Welcome Suruchi

suruchi_biopicHello! This is me Suruchi, your new social work intern at the Victory Programs’ Boston Living Center. I am an international student from Nepal, I am pursuing my Masters in Social Work at Boston College School of Social Work. I am a traveler and a nature lover. I am also interested in exploring new places, different cultures and food, working on diverse issues of our community and incorporating all my experience into storytelling.

I was born in a rural village in Nepal and have lived 23 years of my life in proximity with my family and community. I am 24 now and studying in Boston with the dream to pursue my Masters and then a PhD as well as learn and serve diverse community and people during this span of time.

Working for BLC is an opportunity for me to learn and be a part of something I have never done. This is completely different from the work I did. Over the past years, I have worked with diverse groups and populations on different issues which involved education and food security for children who are vulnerable to social injustice issues like the orphans, children in poverty, children in slums and children of prisoners, human rights issues, welfare of women and children, youth empowerment and community development. Working with HIV population is core objective of my internship. In my country, it is one of our burning health issues as well as a societal issue. In fact, HIV related stigma is very prevalent and the need to work on this is great.. Being a part of Victory Programs at BLC, I see this as a way to connect and learn with the population who are supporting the needs of the HIV population and as well as contribute to the vision of building healthier lives in the HIV/AIDs community.

. I am hopeful that I will learn a lot from everyone here and work on the vision and delivery of the services of BLC.I would be grateful to be at your service in any way possible.

Poz Profiles: Greg Louganis

Written by BLC Intern Amrit Ahluwalia

Some material and information used in this article originally appeared on ESPN.com at part of their promotion on the website for ESPN The Magazine’s Body Issue 2016. The link for the original article is found at the bottom of this piece.

With the 2016 Olympics on this month, it’s an apt time to reminisce about America’s Olympic heroes of years past. Greg Louganis, a four time gold medalist, is not only a champion athlete for diving but also a champion activist for the gay and HIV+ communities. Recently he posed for ESPN The Magazine’s Body Issue 2016 and gave an interview talking about his athletic and personal experiences, as well as his current lifestyle and activism. A profile for Louganis and excerpts from the interview are given below.

Who: Greg Louganis

Claim to Fame: Olympic Champion Diver, first athlete to win gold in both the 3 M springboard and 10 M platform in two Olympics (Los Angeles in 1984 and Seoul in 1988). Also won golds at the 1978, 1982, and 1986 World Championships and set records with his scores for his dives.

Positive Journey: Was diagnosed about 6 months prior to the Seoul Olympics in 1988. Spoke publicly for the first time about his diagnosis in 1995.

During the 1988 Olympics, Louganis’s athletic life violently collided with his recently discovered health issues in the most terrifying possible way. During his qualifying round of dives in the 3 M springboard event, Louganis hit his head on the board, suffered a concussion, and bled into the water.  He was competing in a country that would have literally deported him had his HIV status been disclosed and Louganis had to make essentially a split second decision as to whether he would continue to compete or withdraw due to his injuries:

I was paralyzed by fear. I didn’t know what my responsibility was, and I didn’t have a whole lot of time to prepare for my next dive, if I was going to continue. It was a strange time. I remember when we finally finished and we had our team dinner at the end of Seoul, we were handed our Olympic rings and then we were supposed to share something with our family of divers. I got up there and I turned to my coach, Ron O’Brien, and I said, “Nobody will ever know what we’ve just been through.” Because I didn’t think anybody would, because I didn’t think that I would live long enough to see it.

Louganis went on to compete and win the event the next day, as well as another gold in the 10 M platform diving competition. He finished the Olympics having made history, but also dodging a massive bullet. When he came out as HIV positive in 1995, this sparked a huge, retrospective controversy about the dangers of his blood being in the water and perceived irresponsibility for not alerting the officials. However, the chief of HIV-AIDS surveillance at the CDC confirmed, with doctors’ advice, that the huge amount of water in the pool would have diluted the virus and the chlorine would have effectively killed it before it could infect anyone. Furthermore, mere skin contact would not be enough to transmit the virus so no athletes were at a legitimate risk and Louganis had not acted irresponsibly.

Current Activism: Louganis is currently living and thriving with HIV. He recently married to his longtime partner in 2013 and has also become involved with the United States Diving Team again. Louganis has been coaching young divers and even mentored 2016 Olympians in the US program.

