“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.

Being an HIV 50+ Scholar at USCA 2018

By Christine Kapi’ioho

Christine Kapi'ioho This was my first time attending USCA and I was absolutely honored and privileged to attend. Coming all the way from Maui, Hawaii and being part Native-Hawaiian and a woman, I learned that there was now a designation for our race under the Constituent Advisory Panels (CAPs) for 2018. We, as Hawaiians are no longer lumped into another category but instead have our own panel which is amazing. Now, there are five CAPs; African American, American Indian and Alaskan Native, Asian, Latinx, and Native Hawaiian and Pacific Islander. I was able to attend the breakout session on the first day, entitled: Ka Hikina o Ka La – The Dawning of a New Day and luckily it did not conflict with any of my HIV50+ Scholar sessions that were recommended to attend. The session was so informative and was presented by my colleagues throughout the State of Hawaii. I felt that as a Scholar being at the conference was a chance to show that Hawaiians are still around on this planet, that our voices should be heard, and that our Native Hawaiian HIV-positive individuals should be recognized. I thought of my clients whom I serve where I work and how it would be so special to have other Hawaiians attend in 2019. I dreamed of how beneficial it would be to them mentally and to show them they are not alone and that other minorities are not isolating themselves or being ashamed of their status.

I am inspired by all the knowledge and information at the conference. Sometimes I was a little overwhelmed by it all but at the same time going, the fire inside being re-kindled and ignited to a brighter flame so that I can continue the work that I do as Director of Client Services. I come back to my agency, ready to start a stand-alone 50+ HIV positive group to serve those aging with HIV and address their specific, “aging” needs. I also come back to the office ready to do what it takes to bring other Native Hawaiian peoples to the conference in 2019. Thank you NMAC and USCA for allowing me the chance to attend USCA. I plan to bring others in 2019.

With Aloha,
Christine Kapi’ioho

Important Happenings in HIV/Health Policy

Week Ending: Oct. 5, 2018
By: Matthew Rose & Sable K. Nelson

NOTE: The U.S. House of Representatives is out on recess until Nov. 13 (after the 2018 mid-term elections). The U.S. Senate is still in session this week.

Positive Women’s Network Hosts Webinar on Public Charge Impact on PLWH

On October 03, 2018 the Positive Women’s Network USA hosted a webinar entitled “Public Charge: What Does It Mean for the HIV Community?” Throughout history, people have moved to make better lives for themselves and their children. Trump’s “public charge” rule change, will reduce our neighbors, who want the same things for their families that we all want–health, safety, dignity, economic security–to a calculation of what is in their pockets when they arrive and the cost of any pre-existing health conditions they may have. The invaluable contributions of immigrants to their communities, families, and our nation will be ignored and discarded. To view the slide deck, click here: https://www.pwn-usa.org/wp-content/uploads/2018/10/Webinar-Slides-Public-Charge-and-HIV.pdf

 

Changes In SAMHSA Leadership

The Substance Abuse and Mental Health Services Administration (SAMHSA) announced that the director of its mental health center, Paolo del Vecchio, is being reassigned. Paolo del Vecchio, who has led the agency’s mental health center since 2012, has been tapped to run its Office of Management, Technology, and Operations. HIV is inextricably linked to mental health. Moreover, SAMHSA plays an important role in HIV prevention and treatment in communities of color. SAMHSA received $116.0 m for its Minority AIDS Initiative programming in FY18. The program has been flat-funded and will receive the same amount in FY19. For more information, READ: https://www.politico.com/newsletters/morning-ehealth/2018/10/05/search-for-vha-head-gets-serious-363423 (please see: LEADERSHIP SHUFFLE AT SAMHSA)

 

