Constituent Spotlight: Joe Gray

This is such an overwhelming feeling and such an honor to get to serve my Tribe, the HIV Community.  I am a young man from very humble beginnings and this is my truth. I have gone from being a hopeless Addict to an HIV Activist. April 10th 2015, Youth AIDS Day, is the day I got clean and moved into a 90 day homeless shelter for persons living with HIV here in Sacramento. I have done a lot of work on myself over the years so I could be where I am and I strive daily to be the person I needed when I was that young kinder-queer and newly diagnosed person living with HIV. I have gotten the opportunities to do some amazing and beautiful things after getting clean, such as being asked to represent Sacramento as a young gay man living with HIV at AIDSWATCH 2016 in Washington, DC where I advocated for HIV and AIDS funding in our country’s capital. I felt so overwhelmed, and in those moments, I learned about the power of my own story.

I cannot contain nor express in words the gratitude for the NMAC Youth Initiative Program, which has created a space for us young leaders to develop our personal leadership abilities though meaningful discussions and engaging in first-hand training from leaders in the HIV field. I became involved with the NMAC Youth Initiative Program based on a suggestion from a provider here at the clinic in Sacramento where I receive care. While at USCA 2016, I participated in various leadership trainings, dynamic discussions and, because of the training from NMAC, I have gained a confidence I never knew I had within myself. I have learned how to network and connect with other young leaders within the HIV field. I have been able to discover my leadership qualities and personal style. Soon after returning home from the program, I was a guest on POZIAM Radio speaking about my journey from Addict to Activist.

Later In 2017 I was asked to return as a Youth mentor. I made myself openly available to support, uplift, and encourage the youth scholars throughout the duration of our program and with their World AIDS Day projects and assisted with any questions they may have had.  While at USCA 2017, I felt it was important to build interpersonal relationships and deep connections with the other youth. I was able to help create space for them to engage in dynamic discussions about exploring the challenges we face as young leaders and creating networking opportunities, and shared community-based solutions. As we discover and collaborate on new ideas, we uplift and inspire each other’s community based work while redefining youth leadership as we wish to see it. We get to be the change we want to see in the world today.

While attending the Youth Initiative Program, we are given the space to cultivate the skills, abilities, and knowledge to formulate community-based efforts within the HIV community. Currently, I am putting all of what I have learned from Linda Scruggs, her team, and previous years with the Youth Program to work as the Lead on the planning committee for the One Love conference taking place at UC Berkley this year. One Love is a conference designed by young adults for young adults, ages 18-26, all of whom are living with HIV or AIDS. Participants will be engaged in complex discussions and workshop sessions about the unique issues they face with their diagnosis.

It is my hope that my experience will engage other young people living with HIV to know that there is life after diagnosis. We can dream and reach those dreams. We can have goals and achieve those goals. We can love and be loved. Most of all HIV has taught me how to love myself.

Important Happenings in HIV Policy

Important Happenings in
HIV/Health Policy

Week Ending: March 30, 2018
By: Matthew Rose & Sable K. Nelson

 

President Signed the FY18 Budget

On Friday, March 22, 2018, the President signed the bill that set the FY18 funding levels through September 30, 2018.  Flat-funding means maintaining the funding level from the previous fiscal year (FY17). Here’s a summary of what we currently know regarding how it impacts HIV/AIDS funding:

2017 Actual

2018 Estimated

Centers for Disease Control & Prevention (CDC) HIV, Hep, STD, TB line (Total) $1.117 M $1.127 M
Health Resources Services Administration (HRSA) Ryan White HIV/AIDS Program (Total) $2.319 M $2.319 M
Housing and Urban Development  (HUD) Housing Opportunities for People with (HOPWA-Total) $356 M $375 M


BOTTOMLINE:

  • The HIV portfolio of treatment and prevention programs were mostly flat-funded in FY18. We were able to see increases in the STD line to restore it to 2016 funding levels. There was also a 5 million increase in the funding for viral hepatitis. Furthermore there was a build increase of 19 million dollars to the HOPWA program. This is a WIN for the HIV community in this political climate (especially, since the Administration and the House of Representative proposed to cut and/or eliminate federal funding for certain HIV prevention and treatment programs in FY 2018).

 

OMB is reviewing a rule about the public charge

According to a draft of the proposal obtained by The Washington Post, the administration is seeking to further restrict immigration by changing the reach of the rules around “public charge.” It would change what can be used in a determination that would broaden range of factors when considering immigrants or their U.S.-citizen children are using public benefits or may be likely to do so. The proposed rule would force families, including citizen children, to choose between getting the help they need – like the Earned Income Tax Credit, ACA subsidy, CHIP and “WIC” nutrition assistance for babies and moms, medical care, and housing assistance – and reuniting with those they love or even keeping their families together. If adopted, this rule will make families choose between staying together and getting the health care they need, even for the family members who are US citizens.

