Giving Thanks

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

In 2021, we started a new tradition by "giving thanks" to the things important to our organization, as well as me, personally. All too often we get caught up in the nuances of our advocacy work, and monitoring the dysfunctional legislative logjam that has become commonplace in our nation's capital (especially, keeping an eye out for dangerous legislation, such as S.4395), as well as chasing potential funders so we can keep the proverbial lights on. This tradition was started, in large part, because we lost our Lion of the modern-day HIV/AIDS advocacy movement: Bill Arnold. 

Eddie Hamilton (l) with Bill Arnold (r)

Sadly, we lost another giant personality in our ongoing fight to end the HIV epidemic. On July 12th, Edward "Eddie" Hamilton passed from this life into the next, but not without leaving his mark on many of our lives. Eddie was special because held state and local health departments to account; he held commercial healthcare providers and retail pharmacies to account; he held community-based organizations to account; he held advocacy coalitions to account; and he also held all of us to account, always reminding anyone who could hear his voice why we are here doing this work…for the patient. But I'm giving thanks for having known such a wonderful, unique, and complicated human being.

Next, I'm giving thanks to the VOTERS (...well, a majority of them) because they rejected the politics of anger, division, hate, and violence! Our Democracy is too sacred, too important. Two years ago, we witness a former president desperately clinging to power incite a seditious mob to attack the very symbol of our government. The law enforcement sworn to protect our government officials were beaten; people died. Yet, we didn't forget about it and on November 8th, America said...enough!!!

That statement was pretty intense, but it needed to be made.

I'm also giving thanks to Phil, Wanda, Jen, Eric, Lyne, Hilary, Lisa, Glen, Jennifer, Theresa, and Guy. As my board of directors, they embody a commitment to excellence. Some of these folks have served in their leadership role for many years; others, only a few. Collectively they have contributed so much of their experience, knowledge and passion into making the ADAP Advocacy Association more effective as a patient advocacy organization. I'm also giving thanks to our longtime board member, Elmer Cerano, who recently stepped-down from our board of directors after serving for fourteen years! He was our compass, always ensuring that we never veered from the path our mission.

This year, we embarked on an ambitious project to advance better patient advocacy surrounding access to HIV Long-Acting Agents (LAAs). Our ADAP Injectables Advisory Committee included Michelle Anderson with the Afiya Center, Tori Cooper with the Human Rights Campaign Foundation, Donna Sabatino with The AIDS Institute, Jennifer Eliasi MS, RD, CDN with Theratechnologies, Marcus Hopkins with Appalachian Learning Initiative, Jen Laws with the Community Access National Network (CANN), Warren Alexander O'Meara-Dates with The 6:52 Project Foundation, Dawn Patillo-Exum with Merck, Glen Pietrandoni, R.Ph with Avita Pharmacy, Cindy Snyder with  ViiV Healthcare, Alex Vance with the International Association of Providers of AIDS Care (IAPAC), Marcus Wilson with Janssen Pharmaceutical Companies of Johnson & Johnson, and Joey Wynn with the Florida HIV/AIDS Advocacy Network (FHAAN). I'm giving thanks to each and every one of you for the amazing work you completed on our behalf!

In last year's thankful reflection, I said: "The dogmatic claims that industry funding is paramount to a bride are not only unfounded, they're also unhelpful to our collective efforts to improve access to care and treatment." It still holds quite true, and thus why I'm giving thanks to our industry, and non-industry funders, including AbbVie, AIDS Alabama, Avita Pharmacy, Bender Consulting Services, Brii Biosciences, Bristol-Myers Squibb, Community Access National Network, Gilead Sciences, Janssen Pharmaceutical Companies of Johnson & Johnson, Magellan Rx Management, Maxor National Pharmacy Services Company, MedData Services, Merck, Napo Pharmaceuticals, North Carolina AIDS Action Network, Novartis, Partnership for Safe Medicines, Patient Access Network Foundation, Patient Advocate Foundation, PayPal Giving Fund, Pharmaceutical Research and Manufacturers of America, Ramsell Corporation, ScriptGuideRx, Theratechnologies, ViiV Healthcare, and Walgreens. Giving thanks to our small donors, too. You could donate to so many other charities, yet you choose to support us!

Sebastian Ryan Macsata

And once again, I'm giving thanks to my four-year son, Sebastian. Being your Pa Pa is the most joyous part of my life and I couldn't imagine a day without your smile starting off my day. I'm thankful for being able to witness your innocence, because it reminds me that there is still good in this crazy world.

Finally, giving thanks to YOU for reading our blogs every week. Happy Thanksgiving!

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.  

