Fireside Chat Retreat in Philadelphia, PA Tackles Pressing Public Health Issues

By: Brandon M. Macsata, CEO, ADAP Advocacy

ADAP Advocacy hosted its "Health Fireside Chat" retreat in Philadelphia, Pennsylvania among key stakeholder groups to discuss pertinent public health issues facing patients in the United States. The Health Fireside Chat convened Thursday, September 21st through Saturday, September 23rd. The growing threat to public health from the spread of medical misinformation and disinformation, reforming the 340B Drug Pricing Program to better serve patients rather than providers, and the effective implementation of longer-acting HIV treatment and prevention programs were evaluated and discussed by the 20 diverse stakeholders.

The Fireside Chat's “ice breaker” activity included some fun and games at Dave & Buster's with their pool tables, video games, carnival challenges, and virtual reality. Attendees enjoyed some bonding and laughter before collectively rolling up their sleeves and taking a deep dive into the policy discussions.

Photo Source: Getty Images

The Health Fireside Chat included moderated white-board style discussion sessions on the following issues:

• Public Health Alert: Medical Misinformation Can be Dangerous to Your Health — moderated by Rick Guasco, Acting Editor-in-Chief and Creative Director at Positively Aware
• 340B Drug Discount Program: The Issues Spurring Discussion, Stakeholder Stances, and Possible Resolutions? — moderated by Tim Horn, Director, Medication Access at NASTAD
• Long Acting Injectables: Effective Implementation of Longer-Acting HIV Treatment and PrEP Requires Delivery System Innovation — moderated by Jeffrey Crowley, Distinguished Scholar/Program Director, Infectious Disease Initiatives at the O'Neill Institute/Georgetown Law

The discussion sessions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Health Fireside Chat. The following represents the attendees:

• Ninya Bostic, National Policy and Advocacy Director, IDV, Johnson & Johnson
• Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
• Theresa Daugherty, Patient Advocate
• David Gana, Patient Advocate
• Alexander Garbera, Co-Chair, New Haven Mayor’s Task Force on AIDS, City of New Haven, CT
• Dusty Garner, Patient Advocate
• Rick Guasco, Acting Editor-in-Chief and Creative Director at Positively Aware
• Tim Horn, Director, Medication Access at NASTAD
• Riley Johnson, Founder, RAD Remedy
• Thomas Johnson, Executive Director, Alliance to Save America’s 340B Program
• Jen Laws, President & CEO, Community Access National Network
• Darnell Lewis, Program Coordinator, RAO Community Health
• Brandon M. Macsata, CEO, ADAP Advocacy
• J. Maurice McCants-Pearsall, Government Relations Director (Southeast), ViiV Healthcare
• Aisha McKenzie, Patient Advocate
• Warren O’Meara-Dates, Founder & CEO, The 6:52 Project Foundation
• Brian Smith, Alliance Development and Strategic Advocacy
• Matt Toresco, CEO & CPO, Archo Advocacy LLC & Elavay
• Stacey L. Worthy, Director, Healthcare Policy & Strategy, Johnson & Johnson
• Joey Wynn, Chairman, Florida HIV/AIDS Advocacy Network

The Covid-19 pandemic is still ongoing. Covid-19 cases and hospitalizations are both on the rise again, according to data by the Centers for Disease Control & Prevention (CDC) With that in mind, ADAP Advocacy implemented strong Covid-19 safety protocols for the Health Fireside Chat, which included proof of vaccination/booster, robust self-administered testing (prior to travel, upon arrival, and after returning home), complimentary rapid self-test kits and hand sanitizer for each of the attendees, as well as guidelines for masks on commercial travel to the event, and optional masks during the sessions (which some attendees exercised without feeling shunned).

ADAP Advocacy is pleased to share the following brief recap of the Health Fireside Chat.

Medical Misinformation:

The first policy session, “Public Health Alert: Medical Misinformation Can be Dangerous to Your Health”, lead by the Positively Aware Magazine’s Rick Guasco, challenged guests to evaluate their own role in potentially sharing medical misinformation without even knowing it. Guasco highlighted that everyone can do something about misinformation, starting with being cognizant of how people can potentially spread it. A little information is a dangerous thing. Medical misinformation is information that is false, inaccurate, or misleading. A little misinformation can become the building block of lies and ignorance. As such, medical disinformation is misinformation with a purpose. According to the Kaiser Family Foundation's recent poll, most Americans encounter health misinformation, and most aren’t sure whether it’s true or false local TV.

Drawing on KFF's Misinformation Pilot Poll, KFF released three follow-up reports examining exposure to, and belief in, health misinformation among Black adults, Hispanic adults, and rural communities.

Guasco shared what he viewed as the best three ways to combat medical misinformation and disinformation. They included 1) promoting the truth by proactively talking about health literacy, 2) pre-bunking fake medical news by putting counter-arguments out in anticipation, and 3) de-bunking fake medical news, but it is more difficult because it is harder to change minds once the misinformation and disinformation is spread. Significant conversation centered around lingering medical mistrust in the Black community after the Tuskegee Airmen experiments. Rev. Alexander Garbera offered an excellent quote to summarize how to combat the dangers associated with medical misinformation and disinformation: "Combat fear with empathy."

Photo Source: Florida International University

The following materials were shared with retreat attendees:

• Ex-JAMA Chief: Cut the Hype, Spin in Published Studies — Howard Bauchner, MD, says researchers want to report accurately, but "they too have their biases" via MedPage Today
• Doctors who put lives at risk with covid misinformation rarely punished via The Washington Post
• Abortion health information via National Library of Science
• Science Communication in the Age of Misinformation via CROI 2023

ADAP Advocacy would like to publicly acknowledge and thank Rick Guasco for facilitating this important discussion.

