HIV Community Social and Educational Support
I have previously posted summaries of the 3 day conference in Brisbane Australia for the International AIDS Society Science Conference. They have just released open access to all of the content from the conference. I thought some of you might have an interest in the raw content as we try and learn more to better understand the challenges of HIV. Good stuff on progress to a cure, cardiovascular risk and other fun stuff. Enjoy!
Day 2, or what I’ll call the “So What” day 😉
The conference, was held this year in a brand new Johns Hopkins facility located right on Pennsylvania Avenue just down from the Capital building. This used to be the Newseum, a museum dedicated to freedom of the press. While it is sad to see that close, this is a great place for learning in the center of official Washington! An it opened the day before the conference started, much to the relief of the organizers…thats it on the left of the photo.
Day 2 opened with a discussion on cardiovascular risk for PLWH. Much of the discussion was around scientific theories driven by things like changes in inflammation, telomere length, (a DNA related sign of aging), changes in the microbiome and various impacts of immune activation. I didn’t take away any real evidence of a change in treatment of behavior for PLWH except for previously reported results of adding a statin (up to 35% reduction in cardiovascular problem) and the theme of diet and exercise.
This session ended with a presentation on the endocannabinoid system of receptors in the cody and the possible positive impacts of using marijuana derivatives to stimulate this system. Lots of study in this area by our local researchers at UCSD HNRP but there was specific advice not to smoke as that does more damage in and of itself than the potential benefits.
We then moved on to a discussion of the pharmacokinetics related to long acting medications. I found this discussion to be both fascinating, encouraging and worrying all at once. I had wondered how long acting medications worked in the body and the explanation is represented in the picture here:
Once the drug is injected the small nodules are surrounded and a node is created that will gradually release the medication over time. Way over simplification, but hopefully you get the point. As for concerns that the changes in the body due to age, changes in lipid distribution and intramuscular fat deposits in te body dont impact the levels of medicaito in the body. In studies of this type of medication introduction, a 103 year old patient had the same levels of medication as a young person. I did ask what the implications were with concerns over polypharmacy with a patient base who change medical providers over time and determining what long acting medications may be present and whether adding more could cause issues. The presenter acknowledge that this had not been addressed and was also concerned with timely dosing in this scenario. Offline I suggested that drug companies would need to provide test kits to determine the presence and durability or long acting drug in the body in order to accurately prescribe for new patients. The feeling was that drug companies would push back on this so it might be an avenue for future advocacy from the community.
The day then moved on to a discussion of Asymptomatic Neurocognitive Impairment (ANI) in aging PLWH. Are there changes in brain and nervous system function that can be detected prior to the onset of HAND or other more visible and irreversible conditions? While the answer is yes, there is no real consensus of what can be done clinically to address this. This presentation was followed by a debate (think crossfire) between researchers debating whether testing for ANI should be part of the standard of care.
To simplify the arguments, the pro testing side was based on the sense that knowledge is power and knowing that there was early impact and likely progression a patient could prepare and work to challenge themselves through stimulus, mind games and life preparations, watching for signs of progression to seek treatment. The negative side was more clinical in nature and based on whether you should test for something you can’t treat, as well as the possible stigma in work or other situations of having the diagnosis on your record. Most of the community members in the room seemed to fall into the pro testing side and clinicians nervous about diagnosis they can’t address.
The remainder of the day was more community led. First was a discussion of resilience, both personal and at a community level. To put the discussion in context, here is a definition of resilience from the US National Institute of Standards and Technology (NIST);
“Community resilience is the ability to prepare for anticipated hazards, adapt to changing conditions, and withstand and recover rapidly from disruptions. Activities, such as disaster preparedness—which includes prevention, protection, mitigation, response and recovery—are key steps to resilience.”