Gay and Bisexual Youth Account for Almost 80% of all New HIV Infections Among Their Age Cohort

By: Ranier Simons, ADAP Blog Guest Contributor

The HIV epidemic is far from over. In spite of advances in antiretroviral drug treatment regimens, public-private funding partnerships, and continued outreach and education efforts; the number of new HIV infections each year remains unacceptable. In 2020, 30,635 people aged 13 and older received an HIV diagnosis in the United States.[1] The age group 13-24 accounted for 57% of new diagnoses.[1] Moreover, among teens, gay and bisexual youth account for almost 80% of all new HIV infections.[2] Public health initiatives and advertising have targeted adults but have been lacking in regard to teens and youth.

Photo Source: HIV Plus Magazine

A recent three-month study, published in the journal AIDS and Behavior, attempts to explore ways to effectively reach part of this group, specifically gay and bisexual young men. The premise is that parents can be used as an effective resource to prevent HIV in this demographic. David Huebner, Professor of Prevention and Community Health at the Milken Institute School of Public Health, George Washington University with a team gathered 61 parents of cisgender sons aged 14-22 who had come out as gay or bisexual at least one month before the study. Set up as a randomized trial, the study split the parents into two groups. In the control group, parents watched a 35-minute documentary that was designed to help parents understand and accept their gay children.  The other group was enrolled in an online program called PATHS (Parents and Adolescents Talking about Healthy Sexuality).[2] The program consisted of videos and structured instruction to help parents more effectively communicate with their gay or bisexual sons about staying healthy and how encourage sexual health. 

Photo Source: National Minority AIDS Council

The instruction took into consideration that the parents were not a monolith and had differing levels of comfort in communicating with their children. Thus, the tasks the parents were given allowed some parents to be more indirect and others to be more direct. For example, for educating their sons about condom usage, parents could either text their sons an instructional video or they could physically demonstrate how to properly apply a condom using a banana. In regards to HIV, parents had the option of sending their sons a fact sheet about the risks of HIV or actually sitting down with them and reviewing it together. Most importantly, parents were educated on how to help their sons get HIV tests and why regular testing is important.

The study showed that parents who were engaged in the online program had more quality interactions talking with their sons about sexual health and helped their sons obtain HIV tests than the parents who were simply shown the documentary on acceptance. The research team wants to show that direct intervention with parents will result in better sexual health outcomes for the gay and bisexual sons. With funding from the National Institute of Mental Health, a larger study will be done. This study will be a year-long study of 350 parent-adolescent dyads to see if structured parental instruction actually reduces HIV risk for gay and bisexual adolescent men.

Photo Source: HIV.gov

April 10 is National Youth HIV/AIDS Awareness Day (NYHAAD). It is designed to raise awareness about the impact of HIV on young people. HIV.gov offers numerous resources and tools to leverage digital communication tools and social media to reach out to youth with prevention, testing, and care messages.

Parents are a previously untapped resource to utilize in HIV prevention efforts among young gay and bisexual males. It is important to not only facilitate changing parents attitudes and understanding of their gay and bisexual sons, but to teach them the actual tools necessary to effectively intervene in the youth’s lives. Multilevel life skills intervention in the home will hopefully lead to better sexual health choices and outcomes as the youth navigate the world around them.

[1] HIV.gov.(2022, October 27). U.S. Statistics. Retrieved from https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics
[2] Henderson, E. (2022, November 2022). Parents represent a promising resource in preventing HIV among gay and bisexual male youth. Retrieved from https://www.news-medical.net/news/20221110/Parents-represent-a-promising-resource-in-preventing-HIV-among-gay-and-bisexual-male-youth.aspx
[3] Huebner, D.M., Barnett, A.P., Baucom, B.R.W. et al. Effects of a Parent-Focused HIV Prevention Intervention for Young Men Who have Sex with Men: A Pilot Randomized Clinical Trial. AIDS Behav (2022). https://doi.org/10.1007/s10461-022-03885-1

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. 

Non-AIDS-defining Cancers Among People Living with HIV/AIDS

By: Ranier Simons, ADAP Blog Guest Contributor

The advent of combination antiretroviral therapy (ART) has greatly improved the lives of people living with HIV/AIDS (PLWHA). ART has reduced HIV infection related morbidity and mortality overall and reduced the rates of AIDS defining cancers.[1] AIDS defining cancers are those that PLWHA are at a high risk for developing. When they develop these cancers, it usually means they have advanced from HIV to AIDS. Kaposi sarcoma, certain types of non-Hodgkin lymphoma, and cervical cancer are examples of AIDS-defining cancers.[2] In contrast to ART’s reduction of AIDS-defining cancers, while the risk is decreasing, the incidence of non-AIDS-defining cancers remains.[2] Non-AIDS-defining cancers are those that are more likely to appear in HIV-positive people. Lung cancer is the non-AIDS-defining cancer that appears the most. A recent study indicates that PLWHA remains at a higher risk and incidence of lung cancer compared to the population at large.[3]

