The Summit from a 50+ Perspective

50+ Strong & Healthy Program Scholar Zeke Garcia attended NMAC’s 2018 Biomedical HIV Prevention Summit. He contributed this report on his experience.

Since the provenance of HIV’s existence in my life, I have fought the good fight to end this epidemic. The foundation of this work is providing an integrated, comprehensive approach to treatment support. I am dedicated and driven to maintain, encourage, and support prevention and HIV  treatment engagement. While at the recent HIV Prevention Summit in Las Angeles I experienced discussions, debates, questions, and concerns that promote fact based information, understanding, respect, and compassion for PLWH. My initial takeaway was the discussion on PrEP and the Trans community and data limitations, lack of physicians and healthcare along with the need for cultural components including interpersonal HIV, PrEP, PEP, and TASP strategies of prevention, streamlined for Trans enrollment in biomedical services led by human capital, visibility, and transparency. PrEP offers a new paradigm of choices, decisions, actions, and responsibilities.

We have an unprecedented opportunity to be catalysts for real change in the world; not just with our bodies, but with our minds and actions. It invites us to rethink HIV prevention and sex as tools for expanding love, information, and compassion, instead of promoting fear, shame, and stigma, encouraging all to be part of a revolution of community, integrity, and unity by engaging in informed discussion. I believe in the power of information and education to transcend and empower individuals and communities.

As discussed in a session regarding HIV and Incarcerated Populations, those going into custody tend to be at elevated risk of HIV; I believe PrEP within the correctional setting encompassing gender affirming care for Gay,Trans and Cis gender inmates with a history of transactional sex and sexual trauma are key elements of the prevention continuum challenge.

Being privy to the groundbreaking Undetectable = Untransmittable (U=U) plenary was a highlight for me as an educated HIV Positive Latinx Gay man; I am personally inspired by the campaign. The information of today’s poor historians of HIV is outdated, stigmatizing, and fear based messaging which has quenched opportunities to improve the lives of people living with HIV, dismantle HIV stigma, and prevent new transmissions. I have personally amplified my role as an HIV Educator,  Community Health Worker, and Long Term Survivor of HIV. I actively advocate through sharing science based information within my community. The foundation of the certainty that U=U offers freedom and hope for many people living with HIV and their partners opens up social, sexual, and reproductive choices I never thought would be possible. It is an unprecedented opportunity to transform the lives of people thriving with HIV. As a USCA/NMAC 50 + Scholar I trust that a strong public health awareness of universal access to diagnostics, treatment as prevention will save lives and bring us closer to ending the epidemic.

Zeke Garcia HERRS/PN/CHW
He, Him, His, Él

2018 National Ryan White Conference on HIV Care & Treatment

By Robert Riester, 50+ Strong & Healthy Program Scholar

This biennial conference is presented and funded by the Health Resources and Services Administration’s (HRSA) HIV/AIDS Bureau (HAB), and intended for comprehensive HIV care and treatment providers, Ryan White HIV/AIDS Program recipients and stakeholders, national partners, and people living with HIV. There were 4,000 attendees. (Note that PLWH are listed last).
Before the conference officially begins, HRSA holds business meetings for the Ryan White (RW) programs. As an active Planning Council member, I was invited to attend DMHAP business meeting for RW Part A. The meeting included updates on Policy Clarification Notices (PCNs), notably: 16:02, 18:01 and 15:02 (search hhs.gov website). They urge RW recipients and sub-recipients to collaborate. Among the examples of collaboration mentioned were NMAC’s Building Leaders of Color program including: National Trans Women of Color trainings and National Youth trainings, and CHATT for Planning Councils and Planning Bodies. The biggest news of the meeting was that the RW programs have full appropriation and that FY 2019 grant awards should be made in full before the end of the year.

The standing room only DCHAP “Let’s Talk About HIV & Aging” meeting included an AIDS Education Training Center overview, a RW recipient presentation, a Round Table discussion and Integrated Geriatric Care Models. Education and training of all care providers would be the major takeaway from this meeting. The HIV & Aging norms that have been extensively reported in recent years, due in large part to the efforts of NMAC’s 50+ Strong and Healthy program and Long-term Survivor (LTS) advocacy efforts, were presented with updated data and observations. The Round Table discussion now focused on long-term care, facilities, training of their staff and how LTS on fixed incomes would afford these services. HRSA officials suggested this would be a good talking point when the RW Program comes up for re-authorization (time TBD). Perpetual poverty, psychological age, poly-providers equals polypharmacy, rural/transportation, and dental concerns were also big issues discussed. Due to the overwhelming interest in this meeting, it was offered again as a session the same afternoon.

