The Power of Language

NMAC will be closed today as we celebration Emancipation Day. On April 16, 1862, President Abraham Lincoln signed the Compensated Emancipation Act and freed more than 3000 slaves in the District of Columbia. However, slavery did not end in the rest of the United States until after the American Civil War, which lasted until 1865. In honor of this important day, here is an email from jessi Mona Cartwright-Biggs where she calls out NMAC. With her permission, I am sharing this email because it is a treatise on the power of language.

Howdy from Positive Women’s Network-USA Greater Houston Area, Texas Chapter. 

I am a proud NMAC Member. I joined when I first heard of you. You were kind enough to feature me in your Newsletter AND in my ignorance, I did not realize I was going public. Yikes! It’s all good now, no worries.

The benefits of being public with my status, as a Black American Senior Woman living with HIV has been so rewarding. I want to mention that the shame, guilt, and loneliness are no longer a part of my life today. The reasons for this positive [no pun intended] transformation are many. However, I ask you to understand one essential extremely important factor that continues to help me live the life I live today free of Stigmatizing Language. 

I am not sure you can identify with the words…  However, I can. I am not yellow. I am not brown. I am not green. I am not pus. Pus is an infection and the colors noted are colors of an infection. I am not infected. I am a clean Black woman living with the human immunodeficiency virus called HIV.

I was uneasy, disheartened and not happy to see and read such an abundance of stigmatizing language on your website… hurt.

I am asking for your purposeful & authentic support in promoting an END to the HIV epidemic. I am asking for an immediate project to review and amend the stigmatizing language being used on the NMAC website. Thriving with HIV is a place in a space that need not see, hear nor read stigmatizing language anywhere. I totally get that this will take time. As time changes please adapt and change the harmful language on the NMAC website, please. Thank you.  

Peace,
jessi Mona
PWN-USA GHA-TX Chapter
Co-Chair/Out Reach

Reading this email, I felt shame, anger and pride. Shame and anger because NMAC made a mistake, but so much pride in jessi Mona. She spoke truth to power and made her case as only a women living with HIV can. Calling someone out, even your friends, is central for how communities without privilege speak. If you don’t understand this reality, the experience can be alarming. If it’s not happening at your planning council meetings, then you are speaking to the wrong people. Now is not the time to only work with people who agree with your point of view. Leadership understands the importance of honoring the culture and values of the communities we need to reach to end the epidemic.

NMAC hopes community planning councils (or whatever they are going to be called) include orientation by local leaders from the communities needed to be reached and to understand that being called out should be embraced and not feared. For far too long, NMAC tried to make everything perfect. Our movement is too diverse and the culture of being called out is too engrained. Rather than making everything perfect, we’ve had to learn how to embrace the messy nature of our work and the reality that we can’t please everyone.

Our efforts to end the domestic HIV epidemic must reach communities that have eluded previous efforts. We cannot do things the same way and expect a different result. jessi Mona shared another important lesson when she wrote, “The benefits of being public with my status, as a Black American Senior Woman living with HIV has been so rewarding. I want to mention that the shame, guilt, and loneliness are no longer a part of my life today.” Too many suffer from stigma society places on people living with HIV. This stigma can lead to isolation and depression. NMAC believes depression is a major contributor to lack of adherence and falling out of healthcare. jessi Mona became part of a cause bigger than herself when she joined PWN-USA GHA-TX Chapter. Through this community of women living with HIV, she found the support that helped her to rediscover her power and voice. When you believe your life matters, then it’s much easier to do what is necessary to survive.

We are betting on a biomedical solution that will hopefully give us a “herd” theory of immunity, but that only happens when people are retained in healthcare and adherent to meds for decades. After I got her email, I immediately wrote back and said, “I am so sorry, yes, I will ask staff to review and correct.” jessi Mona’s final communication to me:

Oh, Mr. Kawata,
You are the best! Your prompt response and recognition of this important matter have touched me. I appreciate you. Thank you so much.
Peace,
jessi Mona

I shared this story because it put me in a good light, but it didn’t start there. You should also know that I forwarded these emails to staff and let them know our web page needs to be fixed immediately! Please check your web sites, e-newsletters, and social media feeds to be sure your language does not stigmatize the communities you need to reach. This is particularly important for federal HIV communications. As leaders of this effort, you set the tone for all of our work.

