Second-Annual Client-Level ADAP Report Released

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor

The Division of Policy and Data in the HIV/AIDS Bureau (HAB) at the Health Resources Services Administration (HRSA) has released its second annual Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report (HRSA, 2020). This report covers client-level data about the ADAP program for calendar years 2014-2018, including client demographics, socioeconomic factors (e.g. – income, healthcare coverage), and service utilization among clients enrolled in ADAP.

The 2018 report found the following:

• ADAPs served 285,000 People Living with HIV (PLHIV) in 2018;
• The majority of ADAP clients are male, and nearly three-quarters are from racial or ethnic minorities;
• White clients tend to be older than minority clients;
• More than half of female ADAP clients are Black;
• More than one-third of all ADAP clients have no health care coverage;
• Clients living at or below 100% of the Federal Poverty Level (FPL) are more likely to be minorities, female, and/or transgender; and
• The percentage of clients receiving only full-pay medication assistance has decreased, while the number of clients receiving other services, or a combination of services, has increased.

In looking at this report, one of the things that is confusing, not about the report, but in the way that HHS has classified Geographic Regions does not comport with U.S. Census Regions. This problem is not, however, unique to HHS – federal agencies have no single, standardized way of accounting for several measures – geographic regions, whether or not an area is rural, how populations are measured – each agency has its own ideas about who is whom and where they live. This means that regional reporting across federal agencies will differ from agency to agency, making it difficult to try to run initiatives that operate across state and local agencies, as funding and analysis doesn’t always align.

Those issues aside, the number of clients served increased by around 17,000 from 2017 to 2018, which is likely because more people are aware of and accessing services. I say this, because the total number of new HIV diagnoses has been steadily declining for several years. This can be seen as a partial success – a failure that people continue to contract HIV, but a success in that more people are being linked to care.

ADAP continues to be one of the most valuable programs in our nation’s healthcare system, as funds from ADAP can be used to purchase healthcare coverage for clients though “insurance continuation” – paying premiums and/or co-pays for insurance plans either purchased off the private market, or by reimbursing clients for employer-provided health insurance. 17.1% of clients currently have private insurance, 7.8% have employer-provided insurance, 14.6% have Medicare, and 10.9% have Medicaid coverage.

With the onset of the COVID-19 Pandemic, I expect the following things to occur that will make the Ryan White and ADAP Programs more important for PLHIV than ever:

• There will be an increase in new HIV diagnoses in 2020, specifically among People Who Use/Inject Drugs (PWUDs/PWIDs). One of the negative consequences of shut-downs, stay-at-home orders, and hospital/clinic/emergency room service disruptions and restrictions is that PWUDs/PWIDs were often cut off from their social and healthcare networks, including Harm Reduction Programs (HRPs) and/or Syringe Services Programs (SSPs). These disruptions did not, however, mean that these people lost access to their drug suppliers or stopped using – they simply began using less safely. This means that we are likely to see a drastic increase in both HIV, and Viral Hepatitis transmissions within that demographic – a demographic that also tends to have lower incomes and less access to healthcare coverage;
• Regular HIV testing has been disrupted, as a result of service interruptions related to COVID-19 and will likely remain disrupted until the pandemic eases. As such, it is likely that surveillance data will be spotty, at best, returning artificially low incidence counts in 2020 and potentially 2021/2022. We may not know the full scale of HIV transmission until 2023 or later, after testing rates return to normal, the two-year data lag that exists between states reporting to the Centers for Disease Control and Prevention (CDC), case confirmation, and CDC reporting of incidence and prevalence;
• Ending the HIV Epidemic (EHE) Phase II funding is not expected to begin until 2025, meaning that rural states, like West Virginia, that see HIV outbreaks related to Injection Drug Use, and other jurisdictions not included in Phase I may, plainly put, be out of luck when it comes to securing federal funds to expanding testing, surveillance, and linkage to care; and
• The economy during the pandemic has led to millions of job losses and, as a result, millions of individuals who may lose their employer-provided health insurance on top of losing their source of income. For PLHIV, this means that they will be in need of coverage, and for that, Ryan White and Medicaid may need to step in to fill that gap.

These issues mean that patients who do test positive during these times will be more reliant upon the Ryan White and ADAP Programs than at any time in the last decade.

Download the report online at https://hab.hrsa.gov/sites/default/files/hab/data/datareports/2018-hrsa-adr-data-report.pdf.

References:

• Health Resources Services Administration. (2020). Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report. Rockville, MD: Health Resources Services Administration: HIV/AIDS Bureau: Division of Policy and Data. https://hab.hrsa.gov/sites/default/files/hab/data/datareports/2018-hrsa-adr-data-report.pdf

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. 

Treatment Delays Continue to Increase for Vulnerable Patients

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor

There were numerous news reports over the summer about patients experiencing medication delivery delays being caused by the ongoing issues confronting the United States Postal Service (USPS). For patients who rely on mail-order prescriptions it is problematic. For those patients who are people living with HIV, it is even more problematic. Why?

Photo Source: NBC News

“Make certain you take your meds at the same time, every day, and never miss a dose.”

This was the first piece of advice I remember hearing about HIV medications, back in the 90s, and also when I started on my first regimen (Norvir, Lexiva, + Truvada). I had to store the Norvir capsules in the refrigerator and take my meds to work in a waterproof baggie kept in a lunchbox with an icepack – if the pills got wet, the dyes in the Truvada would melt everywhere, and it was just a freakin’ mess.

When I moved to Tennessee from Ft. Lauderdale, Florida, my Ryan White Part B meds were delivered via mail order, and I had to remember to reorder meds, every month, or I would be left with no alternatives, but to skip a dose. And skipping doses is very bad business, I was told.

“If you miss your dose, take it within 24 hours, or your virus will mutate, and you’ll become resistant to your meds, making it harder to treat!”

This was the conventional wisdom, for much of our treatment knowledge around HIV, because the older regimens had shorter half-lives (the presence of the drug in the blood decreased more quickly over time). As regimens have improved, we’ve seen 72-hour half-lives in some regimens, and research indicates that missing a single dose won’t cause the development of a drug resistance (Tong, 2017):

Wohl explained that people most commonly miss antiretroviral medication doses because of events in their life that cause chaos or get in the way of pill-taking. It’s not because HIV antiretroviral pills are harder to take than other pills or because they cause more side effects. (Tong, 2017)

When I moved from Los Angeles back to Morgantown, West Virginia, I was receiving prescriptions in three-month amounts. I had my ex send me my prescriptions via the USPS, and the first time, everything went perfectly. The second time, in July, the delivery went astray, which forced me finally get meds, here in WV, instead of relying upon my California AIDS Drug Assistance Program (ADAP) prescription to run out, but there was a sincere scare, there, that I would miss several days’ worth of Stribild.

That single mail mishap – which was apparently left where dogs were able to carry it off – resulted in a panic like none I’d ever faced; one that I’m seeing replicated all over the U.S. as a result of recent mail delays.

2020 has been a nightmare, on a number of fronts: a global pandemic, an incompetent U.S. response to said pandemic, and criminally competent administrative officials determined to disrupt and delay mail delivery in the U.S.

