Drug Shortages Growing, but Spares HIV-related Injectable Therapies

By: Ranier Simons, ADAP Blog Guest Contributor

Periodic shortages of all kinds of products are common. The height of the coronavirus pandemic even created a widespread shortage of toilet paper, Lysol, and baby formula. At times, drug shortages are also not uncommon. Nevertheless, drug shortages have been a trending topic in the media. The heightened discourse is atypical for so many drugs to be experiencing shortages simultaneously. Not only are there many drugs in shortage, but they have been in scarcity for a long time. Moreover, some of the drugs in shortage treat life-threatening conditions. Now shortages appear to be impacting injectable therapies.

Photo Source: Forbes

Drug shortages have increased over time, with the end of 2023 being the highest in the past ten years. At the end of 2025, according to the U.S. Food & Drug Administration (FDA), 125 drugs were in shortage status. Some of the drugs were new to the shortage list. However, many have been in shortage status for years. Furthermore, the duration of shortage status has also been increasing. In 2023, the average shortage was about three years compared to a duration of two years in 2020.[1] Unfortunately, at 2023 year-end, about a quarter of the drugs on the list had been in shortage for approximately five years, and treatments such as epinephrine injections had been in shortage for over ten years.[1,2]

Drug shortages affect all aspects of healthcare. No one therapeutic class is disproportionately harmed. Clinicians are frustrated because shortages of life-saving medications endanger many living with life-threatening conditions. Complete outages of supply mean that some patients must suffer through dangerous delays in care. In other cases, doctors must switch regimens completely due to shortages, forcing them to use medications they do not feel are the best options for patients. This results in using less efficacious medications with poorer desired outcomes and undesirable side effects. Additionally, when shortages result in switching from a regimen in progress, there is a danger of the body becoming unresponsive to the original regimen when the shortage is resolved.

A myriad of issues create drug shortages. Some of those issues are economic, supply and demand, and even manufacturing quality problems. Shortages are more common with lower-priced drugs such as generics.[3] A prescription for most of the injectables and solid oral medications in shortage costs less than five dollars to produce.[1,2] This translates into meager manufacturer profit margins, especially with wholesalers and purchasing groups driving down pricing. Thus, manufacturers are not incentivized to produce those medications in sustained large quantities. The FDA cannot force a company to make a particular medication, even if it is needed.

Photo Source: FDA

Supply and demand issues also drive shortages. In some cases, demand outpaces supply when drugs are used for expanded use cases. This is the case for drugs like Ozempic and Wegovy, which are GLP-1 drugs whose primary indications are to treat diabetes. The discovery of its effectiveness in weight loss has resulted in a vastly increased demand. The demand driven by the population of those dependent upon GLP-1 drugs to manage diabetic conditions in combination with those using them for weight loss has driven outages as well as increased pricing. Some of the demand for other drugs is driven by increases in prescriptions due to telemedicine. During the pandemic, restrictions were lifted on the prescribing of certain classes of medicines via telemedicine, such as Adderall, which is used for ADHD.[4] This resulted in increased demand for the drug which contributed to shortages that are still seen presently. This is especially pertinent since some obtain Adderall and other medications online for purposes of substance abuse.

Manufacturing problems and supply chain issues strongly contribute to drug shortages as well. The U.S. is dependent upon sources outside of the country for many of the drugs in shortage status. Less than one-quarter of the oral generics used in the U.S., and about 40 percent of sterile injectable generics are manufactured domestically. Approximately 17% of injectables used in the U.S. are manufactured in China.[5] Most importantly, many of the raw ingredients for pharmaceuticals are sourced outside of the U.S., with materials for 90-95 percent of U.S. generic injectable drugs coming from China and India.[5,6] Manufacturing certain older generic drugs, especially sterile injectables, is difficult due to the sterile manufacturing conditions required; thus, the number of capable facilities is low.

About 53 percent of the newest drug shortages are generic injectable medicines.[7] Sterile injectables include normal saline, antibiotics, flu vaccines, chemotherapy drugs, morphine, and insulin. Shortages in chemotherapy drugs have caused doctors and hospitals to resort to drug rationing. In those instances, hard decisions must be made regarding the treatment of life-threatening cancers. Doctors must choose which patients receive certain medications based on decisions based on curative intent and probability versus overall survival.

