A Day with HIV: Walking the Walk

Maybe sometimes you wonder who I am—the person who manages much of the Stigma Action Network’s (SAN’s) social media—my name is Kirsty, and I have been the Stigma, Discrimination, and Gender Intern at the International Center for Research on Women since February 2013. Every weekday, I come to work and I sit in a cubicle where I pour over the latest in HIV and stigma, distilling that information down to posts that I think you—our SAN users—will find digestible and interesting. I learn a lot about HIV and stigma from writing these posts and from engaging with the SAN’s incredible community of #StigmaWarriors (like you!). However, I have never been so humbled by or able to empathize quite so much with this cause as when I “walked the walk” of a #StigmaWarrior—the day I went in to take my very own HIV test. 

One day shortly after I started this internship, as I was perusing my SAN newsfeed I saw that Whitman Walker would be conducting free HIV tests at my university. While I shared information about HIV testing on Facebook and Twitter,  encouraging people in the DC area to take advantage of this free and quick testing opportunity, before this moment I had never been tested for HIV or even thought about getting tested, as I had little reason to think I would be HIV positive. As soon as I shared this post I was struck by an awful sense of hypocrisy: I sit here, every day in this cubicle and encourage people to get tested, to be greater than HIV, to be greater than stigma, and I have never even been tested. I immediately grabbed my phone and set a reminder to attend the testing event on campus, determined to practice what I preach.

The day the mobile clinic was on campus, I was speaking at one of the Nursing and Health Studies School’s (NHS) events for Georgetown’s Accepted Student Weekend in a building across from where the mobile clinic was parked.  After the event, I calmly headed to the mobile truck, but as I neared, I saw one of my professors and my body went into a panicked autopilot, causing me to walk straight past the truck. I did a lap around the quad, shaking off my embarrassment and riling myself up to try again. This time, out of the corner of my eye, I saw one of the parents who had been talking to me after the NHS event; again I walked right by the clinic, completely overwhelmed with a mixture of fear and unwarranted, shame. This happened two more times. On the fourth, I walked 15 feet away from the truck and stopped to collect myself. 

If I ever needed a moment to personally reaffirm why it is so important to reduce the stigma surrounding HIV, this was it. I’m normally a very self-assured person, but the reality of (what turned out to be very publicly)  getting an HIV test shattered almost every shred of confidence I possessed. As I was standing 15 feet away from this clinic, trying to be inconspicuous by pretending to stare at my phone, I started to feel annoyed with the situation. I did not like feeling so afraid of being judged, especially for taking part in an activity which should be part of a person’s annual health routine. I knew what I was doing was the responsible thing to do—so who has the right to make me feel ashamed? If anyone chooses to discriminate against me for taking the test, at the end of the day that is their problem and shouldn’t be mine. 

After what I can only describe as a very fervent internal pep-talk, I turned around and briskly walked to the first volunteer and rapidly blurted out: “HiI’veneverhadanHIVtestandIwanttogetone” I didn’t want to give myself another chance to walk away. They directed me into the truck, where I nervously babbled to the volunteer as she handed me a few pages of paperwork and the HIV test that I simply had to brush along the inside of my mouth. 

After taking the test, I was nearly floored when the volunteer told me I would have to leave the truck it had taken so much out of me to enter, and then come back for my results in 30 minutes. I went to grab an iced tea to cool my nerves and kill time before I had to get my results. During this time, that nasty little part of your brain that plays devil’s advocate started to get the better of me. What if the results were positive? What would my parents think? Would my friends be supportive? My boyfriend would probably dump me before I finished telling him. 

A half hour of agonizing and “what if-ing” later, I was relieved to find out that my results were negative. But the sense of unease I had been experiencing for the past hour persisted as I reflected on my experience.

Perceiving stigma and discrimination from practical strangers and then contemplating with so much uncertainty who, if anyone, would be there to support you if those results were positive… that shouldn’t happen to anyone…ever. This experience allowed me to emphasize and truly understand just how important the work of organizations, like the SAN, to reduce HIV stigma is. 