COVID-19’s arrival in the U.S. resulted in a very bad set of circumstances for the HIV world:

1.) For those most at risk of contracting HIV, organizations and agencies that traditionally provided regular HIV testing as a part of their services (e.g. – Harm Reduction Programs, Syringe Services Programs, Health Departments, Free Clinics, et cetera) have been forced to reduce their hours of operation, change the way they operate by limiting access to on-site facilities and reducing off-site/mobile services, or cease operation, altogether;

2.) In response to the threat of overcrowded hospitals and physicians’ offices led to extreme measures being taken to limit the number of persons allowed in buildings at any one time, with many existing HIV patients having to reschedule their visits for months later, in the hopes that circumstances would improve;

3.) For those receiving their medications via mail delivery, a number of critical changes put in place by a newly confirmed (and supremely unqualified) USPS Postmaster General have led to the destruction of mail sorting machines, the removal of overtime approvals, and an order that mail trucks leave regardless of whether or not there is still mail to load. This has resulted in mail delays of days – in some cases, even weeks – which, for people treating their HIV, can mean the mutation of their virus and the development of multi-resistant strains.

To be fair, there have always been minor snafus with mail order medications. A lost prescription; deliveries to the wrong addresses; weather-related mail delays. Since July 2020, however, these mail delays have gotten longer and more serious (Soprych, 2020).

Photo Source: The Spokesman-Review 

Medication delays create a terrifying feeling of helplessness – there’s nothing that you, as a patient, can do to make postal/parcel workers find your medications, any faster; few pharmacies have in place the ability to narrow down or track medications using any GPS tracking; depending on the price of your medication(s), insurance companies and/or Medicaid may refuse to replace lost medications.

There is an abject feeling of despair, wondering whether or not you could’ve done something differently. You run scenarios in your head of going to get your mail, and to find it waiting for you with a note from a neighbor or the carrier, apologizing for the delay. You entertain vengeful fantasies of mail carriers fired for their incompetence. All the stages of grieving, all over some lost pills.

The worst is when you try to make do by trying alternatives – purchasing individual doses from the pharmacy, is one:

Matheny called the Postal Service about his prescription and was told that employees couldn't locate his medication. He called his insurer, but it wouldn't approve another refill because the medication is too expensive.

So, Matheny has been buying a single blood thinner pill from a community pharmacy every few days, when he can afford it. He has spent more than $400 so far. (Pfleger, 2020)

I did the same, once, with my HIV medications, in Los Angeles: $600 for three days of medications. As a waiter in a sports bar, I could bring in $120, on a Friday or Saturday night. During the week, I’d be lucky to break $100. Every dollar I made, in one week, went to purchase meds for three days.

For patients who live in rural areas, however, access to a pharmacy willing to do this may be entirely out of the question. For those patients, mail delivery may be the only way they can reliably receive medications. This makes the types of consistent mail delays that have occurred since July – when many of these policy changes were introduced – wholly unacceptable. 

Worse, still, is that no one will be held accountable for the negative consequences of these policies. No postal officials who approved these “cost saving measures” will be hauled before a court of law and charged with the deaths or criminal negligence that results from these delays, because that would require a system being in place to hold them criminally liable.

So, what can be done?

Much like those patients who are relying on a crippled USPS, the only thing to do is wait.

References:

• Phleger, P. (2020, August 25). Postal Service Slowdowns Cause Dangerous Delays In Medication Delivery. Washington, DC: National Public Radio: Side Effects Public Media: Shots. https://www.npr.org/sections/health-shots/2020/08/25/905666119/postal-service-slowdowns-cause-dangerous-delays-in-medication-delivery
• Soprych, C. (2020, September 10). Mail delivery mostly on-time until July [Graphic]. Spokane, WA: The Spokesman-Review: News. https://thumb.spokesman.com/KpKPwHsKl5SlEp-AZMgy7F0rnoE=/1200x0/media.spokesman.com/photos/2020/09/10/5f5b027f540f3.image.jpg
• Tong, W. (2017, December 04). Here’s what you need to know about HIV drug resistance. San Francisco, CA: San Francisco AIDS Foundation: Treatment. https://www.sfaf.org/collections/beta/heres-what-you-need-to-know-about-hiv-drug-resistance/

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. 

Gareth Thomas: Fighting HIV Stigma with Empowerment

By: Sarah Hooper, intern, ADAP Advocacy Association, and senior at East Carolina University

The decision to disclose an HIV status has become more common over the last decade, but challenges remain. Namely, HIV-related stigma. Dating back to 1991 with the disclosure by Earvin "Magic" Johnson Jr., celebrities sharing their HIV status has helped to change societal attitudes. In late 2019, Welsh rugby player Gareth Thomas announced he was HIV positive, with the end goal to make sure that people understood HIV did not weaken him as a person. (The Guardian).

The stigma surrounding HIV has often created the false narrative of ‘this is the end’ - which is anything but true! Thomas used his massive media celebrity platform to speak, not only for himself, but others with living with HIV. Thomas wants to educate the world using hope and resiliency to end the negative stigma associated with HIV. 

Thomas is a big name within sports in the United Kingdom, and the announcement of his HIV status came just prior to the news about his marriage to Stephen Williams-Thomas. Revealing his sexuality in the world of rugby back in the early 2000s made headlines but coming out with HIV in 2019 felt just as big, according to Thomas. 

Photo Source: Huffington Post UK

“It felt much more shameful,” Thomas said. “This was something that I felt people wouldn’t understand.”

Prior to announcing his HIV diagnosis in 2019, Thomas said he ran into issues with the press wanting to reveal his diagnosis before he could tell his parents. The Sun ran a story about an ‘unnamed sports player’ who would reveal he had HIV, which upset Thomas greatly.

Thomas was disappointed in the media’s response to his HIV diagnosis, and said the media still has an appetite to expose people as HIV positive. One example of this was the negative reaction to Magic Johnson’s announcement of his HIV positive diagnosis in the 1990s, when HIV was still unfamiliar to many. Even with proper treatment and prevention, HIV still carries a stigma for many people, which Thomas felt. 

“I actually feel kind of empowered and feel like I live a freer, happier life when I don’t have secrets. I’m quite happy to shine a light on the negative moments in my life,” Thomas said. 

Photo Source: On Top Magazine

Thomas was recently tapped by ViiV Healthcare and the Terrence Higgins Trust to serve as the spokesman for Tackle HIV, which is a new public awareness and education initiative. 

Said Thomas about the Tackle HIV campaign, "Since finding out I have HIV I have learnt so much about the virus and about how it affects people living with it. HIV is still misunderstood and because of that stigma still exists. I have heard first hand stories of how deeply this stigma and self-stigma affects people living with HIV and I am determined to change this. That’s why I have started the Tackle HIV campaign."

Learn more at https://tacklehiv.org.

Celebrity transparency about HIV status has increased in the past three decades, which mirrors the general public. The announcements by celebrities, like Thomas, demonstrates that more needs to be done to combat HIV-related stigma. But every positive message (no pun intended) chips away at the negative attitudes still persisting today among some people. Thomas sharing his HIV journey, like the stories shared by many of our family, friends, and neighbors, serve as a reminder that an HIV-positive diagnosis and living a full, healthy and successful life don't have to be mutually exclusive. 

