Constituent Spotlight: Edward Jackson

HIV, aging, and leadership, have characterized my life in differentways for three decades. Each has impacted how I define my life in various ways. As a person aging with HIV, thriving with the virus began as a complication but now, with time and wisdom, has been reduced to an endearing contradiction.

Thriving with HIV 20 or 30 years ago was like aging prematurely with the physical frailty, awareness of my mortality, and the common fact of life for the elderly: the frequent death of friends.

The constant funerals and memorials always left me fearing my imminent and premature death. I was uncertain that even death might not ensure relief as I remember when funeral homes would not bury dead friends or when I met relatives of the dead who had shunned their children. Death was often defined by pain, shame, confusion, and isolation.

Unconsciously, I became stronger by will, tougher by faith, and more calculated and determined as I learned to navigate biased providers, economic trap doors, and impossible social service systems. I became a professional student, without designing a strategy towards that end.  Again, without a deliberate plan, I received training to write more effectively, support to deliver messages to our communities more effectively, and develop my voice, that is now heard on boards and advisory bodies and in individual settings.

Somehow, this plague of a virus, this bullseye of stigma and shame, became the springboard for my role as a leader.  As I fought for my life and for my strength through the early years, I now apply lessons learned to fight disparities in our communities.  I am part of a community of advocates and peer educators who, through many varied routes, have distinguished ourselves by thriving not simply surviving.

My initiative is my own, but my capacity in this field comes from countless trainers, providers, and associates. My wisdom is my own but my developed influence in the HIV primary care world has been born of compassion, empathy, and experience as a caregiver for the weak and dying.  My authority comes from what I owe them, myself, and those I will meet tomorrow.

I embody a global movement that has evolved into a worldwide model of chronic care and peer support.  We have defined an epidemic. It has not defined me (us).

I practice self-care. I initiate and value partnerships on local, state, national and global levels.  I consult with academic, clinical, faith-based, and healthcare systems to disseminate in ever-changing, innovative venues.  I draw from my lessons learned as a Gay, African-American man in America. Every assault every fear and aggression I have experienced has transformed into the powerful foundation that frames my advocacy to be the change I seek.

My leadership is valued in the HIV and chronic care world and comes from working with marginalized individuals, People of Color, and LGBTQ communities. The challenges of HIV & Aging still represent an enormous gift and paradox.  This gift defines my commitment to this life-giving, life-changing vision to the reduce stigma, provide education, and end HIV in our lives.

Meet the 2018 Youth Initiative Scholars!

On behalf of NMAC and our funders – ViiV Healthcare, and collaborative partner Advocates for Youth, we are pleased to announce the 2018 Youth Initiative Scholars! This program empowers young leaders in the HIV community with leadership skills, as well as improves HIV and public health literacy to bring back and apply within their communities and organizations.

The 2017 Youth Initiative, now in its seventh year, brings together the next generation of leaders ages 18–25 (known as Youth Scholars) to participate in a seven-month, comprehensive program to help end the HIV epidemic in the U.S. As part of this program, Youth Scholars will gain opportunities to develop leadership, increase their knowledge, and build confidence while integrating key youth-specific messaging in local, state and national HIV/AIDS programs and advocacy agendas.

USCA 2018 LogoThe Youth Scholars will also attend the U.S. Conference on AIDS (USCA), held September 6-9 in Orlando, FL. During the conference, Youth Scholars will participate in sessions meant to advance their leadership skills, build confidence, and learn new ways to prioritize youth within HIV/AIDS programs and policies in their communities.

Congratulations to the following scholars for their acceptance into the 2018 Youth Initiative Program!

 

Raven Perry resides in Houston, TX. She has been a Community Health Worker working in HIV prevention and Fe for over a year. Prior to becoming a Community Health Worker, Raven was a student studying Health Science at Stephen F. Austin State University in Nacogdoches, Texas where she was also a Peer Health Educator. She worked side by side with students on campus to advocate for important issues regarding student health and wellness. These issues included better access to STI testing, reducing stigma related to mental health, recognizing intimate partner violence, as well as many other important issues students in college face on a daily basis. Upon graduating, Raven became employed with Avenue 360 Health and Wellness as a Community Health Worker where she became trained in protocol-based counseling, HIV testing, and risk reduction for persons who are HIV negative, and those living with HIV. Raven also recognizes the importance of education as she teaches and facilitates monthly classes on women’s health and HIV at a women’s in-patient drug treatment facility, and facilitates an ‘HIV 101’ class at a Parole Office for persons who are recently released. While working at Avenue 360, Raven has become fiercely passionate about HIV prevention, education, and general sex education for youth of color. Therefore, she plans to take that passion, drive and hopes to learn on how to become a better advocate for those who are disproportionately affected and looks forward to participating in the 2018 Youth Initiative Program.

 

Jax Martin is a young and outspoken individual from West Palm Beach Florida and has a passion for serving those within the LGBT+ community. Jax served as the President of the Gay Straight Alliance at Boynton Beach Community High School. He attends and acts as a peer facilitator for Entourage, which is a young adult queer support group that meets at Compass, the Gay and Lesbian Community Center in Lake Worth. Since a young age, he has had a passion for HIV education prevention and treatment. Aspiring to work within the field, he volunteers in the HIV prevention department at Compass under the leadership of Dylan Brooks.  He feels a need to give back to the community that has given him so much. He looks up to Dylan heavily, and wants to make a difference in the community like his mentor. Jax excels in outreach and loves to talk to people and make connections, which has helped him within his aspiring career. He is very excited to be a part of the youth initiative!

 

 

Terrance Walker is a 23-year-old native of Houston, TX.  He currently resides in Oakland, CA where he serves as the Youth Activities Program Coordinator at AIDS Project of East Bay. His work in youth services began nearly six years ago as service recipient where Terrance worked to use his lived experiences to catalyze change within his community.  Now that he is a service provider he has the knowledge and resources to influence policy on a national level and a platform to effectively impact his peers. As an openly gay, black, millennial, he is passionate about the work that he does to educate LGBTQ youth of color about HIV prevention and care because he can see a piece of himself within each of them. Terrance believes that the only way to address stigma and confront misinformation is by initiating those uncomfortable conversations regarding sexual health with our young people without judgment or shame. He believes that we can work to end the HIV epidemic and someday reach an AIDS free generation if we work to foster a more harm reductive and sex positive culture for young people through education and empowerment.

