ESCALATE 101

Addressing HIV Stigma in the HIV Workplace: Training, Technical Assistance & Learning Collaboratives

Ending the HIV epidemic in America starts with addressing HIV stigma in the HIV workplace. NMAC believes the best way to create real change is by building partnerships between people living with HIV (PLHIV) and their Ryan White HIV/AIDS Program (RWHAP) service providers. Thanks to funding from HRSA-HAB, NMAC put together this new stigma reduction program with three different learning modalities: 1) trainings, 2) technical assistance, and 3) learning collaboratives in a program called ESCALATE (Ending Stigma through Collaboration and Lifting all to Empowerment). Click here to find out how to register. Participants can only register if they are part of a team that includes a PLWH and their RWHAP service provider.

NMAC believes the best way to reduce structural HIV stigma is through honest dialogues that are followed with updated policies and procedures that focus on HIV stigma reduction in the workplace. We are looking for real solutions that are client centered. NMAC wants to provide a neutral safe space to have these difficult discussions.

This work will not be easy. HIV stigma sits at the intersection of race, gender, gender identity, and sexual orientation. Because it’s NMAC, we’re going to prioritize race and its impact on HIV services. Yes, we are going there. The solutions are not cookie cutter. We understand the need to tailor policies and procedures. Our efforts will address HIV stigma in the RWHAP workplace. It will not reduce HIV stigma in the larger world.

Trainings are the entry level learning modality. They are for RWHAP funded agencies and PLHIV that are starting to work on stigma reduction. The trainings will bring together teams (providers and clients) to provide an overview of HIV stigma. By the end of the training, teams will develop their first steps to reduce stigma in the workplace. Technical Assistance (TA) is for RWHAP providers who are looking for one-on-one assistance. TA will be specific to the agency seeking assistance and will look at the implementation of tailor-made stigma reducing activities. Learning Collaboratives (LC) are for the advanced RWHAP provider teams (to include PLHIV) who want to be a part of an ongoing group that will implement tests of change using an improvement framework and share their experiences with the other teams. LCs will focus on cultural humility and its role in HIV stigma reduction. We provide different modalities because organizations are in different places among the HIV stigma spectrum, and we want to meet you where you are at.

This HIV stigma reduction initiative is centered on NMAC’s work to end the HIV epidemic in America. There are too many PLWH who have fallen out of HIV care. We believe that providers need to address HIV stigma in partnership with PLHIV. The TA will be provided by Abt Associates, and the LCs will be coordinated by NORC. NMAC will be the lead for the trainings. These learning modalities will start this summer virtually with in-person work slated for 2022. Our stigma reduction efforts are part of a four-year cooperative agreement with HRSA-HAB using the Minority HIV/AIDS Fund. For more information, please email ESCALATE@nmac.org.

Yours in the struggle,

Paul Kawata
NMAC

Paul Kawata
ESCALATE is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) and the Minority HIV/AIDS Fund as part of a financial assistance award totaling $1,600,906.100 percentage funded by HRSA/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA/HHS, or the U.S. Government.

Dear Harold

NMAC logoJune 8, 2021

Mr. Harold Phillips
The White House
Washington, DC  20500

Dear Harold,

Congratulations on your well-deserved selection as the next Director of the White House Office of National AIDS Policy. Please thank the President and Dr. Rice for including community in this important decision. You have NMAC’s support, and we look forward to working with the administration to end the HIV epidemic.

Your life is about to change. As a Black Gay Man leading our nation’s efforts to end the HIV epidemic, you stand on the shoulders of Reggie Williams, Calu Lester, Alvin Ailey, Tim Offutt, Craig Harris, Max Robinson, Ron Simmons, Willli Smith, Sylvester, and many other Black Gay heroes we lost to HIV. While most people know you from your work at HRSA-HAB, I get to brag that you got your start at NMAC.

With your new appointment, community needs you to deliver. There are too many people living with HIV who have fallen out of care. There are too many people who need PrEP, but we can’t seem to reach them. While the solution to ending the HIV epidemic might be biomedical, it is not simple. That’s the problem with the previous administration’s strategy. They believed you just needed to make medications available. The reality is so much more complex and nuanced.

