to how hairy or skinny you are. There are multiple apps for gay “hook-ups� currently on the market. These actually best illustrate the division amongst the community. The irst app to come on the market was the app Grindr which quickly became the go to app for it white gay males and white headless torsos. From this community of exclusivity emerged Scruf which was designed for the fringe community of hairy men who did not it the supericial ideal of it and hairless. While this may seem like the problem
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was simply divided into two apps, it was not. Scruf, while it is a safe place for guys without the traditional body type has also become a primarily white app. This app also has such discriminations based on the lack of hair you have on your body. From this app has emerged three other apps, Growler for the very big men, Jacked which was quickly adopted by Latino and Asian men, and Hornet which is popular among the African American community. While some men choose to bridge the gap, this is only representative a few men within much larger populations.These divisions fuel the lack of conversation around HIV. It is important to create platforms, spaces, and events that support uniication of the community amongst the diferent groups that make up the gay community here in the United States. The secondary audience for my thesis is the non-MSM community or the rest of society. This is made up
of women, lesbians, and straight males who are not having sex with men. This needs to be made clear, because there are still many grey areas. This audience may seem like it is not important, but that is not true. It is vital that the nonMSM community is aware of what is going on in the MSM community regarding HIV. This is the community that has, currently is, and will, raise members of the MSM community. The more they know and the less they fear, the easier it will be for future generations to talk about HIV There is still much fear, ignorance, and general lack of knowledge about HIV. Most non-MSM people in America do not know someone with HIV, unless it is a family member or friend, which is less common in rural America. This lack of education about HIV should not be so rare since women are the next population most at risk for contracting HIV. Especially in the African American community where women often are at risk of
contracting HIV from their partner because of a lack of disclosure or conversation about sex. Thankfully to mainstream media, whether they approve or not, people know more about the MSM community than they ever did before. Unfortunately, some of the portrayals are still inaccurate or stereotypical. The next step for this community is to get them to talk more comfortably about what goes on in the MSM community. How do you get parents to talk more openly about HIV to their child whether or not the child has found his sexual identity? How to get parents to tell their child it is ok to date someone who is HIV and undetectable? These are conversations that are currently not happening either because of a lack of knowledge or because of fear. Once these conversations begin to happen, a new generation of MSM males will be able to approach their sex life without fear and with the tools they need to make accurate decisions.
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At the moment, the conversation between the two communities has revolved around gay marriage as well as other social liberties. This has switched the conversation away from the HIV, which was the major topic of the late 1980’s. The conversation on HIV has almost stopped with organizations like the Human Rights Campaign barely mentioning it in their annual reports. This has also caused the urgency to ind a cure to slow, with pharmaceutical companies coming in and taking hold of the emergent market that is chronic HIV treatment. This market consists of HIV control and HIV prevention, with both relying on once a day pills that are meant to be taken for the rest of the user’s life. This has slowed the conversation and removed the serious fear of HIV
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because it is now seen as a livable condition. All this must change to prevent the reemergence of HIV as an epidemic. The main market I seek to address with this thesis is the Health-Tech market. It is a growing ield, with more and more companies attempting to use technology to tackle the ever growing problems within the crippled American healthcare system. The area of the healthcare system I plan to impact is preventative healthcare with a focus on HIV in the form of an app with a greater community for HIV positive men. The second market is based on my past work in the fashion industry. Health tech is an emergent market that has sprung up after the further privatization of healthcare
and the increased craze of monitoring one’s vitals as a form of preventative care. Since the introduction of digital at-home thermometers and blood glucose testers with the massive rise of diabetes in America, it has become one of the fastest growing markets generating billions of dollars every year. New to this market of at-home monitors and testers are wearables that monitor your vitals when you are sleeping, awake, and at the gym. They let you know how many steps you’ve taken, how restless your sleep has become, and how many calories you’ve consumed in a day. People have become obsessed with knowing these stats about themselves and collecting data on their daily habits to create a better self.
drug that has been on the market for years has been re-marketed as prevention tool against HIV. Truvada for PrEP can be taken once a day to prevent HIV. PrEP is an antiretroviral. Antiretrovirals are used by HIV positive men to stop the virus from replicating, to lowering the possibility of transmission to 4%, and to lower the viral load to undetectable. PrEP is potentially a great tool for removing stigma between HIV negative and HIV positive men. It creates a culture of men who refer to themselves as HIV neutral, meaning they do not discriminate. This is both a great and negative stop in the ight against HIV. Some men, though, would rather not take a pill everyday to keep themselves negative.
