Week ending: April 12, 2019 By: Sable K. Nelson HIV Rates Are Rising Across the American South in States That Didn’t Expand Medicaid Dramatically reducing HIV infections in the next decade will prove very difficult—and may be impossible with cuts to Medicaid or the repeal of the ACA. For more information, READ. Kaiser Family […]
NMAC will be closed today as we celebration Emancipation Day. On April 16, 1862, President Abraham Lincoln signed the Compensated Emancipation Act and freed more than 3000 slaves in the District of Columbia. However, slavery did not end in the rest of the United States until after the American Civil War, which lasted until 1865. In honor of this important day, here is an email from jessi Mona Cartwright-Biggs where she calls out NMAC. With her permission, I am sharing this email because it is a treatise on the power of language.
Howdy from Positive Women’s Network-USA Greater Houston Area, Texas Chapter.
I am a proud NMAC Member. I joined when I first heard of you. You were kind enough to feature me in your Newsletter AND in my ignorance, I did not realize I was going public. Yikes! It’s all good now, no worries.
The benefits of being public with my status, as a Black American Senior Woman living with HIV has been so rewarding. I want to mention that the shame, guilt, and loneliness are no longer a part of my life today. The reasons for this positive [no pun intended] transformation are many. However, I ask you to understand one essential extremely important factor that continues to help me live the life I live today free of Stigmatizing Language.
I am not sure you can identify with the words… However, I can. I am not yellow. I am not brown. I am not green. I am not pus. Pus is an infection and the colors noted are colors of an infection. I am not infected. I am a clean Black woman living with the human immunodeficiency virus called HIV.
I was uneasy, disheartened and not happy to see and read such an abundance of stigmatizing language on your website… hurt.
I am asking for your purposeful & authentic support in promoting an END to the HIV epidemic. I am asking for an immediate project to review and amend the stigmatizing language being used on the NMAC website. Thriving with HIV is a place in a space that need not see, hear nor read stigmatizing language anywhere. I totally get that this will take time. As time changes please adapt and change the harmful language on the NMAC website, please. Thank you.
PWN-USA GHA-TX Chapter
Reading this email, I felt shame, anger and pride. Shame and anger because NMAC made a mistake, but so much pride in jessi Mona. She spoke truth to power and made her case as only a women living with HIV can. Calling someone out, even your friends, is central for how communities without privilege speak. If you don’t understand this reality, the experience can be alarming. If it’s not happening at your planning council meetings, then you are speaking to the wrong people. Now is not the time to only work with people who agree with your point of view. Leadership understands the importance of honoring the culture and values of the communities we need to reach to end the epidemic.
NMAC hopes community planning councils (or whatever they are going to be called) include orientation by local leaders from the communities needed to be reached and to understand that being called out should be embraced and not feared. For far too long, NMAC tried to make everything perfect. Our movement is too diverse and the culture of being called out is too engrained. Rather than making everything perfect, we’ve had to learn how to embrace the messy nature of our work and the reality that we can’t please everyone.
Our efforts to end the domestic HIV epidemic must reach communities that have eluded previous efforts. We cannot do things the same way and expect a different result. jessi Mona shared another important lesson when she wrote, “The benefits of being public with my status, as a Black American Senior Woman living with HIV has been so rewarding. I want to mention that the shame, guilt, and loneliness are no longer a part of my life today.” Too many suffer from stigma society places on people living with HIV. This stigma can lead to isolation and depression. NMAC believes depression is a major contributor to lack of adherence and falling out of healthcare. jessi Mona became part of a cause bigger than herself when she joined PWN-USA GHA-TX Chapter. Through this community of women living with HIV, she found the support that helped her to rediscover her power and voice. When you believe your life matters, then it’s much easier to do what is necessary to survive.
We are betting on a biomedical solution that will hopefully give us a “herd” theory of immunity, but that only happens when people are retained in healthcare and adherent to meds for decades. After I got her email, I immediately wrote back and said, “I am so sorry, yes, I will ask staff to review and correct.” jessi Mona’s final communication to me:
Oh, Mr. Kawata,
You are the best! Your prompt response and recognition of this important matter have touched me. I appreciate you. Thank you so much.
