IAC: Lindsay

Hey everyone, my name is Lindsay Avrutine, and I am SMART’s Social Work Intern since January 2012 while I get my Master’s degree from Hunter. One of the best parts of this year was going to the International AIDS Conference in Washington, DC with SMART Youth. It was something I’ll never forget!

From July 22 to July 27, 2012, SMART Youth leaders went to the International AIDS Conference (IAC) in Washington, DC, the first time the conference has taken place in the United States since 1990. We were so excited to learn that our request was accepted to participate in the Global Village, the free part of the conference where organizations from around the globe set up booths to represent their ideas, their cities, and their prevention/awareness efforts to end HIV/AIDS.

All in all, the International AIDS Conference was a huge success! The SMART Youth booth inside the Global Village was designed around our graphic “I Love Safe Sex”, the logo that was emblazoned upon many of the items sold, such as magnets, buttons, t-shirts, and even boxer shorts! Our SMART Youth artists donated their original work for a silent auction and created DIY t-shirt tote bags, and many people at the conference were seen sporting a SMART Youth “I Heart Safe Sex” button!

We were able to learn about other youth organizations from around the world, as well as up to date information about HIV/AIDS research. SMART Youth co-founder, Christina Rodriguez, served as our delegate at the IAC, and attended several workshops and seminars conducted by notable individuals in the field of HIV/AIDS (read her blogs below). Through exploration of the Global Village, we were able to collect pamphlets and condoms from around the world, and through our digital outreach project we spoke with representatives from a variety of nations to interview them about sexual health and sexual health education in countries like the Ukraine, Jamaica, Great Britain, and Gambia.

Many thanks to those who contributed to this once-in-a-lifetime experience, including those who donated both time and money to the trip! Stay tuned for our video clips…

IAC: See you in Melbourne, Australia!

Excited for Melbourne, Australia in 2014
(And loving her new cute Koala friend!)

Christina neglected to share this joyous moment at the International AIDS Conference, so, we at SMART thought we should share it.

See you in 2014!

Post: International AIDS Conference (Intro)

SMART Youth conquered the Global Village at the International AIDS Conference in Washington DC!

We sold, we educated, we connected, we promoted.

I believe (Christina Rodriguez), can speak on behalf of all they youth, and adults that helped make the booth possible, that the experience can not be compared to any other opportunity!

Since I was the only registered delegate to the conference, I was able to sit in on panels and workshops outside of the Global Village.

There were some hits, and some misses, and in order to give you the inside scoop I am going to summarize my notes and thoughts on each of the panels I went to during the week of the International AIDS Conference.

The International AIDS Conference XX of 2014 will be in Melbourne, Australia.
Fundraising anyone? :)

SMART Youth: I Love Safe Sex Booth Display

*DISCLAIMER: These are PERSONAL and FIRST HAND descriptions of how I felt and my ideas during the panels and workshops. I'm not trying to take over the SMART Youth site with my story, but it will come up.*

Post: IAC (First Day of Panels, 1)

Monday, July 23rd, 2012

Food, Nutrition, & HIV

This early morning panel intrigued me based on the fact it had food in the title. Just Kidding! Actually, I was more interested on getting information to bring back to SMART Body since the e-cookbook is being prepared, and healthy eating is always high on SMART's list of priorities!
What I sat in on wasn't what I expected. Did I gain some new information? Yes, definitely. But this panel was research based and I couldn't really find a solution within the conclusions of each presentation.

Agnes Binagwaho (Rwanda) started the panel off with some logical points and facts.
"Good food is a HUMAN RIGHT. Malnutrition is a DISEASE."
This panel used the questions, "What are the best foods for those living with the disease (HIV)?, and how can we help people PRODUCE what they need to eat?" as the start to their research analyses.

Jim Sherry (USA): Service Integration as a strategy for improving access & retention in HIV & MNCH Services.

A lot of the language went over my head, but I tried my best to keep on track and mark down vocabulary that I should search later. For example what the acronym MNCH actually stood for, (Maternal, Newborn, & Child Health).

This presentation talked about integration of health care across different life cycles from pregnancy to adulthood in order to help the retention of HIV treatment.

In conclusion Sherry stated that, "Nutrition needs to be used as a quality [of life] improvement measure that includes the community and family."

Again, I learned new ideas and terms, but there seemed to be a lot more compare and contrast between Public Health models in order to improve nutrition and food access against a Medical model.

Christine Warke (USA): Optimizing Nutritional Status in HIV.

Warke listed the key factors of her research model and some background information on the biology of human beings.

The BMI (Body Mass Index) depends on Dietary Quality, which depends on Food Security (how easily food is accessible to someone). Then all of those factors create someones "nutritional status" (weight).

"Energy In" is charted as: Dietary intake, micro/macro nutrients, total energy intake, dietary quality and diversity.

"Energy Out" is charted as: Resting energy (HIV, fever, viral load, medications), infections, physical activity, dietary thermogenesis (food quality)

These definitions were the foundation in order to start research on the question: "What are the ENERGY requirements for HIV?" (And how does that translate into food and nutrition).

I have never really thought of HIV as being a factor for metabolic changes or energy requirements. After this presentation though it definitely made sense. ART (Anti-Retroviral Therapy) can be very harsh on the stomach and digestive system, also a lot of the medications need to be taken WITH food in order to decrease debilitating side effects.

Along with that, Food Security is also a major factor for food vs nutrition vs HIV treatment. I knew of the concept, but I finally encountered the word that is associated with this dilemma.

When research was conducted (Hanoi vs Chenai) the data collected helped to determine whether the people living with HIV were in need of food (in general) or nutrition (what foods to eat in order to help with medications).