In the ight against HIV, a
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“According to the CDC, if HIV continues to spread at its current rates, more than half of college-aged gay men will have HIV by the age of 50.” Every month, 1,000 young Americans become infected with HIV. Young people aged 13 to 24 made up about 26 percent of all new diagnoses in 2010, even as other demographics have remained relatively stable, according to new information from the Centers for Disease Control and Prevention. It is these stats that have become a driving force in my thesis. There is an alarming increase in new cases of HIV in younger generations. Young black men are more likely to be afected by HIV, so for them, this a much bigger issue. In the beginning of the HIV crisis, the majority of men becoming infected were white males, and
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then the virus spread to marginalized groups. These socioeconomically deprived groups were less able to deal with the disease. This has resulted in a consistent amount of infections with a recent increase. According to the Kaiser Family Foundation: “One in two (49%) Black youth say they are personally “very concerned” about HIV/AIDS today, and another 21 percent say they are at least “somewhat concerned” about their own risk. This is more than twice the rate of concern expressed by whites, with only a third of white youth expressing any personal concern (17% “very” and 18% “somewhat”). Latinos of the same age fall in the middle with 32 percent saying they are “very concerned” personally, and another 16 percent saying “somewhat concerned.” These diferences in outlook by race also extend
to broader concerns expressed by young people about HIV/AIDS as an issue for their generation. Young people of color – those from communities that have been disproportionately afected by the disease – are more likely to see HIV/ AIDS as a signiicant issue for people their age. Twice as many Black (62%) and Latino youth (61%) say HIV/ AIDS is “very serious issue for their generation, as compared with whites of the same age (32%).” This lack of association with HIV in the white male community has created an opportunity for apathy to arise in regards to the virus. Men feel that because they are of a certain ethnicity and socioeconomic background they are less likely to come in contact with the virus so they are more likely to take part in risky behavior. Whereas black males are more personally associated with
the disease knowing friends and family members who have died. This is coupled with the ever growing racial divide in this country. HIV is an opportunistic virus. It simply needs a host. Because there is little conversation between the communities, there is little conversation about the virus. In the beginning of the HIV crisis both groups were not accepted in society, a unifying factor among them. It did not matter if you were it, hairy, hot, not, white, or black, you were probably going to get the virus or your were watching your friends pass away. Now thanks to modern medicine HIV has become a treatable chronic illnesses that people do not die of. It is rare that someone in the United States is dying of AIDS.
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“A very strange thing has happened in the post-AIDS generation. I don’t know what to call them; it’s not really post-AIDS, but let’s call them the healthier, younger ones. They don’t want to know. They don’t want to know the old people; they don’t want to know the history; they don’t want to acknowledge that the people who died were even part of their history. I talk about this a lot. How can you dare to ignore everything that happened? These people died so that you could live. Those drugs are out there because people died for them. [It’s] shocking what’s going on now in the gay population. I have lost a great deal of pride in being gay. ...I don’t think people are as frightened of getting infected now because all these medicines are out there, so if by chance they get drugged up and their guards are down that night and they don’t use a condom, they’re prepared to take that chance occasionally. That’s just so dumb.” -Larry Kramer
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Currently, there are only seven companies making effective
and currently the number of people who die every year because they cannot afford HIV medications is 2,000,000. That is
protease inhibitors,
5,500 people every day or 4 people
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PrE Its like birth c
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EP ontrol, for HIV
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PrEP is an investigational approach to HIV prevention in which antiretroviral medicines currently approved to treat HIV infection are given to people who are not infected with HIV in an attempt to reduce their risk of infection. The concept behind PrEP is not a new one. Drugs are taken to prevent malaria during periods of increased risk and can also be used to reduce the risk of developing tuberculosis and certain types of meningitis. With HIV, scientists theorize that taking an antiretroviral drug before exposure to HIV could potentially inhibit HIV replication immediately after exposure to the virus, thereby preventing the establishment of permanent infection. There is scientiic evidence to support this theory in animal models and humans. Antiretroviral drugs have been successfully used to prevent HIV transmission
