Posts of: NMAC

February 7, 2018 marks the 18th year for National Black HIV/AIDS Awareness Day (NBHAAD), a national HIV testing and treatment community mobilization initiative targeted at Blacks in the United States and the African Diaspora.^[1]  Founded in 1999 as a national response to the growing HIV and AIDS epidemic in Black communities, NBHAAD 2018 presents the opportunity for those who have held communities together, spoken truth to power, demanded higher quality services, and advocated for better access to treatment/prevention to help us achieve the end of the epidemic in our lifetime.

We are more than 30 years into the HIV/AIDS epidemic and the Black community remains under siege. Of the estimated 1.2 million people living with HIV/AIDS in the U.S., nearly half (498,400) are Black.^[2] While the U.S. remains 12 percent Black, our community accounts for 45 percent of new HIV diagnoses.^[3] Blacks also account for 44 percent of the HIV-related deaths.^[4] The burden of the HIV/AIDS epidemic continues to primarily be felt by Black cis women, Black transwomen, Black youth, and Black gay and bisexual men.

These numbers have been slow to change despite a new era where options for and access to prevention and treatment have never been better. Scientific breakthroughs have made it possible for us to now live in a world where maintaining an undetectable status can extend a person’s lifespan and makes it nearly impossible for one to transmit HIV to another person. Moreover, there is now a pill that when taken daily can prevent HV transmission. However, the Black community continues to lag behind in achieving viral suppression and using PrEP/PEP.

Each of us has the responsibility to show that it is the will of the people to change what it means to think about HIV in the black community. NBHAAD 2018 should be the moment where the black community changes our conversation about the disparities we see in HIV and articulates a real vision of health equity and justice. Our country should be a place where health outcomes are not based on race and place. Everyone can reach this grand destiny. The transformative power of our community can be unleashed to reimagine our health.  In this moment, we can recommit to an intersectional fight that seeks to end this epidemic by improving the health outcomes of our community. That means more access to insurances, increased use of medical care, more affordable housing, increased levels of  education, and more  employment with social mobility. The nature of the necessary changes challenge the way that systems and institutions think about and support one another. Moreover, the systems and institutions that claim to support our community must reorient how they think of our community. Systems and institutions must provide us with what we need to help everyone move forward.

The nation has been focused on the achievements of black women recently and, in the case of HIV, we would do well to follow their trail. It’s one that has seen the first significant decreases in new diagnoses of HIV for black women. It’s one that has seen record numbers of treatment services to be expanded to think of the holistic needs of an individual’s. It’s one that has some of the biggest congressional champions on the HIV front in the form of Congresswomen Lee and Waters. We need to drive similar outcomes and champions from all levels of our community that are touched by HIV. The black cis women have shown a possibility model. However the rest of our community must be equally tireless in our resolve to achieve similar levels of success. That commitment will lead all of us towards a path to the end of the epidemic. Yes, on this year’s NBHAAD we must continue the course and the promise of a future that millions have given their lives in services of. We are about to approach a point where we are closer to the end of the epidemic then we are at the beginning in many metrics, but the this has all been balanced on a delicate map. And in this moment we have to push together collectively to realize the promise that Black women have shown us is possible for our community. That, as always, is our collective strength that has helped us overcome and shaped reality that has made our community better.

On NBHAAD 2018, we must reflect, (re)commit and (re)think how we approach HIV prevention and treatment. May we celebrate how far we have come and look ahead with passion and hope towards the places that we still must go. We must ask new/different questions that facilitate the evolution of our understanding of this epidemic, such as:

How can we invite in the missing people from the conversation,

• How do we identify the missing markers, the lost gaps and missed opportunities that could change us?
• How do we meaningfully engage community members who have not felt or seen advances in prevention and/or treatment?