READ → https://www.washingtonpost.com/world/national-security/trump-proposal-would-penalize-immigrants-who-use-tax-credits-and-other-benefits/2018/03/28/4c6392e0-2924-11e8-bc72-077aa4dab9ef_story.html?utm_term=.cf3dcd1cfc6a

 

 

New Director at the CDC

On Monday, March 26, 2018, Dr. Robert Redfield Jr. began his tenure as the new director of the Centers for Disease Control and
Prevention (CDC) in Atlanta. It is reported that while addressing senior CDC staff, Dr. Redfield stated that the AIDS epidemic could be ended within seven years and he pledged to bring the opioid crisis “to its knees.” Dr.Redfield has a complex history with the HIV community. He rose to prominence in the 1980s as a top researcher into the emerging AIDS epidemic and was most recently a medical school professor at the University of Maryland. However, Dr. Redfield has also been scrutinized for overstating the effectiveness of an experimental AIDS vaccine over two decades ago. NMAC and other organizations are cautiously optimistic to work the new director.

READ → https://www.upi.com/Health_News/2018/03/30/New-CDC-director-aims-to-end-AIDS-epidemic-in-seven-years/2591522426399/ ; https://www.cbsnews.com/news/aids-researcher-robert-r-redford-selected-as-cdc-director/

 

What NMAC is Doing About It

  • NMAC remains vigilant in its advocacy to protect FY19 government funding.
  • NMAC is has been meeting with legislators to work on FY 2019 funding levels
  • NMAC is preparing to for the release of the run around public charge and will be submitting comments
  • NMAC is planning a face-to-face meeting with the CDC Director in the near future

 

What You Can Do

TAKE ACTION: Many of you participated in AIDS Watch 2018 last week. Over 500 people from across the country travelled to Washington, DC to speak truth to power on Capitol Hill and share their personal stories with congressional staffers. It is vitally important to continue those efforts at the state level and speaking to your federal elected officials when they are at home. If we don’t support and advocate for HIV funding and programs, who will?  Our movement cannot afford to stand on the sidelines.  Your U.S. Senators and U.S. Representatives need to hear from you.

 

Also, MAKE SURE THAT YOU ARE REGISTERED TO VOTE in time for the primary and general elections happening this year:

Indiana

4/9/2018

Ohio 4/9/2018
North Carolina 4/13/2018
Pennsylvania 4/16/2018
West Virginia 4/17/2018
Idaho 4/20/2018
Arkansas 4/23/2018
Georgia 4/23/2018
Kentucky 4/23/2018
Oregon 4/24/2018
Nebraska 4/30/2018

For more information, VISIT→ https://www.eac.gov/voters/register-and-vote-in-your-state/

Finally, PARTICIPATE IN THE PRIMARY ELECTION(S) in your state!

NMAC’s Newest Voice – How Marissa Miller Makes Change

After a 10-hour drive and saying farewell to my beloved Midwest, I have found myself in Washington, DC. A year ago, this wasn’t my plan, but I have learned to listen to the universe and she told me to step into a new tomorrow. After all, for nearly 28 years I have spoken out as a voice in the Transgender communities, specifically Communities of Color, in Indianapolis, Chicago, and other spaces .

Being HIV-positive, Transgender, and Black has qualified me to have a voice. I believed, whether I understood it or not, from the very beginning that there was a very distinct need for my voice, and I was ready to use it.  A voice is a source of strength that can move others to make change…A VOICE so powerful…A VOICE so transparent…A VOICE so necessary…A VOICE not belonging to just me, but belonging to my people! As an advocate, I have often been mistakenly branded as angry. Yes, it was ANGER that fueled that initial Voice, but today PASSION and LOVE for my community is what now carries this voice.

I am thankful to the universe that my journey from anger to passion and love have positioned me as the first Transgender person on NMAC’s staff.  And not just a Transgender person, but a Transgender Woman of Color. Like with the first of anything, many eyes in both the HIV and transgender community will be paying attention.

Again, my focus at NMAC is not on me, the Transgender Woman of Color living with HIV. I came to NMAC to be a change agent and to work with other leaders as Program Coordinator in the Division of Leadership Pipeline. I am coming to support trailblazing opportunities for our community. I am coming to create additional collaborative partnerships in the fight to end HIV.

And I am coming to help NMAC fulfill its mission.

NMAC Connection Update

Would you consider applying to be part of NMAC’s Community Advisory Panels? This is a way too long recruitment letter to talk about our grand experiment. Applications are due March 23. This post explains NMAC’s vision and strategy to end the HIV epidemic.

 


NMAC leads with race to end the HIV epidemic in America
.