340B Drug Discount Program:

As a backdrop to the discussion over the 340B Drug Discount Program, an opinion piece dropped calling out the hypocrisy behind the forces fighting reform. NASTAD's Tim Horn kicked-off the discussion with an overview of the program, including an analysis on how 340B intersects with the Ryan White HIV/AIDS Program, including State AIDS Drug Assistance Programs (ADAP). In that, some challenges were addressed – such as explosive program growth, lack of transparency, and calls for more oversight. There was particular focus on ADAPs and their specific programmatic use of the 340B dollars exclusively for patient care, and that in many ways it represents the "gold standard" among Covered Entities participating in the program. The discussion also centered around some of the pros and cons associated with ongoing reform proposals; they included contract pharmacy restrictions, discriminatory reimbursement laws, and possible federal legislation (e.g., ASAP 340B). The conversation touched the rising medical debt crisis in the United State (of which, most medical debt is actually hospital-associated debt), declining charity care among hospitals, as well as the adverse impact on patients via provider consolidation. Ongoing scrutiny over the lack of transparency in the program continues to grow, evidenced by the Request for Information (RFI) issued by a group of bipartisan senators, including Senator John Thune (R-SD), Senator Debbie Stabenow (D-MI), Senator Shelley Moore Capito (R-WV), Senator Tammy Baldwin (D-WI), Senator Jerry Moran (R-KS), and Senator Benjamin Cardin (D-MD). Read the joint statement by ADAP Advocacy and CANN, here.

Photo Source: Positively Aware

The following materials were shared with retreat attendees:

• ADAP Crisis Task Force Fact Sheet via NASTAD
• Principles for Ensuring the 340B Program Benefits Patients and True Safety-Net Providers via ASAP 340B
• Creating Long-Overdue Clarity Around Patient Definition in the 340B Program via ASAP 340B
• Estimated Changes in Manufacturer and Health Care Organization Revenue Following List Price Reductions for Hepatitis C Treatments via JAMA Network
• 340B-Where Do We Go From Here? via JAMA Network 
• Pharmaceutical Manufacturer 340B Price Restriction Policies and Exemptions Summary. Ryan White Clinics for 340B Access via RWC340B
• HIV Prevention and the 340B Drug Pricing Program via The New England Journal of Medicine
• The 340B Drug Discount Program Exceeds #100B in 2022 via IQVIA
• 340B and Ending the Epidemics via National Coalition of STD Directors
• 340B: A Critical Program for Health Centers via National Association of Community Health Centers
• A Syndemic Approach to STD 340B Correctional Facility Partnerships for Health Department Prevention Programs via NASTAD
• Best Practices for Shared ADAP and Other 340B Covered Entity Clients via NASTAD
• Association of 340B Contract Pharmacy Growth with County-Level Characteristics via American Journal of Managed Care
• How a Hospital Chain Used a Poor Neighborhood to Turn Huge Profits via The New York Times

ADAP Advocacy would like to publicly acknowledge and thank Tim Horn for facilitating this important discussion.

Editor's Note: The ADAP Advocacy Association has offered opinions on 340B over the last several years, including Industry’s Changes to 340B Drug Discount Program (April 2022), 340B – Reply Hazy, Try Again (January 2020), The Federal 340B Program: A Call to Order (March 2019), and 340B Program: Don't Throw the Baby Out with the Bathwater (March 2017)

Long-Acting Injectables:

The O'Neill Institute for National and Global Health Law recently published a brief, Effective Implementation of Longer-Acting HIV Treatment and PrEP Requires Delivery System Innovation. The O'Neill Institute summarized long-acting injectables:

"Scientific advancements resulting from our long-term national commitment to HIV research have begun producing new products both for HIV treatment and prevention that do not require daily dosing. The first standalone longer-acting (LA) FDA-approved products are delivered by intramuscular injection every 1-2 months, but future products may require far less frequent injections or could come in other forms such as small implants under the skin or oral medications. These products represent exciting advances because they give users more options to stay engaged in the HIV treatment or prevention continuum. While many patients and providers speak of how transformative these products can be, access to these products is limited and a myriad of barriers prevent individuals from accessing them. Deliberate policy actions are needed to ensure that these innovations do not bypass the individuals and communities that stand to benefit the most from them."

Read the brief and its related materials. 

Jeffrey S. Crowley led this important discussion. While early in the implementation of these products, several barriers have arisen that must be overcome.  Among these are:

1. Adapting our current clinics and health care programs to allow for greater scale;
2. Overcoming insurance and financing barriers to access;
3. Addressing regulatory and financing barriers to new delivery models, such as greater use of pharmacies, mobile clinics, or self-administration; and,
4. Ensuring that innovations in HIV services delivery reduces rather than increases equity.

Some perspective was also shared on the work done by the O'Neill Institute in this area. Dusty Garner offered his perspective on some of the challenges he has encountered accessing his LAI treatment. Additionally, several members of the ADAP Advocacy's ADAP Injectables Advisory Committee, including Jen Laws, Riley Johnson, and Warren O-Dates, offered their perspectives on LAIs and the challenges being faced by patients.

Photo Source: European AIDS Treatment Group

The following materials were shared with retreat attendees: 

• Big Ideas Brief: Effective Implementation of Longer-Acting HIV Treatment and PrEP Requires Delivery System Innovation via O'Neill Institute
• Quick Take: Equitable Access to New HIV Treatment and Prevention Options is Needed Across Payers via O'Neill Institute
• Quick Take: New Options for HIV Treatment and Prevention are Here via O'Neill Institute
• Cabenuva (cabotegravir & rilpivirine extended-release injections) Considerations for AIDS Drug Assistance Programs via NASTAD
• Pipeline Report 2023 via Treatment Action Group
• Long-Acting Injectable Cabotegravir for PrEP: Understanding Results of HPTN 083 & 084 and key areas for advocacy via AVAC
• Long-Acting Injectables Antiretrovirals for Treatment and Prevention via AVAC

ADAP Advocacy would like to publicly acknowledge and thank Jeffrey S. Crowley for facilitating this important discussion.

Additional Fireside Chats are planned for 2023 in New Orleans, Louisiana.

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.

Tell HIV Stigma: Stay in Your Lane

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

****Important Support Resources Included****

Recently, I posted some commentary on my personal Twitter handle (@Purple_Strategy) noting an observed uptick in HIV stigma in the gay dating world. Gay dating apps are notorious for it. Likely, it isn't limited to the dating space, evidenced by a recent report issued by GLAAD, as well as subsequent commentary in private conversations and social shares highlighting examples of HIV stigma. It is very rare for me to interject my personal life's situations into ADAP Advocacy's daily advocacy and public policy activities, but it is vitally important to combat such stigma whenever possible. Frankly, HIV stigma has no place in my life and thus it needs to stay in its lane.