Yours in the struggle,
Paul Kawata

Reflections on the 2019 National HIV Prevention Conference – Part One

By Nikki Calma

I was fortunate to receive a scholarship from 50+ Strong and Healthy Program to attend this year’s 2019 National HIV Prevention Conference in Atlanta, GA. It has been a while since I attended this particular conference. I also was given the opportunity to attend last year’s USCA conference thru the 50 + Strong and Healthy Program.

From the moment I arrived at the hotel, it was obvious that people’s energy was really pumped and excitement was in the air. Although there was a big group of folks who arrived late for the entire conference, it was nice to observe folks from different states and organizations greet each other with warmth, catch up, and brag about what’s been going on in their respective programs. I also felt a great rush to see so many trans folks attend this year. Plus, I think there is something good to be said about having this conference in Atlanta and in these two amazing hotels, the Hyatt Regency and Marriott Marquis. Both can accommodate the amount of attendees in terms of conference needs and kept the attendees together, plus the hotel staff has been most courteous and unassuming.

Like last year at USCA, PrEP has been on people’s lips. More so this year at this conference, with a PrEP workshop or research or two that was being presented almost each day of the conference. This is such a good move towards all the initiatives being done by CDC and different cities, I think it is important to always remind ourselves that there are challenges that certain communities may face to access PrEP. For example, the trans community was the last to which PrEP marketing was implemented. Many trans folks have to prioritize their immediate needs around medical transition procedures and to add PrEP may be something that may not be a priority for many.

I was also concerned with all the push for PrEP uptake and information at this conference. It was obvious that many who just got into working in this field may be missing some of the basic history of HIV /AIDS and how we got to get to this day and age of this epidemic. It was nice and refreshing to attend the “Storytelling Sessions.” For me, it put that “human” factor for this conference. In these sessions, I heard amazing stories from people who have been impacted, living with, and worked with HIV. This was such a brilliant feature of the conference. I observed people who smiled authentically, moved with tears, and definitely inspired many. It fed the soul for those who was working tirelessly with their communities around HIV.

Even though we are in a day and age of advancement of treating HIV, for someone like me who loves doing this work and serving the community, it is important to have a strong reminder that the reason I got involved 25 years ago in HIV is because it affected me, my friends, my loved ones, and my community.

An Open Letter to CDC Director Robert Redfield

April 9, 2019

Dear Dr. Redfield:

One year ago, I wrote an Open Letter asking you to create a federal plan and the necessary funding to end the HIV epidemic in America. Thank you for your response and commitment to make this real.

Last week you spoke at AIDSWatch and got called out by community. Welcome to the family. As a person who gets called out frequently, I know it can be confusing. HIV disproportionately impacts oppressed communities. We speak up and call out leaders because we are hurting. Bob, you’ve worked on the frontlines of the epidemic in Baltimore, so I know you understand. If you didn’t hear it, I want to say thank you for speaking at AIDSWatch. As messy and challenging as community can be, we are the only road to ending the epidemic.

We come from very different worlds, yet this virus has brought us together to collaboratively figure out solutions to end an epidemic. That is the messy part of HIV; people who would normally not socialize have to come together to talk about some of the most intimate matters. I remember going to a retreat where I had to talk about sex with Dr. Jim Curran. I am not sure who was more uncomfortable. Jim blushed and stuttered as told me that in his day, he was a “hot” number. I could see it and I’m sorry Jim for outing you. He shared personal information because he knew it would build a bridge to someone with a very different life experience.

The solution to ending the epidemic is about building bridges with people who are different from you. It’s about understanding that race, gender, gender identity, and sexual orientation are more than classifications. They are the lens that shape our view of the world. Unfortunately, our contributions are often minimized because we are different. Understanding this dynamic is key to ending the epidemic. While the solution is biomedical, it has to happen in oppressed communities that don’t trust the government or the healthcare system. You may not believe your race gives you privilege, but the communities you need to reach would beg to differ. To reach people of color, you have to understand how race impacts our world and the choices we have to make. Just this week there is talk of bringing in the National Guard to St Louis to stop the violence. Let’s get real about what it means to end the HIV epidemic in this environment.

It is not just a matter of prescribing meds. Solutions must address the social dynamics that keep us separate. I get concerned that we will prioritize prescribing PrEP and not address the reality that only 34% of the people who start PrEP stay on their medication longer than 12 months. Why have one third of the people living with HIV fallen out of healthcare or are unaware of their HIV status? The solution is much more complex than handing out drugs.