We do it by urgently fighting for health equity and racial justice via our continued commitment to build leaders of color, our focused role within the HIV community on race, and its impact on HIV care and prevention, and by our survival when so many other agencies have closed their doors. In 1987 we started with a commitment to building leaders of color with the skills, connections, and savvy to fight. Today, NMAC continues to build leaders and ask them to focus on race and its impacts on HIV care, treatment, and prevention. NMAC does not do anti-racism work. There are many organizations with more experience and qualifications. To be effective, anti-racism work has to focus on white people. NMAC builds the skills and tells the stories of people of color.

 

In 2014-15, NMAC’s updated strategic plan changed our name, mission, and vision. During this time, America also saw the rise of the Occupy Wall Street, Black Lives Matter, and MeToo movements. Like these causes, NMAC fights for a world that is fair and equitable; however, our fight is focused/limited to ending the HIV epidemic in America. We are not here to end racism. We are here to examine how race impacts HIV care, treatment and prevention. The majority of Americans living with HIV are people of color, yet 74 percent of the people on PrEP are white. This inequity is why NMAC fights for comprehensive biomedical HIV prevention for all communities highly impacted by HIV.

To help in your deliberative process, here is how NMAC’s divisions lead with race. We have five programmatic divisions: Leadership Pipeline, Communications, Treatment, Capacity Building, and Conferences. In our work to lead with race, I thought it would be important for you to have all the information. CAPs is a real program that will make real requests of your time. Your input will influence the workshops, plenaries, and scholarship decisions for both USCA and the Summit. Here is more information on the program.

 

Leadership Pipeline

The Leadership Pipeline leads with race through its BLOC (Building Leaders of Color Living with HIV) initiative. This work builds the leadership skills of people of color living with HIV. These trainings focus on how race impacts living with the virus. The goal is to build strong leaders of color living with HIV who can take on expanded roles in our movement. NMAC works with these leaders to examine how racism, homophobia, sexism, transphobia, and HIV-phobia impacts their lives and their leadership. Partners include the Positive Women’s Network, Thrive SS, Transgender Law Centerand the US PLHIV Caucus

The Pipeline also has a multiyear Youth Initiative. While the program is not exclusively for youth of color, it works to insure the full participation of minority youth. Additionally, the program educates about race and its impact on HIV. The Youth Initiative is supported by ViiV Healthcare, Advocates for Youth, and the Magic Johnson Foundation. There are many ways to lead with race. Our work does not have to be race specific in order to accomplish our mission.

 

Communications

The communication department leads with race via its Community Spotlight webinars and e-newsletters. This new, focused effort tells the stores of NMAC’s African American, Asian/Pacific Islander, Latinx, and Native American constituents. Using their historic awareness months as a guide, NMAC has set February to focus on African Americans, May on Asian/Pacific Islanders, October on Latinx, and November on Native Americans.

NMAC’s Community Spotlight holds webinars and sends out e-newsletters that tells the stories of people of color leaders who might be forgotten or overlooked. NMAC commits to presenting the diversity of our movement with stories from women, gay men, the transgender community, people living with HIV, people on PrEP, and geographic regions that are highly impacted by HIV. Our goal is to inspire, educate, and memorialize the movement of people of color leaders fighting to end HIV. All of our stories deserve to be told.

In addition to the focus on communities of color, the Community Spotlight also sets aside March to talk about women, April for Youth, and June for the LGBT community.  Storytelling plays an important role in minority communities, it’s how we share our history and pass down our values. NMAC’s Community Spotlight is a modern take on story telling: to educate, inspire, and memorialize the HIV history of people of color using technology. 

 

Treatment

The Treatment division highlights the role that race plays in HIV treatment, care, and prevention. NMAC is very concerned that people of color are under represented on PrEP and over represented in new cases of HIV. This division connects, examines, and discusses linkages between race and HIV services via Strong Communities, PrEP Summit & programming, and our initiative for People over 50 living with HIV.

 

Strong CommunitiesStrong Communities is a deeper dive into six southern cities to document how race impacts access to HIV services. NMAC documents the barriers facing people of color living with HIV to get the HIV services they need. This fall, Treatment will produce a best practice guide for community organizations that examines racial equity in services for PLWH.

 

While the Biomedical HIV Prevention Summit is not specific to communities of color, NMAC ensures that the voices of our constituents are part of the larger biomedical HIV prevention discussion. We lead with race by highlighting the challenges that people of color face to access PrEP and by raising concerns about the low retention rates of people of color living with HIV in healthcare. This year we will expand the discussion to include Trauma Informed Care. NMAC believes the trauma of racism directly impacts people of color’s willingness to access PrEP or stay in healthcare and on meds. This April, NMAC will have a PrEP Learning Collaborative on access and retention on PrEP within communities of color. Information gathered and vetted at the Collaborative will be the foundation of a best practices manual on community implemented PrEP enrollment programs for people of color slated to be released at the Summit. 