The presenter was both a community member and researcher, so had a shared perspective. I wish this photo was better, but here is what he discussed:
He talked about how community response, like ACT-UP in the early part of the epidemic as well as treatment advocacy that resulted in our early access protocols for new drugs and community trials networks like the ACTG, which was used to test COVD vaccines and treatments as well. He talked about the importance of personal resilience and the impact of personal primary (close) and secondary (friendship) relationships and how our chosen families have helped PLWH survive. The discussion moved from there to a panel of community members representing current active organizations, including Christie’s Place here in San Diego that are providing the services and resilience in our communities today. Takeaways for the researchers included a need to include PLWH in the planning and execution of research. IT was also noted that the community most likely to be involved in research is mostly over 50 and engagement NOW is important as we will not be around forever The next generation has a very different sense of HIV as a treatable disease and is more focused on prevention than treatment.
Finally, there was a panel of local activist frot eh DC area who were advocating to include the community at all levels and on more panels in future years, as well as discussing challenges in treatment and in programs like the Ryan White CAre which continue to grow less relevant to the current state of the epidemic.
All in all a good workshop. In discussions with attendees, I would expect POZabilities to become more involved in HIV and Aging research and in programs like the 50+ advocacy work of groups like the National Minority AIDS Council (NMAC). More to come.
Ended my stay in DC with a walking tour of the area, and a required stop by the Q St Barbie Pool 🙂
Over the past 2 days, i attended the HIV and Aging workshop at the ne Johns Hopkins building in Washington, DC (the former Newseum). While there were no major releases of new information, the conference was thoughtfully planned and covered a number of important topics worth passing on. The conference was held in a hybrid format and was one of the more successful hybrid events I’ve attended in a while. Dr Joseph Caperna attended many of the sessions virtually (do you sleep?) and has contributed to this blog. The researchers at UCSD ACRC and HNRP were among the organizers and were well represented in the discussions.
The conference covered a number of key topics; Sarcopenia and Mental Health issues on day one and long acting medications, cardiovascular implications and neurocognitive impacts on day two. There were also poster lightning sessions allowing exciting young researchers from around the world to present summaries of their research projects.
Sarcopenia, Exercise and Accelerated Aging
A general definition of Sarcopenia is ‘age-related loss of muscle mass and strength.’ There is no consensus on the definition, how to diagnose, what tests to use, or how to prevent the condition; however that’s not to say there is nothing that can be done to positively impact the condition.
The session began with an overview of changes in muscle composition in aging, mostly non-specific to HIV. Basically, as we age the types of muscle fibers slowly change from those most suited for speed and strength to fivers whose characteristics include endurance and slower response. There is also an increase in fat infiltration in the muscle fiber, leading to lower muscle mass. The other speakers talked about how to measure and the impact of exercise and nutrition as the most effective approaches to slow and recover from muscle loss. Dr Jung focused on the impact on Mitochondria which are important in that they have a key role in providing power and regeneration/recovery of muscle tissue. As we age or suffer damage to the function of these cells (such as with the old “D” drugs) we see loss of muscle mass and strength. Exercise is important in building and retaining mitochondrial function and thus muscle mass and strength. It appears that HIIT (High Intensity Interval Training) is most effective in stimulating these cells where normal exercise may have little or no impact. This does not suggest a lack of benefit to lower intensity exercise, it just means it may have limited impact on mitochondrial function. With apologies for the photography challenges, here is a slide I found informative on the impact of diet and exercise on weight related issues.
A lot of the morning discussion was around the early onset of frailty in PLWH and the impacts of both HIV and medication on accelerated loss of muscle mass and strength. It is worth noting that several speakers touched on the fact that while undetectable viral load does mean that the viral particles present in the body may not be able to reproduce and cause a new infection, they are still present and these non-reproducing virus particles may still have an impact on the body with regards to an inflammatory response for example. It was not clear that there is a good understanding of this phenomena.
