Being an HIV 50+ Scholar at USCA 2018 – Part Two

We asked several of the 50+ Strong and Healthy Community Scholars to share their USCA experience with us. This week, we have Miguel Ángel Delgado Ramos of Puerto Rico.

The fact that I was granted a scholarship to participate in the United States Conference on AIDS, and participate in the educational experience for HIV-positive people over 50, meant an important recognition to me as a 64-year-old homosexual man living with HIV for 29 years. It was an honor that I was granted because of the number of people who applied for the scholarship. I accepted the same with great joy, as this is the most important conference for us HIV-positive people, and also with great responsibility. From the moment I submitted the scholarship application, I knew that my commitment to the community would be stronger.

Already, from that moment I began to think about what my response would be once I returned to Puerto Rico, although there were still many weeks left for the conference. My community response due to my participation in USCA was strengthened every day, due to the warmth received from the High Quality Work Team led by Moisés, who monitored me day by day and did not neglect any details. Thank you, Blessings. The program offered for HIV-positive people over 50 was very complete, varied, entertaining, and educational, and selected topics were relevant and emotional. The group was manageable and the presenters were professional.

This experience of USCA 2018? It was the Conference of Conferences: Every detail thought, every need satisfied, The Plenaries unsurpassed. It was extraordinary.

What it Means: Overcoming fears of the language when facing a small group that required my active participation in each moment; Sharing my experience as a positive man over 50; To be moved to tears by shared experiences; I laughed a lot for the curiosities of the and the scholars; I brought a wealth of information, knowledge and experience that I am eager to share in Puerto Rico; the interaction with Paul Kawata. Also, this USCA strengthened my commitment to join the voices that promote the improvement of the quality of life of HIV-positive people in Puerto Rico.

“I Live In the Basement”

By NMAC Conferences Coordinator Aryah Lester

Aryah LesterI live in the basement: the lowest floor of the social systems we have here in America. Above me live the middle-class: not concerned with the trials of the lower class; the privileged: living in a bubble of supremacy; and the blessed: ignorant of truly fighting for acceptance into humanity. Proud and jubilant footsteps drum upon my ceiling from the house parties of the heterosexual, the men, those not of color, and even the LGB crowd. You see, I am a transgender woman of color, and my lot in life has been to continue striving towards access above the basement of this country: to fight not only for myself, but for my sisters trapped with me.

In my 36 years of life, I had first learnt about the perceived differences in skin color, notwithstanding our commonality or upbringing. A youth attending middle school in the rural south, I experienced statements like: ‘Nigger, get off my property’ (italicized with a shotgun). I empathized with my father when he was refused well-deserved promotions because he was of color, and my mother (of many talents) who took care of her household with jobs such as housekeeper and home health aide.

Our school cafeterias had an invisible yet distinct line, across which you saw white faces on one side, and all those darker on the other. I first realized there was a floor above me. As someone who was always feminine, I quickly then learned the demeaning micro- (and outright violent) aggressions against women or femininity in our male-dominated society. I had begun to hate the parts of me which exuded the power of women: my butt, my lips, my voice, and my lack of body hair. Women all around me were delegated to the floor below in their homes, at their jobs, and in the public. Women in our history books were often just sidekicks of ‘greater’ heroes, who all happened to be male. Even the Christianity I was taught regarded the creation of the female body as a ‘complement to’ the man.

When I started transitioning in the year of 1998 and entered my life as a transgender person, the basement door became sealed. I found myself pounding on the door for employment, searching for the keys to a healthy relationship, and trying to break the windows of public opposition. Time and time again I was teased, or straight out denied access to the life we all deserve: simple, quiet. It was at that time I started to be educated in HIV/AIDS, from an organization I volunteered at: the New York Peer AIDS Coalition. I discovered the increased risk I faced in just being me, a transgender woman of color. I started educating my peers in easy ways, through distribution of condoms and lube to my fellow party-goers and streetwalkers. My path had begun. I remained, however, in the basement.

I literally resided three floors below the tragic site of my infection. Even now I can picture and smell the scene, which encapsulated my lifelong residence of the American basement. I was staying (unofficially) with a close friend in the south of Miami-Dade county, after losing my apartment and finding myself chronically unemployed. Getting up one day in November of 2013 from the couch I slept upon,  I went downstairs to the store. Returning to the building, I entered with a handsome young man who sparked a conversation with me, and then invited me upstairs to continue to talk. I saw no harm in the invitation, especially with the security of the development vetting his presence. I followed him to the upper floors.

Once entering the door, I immediately knew the situation was not what I could have imagined. The apartment was one which was empty and abandoned, and smelt of secret parties, urine, and excrement. With his body pressing me against the wall and my body on the floor in quick succession, I could only think of my stay in the basement. ‘I could scream.’ ‘My friend might be blamed.’ ‘I might be kicked out, not being on the lease.’ ‘Who’s going to believe me?’ ‘Just take it, you’ve been raped plenty of times before.’ When he finished and was in the lethargic state of ‘after-sex’, I rose my bloodied and hurt body and quickly headed out, with not a word to anyone about the situation which occurred.

A couple of months went by and I found myself in the hospital from common yet severe symptoms without a source. A few weeks later, I found myself training counselors for HIV testing due to my years experience working in the field. Using myself as a test subject, I noticed the shockingly reactive test result. I grabbed my friend and we tested myself again, proceeding to complete an anonymous confirmatory test for the laboratory. I already knew my recent encounter infected me; I knew my mind trapped in the basement allowed it to happen with no consequence.