In conclusion, there was no set conclusion, research is still being analyzed and conducted. The question of "What is the best COMBINATION of food to give [for people living with HIV]?" still stands. I'm still thinking about it today.

Louise Ivers (Partners in Health: HIV Equity Initiative): Nutrition in Haiti with HIV Care  

Ivers started out by giving background on the country of Haiti:

• 10 million people
• 1.9% prevalence rate of people living with HIV between the ages of 15-49
• HIGH food INSECURITY
• High cost of living, income insufficient (most/all income spent on food)
• 20,000 with HIV in care, 7,300 on ART
• HIV positive people are MORE likely to have food insecurity stress  

The research conducted by the Partner in Health: HIV Equity Initiative gave food as prescription (rations) to people who qualified for their study, (low CD4,  low income, household number).

Then at random different households who have someone living with HIV got one out of the two food baskets. Either Corn-Soy blend spread or Ready to Use Therapeutic Food (RUTF, high in protein and energy). Research is still being conducted based on which blend is better for the HIV positive person, or even if there is a difference.

An interesting study, but I was left a little confused by the ethical aspect of it all. If Haiti has a high food insecurity, how can a program that has food actually deny people who need it in general. Something just didn't sit well with me with this research. I know it is a more complex situation than I am making it out to be but something inside of me is slightly turned off about requirements for food to a certain group.

Sebastian Stricker (World Food Programme, Rome): Food and Nutrition Interventions to Improve Access for PWHIV 

This was the last presentation so there was a lot of overlap in the information being presented. (I will be honest I was started to lose my focus by the end, it did help that Stricker was an attractive Austrian with a nice accent... that is besides the point though, or is it?)

The information was mostly based on Zambia during the World Food Programme's intervention.

Stricker focused on the affects of food insecurity:

• Increased hunger (seems obvious, but more in the sense that one meal will not suffice)
• Exacerbated side effects (for those on medications)
• Competing demands (over needs are necessary in third world countries, it becomes Hunger vs HIV, Transportation to clinic, medication, clothing, water, etc.)

There was a 48% increase with adherence when food/nutrition care and aid was provided in Zambia. That is a conclusion I like to hear, and obviously shows some sort of solution we can work towards.

Overall, this panel was an eye-opener to some new vocabulary and concepts. But these researchers should really work on trying NOT to make people just numbers and data in a project.

Post: IAC (First Day of Panels, 2)

Monday, July 23rd, 2012

Growing Up with HIV: Transitioning from Childhood to Adolescence to Adulthood

I had HIGH hopes for this panel; something that relates to me personally and that I had been questioning for some time.

What do I have to expect? What resources do I have? Who should I talk to? Are there going to be people who have gone through the motions already talking about their experience?

Well, this was NOT that kind of panel. It was positive in the sense that the presenters were talking about community ACTIONS in their countries in order to assist and educate families and children living with or affected by HIV.

(All presentations are easily summarized.)

Gabriel M. Anabwani (Botswana): Challenges & Coping Mechanisms of HIV Infected School Age Children in Botswana 

The children described are from ages 6-18 years old, HIV positive, and on ARV treatment, all needed parental consent in order to be studied. The study was to help figure out coping strategies for children in school.

The majority of the children were missing school because of doctors and medical appointments, as well as other illnesses. Some were slightly fearful in school because of discrimination within the academic setting.

Anabwani found that there was an increase in psychological problems within children dealing with their HIV status. I can agree to this, but I didn't know how they came across this realization. Possibly if fear, and isolation is presented through the child because of discrimination that could be associated with psychological problems. That is the conclusion I came up with and it makes enough sense.
(Let me know if you have any other theories).

Desiree Salazar (Peru): Psychosocial Changes in Children with HIV in Lima, Peru

The majority of this presentation was in Spanglish. Thank goodness I have a few years of Spanish class under my belt, but she did try her best to keep it consistently in English.

The major points were how the families found it difficult to speak about their diagnosis or their child's diagnosis in the social setting they live within.

Salazar's community program promotes self-care, and reducing stigma with art. Along with that there are educators training community leaders and teachers about stigma and sensitizing them to the situations that an HIV positive child may encounter.

Kudos for community help!

Florin Lazar (Romania):

At this point I got an interesting and to the point history lesson. During the 1990's, while Communism was still prevalent in Romania, due to unsafe and unclean syringes supplied, many babies were infected in hospitals.

Romania is now a low prevalence country. ARV coverage is around 81-83%.

What some children in Romania have experience, if they are HIV positive, is that the families will become over-protective and not send the child to school.

Well, new information obtained! Obviously something is working in the country that their prevalence count has decreased. There seems to be some discrimination and stigma still prevalent if children are kept from school though...

Fabian Cataldo (UK): 10-19 year old children in Malawi, Mozambique, Zambia, and Zimbabwe

The majority of these children were orphans or with single parents.

Girls with HIV are more likely to leave school. I don't know why this is, but it could be possibly that discrimination is higher against females with HIV than males? It could be the because of the fact later presented that many young, HIV positive, girls arrive pregnant at health services.

What this presentation touched on that the others did not is the sexual and reproductive health of the youth (I'm tired of putting children, youth is such a nicer word) living with HIV. Abstinence based education is strongly enforced. Families are not equip of how to cope or discuss status OR sex. Many children aren't even told why they are taking medications.

Because of the abstinence based education, condoms are not always available or rarely discussed. There is a growing number of community spaces for HIV positive youth to gather and become educated on safe sex practices and other information regarding their status.
Again, kudos for community!

