HIV 50+ Mini-Grants Awarded

Congratulations to this year’s HIV 50+ Mini-grant Recipients!

HIV 50+ - Strong & HealthyThis year we awarded 11 mini-grants to Scholars to implement programs/projects in their communities related to HIV and aging. These Mini-grants focus on education, advocacy and empowerment among the HIV 50+ population. These Mini-grants will run from December 2019-May 2020. Below are the recipients:

  • Angel Hernandez – Arecibo, Puerto Rico
    Project Title: Celebrating Advocacy for 50+ Moving Forward Together
    Description: This program is targeted to 50+ persons living with HIV and their allies, with a full day framed in a Christmas Celebration in an open space where they will educate on HIV and Aging advocacy awareness beginning with self-advocacy on healthcare, promoting healthy habits with physical activities of aqua aerobics, zumba and goofy games which also promotes good mental health.
  • Art Jackson – Indianapolis, IN
    Project Title: B-FIT
    Description: The objective of the photo and social media campaign will be to highlight 12 members of the 50+ members of the community who have made amazing strides in changing the trajectory of HIV/AIDS in their community by becoming actively engaged in reducing stigma, bias, fear and barriers to care. This unique approach will allow these 12 ambassadors to offer perspectives from a large population whose voices are not shared.
  • Bryan Jones – Cleveland, OH
    Project Title: The Sankofa Initiative…Living Long and Strong with HIV
    Description: This project will develop a short 10-15 minute video that will highlight four people 50 and over living with HIV. Each one will address a specific issue and provide insight into overcoming the issue, including acceptance, stigma, isolation, and disclosure. The creative vehicle used to move the video along will be a phone call between a newly diagnosed person and several long-term survivors.
  • Dawn Breedon – Fort Myers, FL
    Project Title: HIV 50+ Peer to Peer Dine and Learn
    Description: The purpose of these sessions are to educate individuals 50 plus living with HIV about the latest information on U=U, Sexual Health, Living healthy with other illnesses, aging with HIV making money without losing Social Security benefits and socializing within the community.
  • Emilio Aponte-Sierraparetti – Palm Beach, FL
    Project Title: AMIGAS: Empowering Hispanic Women Living with HIV 50+
    Description: AMIGAS was created as a safe space for Hispanic women living with HIV. AMIGAS is a Spanish acronyms where each letter have its own meaning. The meaning of the letter “A” is “Amistad” (Friendship). “M” means “Motivación” (Motivation), “I” means “Integridad” (Integrity), “G” means “Generosidad” (Generosity), “A” means “Amor” (Love), and “S” means “Sabiduría” (wisdom). This group has been a source of support for women who are newly diagnosed with HIV and in shock for the diagnosis or women that have been living with HIV for a while and suffering because the HIV stigma.
  • Esther Ross – Greenville, NC
    Project Title: LAMPS: Leaders Advocating Mentoring Personal Growth and Support
    Description: The LAMPS Project aim is to impact the lives of underrepresented/marginalized People of Color Living with HIV (POCLWH) 50 years and older population. Empowering Women Living with HIV (WLWH) 50 years and older to see themselves as Human beings worthy of dignity, respect and of equal value is an unchallengeable method to reduce internal and external stigma.
  • David “Jax” Kelly – Cathedral City, CA
    Project Title: Striving to Thrive Town Hall
    Description: Striving to Thrive will be a town hall format featuring panels of speakers from the local Ryan White planning board (Riverside County), government agencies (ADAP, HOPWA, etc.), Featured discussion to include planning and implementing a ‘Standards of Care” document for people living with HIV over 50 to be used by planning bodies, clinics and community based organizations. The town hall will be scheduled for late March or Early April 2020.
  • Kneeshe Parkinson – Arnold, MO
    Project Title: Level Up-Women and Men FORUM/Healthy and Strong
    Description: To enhance, educate and empower the lives of those HIV 50+ diagnosed with HIV/AIDS to eradicate STIGMA and improve quality of life with a meaningful impact. In addition the program goals are to increase the knowledge for ally’s from the community and have meaningful involvement to help our fast track city initiatives efforts. FORUM – is a place, meeting or medium where ideas and views on a particular issue can be exchanged.
  • Miguel Delgado-Ramos – Cidra, Puerto Rico
    Project Title: Taking my Life to Another Level”- The “LleVaN”Project
    Description: The purpose of the “Taking my Life to Another Level” Project is to improve quality of life of HIV + persons, mainly HIV 50+ in terms of how to take their life to another level through self-reflection, self-help and self-empowerment by addressing the six dimensions of wellbeing model as proposed by the National Wellness Institute and promoted by SAMHSA.
  • Nancy Shearer – Santa Monica, CA
    Project Title: Intergenerational Buddy Support Program: Celebrating a Lifetime of Resiliency
    Description: The purpose of this project is to develop a program of intergenerational mentorship between older adults living with HIV and younger adults aged living with HIV. The project’s purpose was informed by two overarching goals: (1) to provide an opportunity for social engagement for older adults living with HIV, thus addressing the psychological and physiological threats of loneliness and isolation, and (2) to expose younger HIV-positive individuals to meaningful mentorship, allowing for the destigmitization of HIV as a general concept and discussions centered around resiliency, education, and prevention through safe practices with partners.
  • Robert Cornelius – Chattanooga, TN
    Project Title: Survivors Network
    Description: The goal of this project is to connect individuals who identify as both, aging and have an HIV/AIDS diagnosis, with the education and resources needed to learn valuable life skills. The information will help them continue to grow into the successful survivors that they are! We hope that with this information, it will empower and encourage the population to serve and encourage the younger generation with peer support and history of the virus