Photo Source: ADAP Advocacy

Drug shortages were also of heightened concern for those living with HIV during the coronavirus pandemic. In March 2020, ADAP Advocacy received assurances directly from each drug manufacturer that the coronavirus pandemic wasn’t negatively impacting the availability of anti-retroviral medications. The pharmaceutical industry was applauded for its efforts to protect the anti-retroviral drug supply chain.[8] At that time all of the drug manufacturers – AbbVie, Janssen Pharmaceuticals, Gilead Sciences, Merck. Theratechnologies, and ViiV Healthcare – did not foresee disruption to their supply chain.

Considering injectable therapies are increasingly showing up on the FDA’s drug shortage list, ADAP Advocacy once again inquired with its industry partners about potential concerns over shortages of injectable HIV-related medications, such as the injectables Cabenuva for the treatment of HIV, and Sunlenca for the prevention of HIV. 

Reaching out to the industry resulted in very positive feedback. A representative from ViiV Healthcare stated that “there are no current shortages nor anticipation of any prolonged shortages of any injectable within the ViiV portfolio.”

A Gilead spokesperson likewise stated, “Gilead’s commercial supply chain is robust, and we have a strong inventory position. We continually monitor the forecast and actively manage supply; thus, we do not anticipate any supply concerns related to Sunlenca®, Gilead’s twice-yearly injectable HIV treatment option for people living with the virus who are heavily treatment-experienced with multi-drug resistant HIV. We are committed to person-centric HIV treatment research and development, ensuring our advances in biomedical innovation reach the wide range of individuals and communities who are most in need.” 

Drug shortage is a serious concern that will require a multi-pronged approach to solve. The White House, FDA, and others must find solutions to the manufacturing, regulatory, and supply chain challenges. The government is already looking into investing in some of the raw materials needed for drug creation, which is a good start.

[1] Lokuwithana, D. (2024, June 15). U.S. drug shortages worsen to reach a decade high: report. Retrieved from https://seekingalpha.com/news/4116477-us-drug-shortages-reach-decade-high

[2] Silverman, E. (2024, June 4). U.S. drug shortages have reached a decade high and are lasting longer, too. Retrieved from https://www.statnews.com/pharmalot/2024/06/04/shortages-medicines-drugs-hospitals-manufacturing-cancer-adhd-gpo/

[3] IQVIA. (2023, November 15). Drug shortages in the U.S. 2023. Retrieved from https://www.iqvia.com/insights/the-iqvia-institute/reports-and-publications/reports/drug-shortages-in-the-us-2023

[4] Gilbert, D., Amenabar, T. (2023, March 14). An Adderall shortage has not let up. Here is why. Retrieved from https://www.washingtonpost.com/business/2023/03/14/adderall-shortage-telehealth-prescriptions/

[5] Owens, C. (2024, January 5). Low prices are contributing to America's drug shortage problem. Retrieved from https://www.axios.com/2024/01/05/america-generic-drug-shortage-reasons

[6] United States Senate Committee on Homeland Security and Governmental Affairs. (2023, March). Short Supply: The Health and National Security Risks of Drug Shortages. Retrieved from https://www.hsgac.senate.gov/wp-content/uploads/2023-06-06-HSGAC-Majority-Draft-Drug-Shortages-Report.-FINAL-CORRECTED.pdf

[7] U.S. Pharmocopeia. (2024, June). USP Annual Drug Shortages Report. Retrieved from https://go.usp.org/l/323321/2024-05-31/92zsjg/323321/1717187146zgOpt4vW/GEA_GC_056R_MSM_Report_2024_05_FINAL.pdf?_gl=1*e6c4sj*_gcl_au*Mjc1NzUzOTg5LjE3MTc1MTMzOTM.*_ga*OTI0OTQ1ODI4LjE3MTc1MTMzOTM.*_ga_DTGQ04CR27*MTcxNzUxMzM5My4xLjEuMTcxNzUxMzc1Ny4wLjAuMA

[8] ADAP Advocacy. (2020, March 26). Press Release: ADAP Advocacy Association Applauds Pharmaceutical Industry Efforts on Protecting the Drug Supply Chain during the Coronavirus Pandemic. Retrieved from https://www.adapadvocacy.org/pdf-docs/2020_ADAP_Press_COVID_19_Supply_Chain_03-26-20.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. 

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.  

COVID-19 Vaccination Clinical Trials MUST Include PLWHAs

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

As the COVID-19 pandemic enters its ninth month, the world is still struggling to create a vaccination and find medication to treat the virus properly. President Trump has been saying for months that the vaccine trials and research are going well, and America should expect a vaccination by the end of the year. While this sentiment is hopeful (and considered by many to be driven by politics and not science), it does exclude the major process involved in vaccination trials: testing trials, which can take months to years. 