References:

• Godfrey, C. (2020, June 08). Gareth Thomas on coming out as HIV positive: 'It was my right to tell my family – not somebody else's'. Retrieved from https://www.theguardian.com/sport/2020/jun/08/gareth-thomas-on-coming-out-as-hiv-positive-it-was-my-right-to-tell-my-family-not-somebody-elses

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. 

The Quest for an HIV Cure Looms Large

By: Sarah Hooper, intern, ADAP Advocacy Association, and senior at East Carolina University

Earlier this year, it was revealed by the National Institutes of Health (NIH) that it would pump $14.6 million into a HIV research program headed up by the University of Southern California (USC) and the Fred Hutchinson Cancer Research Center. The aim of the research program is to eliminate the need for HIV patients to take daily medication, and to hopefully achieve an overall cure. 

Photo Source: RT News App

According to End Points News, the therapy would allow a patient’s own stem cells to fight the HIV infection and allow them to make new immune cells when the infection is fought. (End Point News)

“The approach was inspired by three patients who appear to have been cured of the virus — all of whom received blood stem cell transplants from donors who carried a mutation in the CCR5 gene. One of them, dubbed the “Berlin patient,” had been off antiretroviral drugs from 2007,” End Point News said.

In 2006, Timothy Ray Brown (also known as the Berlin patient) was diagnosed with myeloid leukemia. In 2007, Brown received two bone marrow transplants, and halted his HIV medications in the process (ScienceMag). Since the bone marrow transplant, researchers have only found traces of HIV, none of which is able to replicate in Brown’s system- effectively curing him of HIV.

NIH’s new research program is using similar technology in its search to find a cure for HIV. By using stem cells to fight the disease, the need for medication is much lesser, as one’s own body can fight HIV. However, the process Brown went through to fully cure himself of HIV is intense.

“The first is the process of conditioning, in which doctors destroyed Brown’s own immune system with chemotherapy and whole-body irradiation to prepare him for his bone marrow transplant. His oncologist, Gero Hütter, who was then with the Free University of Berlin, also took an extra step that he thought might not only cure the leukemia but also help rid Brown’s body of HIV. He found a bone marrow donor who had a rare mutation in a gene that cripples a key receptor on white blood cells the virus uses to establish an infection. The third possibility is his new immune system attacked remnants of his old one that held HIV-infected cells, a process known as graft versus host disease,” ScienceMag said. 

In September 2020, Brown passed away from his cancer, and the HIV community mourned his loss.

Photo Source: HIV Plus Magazine

The search for a cure to HIV has been ongoing since the virus was discovered. Treatment with antiretrovirals has been a massive step away from a death sentence and towards a normal life for HIV patients. The issue with the HIV virus is it can be hidden in cells while being suppressed by current HIV treatment. The only HIV patients who have been successfully cured of the virus were also undergoing intense treatments for a separate cancer diagnosis, according to ViiV Healthcare. 

These patients underwent a bone marrow transplant in which an HIV free bone marrow was placed in their body, which is a high-risk surgery as is. 

“While their treatments were extremely high risk and not amenable to wide scale implementation, these instances of cure bring hope of what is possible in our efforts to end the HIV epidemic,” ViiV Healthcare said. 

The NIH initiative to eliminate the need for daily medication is an incredible effort made available by years of previous research and effective treatment. If successful, this effort could change the lives of millions of HIV patients in the United States and around the world. 

References:

• A cure for HIV the end goal. (n.d.). Retrieved September 17, 2020, from https://viivhealthcare.com/en-gb/our-stories/innovation-hiv-science/towards-a-cure-exploring-cure-and-remission-in-hiv/
• DeFeudis, N. (2020, September 03). Researchers teamed up to develop a 'three in one' HIV treatment - and the NIH is throwing in $14.6M. Retrieved September 16, 2020, from https://endpts.com/researchers-teamed-up-to-develop-a-three-in-one-hiv-treatment-and-the-nih-is-throwing-in-14-6m/
• Jon Cohen Sep. 25, 2., Meredith Wadman Sep. 16, 2., Adrian Cho Sep. 15, 2., Ian Morse Sep. 14, 2., Eli Cahan Sep. 14, 2., Scott Waldman, E., . . . Rebekah Tuchscherer Aug. 26, 2. (2017, December 10). How did the 'Berlin patient' rid himself of HIV? Retrieved September 16, 2020, from https://www.sciencemag.org/news/2014/09/how-did-berlin-patient-rid-himself-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.

How Drug Imports Can Endanger Patients

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

I was diagnosed with HIV just shy of my 30th birthday. That day, everything changed. I was apprehensive about my prognosis, my treatment plan, and my ability to live a normal life.

That was me in 2001 (pre-Dx)

Fortunately, medical advances have turned HIV from a certain death sentence into a manageable condition. Still, like all Americans who depend on complex medications to stay healthy, I worry about high drug prices, and this concern has only intensified amid the COVID-19 pandemic. Especially since some of the proposed "solutions" to high drug prices would put patients' health at risk.

Just recently, the Trump administration announced that it would allow states to import prescription medications from Canada with the aim of saving money for consumers. Doing so, though, could expose millions of Americans to counterfeit drugs, while achieving little in the way of savings.

I've seen firsthand how importation schemes can put patients at risk.

Shortly after learning I was HIV-positive, I ordered my anti-retroviral drugs from an online Canadian pharmacy. For two months, I received medications via mail without ever wondering where they were sourced or whether they contained the active ingredients I needed to keep me alive.

Then my doctor intervened. She told me that drugs purchased through online storefronts are often adulterated or counterfeit—in fact, the global trade in fake medicines is a $30 billion-a-year business. Unknowingly, I had been rolling the dice with my health.

There are two types of counterfeit drugs. The first contains potentially deadly substances—everything from arsenic to antifreeze. The second contains few, if any, active ingredients. Though pills in the latter category don’t contain actual poisons, they can be just as deadly.  Anti-retroviral drugs have to be taken exactly as prescribed; missing even a few doses can allow the virus to reemerge.

There is no mechanism in place to regulate the quality of drugs imported by American patients. A senior official at Health Canada explicitly told the US surgeon general that her agency "does not assure that products being sold to U.S. citizens are safe, effective, and of high quality." The FDA, meanwhile, plainly states that it "cannot ensure the safety and effectiveness of drugs that it has not approved."

Photo Source: PolicyMed.com

Moreover, drugs purportedly from Canada could come from anywhere. A 2017 study by the National Association of Boards of Pharmacy found that three-quarters of online pharmacies claiming to sell Canadian drugs actually sourced their products from places like India, Singapore, and Hong Kong, all major suppliers of counterfeits. Back in 2005, the FDA reported that only 15% of imported drugs marketed as Canadian actually originated in Canada. The other 85% came from "27 countries around the globe," meaning that many likely didn't go through rigorous quality control.

It's relatively easy to get hoodwinked by online pharmacies that promise quality drugs at bargain prices. CanadaDrugs.com, for instance, started out in 2001 as a seemingly reputable online pharmacy. But soon it turned to distributors outside of Canada to secure medicines. In 2018, a U.S. court prosecuted and fined the company for selling fake cancer drugs to American doctors.

Counterfeiters have shown they are willing to prey on people living with all kinds of diseases, including HIV. In 2011, a British regulatory agency discovered that two fake HIV medications had infiltrated the market and were circulating among patients.