Early in the HIV epidemic, we quickly learned that the medical model did not work for people living with HIV. As a result, our movement built new systems of healthcare. Thanks to the Robert Wood Johnson Foundation, the continuum of care model became the standard for HIV care and treatment. This new model was created by the HIV community because taking care of people we loved showed that our friends needed more than the medical model could provide. A network of social services like buddy programs, legal services, nutrition, and housing were key to our ability to help people live longer.

The HIV community had to innovate because the old models did not work for us. We cannot afford to go back to a medical model for the solution to end the HIV epidemic. We need solutions that reach gay men, particularly young gay men of color, the transgender community, people over 50 living with HIV, women, particularly black women and Latinas, and drug users. As we learned during the beginning of the epidemic, traditional models do not work when you need to reach oppressed communities.

The Positive Women’s Network, the National Working Positive Coalition, the Sero Project, and other PLWH coalitions fight for the value of “nothing about us without us.” These words apply to people of color, the transgender community, and people on PrEP. In fact, they apply to all the communities highly impacted by HIV. NMAC is concerned that decisions are being made without community. The format for the listening sessions does not allow for meaningful interchange. Leaders at the CDC are making decisions about how community planning will work, which interventions will be prioritized, and what type of capacity building will be used, all important issues that should include community. Limiting community input to community planning misses the whole point. Your process of developing a plan to end the epidemic should mirror the values and principles you ask of the community planning process. It should bring community and government together to make the key decisions.

I’ve been writing my Ending the Epidemic e-newsletter to speak indirectly to the decision makers. Please know how much I want you to succeed, but it won’t happen without us. We are about to attempt the impossible: to end an epidemic without a vaccine or a cure; to reach 400,000 PLWH who have fallen out of care or are unaware of the status and 975,000 more people who can benefit from PrEP. Many of the folks we need to reach are some of the most marginalized in America. They don’t trust the government because they believe the government runs the systems that oppress and discriminate against them.

Thank you for agreeing to speak at the opening of the 2019 United States Conference on AIDS. You should expect similar concerns will be raised; however, I know you will rise to the challenge. This year’s Opening will be staged like the Sunday Morning Talk Shows. You will be interviewed by a moderator. We are trying to get Don Lemon. Maybe we can’t get people to cheer for you, but they also don’t cheer for me. Every year I get called out. Federal leaders need to attend USCA because we cannot end the epidemic without reaching the communities that are highly impacted by HIV. The only way to get to them is through us. A smarter woman might say maybe we should work together.

Yours in the struggle,
Paul Kawata

Reflection on Personal Experience at the 2018 Biomedical HIV Prevention Summit-Los Angeles, CA

By Michelle Rollins, 50+ Strong and Healthy Scholar

I walked away from the 2018 Biomedical HIV Prevention Summit on December 2-4, 2018 in Los Angeles, California having learned so much.

Introduction:
As a HIV 50+ Strong and Healthy Scholar, I was impressed with the many interesting topics covered. I learned that through prejudicial thoughts and actions, governments, communities, health care providers, employers, family members and colleagues often contribute to HIV stigma. I learned that ending the HIV epidemic in black and brown communities will take big, bold, innovative, policy initiatives along with authentic engagement. U = U and PrEP are valuable tools all persons can use effectively and an ambitious, effective public awareness campaign is needed. Presenters shared the importance of promoting U=U and PrEP among black women, who present a perfect opportunity to break down obstacles to increasing awareness and reducing stigma. Campaigns like this can be successful if they are strategic and tailored to the context, values, language, and resources available to target audiences. I also learned that stigma leads to several other health-related problems amongst persons diagnosed with HIV/AIDS such as: loneliness, isolation, low self-esteem, identity crises and a lack of interest.

This year’s subject matter is particularly important for the citizens of Garden Valley district, where I serve, because our strategy includes crafting easy to understand language in our messages as we speak to the community about advancing innovation, (PrEP), and ending the HIV epidemic in African American and LatinX communities. We believe wording and content of the message depends on what it is supposed to achieve.

Advancing Innovation:
There is a lot at stake! Ending HIV/AIDS is a big-time accomplishment right up there with ending polio, and all other life threating diseases.

I learned how it is important to recognize and address clear patterns of healthcare disparities among African American women. In fact, our greatest challenge is reducing the deep disparity in health status of minorities and especially African American women and make PreP readily available. I learned we are not reaching those in need of another option ending the HIV epidemic in black and Latino communities and ultimately the US will take multifaceted innovative and intentional approaches.