The Opening Plenary session rapid Takeaways: The release of the 2017 updated RW Data Report; 45+ age demographic is rising; 90.6 percent viral suppression rate for the 50+ age demographic; HRSA recognition of U=U; PrEP recommendation letter for Grade A; Rapid ART Program Initiative; Long acting ARTs and Antibody-Mediated Prevention being researched; Data needs to be leveraged; Strengthen 340-B; Opioid epidemic connection; Update the National AIDS Strategy to 2020; Carl Schmidt and John Wiesman to head Advisory Council to meet in March 2019; and Targeted geographic funding for Washington DC, Birmingham AL, and Atlanta, GA for demographic young African American males, Latinos and MSM who are at highest risk for HIV.

The PLWH Listening session with Dr. Laura Cheever was at capacity and was not limited to PLWH. There were many questions, with few answers other than suggesting re-authorization talking points. There were a couple of sessions on employing PLWH as peer advocates, but still left me with a “them” feeling.

Overall much was learned and attending with my fellow Planning Council members and Grantee staff was an invaluable bonding experience. Collaboration, provider education/training, data sharing and re-authorization talking points were the overarching takeaways for this advocate. Thank you NMAC 50+ Strong & Healthy program, especially Moises, Sable and Joanna for your support!

Important Happenings in HIV/Health Policy

Important Happenings in HIV/Health Policy

Week ending: January 4, 2018
By: Sable K. Nelson & Matthew Rose

NOTE: The new Congress has arrived in DC, with historic numbers of women, people of color, and LGBTQ people. The 116th Congress began on January 3, 2019.

How The Government Shutdown Affects Health Programs

The partial federal government shutdown continues as Congress holds firm on its refusal to provide funding for the border wall. Medicare and Medicaid are fine, but the food safety component of the Food and Drug Administration and bio-threat surveillance done by the Department of Homeland Security are among the public health functions feeling the pinch. For more information, READ: https://khn.org/news/how-the-government-shutdown-affects-health-programs

Changes Proposed to Medicare Part D Prescription Drug Benefit

On November 26, 2018, the Centers for Medicare and Medicaid Services announced a proposed rule to add unprecedented access restrictions to lifesaving HIV drugs under Medicare Part D that, if finalized, will jeopardize our nation’s efforts to provide treatment to Medicare beneficiaries living with HIV. Comments must be received no later than 5 p.m. on January 25, 2019. For more Information:, https://www.federalregister.gov/documents/2018/11/30/2018-25945/modernizing-part-d-and-medicare-advantage-to-lower-drug-prices-and-reduce-out-of-pocket-expenses. Click here to go directly to the comment submission page.

Kaiser Health News: Medicaid Plans Cover Doctors’ Visits, Hospital Care — And Now Your GED

Emilia Ford became pregnant at 15 and, after her daughter was born, dropped out of high school. As she held down different jobs during the past decade — including housekeeping and working in a relative’s retail store — she always thought about going for her GED to show she met high school academic skills. But the Brookhaven, Pa., woman needed assistance finding tutors and paying for the set of four tests, which cost $20 each. https://khn.org/news/medicaid-plans-cover-doctors-visits-hospital-care-and-now-your-ged/

Florida Rejects Ruling on HIV-AIDS Care Contracts

Outgoing Gov. Rick Scott’s administration has rejected an administrative law judge’s recommendation that the state should rebid Medicaid managed-care contracts in Southeast Florida for the treatment of people with HIV and AIDS. Agency for Health Care Administration Secretary Justin Senior late last month issued a final order in a long-running dispute between the state and Positive Healthcare, a division of the AIDS Healthcare Foundation. Positive Healthcare filed a legal challenge after the agency awarded Medicaid contracts to a competitor, Simply Healthcare Plans. Administrative Law Judge John Newton issued a recommended order in favor of Positive Healthcare, but, under state administrative law, the issue had to go back to the Agency for Health Administration for a final order. For more information, READ → https://www.sun-sentinel.com/news/politics/fl-ne-nsf-medicaid-contracts-hiv-aids-20190104-story.html

They tested positive for HIV. Then the military kicked them out.