In these uncertain times, the answers to these questions will shape the way forward. Personally, lend your voice to the chorus that is calling for and creating change so together we can say:

• We promptly answered the call when it was time to end the epidemic in our community
• We found a way to continue to uplift our community and accelerate the end to this epidemic
• YES, the reality of prevention and care was truly be realized in our lifetime

The world is waiting to see if we can work together to make ending the epidemic a full reality. Stand with NMAC to build a bridge to our liberation.

Matthew Rose
Policy and Advocacy Manager
NMAC

^[1] https://nationalblackaidsday.org/about-us-2/

^[2] https://www.cdc.gov/hiv/group/racialethnic/africanamericans/index.html

^[3] https://www.cdc.gov/hiv/group/racialethnic/africanamericans/index.html

^[4] https://www.cdc.gov/hiv/group/racialethnic/africanamericans/index.html

We create coded language to explain why people of color must work smarter, stronger, and be more organized than their white counterparts. Racism is baked into the mainstream’s beliefs about people with different skin colors.  It is unfair, but very real. White is seen as competent, while everyone else must prove their worth. This is the lesson that parents of color teach their children, also known as “driving while black.” To protect our children, early on we share life’s ugly reality that the world isn’t fair. Your skin color can get you killed.

As a national “minority” organization, NMAC pays this tax on a daily basis. It’s part of why we push so hard. NMAC gets to comment on the unfair nature of the world because we are viewed as competent and reliable. We are viewed this way because we work harder, faster, and cheaper than our counterparts.

People may roll their eyes and see my writings as just another person of color whining about the world. The world is tough for many, while NMAC seems to be successful.  While I agree the world is tough for lots of people, people of color have to fight to prove our worth, while our white counterparts are assumed valuable until proven otherwise.

That nuance is central to why NMAC leads with race. In a movement that wants to end the HIV epidemic, we must come to terms with the impact that skin color has on health outcomes. Part of why NMAC works so hard to make USCA and the Summit stand out is to imagine a world where the color of your skin doesn’t matter. To prove that we are just as good.

In this Black History Month, NMAC is committed to our work to make that world a reality everywhere, not just within our space. And we hope you’ll help us get there.

Yours in the Struggle,

Paul Kawata
Executive Director
NMAC

*No government funding will be used for the Leadership Institute

These are confusing political times. New issues pop up every week. It’s difficult to separate our emotions from what’s good for the movement. Sometimes it doesn’t seem real. After a year of living in the new Washington, and at the request of Cynthia Carey-Grant from WORLD, NMAC is bringing back its Leadership Institute on Wednesday, September 5th, the day prior to the start of USCA. This year’s meeting will focus on How to Survive During Difficult Political Times. The Institute is for Executive Directors and HIV and STD Directors. Registration information will be posted online in March so please mark your calendar now. Our movement needs to talk, build mutual strategies and continues its important work to end the epidemic.

It might get worse before it gets better. 2018 may force some difficult discussions. I don’t know the answers. What happens if to pay for tax reform with significant cuts to discretionary nonmilitary funding? What happens if they cut entitlement programs? Medicaid is the largest payer of care for People Living with HIV. When you overlay the midterm elections, it is impossible to know which way this will go.

It could become easy to pick us apart when fighting for crumbs. People are rightfully very concerned. Now more than ever our movement needs leaders who can both fight and collaborate. Unfortunately, these qualities are not usually found in the same person. The Institute is a place to learn both how to have difficult conversations. Our leadership may be tested in ways that hasn’t happened since the early days of the epidemic. Money has a way of changing the discussions. Hopefully this will not come to pass.

NMAC invites new and long-term leaders to plan the Institute. Interested folks should drop an email at pkawata@nmac.org. All the work will happen via email and conference calls. You will need to cover your own travel and hotel to the Institute. This is a short-term project that will end in September 2018.

DEFCON
Like the DEFCON system, NMAC is considering coding our language so the field understands our level of concern. When everything is important, nothing becomes important. Most of the times we share the information because we want to inform the field. We are looking at a coding system so communications, e-newsletters, webinars, conferences, and printed materials set the right tone. We need to balance reality and not paralyze the field.