While being HIV+ obviously troubled Louganis during his later competition years, he also faced prejudice and stigma from people, even his own teammates, about being gay. In the article he recounts multiple awkward situations regarding roommates and individual’s personal beliefs within the diving team. Diving, and sports in general, have changed drastically in their perception of and attitudes towards LGBTQIA athletes in recent years, however. One of the world’s most talented and visible divers, Tom Daley of Great Britain, came out as bisexual recently and with him there have been other inspiring coming out stories in major US sports such as Michael Sam in the NFL, Robbie Rodgers in MLS, Jason Collins in the NBA. as well as many other public figures. Louganis hopes that this recent acceptance of LGBTQIA athletes soon evolves into increased acceptance of HIV+ athletes and individuals in general.

“I try to live by example — being gay, being HIV-positive — you know, life goes on. HIV taught me that I’m a lot stronger than I ever believed I was. Also, not to take anything for granted. I didn’t think I would see 30, and here I am at 56. I never know what’s going to be around the corner. I don’t think of anything really as a failure; you’re just learning lessons, and I’ve learned a lot of lessons already”

-Greg Louganis, 2016 

Sources:

http://espn.go.com/olympics/story/_/page/bodygreglouganis/olympic-diver-greg-louganis-living-hiv-staying-fit-56-body-issue-2016

The Toughest Sissy in the World: The Moment I Triumphed Over My Bullies

Forecasting Service Demand for Aging Populations of People Impacted By HIV

This post was written by BLC Guest Blogger, Rob Quinn

In 2016, Massachusetts’ city and state health departments are in the process of updating their existing three-year strategic plans which detail principles, priorities, and actions to guide our collective state and city response to the HIV epidemic. As a member of both the Statewide Consumer Advisory Board (SWCAB) at the Massachusetts Department of Public Health, Office of HIV/AIDS and Boston EMA Ryan White Planning Council (RWPC), I have had the opportunity to participate in this process from a consumer perspective.

From the start, I and others called out both the SWCAB and RWPC, in advisory groups, on not including people living with HIV (PLWHA) over age 50 and long-term survivors (LTS) in their integrated planning agendas. By 2020, 70 percent of all PLWHA in the U.S. will be over 50. One way to further ensure that our voices are being heard is to talk the same language used by both city and state health departments—the language of data. We need to focus our collective efforts on the use of data to forecast service demand for aging populations of people at risk for and living with HIVdata to identify our emerging needs in a changing health care environment; and, to ensure access to and availability of the services most needed among aging individuals.

The role of consumers (both individuals at risk and those living with HIV) remains essential to advance new strategies that identify, link, and support adherence to care by local and state health departments and their contracted vendors. LTS have experiences unique to long-term HIV survival, including extensive antiretroviral use and long-term side effects. Many LTS have served as our own advocates since embarking upon a journey that continues to bring us into new and uncharted territories.

Consumer or stakeholder (a word that’s gaining agreement locally) engagement is taking on new importance given advances in medications, tools such as PrEP, and strategies to improve outcomes for those at risk and living with HIV disease.  Consumers or “stakeholders” have the unique ability to collaborate and partner with health departments to identify ways to strengthen public health strategies.

For example, at our most recent SWCAB meeting, we engaged with senior staff and field epidemiologists/disease intervention specialists (DIS) on ways to strengthen patient and provider relationships to lessen barriers to care, particularly among people of color. Engagement fosters the improvement of practices for improved quality and outcomes.

Massachusetts is committed to engaging consumers in meaningful ways to strengthen our public health response. A cornerstone of this strategy is “engagement” – purposeful, facilitated, and accountable – in our current groups and in ad-hoc planned discussions. We have a strong infrastructure, including formal advisory groups and robust connections with stakeholders and related groups, but more needs to be done to prepare for an aging population with HIV.

The best practice of HIV prevention and care involves more than programming that targets reducing new HIV infections and achieving viral suppression; it should prioritize creating health equity for all, including PLWHA over 50. Health equity entails everyone having the opportunity to achieve their optimal level of health. To accomplish this, it means more will need to be done to make that happen.