Gary Harper (USA): 18-25 year old youth in Kenya


The main focus has been on perinatal HIV positive youth, but there has been an increase in behaviorally infected youth.

What these youth have found is that in order to cope with their new HIV positive identity, they have to have a social support system. This system includes their partners, friends, healthcare workers, other PWHIV, co-workers/employers, religion, and affirming HIV positive media figures. In order to move forward their social activities have to be able to go back to normal even with their new identity.

 What these youth have found helped is advocating for others and becoming role models themselves.
I agree with this whole system, since the youth are taking their status disclosure and education into their own hands. They become aware that they need support and more services than what is present, but are working to get the community involved in order to continue education and increase a better quality of life.

Overall, this was not the type of panel I was expecting, but still provided interesting information, especially on community based programs for youth living with HIV. What I did find intriguing was the concept of HIV positive media figures being positive role models. That could definitely make a different in a youth's life if there is someone on the big screen that is similar to them.

Jamar Rogers & I

Jamar Rogers & another youth leader, Jeannie Cooper

Which leads into an awesome event that happened at the conference this day as well. Jamar Rogers (from The Voice, Season 2) was actually AT THE CONFERENCE! He performed on stage in the Global Village, then attended the Red Hot Party later in the evening. I was stalking him all day to try and get a picture, and finally I caught him at the party. I was so cheesy. More on point though, he is a media figure now who is open about his status and background, and that appeals to young people. His story is a preventative tool, but also a normalizing tool for youth living with HIV, they can feel less like a shadow or alien on earth if a wonderful person can be so open and successful in the public eye.

Post: IAC (Second Day of Panels,1)

Tuesday, July 24th, 2012

Everything You Have Ever Wanted to Know About Safe Sex: Safe Sex & Pleasure:

Waking up at 5AM for this panel was NO BIGGIE! Right from the start I woke up during this panel, and knew that I was going to have a better day with panels today, I felt it in my bones!

The panel was put together by the Pleasure Project (www.thepleasureproject.org) along with DKT International (a condom corporation) representatives, academics and intellectuals.

Chris Purdy (DKT International) had a slideshow of fun condom ads. He stated how the corporation is using pleasure to sell condoms. They are moving away from fear based messaging and promoting safety as FUN!

Daniel Marun (DKT Brazil) gave some background information on the corporation. (www.dkt.com.br)

• Prudence (the DKT condom brand) started in 1991
• The female condom came out in 1997.
• Colored and Scented (2000)
• New Female (2005)
• Lubes (2006)
• Toys (2007)
• Redesign and Brand relaunch (2008)
• Performance Condoms (2008)
• Color & Taste (2010)
• Polyurethane and Latex Female Condoms (2012)

DKT's stance is "Pleasure starts when you use the RIGHT condom for the RIGHT situation." This is why the corporation introduced a new variety of condoms.

There has to be a change to make people TRUST condoms, possibly introduce condoms into foreplay. Another crucial point is marketing ORAL SEX as SAFE and SEXY. (see first ad)

Bonus info: DKT was first to put a condom ad on television in Brazil, but it is only allowed to air after 11PM.

DKT was also going to place billboards around DC featuring their "sexy" condom ads, but ran into some controversy with a local church.

Lori A. J. Scott Sheldon (USA): Erotisicing Safe Sex Study

15-24 year olds are the largest age group for HIV transmission. Sheldon promoted targeting risk groups, and one major group that rarely comes up in studies is African American Men who have Sex with Men (MSM)

The question of the study was, "Condoms + Pleasure = Safer Sex?"

The first amount of data collected was based on the question "Why aren't condoms used?"

The responses included: Less sexual pleasure, loss of intimacy, association with disease.

Eroticization included: visuals, instructions, and activities (roleplay)

In conclusion, the study did show that eroticization of condoms and pleasure did increase safer sex practices!

For the future there needs to be more studies with at-risk populations and more details on the amount and type of eroticization described within the studies.

Well there you go! Some research that shows making condoms "cool" increases usage! Let's keep up the good work!

Tsitsi Masvawure (Zimbabwe): South African Girls & Sex Narratives

Masvawure discussed the two narratives that surround young, unmarried, African women. There is either abstinence (if you are a young, unmarried, female you shouldn't be having sex), then there is men forcing sex upon young women.

Literature portrays females as uninterested in sex. There needs to be promotion of women saying "yes" to sex without force, a new narrative.

Through Masvawure's discussions with young women she found that those who are having sex are trying to take and keep control over their sexual experiences.

"We need to let women make their own sexual choices; When, Where, How."

Well said! This is progress and we need to keep up with pushing for women in control of their own sexual and reproductive health.

The panel ended with a personal message from Gary Dowsett (Australia). A quote from him that I enjoyed was, "The Choreography of Sex: Sex is a messy busy." He went on to fill in the message stating how in order to make safe sex work there needs to be ideas that think out of the box and also of the natural body function of people during sex.

Make sense, can't argue there.

Overall, a colorful and intriguing panel! You can't go wrong with making Safe Sex "Sexy" (while there was some debate with the question and answers on what "sexy" actually is, I feel that is more a social change we need to make). I did walk away from the panel thinking, "Hey, I like DKT's message, maybe I should work for a condom company." But... that is just me still trying to figure out my life.

I'll leave you with this fun ad. Stay Safe Everyone! 

Post: IAC (Second Day of Panels, 2)

Tuesday, July 24th, 2012

Couples, Families, & Transmission 

Yes, I am aware I am only 20 years old, and still in a fairly new relationship. But I am also a planner. I need to know what I should be aware of for my future and whoever else is in it.

I wanted to find out who do I talk to in my life to plan for a family, how can I stay safe within my relationship, what are my options, etc.