Opening the door to drug imports would allow that kind of thing to happen here, putting us all at risk. And it's not even certain that legalizing importation would cut costs. The FDA acknowledges that it is "unable to estimate the cost savings" from President Trump's new plan. Former FDA Commissioner Scott Gottlieb wrote that "when importation of foreign drugs is done under a regulated scheme, it really wouldn't save money."

Right now, Americans are anxious enough about our health. Let's not add drug imports to our list of things to worry about.

This opinion piece was also published in the November 1st edition of the International Business Times.

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.

Biden & Science Win; Trump & Stigma Lose

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

On Saturday, November 7th at 11:25 AM Eastern Standard Time, people living with HIV/AIDS breathed a collective sigh of relief as the Associated Press called the 2020 Election, and recognized Joseph R. Biden, Jr. as the 46th President-Elect of the United States. In that very moment, science bested stigma. The electoral landslide turned the page on a dark chapter in this nation's history. As a 501(c)(3) nonprofit organization the ADAP Advocacy Association stayed neutral during the election for obvious reasons, but we welcomed the news with open arms!

Soon to be gone are Donald J. Trump's constant attacks on vulnerable populations disproportionately impacted by HIV/AIDS - such as the LGBTQ community, Muslims, racial & ethnic minorities, and immigrants. They will be replaced by compassion, empathy, and a keen understanding that sound public health policies are rooted in science.

Since 2016, HIV-related stigma was fueled by government sanctioned healthcare discrimination, eliminating most non-discrimination protections, and the discharge of military service members living with HIV/AIDS, only naming a few. Not to mention there were numerous misguided public health changes harmful to the HIV community driven by politics rather than sound policy, such as drug importation, pro-insurance co-pay accumulator regulations, raiding Ryan White funding for immigrant deportation, and proposed budget cuts. And don't forget how Trump’s anti-FDA Tweets undermine public health!

And that doesn't even consider the nearly 250,000 deaths due to COVID-19 resulting from Trump's lack of presidential leadership. But our nation's poor response to the coronavirus didn't come as any surprise considering that Trump tapped anti-LGBTQ, anti-science Vice-President Mike Pence. After all, Pence was the same guy who, as Indiana's Governor, oversaw one of the Hoosier State’s worse HIV outbreaks in the state's history.

But all of that darkness is about to change...

Starting on January 20, 2021, a brighter future awaits the LGBTQ community under the Biden-Harris Administration's commitment to advance equality. This change alone is significant, considering how new HIV-infections continue to disproportionately impact much of the LGBTQ community. Since the 1990s, President-Elect Biden has been a strong supporter of the Ryan White HIV/AIDS Program and its AIDS Drug Assistance Program, as well as a staunch ally of President George W. Bush's President’s Emergency Plan for AIDS Relief (PEPFAR). 

Jirair Ratevosian, M.P.H., who served as the Legislative Director for HIV/AIDS Caucus Co-Chair Rep. Barbara Lee, summarized Biden's support for HIV-related causes (The Body, 2020):

"The vice president’s prioritization of HIV/AIDS programs continued after his Senate career. The Obama-Biden administration delivered major advances in prevention and treatment efforts for people living with HIV. The Affordable Care Act (ACA) assisted Americans living with HIV by eliminating preexisting conditions and provided them with much-needed health insurance. In addition, the Obama-Biden administration eliminated the entry ban for tourists and immigrants living with HIV; ensured HIV testing would be covered under the ACA; implemented a comprehensive National HIV/AIDS Strategy; and directed federal agencies to examine the intersection of HIV with violence against women and gender-related health disparities. The programs under ACA had an important impact on addressing HIV prevention and treatment in communities of color."

Biden has made his intentions clear: "You deserve a partner in the White House to fight with conviction and win the battles ahead. Together we’ll pass the Equality Act, protect LGBTQ+ youth, expand access to health care, support LGBTQ+ workers, win full rights for transgender Americans, recommit to ending the HIV/AIDS epidemic by 2025, advance LGBTQ+ rights around the globe, not just at home" (Artavia, 2020). 

Women - especially women of color - will also have a brighter future under the Biden-Harris Administration. Vice-President-Elect Kamala Harris will be well-positioned to ensure more is done for African American women and Latina women, who as we all know are disproportionally impacted by HIV/AIDS in the United States.

Biden's record on public health isn't perfect, but it is far better than what we've witnessed the last four years. The ADAP Advocacy Association stands ready to aid the Biden-Harris Administration's efforts to return our nation's HIV epidemic response to science-based policies.

References:

• Artavia, David (2020, September 25). Joe Biden Recommits to Ending HIV, Passing Equality Act, LGBT+ Rights. Out. Retrieved online at https://www.out.com/politics/2020/9/25/joe-biden-recommits-ending-hiv-passing-equality-act-lgbt-rights. 
• Ratevosian, Jirair (2020, July 27). Joe Biden Is Our Strongest Option to End the HIV Epidemic. The Body. Retrieved online at https://www.thebody.com/article/joe-biden-strongest-option-to-end-hiv-epidemic.

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. 

HIV & COVID-19 in Southern Black Communities

By: Venton C. Hill-Jones, Chief Executive Officer, Southern Black Policy & Advocacy Network

It is no secret that Black Americans in the U.S. South lead our nation in diagnoses and deaths caused by HIV, cancer, diabetes, hypertension, obesity, high cholesterol and lack of mental health resources. Knowing this, it came as no surprise that the Black community would also lead the nation per capita in diagnosed and undiagnosed cases of COVID-19, as well as the virus’ mortality rate. According to amfAR, The Foundation for AIDS Research, Black communities are facing a disproportionate impact of COVID-19 in the U.S. South. 

In a May 2020 study conducted by amfAR, it was reported that in the United States: “COVID-19 diagnoses and deaths increased in counties with a greater proportion of Black residents. While disproportionately Black counties constitute only 22% percent of U.S. counties, they account for 52% and 58% of COVID-19 cases and deaths, respectively. Ninety-one percent of disproportionately Black counties are located in the Southern U.S.” 

During the COVID-19 pandemic, SBPAN has worked to utilize social media and digital engagement (web meetings, virtual conferences, etc.) to continue the dialogue with Black public health and community leaders representing, and serving, these Southern Black communities. Through our engagement, we have found that many leaders feel that, prior to COVID-19 pandemic, conversations and actions surrounding the overarching state of public health in the South were limited. As a result, Black communities living in the U.S. South face a disproportionally high number of health disparities directly linked to the social and economic barriers rooted in the unique history of racism, religion, segregation, and slavery in the U.S. South. Because of this environment, the U.S. South remains the epicenter of health disparities that continue to reduce the morbidity and mortality of Black communities living in this part of the United States.

As we navigate the COVID-19 pandemic, social unrest and the ongoing call for racial equity in the South, we must focus our conversations and mobilization efforts on addressing intersecting epidemics and social challenges. Now is not the time to regress in having open dialogues, showing human solidarity and human perseverance, nor showing collective support for our society. Look at how promptly we bonded together to administer personal prevention essentials (PPE), enacted federal/state legislations and local ordinances to assist families and individuals with food, housing, and supplemental income that have been financially impacted, or ensured everyone that wants to get tested has the unencumbered availability to do so. Now imagine if we utilized those same strategies, focus, and fortitude and applied them to the same public health emergencies that will remain once COVID-19 is gone?  