Podcast: KHN’s ‘What The Health?’ Some Things Old, Some Things New

In this episode of KHN’s “What the Health?” Julie Rovner of Kaiser Health News, Rebecca Adams of CQ Roll Call, Margot Sanger-Katz of The New York Times and Kimberly Leonard of the Washington Examiner discuss final action on bills in Congress to address the opioid epidemic and fund federal health agencies. They also look at new efforts by the Food and Drug Administration to crack down on teen nicotine use. For more information, LISTEN: https://khn.org/news/podcast-khns-what-the-health-some-things-old-some-things-new/

 

U.S. SENATOR TAMMY BALDWIN FILES DISCHARGE PETITION TO FORCE SENATE VOTE ON OVERTURNING TRUMP ADMINISTRATION’S EXPANSION OF JUNK INSURANCE PLANS

On Tuesday, U.S. Senator Tammy Baldwin filed a discharge petition that will force a Senate vote on her resolution to overturn the Trump Administration’s expansion of junk insurance plans that can deny coverage to people with pre-existing conditions and don’t have to provide essential health services like prescription drugs, emergency room visits and maternity care.
Senator Baldwin’s effort is supported by more than 20 of the nation’s top health care organizations including the American Cancer Society Cancer Action Network (ACS CAN), American Heart Association, Planned Parenthood Federation of America, NARAL Pro-Choice America, the Cystic Fibrosis Foundation, the Leukemia & Lymphoma Society, WomenHeart, National Women’s Law Center, American College of Obstetricians and Gynecologists, American Academy of Family Physicians, American Academy of Pediatrics, American College of Physicians, American Osteopathic Association, American Psychiatric Association, Residential Eating Disorders Consortium, Protect Our Care, Families USA, AIDS United, Association for Community Affiliated Plans, Mental Health America and the Little Lobbyists.

The signed discharge petition is available here.

 

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 general mid-term election happening this year:

General Election Voter
Registration Deadline

North Carolina

10/12/2018

Idaho

10/12/2018

New York

10/12/2018

Oklahoma

10/12/2018

Delaware

10/13/2018

Virginia

10/15/2018

West Virginia

10/16/2018

Oregon

10/16/2018

New Jersey

10/16/2018

Maine

10/16/2018

District of Columbia

10/16/2018

Maryland

10/16/2018

Kansas

10/16/2018

Minnesota

10/16/2018

Wisconsin

10/17/2018

Massachusetts

10/17/2018

Nebraska

10/19/2018

Montana

10/19/2018

Alabama

10/22/2018

South Dakota

10/22/2018

California

10/22/2018

Wyoming

10/22/2018

New Hampshire

10/23/2018

Iowa

10/27/2018

Colorado

10/29/2018

Connecticut

10/30/2018

Vermont

11/6/2018

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

Finally, PARTICIPATE IN THE GENERAL ELECTION(S) in your state: 11/6/18

 

What NMAC is Doing About It

  • NMAC working to supporting HIV-positive members of the military in their fight about the administration separation.
  • NMAC is working with coalition partners on working on the drafting the next round of ending the epidemic.
  • NMAC will continue to support getting out the vote efforts up to November 6 to express the importance of voting and what it can mean for the election.

 Have a policy question? E-mail us! We would like to help if we can. Mrose@nmac.org or SNelson@nmac.org

Important Happenings in HIV/Health Policy

Week Ending: Sept. 28, 2018
By: Matthew Rose & Sable K. Nelson

Threat To The ACA Turns Up The Heat On Attorney General Races

According to recent reporting by Kaiser Health News, as Republican and Democratic attorneys general square off on a Texas case that threatens to dismantle consumer protections in the federal health law, campaigns across the country for states’ highest legal officer get hotter. For more information, READ: https://khn.org/news/threat-to-the-aca-turns-up-the-heat-on-attorney-general-races/

 