If we want to arrive a world free of such stigma, we all must do our part. We must iterate and reiterate the message that taking charge of your health—by using protection, getting tested, or seeking treatment—is something to be proud about, not ashamed of. Showing empathy and support to all people in the global fight against HIV (even through such actions as making STD/HIV testing a routine part of your life) is a critical component to ending HIV-related stigma and discrimination

I am very proud to say I left my cubicle, and I “walked the walk”. I encourage you all to do the same and take your own steps against HIV stigma. I know I will continue to take my own.

________________________

September 21st is the "A Day with HIV" Awareness event! Take a step against stigma and send a photo to photos@adaywithhiv.com! For more details about this event click here.

Be sure to visit the SAN social media pages to see how we are taking part!

Stopping the Deadliest Epidemic: Stigma

Ladies and gentlemen –we are in the midst of a global epidemic, more terrifying and destructive than anything depicted in the summer blockbuster, World War Z!

The menace is a harmful state of thought, capable of endangering the health and well being of individuals outside of its host – it’s called stigma. While stigma takes many forms, the particular strain we will be discussing is HIV stigma. “HIV/AIDS-related stigma is a complex concept that refers to prejudice, discounting, discrediting and discrimination directed at persons perceived to have AIDS or HIV, as well as their partners, friends, families and communities” [1].

HIV stigma can result in such harmful outcomes as [1,2]:

• Preventing people from getting tested and seeking treatment
• Loss of income/livelihood
• Loss of marriage and childbearing options
• Poor care within the health sector
• Withdrawal of caregiving in the home
• Loss of hope and feelings of worthlessness
• Loss of reputation

Luckily there is a way for you to help actively prevent its spread. By taking the following steps, whether you are living with HIV or not, you can stop the spread of HIV stigma!

1. Educate Yourself:Learn the facts about how HIV is spread, how a person can lead a full and healthy life with HIV, the proper language for discussing the virus, etc. By educating yourself, not only can you protect yourself from contracting or spreading HIV and stigma, but you can speak up and educate others!

2. Speak Up:When someone has an incorrect perception of HIV (for example: they believe that you can get HIV from sharing food with someone who is living with the virus) you should speak up and correct that misunderstanding in order to stop the spread of HIV stigma. It is very important not to be afraid to talk about HIV. By speaking up, starting a conversation, and educating others about the disease (what it is, what it isn’t, what causes it, how it is treated, etc.), YOU can help maintain a healthy dialogue that challenges negative, false, perceptions. You can do this frequently and virtually by blogging, sharing articles, etc.

3. Be Supportive:Don't let internalized stigma build up among those living with HIV. Whether you are or are not living with HIV yourself, if you come across someone who is struggling as a result of such HIV stigma, show that you are there for that individual and help them realize that there is a community of people they can turn to for support.

4. Take Care of Yourself:If you do not have HIV, be sure to practice safe sex and get routinely tested for HIV. If you already have HIV, make sure that you are monitoring your viral load and sticking to whatever treatment you and your healthcare provider have worked out!

5. Live:If you are HIV positive, it’s not the end. As Josh Robbins, from I'm Still Josh, so eloquently put it when he was coming to terms with his positive status: "I'm still Josh, you still be you." You can and should still live your life the way you have always wanted to. Be an example for yourself and others!

If you follow these measures, you will not only stop the spread of stigma, but also improve the health of others around you! More people will feel confident to take measures to prevent HIV, to get tested, get treated if necessary, and live a healthy life!

Resources:

• The Stigma Action Network
• I’m Still Josh
• AIDS.gov
• CDC
• Just Get Tested
• National AIDS Hotline: 1-800-CDC-INFO (1-800-232-4636) 

Further reading:

• Graphic Intervention
• How Does Stigma Affect HIV Prevention and Treatment?
• Integrating a Youth-based Stigma and Discrimination Reduction Curriculum in Higher Education 
• Reducing HIV Stigma and Discrimination: A Critical Part of National AIDS Programmes
• Stigma Busters: Empowering and Enabling Local Governance to Work towards Stigma-free Gram Panchyat 
• Stigma in Women Living with HIV
• Taking Action Against HIV Stigma and Discrimination
• Understanding and Challenging HIV Stigma: Toolkit for Action

Works Cited:

1. "How Does Stigma Affect HIV Prevention and Treatment?" Center for AIDS Prevention Studies. UCSF, n.d. Web. July 2013. <http://caps.ucsf.edu/factsheets/stigma/>.
2. "HIV & AIDS Stigma and Discrimination." AVERT. N.p., n.d. Web. July 2013. <http://www.avert.org/hiv-aids-stigma.htm#contentTable3>.