 

Alixe Dittmore is a 24-year-old from California, who she grew up in northern Connecticut. She works as a Prevention Outreach Educator at AIDS Connecticut (ACT) in Hartford, CT and has been with ACT since January 2018. Her work is focused around HIV/STI education and prevention, as well as substance user health and harm reduction. She also in the process of being trained on HIV testing and counseling! Prior to her work at ACT, she was a student leader at the University of Connecticut focusing on harm reduction and sexual violence prevention. Alixe is now enrolled in the Applied Psychology Program at the University of Massachusetts Amherst with a focus on Victim Advocacy. She plans to continue her education with a concentration on the intersections of systems of oppression and public health. She believes that it’s absolutely vital to normalize conversations about the very real systemic oppression in our society against marginalized communities in order to adequately address the public health epidemic of HIV.

 

 

Donovan Carhuapoma is 21-years-old and considers himself to be a strong and uplifted individual. He was born and raised in Miami, Florida. His parents are from Lima, Peru. He has an older brother and a younger sister. He found growing up as the middle child to be pretty neat. During his early school years, he was shy and quiet, but as he got older he started coming out of his shell little by little. He started playing the flute at age 1, when he was in middle school. Playing his flute showed him what dedication and effort looked like meanwhile sparking a passion in him that is still present today. His high school years were filled with a lot of success academically, but also a ton of learning experiences that he holds close to him. He almost fell apart halfway into his high school career because he became overwhelmed with things that were not in his control. He is glad to say he overcame his tribulation and triumphed. He is a strong believer in being able to cope with things that happen in his life and in having the potential to achieve what he sets himself to do.

 

 

Kiman McIntosh is an 18-year old, first generation Jamaican-American boy, born and raised in Miami, Florida. Brought up by a single mother and a select group of her friends at a young age, he developed a love for the arts and indulged himself in sketching, mostly designing dresses. He is currently an amateur graphic and web designer. In retrospect, he would consider himself reserved and quiet to the extent that most of the people in his life never knew the sound of his voice until he was eight years old. As he grew older, he began to find the inklings of his voice while still battling the urge to remain silent due to his upbringing. He stands very firm in what he believes in and supports effective action. Kiman believes that he can be an activist and organizer because he has the passion to lead. Organizing is about mobilizing marginalized groups such as the HIV/AIDS community to disrupt and dismantle the stereotypes.

 

Jefferson (Jeff) Remo represents the state in the middle of the Pacific Ocean, Hawai’i. He is a 23-year-old, Filipino-American, born and raised on the island of Oahu. He graduated from the University of Hawai’i at Mānoa with a degree in Public Health, where he found a passion for health equity and social justice. During his undergrad, Jeff was able to do PrEP-related research with the Thai Red Cross AIDS Research in Bangkok, Thailand. As a young researcher, he learned the importance of engaging and involving priority populations to create and implement effective evidence-based interventions. Now as the PrEP and STD Program Coordinator at the Hawai’i Health and Harm Reduction Center, the oldest and largest AIDS Service Organization in the state of Hawai’i, he works with priority populations in Honolulu to successfully access HIV biomedical interventions. Jeff also works alongside neighbor-island ASOs, Hawaii’s Department of Health, and other key stakeholders to eliminate the structural and social barriers that fuel the health-disparities with the populations he works with. He is excited to represent the state of Hawaii and be a voice for youth, Native Hawaiians, Asians, and other Pacific Islanders in NMAC’s 2018 Youth Initiative.

 

Alfredo Flores is a proud Queer Latinx from the Little Village neighborhood of Chicago, Illinois. Alfredo recently completed his Associates in Science and is eager to complete his Bachelor’s degree in Psychology. Alfredo is currently a Care Coordinator at Chicago House & Social Service Agency where he assists individuals that are newly diagnosed with HIV and those that are not in care by linking them to a permanent medical home. In his prior work experience, he has been an HIV Tester and also facilitated a Center for Disease Control (CDC) intervention called Mpowerment. Aside from his required job duties, Alfredo has organized large scale events for local agencies that include community mixers, fashion shows, fundraisers and social events. Alfredo has also been featured in a national campaign called #DoingIt/Haciendolo by Act Against AIDS. Alfredo’s commitment to the field has been shaped by working with those most vulnerable to HIV, especially working with those who are Latinx, undocumented and those who are monolingual Spanish speaking. He hopes to continue being a resource for those most vulnerable and empowering them to speak their truth without fear.

 

Jai Lei Yee (pronouns he, they, ze/zir) is a 25-year-old, a queer aromantic asexual, a nonbinary genderfluid person, and a 1.5 generation Chinese-American. They consider the San Francisco East Bay their home since they grew up in Oakland and San Leandro. They have a B.A. in Gender and Women’s Studies, and Asian American and Asian Diaspora Studies with an LGBT minor from UC Berkeley. Before 2012, they had never heard of PrEP and had never saw themselves represented in conversations about HIV prevention as a young queer Asian American trans person. In 2012, their queer man of color counselor told them about PrEP.  It was in their current role as a PrEP Navigator at the San Francisco Community Health Center that they realized how barriers such as stigma against people who take PrEP and lack of community dialogue about PrEP limit its use in queer and trans people of color. They are honored to be a recipient of the 2018 NMAC Youth Initiative and strive to learn from their peers and from people in different generations. When not working, they are part of different artistic workshops focused on queer and trans people of color where they learn new things.

 

Reginald Ford is a senior at Old Dominion University, majoring in Business Administration and looking to pursue his master’s degree in Business Administration and Communications in 2020. He is a full-time Graphic Design & Events Manager for a local non-profit in Virginia and owns a creative design company. Reginald has an extensive background in graphic design, special events, fundraising, and marketing. Through the many successes in his life, he has also had some life-changing experiences. Through these experiences, it has led him to his passion for helping students to continue towards post-secondary education, fighting to spread awareness of the HIV/AIDS epidemic, and graphic designing. This opportunity with NMAC will allow him to help advocate for those living with HIV/AIDS and to help prevent the spread of HIV/AIDS. Also, this program will allow Reginald to grow as an individual and to continue to help drive his community to become more inclusive and aware.