Testing positive for HIV was difficult enough. Getting forced out of the military by the Air Force because of the diagnosis proved even harder.So say two U.S. airmen who filed suit on Wednesday against Defense Secretary Jim Mattis in the U.S. District Court for the Eastern District of Virginia, arguing that the Pentagon’s decision last month to discharge them from the military owing to their HIV status violates the Constitution’s equal protection clause and federal law. Read_→https://www.washingtonpost.com/world/national-security/they-tested-positive-for-hiv-then-the-military-kicked-them-out/

What You Can Do

TAKE ACTION: It is very important that our elected officials hear from us to protect federal 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.

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 is planning for the new year and meeting our new members of Congress. We are very excited to talk to the new House about our priorities. We spent last Thursday stopping by members offices to welcome them to the Hill.
  • NMAC is working in coalition to defend the right of people living with HIV to serve in the US military.

Important Happenings in HIV/Health Policy

Important Happenings in HIV/Health Policy

Year ending: December 18, 2018
By: Sable K. Nelson & Matthew Rose

Another year in the books and the norm continues of some hot HIV takes in this last month of the year. NMAC wants to give you the highlights of what is happening at this time of year. While this will not be an exhaustive list, it will be a marking of things that we are actively working on at the end of this year. We’ll be back into the new year with highlights and actions to take in the political arena. If you have any questions, do feel free to email us.

Ending the Epidemic

For the first time since the National HIV/AIDS Strategy in 2010, the domestic HIV community has come together to call on the U.S. government to declare an official goal of ending the domestic HIV epidemic by 2025 and urging it to enact legislative and regulatory policies and sufficient appropriations to achieve this goal. The Act Now: End AIDS coalition, with a process managed by AIDS United, solicited input from the larger HIV, public health, and reproductive health communities to develop the policy paper, titled Ending the HIV Epidemic in the United States: A Roadmap for Federal Action. To date, 300 HIV and community organizations from across the U.S. have provided their endorsement.

PEPFAR

Once again PEPFAR has been reauthorized with strong bipartisan support. For 15 years, PEPFAR helped to share critical resources to help fight the HIV epidemic aboard. In the areas of HIV prevention, treatment, and care, some of the world’s most vulnerable populations have benefited from this program, saving more than 17 million lives. PEPFAR has continued to support a rapid acceleration of HIV prevention by using data to increase program performance, mobilize domestic resources, and support local partners for sustainable implementation.
https://www.vox.com/future-perfect/2018/12/12/18136716/pepfar-hiv-aids-trump-congress

Announcements from the Secretary

Department of Health and Human Services Secretary Alex Azar assured the HIV community on Tuesday that new proposals around Medicare Part D would not cut off critical access to lifesaving medications. The administration had proposed some changes to programs that could significantly hinder access for those living with HIV. In a speech at the 2018 National Ryan White Conference on HIV Care and Treatment in Maryland, Azar said the administration’s recent proposal to allow Medicare Part D plans to negotiate better prices for drugs in “protected class” would not limit access to antiretrovirals used to treat HIV. Public comment about this proposed rule is due at the end of next Monday. Furthermore, the Secretary also announced two co-chairs for the President’s Advisory Council on HIV/AIDS: Carl Schmid and John Wiesman. Schmid serves as deputy executive director of The AIDS Institute. Wiesman is Secretary of Health for Washington state.
https://www.fiercehealthcare.com/regulatory/azar-assures-hiv-patients-protected-class-proposal-won-t-cut-off-access-to-drugs

Administration threats future of HIV research

On December 5, 2018, the Washington Post broke a story about the Trump administration — by and through the Department of Health and Human Services — potentially curtailing an HIV research contract after pressure from anti-abortion activists because the project relies on fetal tissue to generate mice with humanized immune systems, an important animal model for HIV research. Other similar research is also likely to come under threat. (WaPo story: https://www.washingtonpost.com/national/health-science/trump-administration-threatens-future-of-hiv-research-hub/2018/12/04/f2e8e0ec-f7dd-11e8-863c-9e2f864d47e7_story.html?utm_term=.7d9094e88286)