Photo Source: health management.com

Vaccination trials have begun around the world but are a slow process. One vital aspect of these trials is testing and planning for the immunocompromised population, who are often most affected by the diseases typically vaccinated for. In a vaccination trial for COVID-19 by Moderna Inc., the biotechnology company initially excluded people living with HIV from COVID-19 vaccine trials (Smart Brief).

After pressure and lobbying from HIV advocates, the biotech company expanded their vaccine trials to include HIV positive persons. 

“Moderna Inc. is committed to working with all communities who could benefit from our COVID-19 vaccine. While we had always planned to evaluate mRNA-1273 in people living with HIV (PLWH) in a separate study, as we are doing for other participant groups, we have heard the preference of the community to be included in the ongoing Phase 3 study in the U.S.,” Moderna Inc. shared on their Twitter account on Aug. 5. (Twitter).

Photo Source: Moderna

Those with underlying health conditions such as HIV and those above the age of 50 are at highest risk for COVID-19. According to the U.S. Centers for Disease Control & Prevention (CDC), nearly half of people in the United States who are diagnosed with HIV are 50 and older. (CDC)

As COVID-19 is a relatively new virus, the long-term effects of it are unknown on those with HIV. As of now, there is no evidence to suggest those with HIV have an increased risk of infection and severity of illness if they were to contract COVID-19, according to the Journal of the International AIDS Society. 

“It is thought that people living with HIV who have achieved viral suppression through antiretroviral treatment and do not have a low CD4 count will be affected by COVID-19 in a similar way to what a person not living with HIV would be, based on other coronavirus-caused disease outbreaks such as SARS (caused by SARS-CoV-1) and MERS (caused by MERS-CoV), where only a few cases of mild disease among people living with HIV were reported,” said JIAS. (JIAS) 

In an opinion article written for the website Devex in late May of this year, Mitchell Warren makes an excellent observation about the connection between the COVID-19 vaccination trials and what we can learn from previous experience with the HIV responses around the world. 

“As we know so well from over 40 years of experience in the HIV response, developing and delivering prevention and treatment options at scale is essential to containing an epidemic. But no durable and sustainable end to any epidemic is possible without a vaccine,” Warren said. (Devex)

Vaccine trials are expected to continue through the end of the year and into 2021, until a proper vaccination is discovered for COVID-19. Until then, the CDC recommends all those with underlying health conditions such as HIV take extra precautions while going out in public and conversing with others. It is equally important the PLWHA not be excluded from the clinical trials for any COVID-19 vaccination

References:

• Moderna. (2020, August 05). Today, we are sharing an important update about our protocol for the Phase 3 COVE Study of mRNA-1273, our vaccine candidate against COVID-19. pic.twitter.com/jigTXUi9v2. Retrieved August 26, 2020, from https://twitter.com/moderna_tx/status/1291056643464192001?ref_src=twsrc^tfw|twcamp^tweetembed|twterm^1291056643464192001|twgr^
• People with HIV to join Moderna COVID-19 vaccine trial. (2020, August 10). Retrieved August 26, 2020, from https://www.smartbrief.com/branded/D4C8EBAD-9C67-4D55-869C-CC2C8F893F9E/83E1E967-BCC2-4A2E-AF19-D2FCF2C8EBF2
• Warren, M. (2020, May 27). Opinion: To accelerate search for COVID-19 vaccine, look to HIV and act globally. Retrieved August 26, 2020, from https://www.devex.com/news/opinion-to-accelerate-search-for-covid-19-vaccine-look-to-hiv-and-act-globally-97267
• What to Know About HIV and COVID-19. (n.d.). Retrieved August 26, 2020, from https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/hiv.html
• What you need to know. (n.d.). Retrieved August 26, 2020, from https://www.iasociety.org/covid-19-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. 

An America on the Precipice of a COVID-19 Disaster

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

For those of us who grew up in the 1980s and ‘90s, one of the biggest concerns about having sex was the fear of contracting HIV. But, it wasn’t just having sex we were afraid of, in the beginning – it was pretty much every activity.

In the beginning years, we didn’t really know how it was contracted. Was it airborne? If we didn’t wear masks and essentially biohazard suits in hospital rooms, were we going to get it and end up just like “them” – the “others” who fell victim to the devastation of the AIDS epidemic sweeping across the country and taking no prisoners?

We didn’t know not know how it was spread; we didn’t know how to treat it. Every other week, we heard rumors of a cure; of some expensive treatment in Mexico, or Brazil, or Germany that could cure AIDS, but the U.S. government just didn’t want us to know. Desperate people weren’t given hope; they were given expiration dates.