This is very much for the future but this is what I do! I had to find out!

I plan, I schedule, and I prepare! 

(There was a long line up of presenters, so they were all pretty quick and to the point).


Sarah EK Bradley presented information on couples in Mozambique.

• 1/10 couples in Mozambique are sero-discordant (one partner is HIV positive, the other negative)
• 1/3 HIV affected couples are concordant (both partners have HIV) 
• Condom use within couples is very low, unless partners have become aware of their status.

Alright, thank you, Mozambique. I guess promotion of HIV testing within couples is needed in order to decrease transmission?

Here is where I got really excited...

Shannon Weber from The National Perinatal Clinicians Network in San Francisco presented next.
This network has created a HIV Hotline (1-888-448-8765) that provides conception options for HIV sero-discordant couples in the United States!

Finally, the beginning to finding out answers to my future questions and issues!

The network helps couples gain access to clinics, information, and informs the couples of their reproductive rights.

With 140,000 heterosexual HIV sero-discordant couples in the US, I was so happy to hear about this network and hotline! A solution has been put in place, and I hope it will have expanded greatly by the time I have to use it.

(After this presentation I could have just left... but like a good delegate I stuck around and continued to scribble down some notes about couples in other countries)

Dunja Nicca (Switzerland) stated that the trouble with some couples is that the HIV negative partner has some uncertainty or misinformation about the HIV positive partner. There are levels of how the partners interact with each other based on their comfort levels and education.

1. Condom Commitment (trying to stay sexually safe, fully prepared)
2. Rule Commitment (figuring out ways to stay safe without always using condoms)
3. Flexible Adaption (strategic with safety as new information is released)
4. Incongruous Adaption (don't discuss, sexual risk taking)

 Well noted, Switzerland! Couples need to discuss all aspects of the relationship. Communication is key even in a non sero-discordant couple! (SMART Youth's Healthy Relationship Workshops have taught me well) ;)

Kimberly Powers spoke about transmission in Malawi. She brought up a term "stable couples", these were couples within the HIV discordant group that... actually the terms for what made them "stable" wasn't quite clear. I believe it is the fact that the negative partner has stayed negative for a certain amount of time, and they have preventative measures in place. The question of "What are their prevention strategies?" came up in the conclusion of the presentation.

Pamela Kohler discussed PMTCT (Preventing Mother-to-Child Transmission) in Kenya. The improvements for Kenya's PMTCT community included: more partner involvement with PMTCT uptake, as well as efforts to increase ARV uptake during delivery are necessary.
 Short and to the point, got it!

Maureen Chilila presented a study in Zambia that showed how couples counseling increased ARV uptake by pregnant women.

• There is a 14.3% prevalence rate, of this percentage 16% are pregnant women, then of this percentage 63% of the women are provided with drugs for PMTCT.
• Only 10% of couples text together. 

The improvements shown through this study is for national encouragement of male involvement for PMTCT. This sounds like a great plan! It takes two to tango (AKA make a baby) so... it should take two to keep that baby healthy!

Overall, I did walk away from this panel with some information that is pertinent to me and my future. Some questions were answered- or more likely will be answered when I come to that point in life.

My one critique is, and this isn't necessarily for the panel specifically, but why is it that the International AIDS Conference is being held in the USA for the first time in... 20 years? And... I am just now hearing about some strategies for HIV positive people in the US at this conference?

I know HIV in the US isn't the top country for the pandemic, and that this IS an INTERNATIONAL conference, but... it IS in the US, how about a little more info for the delegates that are based in this country? Maybe I wasn't attending the right panels...    
 

Post: IAC (Second Day of Panels, 3)

Tuesday, July 24th, 2012

Disclosure: School & Work 

This is where is starts to get really personal. I will not reference the speakers names in this panel since it was their choice to disclose in this venue, they did not agree to have their names in SMART Youth's blog.

Now I was sent an email before the conference about this first workshop in a two part series of discussions around disclosure. This gave me ample amount of time to get excited for this workshop that would give me tips on how to address disclosure, and possibly show me if my past actions were the best for a certain situation. I was sure I would be prepared. I mean I've dealt with disclosure on so many different levels (strangers, friends, media forms, etc.) I had been prepared more for a lesson (like so many previous panels) that when I got a down to earth disclosure panel, when I heard the 5 panelist discuss their status and stories, I went into shock.

I don't know what came over me, but as soon as I heard two of the panelists talk about their experiences actually GROWING UP with HIV, I found it hard to hold my pen.

I was struck. Their stories relate to mine. I've always known there were youth like me, but now there really were YOUTH LIKE ME, here, in front of me.

I wasn't prepared. Far from it. The thought of rushing out of the room because of the frog starting to crawl up my throat was overwhelming, but I NEEDED to sit through this panel. I needed to hear more. I needed more proof that I truly was not alone with my story.

As the panelists continued to weave their stories into the tips and suggestions of their slide show, it was getting harder for me to suppress my emotions.

All I could think of as I heard their stories of disclosure were my own stories. Telling friends, and other people in our lives was never labeled as "disclosing" in my head. It finally had a title, and that tile definitely added some weight to those experiences as I thought back on them.

I have probably disclosed in every way, shape, and form.

The late night texts/emails/chats, on camera, in articles, over the phone, face-to-face, or someone else  disclosing for me.

Every ounce of anxiety from those situations was creeping back into my body. I desensitized myself to disclosure and at this moment it was crashing down onto me like a tidal wave.

Now I wasn't in my head the whole time for discussion. Far from it. I did manage to take some helpful notes about disclosure within school and the work place.