COVID has pressed pause on everyone’s work but, as America reopens, it’s time to get back to planning to end HIV. While we appreciate the President’s commitment for more HIV funds, we also need to make sure the funding goes to where it is most needed. I believe the Biden-Harris administration is looking for ways to bring racial equity to government. HIV sits at the intersection of that search. What does it mean to bring racial equity to our fight to end the HIV epidemic in America? How will HHS, HUD, CDC, HRSA, SAMHSA, CMS, NIH, OAR, NIAID, and other federal agencies be required to carry out this White House mandate?

With your new appointment, community needs you to fight. While we are very happy that you got this job, it only works if you fight for us. As a member of the White House’s Domestic Policy Council, we need you to bring the fight to end HIV to them. Too many people think the epidemic is over. Your voice represents more than you, it is the voice of the multitude of communities fighting HIV.

It is time to reconstitute the President’s Advisory Council on HIV/AIDS (PACHA), and it needs to be real. Your office needs the support of a Council that embraces the White House’s commitment to racial equity across government, a Council that understands it’s here to support you and the President to end the HIV epidemic.

The HIV community is extremely diverse and you can’t please everyone. There will be times when community may disagree with the administration. Please do not take critiques personally. As your job is to stand-up for the President, our job is to stand for community. I believe there will be lots of agreement, as the White House has shown their commitment to healing America.

As you prioritize tasks, we look forward to the Biden-Harris plan to end the HIV epidemic. There is no need for a completely new process; however, the previous plan did not directly address race and its impact on ending the epidemic. As I know you understand, addressing the racial divide in HIV is core to ending the epidemic. For too long we’ve danced around race and racism and focused on things like the social determinates of health. The color of your skin should never be a factor in your health outcomes, yet for too many diseases this is true. HIV can be the example for how to use race to address too many health disparities in America.

As you know, the population of people living with HIV is aging. While this is wonderful, it was not something fully anticipated when the original Ryan White program was envisioned. Now we need to make sure the HIV service mix includes specialty care like gerontology. While PLWH are living longer, they also face multiple challenges from aging and HIV. The Biden-Harris administration needs to create and implement a comprehensive “standard of HIV care” for this growing community.

The White House needs to tell the Centers for Disease Control and Prevention (CDC) to stop classifying people with transgender experience with gay men in their HIV epidemiology profiles. Justice for the transgender community starts by having CDC understand the difference between gender identity vs. sexual orientation. Too many administrations have promised to make this change, yet nothing ever happens. Ideally, we hope Assistant Secretary for Health Dr. Rachael Levine leads this charge.

The Biden-Harris plan should take a systemic approach to ending infectious diseases in America. It’s not enough to focus on HIV. Now is the time to also address Sexually Transmitted Diseases (STDs) and Hepatitis. You can end three more epidemics that have challenged America for too long. Our solutions should focus on the whole community and not any one disease. As COVID has shown us, there is a great need for comprehensive health infrastructures in too many communities in America. The plan to end HIV should serve as the foundation for bringing healthcare to communities that are too often overlooked. As we used the HIV vaccine infrastructure to test the efficacy of COVID vaccines, now we can use the HIV prevention and care infrastructure to bring long term health to communities in need.

Harold, I am so proud of what you accomplished. Now is the time to take those years of experience working at NMAC and HRSA-HAB to build the plan that you know is needed to end the epidemics. NMAC stands in solidarity with you and the administration. We will see you at the Opening Plenary for the 2021 United States Conference on HIV/AIDS, so please bring your boss.
Yours in the struggle,

Paul Kawata
NMAC
Paul Kawata's Signature

 

 

 