 

HIV 50NMAC’s Over 50 Living with HIV is not minority specific, but NMAC insures the voices of people of color are well represented.  Isolation and depression are unfortunately too common for too many. Some minority communities hold on to old fashioned beliefs about depression that leads to this disease being under diagnosed with years of needless pain because treatment was delayed.  People of color make-up the majority of people over 50 living with HIV. Building this community’s leadership will create networks of leaders of color who will be asked to help inform NMAC’s programming and be real examples of how to overcome the challenges of getting older with HIV. Through NMAC’s limited mini grant program, they’ve already putting together retreats, social events, support groups, and other efforts to reach their peers. NMAC believes when these leaders heal their community they heal themselves.

 

PolicyEducation logoHIV Policy

HIV policy work is housed in NMAC’s Treatment division. Most of NMAC’s efforts happen in partnership with AIDS United, NASTAD, NCSD, and The AIDS Institute. In this coalition, NMAC brings the voice of people of color to the table. Our primary focus is the federal domestic HIV portfolio. For NMAC, the partnership is about working collaboratively to address mutual concerns. After the 2016 election, the agency was very concerned about the future. In this political environment, we are stronger together.

NMAC also works closely with Federal AIDS Policy Partnership (FAPP). Established in 2002, FAPP is a national coalition of local, regional, and national organizations advocating for progressive federal HIV/AIDS legislation and policy. FAPP members are organizations that devote significant resources in support of federal HIV/AIDS public policy advocacy.

New this year is NMAC’s informal Congressional Briefings. In February we held one that spotlighted the African American community. In March it will be Native Americans. May will spotlight Asian/Pacific Islanders and October the Latinx community.  NMAC leads with race by bringing the stories of our constituents to Congress. Each briefing features the diversity of leaders including people living with HIV, executive directors of minority AIDS organizations, women (cis & trans), and gay men.

 

Capacity Building

NMAC is a Centers for Disease Control capacity building provider for community-based organizations. We provide services to a variety of CBOs, most of whom are not minority, but have a large minority clientele and/or staff. Recently, Capacity Building started to do limited work on how race impacts the work place. This work focuses on non-minority mangers work with people of color staff.

This division also has a PrEP program that focuses on youth. In the near future, the agency will need to address how communities and services get shared and divided between programs. Right now, I’m following the “throw a thousand seeds and see what sprouts” theory. Rather than be concerned about overlap, I want to see what programs survive in this challenging funding environment. While NMAC does support new initiatives with its limited unrestricted funds, long term support is needed to make any effort viable


Conferences

The United States Conference on AIDS is NMAC’s most visible program. While not specific for people of color, most attendees understand and expect NMAC to put race front and center when producing workshops and plenaries. These meetings are produced by people of color who lead with race. We are not an afterthought at USCA and the Summit.

In 2018 USCA will bring back the Race Institutes that will be developed by our new Constituent Advisory Panels (CAPs). CAPs are also NMAC’s newest programming to lead with race. By reading abstracts, reviewing plenary concepts, and making scholarship decisions, NMAC extends its commitment to building leaders while also learning from these individuals.

There are many ways to lead with race. NMAC believes that building the skills of leaders of color, standing up within the HIV movement, and surviving the difficult years is how NMAC leads with race to end the HIV epidemic in America. Will you join our grand experiment?  Online applications are due March 23 to be on NMAC’s new Community Advisory Panels (CAP). Hopefully, this long message will help you better understand our vision and mission to end HIV in America.

NMAC Connection: Recognizing Native HIV Awareness Day

National Native HIV Awareness Day is March 20
From time to time, we will feature voices from outside NMAC to talk about their communities and their work. This week, in honor of National Native HIV Awareness Day, we’re proud to spotlight Shana Christensen, a member of the Kiowa tribe in Oklahoma and a long-term HIV survivor and advocate.

There is a saying in Lakota that I really love: “Mitákuye Oyás’iŋ.” It means “All my Relations.” I’m not Lakota. We don’t have that saying in Kiowa, which is the tribe I hail from. Nevertheless, It’s always struck a chord with me. When I think about all the other Natives who are living with HIV, they feel like my family, even if I haven’t met them yet. Native Americans represent some two percent of the US population, yet in many areas of the country, our HIV rates as a race are super high, above whites and in some places, second highest.
> Read more from Shana                                                                                  Photo by Jeremy Charles                                                                                                                                                    

Want to Submit an Abstract for USCA? Join our Re-Scheduled Webinar March 20
As some of you know, we had some technical difficulties with our March 7 webinar on submitting an abstract for USCA. We’ve worked to iron those problems out and have re-scheduled the webinar for Tuesday, March 20, at 3:00 PM EST. Join us and find out more about this process. And, once again, our apologies for the difficulties to all of those who joined us on March 7.
Register now!


Join Us for “Women and HIV in the South” Webinar March 21

Register now for the latest webinar in our Community Spotlight Series on March 21 at 3:00 PM EST. Gina Brown, Community Organizer for the Southern AIDS Coalition, will join us to talk about Women and HIV in the South.
Register now!