I shared this story because it put me in a good light, but it didn’t start there. You should also know that I forwarded these emails to staff and let them know our web page needs to be fixed immediately! Please check your web sites, e-newsletters, and social media feeds to be sure your language does not stigmatize the communities you need to reach. This is particularly important for federal HIV communications. As leaders of this effort, you set the tone for all of our work.
Yours in the struggle,
By Nikki Calma
I was fortunate to receive a scholarship from 50+ Strong and Healthy Program to attend this year’s 2019 National HIV Prevention Conference in Atlanta, GA. It has been a while since I attended this particular conference. I also was given the opportunity to attend last year’s USCA conference thru the 50 + Strong and Healthy Program.
From the moment I arrived at the hotel, it was obvious that people’s energy was really pumped and excitement was in the air. Although there was a big group of folks who arrived late for the entire conference, it was nice to observe folks from different states and organizations greet each other with warmth, catch up, and brag about what’s been going on in their respective programs. I also felt a great rush to see so many trans folks attend this year. Plus, I think there is something good to be said about having this conference in Atlanta and in these two amazing hotels, the Hyatt Regency and Marriott Marquis. Both can accommodate the amount of attendees in terms of conference needs and kept the attendees together, plus the hotel staff has been most courteous and unassuming.
Like last year at USCA, PrEP has been on people’s lips. More so this year at this conference, with a PrEP workshop or research or two that was being presented almost each day of the conference. This is such a good move towards all the initiatives being done by CDC and different cities, I think it is important to always remind ourselves that there are challenges that certain communities may face to access PrEP. For example, the trans community was the last to which PrEP marketing was implemented. Many trans folks have to prioritize their immediate needs around medical transition procedures and to add PrEP may be something that may not be a priority for many.
I was also concerned with all the push for PrEP uptake and information at this conference. It was obvious that many who just got into working in this field may be missing some of the basic history of HIV /AIDS and how we got to get to this day and age of this epidemic. It was nice and refreshing to attend the “Storytelling Sessions.” For me, it put that “human” factor for this conference. In these sessions, I heard amazing stories from people who have been impacted, living with, and worked with HIV. This was such a brilliant feature of the conference. I observed people who smiled authentically, moved with tears, and definitely inspired many. It fed the soul for those who was working tirelessly with their communities around HIV.
Even though we are in a day and age of advancement of treating HIV, for someone like me who loves doing this work and serving the community, it is important to have a strong reminder that the reason I got involved 25 years ago in HIV is because it affected me, my friends, my loved ones, and my community.
Week ending: April 5, 2019 By: Sable K. Nelson Gilead Submits Supplemental New Drug Application to U.S. Food and Drug Administration for Once-Daily Descovy for HIV Pre-Exposure Prophylaxis On April 5, 2019– Gilead Sciences, Inc. announced that it has submitted a supplemental New Drug Application (sNDA) to the U.S. Food and Drug Administration (FDA) for […]
April 9, 2019
Dear Dr. Redfield:
One year ago, I wrote an Open Letter asking you to create a federal plan and the necessary funding to end the HIV epidemic in America. Thank you for your response and commitment to make this real.
Last week you spoke at AIDSWatch and got called out by community. Welcome to the family. As a person who gets called out frequently, I know it can be confusing. HIV disproportionately impacts oppressed communities. We speak up and call out leaders because we are hurting. Bob, you’ve worked on the frontlines of the epidemic in Baltimore, so I know you understand. If you didn’t hear it, I want to say thank you for speaking at AIDSWatch. As messy and challenging as community can be, we are the only road to ending the epidemic.
We come from very different worlds, yet this virus has brought us together to collaboratively figure out solutions to end an epidemic. That is the messy part of HIV; people who would normally not socialize have to come together to talk about some of the most intimate matters. I remember going to a retreat where I had to talk about sex with Dr. Jim Curran. I am not sure who was more uncomfortable. Jim blushed and stuttered as told me that in his day, he was a “hot” number. I could see it and I’m sorry Jim for outing you. He shared personal information because he knew it would build a bridge to someone with a very different life experience.