Photo Source: pratidintime.com

The study does not fully explain the causality of the higher incidence, however it does shed more light onto what is occurring. The U.S. National Cancer Institute performed a population-based registry linkage study using 2001–2016 data from the HIV/AIDS Cancer Match study, which links data from HIV and cancer registries from 13 regions in the USA.[4] There were 4,310,304 subjects followed in the study. During the study span 3,426 developed lung cancer. Compared to the general population, the data showed that PLWHA in their 40’s have twice the risk of developing lung cancer, PLWHA in their 50’s were 61% more likely, and PLWHA in their 60’s were 30% more likely to develop lung cancer.[3] It also noted that lung cancer surpasses Kaposi’s Sarcoma and Hodgkin’s Lymphoma as the leading cancer in PLWHA over the age of 50. That is a notable distinction given that Kaposi’s Sarcoma and Hodgkin’s Lymphoma are AIDS-defining cancers.

One factor contributing to the increased lung cancer incidence is smoking. Tobacco smoking rates are much higher among PLWHA than the general population.[5] There is evidence-based consensus that the lungs of PLWHA are especially susceptible to the harmful effects of cigarette smoke.[6] Additionally, due to HIV infection, their bodies are already in a constant state of inflammation. Cigarette smoking does not completely explain the higher lung cancer risk. Immunosuppression is also a factor. Although ART is very effective, there is still some immunosuppression due to HIV infection. By 2013-2016, half the study population had been living with HIV for at least ten years.[7] Researchers also found that the prognosis was worse and risk high for PLWHA who at any point previously had an AIDS diagnosis.[3] 

Photo Source: DCTCF

Medical research is continuing to investigate the etiology of lung cancer in PLWHA. Meanwhile, prevention is paramount. Most early lung cancer is asymptomatic. Thus, discovering cases early through screening before symptoms are seen will result in better outcomes. For some types of lung cancer, the survival rate is around 90% when tumors are discovered while small.[3] In the U.S., screening of adults with a smoking history, aged 50-80, is already recommended. The growing consensus is that screening of PLWHA needs to start earlier. Moreover, HIV status should be considered for inclusion in the entry criteria for lung cancer screening programs.[8]

[1] Moltó, J., Moran, T., Sirera, G., & Clotet, B. (2015). Lung cancer in HIV-infected patients in the combination antiretroviral treatment era. Translational Lung Cancer Research, 4(6), 678-688. doi:10.3978/j.issn.2218-6751.2015.08.10
[2] Cedars Sinai. (2022). AIDS-Related Cancers. Retrieved from https://www.cedars-sinai.org/health-library/diseases-and-conditions/a/aids-related-cancers.html
[3] Hudson, D. (2022, October 16). People with HIV are at twice the risk of lung cancer, study finds. Retrieved from https://www.queerty.com/people-hiv-twice-risk-lung-cancer-study-finds-20221016#.Y2J6PmVsaPA.twitter
[4] Engels, A. et al. (2022). Trends and risk of lung cancer among people living with HIV in the USA: a population-based registry linkage study. Lancent HIV, 9(10), 700-708. https://doi.org/10.1016/S2352-3018(22)00219-3
[5] Centers for Disease Control. (2022). People Living with HIV. Retrieved from https://www.cdc.gov/tobacco/campaign/tips/groups/hiv.html
[6] Rahmanian, S. et al. (2011). Cigarette smoking in the HIV-infected population. Proceedings of the American Thoracic Society, 8(3), 313-319. https://doi.org/10.1513/pats.201009-058WR
[7] Alcorn, K. (2022, October 11). Risk of lung cancer is higher for people with HIV. Retrieved from https://www.aidsmap.com/news/oct-2022/risk-lung-cancer-higher-people-hiv
[8] Hein, I. (2022, October 6). Lung cancer declining in people with HIV, but still high. Retrieved from https://www.medpagetoday.com/hivaids/hivaids/101100

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. 

Start Antiretroviral Therapy Sooner Than Later

By: Ranier Simons, ADAP Blog Guest Contributor

As medical science strives towards eradicating HIV, research and discourse regarding treatment and prevention continue to evolve. Antiretroviral therapy (ART) is the primary method of treatment. ART is drug therapy consisting of various combinations of medications whose purpose is reducing the HIV viral load in the body. The ultimate goal is to reduce the viral levels in the body to the point of being undetectable. Undetectable means that the viral load is so low that a viral load test cannot detect it.[1] Reaching undetectable status means that a person has no risk of sexually transmitting HIV to others, commonly referred to as "U=U" (undetectable equals untransmittable). Research has also shown that maintaining undetectable status enables people living with HIV/AIDS (PLWHA) to live long, healthy lives. 