This World AIDS Day NMAC will Host Two Events

This World AIDS Day NMAC will Host Two Events
Congressional Briefing
Biomedical HIV Prevention Summit

NMAC will host a Congressional Briefing on the 2019 U.S. Conference on AIDS on December 5 at 11 AM (Eastern). It will be live streamed on Facebook for people who cannot attend (watch future newsletters for more details on where to watch). Dr. Fauci will brief Congress on past achievements and future steps that must be taken, and thanking them for their continued support.

NMAC will also host the fourth annual Biomedical HIV Prevention Summit on December 3-4 in Houston, Texas. Over 1,000 people will join us for this important meeting focused on the developing research, community education, and access to the myriad of biomedical tools to avert HIV infection, i.e., PrEP, PEP, and U=U. We are proud to welcome Houston’s Mayor, Sylvester Turner. The program book is 35 pages. Please visit the Summit website to download.

This year’s Summit will continue to address the tough issues facing our movement. The Opening Plenary asks the question, “Can We End the HIV Epidemic in Women Without Focusing on Black Women?” NMAC fights for health equity for all women. However, we recognize that 60% of all women living with HIV are Black cisgender women who primarily acquire HIV through sexual contact. NMAC firmly stands by our mantra that we must Lead with Race. This health inequity is really an issue of racial injustice that must end.

NMAC is actively partnering with the CDC to ensure that transgender women and non-gender conforming male-bodied persons are not classified with gay men. We cannot accept incomplete  epidemiological data and anecdotal evidence about this impact of HIV on T/GNC persons. Some studies point yield that 50-80% of Black transgender women are living with HIV. One of the highest rates of HIV in America for any subpopulation. The needs of T/GNC people are unique and must be distinguished from MSM.

The plenary will also have a memorial to all the transgender women who were killed this year in America who were primarily Black women. Violence is a growing and uncontrolled epidemic in the transgender community and NMAC believes we can’t end the HIV epidemic until we address the violence against transgender and gender non-conforming individuals.

Other plenary topics include a Federal Update from Harold J. Phillips, Senior HIV Advisor and Chief Operating Officer of Ending the HIV Epidemic: A Plan for America.  Joining Harold are Jhetari Carney, MPH from HRSA; David Purcell, JD, PhD from CDC; and Neeraj Gandotra, MD from SAMHSA.  The closing plenary will look at HIV Criminalization and Biomedical HIV Prevention. It will feature Nikko Briteramos, Kamaria Laffrey and Lambda Legal’s Scott Schoettes.

NMAC is grateful to all of our sponsors of the Summit including Presenting Sponsor Gilead, Benefactors Avita Pharmacy and ViiV Healthcare, Supporters Curant Health and Walgreens, with our Allies In The Meantime Men’s Group and Janssen.

Yours in the struggle,
Paul Kawata
30 Years of Service

Paul Kawata

Remembering Transwomen Lost

This year, 22 transwomen of color have been murdered in the United States. Enough is enough!!! The growing violence against transwomen of color is a serious concern that we must address collectively as a community. We can no longer watch on the sidelines, year after year, as the number of transwomen of color victimized by violence continues to increase.

The Transgender, Gender Non-confirming, and Non-binary (TGNCB) Constituent Advisory Panel in partnership with NMAC and the Trans Latina Coalition will hold a memorial during the Biomedical Prevention HIV Prevention Summit this year in Houston, TX. The memorial will honor and remember the transgender women of color who have been murdered this year as well as our other transgender family members who perished too soon.

If you are attending the Biomedical Summit this year, we invite you to participate in our memorial. As part of honoring those we have lost, we will erect an altar of remembrance that will remain on display throughout the Summit. Altars of remembrance derive from the Mexican tradition known as Day of the Dead, or Dias De Los Muertos, where loved ones remember those they have lost by placing photos, candles, and other items on an altar that reminds them of their loved ones. If you have lost transgender people in your personal life, we invite you to bring item(s) to the Biomedical Summit. We ask that you only bring an item(s) to the altar that you do not wish to keep.

NMAC’s ultimate goal is to erect a standing altar that we can add to annually and possibly take on tour in the future!