I was just a kid, growing up in the middle of the HIV epidemic of the 1980s and ‘90s, and, to this day, I remember being terrified of the images we saw on television and in every magazine. Worse still, I remember being pissed off at the thought that our federal government sat back and did virtually nothing; said virtually nothing. Although AIDS was identified in 1981 (at GRID – Gay-Related Immune Deficiency), then-President Ronald Reagan never publicly mentioned the word until a press conference in September 1985, a full four years too late, and many dollars too short.

When the COVID-19 pandemic first made its way to the United States, people who had lived through the AIDS epidemic of the ‘80s and ‘90s began making comparisons between HIV and COVID-19. Those comments were almost immediately shouted down by those who were offended by the comparison, insisting that it made light of people living with HIV. Those of us who saw and commented on the parallels were castigated for our poor taste and lack of empathy.

Photo Source: IBTimes UK

Turns out, we were right.

The spread of the COVID-19 pandemic throughout the U.S. mirrors that of the HIV epidemic in many ways:

• We were, and still are, plagued (as it were) by uncertainty about how the disease is spread, contained, and treated; 
• A certain segment of Americans is pinning the blame on a vulnerable minority population for “causing” or “creating” the disease, and discriminating and, at times, literally bashing people whom they blame for bringing it here (read: “China Virus” or “Wuhan Flu”);
• We have a White House occupant who is neither willing, nor able to admit the severity of the pandemic, and is focused more on his own venality and “ratings” than on the lives of the Americans he was stupidly elected to represent;
• We have an endless supply of snake oil salesmen peddling fake cures, fake preventative devices, and frankly shitty “medical” advice to a population that is both frightened, and super-credulous;
• We have a patchwork approach to dealing with the virus, in no small part because we have all but gutted our public health systems in none-urban areas;
• We have an overworked, underpaid, and increasingly frustrated and disheartened frontline medical staff that hasn’t seen a break since March, and gets to watch idiots wander around in public without masks, like nothing is going to happen to them;

The similarities between the two epidemics exists in no small part because, as with the HIV epidemic, our federal government has been led to failure by an incompetent administration, hellbent on hamstringing medical professionals and proffering false hope of a quick turnaround, optimism that we’re turning a corner, and outright lies, when what the American people need is honesty, instead of a lying carnival barker.

It isn’t just HIV survivors who see these parallels – epidemiologists have recognized this pattern of failure in America’s healthcare system and governance:

"If you put a map of the HIV epidemic over a map of the worst coronavirus hotspots, they look almost identical,” said Jared Baeten, the vice dean of the University of Washington’s School of Public Health and an HIV epidemiologist for more than a decade. “COVID is becoming just another disease that travels along the fault lines of the disparities in our society. (Hobbes, 2020)

A lot of HIV researchers are exasperated,” said Greg Millett, the vice president and director of public policy for amfAR, the Foundation for AIDS Research. “We’re old enough to have lived through the HIV response, and we’re watching the same mistakes taking place with COVID. (Hobbes, 2020)"

It’s no accident that the most trusted man in America – at least, trusted by intelligent Americans – is Dr. Anthony Fauci, one of the preeminent researchers and doctors of the HIV epidemic. He has long been honored as a beacon of integrity and leadership throughout the course of the HIV/AIDS epidemic.

Photo Source: homelandprepnews.com

For those of us old enough to remember watching friends and loved ones die of HIV/AIDS, watching the same mistakes being repeated, only with greater incompetence and with a brazen refusal to do what’s necessary and right, is traumatic. One of the first casualties I knew personally was someone whose adult life was dedicated to serving people living with HIV:

Garry Bowie, with whom I collaborated for the Long Beach AIDS Foundation, in Long Beach, CA, passed away in the early months of the pandemic. He was a man in whom I found a trusted confidante, and his husband, Jeff Wacha, has been soldiering on as best he can.

After Garry’s passing, I wept for the first time since my partner and I separated. I can’t imagine what Jeff is experiencing, and worse, still, how infuriated he must be to watch idiots wandering around without masks, like their lives aren’t literally on the line.

So, yes – the HIV and COVID-19 epidemics share many similarities, and to anyone who says that I, as someone living with AIDS, shouldn’t say that, because it’s insensitive, I invite them to shut the hell up and pay better attention.

References:

• Hobbes, M. (2020, August 11). Will America Let COVID-19 Become The Next HIV? Huffington Post. https://www.huffpost.com/entry/will-america-let-covid-19-become-next-hiv_n_5f31ad0ec5b6960c066af7d1?ncid=engmodushpmg00000004

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 Essential Patient Resource: Pharmacists

By: Glen Pietrandoni, RPh, AAHIVP, VP Industry Relations, AVITA Pharmacy

Pharmacists have been on the front line of the COVID-19 response to ensure patients remain safe and continue to receive essential medicines on time. Pharmacists are the most easily accessible healthcare professionals in the community. No appointments are necessary, and pharmacists don’t charge to speak with them!