Phase 1: Thought You Should Know
Phase 2: Slightly Concerned
Phase 3: This May Be A Problem
Phase 4: This Is A Problem
Phase 5: DEFCON 1

“Collaborate and Fight” needs to be our movement’s mantra. We have to work with the Trump Administration to insure necessary services for people living with HIV continue. But what do you do when nobody is listening? This year’s Leadership Institute is looking for leaders who understand the collaboration is ideal, but we will fight if necessary. Let’s hope it’s not necessary.

Yours in the struggle,

Paul Kawata
Executive Director

The Capacity Building division at NMAC provides capacity building services to community based organizations (CBOs) and CBO leaders. The CBA program is called Linking and Integrating Networks for Collaboration (LINC).

LINC provides community-based organizations with assistance to strengthen and sustain organizational infrastructures that support high impact HIV prevention services. This is accomplished by providing free training, technical assistance, and resources for activities related to:

• Prevention with HIV Positive Persons
• Prevention with High-risk HIV Negative Persons
• Organizational Development and Management

Capacity building enables nonprofit organizations and their leaders to develop competencies and skills that can make them more effective and sustainable, thus increasing the potential for them to enrich lives and address society’s most intractable problems. In addition to capacity building topics focused on organizational development and management, NMAC also has provides training and technical assistance services focused on the development and implemenation of HIV and PrEP Navigation services.

Recently, NMAC collaborated with the National Library of Medicine (NLM) to launch a new initiative, The New ERAdication of HIV: Youth Navigation Program (YNP). This initiative focuses on youth serving community-based organizations and addressing ways to eradicate HIV in youth populations. NMAC and NLM will collaborate to develop and tailor HIV information, resources, and tools for youth navigators. The resources will then assist Youth Navigators with engaging clients and disseminating accurate and reliable HIV information and resources. The YPN program aims to reduce incidence of HIV in youth ages 13-24 by disseminating information developed to inform testing and the implementation of strategies to improve HIV testing and entry into prevention services. NMAC and NLM will also work together to establish a YNP advisory board to support the efforts of this initiative.

NMAC is continuing its existing collaboration with NLM for the Linking Communities to Care through HIV and PrEP navigation initiative. The goal of Linking Communities to Care through HIV and PrEP navigation is to improve recruitment, linkage, and retention to care and health outcomes for people of color living with HIV or at high-risk for HIV. Through this program, NMAC trains HIV and PrEP navigators to play a greater role in reducing and eliminating barriers to the timely prevention, diagnosis, and treatment of HIV in their own communities. NMAC offers capacity-building services through training, technical assistance and information sharing. This summer, the Linking Communities to Care through HIV and PrEP navigation program will be launching online trainings for HIV and PrEP navigators. Look for more information on these upcoming trainings.

For information on how to access our CBA services or for information on upcoming trainings please email the CB division at LINC@nmac.org, or visit our page. We look forward to working with you.

Nation’s Leading HIV & STD Organizations Oppose
Formation of New “Conscience and Religious Freedom Division” at HHS

2018 Vision

2017 was a difficult political year. Unfortunately, 2018 looks to be equally challenging. President Trump requires that we up our game. There are real lives and real money on the line. Our movement’s long-term success or failure will be greatly shaped by what happens over the next three years. 2018 is particularly important because of the midterm elections, implementation of the tax reform, getting rid of the individual mandate for health insurance, and Congress looking to cut $1.5 trillion in federal spending to pay for the tax cuts. They are seriously considering cuts to Medicare and Medicaid.

NMAC’s 2018 Vision centers on four priorities. These priorities require significant collaboration (internal and external). NMAC remains committed to lead with race to end HIV/AIDS. Biomedical HIV prevention is our greatest hope for building pathways to end the epidemic.

2018 Priorities
Constituent Advisory Panels
Trauma Informed Care
2018 Midterm Election
FY19 Budget

The four priorities address concerns from constituents about not being heard, provide a model that might explain why people are color are not retained in healthcare, and make a priority of NMAC’s collaborative efforts to fight for the federal domestic HIV portfolio.