CMS Administrator Verma Stresses Work Requirements

At the 2018 Medicaid Managed Care Summit in Washington, Seema Verma, the Centers for Medicare & Medicaid Services Administrator responded to the opposition to Medicaid work requirements by stating: “I have heard the criticism and felt the resistance, but I reject the premise and here is why: It is not compassionate to trap people on government programs or create greater dependency on public assistance as we expand programs like Medicaid.” Over 4,300 Medicaid expansion enrollees in Arkansas are losing coverage because they did not comply with the state’s work requirement mandate. According to recent reports, more than 1,000 Arkansas Works enrollees have found jobs since the program began in July. Also in her comments, Administrator Verma affirmed her support for block granting Medicaid, saying the only way the federal government can end its micromanagement of states is to move away from entitlement programs. For more information, READ: http://www.modernhealthcare.com/article/20180927/NEWS/180929907

 

A Critical Look at the Decision of the NIH in Funding New Prevention Research

The new IRMA report “Whose Choice is it Anyway?” takes a look at the NIH’s decision to no longer fund prevention technologies that are used at time of sex and are topical. The NIH conducted an input process last year that concluded with a release of new HIV prevention research priorities that favor long acting, systemic formulations (like vaccines, implants and injectables) and negate the need for short acting, user-controlled, non-systemic approaches (like vaginal and rectal microbicides). IRMA was curious about the input that was collected—did most scientists, advocates, and other stakeholders indeed prioritize long acting, systemic formulations, showing little to no interest in other approaches like microbicides?

You can check out the slides and listen to the recording here.

Please share the report widely, and reach out directly to the folks in power at the NIH and the HPTN. They STILL HAVE THE OPPORTUNITY TO LISTEN TO US. They still have the opportunity to walk the talk, to stand by their stated commitment to listen to communities and to work with us to create HIV prevention options WE want.

 

Buyer Beware: New Cheaper Insurance Policies May Have Big Coverage Gaps

If you’re looking for cheaper health insurance, a whole host of new options will hit the market starting Tuesday. But buyer beware! If you get sick, the new plans – known as short-term, limited duration insurance — may not pay for the medical care you need. Read more:
https://www.npr.org/sections/health-shots/2018/10/01/652141154/buyer-beware-new-cheaper-insurance-policies-may-have-big-coverage-gaps

 

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 general mid-term election happening this year:

General Election Voter
Registration Deadline

Utah

10/7/2018

Alaska

10/7/2018

Rhode Island

10/7/2018

Washington

10/8/2018

Texas

10/9/2018

Illinois

10/9/2018

Indiana

10/9/2018

Ohio

10/9/2018

Pennsylvania

10/9/2018

Arkansas

10/9/2018

Georgia

10/9/2018

Kentucky

10/9/2018

Mississippi

10/9/2018

New Mexico

10/9/2018

South Carolina

10/9/2018

Nevada

10/9/2018

Tennessee

10/9/2018

Michigan

10/9/2018

Hawaii

10/9/2018

Arizona

10/9/2018

Florida

10/9/2018

Missouri

10/10/2018

North Carolina

10/12/2018

Idaho

10/12/2018

New York

10/12/2018

Oklahoma

10/12/2018

Delaware

10/13/2018

Virginia

10/15/2018

West Virginia

10/16/2018

Oregon

10/16/2018

New Jersey

10/16/2018

Maine

10/16/2018

District of Columbia

10/16/2018

Maryland

10/16/2018

Kansas

10/16/2018

Minnesota

10/16/2018

Wisconsin

10/17/2018

Massachusetts

10/17/2018

Nebraska

10/19/2018

Montana

10/19/2018

Alabama

10/22/2018

South Dakota

10/22/2018

California

10/22/2018

Wyoming

10/22/2018

New Hampshire

10/23/2018

Iowa

10/27/2018

Colorado

10/29/2018

Connecticut

10/30/2018

Vermont

11/6/2018

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

Finally, PARTICIPATE IN THE GENERAL ELECTION(S) in your state: 11/6/18

 

What NMAC is Doing About It

  • NMAC is working to provide information to federal agencies as they work on the 2020 budgets.NMAC remains vigilant in its advocacy to protect FY19 government funding and the existence of the social safety net.
  • NMAC released a 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 www.nmac.org/blueprint.