The solution to ending the epidemic is about building bridges with people who are different from you. It’s about understanding that race, gender, gender identity, and sexual orientation are more than classifications. They are the lens that shape our view of the world. Unfortunately, our contributions are often minimized because we are different. Understanding this dynamic is key to ending the epidemic. While the solution is biomedical, it has to happen in oppressed communities that don’t trust the government or the healthcare system. You may not believe your race gives you privilege, but the communities you need to reach would beg to differ. To reach people of color, you have to understand how race impacts our world and the choices we have to make. Just this week there is talk of bringing in the National Guard to St Louis to stop the violence. Let’s get real about what it means to end the HIV epidemic in this environment.
It is not just a matter of prescribing meds. Solutions must address the social dynamics that keep us separate. I get concerned that we will prioritize prescribing PrEP and not address the reality that only 34% of the people who start PrEP stay on their medication longer than 12 months. Why have one third of the people living with HIV fallen out of healthcare or are unaware of their HIV status? The solution is much more complex than handing out drugs.
Early in the HIV epidemic, we quickly learned that the medical model did not work for people living with HIV. As a result, our movement built new systems of healthcare. Thanks to the Robert Wood Johnson Foundation, the continuum of care model became the standard for HIV care and treatment. This new model was created by the HIV community because taking care of people we loved showed that our friends needed more than the medical model could provide. A network of social services like buddy programs, legal services, nutrition, and housing were key to our ability to help people live longer.
The HIV community had to innovate because the old models did not work for us. We cannot afford to go back to a medical model for the solution to end the HIV epidemic. We need solutions that reach gay men, particularly young gay men of color, the transgender community, people over 50 living with HIV, women, particularly black women and Latinas, and drug users. As we learned during the beginning of the epidemic, traditional models do not work when you need to reach oppressed communities.
The Positive Women’s Network, the National Working Positive Coalition, the Sero Project, and other PLWH coalitions fight for the value of “nothing about us without us.” These words apply to people of color, the transgender community, and people on PrEP. In fact, they apply to all the communities highly impacted by HIV. NMAC is concerned that decisions are being made without community. The format for the listening sessions does not allow for meaningful interchange. Leaders at the CDC are making decisions about how community planning will work, which interventions will be prioritized, and what type of capacity building will be used, all important issues that should include community. Limiting community input to community planning misses the whole point. Your process of developing a plan to end the epidemic should mirror the values and principles you ask of the community planning process. It should bring community and government together to make the key decisions.
I’ve been writing my Ending the Epidemic e-newsletter to speak indirectly to the decision makers. Please know how much I want you to succeed, but it won’t happen without us. We are about to attempt the impossible: to end an epidemic without a vaccine or a cure; to reach 400,000 PLWH who have fallen out of care or are unaware of the status and 975,000 more people who can benefit from PrEP. Many of the folks we need to reach are some of the most marginalized in America. They don’t trust the government because they believe the government runs the systems that oppress and discriminate against them.
Thank you for agreeing to speak at the opening of the 2019 United States Conference on AIDS. You should expect similar concerns will be raised; however, I know you will rise to the challenge. This year’s Opening will be staged like the Sunday Morning Talk Shows. You will be interviewed by a moderator. We are trying to get Don Lemon. Maybe we can’t get people to cheer for you, but they also don’t cheer for me. Every year I get called out. Federal leaders need to attend USCA because we cannot end the epidemic without reaching the communities that are highly impacted by HIV. The only way to get to them is through us. A smarter woman might say maybe we should work together.
Yours in the struggle,
Important Happenings in HIV/Health Policy Week ending: March 29, 2019 By: Gina Bae & Sable K. Nelson CDC: 40% of People Living with HIV Cause 80% of New Transmissions Shortfalls in HIV testing and treatment are hampering efforts to stop new infections of the AIDS-causing virus in the United States, the Centers for Disease Control […]
What will it take to end the HIV epidemic in your jurisdiction? Now is the time to gather your strategy. The initiative’s work starts with community planning councils (not their real name, the final name has yet to be determined). Their job is to put together the local plan. Sometime in FY 2020, funds will hopefully be granted to implement the priority components of the local plans. With ongoing data collection and shared evaluation tools, successful programs can be identified and replicated.
Our planning is missing scientifically approved interventions that successfully keep people living with HIV (PLWH) and people on PrEP in healthcare and on meds. NMAC believes this information is key to our ability to end the HIV epidemic. While health centers are a great place to get healthcare, they don’t have the retention services this initiative requires to be successful. Retention and adherence efforts should be done through community-based organizations with a proven track record of reaching the priority populations. All the interventions should be led and staffed by the people the intervention hopes to reach. These efforts must work closely with their Center for AIDS Research (CFAR) to document the implementation science needed for more funding.