2018 will be a real test of partnerships. NMAC will rely on our colleagues like never before and, hopefully, they can also rely on us. We must show up ready to fight and collaborate. Our ability to bring together diverse coalitions will be our major contribution. Last year taught us that we are stronger together. In this messy political world, NMAC must never cower. Even in the most difficult of situations, we must speak truth to power, lead with race, and continue to believe that we can end the epidemic. 

2018 Political Environment Scan
2017 was a wild ride.  As a country, we jumped from one challenge to another. While most were not directly about HIV, the challenges were definitely HIV adjacent and gave pause. 2018 won’t be different. 

The good news is that whenever HIV hit the press, many communities stood in defense. When the Washington Post published its story on banned words, many others came to the defense of free speech. The same is also true when the administration disbanded PACHA. Our field is deep and strong and has many allies. Unlike during other administrations, our community is not going to sit back and take it. People will stand with our movement, mostly. 

In order to cover the $1.5 trillion deficit caused by the tax cut, some Members of Congress want to cut programs that directly and indirectly impact the lives of people living with HIV. Not only is HIV funding at risk, but healthcare in general is at a tipping point. The bill to cut taxes also got rid of the individual health insurance mandate, which will destabilize health insurance markets in many states. Will the marketplaces survive when premiums significantly increased because healthy people are no longer required to get insurance? 

2018 Priorities
Constituent Advisory Panels (CAP)
NMAC needs to respond to concerns raised by constituents during USCA and the Summit. Constituent Advisory Panels or CAPs are a 2018 priority. While most of the anger was not about us, it is important for the agency to seriously address their concerns. NMAC will hire a new position in Conferences to oversee CAP. However, addressing NMAC’s issues with constituents will not end the frustration and anger that our people feel. Life in Trump’s America is very difficult for people who are different.

CAPs are still a fluid concept and Conferences will lead NMAC’s efforts to identify final solutions. NMAC is committed to creating real solutions to set up CAPs that really support the agency to do better and to give our constituents the respect and love they deserve. 

Trauma Informed Care (TIC)
Why are people of color retained in care at lower rates than their white counterparts? Studies show this is the major reason why we have poor health outcomes, not access. Rather than just point out this inequity, NMAC seeks solutions from the concept of trauma informed care (TIC), particularly when the trauma is connected to racism, sexism, transphobia, xenophobia, homophobia, or HIV-phobia. There is significant post-traumatic stress from the early days of the epidemic. While the virus does not cause isolation and depression, too many people over 50 living with HIV suffer with these and other challenges.

It’s time to bring HIV-related depression out of the closet. Folks do not have to suffer.  There is help and medications that can make it better. That’s why TIC is so interesting. Trauma informed care is an organizational structure and treatment framework that involves understanding, recognizing, and responding to the effects of all types of trauma. TIC also emphasizes physical, psychological, and emotional safety for both consumers and providers and helps survivors rebuild a sense of control and empowerment. The trauma experienced by many members of our community cannot be underestimated. TIC may not be the ultimate solution for what faces people of color living with HIV, but it’s important to have options that start to address this inequity.

2018 Midterm Elections
The results of the midterm elections could impact the next generation of our work. Since HIV care = HIV prevention, our ability to end HIV depends on our ability to implement a comprehensive biomedical HIV prevention strategy. Ending HIV also needs money.  Only the federal government has the resources needed. NMAC must work with either party, but there is a huge difference in strategy when Republicans vs. Democrats are in power. 

As a nonprofit, NMAC cannot tell our constituents who to vote for, but we can work to get out the vote. Can a small organization like NMAC do anything to make a difference in the midterm elections? The sensible answer is “no.” But can we live with doing nothing?

