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A Privileged Life

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I have a lot of privileges in my life.  I am an American who received a good education and a home in a safe neighborhood.  I shop online and don't think about where or how the items are made, I just want the lowest price.  I expect to be treated with respect and dignity and when that doesn't happen, I feel empowered to complain.  Initially, I didn't know these things were a privileges.  Most of my friends had the same opportunities and we never discussed or thought about the privileges granted to us.
I grew up believing that if I worked hard enough, I could accomplish anything.  America was a country where anything was possible.  I bought into the dream and seldom thought about how it was a privilege and not a right.  Secretly, I sometimes felt like the people who complained just didn't work hard enough.  I took everything for granted.  So what happened?

HIV turned my world upside down

HIV showed me that all the things I took for granted can be taken away.  Early in the epidemic, HIV didn't care if you were rich, powerful or well connected, the disease killed everyone.  Insurance was no guarantee of quality medical services.  My safe home became undesirable when somebody with HIV died in the bedroom.  Disease changed the way the world saw me and the way that I saw the world.  I was no longer a person, I was a vector for transmission of a virus. My "lifestyle" was equated with being a dirty, irresponsible, sex hungry, drug using addict.  For the first time, I was treated differently and it made me angry.  It is tough being a second class citizen in a first class world.  

As treatment became available, the balance changed again. We used to all be in the same boat, but now not so much. The Affordable Care Act, Ryan White Care Care and Medicaid expansion gave most people living with HIV access to care and medications, but the disease outcomes varied widely by race.  If its not about access, then why is race a determining factor for HIV infection and disease outcomes? 
How do I talk about the injustice of health outcomes and not be the "angry person of color?"  How can I suggest that race may be a factor without people feeling like I'm "playing the race card?"  How can I talk about privilege and not piss off the people I'm trying to reach?

In the abstract everyone wants to talk about race, but when it's about real life situations, it is amazing how defensive and angry it makes the world.  NMAC's mission leads with race to urgently fight for health equity and racial justice to end the HIV epidemic. I've tried to include race in my discussions with colleagues - I failed miserably.  That doesn't mean I am going to stop, my sense of entitlement tells me that it is my right to talk about race.  It is my right to talk about life's inequities.  But it is such a hard road and it is not fun being pigeonholed. 
I've been doing this work for a long time.  Many of you know me personally -  I'm not that guy who complains about how the world is unfair.  Yet that's how I feel when I bring up race.  I need your help to unpack this difficult conversation in a way that allows people to be heard and not stereotyped.  I need your support when I make mistakes. Talking about race is not easy.  Fighting HIV taught me about privilege and how quickly it can go away.  Hopefully now is the time to address race.  If we don't, we will never end the HIV epidemic in America.  

Yours in the struggle

Executive Director, Paul Kawata 
nmac logo

Rest in Peace Dr. Beny Primm

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Beny Primm was my friend and mentor.  He stood up and vouched for me more times than I care to remember.  In the early days, there were activists who felt that the Executive Director of the National Minority AIDS Council (today known as NMAC) should be Black or Latino.  Beny always said it wasn't about my race, it was about my commitment to fight for all people of color.  
You will hear about Beny's many accomplishments and accolades in other memorials, I want to share my memories of the man.  We spent too many hours at too many hotel bars telling stories about our movement, its leaders, and how we were going to get white people to listen to us.  In those early days, we learned how to laugh while surrounded by death. 
Like the epidemic itself, we came together as strange partners. Here was a Black doctor from Brooklyn who was a national leader on addiction befriending an Asian gay man from Seattle who got into this work because his friends were dying.  We did have one thing in common: our desire to fight for all people of color touched by HIV. 
Beny was a great storyteller.  He would regal us with antidotes on the war, being a Black physician at a time when there weren't many Black doctors, his family, and the Addiction Research and Treatment Corporation (ARTC).  He would always share with pride the success of his daughters - they were clearly the light of his life.
Friends and family will share stories about his important work at ARTC.  I want you to know he was and always will be NMAC's Chair Emeritus.  We spoke last month about how to get him to this year's United States Conference on AIDS.  His book had just been published and he wanted to share it with attendees.  Unfortunately, he got sick and had to cancel.  I didn't realize he was this sick. 
I thought Beny would live forever with his dapper suits, mustache, and smile.  He was my friend, sounding board, and advisor.  He had a good life, but for me the world became just a little dimmer.  