 Have a policy question? E-mail us! We would like to help if we can. Mrose@nmac.org or SNelson@nmac.org

Important Happenings in HIV/Health Policy

Week Ending: Sept. 21, 2018
By: Matthew Rose & Sable K. Nelson

Two House Democrats Call to Subpoena Trump Administration Regarding Medicaid Work Requirements

Two members of the U.S. House of Representatives, Reps. Elijah Cummings (D-MD) and Raja Krishnamoorthi (D-IL), sent a letter to House Oversight Committee Chairman Rep. Trey Gowdy, R-S.C., on Thursday to request a subpoena to compel the Trump administration to turn over key documents relating to their push to implement work requirements for Medicaid. The goal is for the Committee on Oversight and Government Reform Leadership to compel the White House to share more information on the possible effects of its move to tie Medicaid eligibility to employment. Reps. Cummings (D-MD) and Krishnamoorthi (D-IL) assert that the Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid (CMS) are withholding documents related to Medicaid work requirements and what it could mean for beneficiaries. Reps. Cummings (D-MD) and Krishnamoorthi (D-IL) inquiry came a week after more than 4,000 Arkansas residents lost Medicaid coverage due to work rules in the state. For more information, READ → https://www.washingtonexaminer.com/policy/healthcare/democrats-seek-to-subpoena-documents-on-medicaid-work-rulesl

 

Proposed Immigration Rule Changes Likely to Adversely Impact PLWH

The Trump administration released a proposed rule which seeks to empower the Administration to effectively impose a merit-based immigration system without an act of Congress. The proposed rule would permit the rejection of immigrants from the US if they have too little income and/or education. The intention is to impose harsher rules for determining when immigrants are likely to be considered a “public charge.” According to the U.S. Citizenship and Immigration Services, “‘public charge’ means an individual who is likely to become primarily dependent on the government for subsistence, as demonstrated by either the receipt of public cash assistance for income maintenance or institutionalization for long-term care at government expense” (https://www.uscis.gov/greencard/public-charge). This legal determination can block an individual’s path to permanent residency (i.e., obtaining a green card). The proposed public charge test does not apply to persons seeking asylum, refugees, Violence Against Women Act (VAWA) applicants, etc. According to a reporting by The Body, However, the proposed changes to the public charge rule “…would essentially operate as a de facto ban on HIV-positive individuals seeking permanent residence in the U.S. Immigrants with disabilities or pre-existing medical conditions such as HIV/AIDS would be required to show proof of unsubsidized health insurance — i.e., no Medicaid, ADAP, or Obamacare, thus creating a back door to a reinstatement of the HIV immigration ban.” (http://www.thebody.com/content/81028/public-charge-rule-devastating-hiv-immigrants.html) For more information, READ → https://abcnews.go.com/Health/things-trumps-public-charge-immigration-proposal/story?id=58064875

 

Podcast: KHN’s ‘What The Health?’ Health On The Hill

n this episode of KHN’s “What the Health?” Julie Rovner of Kaiser Health News, Rebecca Adams of CQ Roll Call, Margot Sanger-Katz of The New York Times, and Joanne Kenen of Politico talk about a spate of health-related legislative action on Capitol Hill, including Senate passage of a bill to address the opioid epidemic. Plus, for extra credit, the panelists recommend their favorite health policy stories of the week. For more information, LISTEN → https://khn.org/news/podcast-khn-what-the-health-september-20-2018-health-on-the-hill/?utm_campaign=KHN%20-%20Weekly%20Edition&utm_source=hs_email&utm_medium=email&utm_content=66112809&_hsenc=p2ANqtz-9OFJGo63PgMvJLHAgsxhXmLHSHPw-ido84UeTH8-9sN-jbMYXe3N176G684G_BEwJvxpC–5_cQ8qlVZJy4J6sohESEA&_hsmi=66112809

 

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 general mid-term election happening this year:

General Election Voter
Registration Deadline

Utah

10/7/2018

Alaska

10/7/2018

Rhode Island

10/7/2018

Washington

10/8/2018

Texas

10/9/2018

Illinois

10/9/2018

Indiana

10/9/2018

Ohio

10/9/2018

Pennsylvania

10/9/2018

Arkansas

10/9/2018

Georgia

10/9/2018

Kentucky

10/9/2018

Mississippi

10/9/2018

New Mexico

10/9/2018

South Carolina

10/9/2018

Nevada

10/9/2018

Tennessee

10/9/2018

Michigan

10/9/2018

Hawaii

10/9/2018

Arizona

10/9/2018

Florida

10/9/2018

Missouri

10/10/2018

North Carolina

10/12/2018

Idaho

10/12/2018

New York

10/12/2018

Oklahoma

10/12/2018

Delaware

10/13/2018

Virginia

10/15/2018

West Virginia

10/16/2018

Oregon

10/16/2018

New Jersey

10/16/2018

Maine

10/16/2018

District of Columbia

10/16/2018

Maryland

10/16/2018

Kansas

10/16/2018

Minnesota

10/16/2018

Wisconsin

10/17/2018

Massachusetts

10/17/2018

Nebraska

10/19/2018

Montana

10/19/2018

Alabama

10/22/2018

South Dakota

10/22/2018

California

10/22/2018

Wyoming

10/22/2018

New Hampshire

10/23/2018

Iowa

10/27/2018

Colorado

10/29/2018

Connecticut

10/30/2018

Vermont

11/6/2018

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

Finally, PARTICIPATE IN THE GENERAL ELECTION(S) in your state: 11/6/18

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 is working to provide information to federal agencies as they work on the 2020 budgets.
  • NMAC is working in coalition to respond to the new rule on public charge issued by the administration.
  • NMAC continues to engage with coalitions to push back on the implication of work requirements on state Medicaid programs.
  • NMAC continues to do work on protecting HIV-positive service members from the new DoD separation policy.

 Have a policy question? E-mail us! We would like to help if we can. Mrose@nmac.org or SNelson@nmac.org

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.

Important Happenings in HIV/Health Policy

Week Ending: Sept. 14, 2018
By: Matthew Rose & Sable K. Nelson

Conference Committees Agrees on FY19 Health and Human Services Spending bill; Proposed HIV Cuts Fail

A bipartisan group of Appropriators have finished work on a package covering Defense and Labor-HHS-Education appropriations, along the way rejecting several policy measures. The Labor-HHS-Education bill (H.R. 6157) would provide nearly $178.1 billion in discretionary funding, a $1 billion increase over fiscal 2018. The Department of Health and Human Services (HHS) would receive $90.5 billion, a $2.3 billion increase over fiscal 2018. Specifically, as it related to domestic HIV programs, Congress’ funding bill rejected all of the cuts proposed by the Trump Administration. The President proposed to cut funding for HIV prevention, viral hepatitis prevention, and STD prevention at the CDC, as well as eliminate the Ryan White AIDS Education and Training Centers, Ryan White Special Projects of National Significance, the HHS Secretary’s Minority AIDS Initiative Fund, and Minority AIDS Initiative funding at SAMHSA. Now, the bill must be considered from the full House. It passed the Senate on Tuesday afternoon in a vote of 93-7. For more information, READ: https://www.axios.com/senate-passes-health-human-services-spending-bill-bba71d58-f5fb-42eb-abdc-51bc36994c76.html

Court Rules Case Challenging Defense Department’s Discriminatory HIV Policies to Proceed