FY19 Budget
Once again, we find ourselves in a battle to save the domestic HIV portfolio. As was said in the past, this really is a real critical year. The House wants to balance the budget by cutting everything but defense.  They need to cut $1.5 trillion in federal spending to pay for the tax cuts.  Certain members have suggested cutting entitlements. Cuts in Medicaid or Medicare will have profound impact. This is especially true for PLWH who get their health insurance via expanded Medicaid. 

The federal budget is not usually cut in election years; however, these are not ordinary times. We need to be ready for a fight. Last year NMAC started its “Golden Ticket” editorial and social media campaign. NMAC will continue this work and once again use the August recess to target members.

This 2018 Vision requires lots of hard work and collaboration (internally and externally). Our constituents demand that we work together to shape and fight for a world without HIV. This vision is how NMAC can survive and fight back during these difficult political times. 

Yours in the Struggle,

Paul Kawata
Executive Director
NMAC

Paul Kawata recently wrote that he is willing to live with the “trade-off” of increasing STDs if it means we can end the HIV epidemic. I thank Paul for publicly raising what so many have raised in private – but I think this is the wrong framing of the issue. I argue that we cannot end HIV without acknowledging an inconvenient truth: the HIV and STD epidemics are inextricably linked and without combatting both, we won’t end HIV.

Here are the facts. Reported cases of chlamydia, gonorrhea, and syphilis are at historic levels. Neuro and ocular syphilis are on the rise. Hepatitis A transmission is increasing among gay men. Rates of congenital syphilis are high and growing. And gonorrhea is on the verge of becoming untreatable. These are infections that have real health consequences, make people more vulnerable to HIV infection, and ultimately imperil the progress we have made against HIV.

The rise in STDs cuts across community lines. If you are having sex, regardless of your race, gender, and sexual orientation, you are now at an increased risk of acquiring an STD. Regarding STDs as eminently treatable but inconsequential—as some in our community do—guarantees that women, young people, communities of color, and many others who lack access to basic health care and sexual health services will not get an equal opportunity to live the healthiest life possible.

Women, too often ignored in the fight against HIV, bear an unequal burden of negative health outcomes from STDs. Pelvic inflammatory disease, infertility, and cervical cancer are just a few of the life-threatening outcomes. Congenital syphilis, once trending toward eradication, has roared back to the highest rates in decades with dire outcomes. Roughly seven times more babies are born today with congenital syphilis than with HIV. Forty percent of babies born to women with untreated syphilis may be stillborn, or die from the infection as a newborn.  We should not — and need not — accept such a trade-off.

Paul writes that “not everyone wants or likes to use condoms,” and I agree; however, condoms are still one of the best ways to prevent STDs, HIV, and unintended pregnancy, and de-emphasizing their use has real consequences. A key lesson to be learned from the HIV epidemic is that we must be proactive and prepare for what new sexually transmitted infection may be around the corner. Let’s not pit biomedical interventions against condoms. Rather, let’s give our communities complete and honest information about both and provide the tools people deserve to fight HIV and other STDs, including PrEP, PEP, treatment, consistent testing, and condoms, so that people can make the choices that are right for them.

Biomedical advances have given us an unprecedented opportunity to end the HIV epidemic. To meet the full promise of PrEP, we must work hand-in-hand to address the intertwined HIV and STD epidemics. The same forces that drive HIV drive other STDs and fuel the same health disparities. There are real health and human costs to a sole focus on HIV and not a broader sexual health framework, one that includes STDs and sex positive approaches to informed decision making.

Thank you, Paul, for helping to raise the visibility of this important discussion. I urge our field to continue these conversations and work together to combat all sexually transmitted diseases, including HIV – lives depend on it.

__________________________

David Harvey is the executive director of the National Coalition of STD Directors. We represent state health department STD programs and community-based partners across 50 states, seven large cities, and eight US territories.