I'm a Taurus; we're pretty confident. I'm Italian; we're tough as nails. You hit me; I hit you ten times harder. But not everyone is like me. These recent dating rejections surrounding my status (undetectable, since 2004) weren't the first experiences with HIV stigma, and I know they won't be the last of them. But I can honestly say that I've taken them with a grain of salt. And now, U=U (undetectable equals untrabnsmittable) and fine work being done by Prevention Access Campaign and U=U plus has changed the national conversation.

BUT! Not everyone is a stubborn bull like me. I've had countless conversations with friends and colleagues, whereby their personal "run-ins" with HIV stigma really hurt them. It hurt their feelings, self-confidence, pride, and dare I even say, their self-worth. It has always bothered me on a very deep level seeing them struggle to cope with the ugliness that is HIV stigma.

Fighting HIV stigma won't come easily. According to GLAAD's 2023 State of HIV Stigma Report, only half of the respondents indicated they're "knowledgable" about HIV. Whereas GenX is considered most "knowledgable" about HIV, still one in four don't fall into that designation. What is most troubling is the trend line is going in the wrong direction on the general publics' comfortability interacting with people living with HIV—especially among certain professionals such as barbers or hair stylists, and teachers. Interacting with co-workers living with HIV is now problematic for 1:3 respondents.

Photo Source: GLAAD, 2023

It is 2023, and we're still dealing with 1993 attitudes (pre-HAART). I truly believe that there is plenty of fight left in all of us. I also believe that we are in this fight together, so I felt compelled to share some helpful resources available to my fellow POZ folks who might be coping with HIV stigma:

• Prevention Access Campaign - U=U Resource Center
• CDC - Facts About HIV Stigma and Discrimination
• CDC - Ways to Stop HIV Stigma and Discrimination
• CDC - Stigma Scenarios: Support in Action
• HIV.gov - Standing Up to Stigma
• GLAAD - 2023 State of HIV Stigma Report
• Healthline - How We Start Erasing the Stigma Around HIV
• Center for HIV Law & Policy - Stigma
• SERO Project - United States Resources and Groups
• Transgender Law Center - Legal Information Helpdesk
• Positively Aware - A Day with HIV
• Greater than HIV - Real People. Real Stories.
• ImstillJosh - Twitter
• MarninaTheQueen - TikTok 
• PozLeigh - YouTube Channel

(email info@adapadvocacy.org if you wish to recommend a resource be added above)

Life is hard enough without having to confront stigma, simply over sero status. HIV stigma says more about the people dishing it out, and less about defining who you are. We have the tools to keep HIV stigma in its lane. There are over a million of us POZ folks in the United States, so remember that you're not alone and there are resources available!

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.

340B Hypocrisy: The Inconvenient Truth Behind Why We Need to Reform This Vital Safety Net Program

By: Brandon M. Macsata, CEO, ADAP Advocacy
       Jen Laws, President & CEO, Community Access National Network

The 340B Drug Pricing Program (“340B”) is probably one of the most transformative public health programs providing lifesaving supports and services to people living with HIV in the United States, second only to the Ryan White HIV/AIDS Program (“RWHAP”). As such, rigorous debate about the future of the program is not only healthy, but it is also paramount to its success. As patients (and patient advocates), it is our responsibility to demand accountability, transparency, and stability. There is universal agreement about the vital role 340B plays in improving access to healthcare. But for many – including ADAP Advocacy and the Community Access National Network – we contend that the program could be doing more…and better! The focus of the program should be on the patients, and not the Covered Entities, medical or service providers, or any other business enterprises making lots of money off it. That is the inconvenient truth behind why we need to reform this vital safety net program.

Photo Source: CANN

Section 340B of the Public Health Service Act (PHSA) is a Drug Pricing Program established by the Veterans Health Care Act of 1992. That year, Congress struck a deal with pharmaceutical manufacturers to expand access to care and medication for more patients; if pharmaceutical manufacturers wanted to be included in Medicaid’s coverage, then they’d have to offer their products to outpatient entities serving low-income patients at a discount. The idea was brilliantly simple. Drug manufacturers could have a guaranteed income from participation in the Medicaid program and Covered Entities could have guaranteed access to discounted medications. Congress set-up a payment system by way of rebates and discounts affording certain healthcare providers a way to fund much needed care to patients who could not otherwise afford it. 

“…to stretch scarce Federal resources as far as possible, reaching more eligible patients and providing more comprehensive services.” 

H.R. Rep. No. 102-384(II), at 12 (1992)

THAT is the legislative intent behind 340B. THAT is where some of us want to return 340B’s focus. THAT is why reform is coming!

Ironically, critics of the 340B reform movement – often motivated by self-preservation and protecting their ever-expanding budget and geographic footprint – are quick to attack the idea of the need for reforms. Sadly, they’re also quick to turn their criticism into personal attacks, including questioning the intentions, morals, and character of the people supporting reform. They charge, using Inspector Clouseau “gotcha” style rhetoric, that we’re in the “pockets” of the drug manufacturers because we accept their money to help with our patient advocacy and education (yet there is no “gotcha”, since this information is quite publicly available on our websites, annual tax returns, Guidestar, as well as frequent public commentary). 

Isn’t it funny how the “gotcha” mentality cannot accept the obvious, that maybe our interests align with the drug manufacturers because it is in the best interest of the patients. Drug manufacturers make products patients want and need. Ensuring funding flows in a way that expands patient access to medications does indeed benefit both patients and the drug manufacturers. It should be noted, this criticism tends to also neglect mentioning the interests of the entities challenging reform: anti-competitive consolidation among hospitals and pharmacies (leaving whole areas without services), increasing profits, paying for salaries unrelated to healthcare, and increasing administrative salaries are all excellent examples of why we’re left asking “Who is actually benefiting from this program?”

The truth of the matter is, aside from a growing list of patients, patient advocacy organizations, and drug manufacturers, there is a growing chorus calling for reform. Academia wants it (NEJM, Penn LDI, USC Schaeffer), economists want it (Nikpay, Gracia), national trade associations want it (NACHC, NTU), policy think tanks want it (CMPI, NAN), and even multiple news media outlets are suggesting it (Forbes, NYT, WSJ). Local activists are also increasingly fed-up with what they’re witnessing (Dinkins, Feldman, Winstead).

Dr. Diane Nugent, Founder & Medical Director of the Center for Inherited Blood Disorders, recently noted an opinion piece in the Times of San Diego, “A September 2022 analysis by the Community Oncology Alliance revealed that some hospitals participating in 340B price leading oncology medications nearly five times more than the price they paid. Another study found that hospital systems charge an average of 86% more than private clinics for cancer drug infusions.”