HIV Long Term Survivors Front and Center

By Moisés Agosto-Rosario, NMAC Director of Treatment

NMAC celebrates and honors HIV Long-Term HIV Long Term Survivors (HLTS) by raising awareness of their needs, issues, and journeys. For those who lived through the early days of the HIV epidemic, AIDS at 40 years is the future we never imagined. Our lives were full of uncertainties and fear. We were afraid of the possibility of being the next one to get sick and die. We took care of our friends and served our community fearlessly. We created HIV services by responding to our HIV+ brothers and sisters’ needs; we organized and mobilized by forming coalitions like the People with AIDS Coalition (PWAC), Body Positive (BP), and the AIDS Coalition to Unleash the Power (ACT UP). We created national organizations in Washington DC to advocate with us. Organizations like the National Association of People with AIDS (NAPWA), the National Minority AIDS Council (NMAC), the American Foundation For AIDS Research (AmfAR), and the AIDS Action Council and Foundation (today known as AIDS United) developed an HIV policy plan. They lobbied Congress and the federal government for funding and better provision of services.

We shook government institutions through direct action, demonstrating against the government silence and inaction, pushing them to do the right thing. We became scientists and, with knowledge, demanded drugs into bodies and had a tangible impact on the development of HIV medicines. We created principles to empower ourselves and assert our right to “be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations” and “not to be labeled as “victims,” a term which implies defeat.” I can go on and list the challenges and successes of the HIV community through the past 40 years with long-term survivors front and center. We are the reason we have treatment that has impacted our lifespan, allowing us to live longer and healthy lives. Long-term survivors should always be the foundation and the guiding principle for anyone in the HIV movement advocating or providing services.

Those of us aging with HIV and over 50 (HIV50+) are now the community’s elders. The HIV professional field and political movement were created by us and for us. Sadly, today it seems that we have been forgotten, and many of the elder HIV long-term survivors that once were warriors today are alone and in isolation. Our first HIV warriors are the long-term survivors we honor today and the first group of HIV+ people aging and over the age of 50. HLTS need science and research to understand the biology and medical treatment of aging with HIV, and health care that addresses  multi-morbidities and develops standards of care and provision of services appropriate for this aging community. Today is a day to honor and reflect on what has been and will continue to be the role and contribution of the HIV 50+/HLTS. It is a day to renew our commitment to people living with HIV/AIDS (PLWHA), learn and implement the Denver Principles; it is a day to recognize and facilitate and empower PLWHA to be at the decision-making tables, as it should be. Long-term survivors are the guiding principle and light to illuminate the path and the action we take to end the HIV epidemic.

40 Years of HIV

Thousands of people march past the White House during a candlelight vigil in support of funding for AIDS/HIV research Washington, DC, May, 1993.

This week there will be lots of stories about the 40th Anniversary of the first reported cases of a disease that would later be known as AIDS. Back then, this milestone was unthinkable. All we wanted to do was get through the next week without someone dying. To mark this important anniversary, NMAC invited four longtime activists to talk about the impact that report had on their lives. Over the month of June, we will release those conversations in our social media and via our weekly newsletters.

While people aren’t dying from HIV in the same numbers and new cases have dropped by 9% from 2015 to 2019, there are still widespread disparities. African Americans are eight times more likely to get HIV when compared to White America. Latinx are four times more likely. NMAC is still fighting for all the communities hardest hit by HIV. We are still committed to addressing the racial disparities that has plagued HIV for too long. Does the Harvard Law Review hold the key for including race as a component of HIV funding? A May 31st article in the New York Times noted:

“The Harvard Law Review, for instance, selects 30 of its 48 editors based on some combination of a writing competition and grades. Another 18 editors, a statement on its website says, are “selected through a holistic but anonymous review” that may consider “racial or ethnic identity, disability status, gender identity, sexual orientation, and socioeconomic status.”

The question of whether this diversity produces a better result was answered by a study that looked at 13,000 research articles. It found the “median citations of the Harvard Law Review increased by 23% in the five years after the adoption of diversity programs.” According to the authors of the study, this is statistically significant.

Can the same rules be applied to federal HIV funds? While most of the awards are given out on a competitive basis, there is a certain number of awards that are holistically and anonymously reviewed that may consider racial or ethnic identity, disability status, gender identity, sexual orientation, or socioeconomic status.