People living with HIV/AIDS in the Black community mirror the same external barriers that require the exact same meaningful impact that we have responded to COVID-19 with. There are basic human right essentials including employment and housing that we need all local municipalities to pass anti-discrimination ordinances against. Only through solidarity and perseverance can we collectively make further progress in addressing health disparities for southern Blacks."

About the Southern Black Policy & Advocacy Network. SBPAN is a non-profit 501(c)(3) organization that was created in 2018 to improve health, social, and economic conditions facing Black communities living in the U.S. South. SBPAN's mission is to improve health outcomes and reduce social, and economic disparities impacting Black communities living in the U.S. South through training, education, advocacy and mobilization. SBPAN is committed to building and strengthening programs and partnerships focused on improving the health and quality of life for diverse populations of Black southern communities in the U.S., specifically those living at the intersection of marginalized Black communities including, but not limited to those who are same gender loving (SGL), lesbian, gay, bisexual, transgender (LGBT), youth, women, and persons over the age of 55. Donate to Southern Black Policy and Advocacy Network.

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. 

COVID-19 is Exacerbating Existing Epidemics

By: Connie Reese, Founder & Executive Director, Simply Amazing You Are

As a domestic violence survivor, and advocate for survivors of domestic violence and intimate partner violence ("DV/ IPV"), it is important to recognize that people are less likely (and less able) to seek help. Isolation by an abuser or shame often prevent it. The COVID19 public health crisis has left even some of the longest standing integrated courts, designed to deal with protection orders and victim assistance, scrambling to cope with modernizing, introducing technology and restructuring interpreter services. 

In unincorporated Miami-Dade, DV/IPV cases increased nearly 20 percent in April 2020, during the COVID "shelter-in-place" orders (The Women’s Fund Miami-Dade, 2020). While amazing local organizations, like the Women's Fund Miami-Dade, have focused awareness campaigns, it has been the experience of our organization, Simply Amazing You Are ("SAYA"), that these campaigns are most effective for those already connected to services with mandated reporters and close relationships with systems of justice. 

Photo Source: USC Suzanne Dworak-Peck School of Social Work

Due to lack of investment in stable, transitional housing (MiamiDade.gov lists only 2 transitional housing providers and 2 emergency shelters – of which congregate living risks in the time of COVID make them even less safe), much of the community needing the most help are at a loss or the system doesn't move fast enough to provide adequate interventions and in some cases are now no longer accessible at all due to victim/survivors' lack of broadband access. As much as some pundits bemoaned smartphones as a tool subsidized by anti-poverty programing, for many of my clients, those phones are the difference between life and death by way of a simple internet connection. 

Complicating considerations for at risk communities, the Center for Disease Control & Prevention ("CDC") recognizes "...studies suggest that IPV can be both a risk factor for HIV, and a consequence of HIV" (CDC, 2014). With Miami-Dade's historically high rate of new HIV diagnoses, reduced access for community-based HIV testing, and lack of investment in areas like Brownsville and Liberty City as a matter of geographic segregation and ghettoization, the area is poised to be an example of how public policy fails to address intersections of health.

Advocates and funders would do well to consider the most good can be achieved by making remarkable investments in local community-based organizations, rooted in neighborhood-oriented community outreach and "shoe leather" service provision. Much of the local community can't meaningfully enjoy the temporary flexibility for telehealth and linkage to care and services because the very entities providing these services were not prepared or supported in becoming prepared for such modernizations. And Miami is not unique.

Across the nation, deeply impoverished neighborhoods experience the same barriers to care.

We are quickly running out of time to change the inevitable course of increased domestic violence, deaths from domestic violence, more cases of COVID-19, more HIV diagnoses, less care, and less public trust in these entities meant to serve us and keep us safe. That's the core of this need, as our systems show just how fragile they are, as we see existing disparities become exacerbated, communities getting fewer of their needs met will ultimately come to trust us, all of us, less and less. The time to act, the time to make unprecedented, bold moves, is now.

About Simply Amazing Your Are. SAYA is an empowerment focused intimate partner violence prevention and intervention non-profit organization in Miami, FL. SAYA's programming includes direct assistance like escape planning and protective order assistance, as well as policy advocacy campaigns, referral for support services, and linkage to care and victim services navigation. SAYA currently relies on a word-of-mouth model in order to ensure the safety of our clients. Through the COVID pandemic, SAYA has also partnered with Panera Bread end night donations to provide to IPV survivors facing homelessness or the risk of homeless. Donate to Simply Amazing You Are.

References: 

• Centers for Disease Control & Prevention (February 2014). Intersection of Intimate Partner Violence and HIV in Women. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/violenceprevention/pdf/ipv/13_243567_green_aag-a.pdf?response_type=embed#:~:text=Studies%20of%20HIV%2DPositive%20Women,and%20a%20consequence%20of%20HIV.
• Women’s Fund Miami-Dade (2020, July 17). The Women’s Fund Miami-Dade Launches Domestic Violence Awareness Campaign. PRWeb.com. Retrieved online at https://www.prweb.com/releases/the_womens_fund_miami_dade_launches_domestic_violence_awareness_campaign/prweb17265119.htm. 

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. 

During COVID-19, Strength is Knowing that its Okay Not to be Okay

By: Khadijah Abdullah, Founder & Executive Director, Reaching All HIV+ Muslims in America

In May, my Uncle passed away from COVID-19. Grief hit our family hard, especially his youngest daughter, my cousin Erica. She had just lost her older brother to a heart attack a year prior. She felt the weight of their deaths on her shoulders. 

Unfortunately just a couple weeks ago, on October 9th she unexpectedly passed away as well. She leaves behind a 4 year old son who is a cancer survivor and requires special care. As you can imagine my family is devastated. 

Grief hits differently when it is someone you love. We never know the day nor the hour, but we know we will all die someday. But when it happens, it still hurts.

When COVID-19 first hit, many of us did not understand its severity until we lost someone close and/or the numbers increased drastically over a short period of time. The news constantly fed us information about COVID-19 and many retreated to their homes and sealed their front doors shut.

But what about Black, Brown and Indigenous people?

We are hit the hardest by COVID-19.

According to the Centers for Disease Control and Prevention (CDC), factors that contribute to risk of us getting sick with COVID-19 are: discrimination, healthcare access and utlization, occupation, educational, income, wealth gaps, and housing. 

Many of us do not have the luxury of sheltering in place. If we did, we would not be able to eat or feed our families. We have to keep a roof over our heads. We can’t afford to just simply not work. We don’t have the luxury of wealth. Essential workers often times falls on the backs of Black, Brown and Indigenous Folx.

COVID-19 has had and continues to have an impact on many families across the world, including my own. In the US alone, over 8 million people tested positive for COVID-19 thus far. As the Executive Director of Reaching All HIV+ Muslims In America (RAHMA), I have seen the effects it has on those we serve as well, including our team. Moving to a virtual world without warning has caused Zoom fatigue and attempting to find balance in a constantly changing world. Mental health is of the utmost importance and we just strive to do the best we can. Sometimes this looks like taking time off to regroup and that’s okay. 

Strength is knowing that its okay not to be okay. We are human.