But speaking of deep pockets, isn’t it also an inconvenient truth that the very folks fighting reform, and fighting improving the program so patients can benefit more directly from it, are the same folks financed by big hospital systems, and mega service providers abusing 340B intent?

A question often asked by advocates learning about 340B: “So, exactly how much money are we talking about here?”

Photo Source: Business 2 Community

Well, we don’t really know…sort of. For Federal Grantees covered under 340B, their grant contracts require accounting of 340B rebates as part of their programmatic revenues. Those revenues are required to be re-invested in the program, which generated the income. This level of transparency is pretty much a “gold standard” that other Covered Entities (less maybe hemophiliac centers) in the 340B space are required to meet. That’s part of why we, and other advocates, are calling on minimum reporting requirements for hospitals, contract pharmacies, and pharmacy benefit managers (insurers covering medications) to begin providing some data. Clearing up the murkiness, if you will. What we do know is drug manufacturers reported more than $100 BILLION in 340B-related sales last year.

That’s concerning especially because “charity care” is declining and medical debt is a growing issue for more and more patients and their families. The Affordable Care Act mandated “charity care”, or “financial assistance”, to be offered by non-profit hospitals seeking to qualify as 340B entities but did not place any definitions behind the mandate, including any “floor” of how much charity care a hospital has to offer. 

Now, in all rhetoric opposing any type of transparency in 340B, hospitals tend to conflate their “uncompensated care” and “unreimbursed care” or “off-sets” for public health programs – these don’t necessarily reflect any “charity” being provided to patients. These things should be separated when considering what benefit hospitals provide a community. And under that lens, things get kind of ugly with far too many of the 340B hospitals reporting providing less than 1% of their operating costs as charity. When reviewing how much hospitals write off in bad debt, or going after patients who can’t afford care, often far exceeding those charity care levels, we’re left asking if the “non-profit” designation is really a declaration of concentrating “profits” by way of salaries to top executives rather than formal shareholders?

That bad debt shows up for patients as medical debt. And we need to be very specific here: according to the Urban Institute, some 72% of patients with medical debt owe some or all of that debt to hospitals. Meaning, what we call medical debt is really hospital debt. The situation is unarguably bad. This year alone the Los Angeles County Office of Public Health issued a report outlining for policymakers the role and responsibility hospitals have in driving medical debt and how increasing charity care might stem this problem. 

Photo Source: Business Insider

As patients, and frankly as patient advocates who represent thousands like us, medical debt isn’t an issue that can be swept under the carpet. Entire communities avoid necessary care to protect their financial interests. We’ve personally watched our friends open GoFundMe accounts to cover medical expenses. We’ve helped our loved one’s cover food and light bills to not miss a medical bill. We also well recognize how negative credit reporting from medical debt can hurt people from getting rental housing or a car loan, or even simple necessities. And when thinking about how much we don’t know about what’s behind that $100 billion price tag, the fact that patients face these concerns on the regular is pretty obscene.

We do know there are plenty of good actors in the 340B space. Particularly, Federal Grantee Covered Entities, like Ryan White Clinics and AIDS Drug Assistance Programs (ADAPs). And we know they’re generally great actors because of that transparency in reporting and the oversight offered by their grant contracts. Ultimately, we’re not necessarily asking for a whole lot more than that for literally everyone else who stands to make a buck in the chain between drug manufacturers and patients. Indeed, that trust on Federal Grantees, particularly Ryan White Clinics and ADAPs, is part of why drug manufacturers restricting 340B sales held a carve out for these Federal Grantees. (To be fair and without much public fanfare, years ago, we – as in ADAP Advocacy and CANN – helped to negotiate these carve-outs as part of our advocacy. Our relationship with drug manufacturers isn’t a one-way street as detractors might try and sell you on. 

$100 billion is a lot of money! Is it too much to ask, “Why aren’t patients benefiting more directly from this ever-growing healthcare program?” Facts show that 340B revenues are soaring year after year, yet against the grim backdrop of consistently declining charity care in the impoverished communities needing the most help. To make matters worse, rising medical debt is crushing families. Patients deserve better. People living with HIV who depend on the RWHAP and 340B deserve better! And THAT is why we need reform.

Read our policy reform suggestions here.

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.

New Study Dissects Efficacy of Lenacapavir

By: Ranier Simons, ADAP Blog Guest Contributor

Lenacapavir, a novel HIV treatment medication, again appears in the medical news cycle. A recent article in Medical Express, ‘FDA approves treatment for multi-drug resistant HIV,’ was published on September 1st.[1] The article title would lead the reader to think the drug was just approved. However, the U.S Food and Drug Administration (FDA) initially approved lenacapavir in December of 2022.[2] Gilead Sciences released the medication under the name Sunlenca. Please view the previous ADAP Advocacy discussion of Sunlenca and its background here. So, what happened?

Photo Source: sunlencahcp.com

The impetus for the recent article is newly reported data regarding lenacapavir’s ongoing clinical trials. The August 2023 issue of The Lancet included the story, 'HIV presents an article where researchers discuss week 52 results of the phase 2/3 trial',[3] which discusses the study's results. But just as important is examining the study’s design.

The ongoing clinical trial of lenacapavir is also known as the Capella study, ClinicalTrials.gov number NCT04150068. There are 72 subjects divided into two cohorts. Previous data had been reported for evaluations performed at 26 weeks. In Cohort 1, 36 subjects were randomly assigned oral lenacapavir or placebo on days 1,2, and 8 in addition to simultaneously continuing their failing antiretroviral therapy for 14 days. On day 15, those in the lenacapavir group began subcutaneous lenacapavir once every six months (26 weeks) in addition to an optimized background therapy. On day 15, the placebo group began oral lenacapavir plus an optimized background therapy for one week, then switched to subcutaneous lenacapavir once every six months.[3]

The primary efficacy endpoint was the percentage of patients that had a decrease in the HIV-1 viral load of at least 0.5log10 copies/ml by day 15. In the lenacapavir group, that endpoint was seen in 88% of the patients while in only 17% of the placebo group.[4]  In Cohort 2, 36 subjects were given an optimized background regimen on day 1 along with oral lenacapavir on days 1,2, and 8, switching to subcutaneous lenacapavir once every six months (26 weeks) starting on day 15.