One Week Left to Join NMAC’s Constituent Advisory Panels

Next Friday, March 23, is the deadline to apply to join NMAC’s Constituent Advisory Panels (CAPs). CAPs will advise NMAC on workshops, institutes, plenaries, and scholarship decisions for the 2018 USCA and Summit.
For more information and to apply for CAP membership, visit our website.

National Native HIV Awareness Day is March 20

By Shana Christensen

There is a saying in Lakota that I really love: “Mitákuye Oyás’iŋ.” It means “All my Relations.” I’m not Lakota. We don’t have that saying in Kiowa, which is the tribe I hail from. Nevertheless, It’s always struck a chord with me. When I think about all the other Natives who are living with HIV, they feel like my family, even if I haven’t met them yet. Native Americans represent some two percent of the US population, yet in many areas of the country, our HIV rates as a race are super high, above whites and in some places, second highest. Scary is an understatement.

Photo by Jeremy Charles

Our people have a milieu of reasons as to why we are at risk. Some tribes do an excellent job addressing prevention education. Other tribes have incredible access to care and treatment. I’ve been lucky to have visited lots of reservations over the years to look at their efforts first hand. I’m an urban Native, so I have quality access to care and excellent insurance through my husband and I’ve always been proactive in seeking out the best doctors and care. (If I did not have my husbands’ insurance, I live in an area that luckily works very hard to ensure my access to care with other funds, like the Ryan White Program, a life saver for many.) On the other end of the spectrum, there are tribes that have little to no HIV prevention, no money for HIV care, and no resources to help those in their communities who are HIV-positive. Numbers always affect funding, so smaller tribes are sometimes left by the wayside.

More of my life has been spent living with HIV as opposed to without it. As an adult, it is nearly all I know. I can’t imagine what an HIV free life would look like. Yet alas, this is my path and my journey, so I have buckled down to embrace it and make the best of it. It hasn’t been easy. It’s been incredibly humbling. There are no days off with this illness, much like the relief people feel when a Flu finally goes away. It requires daily attention and diligence. In the early years I was angry and felt betrayed by the whole world, sure that I had been accidentally wronged somehow and undeserved of this punishment. I had also been taught all the common ignorant stigmas about this disease, like many, about what this disease was and who “should” be most at risk for contracting it and thus never saw how I fit the pattern. So I learned the hard way, as they say. Again, humbling to my core. That was a sure fire way to deterioration and loss of energy and life. In those early years, I could feel it, literally.

Then things changed. I can without a doubt say that my traditional ceremonies are what have kept me alive and well. I’ll also agree that both Native American medicine and western medicines are an excellent mix, and are both what have contributed to keeping me alive and well. I have been privileged to have been able to participate in certain traditional ceremonies. Not all of us have access to our tribal ways. Especially for those of us who are Urban Indians, it is often difficult or very complicated to get home. For me, they were utterly life changing. They were the beauty I needed. They were the lessons in acceptance, patience, and gratitude I also needed. Yes, gratitude. It’s funny to think of being grateful to a disease that has the potential to kill you. Yet what I learned was a perspective so unusual and far removed from the traditional western outlook on a disease. It was the opposite in many ways. Most people would hate their disease, or resent it at the minimum. Diseases are annoying and time consuming and expensive and a literal pain, right? I was taught the antithesis. I learned to listen to my virus. I learned to communicate with it, to it. I learned to respect it as a life form. I also said things like I will need it to leave my body one day. But I learned how to not hate it, not resent it and not hate having it stream through my body. I also had to learn to listen to my body. And I learned that my body listens and responds to what I am saying, thinking and feeling about it. If you say you hate your body, your body hears it. If you say your body deserves to be well and healthy, it hears that too. We are not disconnected from our bodies.

In my tribe, they said that diseases come as a speaker on behalf of our Earth mother. This time, they said, she was poignantly saying that she was rapidly losing her immune system. She said her defenses have been harmed and her ability to heal has been impeded. The Elders said we humans have done this to her. They said we humans need to feel what she has felt in order to understand. And so the disease was gifted to the human race. It’s a far from average viewpoint. But it evoked in me a compassion and connection to this earth mother from where we all come from and must live. We cannot escape the need for oxygen from her air, or the need for food that grows from her soils or water that comes from her reservoirs. We need our homely earth planet and she does not need us. And so in the ceremonies I was taught to be humble, understand my connectedness to the mother earth and this living thing inside me.