There is a racial reckoning coming to America after the death of George Floyd and protests from Black Lives Matter. Critical race theory is at the center of the culture wars and neither side will give up without a fight. The fight for racial justice is a fight for the soul of America. Who do we want to be as a country?

I believe the Biden-Harris administration is looking for strategies to fight racism by prioritizing racial equity across government programs. They understand there is a problem, but like most of us get lost trying to figure out solutions. Taken as a whole, the problem is overwhelming. How do you end racism in America? And it doesn’t stop at racism. Justice for people of color can lead to equity for the transgender community, women’s community, and LGBTQ community. That is why the Harvard Law Review is such an interesting example.

It’s hard to believe that the world has now been living with HIV for four decades. Time has moved much too quickly, and I am now an old man. I just want to live long enough to be here for the end of HIV and to see America on the right side of the fight for  justice and equity.

Yours in the struggle,
Paul Kawata

Paul Kawata

NMAC Stands With Billy Porter

Following is a statement from NMAC Executive Director Paul Kawata on “Pose” star Billy Porter’s disclosure of his HIV status.

“NMAC applauds Billy Porter on his disclosure of his HIV status. At NMAC, we know how much stigma around HIV cripples our ability to end the epidemic. It’s what keeps people from talking with their partners about HIV. It’s what keeps people from protecting themselves because they don’t feel worthy. It’s what keeps people away from doctors, clinics, and testing sites. And it perpetuates feelings of shame and deepens depression and poor self-esteem. As an award-winning actor, the lead of a hit TV show, and a gay man of color, Billy Porter’s disclosure can have a big impact on HIV stigma, particularly in communities of color where it remains a major obstacle.

“We are so happy that this disclosure is bringing him a sense of relief and release of pain and trauma. Billy is an amazing actor, singer, dancer, and now role model for people of color living with or affected by HIV. We look forward to having him as a partner in the fight against HIV.”

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

I Made A Mistake

I made a mistake in last week’s piece on the Minority AIDS Initiative (MAI). I believe good leadership is owning your mistakes and working to fix it. As you probably know, I am not an epidemiologist. However, NMAC will always follow the data and the science and the data I shared last week did not capture the impact that MAI has by race/ethnicity. Here is the corrected data that I received:

These data (from two CDC reports: Estimated HIV Incidence and Prevalence in the United States) show the disparity between African Americans and Latinx persons compared to White persons. While there is a slight decrease for African Americans and a slight increase among Latinx persons, the trend is essentially flat between 2010 and 2018.

Thank you to Eve Mokotoff, the Director of HIV Counts, for correcting the record.

There were also concerns about the amount of credit I took for NMAC’s role in the development of the MAI. To be clear and fair there were many leaders and organizations involved in the creation of the MAI. While NMAC played an important role, we were not the only ones. I did not mean to dishonor any person or institution.

I’ve been in Washington fighting HIV since the Reagan administration. I’ve made a lot of mistakes and will probably make more. Fighting HIV is a high wire act that is not for the faint of heart. Leaders who worry about making mistakes usually don’t take any risks. For NMAC, it’s not the mistake but the way it gets cleaned up or covered-up.

NMAC is focused on the Minority AIDS Initiative because we believe the Biden—Harris administration is committed to doing something important on race. After Black Lives Matter, there is a racial reckoning coming to America. It is not enough to point out racism. We are at a moment when the White House and Health and Human Services are looking for solutions. But we can only win by telling the truth and cleaning up mistakes
Yours in the struggle,
Paul KawataPaul Kawata

BLOC En Español Comes to Texas

NMAC proudly announces the Building Leaders of Color (BLOC) en español virtual training program for Texas this June 21- 25, 2021 (10am-3PM CST). The main goal of BLOC en español is to increase the meaningful participation of Persons of Color with HIV (PWH) who are prepared to engage in leadership roles and activities related to HIV service delivery in their communities. The training will be facilitated in Spanish.