We know that an altar will not bring back those we have lost or ease the pain of grief; however, we hope this memorial truly serves as a vehicle to honor and remember our loved ones. We also hope this altar will serve as a visual reminder of the danger trans people face on different fronts, and the work we still need to do to address the challenges that threaten the life expectancy of trans people across the country.

The Transgender Altar of Remembrance will be located in the exhibit hall through the duration of the Summit. For more information, contact us at conferences@nmac.org.

Yours in the Struggle,

The TGNCB Constituent Advisory Panel

What’s Happening in San Francisco?

San Francisco may soon be a “proof of concept city” that biomedical HIV prevention works. In 2018 there were 197 new cases of HIV, down from a high of 2,300 new cases in 1996. The city significantly reduced its community viral load by supporting people living with HIV to become Undetectable and increasing the number of people on PrEP. SF went from 4,400 people on PrEP in 2014 to 16,000-20,000 people in 2018. The large increase in the uptake of PrEP directly aligns with significant annual decreases in new cases.
While San Francisco is moving to become one of the first “proof of concept” cities, it is also worth noting that in 2018 the number of new HIV cases in the Latinx community surpassed San Francisco’s White community for the first time.
While the Latinx community makes up 15% of the total population of SF, they are now the majority of new HIV cases. While this is only one year of data, what are the lessons? Can the shift in demographics for SF’s new HIV cases be attributed to the differences in PrEP uptake? About 18% of the people on PrEP in San Francisco are Latinx versus 16% for Asians, 9% for African Americans, 43% for White, and 19% for other.

Or maybe the surge in Latinx cases has more to do with the economics of the city. San Francisco has the highest density of billionaires of any city in the world. Economics are pushing African Americans and Latinx out. In a city that is set-up for the rich, what happens to poor people, particularly poor people living with HIV? NMAC’s concern is that this economic divide will end the HIV epidemic in rich communities while the poor are left to fend for themselves.

This will be the challenge for ending the HIV epidemic (EHE) plans. While we need to significantly increase the number of people on PrEP in all communities, plans need to target the communities that have eluded previous efforts. With Latinx PLWH making up the majority of new HIV cases in SF, are the majority of HIV services for the newly diagnosed provided by Latinx providers? Are there Latinx leaders in key administration positions in community-based organizations, health centers and the health department? Is San Francisco ready to manage this demographic shift in its HIV epidemic?

All jurisdictions building EHE plans must look at how they are working with and including the Latinx community. Plans are required to have comprehensive community consultations with all the communities highly impacted by HIV. Disruptive innovation asks that we don’t bring the same faces to the table. Our efforts must reach beyond the status quo because we have to enroll communities that have eluded previous efforts.

Reaching the Latinx community means having leaders from the Latinx communities planning and facilitating the meetings that target their community. The same holds true for all community consultations: leaders from the designated community should be in the driver’s seat. This is where the solution gets tough, as certain people and communities must let go of power.

Often I am not the right person to speak up. Understanding your privilege means understanding that you don’t have to speak first. In fact, sometimes you don’t have to speak at all. Just because you can doesn’t mean you should. There are too many in our movement, me included, who think we have the answers. This is why ending the epidemic will be a true test of our leadership. Will men let women speak? Can the cisgender community share leadership with transgender and gender non-conforming individuals? Can African Americans, Latinx, American Indians, Alaska Natives, Asians, and Pacific Islanders work together and not be pitted against each other? And what about White people?

While these issues are so much bigger than HIV, they are central to our EHE plans. Can our movement expand to incorporate gay men of color, Black women, the transgender/gender non-conforming community, and people who use drugs into leadership positions? That’s what it’s going to take to end HIV: sharing power and letting other people lead.

Yours in the struggle,
Paul Kawata
30 Years of Service

Paul Kawata

Youth Initiative Update

By Charles Shazor, Associate Program Manager

NMAC’s Youth Initiative is in high gear as our Youth Scholars prepare to implement their World AIDS Day projects. We are excited to announce that NMAC has recently approved each Youth Scholar’s application for a mini grant of $500 to assist them with their World AIDS Day project budgets. This mini grant award is a key investment to NMAC’s Youth Scholars as a “thank you” for their hard work and commitment to providing education and awareness in regard to the various stigmas surrounding people of color living with HIV in America.

The Youth Scholars have been paired with a Youth Initiative Council member to serve as a mentor through the on-site training, planning, and implementation of their World AIDS Day projects. The Youth Initiative Council is composed of five (5) seasoned Youth Scholars from previous years of Youth Initiative programming who have shown exceptional leadership and advocacy in their respected HIV communities. We strongly believe that this method of mentorship not only assists our new Youth Scholars to effectively complete their World AIDS Day projects, but also continues to build the skills and leadership of our Youth Initiative Council as an additional investment in their futures.

With a little over a month remaining before World AIDS Day (December 1), NMAC’s Youth Scholars and Youth Initiative Council are working tirelessly to bring their World AIDS Day projects to life. Together, NMAC’s Youth Scholars and Youth Initiative Council will present key concerns and challenges in creating a shared vision to identify meaningful solutions in the HIV epidemic.