It did not matter to my advocacy because people already assumed I was HIV-positive because of my dedicated work in preventing HIV/AIDS in our communities for years. It did matter to my psyche, it mattered to my pride, and it mattered to my future. Most importantly, it mattered to my resolve: to help my sisters get their minds out of the figurative basement, and to see their worth. The worth of their bodies. The worth of their femininity. The worth of their color. Their worth. My worth.

Puerto Rico One Year Later

By Moises Agosto, Treatment Director

Today marks one year since Hurricane Maria devastated Puerto Rico. Recovery has been painfully slow. NMAC is proud to take part in the “Take Action for Puerto Rico” campaign. As a native Puerto Rican, this tragedy has struck me personally. Here’s how:

On September 20, 2017, Puerto Rico was struck by Hurricane María, a category 4 storm for which the island was not prepared. Previous to María another powerful storm, Hurricane Irma, brought to Puerto Rico extreme winds and rainfall, enough to leave one million people without electricity and the island vulnerable to the force of María.

These atmospheric phenomena were not the only reason for such a devastation in the aftermath of the storms. The detrimental financial situation of Puerto Rico, due to decades of fiscal mismanagement and corruption among elected officials, has had an impact on the infrastructure of the island. Therefore, when the hurricanes struck the island, what was left of infrastructure collapsed, including the outdated power grid weakened by Irma. There was no electricity for more than six months on the whole island. Still today there are jurisdictions without electricity

The people of Puerto Rico were already experiencing a sense of loss and disappointment before the storms. First, at their elected officials and second with the imposition of a Federal Fiscal Control Board to take over the finances of the “Shining Star” of the Caribbean. This federal government imposition highlighted the fact that Puerto Rico is only a territory with no political power to influence the US Congress neither the authority to receive help from foreign countries. In other word it is a colony govern by the congress of the United States of America. An at-large collective realization of the territorial status took place demoralizing Puerto Ricans on the island and mainland. Puerto Ricans were reminded that they are second class US citizens.

With all of that chaos for the average Puerto Rican, imagine what life has been like for those living with HIV. For a year now, their medical care has been, at the very best, interrupted and, at worst, nonexistent. That means their health and their lives have been endangered by this fiasco. The impacts of that lost care can’t be regained. And, unfortunately, there is still no real end in sigh for them.

The aftermath of Hurricane María changed the live of all Puerto Ricans. Puerto Ricans were not only reminded of their second class status but treated as such by the president of the United States, the US congress, the Federal Emergency Management Agency (FEMA), and the local government of Puerto Rico. The only response worth acknowledging is the community based organizations that without many resources were able help and bring to safety thousands of Puerto Ricans in rural and urban regions.

Hurricane María was a life changing experience for those in the island and those in the US mainland. Hundreds of thousands of Puerto Ricans moved to the US mainland, among them my parents. William Agosto, 80 years old, and Carmen Eva Rosario, 78 years old. The day after the storm my nephew, siblings and I agreed that without electricity their lives were in danger. We were lucky to have friends and some resources that allowed us to move them to live with me in Maryland. They both have a number of chronic diseases that require monitoring, constant doctor visits and the 24/7 company of a healthy adult.

The life of my parents and my own changed. The Puerto Rico we know has disappeared and the one to be formed after María will be foreign to us. My parents are not ready to go back and I am not ready to let them leave because after María they are my homeland, my enchanted island.

Social Media Fellows Chosen for USCA

USCA 2018 LogoOur USCA Social Media Fellowship program has chosen 17 participants out of more than 150 applicants for this year’s conference. The Fellows will work together to tell stories from USCA on their social media platforms that will be shared and distributed by USCA partner FHI 360.

Aaron Anderson Allen Park, MI
Alex Moz Washington, DC
Alexis Powell Baton Rouge, LA
Arnoldo Galindo Las Vegas, NV
Brandaun Dean Washington, DC
Chinedu Nwokeafor Baltimore, MD
Claire Gasamagera Allen Park, MI
Derek Baugh Lithia Springs, GA
Eddie Gonzalez Houston, TX
George Johnson Brooklyn, NY
Jarred Clemons Memphis, TN
Jennifer Vaughan Watsonville, CA
Kavon Jones El Cerrito, CA
Krupa Mehta Baltimore, MD
Lazaro Solorzano Jr Capitol Heights, MD
Sam Graper Orlando, FL
Tiffany Marrero Deerfield, FL
Xiomara Mora-Lopez West New York, NJ

Congratulations to all of the 2018 USCA Social Media Fellows! We are very excited to see what you can do.

My Perspective: The 2018 International Conference on AIDS

By Linda H. Scruggs, Acting Director, NMAC’s Leadership Pipeline Program

A few weeks ago, I had the great opportunity to travel to Amsterdam, Netherlands to attend the 22nd International AIDS Conference (IAC), which I learned while in Amsterdam, “is the largest conference on any global health issue in the world.” The 2018 conference theme was “Breaking Barriers, Building Bridges.” The theme implores the HIV community to continue to maintain and expand its commitment to addressing social determinants of health using social justice and human rights frameworks to reach key populations. I was particularly interested in hearing about pre-exposure prophylaxis (PrEP) uptake and services, progress towards the 90-90-90 target, increasing capacity for test and treat via differentiated service delivery approaches, client outreach and retention methods, and responding to the criminalization of HIV transmission.

The importance of redoubling our efforts to remove harmful HIV criminalization laws

I must say I was also very excited to see that global HIV advocates and allies are working together to bring attention and to change policies that unfairly criminalize HIV. In addition to presentations in the Global Village and the main conference, HIV Justice Worldwide organized a pre-conference symposium, “Beyond Blame: Challenging HIV Criminalization,” which focused on identifying ways in which punitive laws and their enforcement can be rigorously challenged.

