2023 USCHA 50+ Scholar Reflections

Group Picture of NMAC’s 50+ Strong and Healthy Program

NMAC’s 50+ Strong and Healthy Program trains older adults living with HIV and other Long-Term Survivors to become leaders in their communities. The program offers opportunities for 50+ Scholars to participate in peer health education activities, design and implement mini grant projects, and participate in social media advocacy campaigns. 50+ Scholars are also invited to apply to join the National HIV and Aging Advocacy Network (NHAAN) to work with other advocates to advance an HIV and aging policy agenda.

The 50+ Program launches each year at the US Conference on HIV/AIDS, where 50 HIV and aging advocates are awarded scholarships to attend the conference and learn the latest information regarding HIV and aging. The following are reflections from some of the 50+ Scholars who attended USCHA 2023 in Washington, D.C.

 

Hispanic man over 50 LWH at USCHA 2023Bernardo Gomez – Los Angeles, CA

When I was diagnosed with HIV, I was 24 years old, and I thought I was never going to live past my 50’s. Now, I just turned 50 and have been living with HIV for 26 years. I still can’t believe how time passes so fast. In those 26 years, I learned how to maintain my health and change HIV treatment when it was needed due to side effects or intolerance.  When I had the opportunity to meet other people also living with HIV, and who can understand your barriers, you feel you are in heaven.   Other people have less opportunities accessing HIV services due to funding in their area. After attending USCHA 2023, I made a promise myself to keep taking care of myself, attend my doctor’s appointment and be aware of any health issues I may have in the future due to my HIV and aging.

 

Bill Hall – Seattle, WA

I always enjoy the stories I hear both at the Breakout Sessions and socially. They show our resilience so clearly, and that the hard times only gave us resolve to work and make our lives, and our communities lives, better as advocates for those who are HIV+ or living with AIDS.  This conference never fails to give me hope, and it re-energizes me to continue my work as an Advocate for the Native American Community here in Seattle.

 

Brenda Chambers – St. Helens, Oregon

One of the things that stood out for me most is I did not know that there was a cure in sight, and what are we going to do with all our health care problems that HIV has caused us after the cure. Also, in the session with older Americans and HIV where we were able to just talk about the problems that we see, I was heartened by the fact that we were able to speak freely. I heard about the problems that we’re facing in our state and everywhere in the country. And that there is no end in sight of this.

One other thing that stood out for me was that our partners in health care at the federal level really are listening to us especially our federal HIV/AIDS advisor.

 

 

Cecilia Ligons – Houston, TX

USCHA 2023 really rejuvenated my spirit to speak up and speak out. I am a person who has been living with HIV for 32 years and advocating on behalf of the HIV community since 2006, locally, regionally, and nationally. I have empowered/mentored so many people who have become well-known leaders in the field of HIV. I started to feel as if I had done my part and could now fade into the background and let the new boots take the reign.

USCHA 2023 has ignited a fire within me. I recall one of my most impactful workshops was “The HIV Possible” Centering Faith Based Resources and Direct Service WOC.” I honestly tried my best to sit silently and just listen. It didn’t take that long before my hand flew up and my mouth began to speak. I then began to realize that I can’t just sit on the side lines and do nothing. My life matters, my thoughts matter and deserve to be heard. There is still so much work to do in the field of advocating for people living with HIV. The struggle is real, and stigma is still strong as ever. The USCHA 2023 have taught me new ways to address some issues and still embrace many of the old school way of doing some things.

The networking opportunities at the USCHA 2023 were massive. I had about five to seven bags of information. I received so many contacts and business cards from all over the state regarding the work being accomplished in the HIV field. I passed out so many business cards myself. It has been two weeks since the conference and I am still sorting out emails, information, and business cards. I especially enjoyed the 50+ lounge. Although it was design to take a break from all the hustle and bustle of the workshops, I loved the way it was set up. The idea to have an organization to host the lounge every few hours was brilliant. I was able to relax and engage with others, which was fun and excited and created even more networking opportunities. Thank you again for this chance to attend such a grand and magnificent event. Thank you for allowing me to be a part of the 50+ cohort team. I especially want to thank you for reminding me that my voice is still needed at the table and my life matters.