We have also taken a few steps to provide relief and support to Black, Indigenous and People of Color (BIPOC) affected by COVID-19. In recognition of National Faith HIV & AIDS Awareness Day (NFHAAD), we led a town hall titled: “Get out and Vote: HIV & COVID-19 are on the Ballot.” This town hall covered the importance of voting, how our lives depend on it and why we must appoint elected officials who actually value our lives. We invited speakers from the Black AIDS Institute, Positive Women’s Network, Dr. Abdul El-Sayed and more.

Due to my personal experiences with COVID-19 and wanting to help amplify prevention efforts as much as I can, I have also become a Faith Ambassador with the COVID-19 Prevention Network. Our goal is to collaborate with BIPOC faith communities, address the effects COVID-19 has on us, disparities, prevention efforts and how we can respond effectively.  

COVID-19 is not going anywhere anytime soon. This is a harsh reality we have to face. In order for us to come out of this alive, we have to take care of self. COVID-19 is an invisible force to be reckoned with and we have to be equipped with knowledge to defend ourselves. 

Our lives depend on it. 

About Reaching All HIV+ Muslims in America: RAHMA addresses HIV, AIDS, Female Genital Mutilation/Cutting (FGM/C), Sexual Health and Gender-Based Violence (GBV) in faith communities through education, advocacy, and empowerment. Their programs include a retreat for HIV+ Muslims and their allies, sexual health & HIV trainings and development og a virtual FGM/C toolkit for survivors and health care providers, created in collaboration with the George Washington University, Milken School of Public Health hosted at https://fgmtoolkit.gwu.edu. RAHMA is also the founder of National Faith HIV & AIDS Awareness Day, which unites Muslim, Christian, Jewish, Buddhist, Sikh, Hindu and Baha'i faiths to take a stand against stigma in their congregations and raise awareness on HIV and AIDS. Donate to Reaching All HIV+ Muslims in America.

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. 

Love in the Time of COVID-19

By: Riley Johnson, Executive Director, RAD Remedy

As many readers may know, COVID-19 is a novel coronavirus for which there is currently no vaccine available in the United States. But what folks may not know is that many state public health departments managing COVID-19 do not collect data on sexual orientation and gender identity, meaning there is minimal public health data available about the impact of COVID-19 on transgender people, including trans folks living with HIV. Like non-pandemic times though, trans organizations are able to provide an understanding of not only the ways in which trans folks are impacted but also how grassroots mutual aid efforts continue to sustain us.

Trans Lifeline recently reported that between March and July 2020, they experienced a 40% increase in calls, and that number continues to climb (Fowers, 2018). Outside of COVID-19, trans people already experienced mental health issues at nearly four times the rate of the general population (Wanta, 2019). In addition, trans people can face increased risk for COVID-19 due to several issues: trans communities’ higher rate of smoking - 50% higher than the general population (National LGBT Cancer Network, 2020) - access to care barriers leave us less likely to get medical care, and existing health disparities mean more of us live in a state of compromised health, which can leave us more vulnerable to COVID-19 infection. Trans people also at times use binders and/or corsets which, while helpful presenting aids, can restrict breathing. Trans folks have also faced unexpected consequences of hospitals and surgical centers trying to cope with COVID-19. Transition surgeries have been classified as non-emergency and have been cancelled after trans patients have already waited months or even years, causing even more stress and depression. Trans Lifeline counselors also report many callers have talked of being forced to quarantine with families or partners who were unsupportive or abusive. Prior to COVID-19, many trans people engaged in sex work and street economies due to stigma and underemployment, and with the onset of the pandemic, many are continuing to do so to meet survival needs despite the increased risk of COVID-19 transmission due to lack of social distancing. And not insignificantly, many trans people are also reporting an increase in misgendering due to the use of masks for COVID-19, which, while helpful for prevention, may limit gendered visual cues such as facial hair and make-up.

At the same time, trans folks also have been targeted politically like never before, including a reinstatement of the trans military ban, an attempt to remove nondiscrimination protections in Section 1557 of the Affordable Care Act which would allow medical personnel to refuse to care for trans patients, proposed regulations that would all but ban LGBTQ asylum seekers, and proposed modifications to the Housing and Urban Development’s Equal Access Rule that would require trans folks who are houseless to stay in shelters associated with their assigned sex at birth. To be honest, dear reader, all of this oppression on top of the pandemic has been a bit much even for me.

So I began to ask myself - what does love and resilience look like in a time of COVID-19?

From a self-care and community care perspective, many trans people are looking after each other by reminding each other to unplug from social media and news cycles, to drink water and eat, and sharing quality goat and puppy content and curbside drop-offs of food. These small graces remind us that while the pandemic is ongoing and the world seems to be on fire, there is goodness, kindness, and adaptation too. Like we have for decades, trans people are still thriving and resilient in the face of uncertainty. On September 2, 2020, a federal district court issued an injunction which immediately blocks the Department of Health and Human Services’ attempt to allow discrimination against LGBTQ people on religious grounds. Grassroots mutual aid projects have also blossomed all over the U.S., including the TGNC Peoples COVID Crisis Fund of Louisiana, the Okra Project, and the Heavenly Angel Fund which assists Black trans women in getting tested for COVID-19 and provides care packages for those who have been tested. These are just a sample of the many efforts by and for trans people to uplift each other and help those who need it most. For a truly fantastic deep rabbit hole of mutual aid during COVID-19, check out COVID-19 Collective Care (http://bit.ly/covid19collectivecare). As Vivian Topping, a peer support facilitator at Trans Lifeline puts it, “Trans folks push really hard to support our people and be resilient. There’s still beauty. There’s still joy. There’s still a life to keep looking forward to .”

I’d like to leave you with a quote from Dr. Lourdes Ashley Hunter, Executive Director of Trans Women of Color Collective: “Every breath a trans person takes is an act of revolution. Everyday, you will wake up in a world designed to destroy you, invalidate you and tell you that you don’t belong and that you have to assimilate to be accepted. Everyday you will also wake up with great purpose to dismantle that shit. Ashé.” Breathe deeply, sanitize, and mask up, friends. Whether it’s a pandemic or policy designed to oppress us, we are resolute, resourceful, and stronger than we know. 

About RAD Remedy: RAD Remedy is a national grassroots organization dedicated to connecting trans, gender non-conforming, intersex, and queer (TGIQ) folks to accurate, safe, respectful, and comprehensive care. The Referral Aggregator Database (RAD) is a comprehensive and nationally-collaborative database that combines the referral lists of trusted community organizations and the detailed reviews of TGIQ clients. In addition to the organization's database activities, RAD Remedy provides community-informed policy and practice guidance and consulting to organizations, agencies, and individual providers looking to help TGIQ communities thrive. Donate to RAD Remedy.

References:

• Fowers, Alyssa, and William Wan (2020, August 18). "The volume has been turned up on everything': Pandemic places alarming pressure on transgender mental health. Washington Post. Retrieved online at https://www.washingtonpost.com/health/2020/08/18/coronavirus-transgender/?arc404=true.
• National LGBT Cancer Network (2020). Coronavirus Information. Retrieved online at https://cancer-network.org/coronavirus-2019-lgbtq-info/.
• Wanta, Jonathan, et. al. (2019). Mental Health Diagnoses Among Transgender Patients in the Clinical Setting: An All-Payer Electronic Health Record Study. Transgender Health. Retrieved online at https://www.liebertpub.com/doi/pdf/10.1089/trgh.2019.0029.