On a city, state and national level, my call to action for the immediate future includes asking health departments:

  1. How is your jurisdiction assessing and responding to the needs of PLWHA over 50?
  2. How are your advisory groups and community engagements reflecting PLWHA over 50?
  3. What will the National Association of State and Territorial AIDS Directors (NASTAD) do to highlight the needs of persons living with and at risk for HIV who are over 50?

Add YOUR voice! Whether a person living with, affected by or at-risk for HIV/AIDS, a provider, community leader or concerned person, how will you get involved? Whether or not you are directly impacted, we are all affected by HIV/AIDS.

 

Campaign 2016: How Presidential Candidates’ Views May Affect HIV/AIDS Patients in the United States

Written by BLC Intern Amrit Ahluwalia

A contentious election cycle has recently narrowed down to two primary candidates in Hillary Clinton (D) and Donald Trump (R). The two have very different views on most issues, including subjects like healthcare and taxes, both of which are very significant to the HIV+ community. Enacting either of their policies could lead to huge shifts in the care and services available to HIV+ Americans and thus it is important to know where both candidates stand on these relevant issues.

Below is an infographic detailing both candidates views and plans for addressing four key issues for HIV+ Americans.

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A Belated Introduction: Meet our new summer intern, Amrit !

Amrit is a Community Health intern at the BLC for the summer of 2016

Hi all! This is Amrit here with a very belated, formal introduction. I am a Community Health Intern here at the Boston Living Center and I can’t believe it’s already August! I am a rising sophomore at Dartmouth College, originally from a suburb of Philadelphia, and have had an amazing time at the BLC and in Boston so far. This is my first time living in a big city and I’ve really enjoyed “playing-adult” with my roommates. In my free time I like to read, work out, play field hockey, cook, and explore the sights!

I got the opportunity to intern at the BLC this summer through the Boston Community Health Internship Program at Dartmouth, sponsored by the Dartmouth Center for Service. My co-interns and I were placed at various non-profit, community health organizations across the city and I was lucky enough to end up at the BLC! All of us have gained experiences that could never have been replicated back in Hanover, working directly with diverse populations, confronting issues and policies that are unique to Boston and Massachusetts, and being surrounded by world-class healthcare and medical professionals. My time at the BLC has taught me a lot about how all of these aspects of healthcare come together and the Center itself is its own very comprehensive, microcosm of the services out there so I am very grateful for my placement here.

At Dartmouth I intend to major in Anthropology and am a pre-med student. My eventual ambition is to attend medical school and go into global health policy and I can already see how my time at the BLC has positively influenced by hopeful future career path. Previously I was just intrigued by global health, with no real inclination of what specific issues I may want to delve into, but the education and experiences I have had at the BLC so far have definitely piqued my interest in chronic diseases. In my time here so far, I have especially enjoyed interacting with members and hearing about their thoughts and experiences, about both their lives and the disease. I firmly believe that policy makers should hear first hand about the experiences of the people that they are representing and attempting to help and having the opportunity to get close to members here is really invaluable. I have already gained so much from my time at the BLC and am looking  forward to learning much more from the incredible staff and members here. I hope I can positively impact the community here with my work, as a huge thank you for all that you have already done for me! I will talk to you on here again soon!

A Call to Action: Meeting the Needs of Long-term Survivors

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HIV prevention and care is more than “Getting to Zero” (new infections) and achieving viral suppression. HIV prevention and care is about creating health equity for all, including Long-term Survivors (LTS). “By health equity, we mean everyone has the opportunity to attain their highest level of health. Inequities are created when barriers prevent individuals and communities from accessing these conditions and reaching their full potential.” (American Public Health Association)

For the purpose of this post, LTS is defined as those of us living with HIV who tested positive for the virus before the advent of highly active antiretroviral therapy (HAART) in 1996. We have experiences unique to long-term HIV survival, including extensive antiretroviral use and long-term side effects. Many aspects of long-term HIV survival are not the same as those faced by others more recently diagnosed with the virus. Many LTS, myself included, have served as our own case manager since embarking upon a journey that continues to bring us into new and uncharted territories.