 

Chuck Albrecht – Phoenix, AZ

As an HIV 50+ Scholar I appreciated the opportunity NMAC provided me to attend USCHA. My concerns regarding the lack of planning on a national level to address the needs and ever-growing HIV community in the 50+ community were confirmed. This has motivated me to become more active as an advocate to demand action from those in power.

On a more positive note, even while facing what seems to be insurmountable obstacles, the passion and commitment I witnessed on from Black women at the conference both enlightened me and gave me hope.

 

Clarence Ruff – Detroit, MI

The brother and sisterhood of fellowship with all the individuals present was inspiring and the warmth was overwhelming. All of this released the will to share and gain knowledge to bring back to our community viable and informative information concerning HIV and to eliminate stigma.

I hope to be a part of USCHA conference in 2024 to get the opportunity to help advance the knowledge concerning PLWH and those impacted. We are human beings who have a medical condition that allows us to live good and happy lives with our spouses, children, families, partners, and our community. We should not be exempt from being respected and to be treated with dignity as any other members of the human family.

 

 Two attendees at USCHA 2023Claude Bowen – Lithonia, GA

This year was particularly exciting as the role of Black women in this very long struggle was highlighted. Women have been in this struggle from the beginning and have often stood in the shadows of the men they support. To witness the acknowledgement and celebration of our sisters was an awesome spiritual event for me. Special because all along my journey as a long-time survivor of HIV, women have been my champions and cheering squad. They allowed me to cry, scream and even complain while holding me close and encouraging me to live as I healed. Every film clip, spoken word, song, photo and speech spoke to my being. My heart is filled with gratitude.

As a community advocate it is important and essential that I keep abreast of what is happening in the HIV Education and Prevention arena. Coming to USCHA is always an exciting time for gaining new information and enhancing the knowledge I already have. It also provides the opportunity to strengthen old bonds and the space to create new networks. The networking that takes place outside of the plenaries, institutes and seminars is where bonds are made, information is shared, and alliances are made. It was also very exciting to see the efforts of the older generation be recognized and their participation in the struggle as leaders, mentors, innovators, influencers, and advocates be encouraged.

 

Cynthia Rodgers – Birmingham, AL

I felt special and honored from the moment I read the acceptance letter for the scholarship. Upon my arrival to DC, I stood in an extremely long line to check into the hotel, and out of nowhere, Paul Kawata comes over and gives me the warmest hug and welcomes me as if I was a dignitary!  There were so many hugs and kisses in that long line, and it was absolutely beautiful.  Then there was the conference registration line. I was humbled by my less-than-optimal health.  There was so much I wanted to do and so many sessions I wanted to attend but my knees were aching, and I didn’t have the endurance to do as much as I wanted to do.  I am an incredible spirit housed in an aesthetically pleasing fine brown frame, and I am healthy with an undetectable viral load and a robust CD-4 count. I felt so celebrated and blessed just to be in the space with 4,000 amazing humans who share one thing in common – HIV.

 

Panel at USCHA 2023Franklin Sampley – Indianapolis, IN

I love being at USCHA.  I feel that being in that environment and surrounded by folks working in the field – be it education, client services, research, or a dozen other aspects – always inspires me to come home and to do more.  I find the time together even socially is energizing and so worth it.  This year I loved the plenaries – each one was different and so very good.  I thought the choir that sang was incredible.  Just knowing and hearing from people from such diverse backgrounds lets me know that folks still care and are still trying to make a difference for people living with HIV and to stop AIDS.  Being a part of the 50+ Cohort is so meaningful as it allows me to be around and meet several others whose stories are similar to mine.  People who have survived a long time and doing well and thriving.  I particularly love sitting together during the plenaries or spending time together in the lounge, as this is when you really get to know your cohorts and can share personal stories.  I hope this program is always a part of USCHA.