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. 

COVID-19's Impact on Older Adults Living with HIV & Long-Term Survivors

By: Tez Anderson, HIV Long-Term Survivor & Founder of Let's Kick ASS—AIDS Survivor Syndrome 

COVID-19 is having a significant impact on the social and mental health of older adults with HIV and long-term survivors, according to a recent study by HIV+Aging Research Project—Palm Springs (HARP-PS).

Half of the HARP-PS study participants reported increased frustration, boredom, sleep disruptions, and not getting enough exercise. There’s no doubt that some of the stress is from social distancing on a population already facing a crisis of isolation. 

But there is something else going on. For months, I’ve been beating myself up because the simplest tasks seem insurmountable. I can’t seem to get motivated or to stay focused. I thought it was just me, so I asked around. I am not the only one having these problems. Everyone I talk with is struggling with the same issues.

While there are very few similarities between AIDS and COVID 19, but another deadly pandemic triggers old trauma from another time when we faced another inescapable invisible enemy. When stress has no endpoint, it is more challenging to cope, mentally, and physically. In the early AIDS epidemic, we could at least forge a community response. We could gather and demand action. Now we are told to keep our distance because social distancing is unique to COVID 19. It is also more contagious so being in a group is dangerous. Zoom calls have replaced face time, and while it is the only option, the difference of being behind a screen is a poor imitation of being together.

AIDS Survivors Summit - 2014

The threat of COVID 19 is enormous and probably foremost on our minds. But there is more weighing on all of us. We are weeks away from the most critical election in history.

The threat of COVID 19 is against the backdrop of the rage we feel that COVID 19 did not have to be this bad. America’s response to the coronavirus pandemic is the worst in the world because of a lack of leadership. We have an anti-science president who failed to create an early cohesive national strategy to bend the curve. Other nations did it, and are living is more tolerable. Trump politicized the virus, mocked mask-wearing as a sign of weakness, and undermined public health experts’ recommendations. The current occupant of the White House uses COVID 19 to divide an already splintered nation. We have audio proof that the president knew how deadly it COVID 19 was and downplayed the danger. He lied instead of lead.

We all want things “to go back to normal” to a time before COVID 19 turned our world upside down. We need to accept the reality that COVID 19 will be a threat for years. The presidential promises of “it will end soon” and that we will have a vaccine before election day is more lies. 

For the sake of our sanity, we must ignore everything Trump says. Instead, listen to the public health expert we trust. Dr. Anthony Fauci is the only reliable source of information for navigating this pandemic. In a recent interview, Fauci corrected Trump’s lie, “If you’re talking about getting back to a degree of normality before COVID, it’s going to be well into 2021, towards the end of 2021.” 

This coronavirus rollercoaster we’re on has no end in sight. Those of us aging with HIV will be the last ones to get off the COVID-19 rollercoaster because we do not want to risk our lives.

Not Our First Pandemic was the 2020 theme for HIV Long-Term Survivors Awareness on June 5. This one is proving to have resonance. Coming together has always been our strength. Now we are forced to gather virtually. Let’s Kick ASS has a closed, moderated Facebook Group called the HIV Long-Term Survivors League, where we have conversations about these extraordinary times. It is a chance to converse with other survivors in a safe space. 

Approximately 1.2 million people are living with HIV and AIDS in the US. Sixty percent of HIV-positive women and men over age fifty and 25 percent have lived with the virus before 1996. That’s 720,000 who are the first-generation aging with HIV and 300,000 HIV longest-term survivors facing deadly stress. A population who mostly live in poverty with social networks shredded by AIDS and aging. 

As we have for decades, we must persevere, know that we are not alone, and are an untapped resource. Do not allow discrimination based on age, or ageism, rob us of our voices. And be sensible about the threat of COVID 19. We’ve survived with HIV for decades let’s ensure we take all precautions to prevent catching COVID 19. Wear a mask, wash your hands, keep your physical distance but remain emotionally connected even if it is virtual. And vote like our lives depends on it.

These are surreal times, but you are not alone.

About Let's Kick ASS — AIDS Survivor Syndrome: Let's Kick ASS — AIDS Survivor Syndrome has been empowering HIV Long-Term Survivors to thrive since 2013. They are an all-volunteer, grassroots movement, united in compassion, committed to action, and insisting on visibility. Let's Kick ASS started by and for people living longest with HIV/AIDS to address an unmet need — addressing the present-day psychosocial ramifications of living in the aftermath of the early AIDS pandemic. They are the originator and lead sponsor of the June 5th "HIV Long-Term Survivors Awareness Day" #HLTSAD. Donate to Let's Kick ASS — AIDS Survivor Syndrome.

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. 

COVID-19's Impact on Connecticut's Latinos

By: Madeline Rodriguez, Executive Director, Latino Community Services

According to the Connecticut Department of Public Health HIV Surveillance Program, Latinos are disproportionally impacted by HIV-infection in the state. Nearly half of the Latinos living with HIV/AIDS in Connecticut are now over the age 50, but our Latinx generation is being hard hit by new diagnosis. (CDPH, 2020)

Latino Community Services, Inc. (LCS) was founded in 1986 as Latinos/as Contra SIDA in response to the need for culturally and linguistically competent services for Latinos in Hartford who were infected with and affected by HIV/AIDS.  The mission of LCS is to reduce the further spread of HIV/AIDS among Latinos and other at-risk populations and improve the quality of life and health of people living with HIV/AIDS. The clients at Latino Community Services come from all walks of life and are diverse in age, race and gender. LCS is a devout ally of the LGBTQI community and staff is dedicated to providing the best possible services so that everyone feels safe and welcomed.

Many of the individuals we serve have plenty of common ground. From battling with depression and anxiety to living with HIV/AIDS, and/or Hepatitis C and other health issues. Our clients, who are mainly black and brown people, are consistently disproportionately burdened with poor outcomes across these health conditions which are now layered by COVID-19. 

These individuals many times rely on human interaction such as our support groups; however since the pandemic, our support groups are now held virtually resulting in clients not engaging consistently .  The HIV/AIDS virus compromises the body's immune system which allows for common colds to be magnified due to the weakening of the clients' defense system (immune system). Meaning, a person who lives with HIV/AIDS has a greater chance of contracting coronavirus, hence many of our clients resorting to complete isolation as a precautionary measure. In turn, this has brought to light the impact that mitigation strategies such as social distancing are having on their health, mental health, access to HIV treatment and basic needs. 

As one strategy to bring some relief to the community,  LCS has been delivering food to the individuals who have self-quarantined. The organization has experienced a significant influx of families and individuals utilizing the service particularly due to being unemployed with by lay off or the business being shut down permanently additionally, homelessness that was partially due to the pandemic. A survey was conducted which concluded that many of the individuals utilizing the food pantry identified as black and brown people with underlying health issuesm mainly HIV/AIDS. LCS' food pantry also provides other basic needs essentials which include but are not limited to toilet paper, shampoo & conditioner, body soap, laundry detergent and pet food.Since March of 2020, Latino Community Services have served 419 unduplicated families.  Lastly, recent funding has afforded Latino Community Services with the resources to provide personal protective equipment.