I have been following HIV criminalization domestically through the work of the SERO Project and the Positive Women’s Network-USA and how these bad laws have altered our right to disclosure, an often lifesaving decision for people living with HIV, particularly women. The advocacy community has been successful at changing the hearts and minds of members of the HIV community and even changing laws at the state level. As is also noted by these advocates, much remains to be done to ensure that people living with HIV as well as our brothers and sisters sitting in prison or awaiting processing through the criminal justice system are free from the draconian nature of these laws.

The diversity of people living with HIV who chose to lift their voices on this issue at AIDS 2018 profoundly moved me. It gave me an opportunity to hear the impact of HIV criminalization through a different set of lenses to hone in on how these bad laws are a significant deterrent to global and domestic efforts to end the epidemic. Fueled with a new sense of urgency, I have decided to make this one of the cornerstone issues for upcoming women initiatives NMAC will support this year.

The invisibility of women of African descent from developed countries at AIDS 2018

As I shift to another thought of AIDS 2018, I want to express my gratitude to the organizers of another event I attended specifically for and by women of African descent impacted by HIV. Women Now! under the leadership of SisterLove, in partnership with the Global Network of People with AIDS (GNP+), and HIV women networks from Africa and across the globe have taken up the leadership mantle to organize women of the African diaspora living with and affected by HIV. Over 125 women primarily of African descent from around the globe were in attendance at Women Now! 2018, a three-day Summit preceding AIDS 2018. At Women Now! 2018, I experienced powerful speakers, group discussions, and actions. One action, in particular, led to a representative from a global health organization committing to bring women, particularly women of African descent, to the forefront of the global HIV movement and ensure gender and cultural responses to ending the epidemic.

During this discourse, two concerns became clear to me during the course of this three-day summit. The first concern is the untold story of Black or women of African descent living with HIV who live in so-called developed countries (a.k.a., high-income countries). The second concern is the tension between Black women living with HIV from low-income countries and high-income countries resulting from how each group experiences HIV.

A. A story within a story. 
In principle and practice, it is crucial for the global community to hold high-income countries accountable for addressing the needs of countries in need of resources to fight the HIV epidemic. I support these efforts. The gains we have witnessed would not be possible without this support and the advocacy of many global HIV advocates and activist who made this happen. On the other hand, it is essential for the worldwide community also to acknowledge that many of the Black communities across the U.S. are experiencing not only disproportionate rates in their home countries but HIV rates of infection and mortality rates comparable to HIV rates in South Africa and other parts of Africa. We need our global brothers and sisters to advocate for a PEPFAR to address the health disparities of black and brown people in developed countries. Despite the scientific and service delivery innovations, Black people in the U.S., as around the globe, still have higher rates of HIV and higher rates of mortality. We need your support in our fight as well.

B. Same story but different perspective.
In the HIV discourse over the last five years, I have witnessed the disappearance of women living with HIV, explicitly black women living with HIV. Astonishingly, coming to Amsterdam revealed that black women living with HIV from high-income countries are also held to a different standard than our African sisters living with HIV. Some of this misperception could be how the HIV epidemic is characterized by high income vs. low-income countries with little to no flexibility allowed for consideration of impoverished communities and communities of color in these high-income countries. Racism and sexism work are structural factors, which affect the everyday lives of people of color and women across the globe.

I hope that as we continue to develop new programs and opportunities, that we be mindfully diligent to create meaningful platforms where we can learn about each other across the globe and devise plans for how we can meaningfully support one another. Over the next few months, NMAC’s Leadership Pipeline will look to develop new partnerships with women-focused organizations and networks to help and provide engagement to ensure that women of color are strengthened and provided the tools to create a new dialogue that moves us closer to ending this epidemic.

NMAC Welcomes 2018 HIV 50+ Strong and Healthy Scholars!

HIV 50
NMAC Welcomes 2018
HIV 50+ Strong and Healthy Scholars!

USCA 2018 LogoNMAC is pleased to announce the 2018 HIV 50+ Strong and Healthy Scholars! Our goal is to educate and build leadership among people over 50 living with HIV. Through this year-long program, the selected scholars find/affirm their purpose, expand their scope, and offers the chance to reinvent themselves to become active individuals in their respective communities.

The HIV 50+ Scholars will attend the U.S. Conference on AIDS (USCA), held September 6-9 in Orlando, FL. During the conference, they will participate in sessions meant to advance their leadership skills, build community, and enhance their advocacy skills.

Congratulations to the following scholars for their acceptance into the 2018 HIV 50+ Strong and Healthy Program:

FIRST NAME LAST NAME CITY STATE
Sylvester Askins Portsmouth Virginia
Wanda Brendle-Moss Winston-Salem North Carolina
Reginald Brown Brooklyn New York
Robert Cooke Washington District of Columbia
Ms Billie Cooper San Francisco California
Robert Cornelius Chattanooga Tennessee
Miguel A. Delgado-Ramos Cidra Puerto Rico
Sonya Edwards Houston Texas
Regis Fontenot Arlington Texas
Zeke Garcia San Antonio Texas
Paul Grace-Neal Oxon Hill Maryland
Christine Kapiioho Wailuku Hawaii
Kenneth Lamb Bellingham Washington
Steven Manning San Antonio Texas
Rodney McCoy Silver Spring Maryland
Terry Munn Durham North Carolina
Raphiatou Noumbissi Havertown Pennsylvania
Kneeshe Parkinson Arnold Missouri
Debra Parmer Richmond Heights Ohio
Venice Price Chula Vista California
Michele Princeton Cleveland Ohio
Rosa Rivera Aviles San Juan Puerto Rico
Raul Robles Chula Vista California
Ricardo Rodney East Orange New Jersey
Alexa Rodriguez Washington District Of Columbia
Juan M Rodriguez Lopez Washington District Of Columbia
Thomas Sampson CHICAGO Illinois
Brenda Vanneza Scalant Pembroke pines Florida
Janice Shirley CHARLOTTE North Carolina
Jonathan Spain Virginia Beach Virginia
John Tenorio Canon City Colorado
Robin Webb Cleveland Mississippi
Martha Zuniga Seattle Washington
 