When disclosing to an Authoritative Figure in School, think about the WHYS:

• Support/Understanding
• If any health complications arise, you will have help
• Help with studies

When disclosing to friends/classmates/roomies/peers, think about the 5 W's:
Who, What, When, Where, & Why?

When disclosing to an Authoritative Figure at Work, think about the WHYS:

• Support/Understanding
• Flexibility in work schedule
• How to address work-related injuries

When disclosing to co-workers and peers, think about:
What are the pros & cons of disclosing to these fellow workers?

In conclusion, a quote that came from the panel was "Take Power & Ownership of Your Status, We are NOT HIV."

It really drove it home for me. The question and answer period from the audience was also very enlightening. I actually heard a story from a young women that sounded EXACTLY like mine, perinatal infection, and the only one out of her two siblings. I was sold. I was meant to stick it through this discussion, I was meant to be there. This was it. I finally found my answers.

I had been feeling so lonely, or more so, alone in the world of HIV. I have a great support system, I have friends, family, just wonderful people in my life, but none of which could answer the questions that have been brewing in my head about growing up and maturing with HIV.

I had to talk to this girl before she left the panel. I wanted mentors, and there was one who has just presented herself. (One of the panelist I had been in contact with a while back, but we have never crossed paths- I needed to get the audience member because I knew she would get lost in the crowd of the large conference.)

 I took deep breaths. In my head I was fine. I prepared in my head a little speech of how I would introduce myself, how I would love to stay in contact, how happy I didn't feel alone anymore.
Needless to say, the speech did not happen. I caught the girl and as soon as I opened my mouth I went short of breath. I uttered words that I never said before, "I've just never heard another story like mine..." and then it was over. The levees broke. I choked on my words, the tears were coming. She comforted me, gave me her contact information, and I ran off to the bathroom.

I had an interview right after the panel so I needed to get myself together. I stared in the mirror, a total emotional, sobbing mess, and tried so hard to tidy myself up. It was no use. The more I tried, the more I cried.

I wasn't even crying because I was upset, or sad, I was just... overwhelmed--- in the most positive way I have ever been overwhelmed. I found people. I belong. I'm doing something with my story, but I don't have to be alone. I can finally have someone to talk to about the big questions on relationships-kids-the future!

I cried because it all changed for the better at this moment. I would become a new person.
This was not all coherent in my head, or in my words when I finally had my mother rescue me from outside the bathroom. At that moment, I really needed her, and she was there, and I knew it was all going to be alright... once I wasn't waterlogged.

Of course, with my luck though, two of the amazing panelists went into and left the bathroom. I pointed them out to my mother, and as they exited to head back on to their daily lives, my mother did as mothers do: introduced me in my sobby state. (I Love This Woman!)

It was fine, I murmured some words on how much I appreciated the panel, and tried to articulate what the tears were for, and wound up getting the contact information for the panelist I wanted to talk to after the panel anyways.

Quick and painless. Hugs to go around. It was an awakening, revelation, just one of THOSE moments.

So here I am. Taking Power and Ownership of MY Status.

You're not getting it from a school poster, or from another to you, my mother to you, someone else to you; you're not getting it from a magazine, article, or documentary.

You're getting it from me. Maybe not face-to-face, but these are my words.

My name is Christina Rodriguez. I am one of the co-founders of SMART Youth. I am 20 years old (21 in November--- If you're curious). And I was born with HIV.

I know this opens me up to some tricky situations, but as stated before, my support system is one of the strongest I have ever seen.

Disclosure isn't new to me. This is just me finally making it mine.
Any questions, I'm an open book, please ask.

On the Metro with my very good friend from HS after the Red Hot Party!

 

Post: IAC, Youth on the Bus: Harold

Wednesday, July 25, 2012

A good friend of mine, Harold, took the opportunity to see the International AIDS Conference on the day SMART had there bus ride.

Here is his take on the conference.

(Disclaimer: He is not from the UK, he just likes to use Lad and Lass)


Interest

Honestly I have no clue how I get myself involved in these trips on the east coast to experience movements and conferences; but one thing is always certain, my camera is definitely within my grips. To be completely honest, I always felt that I had little to no connection at all towards the HIV/AIDS issue, or so I thought. Due to meeting a few people affected by the virus, especially thanks to one young lass, I suddenly feel enveloped in the subject.

To be more specific I’m interested in the criminalization issues concerning how countries persecute and/or treat victims or infected folks that have contracted deadly viruses and bacterias. To see what those in power are willing to do to preserve themselves is quite remarkable, sad, but still remarkable, even more so when you’re able to capture that moment in an image.

The Trip

I traveled as a guest with the organization SMART Youth to attend to the International AIDS Conference, in Washington D.C. I think one of the most memorable parts of the trip was the bus ride itself. (Seeing how we spent most of the day in that bus, seems logical)

I met the most intriguing of characters in this bus, and I must say I really am happy I decided to get up that morning to do so. It was aprox. a five hour trip with five lads and an army of… lively woman! Talking to these women on the way to the event and even on the way home really humanized these issues; issues I’ve studied and heard so much about concerning the virus.

The stories, hardships, and that determination to do something about this disease that have snatched the lives of so many really hit home. Rather than moping around feeling sorry for themselves, they act. Which can not only have the potential to move mountains- but people that actually lend them their ears for just a second and process what emotions they had to endure and still endure. It’s not one of those moments where you feel sorry for them and move on with your daily lives, instead these were stories that inspire and cause one to really value every spec of health you may possess, and ask yourself why, and be grateful. Suddenly you feel like doing something about it; which you as an individual can and should. Of course that’s why SMART Youth was established.