Yours in the struggle

Executive Director, Paul Kawata 
nmac logo

Thank You #2015USCA

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Thank you
#2015 USCA

Thank you for making #2015USCA a great meeting.  According to, #2015USCA was one of the top 100 "trending topics" on Twitter last week.  Continue to post your comments and pictures at #2015USCA or #NMAC.

Participants attending HIV Action Day
Participants attending HIV Action Day
Thank you sponsors and the DC host committee.  Special shout-out to Gilead as the Presenting Sponsor, Merck and Broadway Cares/Equity Fights AIDS for their HIV Action Day sponsorship and ViiV and the Magic Johnson Foundation for their support of the youth initiative.  

The feedback has been amazing.  USCA appreciates and values your years of support, your understanding when things don't go perfectly, and your willingness to go on this adventure with NMAC.  

      britnidanielle Last week was dope. I traveled to DC to attend the US Conf. On AIDS.
       I learned so much at #2015usca & met so many DOPE people I can hardly explain it all.
                    But now it's back to work. #HappyMonday everyone!
       thefabgiver I came, I hugged, I learned... #2015USCA, it has been real! See everyone next
       year. P.S. I love my newest @greaterthanaids t-shirt. I think this makes number six in my
       collection 💙 2d

      Nancy Pelosi ‏‪@NancyPelosi Sep 10 to be honored w/ the Elizabeth Taylor Legacy Award
       a symbol of our commitment to fighting AIDS! #2015usca

Please watch Mark King's love letter to USCA.  MTV also sent this great email, they were @ USCA shooting a documentary. 
       I am writing today to extend a heartfelt thank you on behalf of our producers at MTV and Viacom INC.
       We captured some great footage of Mr. Barton and Mr. Sharp at the conference.
       We interviewed several of their peers who are also participants of the youth program. I wanted to tell you 
       that each of them spoke very highly of you and all of them indicated that their participation in the program
       had changed their lives to some extent.
       The very fact that USCA and the youth program brought Kristopher and Kahlib together is a testament to the
       good work you all are dong. MTV and Viacom INC. look forward to having the opportunity to highlight that
       work in the documentary.

NMAC's new mission, vision and name are part of the agency's commitment to "lead with race" and to fight for racial justice and reduce health disparities.  They are part of the DNA of the agency and a key component of future meetings. 

The Numbers Dont Lie

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Numbers_Numbers Dont Lie.png

The infographic below shows the stark reality of HIV in Black America. The statistics are mind numbing. At current rates of infection, 50% of black gay men will have HIV by the time they are 35 (8% of white gay men are infected). I've been accused of caring more for the black community then I do for my own people. I love being Asian and I will always be concerned about my community, but the numbers don't lie. As an Asian gay man, I am fighting for black gay men because it's the right thing to do. I am fighting for black gay men because like the civil rights movement, it's going to take a rainbow of people fighting together to make a difference.

February 7 is National Black AIDS/HIV Awareness Day. We come together to once again draw attention to HIV's devastation of America's black community. How many more awareness days do we need in order to understand that we've failed black gay men? Nowhere in the world are there communities with a 50% infection rate. We have also failed African American women when they are 20 times more likely to be HIV infected then white women.
Numbers_Info graphic1.png

Numbers_infographic 2.png
In the fight against HIV over the last 30 plus years, the statistics for the black community were always known. The social determinants of health are often sited as the reason for the big difference. According to the CDC, "The social determinants of health are the circumstances in which people are born, grow up, live, work, and age, as well as the systems put in place to deal with illness. These circumstances are in turn shaped by a wider set of forces: economics, social policies, and politics." America has poor people of all ethnicities, so why aren't the rates of poverty equivalent by race? The color of your skin should not determine your health outcome, yet all the indicators reveal the opposite.

The HIV community cannot solve all the world's challenges, so what is our responsibility? A recent Lancet article notes, "33 percent of HIV-positive black MSM were retained in care, compared with 51 percent of white MSM; and only 16 percent of black MSM were virally suppressed, compared with 34 percent of white MSM. If black MSM achieved the same degree of HIV care as white MSM, the racial gap in new infection rates would be reduced by 27 percent. If black MSM with HIV had 95 percent diagnosis, or 95 percent retention in care, or both, the reduction would be 27 percent, 25 percent, and 59 percent, respectively."

In other words, if we're able to retain HIV positive African Americans in care, we can significantly move the curve. It's not enough to link people to care, all PLWH need to be retained in care.