Youth Initiative 2019 USCA Experience

The Youth Initiative Youth Scholars had the opportunity to participate in a three day in-person training to prepare them for their World AIDS Day community projects. The in-person training was conducted through closed sessions during the 2019 USCA in Washington, DC. During this time the Youth Initiative Scholars were given key tools and learned the skills needed through mentorship, informational sessions, peer to peer education, and intergenerational leadership to partner with local HIV organizations. The Youth Scholars will use the skills that they learned during the 2019 USCA to design an HIV-related project for World AIDS Day (December 1). With the assistance of NMAC staff and the Youth Initiative Council, the implementation of their projects will be based on the Youth Scholars’ interests in HIV care and/or prevention that has the greatest impact in their hometown and social media networks.

YI Scholar Quotes from 2019 USCA

What Did You Like about USCA?

“Meeting the other Youth Scholars and being able to experience seeing a powerful protest. It was definitely an eye opener connecting with the others and being able to feel the comfort of being comfortable in your own skin.”

“What I like most about USCA, is that everyone around me is open and it’s comfortable about being who they are and what they went through and took me in like family. I loved how much I have learned. USCA gave me a stronger voice.”

“I loved the bonding and interactions that were made. NMAC afforded us a great opportunity of exposure to so much and I left with great connections and future partnerships.”

“The opportunity to get to meet so many inspiring young leaders from around the country and getting the chance to become inspired in so many ways.”

“I really was able to enjoy hearing and being able to take in other people’s stories. Being able to hear people like me made me feel like I wasn’t alone anymore. Like other people understood me and I definitely needed that.”

Hot Asian Guys

Here is the infamous PrEP ad that was rejected by Instagram. Created by APICHA (Asian Pacific Islander Coalition on HIV/AIDS) Community Health Center. According to Instagram, the ad was rejected on the grounds that APICHA “hadn’t been authorized to run ads about social issues, elections or politics.”

While there was lots of press about why Instagram, a subsidiary of Facebook, would cancel the ads, what got lost in the discussions were the hot Asian guys. For the record, Therese Rodriguez is the leader of APICHA and a long term NMAC board member.

PrEP education campaigns, even ones that are rejected by Instagram, will be key components of our initial efforts to end the epidemic. Jurisdictions will be asked to significantly increase the knowledge and acceptability of PrEP in communities that are hardest hit by HIV, especially communities that have not seen the benefit of the science.

What makes a good campaign?

  • Messenger is as important as the message
  • Culturally relevant
  • Speaks to the values of the recipient
  • Nonjudgmental
  • Sex positive

There are not lots of PrEP campaigns that target Asian and Pacific Islander gay men. As a result, this campaign stands out because the images speak to a very specific community. However, it is not a matter of just substituting the photos. Unfortunately, it is much more complex.

Who Should Local Jurisdictions Target For PrEP Programs?
The federal plan hopes to enroll 900,000 more people on PrEP. Basically, that means everyone it can reach; however, jurisdictions will need to prioritize where to expend resources. Health centers, FQHCs, STD clinics and private doctors should target everyone. STD clinics are particularly important because people who get STDs should prioritized for PrEP education.

Federal funds for PrEP education and outreach needs to reach the communities that are hardest hit by HIV but have not yet received the benefit of PrEP. These communities should be determined by the community viral load for zip codes in the jurisdictions. The zip codes with the highest community viral load need to be triaged and prioritized for PrEP and U=U programs. Science, particularly epidemiology, needs to be the determining factor for what communities are prioritized.

This is where the fight starts…

Can we at least agree that not everyone needs to be equally prioritized to use PrEP? Programs should target people who are sexually active in a “sex positive” manner. Jurisdictions will hopefully prioritize zip codes with the highest community viral load. However, not all the people in that zip code are the same. How should jurisdictions determine who to prioritize?  Follow the science and prioritize communities with the highest viral load, particularly those communities that have not seen the benefit of PrEP.

What does this mean in practice? Some PrEP programs need to target everyone who is sexually active or injects drugs. Other programs need to prioritize the communities that are highly impacted by HIV but have not seen the benefits of the science. Metrics for successful PrEP programs must be finalized, particularly programs that can reach thousands, if not tens of thousands of people. The federal plan hopes to get 900,000 more people on PrEP. To reach those numbers, programs will need to expand in ways that are still to be determined. In the past Ryan White programs were able to meet the increased demand by retooling the service delivery model. Can HIV care, treatment and prevention systems retool to accommodate 500,00 more people living with HIV and 900,000 more people on PrEP?

None of this is easy. That is why I was happy looking at hot Asian guys. Thank you APICHA for making me smile. I salute your important work!