The Garden Valley Neighborhood House mission is to support and promote the advancement of health innovation and technologies in the greater Cleveland, Ohio area by advising, educating, and training community activists in the establishment and legitimate aspects of the healthcare sector. Our view is that health promotion messages should focus on what can be gained by changing behavior, while detection behavior messages should focus on what could be lost if they don’t go through with the screening. I presented on the innovative activities of the Garden Valley Neighborhood House in the Community Corner at the Summit.

Ending the HIV Epidemic:
Incorporating U=U and PrEP into our conversation and communities daily will help break barriers, save lives this will increase awareness and will help to reduce stigma. I learned that People Living with HIV/AIDS not only face personal medical problems but, also social problems associated with the disease such as stigma and discriminatory attitudes. Public stigma and discrimination have harmful effects on the lives of people with HIV/AIDS. I also learned overall education and contact has a positive effect on reducing stigma for adults living with HIV/AIDS. However, contact has a better effect than education at reducing stigma for adults. I learned face-to-face contact is more effective than contact by video.

I learned getting people to change patterns of human behavior is no easy task. What I already knew but has practical application is, in natural world there are basically two kinds of change: evolutionary and disruptive.

Conclusion:
Evolutionary change is gentler form of change, typically less destructive but it takes a very long time. Disruptive change is fast, and sometimes necessary but can be extremely destructive or constructive. Do efforts to engage African American women in U=U and PrEP pursue evolutionary change or disruptive change? Perhaps, we need a combination of both. If things continue on their current path, African American women will be digging ourselves out of a ditch.

As a community advocate, HIV 50+ Strong and Healthy Scholar and 2018 Biomedical HIV Prevention Summit attendee, I learned part of my task is to make determinations how to approach changing a group of people’s behaviors in order to save lives. I firmly believe through education about PrEP and increasing awareness in communities at most at risk is the key.
In my lifetime there have been seven deadly diseases cured. As a nation, we work tirelessly to remedy major epidemics and illnesses. With determined effort and advancing innovation we can end the HIV epidemic.

HIV  Biomedical Conference Reflections

By 50+ Strong & Healthy Program Scholar Paul Grace-Neal

I was honored to attend the Conference in December 2018 in Sunny Los Angeles, California.  The Spirit and excitement was the attendees was very high. I witnessed a lot of people’s hope in thriving while living with HIV.  This is significant to me because when I came out as a lesbian in the early 99’s, I attended countless funerals of folks who were newly diagnosed.  Their diagnoses became their swan song. Diagnostic protocols and treatment were crude and harsh and folks had not be introduced to symptoms and prevention so the diagnosis was often too late.  Today, with the flux in clinical research and early intervention, people can thrive and not just survive.

I was honored to witness countless folks share their testimonies of being undetectable.  U=U. People of all ages from their 30’s to well above 50 could finally live and excel with minimal complications, less pills, and a longer life expectancy.   I was honored to celebrate with everyone. I struggle with the implications of this campaign however. I think it generates a false sense of security as the health care industry attempts to irradiate other STI’s such as syphilis which recently has reemerged to pandemic proportions.

During the conference, I had an awesome privilege of engaging participants on two panels, Trans As Trade, which explored how Trans men are often discounted and erased in research and the LGBT community.   It is frustrating that in research and marketing, information is often categorized with cisgender women simply due to similar research results. If Trans women and gay men are at high risk and Trans men intimately engage with these populations,  shouldn’t we be as equally at risk for acquiring HIV and other STIs? I also shared on a panel with my fraternity members on considerations for receiving medical care as Trans. I shared as a nurse who works at an organization who provides care to PLWHIV and as a Trans man who is medically transitioning and has experienced negative situations while admitted in the hospital after surgery.

PrEP offers a lot of hope for all HIV negative folks including Trans men but if research and marketing discount them, doctors are less likely to see Trans men as high risk and will not be willing to prescribe it.  This puts Trans men at a higher risk of acquiring HIV. This thought pattern and lack of funding for research is disheartening and further erased and stigmatizes Trans men at exponential proportions.

I was honored at the opportunity to participate and serve at this conference.  However, I simply wish there was a greater push for Trans men to be validated, respected, and involved in furthering HIV treatment and eradication.