At a recent meeting of my local Long-term Survivors Support Group (LTSSG), discussion ensued about an increasing need by some members for first-time and/or acute case management and supportive services. Members shared some of their emerging challenges of long-term HIV survival and aging with HIV, which included navigating increased healthcare services, fatigue and barriers to accessing case management. One member had problems getting case management because of being deemed “not vulnerable” at a local AIDS Service Organization (ASO). “Not vulnerable” was defined as being engaged in care, having achieved viral suppression, and in stable housing.

Another concern raised by group members was the current level of knowledge, expertise, and ongoing professional development, if any, that case managers and other providers had in the areas of long-term survivors, our emerging needs and aging across the lifespan, with an emphasis on gerontology. With advances in HIV treatment, more individuals have grown older with the disease. Do ASOs, state health departments and city health agencies really know the needs of this population in our community if they never see or hear from us?

As we move forward, we LTS need to continue to engage one another in discussions that acknowledge each other as pioneers and explorers of not only surviving with HIV/AIDS but also thriving. We need to bring our voices to the priorities and implementation of local, state and federal initiatives. Locally, that includes the Massachusetts State Integrated HIV Prevention and Care Plan, 2017-2021, and the Boston EMA Ryan White Planning Council’s Comprehensive Care Plan, 2016-2019. At a minimum, these strategic plans should include early on a consumer study on the unmet needs of long-term HIV survivors. Today with so much emphasis on Getting-To-Zero (new infections) and achieving viral suppression, many of us long-term survivors feel invisible, unheard and forgotten. Our needs cannot be pushed aside for the next three to four years!

HIV Long-Term Survivors Awareness Day is held annually on June 5th on the anniversary of the first published report of what came to be known as AIDS. 2016 is a big year in the history of HIV/AIDS in the US. Not only does it mark 35 years since the first report of AIDS, it also marks the 20th anniversary of Highly Active Antiretroviral Therapy (HAART), turning what was once a death sentence in to a “chronic manageable illness”. To get involved or learn more; visit http://hltsad.org.

I am ready to live and not just exist!

This post was written by BLC intern, Anita Peete. Anita sat down with a long time BLC member, Lisa, to learn her story:

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In life we are going to face many obstacles no matter our socioeconomic status, race, gender, or sexual orientation. While we all face obstacles, we know that oppressed groups face far more obstacles than dominant groups due to systematic racism.  But even in the face of adversity many people thrive to make their lives better. I had the pleasure of sitting down with a Boston Living Center member who has risen from the depths of despair to living a very optimistic life.

While incarcerated in 1999, Lisa found out she was HIV positive. Upon her release she didn’t receive any information about HIV and didn’t know anything about HIV. She took it as a death sentence and decided to live her life as if she was going to die. After being released from South Bay jail she started getting high again.

It wasn’t until 2001 when she found out she was pregnant with her third child that she decided that it was time to get her life in order. She was admitted to Boston Medical Center for 3 days for medical detoxification. They placed her on methadone and in that time she had her son. Her son was addicted to methadone and Lisa had to watch as he suffered through the detoxification process. . So picture it, a newborn detoxing off of methadone and how hard that must have been for her to witness.

This wasn’t the only challenge that Lisa faced. In 2010, she lost her father and then tragedy arose again in 2015 when her mother passed way. She could have thrown in the towel, but she continued to persevere and push beyond the setbacks. After being incarcerated, losing her children, being addicted to heroin, and losing both parents, Lisa has decided that she is ready “to live and not just exist”.

When I asked Lisa what one word would describe her life, she was a little lost for words, but her first word was “challenging”, followed by  “triumph”. Her life is one that was challenging, but in the end she triumphed over all of her circumstances. Lisa seems to have found peace in her past and allows it to motivate her to continue to press toward her goals.

“I would have to say that this is the first time that I am okay with where I am in life. My kids are okay. I am okay. Triumph maybe. I am trying to compare it to where I used to be and it’s amazing. I am optimistic about my future. I haven’t felt like that in a longtime. I am ready to live and not just exist!”

Lisa is currently taking college preparatory classes in preparation to go back to school in September. She is working as a case manager for young adults in the city of Boston. Not only has she worked to get her life in order, but  isa is the single mother of 3 and the grandmother of 2 precious grandchildren. She continues to make her life better despite all that she has been through. Lisa is a strong and adored  member of the Boston Living Center. I believe I can speak on the behalf of all of the staff and say that we are proud of the progress that Lisa has made over the years!