Mental Health and Cognitive Frailty IN PLWH
The second half of Day One was a session sponsored by the NIH institute on Mental Health and the Division of AIDS. While a lot of this was basic science and not really actionable clinically, there were a few interesting observations that struck me as worth pursuing. Here is the agenda the NIH provided for their work on HIV and mental health issues:
The impact of depression on accelerated cognitive decline appears to have almost the same impact on mortality among PLWH as does adherence to ART. This points to the criticality of identifying and treating symptoms of depression in PLWH as part of the standard of care.
There was a good deal of discussion around the impact of perceived quality of life, stigma and the impacts of access to quality food, housing and a safe environment on the degree of cognitive frailty. While there was the usual discussion of medication intervention, the impacts of both exercise and diet were significant, both from a medical and perception of quality of life. A lot of really good basic science information presented but little truly actionable beyond what I’ve mentioned. We need to ensure people have access to teh basics of living; food, clothing, shelter and can spend time keeping themselves healthy and as active as they are able. We also need to ensure we identify and treat depression.
Day 1 ended with dinner at one of my old favorite restaurants in DC, Cuba Libre…
From POZ magazine. I wonder if this article discussing studies showing ongoing HIV activity even when virally suppressed indicates a potential cause for accelerated aging in People Living with HIV?
https://www.poz.com/article/latent-hiv-triggers-immune-activation-despite-treatment
OVer the past couple of weeks I’v had a similar conversation with a number of San Diego long term HIV survivors. The majority of People Living with HIV (PLWH) in San Diego are over 50 and and an increasing number are over 60. This has many of these folks, either on disability or as they age, receiving medical care through the Medicare programs. Many have chosen Medicare part C, or a Medicare Advantage Plan. Part of the reason for this is cost, as these programs tend to keep out of pocket costs low, and many aging PLWH are on limited income. Another factor is that many are HMO plans which eliminate the hassle of dealing with in/out of network issues, high deductibles and co-pays. A lot of these folks reside in or near the Hillcrest hub of the LGBTQ+ community, and so the proximity to Scripps was a major deciding factor in choosing to get their care there, and the care is good. Kaiser also provides good HIV care, but has no facilities that are easy to get to from Hillcrest if you rely on public transportation. UCSD or a small number of private practice physicians are available as well, but can they readily absorb all of the people now leaving Scripps? The alternatives that Scripps is offering are reportedly more costly to patients than their previous plans, with all of the complexity of standard Medicare supplemental and the challenge in getting medication coverage for pre-existing conditions.
I am disappointed in Scripps for essentially abandoning this and other communities of aging San Diegans and hope to see them help to place their former patients and ensure continuity of care.
This is some original artwork which themed all of the sessions at IAS this year. As is the custom in Australia, we acknowledge the Jagera people and the Turrbal people as the Traditional Custodians of Meanjin (Brisbane), the land on which IAS 2023 is taking place. We pay our respects to Jagera and Turrbal elders past, present, and emerging.
Michael and Dr C summarized today together, once again. As a community member-physician team,
we have learned a lot from each other. One hears things the other does not. One knows what the
other does not. We used a lot of acronyms today. In the positive lounge, folks talked about HIV
having a wealth of acronyms.
Today, we learned about approaches to cure, including dealing with reservoirs, bnAbs, T
cell vaccines. There were studies of risk of weight gain or diabetes with INSTI’s, Doxy-PEP
again, meningitis vaccine partly effective against gonorrhea (again), lifestyle changes can
decrease risk of heart disease in PWH, Calcium and Vitamin D supplementation during puberty
can improve bone density in children, and increased risk of death in PWH when providers stop
long term opiates in patients with positive urine screens for stimulants. We heard more about
including women in studies, especially cardiac, given cis female with HIV have double the risk
of heart disease compared to cis men with HIV.
We spent time in the “Positive Lounge” and met an Australian chap who is developing an online resources for patients to know about current Australian HIV specific guidelines with ASHM (Australian Society of HIV Medicine
https://ashm.org.au/), especially for patients in rural areas with no HIV specialists. We want to
build a similar resources with Pozabilities and SDHIVC. His plan is to streamline the tool so
that the patient only needs to enter a few criteria, like age, gender and year HIV diagnosed.