I love the workshops that address issues related to aging with HIV.  I think there are so many dynamics that these workshops really allow for us to learn new information and to find out things we should be aware of both personally and in dealing with others.  I in particular liked hearing from the Presidential Advisory Council on HIV/AIDS (PACHA) as I found the work being done interesting.  As a retiree of federal service after many years as a Government Analyst for the Social Security Administration, I found it interesting that they were not represented and brought this up to the panel.  I would like to see the disability guidelines for Social Security modified to address many of the elements that are now known about people aging with HIV.  It seems that all these various factions, including CDC are recognizing the issue of advanced aging, etc., but it is not being addressed at a critical juncture and that is when a person reaches the point of needing to go on disability.  The guidelines are still based on science that in some areas is outdated.  I did speak with a couple of the panel members who said they appreciated the information and would be pursuing the involvement of SSA in the panel.  So, I will look forward to seeing that happen.  I think it’s critical that every agency that can potentially impact our life be involved and SSA is a major player in that arena.  Where else would I ever get the opportunity to share this idea or information with PACHA other than USCHA?  So, thank you for this great opportunity.

 

Lilieth Conolly – Santa Monica, CA

The gathering of numerous Black women from different states, both near and far, was truly inspiring. It is a significant and long-awaited event that is much needed in the current climate of violence, particularly against Black women and young girls. Regardless of how we identify ourselves, whether it be cisgender, transgender, nonbinary, queer, heterosexual, lesbian, or any other label, it is crucial that we come together in order to make substantial progress in ending the HIV epidemic.

One of the most important lessons I took away from this powerful conference is that as women, we are stronger together than we realize. This is the time for us to accelerate the provision of healthcare, testing, and linkages to care. We must intensify our efforts in serving the most heavily impacted populations, such as the Black communities, specifically women whom we know are still to this day, disproportionately affected.  We must collaborate with other facilities, organizations, and Cohorts in offering medical and non-medical comprehensive services to these afore mentioned hardest hit communities.

My goal going forward, is to work hand in hand with these organizations to secure funding from initiatives such as the MAI and Black Initiatives funding, which will further aid our cause.

I would like to see us continue to forge ahead and form partnerships with smaller organizations to improve our chances of accessing the necessary funding.

By doing so, we can make a tangible difference in the fight against the HIV epidemic and ensure better health outcomes for all. I plan to do my part as a newly appointed member on the Supervisory Board of Los Angeles County Commission On HIV, fellow Advocate, and RWP Consumer.

This was my first or time attending the USCHA, and I truly appreciated due to the many informative, relevant, and engaging topics/sessions.  Thank you again for this wonderful and unforgettable opportunity.

 

Marcia Gullatte – Birmingham, AL

I was so excited to read the email that confirmed that I was selected to be a part of the 2023-2024 HIV 50 + Cohort at the USCHA Conference.  It is an honor to be among this esteemed group of individuals.  The members of this group are among the giants in our community nationally and now I am counted as a member.

When I arrived at the first plenary 50 + table, I realized that this group is a family. I saw how each member greeted each other and showed so much concern for each other. My heart is filled with gratitude, to know that I too am a part of this group.

On Friday night of the USCHA conference, it was a privilege to attend “Voices of Experience: Listening to Older Adults with LWH and LTS”.  The food was amazing. Meeting new members of my new family was delightful. I loved the movie.  I was enthralled with the listening session in which we had the opportunity to share our concerns about aging with HIV. I am waiting with great anticipation to see how the information gathered will be utilized in creating change to address these concerns. America was not prepared for us, but despite great adversity, we are here and thriving. Now that we were heard it is time for action. I am eager to see the change and to be a part of that change.

 

Mary Lucero-Hill – Denver, CO

There are no words to describe how I feel after attending USCHA 2023.  From the moment I saw the Washington Monument on one side and the Capital building across the grass on the other side while in the Uber to the hotel…I became part of history.  I literally shed tears.  I could not believe I was in the space where laws are made for our nation!  Overwhelmed does not even begin to describe my emotions in that moment.  And I haven’t even reached the hotel, nor the start of the conference!