Returning Scholars from Previous Cohorts (2016 & 2017)

FIRST NAME LAST NAME CITY STATE
Nicholas Alvarado San Francisco California
Nikki Calma San Francisco California
Randall Furrow Phoenix Arizona
Lillibeth Gonzalez NYC New York
Rick Guasco Chicago Illinois
Jared Hafen Salt Lake City Utah
Michele Jackson Rollins Cleveland Ohio
Eric Jannke Palm Springs California
Bryan Jones Cleveland Ohio
Patricia(Pat) Kelly Orangeburg South Carolina
Randal Lucero Albuquerque New Mexico
Russelle Miller-Hill New York New York
Robert Pompa Jim Thorpe Pennsylvania
Joey Pons San Juan Puerto Rico
Rob Quinn Boston Massachusetts
Robert Riester Denver Colorado
Esther Ross Greenville North Carolina
Nancy Shearer Santa Monica California
Michael G. Smith Santa Fe New Mexico
Valerie Spencer Pomona California

Special Note: Standard Registration for USCA ends on Friday, August 10, 2018. For more information about this and all of the conference’s registration rates visit the USCA registration page: here

Important Happenings in HIV/Health Policy

Important Happenings in
HIV/Health Policy

Week Ending: August 3, 2018
By: Matthew Rose & Sable K. Nelson

Opportunities for Input: Let Your Voice be Heard

Leading up to the US Conference on AIDS (USCA) in September, Act Now: End AIDS is soliciting community input to inform the creation of a federal plan to end the epidemic. It is vital that we hear from affected communities from around the country. There are four primary ways to make your voice heard:

  1. An online recommendation form at https://survey.co1.qualtrics.com/jfe/form/SV_eWde8Hsj4p0L4UJ. SUBMISSIONS DUE BY AUGUST 10.
  2. Online webinars covering key recommendation topics ( prevention and testing, care and treatment, structural interventions, research, viral hepatitis, sexually transmitted infections, opioids and the overdose epidemic, data and metrics.
  3. Web-based meetings and conference calls led by and soliciting input from specific affected communities
  4. An in person pre-USCA meeting to discuss an early draft of the plan to be held on September 5 in Orlando, FL.

We invite you to use any and all of these options to provide recommendations for the plan. The online form may be used for as many recommendations as you want to submit. While individuals are absolutely invited to submit online recommendation forms, we also encourage submissions from groups.

 

Research Confirms Targeted HIV Interventions Needed for Older Adults and LatinX Communities

A recent study published by the University of California – Riverside argues that interventions are urgently needed to reach older adults and Hispanics to address HIV testing and beliefs. The study entitled “How age and ethnicity impact HIV testing” looks into the many barriers that prevent people from getting tested for HIV, including lack of knowledge, competing priorities during medical visits, and stigma associated with the test on the part of both the patient and provider.
For more information, READ https://www.sciencedaily.com/releases/2018/08/180803160245.htm

 

Hospital Cost Transparency
On August 2, 2018, the Centers for Medicaid and Medicare Services (CMS) released its annual Inpatient Prospective Payment System rule. The mandate, which takes effect on January 1, is aimed at boosting price transparency and accessibility. Starting in 2019, hospitals will be required to “make public a list of their standard charges via the Internet in a machine readable format, and to update this information at least annually.” Hospitals previously had to make their prices available only upon request. Patient advocate organizations may find this transparency effort somewhat toothless, as CMS had already required hospitals to make their standard charges public. CMS had originally floated the prospect of imposing additional transparency provisions but opted against any immediate action in the final rule.

For more information, READ  http://thehill.com/policy/healthcare/400279-new-trump-admin-rule-requires-hospitals-post-prices-online; https://www.beckershospitalreview.com/finance/cms-final-inpatient-payment-rule-for-2019-9-things-to-know.html

 

Watch: What You Should Know about the New Rule on Short-Term Health Plans
The Trump administration moved to finalize a rule that allows people to purchase health care plans that do not comply with all of the regulations set by the Affordable Care Act. While these plans are typically less expensive than plans sold in the individual market exchanges, they provide less coverage and fewer benefits. Under the Trump administration’s new rule, these plans can now last as long as 12 months — instead of the Obama-era 90-day limit — and be renewed for two additional years. Critics say these changes are part of another swipe at the Affordable Care Act. 