I look forward to be part of other conferences of NMAC.  I love the high energy and compassion you bring to provide a safe place for HIV individuals to be heard and HIV negative individuals to learn.

The Summit from a 50+ Perspective

50+ Strong & Healthy Program Scholar Zeke Garcia attended NMAC’s 2018 Biomedical HIV Prevention Summit. He contributed this report on his experience.

Since the provenance of HIV’s existence in my life, I have fought the good fight to end this epidemic. The foundation of this work is providing an integrated, comprehensive approach to treatment support. I am dedicated and driven to maintain, encourage, and support prevention and HIV  treatment engagement. While at the recent HIV Prevention Summit in Las Angeles I experienced discussions, debates, questions, and concerns that promote fact based information, understanding, respect, and compassion for PLWH. My initial takeaway was the discussion on PrEP and the Trans community and data limitations, lack of physicians and healthcare along with the need for cultural components including interpersonal HIV, PrEP, PEP, and TASP strategies of prevention, streamlined for Trans enrollment in biomedical services led by human capital, visibility, and transparency. PrEP offers a new paradigm of choices, decisions, actions, and responsibilities.

We have an unprecedented opportunity to be catalysts for real change in the world; not just with our bodies, but with our minds and actions. It invites us to rethink HIV prevention and sex as tools for expanding love, information, and compassion, instead of promoting fear, shame, and stigma, encouraging all to be part of a revolution of community, integrity, and unity by engaging in informed discussion. I believe in the power of information and education to transcend and empower individuals and communities.

As discussed in a session regarding HIV and Incarcerated Populations, those going into custody tend to be at elevated risk of HIV; I believe PrEP within the correctional setting encompassing gender affirming care for Gay,Trans and Cis gender inmates with a history of transactional sex and sexual trauma are key elements of the prevention continuum challenge.

Being privy to the groundbreaking Undetectable = Untransmittable (U=U) plenary was a highlight for me as an educated HIV Positive Latinx Gay man; I am personally inspired by the campaign. The information of today’s poor historians of HIV is outdated, stigmatizing, and fear based messaging which has quenched opportunities to improve the lives of people living with HIV, dismantle HIV stigma, and prevent new transmissions. I have personally amplified my role as an HIV Educator,  Community Health Worker, and Long Term Survivor of HIV. I actively advocate through sharing science based information within my community. The foundation of the certainty that U=U offers freedom and hope for many people living with HIV and their partners opens up social, sexual, and reproductive choices I never thought would be possible. It is an unprecedented opportunity to transform the lives of people thriving with HIV. As a USCA/NMAC 50 + Scholar I trust that a strong public health awareness of universal access to diagnostics, treatment as prevention will save lives and bring us closer to ending the epidemic.

Zeke Garcia HERRS/PN/CHW
He, Him, His, Él

2018 National Ryan White Conference on HIV Care & Treatment

By Robert Riester, 50+ Strong & Healthy Program Scholar

This biennial conference is presented and funded by the Health Resources and Services Administration’s (HRSA) HIV/AIDS Bureau (HAB), and intended for comprehensive HIV care and treatment providers, Ryan White HIV/AIDS Program recipients and stakeholders, national partners, and people living with HIV. There were 4,000 attendees. (Note that PLWH are listed last).
Before the conference officially begins, HRSA holds business meetings for the Ryan White (RW) programs. As an active Planning Council member, I was invited to attend DMHAP business meeting for RW Part A. The meeting included updates on Policy Clarification Notices (PCNs), notably: 16:02, 18:01 and 15:02 (search hhs.gov website). They urge RW recipients and sub-recipients to collaborate. Among the examples of collaboration mentioned were NMAC’s Building Leaders of Color program including: National Trans Women of Color trainings and National Youth trainings, and CHATT for Planning Councils and Planning Bodies. The biggest news of the meeting was that the RW programs have full appropriation and that FY 2019 grant awards should be made in full before the end of the year.

The standing room only DCHAP “Let’s Talk About HIV & Aging” meeting included an AIDS Education Training Center overview, a RW recipient presentation, a Round Table discussion and Integrated Geriatric Care Models. Education and training of all care providers would be the major takeaway from this meeting. The HIV & Aging norms that have been extensively reported in recent years, due in large part to the efforts of NMAC’s 50+ Strong and Healthy program and Long-term Survivor (LTS) advocacy efforts, were presented with updated data and observations. The Round Table discussion now focused on long-term care, facilities, training of their staff and how LTS on fixed incomes would afford these services. HRSA officials suggested this would be a good talking point when the RW Program comes up for re-authorization (time TBD). Perpetual poverty, psychological age, poly-providers equals polypharmacy, rural/transportation, and dental concerns were also big issues discussed. Due to the overwhelming interest in this meeting, it was offered again as a session the same afternoon.