Since the pandemic began, pharmacists have spent a lot of time educating people about COVID-19, and reinforcing messaging about how to reduce the spread, social distancing, hand washing, masks, etc. This is especially important where some may think they don't have to worry about the virus, or if it is not yet present in their community. Let’s face it, there’s a lot of mixed messages around the country. Pharmacists can help provide trusted information to help you and your family, absent of political views or stigma.

Forty years of helping people thrive within the context of HIV treatment and prevention gives pharmacists and patients an advantage today as we have learned how to care for each other during difficult times in the past. Most importantly, the need to continue a high rate of adherence to medication does not change because of this disruption in our daily routine due to the coronavirus. We are all champions for U=U. To stay undetectable during a pandemic of this new virus, we cannot let up on being adherent to the drugs for the old virus. YOU CAN DO THIS, and pharmacists can help.

I have often written and spoken about the importance of having a relationship with your pharmacist and pharmacy staff. That could be as simple as making a point of engaging in a simple conversation, for instance, asking their name, or asking if you can ask questions from time to time.  I’ve mentioned in the past that it’s more common to know the name of the person that cuts your hair or the barista at Starbucks, than to know the name of your pharmacist. If the pharmacy you are using pushes back or doesn’t make that easy for you, then you might want to consider looking for a pharmacy/pharmacist that understands HIV and YOU. You deserve that courtesy!

Let’s talk about how pharmacist can help you during the COVID-19 pandemic and beyond.

Pharmacies have remained open during the outbreak

You may need to check if the operating hours have changed, but pharmacists are considered essential workers and have been eager to accommodate unusual circumstances when possible. Try to plan ahead for refills if possible, as the pharmacies might be busier than usual.  Also, if your insurance or ADAP (AIDS Drug Assistance Program) plans require renewal or recertification, check into this before you are out of medication to avoid delays. Many pharmacists can help you if you have questions. With COVID-19  exceptions are being made to allow grace periods and extensions.

Consider requesting 90-day refills if the insurance coverage or ADAP allows.

Pharmacies often offer delivery options

Pharmacies continue helping people – particularly the most vulnerable – get prescriptions filled online or remotely, and have medications delivered to your home. Check with you pharmacy about options and potential cost of delivery.

By helping you stay healthy

Pharmacists can speak with you regarding your medication questions because they can see your prescriptions from all your providers in one place. Pharmacists can help you at times when you need prescription refills by contacting your doctors for you. During this time, providers are also very busy and difficult to reach. Pharmacists work closely with providers and could save you some time and stress.

Did you know you pharmacist can synchronize your medications to minimize the numbers of trips to the pharmacy or deliveries? Why not get all your medications at one time. That you also help you stay adherent and not run out of medication.  Makes sense! Another part of the pharmacists’ job is to check for drug interactions, monitor for potential adherence challenges and help you manage side effects or adverse reactions. 

Many pharmacies have apps to help people manage their health and medications. These have become more useful during COVID-19, allowing patients to manage medications through alerts for refills and even dosing reminders. We’re all a little more stressed than usual, so it might be worth trying these out.

By helping you save money 

Some people have prescription copays (money due to the pharmacy paid by the patient). It’s a good idea to ask you pharmacist (you know their name now, right?) if they are aware of ways to save money on out-of-pocket costs.

Now that you know your pharmacist’s name, it will be nice to speak to a friendly voice every month or so. In this time of COVID-19, isolation and depression can be a concern for so many people. As a pharmacist myself, I know that building relationships with my patients over time allowed me to check in with them monthly. In that interaction, our relationship provides some comfort and opens the door for questions and conversations. My favorite question to my patients were things like “how’s your dog?”, or “do you have a restaurant recommendation?” In doing this, I get a sense of how my patients were doing emotionally and is an indirect way to check on their well-being. Of course, with coronavirus, it is so important to stay connected, the questions are more directed toward staying safe and taking precautions. Because the relationship exists, this is an easy pivot based on mutual trust.

At this time, we can all use a helping hand and a friendly voice. Pharmacists can be that someone that fits this role during covid and long after.

Click here to download the "Talking to Patients About Access to Medication - A New Resource" published by the Community Access National Network (CANN) and the Partnership for Safe Medicines (PSM).

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.