 

 

 

Justice Long is an openly HIV positive, pansexual, two spirited individual currently living in Jacksonville, FL. They found out they were HIV positive at the age of 16. Shortly after their diagnosis, they became affiliated with a local organization that helped them to identify the emotions they were feeling and taught them how to cope with these emotions in a positive manner. The organization also helped Justice to mold their voice and realize that there are others out there who are either going through or went through the same situation or worse than them. By sharing their story, they could not only help those people but also save others at the same time. Since then they have traveled the country doing speaking engagements, campaigns, panels, and group discussions regarding not only HIV/AIDs but also LGBTQ rights, youth empowerment, incarceration, mental health, homelessness, and suicide, as well as policy reform and cultural/linguistic competency. Their motto is, “if you’re not infected, you’re affected. If you’re affected, you’re effected. So why not stand for a cause that infects everyone affected with effectiveness.” #ActualReality #ActUp #EndAids

 

 

Maliek Yuseef Powell is an American, community activist, writer, and visionary from Birmingham, Alabama. He was born on July 12, 1992. He started his activism journey, specifically of HIV and mens health issues, in 2012 when he tested HIV positive with an AIDS diagnoses. Maliek was nineteen years old and attending a local community college majoring in radio and television broadcasting at the time. Eventually dropping out, and secretly falling into a state of depression, he found himself on a mission to learn as much as he could about his new ailment. Maliek started a personal research of his own by finding and connecting with HIV positive individuals though social media. In 2013, nearly a year to the date he tested positive, he made a post to his personal social media outlets disclosing his HIV positive status to many of his friends, family, and followers. Since then he has worked with many local and national organizations that specialize in the fight against AIDS. His mission is to always to bring a current view into HIV, while shifting the stigma that surrounds the epidemic, and amplifying the conversations we all have when it comes not only to HIV/AIDS but all men health disparities.

 

Gregory Meredith was born and raised in Southeast, Washington D.C. to Diana Shelton and Gregory S. Meredith on February 14, 1998. He experienced hardship at an early age after the passing of both his mother and father, which brought him closer to God and his Grandmother. Despite of his childhood tragedy, Gregory was persistent with maintaining and excelling in his educational career goals. He received his high school diploma from Washington Mathematics Science Technology, PCHS where he transferred from Duke Ellington School of the Arts. Gregory currently serves as a Health Impact Specialist with the DC Department of Health, partnering and collaborating with local community based organizations with health screenings, outreach activities and conference trainings to better serve his community. His most prominent achievement is his recent collaboration with Us Helping Us, People Into Living Inc. (UHUPIL), Washington D.C.’s largest Black HIV/AIDS organization. While working with UHUPIL, Gregory’s passion grew for helping people and ending the stigma that comes with the HIV epidemic. Gregory plans to continue his journey as a Public Health Worker and strives to make a change in his community and the communities around him.

 

Darriyhan Edmond is a 23-year-old young, gay, black man born and raised in Gary, Indiana. Darriyhan has always been involved with his community, he loves helping to build, uplift, and support others. He knew that his purpose in life was to be a positive figure within his community. On November 13 of 2013, at the age of 18, he was diagnosed with HIV. After being diagnosed with HIV, he took the time to educate himself on HIV, prevention, care and treatment. With the knowledge he gained he began to share it with family and close friends. He loved the feeling he got from sharing that information; 3 months into living with HIV, he decided to become an HIV advocate and dedicate himself to bringing HIV awareness to his community and to help fight the stigma surrounding HIV. His favorite quote is, “The fears we don’t face becomes our limits”. He is a strong believer in the fact you can become whatever you set yourself out to be and HIV should not hinder you from accomplishing your goals. In 2016, he decided to leave Gary and move to Atlanta, GA where he continued his involvement in the community with HIV. Darriyhan is a member of the 2018 Build-A-Brother-Institute of NAESM, as well as a participant in the NMAC’s BYLOC (Building Young Leaders of Color) program. He is currently the founder and project director of Project RED Paint, a project he started to help provide support, empowerment, knowledge, and acceptance to individuals living with or affected by HIV. By participating in the Youth’s Initiative program of 2018, he hopes to gain additional knowledge about HIV and the opportunity to meet and connect with other HIV advocates. He is excited to attend USCA for the first time this year.

 

Ariel Sabillon was born in Honduras. At the age of ten, he relocated to South Florida due to poverty and violence in his hometown. He was diagnosed as HIV+ during his junior year of high school. Now in college, Ariel is the president of student-run organization Advocates for Immigrant and Refugee Rights. Ariel is an advocate for young people living with HIV and for immigrants – particularly Central American immigrants. He seeks to challenge the ways in which we view national identity – opting instead to look beyond borders and reach out to a more global community. As part of the FL HIV Justice Coalition, he wishes to modernize laws regarding that criminalize HIV “exposure” in the state of Florida.

 

 

Jordan Delfyette is from Brooklyn, New York. Growing up as a child, he really didn’t have an idea who he wanted to be, but he knew what he wanted to do and that was to help people. Being raised by his grandmother and watching her be a caretaker to her mother, 14 siblings, nieces and nephews and at work. He watched her do what he thought was the impossible in helping people. Jordan didn’t know that he would grow up to share those same characteristics. Watching her taught him to carry compassion, patience, and love. Through the art of writing he could verbally express his deep thoughts and emotions on paper which he used to captivate his audience. “Dialogue became my healing as well as healing for others”. In his free time, he practices the art of dance which became an outlet for his mental, emotional, and spiritual being.

 

 

Marnina Miller is a Michigan native currently residing in Houston, Texas. She fell in love with activism after joining Positive Organizing Project, amovement that trains people living with HIV on how to become effective HIV activists. This out and proud, Black queer young woman facilitates trainings on anti-stigmatizing language, effective leadership, sex positivity, and community organizing. At Positive Women’s Network-USA, she is a 2018 Public Policy Fellow, and a member of the Strategic Communications Action team. Marnina is a youth ambassador for Youth Across Borders where she spent time at Montaña de Luz, orphanage for children living with HIV in Honduras. She is also the Co-Chair for the Texans Living with HIV Network, and a recipient of the Violet Award, which recognizes LGBT advocates in Houston. She is also the graduate of the inaugural Building Young Leaders of Color (BYLOC) leadership training. Marnina is also a feature writer for the international online publication Life and Love with HIV where she is dismantling the stigma of women; developing, maintaining, and pursuing a healthy sex life one blog post at a time.