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from infected mothers to their newborns. PrEP and Post Exposure Prophylaxis (PEP) are two diferent forms of emtricitabine and tenofovir, known under the brand name Truvada, a drug produced by Gilead Pharmaceuticals. A study labeled iPREX began in June of 2007 to see the efectiveness of PreExposure Prophylaxis on the MSM community and transgender male to female women who have sex with men. The MSM community is still the community most disproportionately afected by HIV infections. The study was conducted on 2,499 sexually active MSM members that were HIV-negative, 18 years or older, born male, and at risk. The study was conducted under Robert M. Grant, M.D., M.P.H. of the Gladstone Institute of Virology and Immunology. The study was a doubleblind, randomized, and placebo-controlled Phase
III trial. The goal of the study was to see if the daily combination antiretroviral pill could prevent HIV infection among sexually active men who have sex with men along with the routine counseling of safe sex practices, and proper condom usage. The average enrollment was 1.2 years with a monthly HIV infection test and evaluation. The results showed that participants who took the antiretrovirals experienced an average of 43.8% fewer HIV infections. While this number may not appear great, it is the result of a scale of participants taking and not regularly taking their medication. Those who were more adherent to the daily drug regimen experienced 72.8% fewer infections when they took the drug 90% or more days. It was this study that allowed for the drug to be approved by the CDC and then fast-tracked to be administered by health
professionals. There are however many opponents to the new drug who fear that it may cause complacency and an increase in risky behavior. It has also been ridiculed for its extreme cost of $13,000 a year. While it has been approved for Medicaid and most major providers, it is still inaccessible to the people who are not currently in the healthcare system. Gilead the company that produces Truvada has a program where they will pay for the drug for people who cannot aford it or whose health care provider does not cover it. PrEP is still not being recommended in the EU as research has not provided signiicant enough evidence that PrEP prevents HIV infections. Still PrEP serves as a great tool to potentially save countless lives of people at risk for contracting HIV. It also serves as a great means of entry to the healthcare system for many.
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My
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Journey
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Disclosional is a rigorous thesis exploration into how disclosure can prevent HIV. During this journey I have conducted research that has taken me from the efects of economic austerity on the body to the importance of needle exchanges and has then narrowed down into how to prevent HIV. In my process I read books, medical journals, blogs, and news articles, while talking to 30 subject matter experts, meeting with several HIV positive men regularly and talking remotely with others. Prototyping was done alongside volunteering. My thesis began with a summer of reading about the negative efects of austerity on the human body and the increased rates of HIV in countries where it has been applied. This increase in HIV comes from the cuts to social safety nets that provide funding to outreach programs such as needle exchanges, condom
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initiatives, free clinics, and STI/ HIV awareness campaigns. The ideology around the removal of such programs is that they are small and a waste of money. While the immediate expenditure of the program is small the long term costs are vast. When these programs are cut, a severe rise in preventable disease can be seen. For example in Greece, there was a 200% increase in HIV since 2008. HIV spiked because government needle exchange programs ran out of clean syringes for heroin addicts. The average Greek user requires 200 clean needles in a given year. With the current budget they are aforded three clean needles. With the shortage of needles, these users are forced to reuse their needles. That is where disease begins to spread. It was this clear failure in human intervention that caused me to begin to explore what exactly a needle exchange is and how it might beneit from a design intervention.
The irst step was to truly understand what a needle exchange was and how it it into the greater community of harm reduction. Needle exchanges are the programs that stand to serve the most from a design intervention. These programs are often underfunded and sufer from severe backlash from the communities they operate in. Populations that often reject needle exchanges are the ones hit hardest by the problems of intravenous drug use. Harm reduction is the overarching methodology needle exchanges fall into. Needle exchanges began to informally pop up in the mid 70’s and began to become legal in the 80’s and 90’s. It is proven they greatly lower the transmission of communicable diseases. The second process in my research was to analyze what could be designed to replace the needle exchanges being shut down and would at the same time
cost less after the initial investment. My solution was to design an automated needle exchange, like an automated teller kiosk. I irst formulated the idea during the summer after inishing The Body Economic. It was not until I was prompted to draw one hundred ideations that I began to truly explore the kiosk and how it might work. This was a great exercise that prompted me to come up with speculative design from the research I had started during the summer. Still being new to the topic allowed for me to design objects without biases or fear of failure. Not knowing the full availability of technologies forced me to speculate and create new ones. The speculative drawing of a kiosk prompted me to further research what had been done in the way of dispensing medical aid.