The U.S. District Court for the Eastern District of Virginia denied the government’s motion to dismiss. Moreover, the plaintiffs’ motion to halt implementation of a new Department of Defense policy that likely would have resulted in the discharge of service members living with HIV was also denied because the Pentagon modified the policy after the plaintiffs filed the motion. Earlier this year, Lambda Legal and OutServe-SLDN filed two cases in the U.S. District Court for the Eastern District of Virginia against the Defense Department. The cases are entitled Harrison v. Mattis and Voe v. Mattis. The Harrison case was filed on behalf of Sgt. Nick Harrison, a veteran of two overseas combat zones who was denied a position in the Judge Advocate General (JAG) Corps because current Pentagon policy considers service members living with HIV non-deployable and will not allow them to enlist or to be appointed as officers. The Voe case, filed on behalf of a sergeant in the D.C. Army National Guard who was denied the opportunity to serve as an officer and faces possible discharge from the United States armed services because he is living with HIV. These cases challenge the military’s discriminatory policies governing the enlistment, deployment, and promotion of service members living with HIV. For more information, READ: http://www.thebody.com/content/81327/court-rules-case-challenging-defense-departments-d.html

NASTAD Releases Medicaid 1115 Waivers Fact Sheets and 
Updated Interactive Map

NASTAD released two new fact sheets: Medicaid 1115 Waivers: Considerations for HIV and Hepatitis Programs and Medicaid 1115 Waivers: Exemptions for People Living with HIV and Hepatitis, as well as an updated version of its Medicaid Waiver Map. These new NASTAD resources are designed to help HIV and hepatitis stakeholders understand the shifting Medicaid landscape, help clients navigate these changes, and engage state-level decision makers to inform policies that protect people living with HIV and hepatitis from changes that can jeopardize access to affordable coverage and care. Several states are seeking “waivers” that roll back Medicaid protections and impose burdensome eligibility requirements such as work requirements and monthly premiums. Medicaid provides health coverage to millions of Americans, including eligible low-income adults, children, pregnant women, elderly adults, and people with disabilities. Medicaid is administered by states, according to federal requirements. The program is funded jointly by states and the federal government. The federal agency that administers the Medicaid Program is the Centers for Medicare & Medicaid Services (CMS). Some Medicaid waivers have already been approved by CMS. It is likely that more approvals will occur in the future.

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 general mid-term election happening this year:

General Election Voter
Registration Deadline

Utah

10/7/2018

Alaska

10/7/2018

Rhode Island

10/7/2018

Washington

10/8/2018

Texas

10/9/2018

Illinois

10/9/2018

Indiana

10/9/2018

Ohio

10/9/2018

Pennsylvania

10/9/2018

Arkansas

10/9/2018

Georgia

10/9/2018

Kentucky

10/9/2018

Mississippi

10/9/2018

New Mexico

10/9/2018

South Carolina

10/9/2018

Nevada

10/9/2018

Tennessee

10/9/2018

Michigan

10/9/2018

Hawaii

10/9/2018

Arizona

10/9/2018

Florida

10/9/2018

Missouri

10/10/2018

North Carolina

10/12/2018

Idaho

10/12/2018

New York

10/12/2018

Oklahoma

10/12/2018

Delaware

10/13/2018

Virginia

10/15/2018

West Virginia

10/16/2018

Oregon

10/16/2018

New Jersey

10/16/2018

Maine

10/16/2018

District of Columbia

10/16/2018

Maryland

10/16/2018

Kansas

10/16/2018

Minnesota

10/16/2018

Wisconsin

10/17/2018

Massachusetts

10/17/2018

Nebraska

10/19/2018

Montana

10/19/2018

Alabama

10/22/2018

South Dakota

10/22/2018

California

10/22/2018

Wyoming

10/22/2018

New Hampshire

10/23/2018

Iowa

10/27/2018

Colorado

10/29/2018

Connecticut

10/30/2018

Vermont

11/6/2018

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

Finally, PARTICIPATE IN THE GENERAL ELECTION(S) in your state: 11/6/18

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 is working in coalition with Outserve-SLDN, Lambda Legal, The SERO Project, and HRC to push back on the congressional level to protect HIV positive Service Members.
  • NMAC remains vigilant in its advocacy to protect FY19 government funding and the existence of the social safety net.
  • NMAC released a 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 x`of color. The full report can be found by visiting www.nmac.org/blueprint

 Have a policy question? E-mail us! We would like to help if we can. Mrose@nmac.org or SNelson@nmac.org

Important Happenings in HIV/Health Policy

Week Ending: August 17, 2018
By: Matthew Rose & Sable K. Nelson

NOTE: The Senate returned from its scheduled recess on Wednesday, August 15.The House remains in recess until September 4.