For more information, WATCH → https://khn.org/news/watch-what-you-should-know-about-the-new-rule-on-short-term-health-plans/?utm_campaign=KHN%20-%20Weekly%20Edition&utm_source=hs_email&utm_medium=email&utm_content=64960239&_hsenc=p2ANqtz–FZPiSKDT38eqKEcfKVA_JcsKxxpjDbDPFAq3MFZDzMNmmZjgJuVOPrQnZIxsrcX3sGrxwB5n6nWCKyEyeZ3ggAtbWPQ&_hsmi=64960239 

 

What You Can Do

TAKE ACTION: It is very important that our elected officials hear from us to protect federal HIV funding for HIV prevention and care. Speak truth to power by sharing your personal stories with your elected officials. It is vitally important to meet 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:

Delaware 8/11/2018
Rhode Island 8/12/2018
Vermont 8/14/2018
Massachusetts 8/15/2018
Wyoming 8/21/2018
New Hampshire 8/29/2018

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:

Hawaii 8/11/2018
Minnesota 8/14/2018
Wisconsin 8/14/2018
Connecticut 8/14/2018
Vermont 8/14/2018
Alaska 8/21/2018
Wyoming 8/21/2018
Arizona 8/28/2018
Florida 8/28/2018

For more information, VISIT→ http://www.ncsl.org/research/elections-and-campaigns/2018-state-primary-election-dates.aspx

 

What NMAC is Doing About It

  • NMAC remains vigilant in its advocacy to protect FY19 government funding and the existence of the social safety net.
  • NMAC releaseda Biomedical HIV Prevention “Blueprint” entitled Expanding Access to Biomedical HIV Prevention: Tailoring Approaches for Effectively Serving Communities of Color, a new report that establishes strategies to effectively use techniques such as Pre-Exposure Prophylaxis (PrEP) and Treatment as Prevention (TasP) to end the HIV epidemic in communities of color. The full report can be found by visiting nmac.org/blueprint.

Important Happenings in HIV/Health Policy

Important Happenings in
HIV/Health Policy

Week Ending: July 24, 2018
By: Matthew Rose & Sable K. Nelson

Opportunities for Input: Let Your Voice be Heard

Leading up to the US Conference on AIDS (USCA) in September, Act Now: End AIDS will solicit community input to inform the creation of a federal plan to end the epidemic. However it is important that we hear from affected communities from around the country in four primary ways:

  1. An online recommendation form at

https://survey.co1.qualtrics.com/jfe/form/SV_eWde8Hsj4p0L4UJ . SUBMISSIONS DUE BY AUGUST 10.

  1. Online webinars covering key recommendation topics ( prevention and testing, care and treatment, structural interventions, research, viral hepatitis, sexually transmitted infections, opioids and the overdose epidemic, data and metrics)
  2. Web-based meetings and conference calls led by and soliciting input from specific affected communities
  1. An in person pre-USCA meeting to discuss an early draft of the plan to be held on September 5 in Orlando, FL

We invite you to use any and all of these options to provide recommendations for the plan. The online form may be used for as many recommendations as you want to submit. While individuals are absolutely invited to submit online recommendation forms, we also encourage submissions from groups.

Pharmacy Gag Rule

Last Wednesday, the Senate passed the pharmacy gag rule. What is the pharmacy gag rule? It prevent pharmacists from telling patients that they could save money on their prescriptions. The bill, S. 2554, sponsored by Sen. Susan Collins (R-ME), would outlaw pharmacy benefit management (PBM) contracts that restrict pharmacists from telling consumers if they could save money by buying a drug directly or using assistance programs rather than using their insurance co-pay. Next steps are for the bill to be put on the calendar for a vote before the full U.S. Senate. For more information, READ → https://www.washingtontimes.com/news/2018/jul/25/susan-collins-writes-bill-to-ban-gag-clauses-at-ph/

Check Out the Kaiser Health News’ Podcast: ‘What The Health?’
In the most recent episode of Kaiser Health News’ “What the Health?”, Julie Rovner of Kaiser Health News, Anna Edney of Bloomberg News, Alice Ollstein of Talking Points Memo, and Kimberly Leonard of the Washington Examiner talk about the new push on health legislation by Republicans in the House, as well as developments on Medicaid work requirements, drug prices, and the fate of children separated from their parents at the U.S.-Mexican border. Plus, for extra credit, the panelists offer their favorite health stories of the week. For more information, LISTEN → https://khn.org/news/podcast-khns-what-the-health-congress-and-health-care-again/?utm_campaign=KHN%20-%20Weekly%20Edition&utm_source=hs_email&utm_medium=email&utm_content=64787216&_hsenc=p2ANqtz-9X6ycxHo_weKq7UQE4wOfsTu65loYZIBnZtVtoaJtBYVhwt5SSnSpUH-fmCmB9g5MuriDBLsZrNQTndEizDfeUZmWYkA&_hsmi=64787216

What You Can Do

TAKE ACTION: It is very important that our elected officials hear from us to protect federal HIV funding for HIV prevention and care. Speak truth to power by sharing your personal stories with your elected officials. It is vitally important to meet with 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:

Connecticut 8/9/2018
Delaware 8/11/2018
Rhode Island 8/12/2018
Vermont 8/14/2018
Massachusetts 8/15/2018
Wyoming 8/21/2018
New Hampshire 8/29/2018

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:

Tennessee 8/2/2018
Michigan 8/7/2018
Washington 8/7/2018
Missouri 8/7/2018
Kansas 8/7/2018
Hawaii 8/11/2018
Minnesota 8/14/2018
Wisconsin 8/14/2018
Connecticut 8/14/2018
Vermont 8/14/2018
Alaska 8/21/2018
Wyoming 8/21/2018
Arizona 8/28/2018
Florida 8/28/2018

For more information, VISIT→ http://www.ncsl.org/research/elections-and-campaigns/2018-state-primary-election-dates.aspx

What NMAC is Doing About It

NMAC remains vigilant in its advocacy to protect FY19 government funding and the existence of the social safety net.