A secondary efficacy endpoint involved viral load. The endpoint was a viral load of less than 50 copies per/ml or a viral load of less than 200 copies per/ml. In cohort 1, at 26 weeks, a viral load of 50 copies per/ml was seen in 81% (29 of 36), and a viral load of less than 200 copies was seen in 89% (32 of 36).[4]  In cohort 2, less than 50 copies per/ml was observed in 83% (30 of 36); and less than 200 copies in 86% (31 of 36).[4] The recent report in Lancet: HIV reports data at the 52-week point. At week 52, 83% (30 of 36) subjects in cohort 1 had HIV-1 RNA of less than 50 copies per mL, and 86% (31 of 36 ) had HIV-1 RNA of less than 200 copies per mL.[3] For cohort 2 at 52 weeks, 72% (26 of 36) had less than 50 copies per/ml, and 78% (28 of 36) had less than 200 copies per/ml.

Photo Source: European AIDS Treatment Group

The overall theme is that the results at 52 weeks support the efficacy of lenacapavir injections every six months for those with multi-drug resistance to retrovirals. Consistent viral suppression was met, and therapeutic drug levels were maintained in the blood between injections. Most importantly, since lenacapavir is to be used with other medications, the injections do not increase pill burden or complicate daily regimens. 

Although the results are promising, there are reasons to research much further before expanding lenacapavir for other uses, such as prevention. The cohort size was very small, at 72 participants. That is partly due to the requirements of the subjects. The participants had to have documented resistance to at least two drugs from at least three of the four major antiretroviral classes in addition to having advanced HIV disease. Additionally, while the data showed no significant safety issues, people living with HIV are known to have hypersensitivity issues with drug reactions. The CAPELLA clinical trial, along with CALIBRATE, a different lenacapavir clinical trial, together only have a total of 229 subjects.[5]

Much larger cohorts need to be examined in order to have comprehensive cross-sectional data to explore gender, age, and ethnicity differences. The complex variances of combination antiviral regimens of multi-drug resistant patients are also a significant concern. Once further lenacapavir research is conducted, the path of its utilization will be more apparent. It could even possibly become paired with another complete long-acting drug, creating an easy-to-use twice-yearly injection for all patients, whether multi-drug resistant or not.[5]

[1] Rivera, Viviana. (2023, September 1). FDA approves treatment for multi-drug resistant HIV. Retrieved from https://medicalxpress.com/news/2023-09-fda-treatment-multi-drug-resistant-hiv.html

[2] FDA Press Release (2022, December 22). FDA Approves New HIV Drug for Adults with Limited Treatment Options. Retrieved from https://www.fda.gov/news-events/press-announcements/fda-approves-new-hiv-drug-adults-limited-treatment-options

[3] Ogbuagu, O., Segal-Maurer, S., Ratanasuwan, W., Avihingsanon, A., Brinson, C., Workowski, K. A., Antinori, A., Yazdanpanah, Y., Trottier, B., Wang, H., Margot, N., Dvory-Sobol, H., Rhee, M. S., Baeten, J. M., Molina, J., DeJesus, E., Richmond, G., Berhe, M., Ruane, P., . . . Rassool, M. (2023). Efficacy and safety of the novel capsid inhibitor lenacapavir to treat multidrug-resistant HIV: week 52 results of a phase 2/3 trial. The Lancet HIV, 10(8), e497–e505. https://doi.org/10.1016/s2352-3018(23)00113-3

[4] Segal-Maurer, S., DeJesus, E., Stellbrink, H., Castagna, A., Richmond, G., Sinclair, G., Siripassorn, K., Ruane, P., Berhe, M., Wang, H., Margot, N., Dvory-Sobol, H., Hyland, R. H., Brainard, D. M., Rhee, M. S., Baeten, J. M., & Molina, J. (2022). Capsid Inhibition with Lenacapavir in Multidrug-Resistant HIV-1 Infection. The New England Journal of Medicine, 386(19), 1793–1803. https://doi.org/10.1056/nejmoa2115542

[5] SHarris, M. (2023). Lenacapavir: an attractive option, but proceed with caution. The Lancet HIV, 10(8), e486–e487. https://doi.org/10.1016/s2352-3018(23)00170-4

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.   

Cardiovascular Disease and Living with HIV...and the Benefit of Statins

By: Ranier Simons, ADAP Blog Guest Contributor

The evolution of HIV treatment has turned HIV into a manageable chronic disease. As such, people living with HIV/AIDS (PLWHA) live longer lives with an expectation of lifespans comparable to those without HIV.[1] PLWHA are now more likely to die from ailments other than HIV. One of those ailments is cardiovascular disease. PLWHA have twice the risk of atherosclerotic cardiovascular disease than the general populace.[2,3] Specifically, the higher risks include heart attack, stroke, heart failure, and pulmonary hypertension.[4] Unfortunately, the reasons for the increased risks are not readily understood. 

Photo Source: AIDSmap

Traditional risk factors for heart disease, such as high blood pressure and smoking, are the same for PLWHA and the general population. However, ongoing research indicates cardiovascular disease risk factors unique to PLWHA, such as the effects of antiretroviral therapy and biological mechanisms of HIV itself, such as chronic inflammation.[4] Lack of a thorough understanding of the increased risk for cardiovascular disease among PLWHA means there is no established way to battle the issue to improve outcomes. Clinical trials are being conducted to investigate means to treat the problem. One such trial conducted is the REPRIEVE trial.