The shift to healing is a deeply emotional and conscious one. It also takes daily work to remember that. Healing is different from a cure. It requires love. It requires a release of resentments and expectations. We humans have come far in this technological age and we have advances and achievements still to come. Yet we must not skip the fact that our waste cannot be greater than our consumption and ability to give back. We must return back to center, find a balance and give back in a positive way. All of these factors helped me. All of these helped me embrace my little retrovirus and carry it as a life form in my body. “Sleep and stop making copies,” the western medications say. “Do not invade the t-cells I need.” It remains burrowed in my RNA, now not replicating and not doing much of anything. Yet I am always aware it is there and listening. I swallow $3,500 worth of western antiviral meds each month. And I mediate daily on keeping the peace with it. Back to the Lakota expression, “Mitákuye Oyás’iŋ,” all my relations indeed, even the small viral ones.

So while I cannot speak for all natives across the country living with HIV, I can clearly state that our traditional ceremonial ways have an empowering piece to play if we allow it. Now, some native friends of mine have experienced the complete opposite of me, shunned from their communities, viewed as a sinned Leper of sorts, unworthy and outcast. It pains me deeply. I see them as my brothers and sisters, bound by our disease, our struggles, and our triumphs. And without trying to sound hippie dippy cliché, we are all truly related anyway. There is after all only one human race. It is my hope and outward encouragement to all of you that we can and will work towards and HIV FREE future. It is my hope that we, the collective, will all work towards a healthier life, a healthier planet, a healthier system for us all to live together and amongst. Because wouldn’t that be wonderful? And in the meantime, all the smaller bits and pieces; such as how you treat someone living with HIV, how you look upon the disabled or the weak, the poor, the disenfranchised, the elderly and the mentally compromised, plays into the compassion and love that’s required in healing. The cure is being worked on. But healing is what is attainable right now. I hope you, and all those you know, can play your part. I am.

Mitákuye Oyás’iŋ

(Special thanks to my Lakota brothers and sisters for having the bestest expression in the world!)

Shana Christensen is an enrolled member of the Kiowa tribe of Oklahoma. She has been an outspoken HIV activist and prevention educator since 1994. Shana has won numerous awards and recognition for her selfless commitment to educate at-risk communities and stop the spread of HIV, especially and including, Native American communities, people of color and women. She is a board member of A Grateful Day, a nonprofit dedicated to the de stigmatization and socialization of the Oklahoma HIV community. Shana is married and lives with her two children and adopted grandchild in a suburb of Tulsa, Oklahoma.

Important Happenings in HIV/Health Policy

Important Happenings in

HIV/Health Policy

Week Ending: March 9, 2018
By: Matthew Rose & Sable K. Nelson

 

CROI 2018 Updates
The 25th Conference on Retroviruses and Opportunistic Infections 2018 (CROI 2018) was held from March 4 to 7, 2018, in Boston, Massachusetts. Several noteworthy announcements were made:

A new CDC analysis suggests HIV prevention pill is not reaching most Americans who could benefit – especially people of color.
READ →https://www.cdc.gov/nchhstp/newsroom/2018/croi-2018.html

Utilization of HIV Testing and Prevention Services Among Persons Who Inject Drugs – Indiana, 2016
READ →http://www.croiconference.org/sites/default/files/posters-2018/1430_Tanner_962.pdf

The vaginal ring: more HOPE to the DREAM? Higher adherence and better effectiveness seen in open-label ring studies
READ →http://www.aidsmap.com/The-vaginal-ring-more-HOPE-to-the-DREAM-Higher-adherence-and-better-effectiveness-seen-in-open-label-ring-studies/page/3244527/

For more on these and other highlights from CROI 2018,
READ → http://www.aidsmap.com/croi-2018

 

Black AIDS Institute Launched its Black Women and PrEP Campaign
On March 7th, the Black AIDS Institute launched a PrEP and Black Women’s compendium containing: fact sheets, brochures, posters, presentations, etc. that were created for and by Black women. For more information,
VISIT→
https://blackaids.org/news-and-events/black-women-prep/

 

Greater Than AIDS Releases New #AsktheHIVDoc

Ahead of National Women and Girl HIV/AIDS Awareness Day, the Greater Than AIDS campaign released a series of short videos featuring Dr. Charlene Flash, an HIV specialist and primary care doctor based in Houston, TX. Focusing on women, Dr. Flash provides the latest about HIV risk, prevention, testing, and treatment. For more information,
WATCH → https://www.greaterthan.org/askthehivdoc-women-hiv/?utm_campaign=KFF-2018-Mar-HCMP-AsktheHIVDoc&utm_source=hs_email&utm_medium=email&utm_content=61143014&_hsenc=p2ANqtz-97ETfCqO-oaMfe01YNdENy7LVhS1q3VbPI75JbYSMUc8fyfokVE1Di2nbGDsPIAw1UX9eLUPNlQNyOQh2C-K6PW4_iLw&_hsmi=61143014

 

What NMAC is Doing About It

  • NMAC remains vigilant in its advocacy to protect FY18 & FY19 government funding.
  • NMAC was in several meetings on the Hill talking to offices about the importance of funding HIV
  • NMAC work to get congressional offices to support the funding letters around the Minority AIDS Initiative

 

What You Can Do

TAKE ACTION: The President’s budget has cut or eliminated many important HIV/AIDS programs, it’s going to be a fight and our movement cannot afford to stand on the sidelines.  If we don’t support and advocate for HIV funding and programs, who will?  Funding decisions for FY18 will occur in the next few weeks, so your U.S. Senators and U.S. Representatives need to hear from you.