Yours in the struggle,

Paul Kawata
30 Years of Service

Paul Kawata

End the Epidemic among Young People

National Library of Medicine & NMAC Youth Navigator Program
Submitted by Terrell Parker

As our constituents move closer to developing their ending the epidemic plans, NMAC is committed to ensuring we prioritize groups and communities currently experiencing the heaviest burden of new HIV transmissions and those who despite advances in HIV treatment are not reaching viral suppression. One group we must prioritize and center in our ending the epidemic efforts is our youth population.

NMAC is proud to continue its Youth Navigation Program, in collaboration with the National Library of Medicine (NLM). The project will continue to engage HIV navigators who tailor their services for youth populations (13-24) and provide tailored HIV/AIDS information resources, tools, and technical assistance and training. During this project, NMAC will work with its existing youth focused Advisory Board to build upon lessons learned to further work to eradicate HIV amongst youth.

Why Do the Youth Navigators Matter?
The Youth Navigation Program is based on the concept that people in communities trained as HIV navigators can be affective at eliminating barriers to the timely prevention of HIV as well as helping people living with HIV reach viral suppression. According to the CDC “In 2017, youth aged 13 to 24a made up 21% (8,164) of the 38,739 new HIV diagnoses in the United States and dependent areas. Youth with HIV are the least likely of any age group to be timely linked to care and have a suppressed viral load.” Also, the CDC’s recently released 2018 Sexually Transmitted Disease Surveillance Report found that rates of reported gonorrhea and chlamydia were highest among teens and young adults. As new HIV/STI transmission rates for youth are at an all-time high, effective youth navigation is needed now more than ever. We must increase our efforts to prevent HIV among youth.

Meaningfully Involved Community
The Youth Navigation Program will continue to engage HIV navigators who tailor their services to the youth populations (13-24), develop tailored HIV/AIDS information resources and tools, and provide training and technical assistance on NLM and other reputable HIV/AIDS resources to navigate youth through the health care management spectrum of HIV/AIDS.

Through this partnership, The New ERA: YNP will accomplish the following:

  • Understand barriers and provide the resources and tools for HIV Navigators that serve the youth on HIV prevention, treatment and the value of research;
  • Improve self-efficacy and health literacy by youth and HIV navigators on obtaining quality, accurate and authoritative HIV/AIDS information resources;
  • Increase the knowledge, skills, awareness and use of NLM HIV/AIDS Resources (AIDSinfo®/AIDSource) for HIV navigators;
  • Refine the branding campaign to further promote “The New ERA of HIV: Youth Navigation Program;” and
  • Develop and disseminate training materials in three areas; Navigator and Peer education, Youth Client Outreach, and PrEP Adherence and develop a Youth Navigation Toolkit as well.

What’s Next?
We understand that youth face compounding issues making it more difficult to access prevention and care services. Training and development for navigators will be pivotal to ending the HIV epidemic among young people. Addressing HIV in youth requires that we give young people the information and tools they need to reduce their risk, make healthy decisions, and get treatment and care if needed. Disparities in access to accurate HIV/AIDS information, misconceptions, and concerns around stigma among youth require NLM to respond to the changing HIV/AIDS environment – changes in both the demographics of the epidemic, as well as in technology.

Additional information on the 2020 Youth Navigation Program Advisory Board Consortium will be forth coming! As we look to the future of health with a person-driven model of care, it is even more critical for health information to be precise and tailored for those who need it most.

This is Where the Fight Starts

NMAC urgently fights for racial justice and health equity. Health equity means everyone has access to quality healthcare and the medications needed to live long healthy and happy lives. Healthcare is a right and not a privilege. Justice is about prioritizing those communities with the greatest need. The opening plenary for the 2019 Biomedical HIV Prevention Summit will ask the question, “Can We End the HIV Epidemic in Women, Particularly Black Women?” There was some push back to that announcement: “What about Latinas? What about all women? Why only hold out Black Women?” The fact is that Black women account for 60% of all the women living with HIV in the United States. This question highlights the racial justice struggle to end the HIV epidemic. NMAC fights for equal access to HIV services and meds for all women, and we want justice for Black women. The burden of the HIV epidemic on Black women calls out for justice.

NMAC wants everyone to have access to PrEP. When 75% of the people on PrEP are white, it becomes an issue of racial justice. PrEP programs that reach highly-impacted communities of color must come from and be culturally responsive to those communities. Unfortunately, it is not just a matter of switching white faces for people of color. PrEP programs that reach highly-impacted communities of color must come from and be culturally responsive to those communities.

We also need to talk about justice for the transgender community. As long as the CDC continues to classify transgender men and women with gay men, we will never end the HIV epidemic in the transgender community. How can you end what you do not know? If we don’t know the number of transgender men and women living with HIV, how will this initiative know it is successful? NMAC questions the scientific accuracy of CDC’s HIV epidemiological profiles because of this long-held practice. At its core, this is not good public health practice and something that the CDC can and should change.