The Opening Plenary session rapid Takeaways: The release of the 2017 updated RW Data Report; 45+ age demographic is rising; 90.6 percent viral suppression rate for the 50+ age demographic; HRSA recognition of U=U; PrEP recommendation letter for Grade A; Rapid ART Program Initiative; Long acting ARTs and Antibody-Mediated Prevention being researched; Data needs to be leveraged; Strengthen 340-B; Opioid epidemic connection; Update the National AIDS Strategy to 2020; Carl Schmidt and John Wiesman to head Advisory Council to meet in March 2019; and Targeted geographic funding for Washington DC, Birmingham AL, and Atlanta, GA for demographic young African American males, Latinos and MSM who are at highest risk for HIV.

The PLWH Listening session with Dr. Laura Cheever was at capacity and was not limited to PLWH. There were many questions, with few answers other than suggesting re-authorization talking points. There were a couple of sessions on employing PLWH as peer advocates, but still left me with a “them” feeling.

Overall much was learned and attending with my fellow Planning Council members and Grantee staff was an invaluable bonding experience. Collaboration, provider education/training, data sharing and re-authorization talking points were the overarching takeaways for this advocate. Thank you NMAC 50+ Strong & Healthy program, especially Moises, Sable and Joanna for your support!

Policy Lead from Partnership of the Nation’s Leading HIV, STD, and Hepatitis Organizations Appointed Co-Chair of the Presidential Advisory Council on HIV/AIDS (PACHA)

Partner Logos - AIDS United, NASTAD, NCSD, NMAC, The AIDS Institute

Washington, D.C. – We applaud Secretary of the Department of Health Human Services Alex Azar’s announcement of new members of the Presidential Advisory Council on HIV/AIDS (PACHA) and the naming of Carl Schmid, Deputy Executive Director of The AIDS Institute, as a co-chair. Mr. Schmid is one of the key policy leads for the HIV, STD, & Hepatitis Policy Partnership, a coalition of five of the nation’s leading organizations focused on ending the HIV, STD, and viral hepatitis epidemics in the United States.

The Partnership is the driving force behind a new policy paper that lays out a clear roadmap for federal action to end HIV and the intersecting epidemics of STDs, hepatitis, and opioids in the United States. The paper is an essential framework for guiding PACHA’s work and meeting the goals of the National HIV/AIDS Strategy.

Secretary Azar made the announcement in a speech at the 2018 National Ryan White Conference on HIV Care and Treatment where he laid out a vision that the U.S. become a nation “where the spread of HIV/AIDS has been effectively halted, because every American with HIV/AIDS is receiving treatment and every American at risk of HIV is engaged in the right prevention strategy.”

In the past, PACHA was an invaluable body that provided a voice for the community to share advice, information, and recommendations with the Administration regarding the nation’s HIV-related programs, policies, and research. Mr. Schmid has been a leader in ensuring domestic HIV programs are fully funded and based on sound public policy for nearly two decades. He is a trusted expert in health care financing systems and is actively engaged in efforts to ensure that the Affordable Care Act meets the needs of people living with or at risk of HIV and hepatitis.

HIV is not a partisan issue and continues to be a public health threat that must have the right leadership and resources necessary to end new transmissions and ensure access to quality prevention and treatment for everyone who needs it.

The reconvening of PACHA and Mr. Schmid’s appointment represent an important step in ensuring our progress to end HIV and the intersecting epidemics of STDs, hepatitis, and opioids continues. We look forward to continuing to work closely with PACHA and the Administration, and wish Mr. Schmid well in his new role. Mr. Schmid will co-chair PACHA with Washington State Secretary of Health Dr. John Wiesman.

The next PACHA meeting is March 14-15, 2019 in Washington, D.C.

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AIDS United (AU), NASTAD, the National Coalition of STD Directors (NCSD), NMAC, and The AIDS Institute (TAI) are national non-partisan, non-profit organizations focused on ending the HIV, STD, and hepatitis epidemics in the United States by sharing resources to advocate for HIV, STD, and hepatitis programs and appropriations.