An exclusive from Josh Robbins of imstilljosh.com

Breaking news from Josh Robbins of imstilljosh.com!

In our interview on June 17^th, 2013, Josh revealed the next incredible contribution he is making to the community of people living with HIV. He is going to be creating an I’m Still Josh (ISJ) HIV phone/tablet app!

“I have looked at all the HIV apps on the market and while they all have their own individual amazingness, there is no particular one that I would go ‘hell yeah this is the HIV app for those of us living with HIV,’” said Josh, when explaining his desire to create his own app.

Josh’s goal is to make an HIV app that will be truly useful for people living with HIV.

Some of his ideas for an ISJ HIV app include a:

• Discrete icon: it would be hidden behind what looks like a camera application so the icon doesn’t, according to Josh, “scream HIV”
• Password: so no one but the user can access the user’s personal information
• Health newsfeed: with the latest HIV research and information. The newsfeed will be interactive and not promote any one individual health product or pharmaceutical organization.
• HIV data tracker: This will track information  such as a user’s CD4 count, viral load, etc.  All data will be able to be translated into a graph or table.
• But wait there’s more! Furthermore, users will be able to send this data to their computer, email, or wherever they want in the event they want it for their records or to share with a physician. As with all other aspects of the app, there will be no identifying information on these files to connect it back to the user.

Sound interesting? Is there something you would like to see on the ISJ HIV app? Josh would love to get your feedback on what you think would be an important feature to include! If you have a great idea (and if you are part of our SAN community, we are certain you do!) contact Josh!

In order to make this app a reality, Josh is currently in the process of raising $3,000. If you would like to make a contribution click here!

The SAN looks forward to seeing this awesome new application from Josh and ISJ! We are certain it will have as big an impact in the community of advocates and people living with HIV as Josh himself has!

A big, big thank you to Josh for an amazing interview! Be sure to check out the blog post or the podcast if you haven’t already! And to learn more about Josh and his amazing work visit his website, Facebook, and Twitter!

An Interview with "Stigma Warrior," Josh, from imstilljosh.com

Josh Robbins learned on Jan. 24, 2012 that he was HIV positive. He “decided to make a blog because [his] new circumstance of being newly poz [wasn’t his] death sentence… or even close to what defines [HIM] as Josh.” His blog has gone on to inspire many allies and people living with HIV, and he continues to a strong figure in stopping the spread of stigma.

Visit imstilljosh.com to learn more about this incredible individual!

Listen to the podcast of this interview! 

SAN:  You have been running your blog for about a year and a half now—what has been one of the most memorable moments or learning experiences?

Josh: When I started the blog, I didn’t know what it was or would be—and I still feel that way sometimes. Through this medium, I am just sharing my experiences and journey and what it has been like for me to live with something day-to-day, month-to-month, and now over a year that I was completely scared of as a gay man.

With that said, it has been a process of seeing this platform grow and handling the unexpected responsibility that comes with it. I have been surprised with the amount of people who engage with me through I'm Still Josh (ISJ). Almost every day someone contacts me and shares their very personal stories which I am honored and humbled to hear. That has really been the biggest thing from imstilljosh.com and so I feel partly a responsibility to respond to those people for sharing that. I want to thank them for investing their time and for hearing about my continuous journey.

SAN: What do you think your impact has been in terms of stigma reduction?

Josh: What I found is that we have these digital stigma warriors (and I like to include myself in that) who are changing the way people think about HIV. There are different ways of understanding HIV, for example: as an HIV negative person who thinks HIV is the worst thing that could happen to you and living in fear of it; and then as an individual who is diagnosed and realizes it is not a death sentence and you can still be you. Closing those mental barriers and taking down those walls --it requires talk from people and organizations like ours to do this. That is what I feel like I am a part of and what I have committed to thus far.

