Ryan White HIV/AIDS Program Funding Raided, Again

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Over the summer the Trump Administration raided previously unspent Ryan White HIV/AIDS Program funding from Fiscal Years 2015-2016 to pay for its controversial "zero-tolerance" immigration policy. The ADAP Advocacy Association sounded the alarm not once, but actually two times over concern about the dangerous precedent established by transferring these funds. We warned if funding budgeted to provide supports and services to people living with HIV/AIDS could be diverted on one occasion, then what would prevent it from happening again? Unfortunately, our concerns were validated because more money is being taken away from these important programs to fund the immigration child detention centers on our southern borders.

Insert the phrase: "We were right!"

Photo Source: virginiainterfaithcenter.org

The Trump Administration, rather than asking how we can ensure these funds are better spent as they were intended...to help meet the needs of the people living with HIV/AIDS more readily...has decided the epidemic is of less a public health concern than putting kids in cages.

We applaud AIDS United once again for leading the charge and holding the Trump Administration accountable for this thievery! We encourage you to read their recent action alerts in The Body:

• Hands Off HIV Funding and Immigrant Children!
• From Safety Nets to Barbed Wire: Secretary Azar Takes Money From HIV Programs to Pay for Detention of Immigrant Children

Among other vital program funding being raided again, State AIDS Drug Assistance Programs ("ADAP") stand to lose $5.75 million in unspent funding from the current Fiscal Year. This isn't so-called "fake news" either. A letter to Congress from Alex M. Azar II, Secretary of the U.S. Department of Health & Human Services ("HHS"), spells it out in plain language.

Think about it; there was over $2.6 million taken from HIV prevention programs. Like we still don't have people at risk for contracting HIV, right?

Think about it; there was over $6.3 million taken from mental health and substance abuse programs. Like untreated mental illness isn't an ongoing issue, right? Or like there isn't an ongoing opioid epidemic, right?

Think about it; there was over one million dollars taken from viral hepatitis programs. Like we don't have an emerging Hepatitis C crisis, right?

The fact remains that the people living with HIV/AIDS who reply on ADAP — and who rely on other HIV-related programs being impacted by this move — are PISSED OFF! Let me repeat, they are PISSED OFF!

Whereas HIV-infection can now be characterized as a chronic illness, nearly 20,000 people annually receive an AIDS diagnosis.[1] And yes, people still die of AIDS in this country, including some who cannot access life-saving treatments. People living with HIV/AIDS are watching their brothers and sisters struggle to endure the challenges present with this illness, all while their government appears hell-bent on undermining the progress made under the previous four Presidents!

Photo Source: accidentallygay.com|

Putting aside the inhumane nature of these immigration child detention centers (if that is even remotely possible, mind you), there is plenty of evidence available for people living with HIV/AIDS to be concerned over ongoing raiding of the funding from the Ryan White HIV/AIDS Program. The Trump Administration is infested with right wing, religious ideologues who frown upon people who are different from their WASP (White Anglo-Saxon Protestant) culture. Such evidence was on full display this week.

The sad reality is starring our HIV community squarely in the face. The Trump Administration doesn't care about people living with HIV/AIDS. There are simply too many examples to site, too. And far worse, there is no reasoning with the right-wing, religious ideologues who are pulling the strings behind the scenes. It's hard for our people to be tactful when their being punched in the face by bigots.

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[1] U.S. Centers for Disease Control & Prevention (2018, August 6). HIV in the United States: At A Glance (AIDS Diagnoses). Retrieved from https://www.cdc.gov/hiv/statistics/overview/ataglance.html.

HIV Stakeholder Surveys

By: A. Toni Young, Executive Director, Community Education Group

Community Education Group (CEG), a nonprofit located in Washington, DC  that is dedicated to ending HIV and related health disparities. CEG has a commitment to changing the way the world tackles public health in underserved communities. My colleague, Dr. Tyriesa Howard Howell, and I (A. Toni Young)  are conducting disseminating two surveys study to evaluate how nonprofit organizations around the world are preparing to ensure their sustainability. One participant from each survey who completes the survey in its entirety will be randomly selected to win a $200 gift card that will be electronically delivered by December 1, 2018.