BLOC en español is designed in Spanish language to provide language justice and cultural humility to the Latinx community. The program also utilizes NMAC’s new learning management system (the HIV-E virtual platform) and a tutorial prior will be provided. BLOC en español’s learning objectives include:

  • Leadership development for community engagement including defining traits and characteristics of leaders
  • Developing a community lens on the forms of stigmas including enacted and layered stigma
  • What are and how to use health numeracy, measurement tools, and patient support tools for planning
  • Developing skills to effectively be engaged in surveillance, evaluation, calculations, data analysis, and performance measurements as a community leader
  • Increase knowledge of the Ryan White HIV/AIDS Program and other planning bodies for involvement
  • Elaborate leadership opportunities considering self-care
  • Develop individualized action goals and goal statements for seeking leadership opportunities

After completing the program participants are encouraged to engage in the planning process with a local community group serving persons living with HIV such as, Ryan White HIV/AIDS Program planning bodies. The program is available for all (PLH) who reside in Houston, Texas whose primary language is Spanish. The Ryan White HIV/AIDS Program recipients are highly encouraged to apply. The program will recruit up to 30 participants.

Apply by Sunday, June 20th, 2021, using the following link: https://www.surveymonkey.com/r/HTX2021

For more information contact: Cora Trelles Cartagena (She/Ella), HIV Systems Coordinator at ccartagena@nmac.org or 202-870-0481. Please visit us at nmac.org, Twitter/Facebook: @NMACCommunity and Instagram: @nmachiv.

This Building Leaders of Color (BLOC) en español is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $550,000 with 100% percentage funded by HRSA/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA/HHS, or the U.S. Government.

Who Benefits from Minority AIDS Initiative (MAI) Funding?

In 1998 African Americans surpassed White people as the population with the largest number of new cases of HIV.  After the data was released, 30 Black leaders met with the Centers for Disease Control and Prevention (CDC) to demand action.  The effort was led by Dr. Beny Primm, then board chair of NMAC.  He had NMAC’s Director of Government Relations, Miguelina Maldonado, work with the Congressional Black Caucus, the Congressional Hispanic Caucus, and the Congressional A/PI Caucus to create the Minority AIDS Initiative (MAI).  The goal for the MAI was to build the infrastructure of minority-led community-based nonprofits to minimize the racial divide in HIV health outcomes for African Americans and all people of color.
After 20 years of MAI funding, which communities benefited the most?
From 1998 to 2018, African Americans with HIV went from 39 percent of the cases in 1998 to 41 percent of the cases in 2018.  White people went from 40 percent of the cases in 1998 to 29 percent of the cases in 2018.  The Latinx community went from 19.5 percent of the cases to 23 percent in 2018.  Asians went from 0.78 percent to 1.5 percent of the cases.  American Indians/Alaska Natives stayed level at 0.3 percent.  After 20 years of MAI and other funding, only the White community saw a significant decrease in HIV cases.

That outcome speaks directly to the question the Biden/Harris administration is trying to unpack with the Executive Order looking at racial equity across all government programs: to not just look at how race impacts access and funding, but also how to make the system fair.  They are seeking community input on how to make this happen.

Per an email from the White House:

“Through the Office of Management and Budget, the Biden-Harris administration is soliciting input from stakeholders in the public, private, advocacy, not-for-profit, and philanthropic sectors, including State, local, Tribal, and territorial areas.  This request for information (RFI) seeks answers to dozens of questions critical to the administration’s efforts to advance equity, including how agencies can address known burdens or barriers to accessing benefits programs in their assessments of benefits delivery, and what practices agencies should put in place to reach rural areas and communities that might not be able to visit Washington, D.C., to engage directly with policymakers.

“A link to the RFI can be found at: https://www.federalregister.gov/documents/2021/05/05/2021-09109/methods-and-leading-practices-for-advancing-equity-and-support-for-underserved-communities-through

“Responses are due: Tuesday, July 6, 2021”

I believe the White House understands the system is unfair.  The challenge is how to fix it. NMAC hopes you will respond to this RFI and write about your solutions. As we get ready to prepare our response, I will share our journey.  This question is core to NMAC’s mission.  How do we change the structural racism that is baked into the federal government?
Yours in the struggle,
Paul Kawata
NMACPaul Kawata