- Community Planning Councils
- Program Implementation
Community Planning Councils
Soon $30 million in new planning money will go to 58 jurisdictions to build plans to end the HIV epidemic in their city, county, or state. Local planning groups should reflect the local HIV epidemic. Now is the time to identify leaders to add to existing or new planning councils, particularly leaders from the communities with the greatest need. While many jurisdictions have comprehensive plans, they tend to be limited to resource rich regions. There are many jurisdictions that need support and should be prioritized for training and technical assistance.
NMAC believes local planning councils should lead with race and:
- reflect the demographics of the local epidemic
- prioritize people living with HIV
- use transparent decision-making process
- have transparent distribution of resources
- be data driven
- understand that data for the transgender community is often incomplete
- receive training and technical assistance on biomedical HIV prevention, use of data, retention in healthcare, evaluation and other topics of value
- offer specialized training that supports underrepresented communities to sit at the table
- develop web portals that use technology for transparency and to manage the planning councils
Plans to end the epidemic should prioritize interventions that successfully retain PLWH and people on PrEP in healthcare and adherent to meds. There is a long-term behavioral component to this biomedical solution, particularly for PLWH who have fallen out of care. It has been well documented that too many people over 50 living with HIV suffer from stigma, isolation, and depression. Programs must incorporate trauma-informed care to reach those most vulnerable and address the mental health challenges that impact too many living with HIV.
NMAC believes planning councils should prioritize:
- biomedical solutions (PrEP & U=U)
- HIV wrap around services that allow biomedical solutions to work
- STD and hepatitis testing to identify people who could benefit from PrEP
- funds for community organizing of at risk populations to boost outreach efforts
- funding for community-based organizations
- transparent grant making
- program led and staffed by the communities the initiative hopes to reach
- mental health services that are key to reaching the most vulnerable
The planning councils and the programs being implemented need clear evaluation tools in advance of implementation. The tools should help both the councils and the providers better understand the success and challenges of the planning process and the programs being implemented. Transparency of data is critical to successful replication.
NMAC believes evaluation should be based on:
- real numbers, i.e., the number of PLWH who are retained in care and their viral load and the number of people who have stayed on PrEP for longer than 12 months
- national criteria/standards so that initiatives can compared across jurisdictions
- inclusion of CFARs, which should be brought into the process from the beginning
- annual in-person updates for the community on the success or challenges of the initiative
- data that are placed online for everyone to access
Reaching the 400,000 PLWH and 975,000 more people on PrEP requires strong linkages to the target communities. Community organizing is key. Efforts from the government can be viewed with suspicion. Now is the time to support networks of people living with HIV and people on PrEP. Government solutions need the buy-in and trust from the communities they hope to reach. Too many previous attempts were highly proscribed. It is time to shift the HIV paradigm to prioritize 400,000 PLWH and 975,000 more people on PrEP.
Yours in the struggle,
Important Happenings in HIV/Health Policy Week ending: March 15, 2019 By: Sable K. Nelson Trump Administration Releases its FY20 Budget Request Trump Administration Releases its FY20 Budget Request On March 11, 2019, the Trump Administration released its FY20 budget request to Congress, including top-line funding requests for federal HIV/AIDS programs (for more information: https://www.whitehouse.gov/wp-content/uploads/2019/03/budget-fy2020.pdf). The […]
Important Happenings in HIV/Health Policy Week ending: March 8, 2019 By: Sable K. Nelson & Matthew Rose NOTE: President Trump released his FY20 budget request to Congress, including top-line funding requests for federal HIV/AIDS programs, on March 11. Supplemental information, including line item details for each agency, is expected to be released on March 18. […]
Important Happenings in HIV/Health Policy Week ending: March 1, 2019 By: Sable K. Nelson & Matthew Rose Drug-Company Patents vs. the Public Good: Should the NIH Break This Medication Patent? Truvada, which is made by California-based Gilead Sciences, is the only drug approved by the FDA for pre-exposure prophylaxis, or PrEP, a course of treatment […]