HIV funding must address equity and justice. NMAC believes that all communities should have the resources needed to end the HIV epidemic; however, as a matter of justice, we believe the resources need to prioritize the communities that are hardest hit by HIV. In the United States, gay men share the largest burden of HIV. As the federal government looks to target resources geographically, HIV prevention and care efforts need to target the communities with the greatest burden of HIV: Black/Latinx/American Indian gay men, Black cisgender heterosexual women, people of transgender experience, and drug users. Funding priorities need to follow the epidemiological profile of that jurisdiction.

This is where the fight starts.

We are all hopeful and thankful for new resources, but will the money get to the organizations that can reach the communities hardest hit by HIV? NMAC hopes the G-57 jurisdictions will put out requests for funding that speaks to community and their strengths. Too often awards are won by organizations who can afford expensive grant writers, but could never reach the most affected subpopulations. NMAC will work with the G-57 to identify best practices that support community responses.

Agencies and health departments that implement new programs should be required to hire people from the communities that effort hopes to reach. If you want to reach the transgender community, then you need to hire transgender people. If you want to reach black women, then you need to hire black women. If you want to reach drug users, then you need to hire people with experience using drugs. If you want to reach people over 50 living with HIV, then you need to hire people over 50 living with HIV.

While this might seem self-evident, you would be surprised how often it does not happen. Now is the time to take a census of who works at the health department, community health center or community-based organization. Does staff reflect, represent, and have senior staff from the communities the work needs to reach? NMAC does not mean to imply that you need to get rid of anyone but, when there are new hires, who gets the job? Now is the time to correct any past challenges and build a work force that can speak the communities this effort needs to reach.

Our work to end the epidemic must be viewed through a racial justice and health equity lens. It is more than retention in care and adherence to meds. It’s retention in care and adherence to meds in the communities that are hardest hit by HIV. NMAC will fight to ensure that all communities have access to the health care and the medications needed to live long healthy and happy lives. We will also fight for justice to make sure that the communities hardest hit by HIV are prioritized. The color of your skin should never be a determining factor for who acqires HIV or any other disease. In the words of the late Congressmen Elijah Cummings, “we are better than this!”

Yours in the struggle,

Paul Kawata
30 Years of Service
Paul Kawata

 

 

 

 

 

50+ USCA Scholars Share Their Stories

Several of our 50+ Scholars at USCA have shared their stories of what attending the conference meant to them. We’re happy to share them with you now.

Emilio Apontesierra-Paretti
My experience with the 2019 USCA was very informative, a great networking strategy, and a good rollercoaster of emotions. USCA not just gave me tools about how I can help to End the epidemic in their memory, but it gave me hope and the opportunity to speak up. Being one of the 51 scholars of this year 50+ Strong & Healthy program is one of the more humble experiences that I never had felt before.

Having workshops focused on 50+ people living with HIV is not just important, but it provides us with the opportunity to have our voices heard and to share our own personal experiences. Ending the epidemic without us is not possible and each one of us have our own rollercoaster of challenges.

Wow moments from USCA are so many but the hundreds of warm smiles, thousands of “Hi brother,” “hi sister,” and innumerable family hugs have to be the first “Wow moment” to be mentioned. Social media training needs to be mentioned also. What great tools for those who know how to deal with online challenges, definitely a challenge for those who are over 50+ and with little social media literacy! The plenary with Dr. Redfield’s mandate for disruptive innovation have to be mentioned, because it had empowered me to follow those leaders who protested to him and to the whole country with the power of their truth. Watching protesters doing what he asked for: “Disruptive innovation.” Protesting is not new in the HIV field, but those protesters are innovators. They have provided clear and precise information for CDC to star innovating, Arianna Lint giving data of and from transgender people was a disruptive innovation that worth to mention in my wow moments. Another memorable moment of my rollercoaster was during the special exhibition ball featuring Dominique Jackson, Mother Elektra from “Pose.” Category is: Ending the Epidemic with Inclusion!

 

Robert Pompa
USCA 2019 was “a smash hit,” “the bomb,”, “dope” or however you choose to describe an exceptional conference experience.    It is apparent the lengths which NMAC organizers go to ensure that PLHIV feel welcome and safe in addition to the attention to diversity,  inclusivity, and intersectionality.   I attended several of the breakout sessions that were part of the HIV 50+ program as well as several that met other needs for my role at my home agency.  I was blown away by the opportunity NMAC provided to offer a discussion with Laura Cheever!  Thank you, Moises, for giving me a chance at the mic to express my comments directly to Dr. Cheever.  Specifically, the importance for all policies and programs to be drafted and enacted through a Trauma Informed Care (TIC) lens and that anyone receiving funding to deliver services be trained in TIC.  Additionally, I stumbled upon the “Positively Fearless” mental health break out session and was in awe of the delivery style and topics of that session.  The gentleman who facilitated was exceptional (the panel too!). This session “nailed it” in regards to mental health concerns for what it means to live with HIV (at least many of the folks I serve in my BCS role as well as my own)!  Thank you again NMAC for the privilege and honor to be a member of the HIV 50+ Strong and Healthy Cohort and another wonderful conference. 

