“We are human too!”

This post was written by our BLC intern, Anita Peete.

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I had the pleasure of sitting down to talk with one of the Boston Living Center’s longtime members. This member did not want their identity to be disclosed, but as you read the conversation you will see that they had a lot to say. For privacy purposes, their name and any other identifying information has not been used.

How long have you been positive?

“I was diagnosed Jan. 8th 1992. So that makes it 14 years.”

What was your reaction?

“I wasn’t surprised or shocked. I was scared for one thing. I was dating someone and I didn’t want to tell him. I cried like a baby when I was told because I was hurt.”

What motivated you to keep living after your diagnosis?

“My family.”

How did your family react to the news?

“My family was very accepting and understanding.”

Do you remember the first person you told?

“Yes. The guy I was dating.”

You have been living with this virus for 14 years, what keeps you going?

“God’s blessings. This is my second chance at life. Being a recovering addict and also being diagnosed with HIV, how is that for a hell of a combination? Life itself [keeps me going].”

What are you hopeful for yourself as well as for the future of the virus?

“I just plan to keep on living. I thank God for every day that I am still alive. I hope I can live to see a change when it comes to HIV being so stigmatized. We get looked at like we are a walking disease. They don’t twist cancer or any other disease. But as soon as you mention HIV you are looked at crazy.”

What are some words that you want to leave with those who read this?

“Understand that we are people too. We have feelings just like you do. Don’t look at us any less than you would anyone else. We are human too!”

**Anita’s note**: There are a lot of people that do not experience the support and love of family members like the member interviewed here. I am hopeful that one day families and friends will obtain the necessary knowledge so that they can fully support their loved one that is positive. As a community, it is our job to continue to speak up and speak out on behalf of those who are positive. We must educate those who do not know, so that they do know. Education is key!

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A Final Word From Tia

Did you know that African Americans have been estimated to have 44% of all new HIV infections? Men in general have been estimated to have 70% of all new infections. For some reason, these numbers did not surprise me – they instead made me think of questions such as: why is the black community at higher risk of getting infected? Is it based on our history?

The first day I arrived to BLC, Morrigan, the program director, sat me down in a room with paper, packets, and articles on HIV. She wanted to make sure I understood and was familiar with HIV and how it is impacting our community. A lot of the articles I read were survey based and showed the same conclusions.

African American male youth age 13 -24 was estimated to have over 5000 new HIV infections, the highest amount on the bar graph in the article I read. Hispanic / Latino and white males followed behind them with about 2,000 new infections, less than half of an African American male. Then came the woman; although African American females had only one forth new infections compared to an African American man, when compared to females of other races their number was about five times more.

The fact that African Americans are leading with the highest new HIV infection relates back to history because HIV is not the only thing that affects people of color. They have to deal with things such as: high rates of poverty, stereotypes, and lack of access to resources. African Americans have been on the bottom of the socioeconomic ladder for years, starting with slavery. That was a time when they were not only dehumanized but had to step up and prove their worth. Racism and negative stereotypes arose and have followed them for centuries. Also for some people of color trying to access resources for HIV can be problematic, especially if they are either homeless, ashamed of their sexuality, or uneducated on the virus.

After reading the articles those thoughts were my take aways; however, I wonder what others’ initial thoughts were as well. Why do you think African Americans are leading with the highest new HIV infection rate? Is it based on history ? How can the community and organizations such at the BLC contribute? These are questions we need to answer and discuss in order to bring awareness and help lower the HIV infection rate for people of color.

 

ALL THAT “JAZZZ”

This post was written by our BSW Intern, Anita Peete

“Not to fear it. Try to understand it. Accept that it is among us. The best way to fight it is to come together.”

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While here at the Boston Living Center, one of my main goals is to get to know members on a collective level; but even more on a personal basis. In order to fulfill this goal I sat down with a member of the Living Center named Jazzz. It was a pleasure to have the opportunity to get to know Mr. Jazzz, with an extra “Z”!

Jazzz is originally from Lewiston, Maine. He lived there until the age of 19. Jazzz has been a member of the Boston Living Center for the past 4 years. Although at first he wasn’t interested in coming to the Center, even after knowing so much about it; he came to the realization that it was “difficult to maintain the day to day routine.” He needed the support of those who fully understood what it means to live with this virus. No one understood what he was going through, so he came to the Center in order “to be in touch with the community. Those who were living with HIV.” Other ways that Jazzz works to maintain his life on a daily basis is through various hobbies. His hobbies include writing poetry and short stories, painting, being a member of the acting group. He also loves traveling, especially international travel. He has been to 5 different continents in his lifetime. He even had the opportunity to study in Mexico.