 

 

Hailing from the City of Atlanta, Jamaan Parker is no stranger to the field of HIV. Since his positive status diagnosis in 2014, Jamaan has worked diligently to create communities and environments that are POZ-friendly and incorporative. Mr. Parker began his HIV journey as a political advocate working with Georgia Equality as a YHPA (Youth HIV Policy Advisor). In this capacity, Jamaan worked with Georgia politicians and other elected officials to develop laws and policies that considered the daily struggles of people living with HIV. He believes that to effectively create policies and laws for people living with HIV, people living with HIV must be involved in the law-making process. He has taken a brief hiatus from advocacy, but continues to work with politicians and elected officials. Mr. Parker has found a new passion as a HIV Outreach Specialist. Jamaan provides HIV and Sexual Health Education, STI & STD Prevention, and Community Outreach. In his spare time, he is a part of a social movement called The He Is Valuable Project which reinforces and mobilizes the power of Black and Latino Queer men within all communities to address the HIV epidemic and the social injustices PWLWHA face. As a youth leader, Parker emphasizes that the youth should be at the forefront of the HIV epidemic. The youth’s voice is the change we need to shift the paradigm of HIV in America. Youth have the innovation and the ideas to reach goals in HIV that were never possible. However, there are very few resources and opportunities for self-development for Black and Latino POZ youth to be leaders in the community.  Jamaan Parker works to develop programming to educate and build Black and Latino youth leaders to be voices in the HIV community. Jamaan prides himself on self-development and gathering knowledge with the intent of disseminating that knowledge, information and resources with the hopes of community betterment.

 

Trevoy Johnson is a young emerging leader from the city of Chicago, IL. At an early age, he has been marked and known for having desire to know and do more. Johnson is an upcoming, all-around creative, having performed in numerous concerts, recordings, theatrical productions, and tours. A current Business Administration student of Robert Morris University, Johnson has worked to increase in education regarding leadership and the development of leaders. These aspirations have given Johnson keen discernment for the potential placed in others and the passion to see those potentials maximized. Johnson is also an active member of the Consumer Advisory Board at the Ruth M. Rothstein CORE Center in Chicago, IL. He has also been a participant of PreP awareness programs and studies through the University of Chicago since 2016. Aspiring to achieve his doctorates in Leadership, Trevoy Johnson is a dedicated to use creative arts and education to bring about knowledge, opportunities, training, and ultimately impactful results to his generation and generations to come.

 

 

 

Lisa Watkins is a youth advocate located in Memphis, Tennessee. She is 23-years-young and enjoys what she does. She is currently breaking from LeMoyne-Owen College where she is a second-year student majoring in Sociology with a minor in Psychology.  She is involved in many different organizations and groups such as AIDSWatch2016, Youth Leadership Initiative Memphis, Scale It Up! National YCAB, Nashville HIV Day on the Hill and a plethora of others. She has been honored and given the opportunity to join a few of the NMAC (National Minority Aids Council) Youth Scholar programs such as BYLOC (Building Youth Leaders of Color) and Youth Initiative. In her short years as an advocate, she has been asked to participate in magazine articles and also speak on her experience as a person living with HIV on a handful of panels and events. Lisa found this journey to stand for the causes such as HIV, suicide, and reproductive health and justice as a youth advocate is far from easy and will test your patience and ability at all times. Her role as a youth impacted by these causes is to use her voice to encourage other youth to use their own. She believes in raising awareness not only for the causes she stands for but to show elders that youth are still here, and they are important to include in the decisions made on their behalf. She plans to achieve a stronger bond with her peers and create a safe environment where youth aren’t scared to walk in their truth and make a change.

 

Representing Daly City, California, Julius Pikes-Prince is someone who brings all the sass and class! He’s currently majoring in fashion design. Julius would like to break the barriers in the fashion industry with his unique style. He wants to use his platform to help end the HIV and AIDS epidemic. His dedication to putting the end to the epidemic has led to him becoming a peer ambassador at LYRIC (Lavender Youth Recreation and Information Center, a San Francisco queer youth resource center). As a peer ambassador Julius helps provide PrEP education to youth in his community. He has become a powerful leader in San Francisco. His work in the community is unbelievable! He looks up to the late Harvey Milk. Harvey Milk has become one of his inspiration in life. Harvey has shaped the leader that Julius is today. In the near future, Julius would like to open his very own queer resource center for the youth. He would like to give back to the youth in his community and providing the services they need.

 

All of Corey Clark’s life, pain and pleasure has been one in the same; not in the aspect of enjoyment of being hurt, but the idea that there’s purpose in his journey. At the age of 13, he lost his mother, which was the catalyst for his transition to Milwaukee, Wi. from Greenville, Ms. If you know anything about either of the two places you may have a better idea of how “exciting & spontaneous” his life is.  At a young age, he became numb to violence and over time taught himself that he wasn’t meant to be loved. He discovered he was HIV positive at the age of seventeen, but not ever hearing of HIV he didn’t fully understand what his life meant at that point. After being exposed to the stigmas of HIV received from family, friends, and other close forms of relationships Corey quickly became aware of more than the possibility of AIDs. Some may look at this as a weird way of looking at it, but he believes that his numbness to certain things made it easier to deal with the following events: cultural stigma around being positive; being neglected by his support systems, experiencing homelessness, suicide attempts by putting himself in harms ways; developing alcoholic tendencies, depression, sex addiction, sex work and more. His only proclaimed privilege in those times was hi want and willingness to make meaning of the term life. In September of 2017, He attended the United States Conference on HIV/Aids where he was a participant of the Youth Initiative and he began a journey of entrepreneurship and self- discovery.

Not listed: Matthew Rodriguez-Thacker and Corie Easley*

 

Returning Scholars 2017

Tapakorn Prasertsith (pronouns: they/them/theirs) is a non-binary, 2nd generation Thai person living in the San Francisco Bay Area. They moved there to pursue the tech industry, but found a need elsewhere, in the marginalization and disparities in the cities, particularly with LGBT people of color and transgender communities. After volunteering at Asian & Pacific Islander Wellness Center as an HIV Counselor, they were offered a position to start their PrEP program. Since then, Tapakorn has become the Program Supervisor for HIV Prevention for the same agency, re-branded now to San Francisco Community Health Center. They are honored to be a returning scholar this year and to be able to share their experience working with priority populations in Getting-to-Zero. In Tapakorn’s spare time, they compete in volleyball and video game tournaments, working within a niche community of “gaymers” to further HIV education, prevention, and treatment appropriate to where youth gather nowadays.