ViiV Healthcare reports positive 48-week results for first pivotal, phase III study for novel, long-acting, injectable HIV-treatment regimen

The Antiretroviral Therapy as Long-Acting Suppression (ATLAS) study meets primary endpoint, showing similar efficacy of a once-a-month, investigational, injectable two-drug regimen of cabotegravir and rilpivirine compared to a standard of care, daily, oral three-drug regimen. The study showed long-acting cabotegravir and rilpivirine, injected once a month, had similar efficacy to a standard of care, daily, oral three-drug regimen at Week 48. Full results from the study will be presented at an upcoming scientific meeting. For more information, READ: www.natap.org

Podcast: KHN’s ‘What The Health?’ See You In Court!


In this episode of Kaiser Health Network’s (KHN) “What the Health?” Julie Rovner of Kaiser Health News, Alice Ollstein of Talking Points Memo, Margot Sanger-Katz of The New York Times and Kimberly Leonard of the Washington Examiner talk about a spate of lawsuits involving the Affordable Care Act, as well as the latest in state and federal efforts regarding the Medicaid program for the poor. For more information, LISTEN  https://khn.org/news/podcast-khns-what-the-health-see-you-in-court/?utm_campaign=KHN%20-%20Weekly%20Edition&utm_source=hs_email&utm_medium=email&utm_content=65278495&_hsenc=p2ANqtz-_OxJYvxVjxXbZgn1vzU1V-nZIak7GEc1wgtvYj0o2IWhDQ2-CoSu_mpxxLL7ljKH3O5Y4JPrsy-nEJ7W-XpwSQW2ORcA&_hsmi=65278495

Azar Meets With Specialty and Patient Groups about Drug Pricing

On Wednesday, U.S. Department of Health & Human Services Secretary Alex Azar met with representatives of specialty-physician and patient groups to discuss the Trump Administration’s efforts to offer new tools for Medicare Advantage plans to negotiate lower drug prices for patients. The groups included the American Academy of Ophthalmology, the American Cancer Society’s Cancer Action Network, the American College of Rheumatology, the American Society of Clinical Oncologists, and Patients for Affordable Drugs. Both Secretary Azar and the organizational representatives expressed appreciation for the opportunity to share their views with each other on the announcement that Medicare Advantage plans will be able to use step therapy or prior authorization to negotiate lower drug prices for patients.
https://www.einnews.com/pr_news/458876035/hhs-secretary-azar-meets-with-specialty-and-patient-groups-regarding-drug-pricing

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:

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:

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 released a 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 x`of color. The full report can be found by visiting www.nmac.org/blueprint

 

Important Happenings in HIV/Health Policy

Important Happenings
in HIV/Health Policy

Week Ending: August 10, 2018
By: Matthew Rose & Sable K. Nelson

NOTE: The House is now in recess until September 4. The Senate is on its scheduled recess until Wednesday, August 15.