• Survey 1: Project Boundless

https://www.surveymonkey.com/r/RYB9MH6

BACKGROUND
Throughout the 30+ years of the fight against HIV, medical advancements such as antiretroviral therapy (ARV) and pre-exposure prophylaxis (PrEP) have shifted the ways in which nonprofits (including CEG) have evolved in an effort to maintain the community's presence and engagement in HIV treatment and prevention. As a part of our evolution, community organizations have embraced our roles in Red Carpet linkage-to-care networks, transitioned from traditional behavior modification approaches by navigating community members to PrEP, and have expanded other areas in the services we provide. On the dawn of a new day in HIV service delivery, that being HIV cure research, we would like to learn more about your organization's preparation for the next phase of the fight.

WHY WE'RE ASKING
The purpose of our study is to inform how to best establish a global dialogue among non-government and community organizations concerning the impact of biomedical HIV treatment and cure-related research. This research will also help us understand how finding an HIV cure may affect organizational sustainability.

WHO WE'RE ASKING
Participants 18 years and older that are affiliated with nongovernmental, nonprofit and community-based organizations are being asked to participate.

WHAT WE'RE ASKING
Please complete our survey and share it with other colleagues on the frontlines of community-based HIV prevention and treatment.

This study was approved by the New England Review Board (Protocol No. 120180166).

• Survey 2: The Equitable Access Survey

https://www.surveymonkey.com/r/TFCWTTX

BACKGROUND
The Equitable Access Coalition (EAC) seeks to mobilize a diverse group of individuals and organizations reflecting persons of color living in rural communities in the South. We want to influence policy change and provide access to education affecting policy change at the state and county levels.

WHY WE’RE ASKING
Our purpose is to:
1.   increase access to HIV prevention care and treatment with an emphasis on PrEP;
2.   increase access to HCV screening, education, and treatment; and
3.   increase access to family planning and health services for transgender men and transgender women.
4. identify local and state policy issues

We are interested in organizations located in the Southern United States:  including Washington, DC, Maryland, Virginia, West Virginia, Tennessee, Kentucky, Arkansas, North Carolina, South Carolina, Georgia, Alabama, Mississippi, New Orleans, Florida, and Texas.

WHO WE'RE ASKING
Organizations and persons representing these key populations: people living with HIV and/or HCV, injection drug users, formerly incarcerated, harm reduction specialist, gender nonconforming individuals, transgender men, transgender women, same gender loving persons, persons with substance use disorders, heterosexual men, and heterosexual women.

WHAT WE'RE ASKING
Please complete our survey and share it with other colleagues.


Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

3rd Annual National Monitoring Report on HIV/HCV Co-Infection

By: Marcus J. Hopkins, Consultant, Community Access National Network

The Community Access National Network (CANN) will be hosting its 3rd Annual National Monitoring Report on HIV/HCV Co-Infection on Wednesday, September 19th, beginning at 2:00 p.m. EST. This annual report provides valuable information on the state of Hepatitis C (HCV) treatment coverage, harm reduction measures to prevent transmission of HIV and HCV, and, new to this year, a brief focus on HIV and HCV testing and treatment for individuals currently incarcerated and post-incarceration.

Returning this year are yours truly (as the Project Director for the HIV/HCV Co-Infection Watch and Medicaid Watch), and Amanda Bowes, Manager on the National Alliance for State and Territorial AIDS Directors’ (NASTAD) Health Care Access Team. New presenters for 2018 include Ayesha Azam, Senior Director of Medical Affairs at the Patient Access Network (PAN) Foundation, and Jack Rollins, Senior Policy Analyst at the National Association of Medicaid Directors.

At last year’s National Monitoring Report, I focused on the increase in coverage options for both the Ryan White and Medicaid programs, showing how treatment options have expanded across the country since 2015 (when the HIV/HCV Co-Infection Watch began). Mrs. Bowes provided more detailed information available about coverage, as well as NASTAD’s efforts to expand coverage for Hepatitis C (HCV) Direct-Acting Antivirals (DAAs) within the nation’s AIDS Drug Assistance Programs (ADAPs).

This year’s event is sponsored by the ADAP Advocacy Association, Gilead Sciences, Merck, Quest Diagnostics, Walgreens, and the Pharmaceutical Research and Manufacturers of America (PhRMA).

The 3rdAnnual National Monitoring Report on HIV/HCV Co-Infection can be attended either in person at PhRMA Headquarters in Washington, DC, or remotely for non-DC residents. Registration is free and can be done online. While registration is free, there is limited seating for those attending in person and advanced registration is required to attend.

Learn more at http://www.tiicann.org/events.html#091918cr.


Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Older Adults with HIV: The Forgotten Majority

By: Tez Anderson, Founder & Executive Director, Let’s Kick ASS—AIDS Survivor Syndrome

Older Adults with HIV make up 60 percent of all people living with the virus in the United States. But the majority cohort continues to overlooked and ignored by HIV/AIDS care, services and community-based organizations, international and national AIDS conferences, and governmental bodies.

The median age of the people living with HIV in America is 58. Approximately 660,000 of the estimated 1.1 million women, men and transgender people living with the virus over age 50. A proportion that in 2020 will increase to 70 percent.

As HIV activists, we hear a lot about “key populations,” disparities” and “bridging the gaps.” The conversation usually revolves around gender, gender expression, race and poverty and the roles they play in people with HIV lives.

But the topic of Aging and HIV isn’t brought up. Why is it that the largest key population—Older Adults with HIV—is never included in these gaps? Why do older people with HIV receive the least attention, funding, and focus?

It would be easy to point the finger at discrimination based on age, or ageism. While that is undoubtedly part of the problem, there is more to it.

For one, HIV has all but disappeared from the mainstream headlines in the U.S. It was once a fatal disease and is now a “chronic manageable disease,” ignoring the fact that without daily medications it is still deadly. Most long-term survivors scoff at the idea that it is easily managed. HIV/AIDS is no longer on most people’s mind.

For another, the HIV care community and conferences have overoptimistically focused a cure (which remains elusive) and being “AIDS-Free” by some arbitrary date. It was once in 2020, and now it is 2030.

The people and agencies providing our care are more focused on the future while older adults are regarded as relics of a bygone era. Our lives are defined by mass causalities, enormous loss, caretaking, illness, and ensuing trauma. We hear little about the astounding resilience of the first generation of people with HIV/AIDS. We do not think of individuals living with this virus for 20 and 30-plus years are the pioneers of the AIDS epidemic. We are survivors of the worst epidemic in history. Alas, too often we are just thought of as old.

Examples of the indifference include the U.S. Centers for Disease Control & Prevention ("CDC") is aging data from 2013, old statics which vastly under-represents the present-day reality. September 18 is National HIV/AIDS and Aging Awareness Day. But the folks that originated the day have all but abandoned it. The website has not been updated years. If there’s a theme for 2018, I can’t find it.

This ongoing in indifference has an impact on the health and well-being of older adults. Lost in the apathy are the complexities and nuances of HIV and aging. What about our lives right now?

For instance, the differences in quality of life for long-term survivors and those older adults who have acquired HIV more recently. These facets matter.

Polypharmacy is a big word for the number of medications we take for “non–HIV comorbidities.” We appear to be aging at an accentuated rate too. Older adults with HIV are more likely to exhibit characteristics of people in their 60s, 70s or even 80s. In other words, 60 is the new 70 for those living with HIV for decades.

I often wonder if part of the problem is the aim established by the CDC and UNAIDS which states the “ultimate goal is achieving viral suppression.” They don’t have a vision for what happens next. What is beyond viral suppression for a population aging with HIV?

What about those living with HIV who are who’ve been undetectable for years. Then what? It seems to be the end of a conversation not the start of another dialogue about. How about we focus on what it will take to change the narrative to what it will take for healthy aging with HIV? How does that look? Isn’t that a worthier goal?

Aging is not on the agenda. It is time to change this. It will take us demanding it and not put up with invisibility. We are the ones that changed the face of healthcare advocacy for all diseases. Are we up for doing the something to envision an agenda for aging with HIV?

Some communities around the country are taking matters into their own hands and holding dedicated HIV and Aging Conferences. I’ve spoken at some of these conferences, and they are incredible. But are we not worthy of an “aging track” or the spotlight on the main stage at expensive AIDS conferences?

The thing I hear most from older adults and long-term survivors is they feel forgotten and invisible. If this is how we treat our aging population what’s the message we are sending to young people living with HIV?

It seems the focus is on “ushering in an AIDS-Free generation” and a concerted effort to End AIDS by, first it was 2020, now it is 2030. What does “ending AIDS” mean to those of us living with AIDS for decades? Most of us finishing it “after I’m dead.”

I know we can walk and chew gum at the same time. We can envision an AIDS-free generation and ensure that our health care system and services are empowering the first generation to live meaningful and healthier lives.

Learn more about Let’s Kick ASS—AIDS Survivor Syndrome online at https://letskickass.hiv.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.