 

Also, MAKE SURE THAT YOU ARE REGISTERED TO VOTE in time for the primary and general elections happening this year. For more information,
  VISIT→ https://www.eac.gov/voters/register-and-vote-in-your-state/

  • There are no voter registration deadlines in March.

 

Finally, PARTICIPATE IN THE PRIMARY ELECTION(S) in the month of March:

National Women and Girls HIV Awareness Day (NWGHAAD)

I am my sister’s keeper. This upcoming Saturday, March 10, 2018 marks the 13th year for National Women and Girls HIV Awareness Day (NWGHAAD), when “national and community organizations come together to show support for women and girls impacted by HIV and AIDS.”[i]  The lives and stories of women reflected in recent statistics underscores the continued need for the observance of NWGHAAD. According to the Office of Women’s Health, “about one in four people living with HIV in the United States is female. Only about half of women living with HIV are getting care, and only four in 10 of them have the virus under control.”[ii] According to the Centers for Disease Control and Prevention (CDC), “of women living with HIV, around 11% do not know they are infected.”[iii]

 

For me personally, NWGHAAD is an opportunity to thoughtfully remember the women with whom I have served alongside since I began my work in the HIV movement in the early 2000s who have passed on (but, their names live on in my heart). On NWGHAAD, and as often as we are led, may each of us take a moment to speak the names of every grandmother, mother, aunt, sister, cousin, and female friend we’ve lost to HIV. May we honor the memory of these amazing, beautiful, courageous, and strong women with a renewed commitment to end the HIV epidemic in our lifetime. We currently have the biomedical, behavioral, social, and systemic tools to successfully prevent and treat HIV. So, let’s make ending the epidemic a reality.

 

While there is much for us to celebrate on NWGHAAD (such as the decrease in annual HIV diagnoses amongst women), we must not forget the disproportionate impact experienced by cis and transgender women of color.  According to the CDC, “among all women with HIV diagnosed in 2015, 61% (4,524) were African American, 19% (1,431) were white, and 15% (1,131) were Hispanic/Latina.”[iv] Moreover, of the 2,351 transgender people who were diagnosed with HIV from 2009 to 2014, 84% (1,974) were transgender women.[v] Amongst transgender women, in that same time period, 51% (1,002) were African American and 29% (578) were Latina.[vi]

 

Addressing issues specifically faced by cis and trans women of color remains critical to end the epidemic. Since joining the NMAC team last year, I have had the honor of discussing HIV prevention and treatment with several cis and trans women of color who are living with and affected by HIV. The adverse impacts of Internalized and externalized stigma are real, pervasive and crippling our ability to prevent and treat HIV in women, especially cis and trans women of color. Many cis and trans women of color are not engaging in meaningful conversations about their sexual health. Women of color as well as their providers often do not perceive women of color as being at risk for HIV. Women of color are being talked out of HIV tests and PrEP prescriptions by their providers. Some of these women are seroconverting despite their knowledge, willingness, and the availability of PrEP. Moreover, women are being diagnosed at more advanced stages of HIV with a higher viral load and lower CD4 count due to not being aware of their status earlier. Furthermore, women are less likely to achieve viral suppression than men. All of this is unacceptable.

 

It is within our power to change this unacceptable narrative. The conversations I’ve had with cis and trans women of color from across the country, but mostly with those from the South, have challenged and inspired me to continue collaborating in order to address the unique challenges women face that hinder their ability to access and/or utilize HIV prevention or treatment services. Several opportunities can and must be pursued to end the epidemic:

  • Address unique challenges trans women of color face related to prioritizing their health care needs in a world wrought with interpersonal violence, threats of death, lack of healthcare access, housing insecurity and employment discrimination
  • Address unique issues all women of color face related to prioritizing their health care needs while juggling family, work and other responsibilities
  • Collect high-quality trans-specific data that accurately reflects the epidemic
  • Develop/Scale-up culturally responsive and linguistically appropriate prevention and treatment interventions for cis and trans Latinas
  • Educate providers about the importance of PrEP for cis and trans women of color
  • Normalize (and de-stigmatize) conversations about sexual health and behavior.
  • Recruit, hire, and equitably compensate cis and trans women of color to work in the HIV movement
  • Rethink PrEP marketing for cis and trans women of color

 

Together, as a community, we can end the HIV epidemic in women. Our grandmothers, mothers, aunts, sisters, cousins, and female friends are counting on each of us to do our part! You in?