Arrival

When we arrived with our sore rumps and backs due to excess sitting, we made our way to the “Global Village”. I can’t help but feel, and excuse the insensitivity, but as if I was a Comic Con… but for AIDS. It had that exciting atmosphere, which is good (hopefully that last comment put me in the clear). Sadly… there was very little to shoot with my beloved camera. So I was given a grand tour by a very busy young woman, who had my complete attention. Seeing how I was mostly interested in the Arts in the event she wisely took me to the best locations exhibiting them. Honestly, I wasn’t expecting to see such beautiful works of art for whatever reason that was, but I did and it made the trip a greater one.

Photos

The top two photographers that had me in a good trance were Cameron Wolf and Misha Friedman. Cameron Wolf had stupendous shots of young men in the shots named “The Lotus” and “Vishnu Garuda”. Though they were more on the fine art department of photos they were still intriguing. The lighting, the subject themselves, and the action was all splendid. If I had more time I would have attended an event that they held with Wolf. But we don’t always get what we want, now do we?     

Next up is the mysterious Misha Friedman,  a photographer whose photos are my cup of tea. He doesn’t name his photos but that’s even better. It makes you name them yourself, thus making it have more of an impact and causes you to remember the image and the feelings it invoked. Misha’s photos were of a series of how Russia treated patients with TB, HIV and AIDS. They were taken with B&W film and some digital by what I can tell, of course taking it in B&W makes it more dramatic. One shot in particular caught my eye for simple reasons. I called it “The Nurse”. The lighting, the shadows, and the atmosphere that was captured within this shot… it’s just amazing. You really feel like you’re in a cold place. (Russia!) You ponder what the nurse is holding in her hand, what type of files are those? How is it categorized? Why is it being placed in a corner? Is it being placed in a corner? Does the nurse sympathize with the patients? OR is she the nurse that raises hell?

The next image was used as an ad for a screening at the Global Village the day before I arrived. A really emotional and powerful image, and to top it off it has the word “Undefeated” as if the image wasn’t enough.  Guess it’s a movie or documentary on the life stories of young people, one in particular and I’m assuming it’s the girl in the photo. The story goes:  She lives in London and is caught in a dilemma with a school secretary who exposes her secret (her having the Virus). Now she has to face her future, her friends, and herself… something I can imagine all who have this disease must face.

Thoughts

So here I am, today, (August 9th) at five in the morning, wondering what more can I say.   I wanted to write how I bumped into an old colleague at the conference and how by bumping into him I was able to snap shots of Juanes (A well-known Colombian singer) but it feels irrelevant for some odd reason.

I always lived life behind the lens. I’m there, but not emotionally. I see, but I don’t do. I wanted a subject to cover and I think I found a lead… thanks to all this. Despite my change in major with school, I still want to document stories with this camera and have it accompanied with words. To tear down these drapes of fear and unravel the minds of those who do not understand because of lack of knowledge. Those less informed fear and they react… let alone if it doesn’t hit home to them, it’s normal really. With an image you can tell a story, and with a story you can teach and share an experience that could change a life or two and cause a dominoes effect.

These people that I have met, this one girl that lives on with struggles and keeps on going well or not… moved me. Me, a man who I have always considered to be an insensitive and cynical person, has made me value my time, my health, my surroundings and those who I keep close. Most of all, they have embedded this new sensation to teach and inform. Either when I jump in that Ambulance or come out with my camera… I know this feeling will accompany me.        

Wow. Didn’t intend to get all sappy there. Bottom line is, I gained something irreplaceable by informing myself and humanizing the virus. I have a new motive to achieve. I have heard stories that I am sure I won’t forget anytime soon. Above all, I have found a new sense of compassion of all those men and woman who carry a heavy burden and still manage to see a positive out of all the pain and still try to aid others so they may never know such pain.

Though I may not have this virus, I’ll certainly do my best to do something to aid those in need against this deadly foe or any epidemic. Inform, teach, listen, follow and if you’re up to it lead. Never judge and never falter.

Post: IAC (Third Day of Panels,1)

Wednesday, July 25th, 2012

Disclosure: Relationships

I only planned on attending one panel for this day since the SMART Bus would be arriving mid-day so the women and youth of the programs could come see the International AIDS Conference. I had some buddies coming down on this bus, so I wanted to make sure I had enough time to spend with them before they got back on the bus to New York City.

Since this was the second (and final) panel about disclosure I needed to make time for this panel as well. Not only because the first workshop was so inspiring and life changing, but because I'm in a relationship... to put it simply.

I was curious as to what I should think about, what I should discuss, if I've covered all of my bases.
(It's only been a year, so I know there is a lot in store for this relationship... but I just wanted some reassurance that I am on the right track).

During this panel they presented more slides than the last one. Each panelist took a different stage of "Relationships", spoke about the notes, and gave some summary on their own experience with disclosure to a significant other.

Stage 1: Getting to Know Each other
I have to admit, I ran a little late (blame my buddy) and only came in at the end of this part.
I figured this was the "more than friends" sort of stage, feeling the other person out, and trying to figure out if putting in more effort is worth the time.

My boyfriend and I were in this stage for around... 7 years... so... I think we had a pretty good handle on what could come next.

Stage 2: Dating
Then here is where the anxiety-inducing stuff comes in.

Reasons to Disclose:

• Ready for sex
• Partner questions
• Emotional support

Dual Disclosure was a new term but not a new concept that I learned at this point. This is when while disclosing your HIV status you also have to disclose your HISTORY. This includes (but is not limited to), Mental Health, Sexuality, Gender, Drug Use...

Along with this also comes the discussion of your family and their experiences.