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I began my physical research by designing the shell of the kiosk, based on the drawings I had created, which was pretty simple. I looked at the design of ATM’s and how soda machines in recent years had over gone a complete user experience overhaul. This research caused me to stop looking at the design of kiosk itself and turn my attention to the user interface. It was in a conversation with Allan Chochinov the chair of my department, where he said, “You have to design the screen, before you can design the machine.” From there I began wireframing the screen of two diferent kiosks, with the same function. The irst screen was based on the screen design of the Coca Cola touch screen soda dispenser. The second screen was a conceptual realization of what it might
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look like if Wells Fargo entered the public health sector. It was branded with their logos and appeared the same as their ATM touch screen. I then took the screens and used the digital prototyping tool Popapp, to give the screens limited functionality. Popapp or Prototyping On Paper, is an app designed to help people physicalize an app without fully developed screens. This was perfect for me at the time because prior to this I had never designed a UI or UX in my graduate career. I chose to speculatively brand the kiosk with Wells Fargo, after researching how many large companies have health initiatives. One such company is Coca Cola, who distributes AZT, an early HIV drug once used in harmful doses in the United States, to third world countries.
Coca Cola Cares
WHAT DO YOU NEED?
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It was during this time that I had my irst interview with the staf at the Lower East Side Harm Reduction Center as I mentioned earlier. I took my designs with me and tested them on the staf while I was there. The staf suggested I begin volunteering at the LESHRC, so I could get a better understanding of how a needle exchange actually worked and the needs of people who participated. I say participated because that is the term used at the center to remove the stigma society often casts on drug addicts. I accepted the ofer and began volunteering every Monday
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at the end of October. By volunteering at the LESHRC I was able to observe how participants used the services and contributed to the center. It was clear human interaction was the part that kept the center running. It was also from this research and volunteering that I learned that my design would not work well in a city, but it could work well in a rural community that sufered from the stigma and gossip of a small town. I tested the screens that I had designed with participants. They found the design
simple to use, but they also brought up the lack of human interaction. One woman who I will call Jane, interacted with the screen and then began to talk to me more about what she got from the center. She said it was the only place that people did not judge her. She had come from the fashion industry where she had been a model and had been introduced to drugs. While she would have been able to get everything out of my machine she needed physically, she would not get the emotional support she needed from it. I found that people are more likely to be honest with a
screen. With a screen there is an understanding and assumption that there will be no judgement. These assumptions are what make ATMS so easy and apps like Secret, the app where people can share their secrets anonymously, so liked. I was also able to gain insights from people who had worked in harm reduction, and who had seen drastic changes in harm reduction, who had met igures like Keith Haring, and who had seen the horrors of the AIDS crisis over the years.
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I moved away from the tech after this irst break through, and I turned my attention to the outward facing material of the center. The brochures handed out were lengthy and in English, but they are located in a Chinese neighborhood and serve a large population of Latinos. I consolidated the information in the packets into small kits for safer smoking, snorting, sex, and shooting up. The previous packets were limited to a plastic bag that housed a wordy instructional pamphlet. My new design used the paper of the pamphlet to house the tools found in the kits, while using the negative space for the information. I translated this information into simple to understand graphics that could be understood no matter the language the participants speaks.
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While at the needle exchange I began to learn more about PrEP and the debate in the gay community around it. I began to focus more and more on this drug and how it is afecting the MSM community. This was the start of my narrowing in on my topic. I like to think of this time as my “in-ield research.� It was a great opportunity because I was literally able to prototype with feedback in real time from people who needed the products I was designing. It was also a great time for me to learn as an outsider what their day to day life was like and better develop a sense of empathy towards
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them. At the same time I was interviewing public health experts. My public health experts ranged from doctors, to outreach specialists, to public oicials. As I began to amass more subject matter experts, I began to narrow my topic. As my thesis defense approached, I began to drastically narrow my topic down to preventing HIV and alternatives to the new controversial drug PrEP. One of my interviewees was an HIV positive friend named Nico who expressed the need for people to be able to discuss and disclose their status without the fear of stigma. His need would come to be a guiding force in my work. He said:
“Give me a platform where I can disclose my status freely, without fear of shame or stigma.”