Important Happenings in HIV/Health Policy

Important Happenings in
HIV/Health Policy

Week Ending: July 20, 2018
By: Matthew Rose & Sable K. Nelson

NOTE: The 22nd International AIDS Conference (AIDS 2018) is occurring in Amsterdam, Netherlands from July 23-27, 2018. For more information, visit: https://www.aids2018.org/

 

The Kaiser Family Foundation Updates its Global HIV/AIDS Timeline

Now updated through 2018, the Global HIV/AIDS Timeline is designed to serve as an ongoing reference tool for the many political, scientific, cultural, and community developments that have occurred over the history of the epidemic. For more information, READ https://www.kff.org/global-health-policy/timeline/global-hivaids-timeline/?utm_campaign=KFF-2018-The-Latest&utm_source=hs_email&utm_medium=email&utm_content=64613778&_hsenc=p2ANqtz-8vtTYa61sQsqAwZFRO3ynj2PwwVdgfMhp9Os0eIlijTmRdj21Fzt67oniq9XkjTv7kAao1hX_zUpkLfkA0qBY3xHLVNw&_hsmi=64613778. You can also take the updated HIV/AIDS quiz to test your knowledge of the global epidemic.

 

amfAR Releases New Reports on Long-Acting HIV Treatment and Prevention 

Last week, amfAR and the O’Neill Institute for National and Global Health Law hosted a briefing at Georgetown Law in connection with the release of four new amfAR reports, “Long-Acting HIV Treatment and Prevention Are Coming: Preparing for Potential Game Changers.” The purpose of these documents is to highlight the education and policy dialogues needed to prepare for innovative long-acting products under development to treat and prevent HIV infection.  For more information about the briefing, please read the following blog post on the O’Neill Institute blog: http://oneill.law.georgetown.edu/amfar-and-the-oneill-institute-host-briefing-on-long-acting-hiv-treatment-and-prevention/. The reports may be accessed at http://www.amfar.org/Long-Acting-ARV/.

 

Provisions of Affordable Care Act Under Attack

It is likely that the U.S. House of Representatives will consider three bills related to health care next week. One bill will permanently repeal the Obamacare tax on medical devices. This bill passed the House on Tuesday, July 24.For more information, READ https://www.wsj.com/articles/house-votes-to-repeal-tax-on-medical-devices-1532467519. According to House Majority Leader Kevin McCarthy (R-CA), the House will also vote on bills to expand health savings accounts (HSAs) and put a two-year delay on an Affordable Care Act’s insurance tax.

 

What You Can Do

TAKE ACTION: It is very important that our elected officials hear from us to protect federal HIV funding for HIV prevention and care. Speak truth to power by sharing your personal stories with your elected officials. It is vitally important to meet 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!

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!!!

For more information, VISIT→ http://www.ncsl.org/research/elections-and-campaigns/2018-state-primary-election-dates.aspx

Opportunities for Input: Let Your Voice be Heard

Leading up to the US Conference on AIDS (USCA) in September, Act Now: End AIDS will solicit input to inform the creation of a federal plan to end the epidemic. It is vital that we hear from affected communities from around the country in four primary ways:

  1. An online recommendation form at

https://survey.co1.qualtrics.com/jfe/form/SV_eWde8Hsj4p0L4UJ . SUBMISSIONS DUE BY AUGUST 10.

  1. Online webinars covering key recommendation topics ( prevention and testing, care and treatment, structural interventions, research, viral hepatitis, sexually transmitted infections, opioids and the overdose epidemic, data and metrics)
  2. Web-based meetings and conference calls led by and soliciting input from specific

affected communities

  1. An in person pre-USCA meeting to discuss an early draft of the plan to be held on September 5 in Orlando, FL

We invite you to use any and all of these options to provide recommendations for the plan. The online form may be used for as many recommendations as you want to submit. While individuals are absolutely invited to submit online recommendation forms, we also encourage submissions from groups.

 

What NMAC is Doing About It

  • NMAC remains vigilant in its advocacy to protect FY19 government funding and the existence of the social safety net.
  • NMAC releaseda Biomedical HIV Prevention “Blueprint” entitled Expanding Access to Biomedical HIV Prevention: Tailoring Approaches for Effectively Serving Communities of Color, a new report that establishes strategies to effectively use techniques such as Pre-Exposure Prophylaxis (PrEP) and Treatment as Prevention (TasP) to end the HIV epidemic in communities of color. The full report can be found by visiting nmac.org/blueprint.

Meet the 2019 Youth Initiative Scholars!

N.M.A.C. Youth InitiativeOn behalf of NMAC and our funders – ViiV Healthcare, and collaborative partner Advocates for Youth, we are pleased to announce the 2019 Youth Initiative Scholars! This program empowers young leaders in the HIV community with leadership skills, as well as improves HIV and public health literacy to bring back and apply within their communities and organizations.

The Youth Initiative, now in its eighth year, brings together the next generation of leaders ages 18–25 (known as Youth Scholars) to participate in a seven-month, comprehensive program to help end the HIV epidemic in the U.S. As part of this program, Youth Scholars will gain opportunities to develop leadership, increase their knowledge, and build confidence while integrating key youth-specific messaging in local, state and national HIV/AIDS programs and advocacy agendas.

The Youth Scholars will also attend the U.S. Conference on HIV/AIDS (USCHA), held online Oct. 19-21, 2020. During the conference, Youth Scholars will participate in sessions meant to advance their leadership skills, build confidence, and learn new ways to prioritize youth within HIV/AIDS programs and policies in their communities.

Congratulations to the following Scholars and Mentors for their acceptance into the 2019 Youth Initiative Program!

 

Meet the Youth Initiative Scholars

Mario Campos is a 25-year-old, Salvadoran with a bachelor’s degree in International Relationships and recently graduated from his second degree in International Business from Broward College – Florida.