Pre- Disclosure:

• Establish trust & respect
• Prepare for rejection
• Create a disclosure dialouge
• Support System

Think about:
What are you going to say?
What do you want them to know? (about HIV or in general)
WHERE? & WHEN?

Now, I've encountered all of this, but never realized I was DUAL Disclosing. It is true though. Disclosing isn't just saying, "So... I'm HIV Positive".

Disclosing is swallowing the knot in your throat, sweating profusely, heart rate increasing, deep breaths, and hoping it all turns out okay, then saying,

"So... My father contracted AIDS probably through his drug use and infected my mother. Both were unaware of their statuses until he finally got very sick and was tested. Then my mother, myself, older sister, and younger brother were tested. I was the only one who came back positive out of my siblings. Oh, and by the way, when I was a junior in high school I went through a depression, skipped on my medication doses and hid them in my sock drawer."

Seems so easy when written, right? Trust me, it is not. It has taken me around... four years to perfect this mini paragraph, and every time I have to tell someone face to face, it never comes out this articulate.

Well... my relationship was a little different... we weren't exactly in the "Dating" stage when I decided to disclose to him. Actually, I hadn't talked to him in two years... and we were just meeting up again... and I decided that after 7 years of "knowing" each other... I should probably get this thing over with.

I thought about it for weeks before our "hang out" session was set for. I couldn't sleep. I couldn't eat. I had anxiety attacks out of nowhere... I was freaking out.

I decided I would write every detail in the most coherent order on index cards, and then use those as my reference points when I finally had the nerve to say it.

During the ride to meet him, I remember as I was traveling from the stop before his, sounds started to drift away, all I could hear was my heart in my chest. I was starting to get hot (in a fully air conditioned train car). I wanted to world to swallow me whole. I wanted to go back home. I wanted to run away, turn back around, and forget this situation altogether.

But... I didn't. This was one of my biggest disclosing challenges, and I had to face it and finally see what happens.
I had it in my head that if he reacted negatively, I'd simply just leave, and that would be the end.
I had no idea what would happen if he reacted... positively...

We sat in his room for almost two hours as I tried to avoid the conversation completely.
After his pestering, I couldn't avoid it much longer.

I retrieved my index cards from my bag, avoided eye contact, and tried my best not to feel like vomiting.

I didn't get around to reading the cards, I just blurted and rambled, and tried my best to say everything and make it all clear. I just started tearing the cards up slowing into my lap as I fumbled.
After it was done, we sat in silence for what seemed like forever.

And then he just asked if he could hug me... and... then I didn't get home until 4 AM.

How I disclosed to my boyfriend would go under the list of "Safer Disclosure"(yay!), but I am a culprit for disclosing in "Less Safe" ways: :(

• In Public (Starbucks...)
• Text, email, phone (Text, email, facebook chat...)
• When there isn't enough time for questions (NEVER)
• When you have feelings of guilt, depression, or insecurity (Well... disclosing just makes me feel sad)
• After intimate actions (Nopes)
• After a fight (Nah)
• Before breaking up (Only have one boyfriend before this guy now and I disclosed while we were friends. My mom said, "It's better to lose a friend than have your heart broken.")

 Post-Disclosure:
Make sure to have resources, answers to questions that may be asked, and your support system ready for anything!

Stage 3: Intimacy
Before engaging in this part of the relationship, consider:

• The expectations of the relationship
• If it's a Mature & Thoughtful decision
• If there is a mutual understanding

The key is to keep your partner negative (if that is what their status is) so this means SAFE SEX!
There is a spectrum from No Risk- Minimal Risk- High Risk

No Risk includes: If it's used for SAFE SEX then you use it, having and undetectable (less that 20) viral load, and knowing the facts

Minimal Risk includes: Using condoms, certain sexual acts pose less risk of transmission than others
High Risk includes: Inconsistent use with condoms/ unprotected sex, and any other way of transmission (This is not very thoughtful!)

Sex is scary in general (well in my opinion at least), adding in the risk of HIV transmission (even any other Sexually Transmitted Infections) just makes it an unappealing act overall.
Safe Sex, Safe Sex, SAFE SEX!

Stage 4: Long-Term Love
This is when the relationship is two or more years.

The couple is continuing to reduce the risk and makes testing a routine.

There are other components to making a relationship work than just the HIV aspect.

At this point in the relationship the discussion of family planning may come into the picture.

So depending on if the female or male is infected this can mean:
Female: Trying to reduce the risk of Vertical Transmission (Mother-to-Child)
Male: Trying to reduce the risk of infected partner and child (during conception)

A tricky area. Especially for me since I have not been surrounded by the information of how to get preggers without putting my partner and child at risk.

Again, I am only 20, this is not the information my doctor cares if I know about at the moment. There are other things on my plate. But I am the type of girl who likes to know in advance what I'm getting myself into before any future decision is made!

That is beside the point though.

Long-Term Love is self explanatory. The relationship is working because there is communication and most importantly, LOVE!

So that is how the panel ended. It was fun to hear all the other relationship stories from the panelist. Especially the last panelist who has been with her boyfriend for 10 (or 11?) years! It gave me hope... I still get anxious about whether it is worth it for anyone to stick around with me since I seem to have a complex situation. But if her boyfriend has been with her for basically a decade... then maybe... maybe I can actually do this... maybe it really doesn't matter that much.

Maybe The Beatles really did get it right, maybe "All We Need Is Love".

Just some guy I thought was cute... Just Kidding! Yeah, It's my boo.