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It was during this time that I began talking with medical experts in NYC. I spent three weeks trying to contact Dr. Demetre Daskalakis who is currently the Assistant Commissioner of Health and Mental Hygiene. He is famous for stopping the spread of meningitis in NYC during the summer of 2012, during an outbreak in the MSM community. He went into gay clubs and sex clubs and administered HIV testing and meningitis vaccinations. It was this hands-on grassroots work that helped to stop the spread of meningitis in NYC. Demetre is also instrumental in getting PrEP fast tracked by the US government, speciically in New York State. Demetre
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was informative to talk to. He told me he had always wanted to be a doctor and that it was when he was in graduate school and saw the AIDS quilt that he knew he wanted to dedicate his work to HIV AIDS. Until recently he was working at Mount Sinai and was in charge of HIV/ AIDS outreach. He informed me that while he admits PrEP is not the best option, it is something to protect people. He was also quick to state that currently we are only at 3rd generation testing, and that it needs to become 4th generation. The technology is there but the overall acceptance and adoption of such tools has not become mainstream.
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When I inally narrowed down and committed to exploring disclosure as a tool for prevention of HIV, I stopped hiding in my thesis. For the majority of the irst semester I was hiding my own fears, stigma, and sexuality in my thesis. I was afraid to admit my thesis was designed by a gay man for gay men. I was and still am afraid of outing myself or pigeon-holing myself. At times it has clouded my research or caused me to create objects I can hide behind. It is something I am still personally working through via my thesis.
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BY HEATH WAGONER
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5:30 PM TO 8:30 PM
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Thought
After looking at how my daily ritual of applying fragrance could relate to my thesis in the form of an experience, I decided to see how fragrance can be used in disclosure. Fragrance is a powerful tool. It can make people seem more desirable and worthy of pursuit. It helps to formulate initial opinions of people and creates desire. Wearing fragrance is a commitment and could give someone who is HIV positive the opportunity to disclose his status to a potential partner through fragrance. By giving his fragrance to a potential partner after disclosing his status, he can give the partner the opportunity to decide if he wants to commit to him. On the other hand, it gives the other partner the chance to wear the guy’s fragrance to decide if he wants to commit. Fragrance gives the wearer the opportunity manifest the thought and embodiment of his potential partner while committing only for a small time. This is a way to take my thesis into a more experiential realm and potentially appeal to wider audience within a diferent market which is not currently
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Process
talking about HIV. This was the initial phase in designing an experience. This small object also aforded me the opportunity to understand how a user interacts, or in some cases, avoids an experience. I turned to sound and the true meaning of my thesis to design an experience. The question at hand was how might we get someone who isn’t connected to HIV to interact with conversations about HIV. The current problem with HIV is that not enough people are connected to to it and talking about it. It is this lack of connection that fuels apathy. HIV is a virus that thrives in silence. This was the reason behind the highly efective “Silence = Death” campaign of ACT UP in the 80’s. If we don’t talk about something it just gets worse. It doesn’t go away. In order to get people to to interact with HIV, I had to somehow get the stories of those were HIV positive and present them in a public way, while not objectifying them.
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Ideation I began to design for both the people that would be sharing their stories along with the people that would be experiencing them. Initially, I wanted these stories to be played through directional speakers allowing participants to walk into the disclosure. I envisioned an empty white room with speakers that people would be required to silently wander through. Participants would get ten minutes in the room. Weather and the cost of the speakers (they can cost up to $2000 each) eventually caused me to redesign this event to use phone receivers on portals. This allowed the participants to stay in the space as long as they pleased.
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Partnership For this project, after weeks of Ideation, I was put in touch with Visual Aids. Visual Aids is the largest organization for HIV positive artists. They worked to create the HIV Red ribbon that is synonymous with HIV awareness. At the beginning of this class, I was working as a technical designer for a startup jewelry company. I wasn’t
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fond of the job and would later end up quitting. While working there, I got the opportunity to meet the president of Visual Aids, Brice Brown who was doing work with the owners of the studio I was renting space from for the startup. They were aware of the work I was doing from passing conversations and seeing me stressed out. One day I was working on a project and the owner
Brian came over to me and told me “Heath, it’s time to talk to people, come with me.” Brice was quite interested in hearing about my work and immediately connected me with Nelson Santos and Alex Fiahlo who had me in the next week for an interview about the work that I am doing. In the interview they gave me a plethora of printed matter about HIV in art and talked with me about the projects
I am working on. A couple weeks after that, I came to them with Disclosional and asked Visual Aids to put me in touch with multiple HIV positive men. Alex helped me to craft an email that would sincerely ask men to share the story of the day they found out they were HIV positive. This was a thought-oriented process that required much attention to detail to craft such a request.