I believe that if we catch people who are recently diagnosed and we catch them early enough and encourage the hell out of them then we have the ability to change them from being victims to heroic stigma warriors who educate the community about what HIV is, how to prevent it, and how to live alongside people like us. That encouragement period of time is so important to me and that is what I have concentrated the most on. That part of my life has the most success. It is something I am very passionate about.

SAN: Well I saw you started an encouragement wall on Facebook, so that is a very concrete way that you are digitally supporting people.

Josh: Yes! And I haven’t officially launched it yet—but my goal is for it to be the largest digital encouragement wall for those recently living with HIV. What I am doing is getting quotes from different significant people to influence how those who are recently living with HIV feel about themselves.

The idea actually came from the AIDS Quilt. It is so big and people are constantly adding to it, and that’s what I hope to see from the Encouragement Wall on ISJ. Eventually users will be able to come to the site and make their own and have their work immediately added to the wall. I am excited to see how it develops with people’s different words, pictures, and forms of expression.

“If you don’t talk about HIV, and you don’t 

talk about those elements that turn 

into stigma—how can you ever 

combat it and end it?”

SAN: That sounds great! Us too! What do you think the most effective way for people to reduce stigma is (aka be a #StigmaWarrior)?

Josh: I think that HIV needs to become real to individuals and their networks by talking about it in a very personal way. It requires a bit of trust and vulnerability from people--like myself--who are living with HIV. Furthermore, it is equally as important for people to stand up as allies to and speak out for the community of people living with HIV.

The whole reason I got involved with this was because I went to a group therapy session for people living with HIV in Nashville. Everyone seemed to have an attitude of defeat.

They told me: “Josh, you just don’t understand what it is like to hear these words, for people to not want to date you because of this virus.”

My response was: “If you don’t talk about HIV, and you don’t talk about those elements that turn into stigma—how can you ever combat it and end it?”

For me that was an epiphany --when I left and I refused to shut up. From that, I have really learned to and convinced myself that I am going to be ok, all of which has really reduced my internal stress as well as helped my health and impacted my view on HIV.

SAN: Very true. Well, those are all my questions. Thank you again so much for taking the time to do this interview. It has been a real pleasure.

Josh: Same here, but before we go I want to tell you something… 

Check out the exclusive story Josh gave the SAN!  

A Conversation with Laurel Sprague on the PLHIV Stigma Index Roll-out in the US-- Part 2

View Part 1 of this Interview...

SAN: What are the biggest lessons learned from the Index thus far?

Laurel: Something I didn’t realize until I started working with this data is the existing level of internalized stigma and discrimination and how that impacts people’s behaviors in ways that can really limit our health and well-being. In some countries the percentages of people who have considered suicide in just in the past year because of their HIV status is heartbreakingly high.

The percentages of people across most, if not all, of the sites I have seen who have avoided getting health care when they needed it because they were afraid of being discriminated against are, again, really high. I think this really speaks to the challenges for people living with HIV just to have a healthy life with dignity. Even when health care was formally available, people still avoid it because of the risk of mistreatment. That has hit me hard.

SAN: What are the biggest barriers and issues the Index has identified that serve to perpetuate stigma against people living with HIV?

Laurel: We asked people in the survey questions about their perceptions regarding why HIV stigma and discrimination occurs. The responses are interesting to me because a lot of people say it is just basic ignorance about the facts of transmission. This is a sad statement given that there has been so much education over the past 1-2 decades globally. It may be the situation that people know the facts but don’t really believe them and so they are still afraid of people living with HIV and see us as a real threat to their health when we are actually not.

In terms of the common locations where people report that they face discrimination, I would say that healthcare settings are the center of HIV discrimination for a lot of people. It is not that health care workers are necessarily more discriminatory than anyone else, instead,  they are the people who are most likely to know someone’s HIV status -- which puts them in a position where they can discriminate. However, when we ask respondents to tell us what groups have been supportive or discriminatory towards them, a significant portion of respondents identify healthcare workers as the most supportive people with whom they  come in contact. I think part of the challenge for people living with HIV is that you don’t know when you go to see a new healthcare worker whether you are going to be treated badly or not. There are providers who refuse to see you, to touch you, to provide the services you need, or who question you inappropriately. On the other hand, within the healthcare field, there are these really committed people who provide healthcare for people living with HIV, who I know in many cases are a lifeline for their patients.