 

 

 

Tobeya Ibitayo is a Capacity Building Specialist at AIDS United working with the Getting to Zero Initiative. He brings experience in qualitative research, direct client service, and curriculum design and implementation. Previously, Tobeya was a Federal Insurance Navigator at the Missouri-based nonprofit, Saint Louis Effort for AIDS, where he provided health insurance literacy education and enrollment services through a state-wide network of service organizations and clinics. He has also served as a Teach For America corps member in Tulsa, Oklahoma, and as a math instructor with Blueprint Schools Network in East Saint Louis, Illinois. Tobeya received a BA in Anthropology and African & African American Studies from Washington University in St. Louis.

 

 

 

 

Jessica Zyrie is a black transgender model, advocate and the first transgender female clinical case manager at the Montrose Center. Jessica has used her platform to advocate for equality across the intersectionality of race and gender identity. Jessica Zyrie became public with her transition in October 2016 and has used her publicity to increase visibility and education for the community. She has advocated with local, state, and national organizations including, American Civil Liberties Union (ACLU), Equality Texas, Transgender Education Network of Texas, Center for Disease Control, Gilead, Houston Health Department and has been featured internationally on Google Pride’s 2017 Campaign #IShowUp. Jessica has attended city wide events to address the mayor and council and has traveled to the capital for lobby days.  She has worked with many designers throughout the nation and has been published in countless magazines. She has been featured in online fashion editorials for major magazines including Essence, Elle, and Marie Claire magazines. Jessica Zyrie is motivated by the communities she belongs to, works with, and other communities facing discrimination and stigma. Her hope is to continue to inspire people to live in their truth, whatever realm that may fall in, because there is only one life and every individual deserves to live their life’s entirety, in truth, happiness, safety, and free from stigma.

 

In 2013, Kyle Rodriguez was diagnosed with HIV at the age of 18. Instead of letting the virus define him, he defined it. Shortly after becoming a client of AIDS Project New Haven (APNH), he became a volunteer offering support and information to young MSM in his community – regardless of their HIV status. Kyle’s passion for APNH and the fight against HIV allowed him to become employed full-time as an MPowerment Coordinator. Now, he is responsible for creating a more inclusive, healthier LGBTQ+ community through social activities, forums, and educational workshops surrounding HIV prevention and other relevant topics.

An integral part of Kyle’s personal and professional life is building flourishing relationships. Professionally, he has partnered with doctors, The New Haven Pride Center, and other grassroots LGBTQ+-focused organizations to raise awareness about HIV. His dedication for public health has led him to international levels. In addition to attending the 2018 BYLOC training and the 2017 Youth Initiative Program, Kyle has traveled to Honduras for a week-long, cross-cultural service trip at an HIV orphanage. In the fall, he will attend UConn as a double major in Public Health and Anthropology. When Kyle is not advocating, he likes to spend time with loved ones, hike, and exercise.

 

Danne’ Hughes is a young woman fighting to eliminate the alarming statistics that women and women of color face every day regarding HIV/AIDS. Although Danne’ is not HIV positive she, like many other women live, work, play and most importantly advocate within the HIV Positive and Negative community. Warriors who identify as HIV+ have taught Danne’ to always own your true self and to not apologize for who you are and what you represent. As a returning scholar, this is truly an honor for Danne’ as she is learning how to advocate for young women just like her. It has been a journey for her as she has to adapt to being vulnerable and tenacious while giving her all day by day striving for continuous improvement within the statistics. Currently occupying a position as a Health Educator, Danne’ has the pleasure of educating youth much like herself on how to prevent the spread of HIV. As a full-time mother, educator and student, Danne’s main goal is to spread the word and insure that HIV awareness becomes common knowledge in a way that is relatable, easy to understand and fun for everyone!

 

 

Special Note: Standard Registration for USCA ends on Friday, August 10, 2018. For more information about this and all of the conference’s registration rates visit the USCA registration page: here

Important Happenings in HIV/Health Policy

Important Happenings in
HIV/Health Policy

Week Ending: July 13, 2018
By: Matthew Rose & Sable K. Nelson

Ryan White Funding Clarification
A recent Slate article reported that internal documents from the Office of Refugee Resettlement, an agency within the Administration for Children and Families, which is itself a division of the Department of Health and Human Services (HHS), indicate that HHS plans to pay for child separation by reallocating money from the Ryan White HIV/AIDS ProgramNMAC has been in direct communication with the HIV/AIDS Bureau (HAB) at the Health Resources Services Administration (HRSA). There are four (4) important pieces to mention:

  1. The funds that are allegedly being transferred are from Fiscal Year (FY) 2016 funds that were returned to HHS after not being spent by eligible Ryan White grantees.
  2. HAB staff was unable to state exactly how much FY 2016 funding was being transferred.
  3. However, it was very clear that those funds do not have any impact on the operation or schedule of Ryan White funding for FY 2018 or can the be used by any current parts of the Ryan White Program.
  4. The HHS Secretary has limited authority (generally referred to as “transfer authority”) to shift funding between accounts and programs when specified by law. That authority is limited to discretionary accounts and no appropriation may decrease its budget by more than one percent.

 

Appropriations Update
After a marathon 13-hour markup that touched on a range of contentious issues including the Affordable Care Act, abortion, and the Trump administration’s separation of migrant families at the border, members of the House Appropriations Committee voted along party lines (30-22 vote) to approve a $177.1 billion Labor-HHS-Education spending bill for fiscal year 2019. The panel ultimately adopted 18 amendments, with 14 coming from Democrats and another four offered by Republicans. The vote keeps the legislation on track for full House floor consideration, though several of its most controversial provisions would be unlikely to survive once action shifts to the Senate, where the 60-vote threshold requires support from some Democrats. For more information, READ → https://www.fiercehealthcare.com/hospitals-health-systems/house-lawmakers-take-aim-at-family-separations-during-hhs-appropriations

 