NMAC challenges health departments and community based organizations to move quickly and aggressively to link/retain all PLWH into care. Since it's not enough just to link into care, we need implementation research to understand how to retain PLWH in care. AIDS United published an interesting study on the use of smartphone apps to support PLWH in care. A panel from the International Association of Physicians in AIDS Care has 5 recommendations on how to retain PLWH into care. NMAC thinks it may be time to look at incentive programs for either the PLWH or healthcare providers.

NMAC challenges the Centers for Disease Control, health departments, and community to re-examine the use of data. There is too much lag time between collecting the data and reporting on it. As a result, decisions are being made using data sets that can be 4 years old. How helpful is it to make decisions in 2015 based on data from 2010? This year the White House will release an update on the National HIV/AIDS Strategy, yet the data from the report may have been collected years earlier. It's very difficult to get a good picture of the epidemic if we don't have good data. NMAC asks health departments to create advisory committees made up of people living with HIV, activists, community based organizations, elected officials, healthcare providers, civil rights attorneys, researchers, and others to discuss the use of data. Policies that were put in place at the beginning of the epidemic may no longer be relevant. Making good decisions depends on good data. Data should be the foundation to determine how to spend limited HIV resources.

Viral suppression and when to begin treatment should be the PLWH's decision with support from their healthcare provider. Health literacy for all people living with HIV is essential in order for individuals to make informed decisions. NMAC calls for impactful, culturally intelligent health literacy programs to be made available to all PLWH. Differences in viral suppression based on race should be closely monitored with timely transparent reporting. Using viral load data, NMAC recommends that money and resources are prioritize for "hot spots", communities with a large numbers of PLWH who also have a high viral load. The money needs to follow the epidemic.

The color of your skin should not determine your risk for HIV infection, viral load, or mortality. On this National Black HIV/AIDS Awareness Day, let's commit to retaining everyone living with HIV into care.

Building Healthy CBOs

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This is a guest posted written by The National Minority AIDS Council, Director of Capacity Building Assistance Division, Kim M. Johnson, MD

For decades, NMAC has worked within communities of color, targeting community-based organizations, to build healthier communities.
Community-based organizations represent the backbone of the public health sector and play a vital role in eradicating HIV/AIDS. Today, community-based organizations (CBOs) are facing a rapidly changing health care landscape in which they must be able to adapt and change in order to be sustainable and viable. Now more than ever before, the principle of survival of the fittest is paramount.

The public health and health care systems are undergoing a paradigm shift fueled by the implementation of the Affordable Care Act, advancement of the National HIV/AIDS Strategy, medicalization of HIV services and biomedical advances. In this rapidly changing landscape, only healthy organizations will survive. Healthy organizations have "the capacity to learn and keep changing over time. They have the ability to align, execute, and renew themselves faster than their competitors can, that is, adapting to the present and shaping the future faster and better than the competition."

In order to improve the viability, sustainability and relevancy of CBOs in this dynamic environment, NMAC will provide capacity building assistance that works to build healthy organizations.

Healthy organizations have the following characteristics:
  • Organization alignment
  • Capacity for execution
  • Strategic partnerships
  • Capacity for change and renewal
  • Market-focused
  • Invest in people
  • High quality leadership teams

To that end, NMAC's capacity building assistance will work with CBOs to:

the infrastructure and culture within their organizations

strategic collaborations and partnerships

High Impact Prevention interventions and client-centered services

CBOs to effectively navigate and lead change

Aligning organization infrastructure and culture

Building on its landmark Organizational Effectiveness Series (OES ), a 15 volume set of organizational development manuals, NMAC will develop four new manuals focusing on Strategic Management, Organizational Change Management, Financial planning, and Resource Development and Marketing. Each manual will be in workbook format with web-based interactive components designed to enhance learning.

Creating strategic collaborations and partnerships

Given the changes buffeting the worlds of healthcare and CBOs, we are seeing more serious discussions of partnerships between CBOs and the healthcare sector than ever before. We're not referring here to short-term arrangements between a clinical provider and a social service nonprofit to collaboratively offer a program in response to a specially funded initiative, but rather to healthcare providers formally integrating networks of CBOs into their care delivery systems, and payers viewing CBOs as reimbursable providers of services that were previously the sole purview of clinicians. For partnerships between CBOs and healthcare providers or payers to be successful over the long term, both parties must be clear about their own interests, their assessment of what the other party brings to the table, and why working together is better than going it alone.