Just like the music, there are many levels to the person that is Jazzz. I discovered that he recently retired from teaching in the Boston Public Schools after teaching for 27 years. He taught everything from general education to Bilingual education. Yes! Bilingual education! Jazzz is fluent in Spanish! His best advice when learning Spanish is that you go to a Spanish speaking country and immerse yourself in the culture to learn the language.

Jazzz is a very vibrant and well-rounded individual. It was a pure joy to be able to sit down and get to know the wonderful soul that is Jazzz, with an extra “Z”! In closing, I asked Jazzz what he wants the world to know about HIV and those who live with it. His response was “Not to fear it. Try to understand it. Accept that it is among us. The best way to fight it is to come together.” Americans as a society has been known to come together in order to fight injustices, so it is important that we continue our fight against HIV, so that we can get to zero! It is because of the brave men and women, Like Jazzz, who share their stories that others are able to start to tear down the walls of stigma.

 

 

The Power of Support

This entry was written by our BSW intern, Anita Peete

For good ideas and true innovation, you need human interaction, conflict, argument, debate.

-Margaret Heffernan

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The Boston Living Center is a place of comfort and support for so many people. The Center holds so much value to those who utilize the many services provided here. This is the one place that many of the members are able to find a sense of peace, hope, happiness, or joy. This past month that I’ve spent at the Boston Living Center has caused me to re-examine what life is all about: enjoying the many moments we experience with others.

The members come to the Boston Living Center because they are in need of support around situations that are occurring in their lives such as homelessness, medication adherence, relationship issues and other various pressures, but it is through groups like Bridges, G.L.E.M (Grupo de Latinos en Movimiento), meals, pottery class, beading class and so much more that for that moment the pressures of life do not exist. There is so much that impacts an individual that is HIV positive. This includes stigma, discrimination (although we want to believe it doesn’t happen anymore), the inability to work because of their illness. All of these situations have a major impact on how an individual who is positive views life, but when you have a place of support such as the Boston Living Center you are more likely to progress in a positive manner. Research shows that support groups and a strong support network helps individuals thrive. You are in a group with other people who are going through similar situations, and this is very important when it comes to those who are living with HIV. When someone is diagnosed with HIV, they may begin to isolate themselves or be ostracized by others.

I have witnessed this on many occasions, especially attending Bridges. While in Bridges, I have noticed the weight that is lifted off of so many members as they share and receive feedback from their peers on their struggles. It is moments like this that I am forced to enjoy. The overwhelming feeling of community here at the Boston Living Center is great to witness. There have been many times when I have seen small gestures of help being given, such as a member needing help carrying their take out downstairs and another member is quick to assist them.

Our daily interactions with others are vital to our continuous growth as humans. The strengths perspective is a theory that all individuals have something that is positive on the inside or around that can be used as motivation. A strong support is often an overlooked strength for individuals. The Boston Living Center is a part of many individuals support system.

There is power in our interactions that cause us to feel hopeful, appreciated, grateful or thankful. We are motivated to succeed when we see others succeeding. We are saddened by that which saddens a peer. We feel what others feel when we care for them. It is important for all of us to remember that we are not in this alone. We have each other and it is important that we utilize others when necessary. Marianne Williamson stated it best in her well-known poem entitled “Our Deepest Fear” when she stated the following:

As we let our own light shine,
we consciously give other people permission to do the same.
As we are liberated from our own fear,
our presence automatically liberates others.”

So continue to let your light shine and consciously give others the permission to do the same. It is through our interactions with others that we will liberate ourselves from our fears and our presence will automatically liberate others. I challenge you to take the time after you read this to get to know someone new. You just might be the light that they need!

A Farewell from Julie

Written by BLC Intern Julie Lee

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

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

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

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

Thank you and best wishes,
Julie

National HIV/AIDS Strategy Rundown

Written by BLC intern Julie Lee

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

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

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

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

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

What Do People Know About HIV/AIDS?

Written by BLC intern Julie Lee

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

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

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

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

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

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

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

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

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

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

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

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

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

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