Please mark your calendar for the 2018 United States Conference on AIDS to be held September 6-9 in Orlando, Florida. NMAC initially moved USCA to Orlando to support a city that was devastated by the massacre at Pulse Nightclub. It was a tragic and unthinkable loss of life and, like the HIV epidemic, it left behind a community that was both broken and committed to rebuilding. Two years later, what are the lessons the HIV community can learn from this adversity? How do we honor this unspeakable loss while the rest of the world moves on to other issues?

This year USCA and NMAC will focus on Trauma Informed Care (TIC) as a roadmap to healing. Trauma informed care is an organizational structure and treatment framework that involves understanding, recognizing and responding to the effects of all types of trauma. TIC also emphasizes physical, psychological, and emotional safety for both consumers and providers and helps survivors rebuild a sense of control and empowerment. The trauma of violence, HIV, racism, homophobia, sexism, transphobia, and xenophobia cannot be underestimated in how they inform people’s willingness to get healthcare. As we all know, retention in healthcare is essential for people living with HIV. It is also necessary for people on PrEP. NMAC believes this is one of the primary reasons why people of color have such different health outcomes when compared to their white counterparts.

While overall last year’s USCA was amazing (please see final report), there were moments where NMAC was called out to be more responsive to communities that are over-represented by HIV, yet under-represented at the conference. As a result, NMAC is putting together Constituent Advisory Panels (CAP) to help inform USCA, the Summit, and other NMAC programs. A full announcement of this program will happen in February.

This year we are also adding Webinars to improve your USCA experience. NMAC will host three webinars on the following topics:

• Abstract Submission (April)
• Scholarship Submission (June)
• New Attendee Orientation (Aug)

These webinars along with an enhanced web site will guide participants through the process of submitting abstracts or scholarships. It will also orient new attendees because USCA can be overwhelming to people who have not previously participated.

This year USCA will have three rounds of Scholarships:

• Youth Scholars (April)
• People Over 50 Living with HIV (May)
• General Scholarships (July)

In our effort to be more transparent, look for future announcements about these initiatives. Members of the CAP will be asked to review applications.

Finally, USCA is bringing back the Executive Director’s Leadership Institute. It will be all day on September 5 in Orlando. This year’s Institute will be limited to 75 people. More details will be released in March. It will be an intensive learning experience on trauma informed care and how it can shape HIV services.

Welcome back, it’s going to be a busy year.

Yours in the Struggle,

Paul Kawata
Executive Director
(202) 277-2777

Under the leadership of Moises Agosto-Rosario, Treatment Director, and the additional members of NMAC’s Treatment Division team (Matthew Rose, Policy and Advocacy Manager; Fernando De Hoyos, Treatment Coordinator; and Sable Nelson, Policy Analyst) achieved these successes in 2017:

• Creation of the HIV/STD Partnership of five HIV/STD organizations to strengthen our efforts to influence federal HIV policy.
• Helping to Prevent the full repeal of the Affordable Care Act
• Helping to prevent cuts to HIV/STD federal funding through January 19, 2018
• Organizing HIV/STD Action Day prior to the United States Conference on AIDS (USCA) on September 6, 2017
• Recruiting speakers and presenters for the Biomedical HIV Prevention Summit in New Orleans from December 4-5, 2017
• The creation of the HIV 50+ Mini-Grant Program for empowerment & community building

We could not have completed any of our work without your support. We sincerely appreciate the input and participation of our community! In 2018, the Treatment Division looks to build upon these successes by engaging in the following activities:

Here is a preview of some of the exciting activities of the Treatment Division for 2018:

• Opening applications for the HIV 50+ Strong & Healthy 2018 USCA Scholarship (application available March 2, 2018 / application due date: June 1, 2018)
• The Treatment Division will release a best practices guide for biomedical HIV prevention at USCA 2018 in Orlando, FL.
• In the next few weeks, the Treatment Division will release Part II of the Blueprint for HIV Biomedical Prevention in collaboration with the O’Neill Institute for National and Global Health Law at the Georgetown University Law Center.
• Our 50+ Strong and Healthy Program will host monthly webinars for long-term survivors.

For more information on NMAC’s Treatment Division, please visit our page.