REPRIEVE stands for ‘Randomized Trial to Prevent Vascular Events in HIV.’ The purpose of the phase 3 trial was to investigate the efficacy of statins in reducing the risk of cardiovascular disease in PLWHA. The idea is to use statins as a primary prevention tool for major adverse cardiovascular events (MACE) in HIV. Statin use was chosen as an intervention because research shows statins lower LDL cholesterol, a significant factor in cardiovascular disease. Additionally, statins positively affect vascular inflammation and immune system activation in PLWHA.[3]

The multinational phase 3 randomized REPRIEVE trial, which included the United States, contained 7769 subjects. Assigned to two groups through computer randomization, the subjects received either oral pitavastatin calcium (at a dose of 4 mg per day) or a placebo. Pitavastatin was chosen because it does not interact with antiretroviral medications. The subjects' inclusion criteria included being 40 to 75 years old, living with HIV, on stable antiretroviral therapy, having no previously known cardiovascular disease, and having no history of statin use in the previous 90 days of entering the study. Another important criterion is that all “had a low-to-moderate risk of atherosclerotic cardiovascular disease, as determined by the score on the American Heart Association and American College of Cardiology 2013 Pooled Cohort Equation risk calculator.”[3]

When studies are done, researchers define a primary outcome. The primary outcome is the most essential occurrence to be examined as a result of applying the intervention in question. For the REPRIEVE, the primary outcome was the occurrence of a MACE. The MACE for this study was not just one issue but considered a composite of the existence of many issues: cardiovascular death; myocardial infarction; hospitalization for unstable angina; stroke; transient ischemic attack (TIA); peripheral arterial ischemia; revascularization of a coronary, carotid, or peripheral artery; or death from an undetermined cause, as measured in a time-to-event analysis.[3]

Photo Source: New England Journal of Medicine

In the pitavastatin group, the incidence of MACE was 4.81 per 1000 person-years and 7.32 per 1000-person-years in the placebo group. That equates to a 35% lower MACE incidence in the pitavistatin group.[5] Non-cardiovascular outcomes included muscle and diabetes issues. Myalgia and myopathy occurred in 2.3% of the pitavastatin group and 1.4% of the placebo group. Regarding diabetes, there was a 1.13 incidence rate (5.3%) in the pitavastatin group and a 0.84 incidence rate (4.0%) in the placebo group.[3] This was not surprising since previous research shows that statin use is associated with increased diabetes mellitus as it can increase blood sugar by preventing the body’s proper utilization of insulin.

Additionally, results showed that adverse event rates increased with increasing subgroup risk categories for atherosclerotic cardiovascular disease. However, the number needed to treat (NTT) decreased with rising risk category.[3] This means there is a possible greater benefit of statin use among those who started the study with more baseline cardiovascular risk. NTT is a statistical description indicating how many people need to be treated before a positive outcome is seen. Theoretically, the perfect NTT is 1, meaning that every person treated has a positive outcome. Since the NTT decreased with increasing risk category, more positive outcomes occurred among those with higher levels of diagnosis.

Trials like the REPRIEVE study open the door to investigating the use of other possible statins. Moreover, additional research is imperative since there is currently no established therapeutic or diagnostic paradigm for addressing the increased risk of cardiovascular disease in PLWHA. Without identifying the specific mechanisms contributing to atherosclerotic cardiovascular disease pathology among PLWHA, it is impossible to find or create medical interventions against it.

[1] Hayes, R. (2023, July). Life expectancy for people living with HIV. Retrieved from https://www.aidsmap.com/about-hiv/life-expectancy-people-living-hiv#:~:text=Many%20people%20living%20with%20HIV,adhere%20to%20their%20HIV%20treatment

[2] Boccara, F., Cohen, A. (2016) HIV and heart disease: What cardiologists should know. Revista Espanola De Cardiologia, 69(12), 1126-1130. DOI: 10.1016/j.rec.2016.05.032

[3] Grinspoon, S. K., Fitch, K. V., Zanni, M. V., Fichtenbaum, C. J., Umbleja, T., Aberg, J. A., … Douglas, P. S. (2023). Pitavastatin to Prevent Cardiovascular Disease in HIV Infection. New England Journal of Medicine, 389(8), 687–699. doi:10.1056/NEJMoa2304146

[4] Feinstein, M. J. (09 2022). HIV, Subclinical Cardiovascular Disease, and Clinical Progression: Insights From Immunologic Heterogeneity. JAMA, 328(10), 931–932. doi:10.1001/jama.2022.15226

[5] Susman, E. (2023, July 24). Statin reduced risk of heart disease in people with HIV. Retrieved from https://www.medpagetoday.com/meetingcoverage/ias/105613

[6] Lerner, A. M., Eisinger, R. W., & Fauci, A. S. (2020). Comorbidities in Persons With HIV: The Lingering Challenge. JAMA, 323(1), 19–20. https://doi.org/10.1001/jama.2019.19775

[7] Mulcahy, L. (2023, July 27). Menopause may start earlier for aging women with HIV. Retrieved from https://www.webmd.com/hiv-aids/news/20230627/menopause-may-start-earlier-aging-women-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.   

Aging and Living with HIV

By: Ranier Simons, ADAP Blog Guest Contributor

Since the beginning of the HIV/AIDS epidemic forty-two years ago, medical advancements in HIV prevention and treatment have come a long way. As a result, there is a growing population of older people living with HIV (OPWH). In 2020, about half of all people in the United States living with HIV were age 50 or older. It is estimated that by 2030, that percentage will be over seventy percent.[1] Aging for the general population is challenging. However, emerging evidence indicates specific challenges unique to aging people living with HIV. OPWH are dealing with health care system issues, specific medical challenges, social determinants of health hurdles, and even social stigma.

Photo Source: IDSE.net

Isolation and loneliness are pervasive challenges OPWH reportedly face.[2,3] Many have survived the early years of the HIV/AIDS pandemic. As such, they have seen many of their friends and relatives die from the disease. Living in isolation, among many things, means not having anyone to call on in case of emergency, having no one to care for them when they become ill, and not having any outlet for social interaction. Jim Clay, program lead with Cascade AIDS Project in Portland, Oregon, created several social groups for OPWH under the umbrella of a program called Aging Well.[4] The groups enable OPWH with shared living experiences, such as those who are LGBTQ, to find a sense of community and support. Social integration and support lower the actual and perceived stigma that many OPWH experience.[3] Quality of life challenges regarding psychological well-being directly affect medical outcomes.

Regarding medical outcomes, OPWH are challenged with unique problems. HealthHIV highlighted some of these in their third annual State of Living with HIV National Survey.[1] To be considered for the survey, subjects had to be aged 50 or older or have been living with HIV for at least 15 years. Of those who qualified to be included, 93% were aged 50 or older, with one-third of those older than age 65. Most of the respondents living with HIV for 15 or more years were over the age of 50.

