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:

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.

• Find your U.S. Senators: https://www.senate.gov/general/contact_information/senators_cfm.cfm
• Find your U.S. Representative: https://www.house.gov/representatives/find-your-representative

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/

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

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.

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 Center, and 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 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. 

NMAC’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.

HIV 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.

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.

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.