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How are you? My name is Heath Wagoner, I am currently a Masters Student at School of Visual Arts. I am working on a design experience called Disclosional. Visual Aids provided me with your contact information because of your unique story, and I am sincerely hoping you will be willing to participate in the project. Disclosional is an experience open to the public that brings attention to disclosure of HIV. Attendees have the opportunity to listen to someone that is HIV Positive recount the events of the day they found out they were positive via anonymous audio recordings that will be played during the experience. Disclosional is part of a body of work about fostering a community for HIV positive men where disclosure becomes easier and stigma is eliminated. Disclosional seeks to create an environment where people who may or may not be immediately connected to HIV have the opportunity to enter that world and walk away with the insights to start new conversations about HIV. People will gain these insights from the stories of HIV positive men. I think that conversation is key in understand HIV. If interested, I ask that you please record the array of emotions and events over the course of the day that you found out you were HIV positive, in the manner most comfortable for you / as best you can. This recording can be a recollection or spoken in way of a conversation. We hope that through the process of your disclosing these personal responses, Disclosional will open a sensitive space for dialogue about the challenges faced and contributions made by individuals living with HIV. You may use your computer or photo to record yourself. Your name will also be withheld if you request. Ideally, the recorded response will be 3-6 minutes. If willing and able, please provide the recording response by this coming Saturday. I’m happy to answer any questions you may have about the project. I thank you for your participation and I will be sure to inform you in the coming weeks of the event’s time and location. Thank you for your time.
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Out of those 20 men only four replied with their stories. I did receive one more reply from a man named Carlos, his email did not include his story. Rather it included his struggle and insights into why he thought that my event might be harmful rather than helpful. His reply was this heartfelt email: Dear Mr. Wagoner, Thank you for your invitation to participate on such short notice in your Master’s Thesis project. Although without a doubt “Disclosional” is well intended, and dialogue about HIV is good, at this time I respectfully decline your invitation. In my opinion, only focusing on the events/thoughts/feelings one experienced on the day when one learns she/he is HIV positive is an overly simplistic approach to the issue. In efect, it reduces such a life-altering event to a single set of neatly organized reactions which ignores the enormous anxiety leading up to the “test,” as well as the profound sense of dread, anger, and inevitable fatalism that follows, and stays with you for the rest of your life. Sir, after a great deal of soul-searching and introspective thought I got tested, and diagnosed HIV +, in 1989. At the time, as you may know, an HIV + diagnosis was, in fact, a death sentence. I was one of the lucky ones to survive to this day, but that verdict came with a price. For over two decades I have been functioning on automatic pilot. And I tell you from personal experience that surviving is not living. It is only recently that I have begun the slow process of embracing life anew. Good luck with your project, and do let me know the date and location of the event.
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Execution I took the stories of the four men that responded, recorded them and then built a portal to house these disclosures. They were played on a looped track on two old iPhone 3s. Both portals had phone receivers that participants could listen on and review the recordings. While they were listening they could watch a looped video of two silhouettes discussing disclosure. This gave participants the ability to formulate conversations, setting, reactions and faces on their own while furthering their ability to create a conversation about HIV when they left.
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Execution Participants were also given a pink triangle to wear within the space making them a touch point. Larger pink triangles were used to establish touchpoints as well. Another take away, was a manifesto of what it is to be Disclosional.
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Execution I also included in my event an iPad that presented the stories of children who had a parent who died of HIV along with an object that correlated to the story they had told. Stories were collected from The Recollectors, a new website designed to tell the stories of children who grew up with HIV in their lives. Participants were able to interact with the iPad to scroll through the stories. These are the stories that were presented.
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My inal thoughts.
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In order to end HIV, we need to talk about it more actively. Conversations do not always work, but in the case of HIV they are imperative. It thrives in silence and has now for many years, and it’s not over, it is increasing. HIV has increased in 13-24 year olds over the past decade and is till rising. These are the future of our workforce, do we atne them to be infected? It is your duty, his duty, and my duty to talk about HIV. Disclosional has hopefully has left you with the tools to talk about, interact with, and think about HIV in new ways, while drawing attention to the rising apathy towards HIV. Whether you are connecting with or directing friends towards the app HiV or using Oraest to know your HIV status, you have the tools now to do so. I encourage you go to events like Disclosional and to use the book as your tool to talk about HIV. Because if we are not careful HIV will start all over again.
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