According to HealthHIV, polypharmacy was a medical issue reported by nearly all the included respondents. OPWH have higher rates of multiple comorbidities than the general population.[6] Polypharmacy means taking five or more medications to treat numerous non-HIV comorbidities and HIV. Multiple medications increase the chances of drug interactions with antiretrovirals or other drugs. The different simultaneous medications also cause wear on organs such as the liver and kidneys. Additionally, twenty-five percent of the respondents reported having current antiretroviral side effects, with the majority having had side effects on previous regimens.[1] Moreover, the survey also highlighted that OPWH are more likely to be diagnosed at later stages than younger people with HIV. Half of the respondents were. This is troubling because data shows OPWH have poorer CD4 cell recovery after initiating antiretroviral therapy.[5]

Photo Source: HealthHIV

Evolving research is revealing specific medical challenges for women aging with HIV. Data shows that HIV can cause women to go into early menopause up to 5 years earlier than HIV-negative women.[7] This is due to HIV infection causing chronic infection, immunodeficiency, lower estrogen levels, and metabolic changes due to long-term medication use.[7] Early menopause increases the risk of osteoporosis. This is compounded by the fact that HIV is a known risk factor for osteoporosis.[7] Women with HIV are also three times as likely to have absent periods going into menopause.[7] Instead of gradually easing into menstrual changes, their periods stop abruptly. Women universally deal with the psychological and social stigma of aging. Older women living with HIV have their lived experiences negatively compounded by these medical challenges.

Predominantly, society associates aging with security and being established in life. Unfortunately, social determinants of health are challenging for many aging adults, especially OPWH. Housing, income, food insecurity, and transportation are just a few challenges reported by respondents of the HealthHIV survey. Affordable housing is a problem for OPWH on fixed incomes and those without much or any savings for retirement. One respondent explained that aging adults with HIV have to live where they can afford to.[1] That is the most basic tenet of survival, which influences everything else. Where one lives affects what kind of transportation they need, what sustenance they can afford, and even access to HIV care. If OPWH, out of necessity, have to live far away from their medical care, their medical outcomes are negatively affected. Not being able to access health services results in untimely doctor visits or complete omission, lack of medication adherence, and inadequate treatment of comorbidities. Sixty-eight percent of the respondents were concerned about the lack of permanent housing, and thirty percent worried about the condition of where they lived.[1]

Prevention of new HIV infections among the young and treatment of those under 50 is essential. However, OPWH are being left behind, and they feel it. It is vital to develop geriatric practices and policies to support OPWH. The aging HIV-positive population needs options for care that are more cooperative and convenient instead of fragmented. Their whole being needs to be addressed on a physical, mental, medical, and social service level. Most importantly, their humanity needs to be acknowledged and supported. OPWH are still sexual beings, and there are still cases of people over 50 newly acquiring HIV. Screening for HIV and other STDs/STIs in older adults must be integrated into all aging population care paradigms. The long-term effect of living with HIV is new territory. OPWH should not be left unsupported to deal with it alone.

[1] HealthHIV. (2023, May). State of Aging with HIV Third Annual National Survey. Retrieved from https://healthhiv.org/stateof/agingwithhiv/

[2] McCarty, A. (2023, July 18). 'Fought like hell to get here': Portland group helps long-term survivors of HIV 'age well' through connection and community. Retrieved from https://www.kgw.com/article/news/local/pride/portland-group-long-term-survivors-hiv/283-a110d2ca-af2c-4463-94dc-474c2db2dab3

[3] Petrullo, J. (2023, July 12). Older people with HIV face stigmas, struggles that require action. Retrieved from https://www.ajmc.com/view/older-people-with-hiv-face-stigmas-struggles-that-require-action

[4] Cascade AIDS Project. (2023). Aging Well: About Us. Retrieved from https://www.agingwellnw.org/about

[5] Means, A. R., Risher, K. A., Ujeneza, E. L., Maposa, I., Nondi, J., & Bellan, S. E. (2016). Impact of Age and Sex on CD4+ Cell Count Trajectories Following Treatment Initiation: An Analysis of the Tanzanian HIV Treatment Database. PLOS ONE, 11(10), e0164148. https://doi.org/10.1371/journal.pone.0164148

[6] Lerner, A. M., Eisinger, R. W., & Fauci, A. S. (2020). Comorbidities in Persons With HIV: The Lingering Challenge. JAMA, 323(1), 19–20. https://doi.org/10.1001/jama.2019.19775

[7] Mulcahy, L. (2023, July 27). Menopause may start earlier for aging women with HIV. Retrieved from https://www.webmd.com/hiv-aids/news/20230627/menopause-may-start-earlier-aging-women-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.   

Reflections from an HIV Advocate's Journey: Rev. Alexander Garbera

By: Rev. Alexander Garbera, Co-Chair, New Haven Mayor’s Task Force on AIDS 

Life is a circle.  I remember spiking high fevers and having strange rashes in the Summer of 1980 while working on a Psychology master’s degree at Stony Brook University. It was a mystery. Cell phones and the Internet did not exist as we know them today. Information was scarce, and LGBQT persons led a shadowy existence. It seemed that attempted suicides were on the rise, and I believed part of the problem was isolation and a general distrust of established counseling centers.   

I thought creating a dorm-based counseling service might help individuals struggling with gender and issues of sexuality more accessible. A poster hanging outside my dorm door announcing the first meeting was set on fire. It burned through, and if I had been sleeping at that time, I would probably not be writing this blog today. 

Photo Source: Stony Brook Satesman Vol. 23 No. 61 3/14/1980

I was traumatized. The words of the security guard are imprinted in my brain: “You’re a big boy, you can handle it.” It wasn't until the past few years I’ve really become keenly aware of trauma and how it affects us. The counseling project was put on hold and full attention was given to completing my studies, graduation and corporate ladder climbing. 

Having always been health conscious, I regularly checked into a STD clinic every six months. Something seemed strange though around 1984. The Long Island free clinic was re-designed and once open cubicles were now fully shielded by plexiglass. Even-though I never tested positive for any STDs, I was told: “you should go to New York City where homosexuals go. I should go to a homosexual clinic.” I hadn’t the slightest clue why or where to go.  

Employment brought me to CT instead. I found a gay physician and buried myself in my work. When at a Boston training seminar, I met someone. He wanted to move to CT, and so we decided to begin a healthy relationship, starting off with the new HIV test that just came out in 1986. I tested positive and was shocked, after all, I never had tested positive for any STDs… my partner at the time was extremely supportive. He said it did ‘t make a difference to him as he was putting together a portable BBQ grill.   His test results came a week later, also positive. Thus, a journey began but the healthy relationship soon turned out to be anything but. He never wanted to talk about it and didn’t want anyone to know. He acted out by drinking and I acted out by trying to control his drinking.   It was a volatile drama that catapulted me into Al-anon to return the focus onto me and my own sanity. 