NMAC will host a series of consultations for CBOs and healthcare providers to discuss collaboration and partnership options and strategies. While the initial impetus for many of these discussions may be the big environmental shifts noted earlier, the best of the partnerships that ultimately form will be much less about a path to survival for the partnering organizations and more about a way for them to better serve their target beneficiaries. For healthcare providers, these partnerships offer an opportunity to actually improve the health of the individuals and families they serve rather than just treating them when sick, and to do so with a cost-effective approach. For CBOs, these partnerships may allow them to secure more sustainable sources of funding for their work and to scale up and serve far more persons than they might have previously imagined possible.

Executing High Impact Prevention programs and services

Many CBOS work with patient and peer navigators to engage PLWHA. In collaboration with the CDC, AIDS Project LA and the Denver Prevention Training Center, NMAC will host HIV/AIDS Navigation Services trainings. This training program aims to hone the knowledge and skills of navigators in HIV care, as well as provide them with the tools necessary to assist PLWHA in navigating the complexities of HIV care. The training program's format will be a combination of didactic sessions and interactive group exercises, including case studies to translate knowledge gained into courses of action driven by HIV AIDS navigation service protocols.

Equipping CBOs to navigate change

While facing the challenges of navigating the rapidly changing landscape, community-based organizations have a unique opportunity to establish a new niche for themselves by building upon their strengths and assets and learning how to successfully navigate change. Organizational change, however, is inseparable from individual change. NMAC's change management CBA program, focuses on building the capacity of CBO senior and mid-level executive leaders to lead change in their organizations and communities. The Building Leadership for Organizational Change and Sustainability program (BLOCS) and the Main Essentials for Mid-level Executives (MEMLE) program, build the capacity of CBO leaders to improve their change management skills and decision-making processes to effectively manage organizational change in a shifting healthcare environment. The programs offer in-person training, DiSC assessments, executive coaching and access to online change management resources.

Race Header_web.pngI grew up, literally and figuratively, in the HIV/AIDS movemevent.

The vast majority of people working to end the epidemic are good, honest, impartial  Americans who have committed their lives to
this fight.  They are not racist, they are progressive people who are trying to change the world.  That's why it's so perplexing, in a movement
committed to equality, why health outcomes are so different for gay men of color and African American women?

PK Email-02.pngIn 2015, the National Minority AIDS Council (NMAC) will talk, train and fight for racial justice. The ACLU defines racial justice as work that addresses issues that have a disproportionate and negative impact on people of color. Race Forward defines racial justice as the systematic fair treatment of people of all races, resulting in equitable opportunities and outcomes for all. At NMAC, we are going to look at racial justice through the lens of health equity. Our belief is that the color of your skin should not determine whether you are more or less at risk for HIV infection and that all people living with HIV deserve quality healthcare. NMAC will work to advance racial justice through advocacy, research and leadership development. Our measure of success will not be the number of people reached, it will be positive changes in HIV/AIDS health outcomes for all communities.

PK Email-03.pngHIV/AIDS most often occurs at the intersection of race, gender, gender identity, income, geography and sexual orientation. Among other things, addressing HIV/AIDS also requires frank discussions about about sex and drug use, at multiple levels including at the individual, family, community and societal levels. Addressing any of these issues is difficult, and to look at their interconnectivity seems nearly impossible. Even with the progressive politics of the HIV movement, black women are 20 times more likely to become HIV infected when compared to white women.  While alarmingly, some studies estimate that one in four Black men who have sex with men (MSM) will become HIV positive by the age of 25 and 60% by the age of 40.  What are we doing wrong?We don't want to be that angry organization that always brings the discussion back to race. We also don't want to be naive and never talk about race because its too divisive. Somewhere there has to be a middle ground. That is the space that NMAC is trying to reach, teach and empower.

Race MAtter image.pngThis month NMAC's 5 Divisions will share their 2015 vision and priorities, with an eye towards finding a middle ground on these issues and that maximizes broad and in-depth participation among stakeholders and constituents. This is not just for communities of color, but should be inclusive of all races. There is intrinsic value in diversity as an integral part of the discussion. In fact, it is essential that all people, regardless of race, be given the opportunity to contribute. NMAC's programs will address race directly, but we will also get to 'race' by addressing other challenges in the HIV/AIDS movement. For example, our treatment program will work to improve health literacy for all people living with HIV, but we will inevitably target communities of color more, given both the disproportionate impact of the epidemic coupled with disparities in educational attainment.

If we are committed to ending the HIV/AIDS epidemic, then we also need to commit to racial justice for all people living with HIV/AIDS. It's not possible to end the epidemic in just one community. We are too interconnected and interdependent.

Now it is up to us...

Yours in the struggle,



Paul Kawata

Executive Director



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