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>.

Why do people suffer for being who they are?

A guest blog by Helena Sunday Candy Nangombe, Namibia      

Life is a gift freely given. I think we all have to enjoy our life in our own way and in doing so discover ways of making ourselves happy. Although we got it free, this does not mean that we are the same because I am me and you are you. So I do not understand why many people suffer for who they are in this world because of being gay, lesbian, or openly living with HIV. It does not mean that you have to be like a person to support them, but you have to support others because of the LOVE you have for them and you must show it. We all know that gay, lesbian, disabled and people living with HIV are our brothers, sisters, mothers, fathers, daughters, sons and people around our community. We have to show LOVE and CARE to them. If you do not do that then who do you expect will do the same on your behalf?

It’s our own people that we are stoning to death. What is the use of hating and beating up gay and lesbian people? When we talk of rights for all, where are the rights for them? Where and when are they protected? They can’t walk freely in their own home town. People call them so many bad names. Here I call it time wasting because even in Africa where people believe that this not a place for gay and lesbian people, they are here and they will be here because they are from here and they have feelings like you and me.

 It’s still hard because inside your house you are somebody else and when you are with people who really understand you, and then you are somebody else again. It’s simply called feelings- why can’t they be allowed to fall for whomever they want when they are just human being like anyone else? Why do they even have to fight for this in the first place? Our friends, brothers and sisters are homeless now because their family disowned them for being who they are and for not hiding their feelings. I have a child and I am not the master of his destination or happiness. I will love him always as his mother no matter what he might be. 

I see us going nowhere with this much stigma and discrimination among us. Instead of us being part of the solution, we are part of creating more problems. Young people, do you see yourself achieving anything? I know that we are the future and leaders of today so let’s fight stigma and discrimination. You are committing no crime by loving and respecting those people for who they are. The best medication of people living with HIV is to be stress free and have support, love and care from people around them. Even in this world when ARV treatment is helping people living with HIV to be so well, the discrimination is still there. Wake up world, we are not dying of HIV like in past years when there was no ARV treatment. Things are much better now so let’s just work on addressing stigma and discrimination because we will get nowhere as long as people living with HIV continues to be mistreated and stigmatized.  

In conclusion, I am young, tall, and I have all that can make a woman beautiful. I do not care if people think I am gay, lesbian, or have HIV. What I care about is fighting for everyone’s rights and to see that my efforts mean something to every person. If I have to walk naked for people to hear me, then I will do it. I am here fighting for the right of people living with HIV and the right for all. In all my stories, I like to say young people, let’s hold hands together and walk together as one. I am nothing without you but with you I will achieve a lot. I need you and you need me. I love posting because this is the only way I can talk to many of you- to anyone who is reading this and might be going through some difficult times. Now, I want you to know that you are not all alone because you have me as a friend and sister and many other people around the world. If you find yourself down, please pick yourself up and stand tall because I know you can do it no matter how hard it can be. Live your life like there is no tomorrow and be happy always. I have to love and leave you now until next time.

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!