 

Yours in the Struggle,

Sable K. Nelson

[i] https://www.womenshealth.gov/nwghaad/about-national-women-and-girls-hivaids-awareness-day

[ii] https://www.womenshealth.gov/nwghaad/about-national-women-and-girls-hivaids-awareness-day

[iii] https://www.cdc.gov/hiv/group/gender/women/index.html

[iv] https://www.cdc.gov/hiv/group/gender/women/index.html

[v] https://www.cdc.gov/hiv/group/gender/transgender/index.html

[vi] https://www.cdc.gov/hiv/group/gender/transgender/index.html

Important Happenings in HIV/Health Policy

Important Happenings in

HIV/Health Policy

Week Ending: March 2, 2018
By: Matthew Rose & Sable K. Nelson

White House Hosts Summit on Opioids

On Thursday, March 1st, the White House hosted a summit on opioids to highlight the progress the Administration has made to combat drug demand and the opioid crisis. Notable participants from the Trump Administration included:

  • Seema Verma, Administrator of the Centers for Medicare and Medicaid Services
  • Jerome Adams, Surgeon General
  • Elinore McCance-Katz, Assistant Secretary for Mental Health and Substance Use
  • Francis Collins, Director of the National Institutes of Health
  • Scott Gottlieb, Commissioner of Food and Drugs
  • Gary Barksdale, Deputy Chief Postal Inspector
  • Megan Brennan, Postmaster General
  • Rob Patterson, Acting Administrator of the Drug Enforcement Administration
  • Jesse Panuccio, Principal Deputy Associate Attorney General
  • Stephen C. Redd, MD Acting Principal Deputy Director of the Centers for Disease Control
  • Debra Houry, Director of the National Center for Injury Prevention and Control at the Centers for Disease Control
  • Thomas Homan, Senior Official Performing Duties of the Director of U.S. Immigration and Customs Enforcement
  • Peter Edge, Acting Deputy Director of U.S. Immigration and Customs Enforcement

External participants included approximately 200 individuals impacted by the opioid crisis, and non-profit organizations who focus on addiction and recovery. For more information, READ → https://www.nationalreview.com/blog/the-morning-jolt/ten-observations-from-the-white-house-opioid-summit/

 

CARA 2.0 Legislation on the Horizon:

The Comprehensive Addiction and Recovery Act (CARA) 2.0 would authorize $1 billion per year in opioid funding, a substantial funding boost over the original legislation. The bipartisan opioid legislation introduced by eight Senators on Tuesday would allocate $300 million to expand access to medication to treat addiction and $200 million to build national infrastructure for recovery support services. It would also allocate $300 million toward first responder training and access for naloxone, a highly effective opioid overdose medication. Congress approved $6 billion in funding for combatting the opioid epidemic during the February spending bill, which CARA 2.0 would draw from. It’s still unclear how that money will be distributed, as a number of appropriations committees spanning health and law enforcement activities are looking to incorporate the funds. For more information, READ →  http://www.nola.com/health/index.ssf/2018/02/sen_bill_cassidy_introduces_bi.html

 

What NMAC is Doing About It

  • NMAC remains vigilant in its advocacy to protect FY18 & FY19 government funding. We will continue meeting with congressional leaders around the importance of HIV funding.

 

What You Can Do

TAKE ACTION: The President’s budget has cut or eliminated many important HIV/AIDS programs, it’s going to be a fight and our movement cannot afford to stand on the sidelines.  If we don’t support and advocate for HIV funding and programs, who will?  Funding decisions for FY18 will occur in the next few weeks, so your U.S. Senators and U.S. Representatives need to hear from you.

Constituent Spotlight: Queen Hatcher-Johnson

Living with HIV for more than two decades isn’t keeping down. She’s now living her best life.

“HIV gave me a new birth with a new purpose to live and not just exist,” said Queen. “My life has changed for the good. I’m more honest and loyal than ever. It has opened my eyes to being healthy and staying healthy and educating others on the importance of being healthy.”

Prior to her diagnosis, Queen was a manager in hospitality and retail, “moving from state to state, running from myself; just existing but now I live with and on positive energy.”

Queen is currently a Clinic Office Associate for Positive Impact Health Centers in Georgia. There, she describes herself as “the face of the center.” She greets all incoming patients and guests, schedules appointments, and handles patient billing.

She’s also a committed volunteer and community speaker, working with organizations like Harlem United, AIDS Atlanta, and the Atlanta Policy Academy. And she’s happily married to her husband Terrance and the proud parent of two Yorkies, Lady and Rolex.

She’s also a participant in NMAC’s Building Leaders of Color (BLOC) program to train new leaders in the fight against HIV.

“NMAC has given me the knowledge to understand the language at board meetings, how to represent and speak up for myself and my community,” said Queen. “They’ve taught me successful leadership skills, how to deal with stigma, and so many skills. I could go on and on.”

NMAC is honored to have Queen as part of our activist family. And we hope she will keep going “on and on” as a leader in the movement.