 

Art Jackson
My experience at USCA can be summed it with one word and that is “Enthusiasm.” I learned new ideas on addressing those of us aging with HIV by attending the various specific tracks that dealt with housing, HRSA,  and and the luncheon plenaries where we the audience got to engage in the slide before the track started was beyond awesome. USCA allows many of us to not only network and check in with each other but one of the most important aspects for me is the access to the latest and most up to date information when it comes to HIV/AIDS education, prevention, and care.  

NMAC has led the way in not only addressing but being very specific in the need to have programming addressing the ever growing population of people living with HIV. Whether it is those who are long term survivors, or newly diagnosed the data shows how this population is the largest and the fastest growing and looking at care and the many other issues that go along with that will be vital to us growing in a healthy, positive manner. We know that isolation, lack of housing, and the ability to live our lives in an independent manner will be vital to our future and development of programming, that addresses these issues is going to be signifcantly important to our long term survival.  

Looking at how we are working with agencies whether they are state, county, city or federal one thing we must do is make sure we are addressing specific and targeted programs and policies for people living with HIV/AIDS.  USCA gives us a platform, policies and practices we can use and implement that will allow our voices to be heard.

 

Alexa Rodriguez
My name is Alexa Rodriguez, I am Indigenous Salvadoran immigrant transgender woman. I am the director of a regional organization Trans-Latinx DMV. I have the privilege to be outside doing what I love, organizing and mobilizing community especially trans community. This year I was able to be part of the host committee and the scholars for HIV 50 Plus. I feel the love and the energies to continue contributing whit my community and with organizations like NMAC that does amazing work ENDING THE EPIDEMIC, and opening opportunity for all and especially trans women of color. one of many of my favorite part is when a trans woman of color is on stage talking on her experience next to academic scientists, because, like myself I might not a have a academic master degree, but I have a 21 years living with HIV and that make me an expert and gives me a doctoral degree in HIV. I hope to myself to be on stage on one of the coming conferences and speak from my heart and be visible to other like me and be he voice of many who doesn’t have a voice or not be heard  

Mi nombre es Alexa Rodríguez, soy mujer indígena transgénero inmigrante salvadoreña, soy directora de una organización regional Trans-Latinx DMV. Tengo el privilegio de estar afuera haciendo lo que amo, organizando y movilizando a la comunidad, especialmente a la comunidad trans. Este año pude ser parte del comité anfitrión y, como académicos del VIH 50 Plus, siento el amor y las energías para seguir contribuyendo. con mi comunidad y con organizaciones como NMAC que hacen un trabajo increíble FINALIZANDO LA EPIDEMIA y abriendo oportunidades para todas y especialmente las mujeres trans de color. Una de mis partes favoritas es cuando una mujer trans de color está en el escenario hablando sobre su experiencia junto a científicos académicos, porque; como yo, podría no tener una maestría académica, pero tengo 21 años viviendo con VIH y eso me convierte en un experto y me hace tener un doctorado en VIH, espero estar en el escenario de uno de los próximas conferencias y hablar desde mi corazón y ser visible para otros como yo y ser la voz de muchos que no tienen voz o no se les escucha.

 

Janice Shirley
Hey, my name is Janice Shirley and Iwould like to share my experience at the USCA by way of the 50+ Scholars Club.  I was able to attend all of the sessions that were suggested. The one I enjoyed most was when I was asked to be a Presenter of the micro-loan grant from Gilead which was on Community Education. I was a bit nervous because the other two presenters had power points and I just had my agenda for the months on the session that we meet on twice a month. Even with that I learned a lot about myself, like don’t sweat the small stuff and believe in my abilities and trust the process. I was also able to meet with  Paul and discuss with him about doing four sessions next year in San Juan, Puerto Rico. I’ve always loved coming to the USCA  because of the experience I get, the people I meet, and the things I’m able to learn and take back to my community.  

 

Miguel Delgado
Blessings.
I first wish to thank all the deceased brothers and sisters who fought and offered their lives for a response to address this epidemic and to those who continue this renewed activism today. They are my inspiration. The HIV 50+ Strong and Healthy Program of 2019 was one made with care and quality which addressed essential issues to develop a care strategy aimed at HIV positive people over 50 years of age. The topics presented were tackled from the holistic care of us, the people with whom HIV lives who, thanks to medical advances and the care of health providers, we have a long life. The development of my skills as a leader, seeing me as an activist, advocating for our rights, are some of the benefits of this conference. A lot of emotion during the presentations, a great sense of brotherhood and camaraderie among the participants, was among others my experience. The conversation with Paul Kawata was very emotional. Being part of the group of Puerto Ricans that received the pass to hold the next USCA 2020 conference in Puerto Rico, made me proud. Thanks to the people and institutions that made my participation possible. 