From a young age, Mario has participated in public speaking and poetry events, and has won two public speaking competitions when representing his country. His excellent academic record helped him to obtain multiple scholarships for different international exchange programs including programs in Costa Rica, Panama, and the United States, where he completed a course in Harvard University in 2015. Also, he is actively engaged in activities from his church and community organizations such as the AFROOS Organization (Salvadoran Youth Organization for the Afro-descendant and LGBTQIA community) and he knows sign language.

In 2017, he was crowned as Miss Gay El Salvador and he developed different projects to empower the Salvadorian LGBTQIA community, raising a voice for this traditionally marginalized and excluded community. Also, he led a legislative initiative demanding fair treatment and equal employment opportunity for the LGBTQIA community in El Salvador. In 2019, he was selected by the US Department of Health to become a youth fellow at the national convention for HIV, and in 2020, the President of El Salvador awarded him the recognition of “Young Influencer El Salvador 2020”

Currently, he is an UN volunteer and one of the 10 young spokespersons for the “Ideas that Work” program promoted by the Senate of Argentina and the United Nations. Also, he delivers talks on youth empowerment and immigrant children, and he is writing a book on personal growth. He supports Florida Department of Health as a coordinator for HIV prevention and leadership groups and works as a counselor in the Clear and Life Coaching program focused in providing support to undocumented individuals newly diagnosed with HIV.

Jenadra Harvey hails from the state of Connecticut. While there, she obtained a Bachelor of Arts degree in Individualized: Urban Youth Development and Health (Minors in Psychology & Human Development + Family Studies) from the University of Connecticut. Her experiences at UCONN led her to attend Howard University and obtain a Master of Education in School Psychology and Counseling Services. Jenadra Harvey currently works as a School Psychologist in Maryland. In her practice, she hopes to create spaces to serve marginalized populations in inner cities by encouraging conversations around education and (physical, sexual, and mental) health. This field and the public service work that she engages in will permit Jenadra to bring about the assistance and change that is needed in inner cities across the nation.

 

JyLan Jones (no bio)

Kody Keckler (he/they) is a Research Associate at the Ruth M. Rothstein CORE Center. They started their career in HIV prevention research, spending the last three years implementing interventions to help young people access and adhere to PrEP. As of April, though, Kody has transitioned to COVID-19 projects to meet the need of the moment. Prior to their research work, Kody worked with the sexual assault services at Northwestern University, helping design information campaigns and compiling resources for an intake handbook. Kody graduated from Northwestern University in 2017 studying Communication and Gender & Sexuality Studies. Their professional interests include addressing health disparities among queer and trans youth and using queer theory as a lens to deconstruct systems of oppression.

Timmy R. Kimber is a 24-year-old native of Belzoni, MS and 2014 honors graduate of Humphreys County High School. He studied Communication and Theatre at Jackson State University. Timmy is a philanthropist and the CLEAR Coordinator for Us Helping Us, People Into Living, Inc. In his current role, he serves people living with HIV/AIDS and those that are at risk. Timmy has served on several state and national advisory boards including Mississippi Center for Justice. Whether he is serving on an advisory board or simply encouraging others with conversations that move them forward, Timmy is always seeking innovative and unconventional ways to advance the causes and missions of organizations committed to public health. He is a member of MADRAMA Performance Troupe at Jackson State University. But every super-hero has downtime, and when he’s not fighting the cause for others and himself, he’s reading, doing research, learning the ins and outs of politics, or his absolute favorite hobby, residential and commercial interior design. Timmy hails from a small town in the Mississippi Delta, yet wise. Whether it’s public health or interior design, Timmy’s passion is creating a space for people to live, laugh, and love. He is a member of Wasp Lake Missionary Baptist Church where Lisa R. Day serves as the pastor. His motto in life comes from Proverbs 18:16 which says, “A man’s gift makes room for him and brings him before great men!”

 

Rocky Kingsley (no bio)

 

Jordan McKinnon joins us as a program Scholar. Jordan recently graduated from DePauw University in Greencastle, Indiana. While at DePauw he majored in Neuropsychology with a minor in East Asian Religious Studies. He also was a member of Sigma Nu fraternity and a co-founder Queer People of Color (QPOC), an organization that gave queer students of color the space and opportunity to be heard in an otherwise cis-heteronormative world. Currently, Jordan volunteers at the Damien Center and is an Advocate for Planned Parenthood. And as a Scholar he looks forward to learning and engaging in constructive change with NMAC to better help his community.

 

Nwizu Ujuonu (no bi0)

Tyvion Roberts (no bi0)

 

 

 

Aron Thiim (he/him/his/él) is a social justice advocate and public health professional dedicated to improving health and fighting stigma. While completing his B.S. in Public & Community Health, he worked at a syringe exchange in Upstate NY providing syringe access and risk reduction services to people who use substances and led community education seminars about HIV/HCV and opioid overdose prevention. After graduation, he worked in Boston at Fenway Health coordinating behavioral science research studies among sexual and gender minority people living with HIV and substance use disorders. He is currently a Program Manager of HIV/STIs and Prevention at The Justice Resource Institute (JRI), where he oversees a clinical team in MetroWest Boston offering HIV/STI/HCV counseling, testing and treatment, PrEP and PEP. His outreach and volunteer experiences include working with individuals experiencing homelessness, people who are incarcerated, people at risk or living with HIV, and people who use substances. Aron plans to pursue a future clinical career in community-oriented primary care.