SAN: What do you think the greatest benefit of the Stigma Index will be?
Laurel: What I would add to the things that we have already touched on, would be the opportunity for increased solidarity among people living with HIV and our allies and advocates in the HIV field. We don’t always get to hear each other’s stories and understand how stigma affects people within our own community. It gives us the real opportunity to collaborate across communities.

In addition to that, at the end of this we will have people living with HIV across the country who received additional job training through employment and involvement in the Stigma Index project. They will have gained project management, advocacy, organizational, research and data skills. Hopefully, these skills will be combined  with a sense of self-empowerment and of commitment to the full community of positive people so that we can come together  as people with HIV, and we can make a difference that improves the lives and well-being of all of us – particularly those living with HIV who are the most vulnerable to the multiple challenges from poverty, racism, homophobia, transphobia, misogyny, etc. that limit people’s ability to access the services they need to live healthy and full lives.

SAN: How can members of the SAN get involved?

Laurel: I would like anyone in the SAN who is interested to be involved. We are putting together an academic advisory council of people who can provide any amount of time they have, according to their own schedule, to weigh in on different questions, results, and the implementation.

If people contact me and let me know what they are interested in, then I can bring them in. This is a collaborative process so the more brains, hearts, and hands we have involved there better. 

A big thank you to Laurel for a very interesting and informative interview! If you would like to contact her about the Stigma Index please email coordination@gnpna.org.

Furthermore check out another interview she did along with Eric Sawyer for AIDS.gov after their PACHA presentation on the Stigma Index to learn more about this awesome project!

View Part 1 of this Interview

A Conversation with Laurel Sprague on the PLHIV Stigma Index Roll-out in the US-- Part 1

Laurel Sprague is the regional coordinator of the North American affiliate of the Global Network of People Living with HIV (GNP+NA) and is herself living with HIV. She has provided technical assistance globally on the development and implementation of the PLHIV Stigma Index since 2009 and is leading the U.S. implementation. Furthermore, she teaches in the Department of Political Science at Eastern Michigan University. She’s a great advocate and has extensive expertise in survey research.

SAN: For readers who aren't familiar with it, what is the PLHIV Stigma Index?   

Laurel: PLHIV Stigma Index, or The Stigma Index, is a research action tool for communities living with HIV to be able to document our lived experiences of HIV-related stigma and discrimination, and to then use the results as evidence for advocacy work on our own behalf.

SAN: How did the People Living With HIV Stigma Index get started?

Laurel: The Stigma Index was created by four founding international partners: UNAIDS, Global Network of People Living with AIDS (GNP+), the International Planned Parenthood Foundation (IPPF), and the International Community of Women Living with HIV (ICW). Those organizations worked with existing surveys and with networks of people living with HIV to put together the questionnaire and the process. The idea was to be able to gather data and empower people living with HIV to manage the process and to use the data for evidence based advocacy.

SAN: How does the Index work? How are you using it to measure stigma?

Laurel: We measure the experience of stigma and discrimination from the perspectives of people living with HIV. The Stigma Index accomplishes this by training people living with HIV as interviewers who then interview other people living with HIV. This allows people living with HIV to talk openly, honestly, and safely – because they are talking only with other people living with HIV - about how stigma and discrimination has affected their lives. Additionally it looks at a comprehensive life picture of a person living with HIV by taking into account how their membership in other identity groups that face discrimination may intersect to create different forms of stigma and discrimination as well as at what people living with HIV can teach others about sources of support, resilience, coping, and self-efficacy.

SAN: Where has the Stigma Index been rolled out so far?

Laurel: It’s been implemented in more than 45 countries. It’s been implemented in every region of the world but never within the U.S. or Canada until now.* We are currently engaged in early discussions with PLHIV, AIDS service organizations,  and collaborative research institutions in Canada about the prospect of an implementation there.

SAN: How successful has the S.I. been so far? 

Laurel: That is an interesting question because what immediately comes to mind are two different kinds of success. There is success in gathering solid information across communities of people living with HIV—and some countries have been more successful than others in being truly inclusive of the diversity of all our communities. Ukraine is an example of a country that did an excellent job involving people from all key populations across the country. They have something that many of us look at as a model stratified sampling process that they used to identify which populations needed to be involved and then how to recruit them.