At that time New Haven had a very large, strong, vibrant Gay AA and Gay Al-Anon groups that would periodically have joint meetings and annual convention called a Round-Up. It was a godsend. People talked about everything, well almost everything. Nobody mentioned the words HIV or AIDS, and I knew I wasn’t the only one. There is an Al-Anon slogan “Let it Begin With Me” and so I did start talking about my HIV. First at local group meetings, then at Round-Ups in Connecticut and Provincetown, giving workshops on being HIV positive and in recovery. Over the years individuals would bring it up claiming it saved their life.   I was appreciative but always reminded them the life they saved was of their own doing. (I have issues with compliments)

I didn’t do it to help others so much as it was necessary to talk about the feelings of living with HIV, being ejected from a dentist after disclosing my status, navigating life. The gay physician I was seeing frowned when I mentioned taking vitamins and things to boost natural immunity, so I switched to the new HIV clinic at YALE New Haven Hospital.   

It was so new they initially did not have a physical space for people with HIV/AIDS. We were combined within the Gerontology clinic. So, there I was a young gay man in his early 30’s, with an oxygen tank breathing aerosolized pentamadine next to an elderly man hooked up to his oxygen tank looking at me very puzzled wondering what I was doing there.

It also seemed that I never got to see the same provider more than once and felt very disconnected from my own care. When I attended a talk by Dr. Gary Blick, MD who mentioned a more holistic, cutting edge and educational approach I knew that as the right match for me. 

Life is a circle. Thinking of that old man looking at me seems ironic. I am now a senior, over 65 – but not requiring assisted breathing yet.   

In the recent past there have been a slew of workshops/ seminars on HIV and aging, responding to the fact that most people living with HIV are living longer and are now over 50 years old. 

This may seem intuitive as medication’s become less toxic and easier to take. It is not as simple as one might assume. A relatively recent study created headlines that “HIV May Speed Up the Body’s Aging Process” 

Yet, I am not seeing much structural adaptation to our aging HIV population, and non-HIV related medical research tends to exclude people with HIV.   

Accelerated aging issues and increased susceptibility to conditions more prevalent for older persons is not news for those long-term HIV survivors actively engaged in managing their health outcomes. Just as issues of HIV stigma and social isolation echo what many elderly faces. 

The accelerated aging process is what horrified people in the early days of the pandemic — before HIV’s discovery — as young gay man was exhibiting symptoms and dying of rare diseases more typical in elderly populations, particularly around the Mediterranean region. Now that we understand more about HIV and people with HIV are living longer there seems to be much less sense of horror giving way to apathy and ageism.   

We didn’t have the luxury of apathy “back in the day”— a phrase I lifted from a young nurse asking me questions about the 1980’s before he was born. Death was in our face.  People are still dying, but in far fewer numbers. We have also become more clinical about death, even secretive under the cloak of HIPPA and it no longer sparks any outrage. 

Back then, radical right preachers said AIDS was sent from God to punish homosexuals and drug users  (which probably is still around however unspoken). My response was that if it was sent by God, it was sent as a spotlight on our will to live and love ourselves and each other. Perhaps a test of our compassion and readiness of our social and medical institutions.   

Picture: 2006

In a chapter title “Living with Insanity” from Stories From the Other Side: Thematic Memoirs I wrote: “I think HIV/AIDS is here to teach us a few lessons. My fear is that unless we learn them, it is not going to go away and something worse will come along if we keep our heads buried in the sand.”  This came from a metaphysical principle that the lesson never goes away until it is learned.

As a spotlight, HIV has and continues to shine light to many of our phobias and isms: homophobia, transphobia, sexphobia, racism, classism, colonialism, ageism (to name a few) and all the intersections where they inevitably meet.   

If HIV is viewed as a spotlight on aging, it needs a very wide lens. Covid-19 raised the social isolation alarm to a deafening silence.  It wasn’t too long ago that the surgeon warned that loneliness is as dangerous to one’s health and longevity as smoking a pack of cigarettes a day. 

Upon hearing this and knowing the issues of increased susceptibility to certain illnesses and cancers correlated with HIV, the U.S. Surgeon General’s report almost made me want to smoke cigarettes.  

Of the many diverse long-term survivors, I know one of the shared themes is a strong unmet need for socialization, meaningful social interaction, intimacy, and lighthearted fun.

It is curious that in the early days of HIV there was less funding yet more community activities — at least in CT — such as weekend spiritual retreats, support groups, interfaith services, and healing circles. 

While it takes planning and resources to create relevant accessible senior support/socialization groups and creating supportive HIV senior housing, perhaps going back to the early days of HIV buddy programs would be a good/easy place to start?

Another difficult need is finding gerontological expertise in concert with expert HIV care. 

These structural changes require educating our aging HIV population as well as using trauma informed care to address complex post traumatic stressors (CPTSD) from accumulated of years of living with HIV. There are many levels of trauma and HIV stigma, and some can be very scarring, making isolation, however deadly, deceptively preferable. 

Very early on, when many PLWHAs were given only a few months to live, it was clear that survival alone was insufficient. Quality of life matters. 

The word “heal” means “to make whole.” We know what works, and in addition to medication supportive services such as housing, mental health, nutrition is crucial, just as addressing the disparities in health care and outcomes.  

There was a time when HRSA funded complimentary therapies such as medical massage, nutritional supplements, chiropractic care and acupuncture. These therapies helped PLWHAs deal with systemic inflammation, medication side effects, pain, and mobility issues.

With the war launched against opiate abuse I see very little of these alternatives coming back — and pain management an increasing nightmare. I wonder why the proceeds from opiate related lawsuits aren’t being channeled back into holistic therapies.

Quality of life also requires integrating life extension research factoring aging issues as well as the metabolic and inflammatory demands HIV incurs. Current programs directed at the health and well-being of clients such as nutritional programs need adjustments accordingly.  

HIV Aging issues are not academic. They may seem daunting, but the good news is there is much room for growth, change and novel approaches. 

Looking back at everything I would say that one should never underestimate the importance of being able to make a difference in one’s own life and others. Just as Margaret Mead said: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.”

If people were terrified when young persons were getting old people’s diseases and now those young-ins are old, can we re-ignite, or even approach, the same level of urgency, action, and care?

Picture: 2023

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.