CMS Expected to Propose Cuts to More 340B Providers
The Centers for Medicare and Medicaid Services (CMS) is expected to expand the number of 340B health facilities that will be impacted by payment cuts for all physician-administered drugs. The proposed rule would slash Medicare Part B drug payments to 340B hospital outpatient facilities offsite by nearly 30 percent. The change is expected in the proposed 2019 Physician Fee Schedule Rule, which could be released as early as Thursday of next week. It would impact hospitals that qualify for the 340B program’s steep drug discounts because they serve a disproportionate share of low-income and under-insured patients. The Trump administration has cited the 2018 change in payment to 340B facilities as a move to lower drug costs. It estimated Medicare beneficiaries would save about $320 million on drug co-payments in 2018 because patients’ out-of-pocket costs are tied to what Medicare is billed for the drugs. The administration maintained that the lower reimbursement rate is closer to what hospitals pay for the drugs. Hospitals in the program say 340B was specifically intended to pay more because of the challenges of the populations they serve. For more information, READ → https://www.politico.com/newsletters/politico-pulse/2018/07/12/cms-expected-to-propose-cuts-to-more-340b-providers-276689


What You Can Do
TAKE ACTION: It is very important that our elected officials hear from us to protect federal HIV funding for HIV prevention and care.  Speak truth to power by sharing your personal stories with your elected officials. It is vitally important to meet to your federal elected officials when they are at home. If we don’t support and advocate for HIV funding and programs, who will?  Our movement cannot afford to stand on the sidelines.  Your U.S. Senators and U.S. Representatives need to hear from you. 

Also, MAKE SURE THAT YOU ARE REGISTERED TO VOTE in time for the primary and general elections happening this year!

Minnesota 7/24/2018
Wisconsin 7/25/2018

For more information, VISIT→ https://www.eac.gov/voters/register-and-vote-in-your-state/

Finally, PARTICIPATE IN THE PRIMARY ELECTION(S) in your state!!!

For more information, VISIT→ http://www.ncsl.org/research/elections-and-campaigns/2018-state-primary-election-dates.aspx

 

Opportunities for Input: Let Your Voice be Heard

Leading up to the US Conference on AIDS (USCA) in September, Act Now: End AIDS will solicit community input to inform the creation of an federal plan to end the epidemic. It’s important that we hear from affected communities from around the country in four primary ways:

  1. An online recommendation form at https://survey.co1.qualtrics.com/jfe/form/SV_eWde8Hsj4p0L4UJ . SUBMISSIONS DUE BY AUGUST 10TH.
  2. Online webinars covering key recommendation topics ( prevention and testing, care and treatment, structural interventions, research, viral hepatitis, sexually transmitted infections, opioids and the overdose epidemic, data and metrics.
  3. Web-based meetings and conference calls led by and soliciting input from specific affected communities
  4. An in person pre-USCA meeting to discuss an early draft of the plan to be held on September 5th in Orlando, FL

We invite you to use any and all of these options to provide recommendations for the plan. The online form may be used for as many recommendations as you want to submit. While individuals are absolutely invited to submit online recommendation forms, we also encourage submissions from groups.


What NMAC is Doing About It

  • NMAC remains vigilant in its advocacy to protect FY19 government funding and the existence of the social safety net.
  • NMAC releaseda Biomedical HIV Prevention “Blueprint” entitled Expanding Access to Biomedical HIV Prevention: Tailoring Approaches for Effectively Serving Communities of Color, a new report that establishes strategies to effectively use techniques such as Pre-Exposure Prophylaxis (PrEP) and Treatment as Prevention (TasP) to end the HIV epidemic in communities of color. The full report can be found by visiting nmac.org/blueprint.
  • NMAC will continue to meet with the administration around priority areas of people of color, pushing for greater access to coverage and making them aware of the challenges affecting people of color
  • NMAC is coordinating three of the ending the epidemic stakeholder calls for older adults, Native Americans, and Asian Pacific islanders.

INPUT REQUESTED: A National Community-Led Plan to End HIV/AIDS as an Epidemic

Since 2014, several U.S. cities, counties, and states have announced Ending the Epidemic (EtE) plans. What makes these initiatives unique– in addition to their ambition– is that they are driven by community leaders, including people living with HIV. In the spirit of the Denver Principles, these plans should be by and for those communities directly impacted by the epidemic.

Recently, the Trump administration has announced that it will be drafting its own national EtE plan by mid 2019. This obviously raises many concerns. First and foremost, can the drafting of such a plan possibly truly be led by the communities disproportionately impacted by the epidemic, when these very communities are facing direct attacks by the current administration?

In order to preserve the community-led spirit of EtE work, Act Now End AIDS (ANEA) – a national coalition of EtE leaders – intends to draft a community-led national plan. We will engage in a broad, multi-tiered process to collect as much information from impacted communities around the country as possible in order to accurately reflect what we need to end the HIV epidemic for all of us.

But for this process to work, WE WILL NEED YOUR HELP!

Below you will find more detailed instructions on how you, your organization, or your coalition can submit recommendations to be part of the national plan. Here are four main ways to provide input:

  1. An online recommendation form https://survey.co1.qualtrics.com/jfe/form/SV_eWde8Hsj4p0L4UJ. SUBMISSIONS DUE BY AUGUST 10TH.
  2. Online webinars covering key recommendation topics (prevention and testing, care and treatment, structural interventions, research, viral hepatitis, sexually transmitted infections, opioids and the overdose epidemic, data and metrics)
  3. Web-based discussions and conference calls led by and soliciting input from specific affected communities
  4. An in person pre-USCA meeting to discuss an early draft of the plan to be held on September 5th in Orlando, FL

***If conference calls or web-based opportunities to provide input do not work for you or if you do not have access to these methods of providing input, please contact Alex Smith, Senior Policy Manager for AIDS United, by email at (asmith@aidsunited.org) by phone at (202) 876-2840 to make arrangements for providing input.

We invite you to use any and all of these options to provide recommendations for the plan. The online form may be used for as many recommendations as you want to submit. While individuals are absolutely invited to submit online recommendation forms, we also encourage submissions from groups.

Web-based discussions and conference calls will be announced over the month of July. We invite you to sign up for the ANEA  listserv at https://groups.google.com/forum/#!forum/act-now-end-aids-distribution/join in order to keep up to date. We will also be providing more information on the in person gathering in Orlando.

We look forward to hearing from communities impacted by HIV from all around the country over the next few months as we engage in this ambitious national planning process. If you have any questions or concerns at all, please asmith@aidsunited.org. Together, we can ensure that community leads the way toward the end of the HIV epidemic.