 

Lisa Watkins is a dedicated and active HIV/AIDS advocate and activist who currently resides in Memphis, TN. She lives for helping and guiding others to the best of her ability and she also stands to end stigma and improve prevention and awareness for multiple causes. She serves as a member of many Community Advisory Boards and acts as a spearhead member of The Paige (Project of Advancement In Gay’s Efforts) HIV/AIDS Decriminalization sector as well as other organizations highlighting issues related to you such as HIV, suicide, reproductive health and justice and LGBTQ+ health and rights. In the future, she plans to become a counselor for youth and young adults newly diagnosed with HIV. As a self-identified, positive black woman, Watkins dedicates her time and patience to working toward ending the epidemic and raising awareness for all as well as being one of the voices needed to lead and guide youth to be heard and seen while creating space for transitional leadership.

 

Meet the Youth Initiative Mentors

Farah Jeune is a multimedia Artist from Boston. She uses her creativity to help her peers, elders and ancestors feel empowered, represented and loved in colorful 2D mediums. As an art activist, she creates artwork to bring awareness to taboo issues impacting communities of color such as HIV and mental health. Ms. Jeune also is the creator, host and producer of a monthly television variety show entitled ‘ºFarenheight TV’ which celebrates people’s greatness through interviews, LIVE performances and more. Learn more by visiting www.FarenheightTV.com

 

Darriyhan Edmond is a young leader and person living with HIV since the age of 18. He is currently the founder and executive director of Project RED Paint, which is located in Atlanta, GA and serves as an organization providing support, empowerment, and encourage to enhance the lives of people of color living with HIV. Since his diagnosis Darriyhan has dedicated himself to the work and community. He is truly committed to the fight and hopes to see this epidemic end within his time.

Darriyhan has volunteered and worked with many organizations within the work. He has served as a youth mentor for youth within the Youth Initiative and recently worked with THRIVE SS of Atlanta as Linkage to Care Coordinator. After much time working he began his own organization to save more lives and became incorporated in 2018.

 

Marnina Miller is a Human Rights Activist. Her expertise revolves around HIV advocacy, queer community engagement, language justice, and body positivity. She fell in love with activism after joining Positive Organizing Project a movement that trains people living with HIV on how to become effective HIV activist. This out and proud, Black Queer young woman facilitates trainings on anti-stigmatizing language, effective leadership, sex positivity, and community organizing. At Positive Women’s Network-USA(PWN-USA) she currently serves on the Board of Directors. She is also a graduate of the PWN-USA’s Public Policy Fellowship. Marnina is a youth ambassador for Youth Across Borders where she spends time at Montañade Luz which is an orphanage for children living with HIV in Honduras. She is also the co-chair for the Texans Living with HIV Network, and a recipient of the Violet Award; which recognizes LGBTQ advocates in Houston. At NMAC she is the graduate of the Inaugural Building Young Leaders of Color (BYLOC) leadership training and a youth council facilitator for the Youth Initiative Program. Marnina is also a feature writer for the international online publication Life and Love with HIV where she is dismantling the stigma of women; developing, maintaining, and pursuing a healthy sex life one blog post at a time Marnina has been a board member of The Mahogany Project Inc. since 2020 where she is also a cohost of the In Living Colors Podcast.

Dannielle Blakely is a 26 year old transgender woman living with HIV. She was diagnosed with HIV in 2017. Since her diagnosis, she has become an advocate for those living with HIV in the Topeka, Kansas area.  Dannielle hopes to return to school to finish her Bachelor of Nursing and continue her education in order to become a Nurse Practitioner, specializing in Infectious Disease, specifically in HIV. She enjoys painting, video games, and playing with her dog in her free time.

 

Kyle Rodriguez (He/Him) is an international HIV advocate and an Hermano (brother) of La Unidad Latina, Lambda Upsilon Lambda, Fraternity Incorporated. He currently attends the University of Connecticut pursuing his Bachelor of Science in Allied Health Sciences with a Concentration in Public Health and Health Promotion and is anticipated to graduate in May 2021. Kyle is extraordinarily involved on campus, serving as a Residential Assistant (RA), Vice President of the Intercultural Greek Council, and the Chief of Staff to the Chapter President of his fraternity.

Kyle brings a wealth of knowledge working in the HIV prevention field on local, national, and international levels all before the age of 25. Locally, Kyle worked at A Place to Nourish your Health (APNH), serving the Greater New Haven community through HIV community outreach and intentional program planning. He also served as the youngest member of Connecticut’s Getting to Zero Commission where he gave evidence-based advice to end the HIV epidemic in Connecticut. He has helped strengthen healthcare delivery systems in rural Honduras and also volunteered at a Honduran HIV orphanage. Kyle is a proud alum of NMAC’s Youth Initiative Program and BYLOC Program and has been involved with NMAC since 2017.

 

Tapakorn (TA-puh-kawn) (they/them) is a non-binary, 1st-generation Thai-American currently residing in Los Angeles, CA. They currently work as an organizational consultant with CHE (Center for Health Empowerment) with a focus on client navigation. Computer science and all things tech became their passion growing up, along with what they studied in school and moved to San Francisco to do, but something was off. The hugely disproportionate divide between wealth and poverty in SF caused them to seek volunteer opportunities at local nonprofits until they started to fall in love with their weekend gig being an HIV Test Counselor at clubs more than, let’s say their “day job”. Eventually, noticing how disgruntled Tapakorn was from their career, Asian Pacific Islander Wellness Center (now known as San Francisco Community Health Center) offered them a position to start their PrEP program.

From there, Tapakorn has gone on to work at a few HIV-focused nonprofits specializing in client navigation, HIV Prevention, and program implementation, using their previous tech knowledge to modernize, optimize, and synergize today’s medical systems. During this time inside, you can find them cooking far too much food, playing video games for a renewed sense of adventure, and dying their hair whatever color happen to be on sale that month.