 

Porchia Dees
I received the 50+ plus scholarship to attend this year’s USCA Conference. I believe that I was one of the only 50+ scholars who were under 50 years old, and I was so honored to be able to be a voice for people who have been aging with HIV since birth. I am also very grateful for the opportunities that were provided to all of the 50+ scholars even after the conference. This year’s theme was ending the epidemic through their memory. 

I attended a few sessions from the HIV & Aging 50+ track that was created for us as well as a lot of other sessions that sparked my interest. I learned so much, and was able to network and make connections with so many different advocates and representatives from different organizations around the world. It was amazing to see all of people who turned out for the 2019 USCA conference.  

My favorite part about the conference was the plenary sessions.  The timeline of the HIV pandemic that was given to us in the first session left me feeling extremely blessed and grateful for how far we have come in the fight against HIV/AIDS. The speeches by Iyanla Vanzant and Linda Scruggs left me feeling extremely empowered as an African American woman who has been living with HIV for going on 33 years now to continue to keep doing the work that I am doing and pushing to make a difference until we get to an AIDS free generation.  

 

Reggie Dunbar
I attended the 2019 USCA in Washington DC September 5th-8th and was taken back to the beginning of AIDS, GRID, etc. Memory and memories are meaningful especially for those like me who were there in the beginning.
I appreciated showing the history from where we have come to where we are now to where we will be headed.
The workshops were stimulating. Having US Departments like HRSA, CDC, etc, the listening sessions, and people living with HIV in the same rooms was encouraging. Seeing and engaging community members and advocates from across the country was great.
 I am more than encouraged to continue the fight and mission for advocacy, education and information about HIV-AIDS.
Thanks for the experiences and I look forward to more and future engagements with NMAC.

Steven Vargas
This year’s USCA focused on efforts to finally End the HIV Epidemic. It made very clear that to finally end the epidemic levels of HIV, we will need more than the biomedical advances to do so. We must address racism and sexism and their attendant atrocities (homophobia, transphobia, xenophobia, poverty) and the havoc they bring (unemployment, hunger, homelessness, trauma). What HIV has taught us is no matter what pills are in the pipeline, if we do not address these challenges equitably, they will continue to persist. HIV will continue to persist. If we are serious about finally ending the damage HIV can cause, then we must do more than address the medical side of HIV, and focus on the social side.  Particularly important were the Listening Sessions scheduled with HRSA’s Laura Cheever and Antigone Dempsey. It provided an opportunity for us to alert our Federal funders of the need to be proactive with including those of us aging with HIV in the process of developing an end to the epidemic. Thanks to advancements in HIV prevention and medical treatment, many of us are gratefully aging with HIV. A relatively new trend, this aspect of living with HIV yields many uncertainties: how will HIV and aging interact, how do many years of taking medications as they were developed affect our aging process. We can learn and plan together for this eventuality so others may not experience the same uncertainties. Thank you, NMAC, for affording us this opportunity!

Where Have All the Funders Gone?

Where Have All the Funders Gone?

Next week (October 28 & 29) donors will come together for Funders Concerned About AIDS AIDS Philanthropy Summit. Here are the 2017 top 20 funders of HIV/AIDS (global and domestic).
Here are the top 10 funders of the US HIV/AIDS epidemic. Eighty percent of the domestic HIV funding comes from the pharmaceutical industry.
Top 10 States Receiving Funds

All of the above data comes from Funders Concerned About AIDS signature report,
Philanthropic Support to Address HIV/AIDS.
Our movement needs a significant influx of private sector funding and leadership if we are to end the HIV epidemic in America. Government support can only do so much and has significant limitations. Private industry, foundations, and donors need to support what the government cannot. This is a once in a generation opportunity to end an epidemic.

Ending the HIV epidemic in America requires culturally-responsive and sustained engagement in health care and adherence to meds for the majority of the 500,000 people living with HIV who have fallen out of care, are unaware of their HIV status, or have not achieved an undetectable viral load. Additionally, the federal plan to end the HIV epidemic in America has set a goal to get around 900,000 more people on PrEP. Does the existing HIV infrastructure have the capacity to serve 1.4 million more people? Is this kind of expansion possible without a significant increase in private sector support?

Where are the business champions? I do not naively believe that we can do it by ourselves. We cannot. Corporations, foundations, and major donors are needed now more than ever. Our movement needs private sector support and leadership. In the past, CEOs like Bob Haas from Levi Strauss would make the case for HIV to his peers. Where are the CEOs working with community to end the epidemic? Other than the pharmaceutical industry, they all seem to be gone. John Dempsey, it’s time to come back to help finish the job.

According to Funders Concerned About AIDS, “For the fourth year in a role, private HIV/AIDS philanthropy to the US has reached a new high, totaling $186 million in 2017, a 7% ($12 million) increase from 2016. This is mostly attributable to a 40% increase in domestic funding from Gilead Sciences.” In the near future, I will discuss the racial justice component to funding, but for now I just wanted to share the numbers.

Yours in the struggle,
Paul Kawata
30 Years of Service

Paul Kawata