 

Summary of the Learning Collaborative

Between June 24-27, 2018 NMAC’s Treatment Division hosted a Pre-Exposure Prophylaxis (PrEP) Learning Collaborative. This meeting was part of the culminating activity for our PrEP Education and Awareness Program. At the PrEP Learning Collaborative, nearly 20 leaders from communities of color, primarily representing southern and/or rural jurisdictions across the United States, met in Washington DC to discuss the story behind the racial and ethnic disparities that exist as it relates to PrEP uptake. This conversation took place at the intersection of identities (race, ethnicity, gender, and sexual identity) and socio-structural factors that influence where people play, work, and sleep. Stakeholders from various perspectives of the PrEP cascade (individuals who have been prescribed PrEP, PrEP Navigators, PrEP providers, community based organizations, health departments as well as AIDS Education and Training Centers) shared their perspective and expertise to collaboratively develop a framework to mitigate cost, service and access issues which vary at the local, state and federal level. In order to address these issues, clear and concise policies must be developed and implemented to allow to provide guidance and set long-term standards that will increase use of PrEP (a proven life-saving solution). Specifically, with the rise of HIV diagnoses among gay men of color, it is crucial to educate not only young Black and Latino MSM but also health navigators and service providers. They must learn about policies that facilitate access to PrEP, related services, cost, and access points. As a result of this Learning Collaborative, NMAC shall release a practice-based resource, in the form of a book, guide, or manual for community leaders and clinical providers on how to increase the use of PrEP among people of color at our 2018 Biomedical HIV Prevention Summit in Los Angeles, CA.

NMAC Recognizes National HIV Testing Day

National HIV Testing Day Statement

Today (June 27) marked National HIV Testing Day! I encourage our NMAC Community to use what this day means by holding ourselves and our loved ones accountable. Each of us should be committed to making sure that we know our status (AND that those we care about know their status).

According to the CDC, an estimated 1,122,900 adults and adolescents were living with HIV at the end of 2015 in the United States. Of those, 162,500 (15 percent) were not aware of their status. While this is a relative decrease, population specific disparities exist. For example, being unaware of one’s status is particularly prevalent in youth. According to the CDC, among people aged 13-24 with HIV, an estimated 51 percent didn’t know their status when they tested positive. Since communities of color, especially in the south, are disproportionately impacted by HIV, it is imperative that we harness our collective power to change this narrative.

Right now, we have the behavioral and biomedical tools to prevent HIV. Knowing your status is the first step in ending the epidemic. From there, the goal is two-fold: (1) in the event that an individual tests positive, we must link those individuals to care and set them on the path to treatment adherence and/or viral suppression; and (2) in the event that an individual tests negative, we should educate that person about pre-exposure prophylaxis (PrEP). This week, Representative Barbara Watson Coleman (NJ-12) introduced a resolution written in consultation with NMAC and several national HIV and STD partners which encourages the U.S. House of Representatives to support increasing PrEP awareness and education in an attempt to reduce the number of seroconversions in the United States.

As an organization, NMAC is committed to doing all we can to end the HIV epidemic in the near future. In addition to my professional advocacy, I’m personally committed to #DoingItMyWay. At my well women’s exam earlier this month, I intentionally requested an HIV test. Both after taking the test and receiving the results, I also encouraged my partner, several of my sorority sisters, and cousins to empower themselves by doing the same. Can I count on you to get yourself or someone you care about tested for HIV today? For more information about where to get an HIV test near you, visit: https://locator.aids.gov/.

Yours in the Struggle,


Sable K. Nelson
Policy Analyst
NMAC

Statement from HIV, STD & Hepatitis Policy Partnership on Meeting with CDC Director Robert Redfield


 

Statement from HIV, STD & Hepatitis Policy Partnership on Meeting with CDC Director Robert Redfield

 

Washington, D.C. – Last week, the executive directors of the National HIV, STD & Hepatitis Policy Partnership met with Robert Redfield, M.D., the new director of the Centers for Disease Control & Prevention (CDC). During our very encouraging meeting, the partnership advanced a series of requests and had a productive discussion about ending the HIV epidemic and the intersecting epidemics of STDs, viral hepatitis and opioid misuse. Dr. Redfield committed to an ongoing collaboration and a process that would seek broad community input around any newly developed strategies to end these epidemics. We look forward to working with Dr. Redfield and his team as well as other relevant federal agencies and the community in realizing these goals.


(L to R: Mitch Wolfe, Acting Director, CDC Washington Office; Paul Kawata, Executive Director, NMAC; Murray Penner, Executive Director, NASTAD; David Harvey, Executive Director, NCSD; Dr. Robert Redfield, Director, CDC; Jesse Milan, Jr., President & CEO, AIDS United; Michael Ruppal, Executive Director, The AIDS Institute; Jonathan Mermin, Director, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP))

 

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Important Happenings in HIV/Health Policy

Important Happenings in HIV/Health Policy

Week Ending: June 15, 2018
By: Matthew Rose & Sable K. Nelson

House Marking Up Federal Fiscal Year 2019 Appropriations Bill

On Friday, June 15, 2018 the Labor, Health and Human Services (Labor-HHS) Subcommittee of the U.S. House Appropriation Committee marked up its Federal Fiscal Year 2019 (FY19) Appropriations bills. Passing along party lines, the House’s Labor HHS spending bill would increase HHS’s budget by $1 billion for FY19. “Markup” is the process by which a Congress debates, amends, and rewrites proposed legislation. An appropriations bill is a piece of legislation that sets money aside for specific government spending. This is the third step in the Federal Budget Process:

Here are the funding levels proposed by the House Labor-HHS Subcommittee for key HIV/AIDS programs:

The Senate version of the Labor-HHS spending bill set top-line spending $2 billion higher than the House version. It is unknown at this time how those funds will be allocated for each of the Senate Labor-HHS spending bill will be marked up in the upcoming days/weeks.

 

NEXT STEPS: In the coming weeks, tentatively scheduled for June 26, the full House Appropriations Committee is expected to mark up the Labor-HHS bill. It is likely that several Representatives will propose amendments targeting federal funding for programs impacting minority health, rural health, Title X family planning, operation of supervised consumption facilities, and programs affiliated with the Affordable Care Act that the current spending bill proposes reducing or eliminating.