The conference itself was overwhelming and overstimulating.  I was amongst the best of the best in the fight against HIV/AIDS.  All I could do was become a sponge to the experience.  I was able to interact with other professionals in the field (doctors, prevention staff, advocates, and educators); learning their lived and professional experience and how it relates to ending the HIV epidemic.  Being part of the 50+ Strong and Healthy cohort has afforded me the opportunity to learn more about the aging process and how best to help not only myself as I age with HIV, but how to assist my clients in thriving well.  As a PLWH, and a Case Manager in the field, all those who are professionals in the field should have the opportunity to experience this at least once.  This has been and will forever be a once in a lifetime experience that I will NEVER forget!

 

Two attendees posing with book at USCHASusan Baldridge – Smithtown, NY

The USCHA this year was in one word: Magical!

I choose the word magical because that is how everyday felt like at the conference. This year, over 4000 people attended the conference, and I must say that everyone I encountered was kind and nice.

To imagine a world where everyone got along and there was no judgement, no stigma, just pure genuine kindness, that is what this year’s conference was like. People walking around, talking about HIV without having to worry who heard and who saw them. Watching all the people gather in the hotel lobby, laughing and enjoying themselves was magical.

Then, there were the workshop’s, the workshops were so interesting and informative. I especially took interest in the Native American workshops. It’s nice being a Native American and to see workshops on Native Americans was awesome.

I really enjoyed my time at the conference, and I am looking forward to attending the next conference.

 

Victoria Graves-Cade – Brooklyn, NY

What a celebration of love, empowerment, energy, and commitment. A Recognition and Validation of the importance and contributions that Black Women have made to our society and our nation. The 4-hour train ride from New York City to D.C. allowed me the time to pause and take a moment to appreciate the opportunity this conference would have on my life and the lives of so many that would attend.

I hit the ground running catching up with my dear friend and ride or die for over 20 years, Denise Drayton (50+Scholar), to map out our schedule. There was so much to decide, and I was disappointed we would not be able to attend all the sessions. Every morning started in private prayer, breakfast with my friend and new people we met and then off to the schedule. I attended the workshop called, “Demanding Better: Advancing Quality of Life in the National HIV Response,” and the Opening Plenary with Congresswoman Maxine Waters. She had a rich message, though some verbiage used was outdated.

Every day was an absolute gift of speakers, panelist, exhibitors, and lounges that had us full of pride and hope. I am charged to join the HIV Caucus where I learned about MIPA (Meaningful Involvement People with AIDS) and things like “If they are not letting you at the table, bring a folding chair” and “Demand your Quality of Life.”  We were uplifted in song by Sweet Honey In the Rock and the always stellar, Yolanda Adams. Sheryl Lee Ralph’s message was clear and empowering.

We gazed on and celebrated our powerful Lifetime Survivors/Dandelions with awe and appreciation for our linked experiences, stigma, strength and hope for our futures together.

Truth telling, Conversations, Celebration, Healing and Womanhood just to name a few topics and spaces available throughout this magnificent conference. So many safe spaces to learn, share and grow.

I got a chance to take the DC Metro #70 bus to 633 Pennsylvania Ave to visit for the first time the only building owned and operated by Black Women on Pennsylvania Ave by the National Council of Negro Women, INC of which I am a Legacy Life Member. What an overwhelming joy it was to see.

The messages that stuck with me were many and so were the people I met, but I will name a few. “In Her We Trust”; “When you find that real love for yourself build a house”. “Take your power back-Live Life with Intention.”

Thank you NMAC and USCHA for seeing us Black Woman living long and vibrantly with HIV and putting us center stage.

Speaker at USCHATwo attendees at USCHA

 

Yolanda Ross – Houston, TX

I can honestly say that I am truly honored to be a part of this amazing cohort and attending the USCHA for the very first time. As an African American woman who is thriving and living strong with HIV and empowered to eradicate stigma attached to HIV/AIDS, I must say that this conference has motivated me to continue to speak my truth and celebrate women of color who are living with HIV/AIDS.

I learned so much about addressing issues in biomedical HIV prevention, aging, service delivery, and telehealth, prioritizing the issues of people with HIV and the next steps in ending the epidemic. I look forward to the next USCHA conference in 2024 and I hope I am able to attend once again.