Researchers are studying patients who have natural or post treatment control of HIV, i.e.,
suppressed HIV RNA after ARV interruption. Some viral periods are short, weeks, but still,
something to learn. After bnAbs, suppression has occurred for 6 months or more. It surprised us
that 1/3 of patients with natural HIV control reported no satisfactory sex life. We wonder how
the general population reports on sexual life. What percentage of people don't enjoy sex? There
are lots of different shades of this term, but the basic definition is a lack of interest in sex or less
of an interest in sex than others. About one percent of the population identifies this way
according to Asexual Visibility and Education Network
Challenges with HIV reservoirs include qualifying differences between cells that are
replication viable or not in varying reservoirs, especially those that are harder to find and unclear
if infectious. There is variability in patients who can control the virus without medicines. Some
have been controlled for years and then breakthrough and must restart ARVs. In these patients
with no detectable HIV not on medicines, there is increased physical health, fewer symptoms,
more social and intimate relationships, but more health concerns and mental disorders versus
other people with HIV.
Integrase strand inhibitors (INSTI) related changes in BMI and risk of diabetes
There was more on weight gain and diabetes with INSTI’s. One large study of 30,000 PWH
showed little to no difference in diabetes for INSTI compared to non INSTI users. What was
significant is if one started with a high BMI, there is more weight gain after starting ARV’s
despite class of ARVs. The following graph shows incidence of diabetes in INSTI users versus non-
INSTI users. If a patient has a low BMI, there is little chance of new diabetes after INSTI is started. By the
time the X axis line gets to a BMI of 30 or more, the two lines separate, and you see that there is
significant incidence after starting INSTI. This parallels studies showing the risk of weight gain.
In RESPOND, current use of INSTIs vs. non-INSTI was associated with an increased risk of
diabetes which partially attenuated when adjusted for BMI changes and other variables. There
was no difference in DM risk between current TAF and TDF users. In adjusted analyses current
TAF use had similar DM risk to current TDF. There was little evidence of an interaction
between log BMI, INSTI and non-INSTI use.
Vitamin D and calcium intake are associated with bone deficits among adolescents living
with HIV in Zambia and Zimbabwe
Supplemental Vit D and Calcium during puberty led to increased bone density. The study
was in Zambia and Zimbabwe, where we were told that 10% of children with HIV have
osteoporosis compared to 6% in HIV negative children. There were 842 participants, most were
female. 75% had low calcium consumption and 25% had low vit d consumption.
Effects of lifestyle modification and annual screening in the prevention of cardiovascular
risk factors in South African women with HIV
Women with HIV (WHIV) are faced with an added burden of obesity and hypertension,
particularly in under-resourced settings. We sought to assess the effectiveness of regular
screening and lifestyle modification interventions in modifying CVD risk factors in South-
African WHIV. Unfortunately, they did not report what lifestyle or annual assessments were
done. There was no effect on obesity, but there were significant improvements in fasting glucose
and also in cholesterol (HDL increased and LDL decreased). They noted that women are at
higher risk of metabolic syndrome and have double cardiovascular risk compared to men).
Four major themes emerged from the data, namely perceived body image, benefits barriers and
recommendations to improve adherence to WHO-PEN lifestyle modification management. They
also assessed if they believed that HIV associated stigma hindered access to care. They found
that financial limitations and the lack of social support posed barriers to adherence to programme
participation. They were further challenged by poor body image perception. Participants believed
that such interventions offered them hope and feelings of improved well-being. Women
recommended that lifestyle modification interventions such as those studied in the ISCHeMiA
study should include partners and family to improve adherence through social support.
Effects of lifestyle modification and annual screening in the prevention of cardiovascular
risk factors in South African women with HIV
The authors assessed the effectiveness of regular screening and lifestyle modification
interventions in modifying CVD risk factors in South-African WHIV.