HIV in Puerto Rico After the Storm

Policy Lead from Partnership of the Nation’s Leading HIV, STD, and Hepatitis Organizations Appointed Co-Chair of the Presidential Advisory Council on HIV/AIDS (PACHA)

Partner Logos - AIDS United, NASTAD, NCSD, NMAC, The AIDS Institute

Washington, D.C. – We applaud Secretary of the Department of Health Human Services Alex Azar’s announcement of new members of the Presidential Advisory Council on HIV/AIDS (PACHA) and the naming of Carl Schmid, Deputy Executive Director of The AIDS Institute, as a co-chair. Mr. Schmid is one of the key policy leads for the HIV, STD, & Hepatitis Policy Partnership, a coalition of five of the nation’s leading organizations focused on ending the HIV, STD, and viral hepatitis epidemics in the United States.

The Partnership is the driving force behind a new policy paper that lays out a clear roadmap for federal action to end HIV and the intersecting epidemics of STDs, hepatitis, and opioids in the United States. The paper is an essential framework for guiding PACHA’s work and meeting the goals of the National HIV/AIDS Strategy.

Secretary Azar made the announcement in a speech at the 2018 National Ryan White Conference on HIV Care and Treatment where he laid out a vision that the U.S. become a nation “where the spread of HIV/AIDS has been effectively halted, because every American with HIV/AIDS is receiving treatment and every American at risk of HIV is engaged in the right prevention strategy.”

In the past, PACHA was an invaluable body that provided a voice for the community to share advice, information, and recommendations with the Administration regarding the nation’s HIV-related programs, policies, and research. Mr. Schmid has been a leader in ensuring domestic HIV programs are fully funded and based on sound public policy for nearly two decades. He is a trusted expert in health care financing systems and is actively engaged in efforts to ensure that the Affordable Care Act meets the needs of people living with or at risk of HIV and hepatitis.

HIV is not a partisan issue and continues to be a public health threat that must have the right leadership and resources necessary to end new transmissions and ensure access to quality prevention and treatment for everyone who needs it.

The reconvening of PACHA and Mr. Schmid’s appointment represent an important step in ensuring our progress to end HIV and the intersecting epidemics of STDs, hepatitis, and opioids continues. We look forward to continuing to work closely with PACHA and the Administration, and wish Mr. Schmid well in his new role. Mr. Schmid will co-chair PACHA with Washington State Secretary of Health Dr. John Wiesman.

The next PACHA meeting is March 14-15, 2019 in Washington, D.C.

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AIDS United (AU), NASTAD, the National Coalition of STD Directors (NCSD), NMAC, and The AIDS Institute (TAI) are national non-partisan, non-profit organizations focused on ending the HIV, STD, and hepatitis epidemics in the United States by sharing resources to advocate for HIV, STD, and hepatitis programs and appropriations.

Important Happenings in HIV/Health Policy

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

NOTE: The U.S. Senate and U.S. House of Representatives returned from recess on Nov. 13th.

Key Take Healthcare Related Takeaways from the 2018 Midterms
Health Care Was the Most Important Issue to Voters, Fueling a Democratic Majority in the House of Representatives

According to national exit polls, voters said health care was the most important issue by a two-to-one margin compared to the second most important issue, immigration, 41 percent to 23 percent, and Democrats won those voters 77 percent to 22 percent. Among the competitive GOP-held districts, Democrats had an 8 point advantage on health care, 52 to 44 percent. When it comes specifically to protecting people with pre-existing conditions, voters preferred Democrats over Republicans by a 24-point margin , 58 percent to 34 percent.