 

INPUT REQUESTED: A National Community-Led Plan to End HIV/AIDS as an Epidemic

Since 2014, several U.S. cities, counties, and states have announced Ending the Epidemic (EtE) plans. What makes these initiatives unique– in addition to their ambition– is that they are driven by community leaders, including people living with HIV. In the spirit of the Denver Principles, these plans should be by and for those communities directly impacted by the epidemic. Recently, the Trump administration has announced that it will draft its own national EtE plan by mid-2019. This obviously raises many concerns. First and foremost, can the drafting of such a plan possibly truly be led by the communities disproportionately impacted by the epidemic, when these very communities are facing direct attacks by the current administration? In order to preserve the community-led spirit of EtE work, Act Now End AIDS (ANEA) – a national coalition of EtE leaders – intends to draft a community-led national plan. We will engage in a broad, multi-tiered process to collect as much information from impacted communities around the country as possible in order to accurately reflect what we need to end the HIV epidemic for all of us.
To add your comments, CLICK http://www.nmac.org/input-requested-a-national-community-led-plan-to-end-hiv-aids-as-an-epidemic/

 

WATCH: AIDS 2018: What Happened and What’s Next?

The Kaiser Family Foundation and the Global Health Policy Center at the Center for Strategic and International Studies (CSIS) held a briefing to assess the major outcomes of the 2018 International AIDS Conference (AIDS 2018), held from July 23-27 in Amsterdam, the Netherlands. The discussion touched on the latest scientific developments; the current funding climate for the AIDS response; and other major developments to the field emerging from the conference. The panel included:

  • Ambassador Deborah L. Birx, the U.S. Global AIDS Coordinator;
  • Chris Beyrer, professor at Johns Hopkins Bloomberg School of Public Health and past president of the International AIDS Society;
  • Jen Kates, KFF vice president and director of Global Health and HIV Policy;
  • Greg Millett, Vice President and Director, Public Policy, at amfAR; and
  • Stephen Morrison, senior vice president and director of the Global Health Policy Center at CSIS.

For more information, WATCH  https://www.kff.org/global-health-policy/event/august-10-event-aids-2018-what-happened-and-whats-next/?utm_campaign=KFF-2018-August-HIV-Event-International-AIDS-Conference&utm_source=hs_email&utm_medium=email&utm_content=65160034&_hsenc=p2ANqtz-9gHHBVSS5wS2kNwVWE3GXjX82BGYJ7_z5cGNfHwfuGED9fYE0Y03haRuxh06y0HA8SE4wdPZakxNKHRIPN-aCBI1a8PQ&_hsmi=65160034

 

Protect Medicaid a Key Part of the Social Safety Net

The purpose of Medicaid is to provide health care to low-income people. But in Kentucky, the state estimated 95,000 people would lose Medicaid. A federal judge ruled that Kentucky’s waiver could not be approved, because HHS hadn’t taken into account the likelihood that their policies would run counter to Medicaid’s purpose. So HHS has reopened the comment period on Kentucky’s Medicaid work requirement waiver plan through August 18 (this Saturday at 11:00 p.m. ET). They are looking to get more comments favoring work requirements.  HHS Secretary Alex Azar wants to approve them, despite the court’s ruling. But the judge was persuaded by the previous comments that the KY policy would deny medical assistance, not provide it. And Mississippi has its own waiver request for work requirements.  Parents in Mississippi can only qualify for Medicaid if their income is less than 27 percent of the poverty line ($84 a week for a mom and child). It’s a classic Catch-22: if very poor parents enrolled in Mississippi Medicaid don’t work, they will lose their health care. If they do work enough to comply, they will earn too much to qualify for Medicaid and will lose their health care.

Our friends at the Coalition on Human Need have created a template to submit your comments on the issue.

Click here for the link to have your voice heard on this issue 

The dangerous public charge conversation is back

Trump Administration is again looking at the issue of public charge. This policy would again tear apart families. If it moves forward, it would target legal immigrants who make less than $63,000 a year and their children. Trump is punishing people who wait years for a visa to come to America, work hard, and build a better life for themselves and their family. As many as 100 million people in the U.S. would fail themselves. Trump’s anti-immigrant attacks put families in danger.

For more information, VISIT → https://www.americanprogress.org/issues/poverty/reports/2018/07/19/453174/trumps-immigration-plan-imposes-radical-new-income-health-tests/ 

 

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:

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:

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 released a 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 x`of color. The full report can be found by visiting www.nmac.org/blueprint

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.