The other way I would categorize success would be by looking at what the advocacy outcomes have been and the self-empowerment for the people living with HIV. For example, when the Estonia Network for people living with HIV looked at their research results, one of the areas that they saw was a huge issue was the effects of HIV on employment discrimination. They initiated a project to educate employers in Estonia and to encourage them, first, to not discriminate based on HIV status and, second, to openly recruit people living with HIV for positions. They were successful in creating a network of employers who have committed to non-discrimination and who post publicly within their buildings that they do not discriminate against people living with HIV.

Check out Part 2 of this Interview!

*Please note that the North American Region in this context is considered to only include the USA and Canada

Employment: An Emerging Strategy in HIV/AIDS Treatment and Prevention?

By Mark Misrok, MS Ed, CRC, President, Board of Directors, National Working Positive Coalition

Since the epidemic’s emergence in 1981, the employment-related issues, needs and opportunities of people living with HIV/AIDS (PLWHA) have greatly evolved. Public policy, understanding and service system response have struggled to keep pace, but a recent quickening of employment initiative development is unleashing new optimism.

For many, the overwhelming phenomenon of the first 15 years was people disconnecting from work, going on disability benefits, and dying shockingly soon.

As news emerged in 1996 about new, effective combination drug therapy, the landscape was beginning to change, even for the very sick.

People who had left work, leaving vocational identity and career goals fading in the rear view mirror, unexpectedly faced wanting or needing to go back to work. Some PLWHA were seeking to establish work lives and careers for the first time.

Many had experienced great change in physical capacity and in what they wanted and needed from a job. Many lacked or had outdated skills and qualifications. PLWHA and service providers struggled to understand what happens to people’s disability benefits when they went to work. Many people had personal debt, tax, or legal issues.

Fear of HIV stigma, disclosure and discrimination also influenced many to avoid change. While confronting all of these challenges, PLWHA still had to find ways to build a new life.

With help from pioneers from the HIV/AIDS, vocational rehabilitation and workforce development communities, pathways to employment for PLWHA slowly began—and can continue—to develop. The definition of success in this era of HIV/AIDS would go beyond successful treatment of HIV.

Awareness began to develop of the poverty, social isolation, and blocked vocational development of thousands of Americans living with HIV/AIDS. Excitement built for a more hopeful era of a large-scale transition to work movement among PLWHA. At the same time, others were terrified of the risks for disabled PLWHA attempting a transition to work without:

• evidence of sustained benefits from medications
• manageable side effects
• continued access to medical care and treatments
• support services that brought them the stability to consider employment
• a system of vocational services prepared to assist them effectively

Many service providers initially hesitated to adopt a recovery model for HIV/AIDS services, which would include encouragement to consider goals, including employment and vocational rehabilitation.

The movement emphasizing employment began with MTS and Housing Works in New York, Positive Resource Center in San Francisco, Whitman-Walker Health in DC, and AIDS Project Los Angeles, and continued with the National Working Positive Coalition and several community-based initiatives around the country. Building on the release in 2010 of the first-ever National HIV/AIDS Strategy, the Department of Labor’s Office of Disability Employment Policy has led at the federal level, with the key role of employment recognized among social determinants of health. Pioneering initiatives also emerged from the Department of Housing and Urban Development’s Office of HIV/AIDS Housing. The Department of Justice and Equal Employment Opportunity Commission emphasize and enforce workplace protections under the Americans with Disabilities Amendments Act.

In a 2008 national survey of more than 2500 PLWHA by Dr. Liza Conyers of Pennsylvania State University, a significant percentage of employed respondents reported positive health outcomes and reduced risk behaviors after transitions to work.

New initiatives and coordination of existing resources are increasingly cause for optimism. If information, resources and supports were available, many PLWHA could better equip themselves to make well-informed decisions about employment. Potentially many could succeed in transitions to work.

____________________________________

“The first fifteen years of the epidemic were about dying—first quickly, then a little more slowly, but it was all about dying.

The next five years were about not dying.

It’s my hope and belief that this next era of the HIV/AIDS epidemic is about living, really learning to live fully, with HIV.” 

2004

Eric Ciasullo, founding board member, National Working Positive Coalition