About Latino Community Services: Founded in the City of Hartford, CT, in 1986, LCS provides culturally responsive care and prevention services to people living with HIV/AIDS and their communities. Beginning it's operations in the height of the HIV/AIDS epidemic,  LCS is the only Latino led organization with it's experience providing direct services to marginalized PLWH and other underrepresented populations of color throughout Hartford, Middlesex and Tolland Counties. Latino Community Services recognizes the challenges posed by COVID-19 and the impact that the virus has had worldwide. Throughout these challenging times, they remain committed to their clients and the public as they continue to adapt and evolve throughout the outbreak and recovery phases. Donate to Latino Community Services.  

References:

• Connecticut Department of Public Health HIV Surveillance Program. Rate of Newly Diagnosed HIV Cases by Race/ethnicity, Connecticut, 2014-2018. Retrieved online at https://portal.ct.gov/-/media/Departments-and-Agencies/DPH/AIDS--Chronic-Diseases/Surveillance/statewide/CT_rate_hiv_race.pdf.
• Connecticut Department of Public Health HIV Surveillance Program. Hispanic/Latino People Living with HIV Infection by Sex, Race, and Risk, Connecticut, 2018. Retrieved online at https://portal.ct.gov/-/media/Departments-and-Agencies/DPH/AIDS--Chronic-Diseases/Surveillance/statewide/CT_plwhivaids_table_cur_hispanic.pdf.
• Connecticut Department of Public Health HIV Surveillance Program. Rate of Newly Diagnosed HIV Cases by Age at Diagnosis, Connecticut, 2014-2018. Retrieved online at https://portal.ct.gov/-/media/Departments-and-Agencies/DPH/AIDS--Chronic-Diseases/Surveillance/statewide/CT_rate_hiv_age.pdf. 

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.  

COVID-19's Impact on Rural Health Services Providers

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

In partnership with Cardea and TruEvolution, Community Education Group (CEG) is spearheading an effort to learn how COVID-19 is impacting Rural Health Services Providers (RHSPs) so they can better facilitate conversations with policymakers and advocate to expand access to resources to support client care. COVID-19 is presenting a unique set of challenges in rural communities as local providers try to tackle HIV, viral hepatitis, and substance use disorder. 

Our Vlog summarizes the work being done by CEG to address these disparities in rural communities.

To view the Vlog, visit https://www.adapadvocacy.org/urls/CANN_Video-Blog.mp4.

About Community Education Group. The Community Education Group (CEG) is a 501(c)3 not-for-profit organization working to eliminate disparities in health outcomes and improve public health in disadvantaged populations and under-served communities. CEG accomplish this by conducting research, training community health workers, educating and testing people who are hard to reach or at risk, sharing our expertise through national networks and local capacity building efforts, and advocating for practical and effective health policies that lead to social change. CEG has offices in both Washington, DC, and Shepherdstown, WV, and has recently partnered with TruEvolution, Inc. (Riverside, CA) to found the Rural Health Service Providers Network which advocates on behalf of organizations providing essential services to clients living in rural America. Donate to Community Education Group.

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.  

Black, Gifted & COVID-19 Free

By: Guy Anthony, President/CEO, Black, Gifted & Whole Foundation

Recently, as I scrolled through the news, I froze reading a headline: “Only 6% of coronavirus deaths caused by COVID-19.” 

Suddenly unable to hear, see, or feel my surrounding, I was taken back to March on the day I began experiencing COVID-19 symptoms. I was taken back to three weeks that followed. I was taken back to the anxiety and the immense feeling of the unknown. 

I was symptomatic when I was self-diagnosed. Every day I dreaded the possibility of waking up to the realization that I was becoming sicker by the minute. Would my symptoms be taken seriously? Would I be able to see a doctor before my symptoms got too severe? Would a hospital treat me with the same care knowing I have a preexisting condition?

I am a Black, queer, HIV-positive man living in America. I have lived with HIV for 15 years. I have learned that society is not built to protect me. Laws are not made to protect me. Healthcare is not built to protect me. 

When the pandemic started, I immediately became concerned about getting food and my daily medications. In order to keep my immune system healthy, more so than the average person, I rely on fueling my body with healthy foods and religiously taking my prescribed medicine. I also know that healthcare in the United States is segregated. As a Black, queer, HIV-positive man, I am almost guaranteed to get inadequate healthcare compared to my white, heterosexual, HIV negative male counterparts. Black men are more likely than white men to have their pain ignored or deemed not severe. Queer men are more likely than heterosexual men to be refused care and abused in medical settings. HIV positive patients are more likely than HIV negative patients to have other health conditions go undiagnosed or untreated.

I live daily in fear that being Black, being queer, and being-HIV positive negatively influence the healthcare I receive. As doctors and medical professionals dealt with an influx of COVID-19 patients, priority was given to patients who were the most ill. I worried that by the time I got “bad enough” to receive care, my HIV status and weakened immune would complicate my care, and it would be too late. 

Fortunately, after three weeks, my immune system fought off the virus. I tested negative. A small sense of relief washed over me. But I still carry the weight of knowing my Blackness, my queerness, and my HIV-status puts me at risk when I am walking down the street, when I tell someone who my partner is, and when I develop any illness in the future, including a possible recurrence of COVID-19. 

After a few minutes of staring at the headline that brought me back to March, I grounded myself. As I sat with the article proclaiming just 6% of coronavirus deaths are caused by COVID-19, I knew this number would be used to minimize deaths of people similar to me who were HIV-positive at the time of their death. HIV may have complicated their deaths, but if it were not for COVID-19, they would still be alive. 

In light of what I experienced, we created the The BLACK BOX Care Program to address the myriad of concerns affecting Black queer students during the COVID-19 global pandemic. Many student have been displaced and are in need of tangible support.  Each box varies and is stocked full of our 5-year anniversary merchandise, offerings from Black Queer authors such as Yolo Akili and George Johnson, and additional contributions from Black Queer entrepreneurs like The Blairisms, THRIVE SS, The Mindful Techie & The LAMDA Lounge. We have already sent out 50 Blackboxes to students in need.

The future of the COVID-19 pandemic is unclear. No one knows precisely when it might end. There is a possibility that I can be infected again. Thousands of people, similar to me, are dying weekly. However, I realize while it can be easy to live in immense fear and despair, I look towards the community, the encouragement, and the positivity at the Black, Gifted, and Whole Foundation. It gives me the motivation and inspiration to keep moving forward. 

About Black, Gifted & Whole Foundation: The Black, Gifted & Whole Foundation (BGW) represents a revolutionary attempt to improve the collective narrative of Black Queer folx. Their mission is to empower, educate and mobilize Black Queer folx by acknowledging, celebrating and affirming their whole selves. BGW believes that Black Queer folx are multifaceted and deserve innovative and meticulously researched approaches when being engaged. They believe that Sexual Health + Higher Education + Access to Resources can drastically improve the trajectory of their lives. BGW — conduct intake of — young Black Queer folx while in High School, College, or Graduate School, assess their needs, aspirations and sexual health awareness and provide them with financial and emotional support. Donate to Black, Gifted & Whole Foundation.

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.