Photo Source: Very Well Health

The timeline of starting patients on treatment is an ongoing inquiry at the forefront of ART discourse. In addition to viral load, historically, many other factors have been considered when starting PLWHA on drug therapy. Those who are asymptomatic and seemingly very healthy with good CD4 counts sometimes don’t see the benefits of starting early treatment out of concerns about possible long-term side effects and emotionally handling the prospect of lifetime medication adherence.[2] Notwithstanding various psychosocial, financial, and logistical issues, the main clinical criteria inquiry is the CD4 count. 

CD4 cells are white blood cells in the body that help the immune system to fight infection. HIV attacks and destroys CD4 cells.[3] An insufficient number of CD4 cells leaves the body susceptible to many forms of illness that healthy HIV-negative people are protected against. PLWHA are diagnosed with AIDS when the CD4 count reaches 200 cells/mm3.AIDS diagnosis means a high risk of developing life-threatening illnesses or even cancers.

Over time consensus has evolved regarding the appropriate CD4 count threshold for beginning ART. For a long time, the established guidelines recommended ART to begin when CD4 counts dropped below 350 cells/mm3 or if a patient had symptoms of AIDS. In December 2009, U.S. guidelines were issued, including a recommendation that ART commences if the CD4 count is between 350 and 500 cells/mm3.[4] However, that recommendation was based on observational studies, not randomized trials, in the manner that previous guidelines were developed. A randomized trial results in more definitive information since randomization means groups tested are very similar except for received treatment.[4]

To obtain randomized trial results concerning early ART intervention, the Strategic Timing of Antiretroviral Therapy (START) trial was first initiated in 2009, enrolling 4,684 HIV-positive patients (median age 36, 27% women), who had a CD4 count of ≥500 cells/mm3 (median 651 cells/mm3 ) at least two weeks apart within the 60 days before enrollment. Of these patients, 2,325 were randomized to start ART immediately, and 2,359 were randomized to defer treatment until their CD4 count was ≤350 cells/mm3.[5] Subjects were followed for a minimum of three years. START is a multinational endeavor.

Photo Source: everydayhealth.com

In 2015, results were published in the New England Journal of Medicine. Data showed that early initiation of ART lowered the risk of severe AIDS-related outcomes, serious non-AIDS-related outcomes, and death by 57%.[4] When the results were published, the subjects who had previously been in the deferred ART group started drug therapy. Another analysis was done in October 2022, which included 4,436 patients who were followed from January 2016 through December 2021. This analysis supported the benefits of starting ART early, even for patients with CD4 counts over 500 cells/mm3 at diagnosis. An additional finding was that adverse outcomes of delayed treatment were more pronounced in patients aged 35 and younger.[4] Research is continuing to examine the outcome difference by age.

Given that the START study shows the importance of early initiation of ART, it is imperative to increase efforts to identify HIV-positive patients. Many people don’t find out until clinically, a lot of damage has occurred. By increasing testing efforts, especially for those in higher-risk groups, HIV infection can be caught at earlier stages, and patients can initiate therapy. Early therapy means a much lower risk of AIDS progression, fewer instances of non-AIDS-related serious issues, and shorter time spans to reaching undetectable status. Diagnosing people earlier means a better quality of life for those infected and an expedited reduction in the number of people with viral loads high enough to be a transmission risk.

[1] National Institute of Health. (2021, August 16). HIV Treatment. Retrieved from https://hivinfo.nih.gov/understanding-hiv/fact-sheets/when-start-hiv-medicines#:~:text=When%20is%20it%20time%20to,possible%20after%20HIV%20is%20diagnosed
[2] Ross, J. et al. (2021) How early is too early? Challenges in ART initiation and engaging in HIV care under Treat All in Rwanda-A qualitative study. PloS one, 16(5), e0251645. https://doi.org/10.1371/journal.pone.0251645
[3] National Institute of Health. (2022, August 22). CD4 Lymphocyte Count. Retrieved from https://medlineplus.gov/lab-tests/cd4-lymphocyte-count/
[4] Hein, I. (2022, October 25). Start HIV Antiretroviral Therapy ASAP, Experts Urge. Retrieved from https://www.medpagetoday.com/meetingcoverage/idweek/101419
[5] National Institute of Health. (October 4, 2022). Strategic Timing of Antiretroviral Treatment (START). Retrieved from https://clinicaltrials.gov/ct2/show/study/NCT00867048

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.