  

Post: IAC (Third Day of Panels, 2)

Wednesday, July 25th, 2012

Community Support to End Vertical Transmission

Now, if you've read some posts before, you are aware of why I felt the need to attend this panel.
Community Support also caught my attention, I figured it would be more down to earth than a regular research panel.

Unfortunately, I didn't stick around long for a few reasons.
1. As soon as the first panel started I knew this was (again) not the type of information I was looking for or thought I would get when I sat in the room.
2. There would be no presentations on information for the US
3. It was at 6:30 PM and I had been up for a bit (And the bus people came)
4. I really had to go to the bathroom
5. Mom was taking my wonderful co-facilitator and I out to dinner

I will summarize and try to provide you with as much information that I did obtain.

Beatrice Chola (Zambia): Prevention of Vertical Transmission of HIV in Zambia

In the age group of 15-49, 14.3% have HIV.

16.1% of HIV infections are women.

Vertical Transmission is a major mode of transmission in Zambia.

Solutions that have been enacted, and still need to be enforced include:  (Biso Program)

• Inclusion of MEN
• Helping women go to clinics (stay on treatment for self and child)
• Enforcing Pre-Natal Care (monitoring the CD4 count of the mother, treating mother, and monitoring the pregnancy)
• Enforcing Post-Natal Care (Alternative Infant Feeding options, providing mentors with new mothers)
• The creation of a holistic approach (including nutrition, cooking, and hygiene)
• Providing income generating activities (business skills & training)
• Providing support for children
• Enabling psychological support

A major dilemma with the Biso Program is that there are limited alternative infant feeding options. This is a crucial point since transmission risk doesn't end with the mother just giving birth, breastfeeding is a mode of transmission. Tricky & complex business here...

Overall, I'm sure this information was more influential to someone else in the room, and it was interesting to hear about a community program, but I guess I need something a little more personal and that I can relate more to.

I think about Vertical Transmission a lot (yes, even though I am not giving birth any time soon). I more think about it because from what I do know, in order to reduce risk of mother-to-child transmission, I would have to have a C-Section, and not breastfeed. It kind of bums me out since everyone is always talking about the "natural way for birth" and how it's better for the baby. If I become a mother I definitely want to do what's best for my baby right from the beginning, but unfortunately that includes having the child cut out of me.

The breastfeeding... this is EVERYWHERE now-a-days. "Breast is Best". But again, I won't be able to provide those nutrients to my baby without risk...

Maybe when the time comes some new advances will happen and I don't have to worry about these precautions. But for now... if I want to keep vertical transmission at a low, then I have to keep these facts in mind. 

Post: IAC (Last Day of Panels, 1) END

Thursday, July 26th, 2012

Sex, Sexuality, Society

I only chose one panel for this day. It was the last day and I wanted to make sure I was contributing enough time to the "SMART Youth: I Love Safe Sex" booth.

I chose this panel because it sounded interesting. I love to hear different views about sex and sexuality within society. How people get engrained in their heads certain image and views is intriguing to me.

Now, since this panel was in the Youth Pavilion (like the Disclosure ones), I knew it was going to be... colorful.

It did turn out to be more of a workshop than panel, which is totally fine by me. But it also seemed like one of those presentations you get in school. Then it seemed like a discussion of topics I easily bring up with my friends, family, and anyone who likes to discuss the establishment of society with me.

 It started like this:

What is Sexual Pleasure?
Everyone in the room wrote what they defined sexual pleasure as on a little piece of paper, rolled it up, and tossed it in one of the presenters long skirt.
Once everyone was done, the presenters took turns reading aloud peoples descriptions.
It ranged from: cuddling to biting to grinding to multiple orgasms.
Awesome. We all have our thing.

The big question brought up was, "What are the rights for sexual pleasure?"

From a public health point of view the definition of sexual pleasure entails:

• Responsible behavior
• A healthy lifestyle
• Knowing the risks and how to stay safe
• Morality & Ethics

The Sex Industry exists because people have gotten pleasure and enjoyment out of these "categorized" sexual acts and get to live out fantasies.

Porn can create insecurity within "average" sexual beings since the clips put pressure on acts not on screen to be as clean and successful as the ones taped.

Sex has its history. It hasn't always been "scandalous". "We exist because of sex!" said one of the presenters.

Good vs. Bad Sex
This also breaks down into "normal" and "abnormal". The societal views of good and bad sex almost always break down into making heterosexuals "normal/good" and any other gender and sexuality "abnormal/bad".

There was a quick slide show on myths the presenters found online. Then discussion on how we need to educate more in order to debunk these myths so they don't continue to misinform youth.

Romantics vs Realists: On Love & Sex
There was a comparison between the extremes of how people think when encountered with the topics of love and sex. Romantics seem to feel passion (sex) must stay present within the relationship or else the relationship must be dead. Realists seem to believe that passion will falter, if the love is strong enough then that is really the base for a fine relationship.

I'm not sure where I stand... I believe has to be the firm ground, but without passion... days may start to seem routine.

What do you think?

What is "Sexy"?
What does the media's version of "sexy" help or persuade average people?

"Roll & Rock": Roll one on (a condom) before you Rock.

The presenters then gave their shout outs to The Pleasure Project, who is trying to encourage education on safe and fun sexual pleasure.

Overall, a cute workshop. A nice end to my International AIDS Conference experience. Who wouldn't want to end their day talking about heavy topics like sex, sexuality, and the twist domain of society.

I'm always happy to see people talking about it, since they are three of my favorite topics to discuss, and also three topics that seem to always have controversy around them, and with changes to be made.

There you have it. The conference life of Christina Rodriguez. I hope you became informed and weren't completely bored.

Keeping checking back for updates and supporting SMART Youth!
We Rock! (And you can too)