 

CDC Releases its 2017 YRBS Data

The Centers for Disease Control and Prevention (CDC) released its latest data from its Youth Risk Behavior Surveillance System (YRBSS). The YRSSS monitors six categories of health-related behaviors that contribute to the leading causes of death and disability among youth and adults, including:

  • Behaviors that contribute to unintentional injuries and violence
  • Sexual behaviors related to unintended pregnancy and sexually transmitted diseases, including HIV infection
  • Alcohol and other drug use
  • Tobacco use
  • Unhealthy dietary behaviors
  • Inadequate physical activity

Below is a table that summarizes the “Progress At-A-Glance for Sexual Behavior Variables:”

For more information, READ → https://www.cdc.gov/healthyyouth/data/yrbs/index.htm; https://www.cdc.gov/healthyyouth/data/yrbs/pdf/trendsreport.pdf

 

What You Can Do

TAKE ACTION: It is very important that our elected officials hear from us to protect federal HIV funding for HIV prevention and care.  Speak truth to power by sharing your personal stories with your elected officials. It is vitally important to meet your federal elected officials when they are at home. If we don’t support and advocate for HIV funding and programs, who will?  Our movement cannot afford to stand on the sidelines.  Your U.S. Senators and U.S. Representatives need to hear from you.

 

Also, MAKE SURE THAT YOU ARE REGISTERED TO VOTE in time for the primary and general elections happening this year!

For more information, VISIT→ https://www.eac.gov/voters/register-and-vote-in-your-state/

 

Finally, PARTICIPATE IN THE PRIMARY ELECTION(S) in your state:

For more information, VISIT→ http://www.ncsl.org/research/elections-and-campaigns/2018-state-primary-election-dates.aspx


What NMAC is Doing About It

  • NMAC remains vigilant in its advocacy to protect FY19 government funding and the existence of the social safety net.
  • NMAC will meet with hill staff to support amendments that are favorable for our programs.
  • NMAC is also working with lawmakers to address PrEP access and HIV in the military in a new partnership.

Why You Need to Attend USCA!

This year’s United States Conference on AIDS is very important because the federal government will discuss its plan to end the HIV epidemic in America during a USCA plenary, then hold a town hall to collect feedback from attendees. Everyone needs to come prepared to share their thoughts on what it will take to make this happen.

Biomedical HIV prevention has given us real pathways to end the epidemic. U=U, PrEP, PEP, and TasP have made it possible to consider the end. However, it can’t happen without a plan.

While NMAC is encouraged by this development, we are also very concerned about working with this administration. Can we put aside our differences and work together? NMAC hopes the value of planning to end an epidemic that disproportionately impacts communities of color greatly outweighs the difficult politics. This will be a true test of our leadership and there are no guarantees.

There are many communities and organizations who want and need to be part of the process. NMAC supports and encourages multiple efforts. We are particularly excited about our work with the Coalition to End AIDS. Working collaboratively on a document from AIDS United, we will bring a consensus statement to USCA.

Let’s encourage the feds to create a real plan, not some bullshit paper that sits on a shelf. What have we learned over the last 37 years? HIV sits at the intersection of oppression, discrimination, and stigma. When the world turned its back on us, we did not wait to be saved; we saved ourselves and the people we loved. For many years we suffered unimaginable pain as we buried more people than we remember. Now we have the opportunity to build the plan to end the epidemic. What should the plan say about us? While the federal government will have its own process, NMAC calls on them to make community a full and equal partner. The new strategy needs input from the many sectors and communities highly impacted by HIV.

What innovations can we bring along with our efforts to end the HIV epidemic? For example, every time there is an HIV test, let’s also test for STDsand Hepatitis. These sexually transmitted infectious diseases are drivers for each other. Working to reduce any of these infections supports our overall efforts to end the HIV epidemic.

This process has the potential to implode. Community needs to monitor and work directly with multiple federal agencies. The specific agency plans are probably more important than the overall federal plan. HRSA, CDC, HUD, SAMHSA, NIH, NIAID, OAR, and other federal departments need to be accountable to community. We must be at the table as these plans are built, implemented, and reviewed.

The 2018 USCA is all about putting together the federal plan to end the HIV epidemic in America. If you want to be part of this process, then you need to attend the meeting. Just because we ask to be part of the process does not mean we support the final plan. Our support is not guaranteed. It depends on the plan’s level of community engagement, real biomedical HIV prevention initiatives that speak to the realities of the communities highly impacted by HIV, and funding to make it happen. If it’s a good plan, then the 2019 United States Conference on AIDS and the 2019 Biomedical HIV Prevention Summit will focus on its implementation. This is a multi-year effort that needs your engagement from the beginning. See you in Orlando!

CDC SURVEY SHOWS MIXED RESULTS FOR YOUTH ON HIV, OTHER STDS

For Immediate Release
Contact: Chip Lewis, 202.853.1846, clewis@nmac.org

 

CDC SURVEY SHOWS MIXED RESULTS
FOR YOUTH
ON HIV, OTHER STDS

 

June 15, 2018 – The Centers for Disease Control and Prevention (CDC)’s Morbidity and Mortality Weekly Report Surveillance Summary on the 2017 National Youth Risk Behavior Survey (YRBS) shows mixed results for youth, especially for youth of color when it comes to HIV and other STDs.

“While there were encouraging signs across all races and ethnicities in terms of decreased sexual activity, it is alarming that condom use dropped so significantly” said Linda H. Scruggs, Director of NMAC’s Leadership Pipeline and Youth Initiative. “This report indicates that youth, particularly youth of color, are engaging in riskier behavior and are at greater chance of contracting HIV or other STDs. It also shows that, with a decreased use of condoms, we will need to look at biomedical prevention methods, like Pre-Exposure Prophylaxis (PrEP) and Post-Exposure Prophylaxis (PEP).”

“While there is no data in this update about LGBTQ youth, we know that data is coming soon and we look forward to seeing it,” said Scruggs.

“Through NMAC’s Youth Initiative and our Building Young Leaders of Color (BYLOC), we know that youth are eager to take a leadership role in the fight against HIV in their communities and with their peers,” said Scruggs. “The data from this update and coming updates gives them the information they need to effectively communicate with their peers and develop HIV fighting strategies for their communities.”

NMAC leads with race to urgently fight for health equity and racial justice to end the HIV epidemic in America. Since 1987, NMAC has advanced our mission through a variety of programs and services, including: a public policy education program, national and regional training conferences, a treatment and research program, numerous electronic and print materials, and a website: www.nmac.org. NMAC also serves as an association of AIDS service organizations, providing valuable information to community-based organizations, hospitals, clinics, and other groups assisting individuals and families affected by the HIV epidemic.

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