Being an HIV 50+ Scholar at USCA – Part Four

We asked several of the 50+ Strong and Healthy Community Scholars to share their USCA experience with us. This week, we have Robert Riester.

This was the third USCA to host 50+ Strong & Healthy Scholars and the first year to host Transgender and Youth Scholarship programs. These three programs are a direct result of inclusion for voices that have not been heard. The USCA conference has historically been a venue for the voiceless. Produced by the National Minority AIDS Coalition or NMAC and its very colorful and animated executive director Paul Kawata of National Association of People with AIDS or NAPWA fame, the USCA conference is never boring.

The opening plenary luncheon: Activism and The Intersection of Movements Fighting for Social Justice aptly featured none other than Larry Kramer of ACT UP and The Normal Heart fame via video due to his poor health. It was clearly a struggle for him to read from his own script, but it was obvious that his pen and his mind were still very strong. The other speakers were equally passionate for the times we live in now, featuring: Naina Khanna-Executive Director, Positive Women’s Network; Abigail Echo-Hawk-Director of Urban Indian Health Institute; Alicia Gara-Co-Founder of #BlackLivesMatter; Havid Hogg-Activist and Survivor of Marjory Stoneman Douglass High School mass shooting; and Richard Zaldivar-Founder of The Wall Las Memorias Project. The themes of racism, gun violence, health access and equity were beautifully balanced with a tribute to Sylvester by Disco Diva, Thelma Houston and here signature song ‘Don’t Leave Me This Way’, summed up the message perfectly.

Being one of the 50+ Strong & Healthy Scholar alums, my session attendance was focused on HIV & Aging. The first session was introduced by NMAC Executive Director Paul Kawata and Moises Agosto with a discussion about the importance of the Mini-Grant program, possible future Sponsorship of a Conference on Aging, and Internships. I learned something new at every session I attended, as I always do. I also reunited with some old ‘NMAC Family’ friends and made some new ones.
The Saturday plenary session: Trauma Informed Care with a focus on HIV & Aging was produced by and with 50+ Strong & Healthy alums. ‘The Survivor Monologues’ focused on five emotions that come with long-term survival: Uncertainty/Fear; Anger/Action; Emotional Rollercoaster; Hope, and Resilience. According to many accounts, it was one of the most powerful plenary session segments ever done at USCA. It left the attendees who were all proudly standing in ovation, with a feeling of inspiration and empowerment. Thank you, NMAC!

Robert Riester

Being an HIV 50+ Scholar at USCA 2018 – Part Three

We asked several of the 50+ Strong and Healthy Community Scholars to share their USCA experience with us. This week, we have Steven Manning.

Steven ManningMy experience with the 2018 USCA: First impression was the immediate connection I felt with recipients of the 50+ scholarships. The staff was amazing, they made themselves available to us, they guided us through the workshops, and they answered all of our questions. They went above and beyond my expectations.

As a result of this conference, friendships were made. We were able to share our own stories of living with HIV and exchange ideas and concerns. It was an honor to be a part of the 50 + scholars. We are a group of the HIV population that up until recently got overlooked. We are living longer and our needs are changing. Having workshops focused on this is really important. It was really beneficial not only to have these types of workshops, but to actually have the 50+ group. We were able to have our voices heard and to share our own personal experiences. This made the experience so much better. We have a story to tell and people are listening to us.

The workshops were geared towards the HIV aging population. NMAC recognized this and not only helped educate the HIV populations attending the conference, but, at the same time were able to educate the medical providers, case managers, and healthcare workers. We were given the tools to go back to our individual communities to help educate them about ongoing issues with the HIV aging population. The workshops brought much needed attention to people isolating and the need to reach out to them and the seriousness to this ongoing issue. There are so many important issues that need attention. Recognition was brought to the aging transgender population as well.

NMAC understands the needs of the community; they have made it their goal to do something about them. This was seen throughout the entire conference. This conference has and will allow me to take what I have learned and share it with my peers in the HIV community and outside of the HIV community.

I want to personally thank the staff and board members of NMAC for all of their hard work and dedication that made this conference possible. This USCA provides a safe space to connect, educate, and take this information out into our individual communities. NMAC understands the important issues, and makes it their mission to bring attention to it.

To summarize I felt very fortunate to attend this year’s conference. It was an experience that will last for a very long time.