While most of us were focused on selecting elected officials, voters across the country also weighed in on several ballot initiatives in many states that will impact healthcare (including Medicaid expansion). For more information about what happened, please and how it may impact you, READ → https://www.salon.com/2018/11/10/midterm-results-show-health-is-important-to-voters-but-no-magic-bullet_partner/

The Trump-Pence Administration Finalized Dangerous and Unlawful Birth Control Rules Just One Day After the Mid-Term Elections

The day after the mid-term elections, the Trump-Pence Administration ramped up its assault on women’s health. In addition to attacking insurance coverage of abortion and the Title X family planning program, the Administration finalized two rules that would gut the Affordable Care Act’s birth control benefit, which requires health plans to cover all FDA-approved birth control methods for women without out-of-pocket cost. If the final rules go into effect as the Trump-Pence Administration would like them to on January 14, 2019, they will allow virtually any employer or university claiming a religious or moral exemption to deny insurance coverage of birth control to their employees and students. NWLC is suing the Trump-Pence Administration and supporting legal challenges by several states to stop these dangerous rules from going into effect.
READ → https://nwlc.org/blog/the-trump-pence-administration-finalized-dangerous-and-unlawful-birth-control-rules-just-one-day-after-the-mid-term-elections/

LISTEN: KHN’s ‘What The Health?’ Split Decision On Health Care

In the latest episode of KHN’s “What the Health?” Julie Rovner of Kaiser Health News, Margot Sanger-Katz of The New York Times, Rebecca Adams of CQ Roll Call and Joanne Kenen of Politico discuss the Trump administration’s new birth control coverage rules and the potential impact of the midterm election results on health policy. For more information, READ → https://khn.org/news/podcast-khns-what-the-health-split-decision-on-health-care/

Understanding the Various Healthcare Proposals (such as Medicare-For-All and Single-Payer?)

As politicians across the country toss about such health care catchphrases, sometimes interchangeably, many voters say they’re “just confused.” As we prepare for a new Congress, please take a moment to understand the various healthcare proposals. For more information → https://khn.org/news/quick-whats-the-difference-between-medicare-for-all-and-single-payer/

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.

What NMAC is Doing About It

  • NMAC is beginning to meet with the new congress to make sure HIV remains front and center
  • Working on national Ending the Epidemic plans and implementation
  • Engaging with the CDC about molecular surveillance

Being an HIV 50+ Scholar at USCA – Part Four

We asked several of the 50+ Strong and Healthy Community Scholars to share their USCA experience with us. This week, we have Robert Riester.

This was the third USCA to host 50+ Strong & Healthy Scholars and the first year to host Transgender and Youth Scholarship programs. These three programs are a direct result of inclusion for voices that have not been heard. The USCA conference has historically been a venue for the voiceless. Produced by the National Minority AIDS Coalition or NMAC and its very colorful and animated executive director Paul Kawata of National Association of People with AIDS or NAPWA fame, the USCA conference is never boring.

The opening plenary luncheon: Activism and The Intersection of Movements Fighting for Social Justice aptly featured none other than Larry Kramer of ACT UP and The Normal Heart fame via video due to his poor health. It was clearly a struggle for him to read from his own script, but it was obvious that his pen and his mind were still very strong. The other speakers were equally passionate for the times we live in now, featuring: Naina Khanna-Executive Director, Positive Women’s Network; Abigail Echo-Hawk-Director of Urban Indian Health Institute; Alicia Gara-Co-Founder of #BlackLivesMatter; Havid Hogg-Activist and Survivor of Marjory Stoneman Douglass High School mass shooting; and Richard Zaldivar-Founder of The Wall Las Memorias Project. The themes of racism, gun violence, health access and equity were beautifully balanced with a tribute to Sylvester by Disco Diva, Thelma Houston and here signature song ‘Don’t Leave Me This Way’, summed up the message perfectly.

Being one of the 50+ Strong & Healthy Scholar alums, my session attendance was focused on HIV & Aging. The first session was introduced by NMAC Executive Director Paul Kawata and Moises Agosto with a discussion about the importance of the Mini-Grant program, possible future Sponsorship of a Conference on Aging, and Internships. I learned something new at every session I attended, as I always do. I also reunited with some old ‘NMAC Family’ friends and made some new ones.
The Saturday plenary session: Trauma Informed Care with a focus on HIV & Aging was produced by and with 50+ Strong & Healthy alums. ‘The Survivor Monologues’ focused on five emotions that come with long-term survival: Uncertainty/Fear; Anger/Action; Emotional Rollercoaster; Hope, and Resilience. According to many accounts, it was one of the most powerful plenary session segments ever done at USCA. It left the attendees who were all proudly standing in ovation, with a feeling of inspiration and empowerment. Thank you, NMAC!

Robert Riester