Re-evaluating risk: evaluating opioid-related harm associated with stimulant use in people
with chronic pain living with and without HIV Sherika HANLEY, South Africa
This study included 300 PWH and 300 HIV negative.2012 to 2019 in San Francisco.
They assessed whether a stimulant positive urine toxicology screen results were associated with
increased: 1) opioid-related emergency department (ED) visits (oversedation, constipation,
infections associated with injecting opioids, and opioid seeking); and 2) Long term opiate
discontinuation 90 days following a stimulant-positive UDT. There was no association with ED
visit or death within 90 days of a positive urine screen for stimulants in PWH or HIV negative
subjects. However, stimulant use was associated with subsequent discontinuation of long-term
opiates within 90 days. Discontinuation of opiates was more likely among Latinx individuals
and less likely among PWH . The speaker suggested that detection of stimulant use should result
in a discussion of substance use and risk, rather than reflex to discontinue opiates.
Discontinuation of opioids can cause a great deal of harm, even death. As background, the
speaker told us that 1 in 5 PWH were prescribed opioids for chronic pain in 2011. One in 10
used stimulants. Stimulant and opioid use increased during covid, as did deaths. There is a well-
known increased risk of overdose if opioids suddenly suspended.
We also want to note an important study reported yesterday that circumcision in MSM
reduces risk of HIV. Michael will give a summary of the presentations on neurocognition in
HIV, which was the best session we attended, and a topic very important to the current HIV
community.
Finally, the Closing Ceremony did not offer new information. There was discussion
about the goal to end HPV cancers, including cervical, anal and oral, by using screening and
gender-neutral vaccination, i.e., vaccinate everyone—transgender, cis female and cis male. Dr
Anthony Fauci and others talked about how HIV and COVID research cross pollinate each other.
He also highlighted the importance of social determinants of health.
G’day and welcome to our summary of the second day of the IAS Science conference from POZabilities and the San Diego HIV Consortium. Today’s blog is led by Joe Caperna, MD.
All sessions started with respect for first nations. ‘I’d like to begin by acknowledging the Traditional Owners of the land on which we meet today, the (people) of the (nation) and pay my respects to Elders past and present. ‘
Today’s highlights included more on Doxy-PEP, bnAbs1, U=U2, growing incidence of highly resistant gonorrhea, weight gain with INSTI’s, possible hypertension with INSTI’s and our first protest demanding zero transmissions.
We met new and old colleagues. We saw Dr Andrew Zweig from AHF San Diego and will lunch with him tomorrow. We keep running into Jeff Taylor from PS. I’ve run into quite a few UCSD or UCSD alum researchers, like Lucette Cysique (who led the Neurocognitive talks yesterday) and Dr Richard Haubrich, now at Gilead. WHO Director-General’s keynote speech, The honorable Mark Butler, IAS President Professor Sharon Lewin.
More studies were reported on Doxy-PEP (Doxycycline Post Exposure Prophylaxis), which greatly reduces the risk of Chlamydia and some for Syphilis in MSM. Doxy-PEP treatment is 200mg of doxycycline after sex. Doxycycline is used often for acne and malaria and known to be safe. There was one study, however, that showed failure of Doxy PEP in young women in Kenya. Adherence was good, but the concentrations of doxycycline in the female genital tract were not high enough to prevent STI’s. It is still not known if Doxy-PEP will prevent gonorrhea, but researchers are skeptical. One speaker recommended Doxy-PEP not more than 3 times per week, but did not say why. For now, CDC3, California Dept of Health4 and San Francisco Dept of Health5 recommend that it is still best w/in 24 hours but more than every 24 hours, and must be within 72 hours.
bnABS (Broadly Neutralizing Antibodies) involves the use of specially targeted antibodies to block the virus from infecting the cell. Information was presented on bnABs as PrEP and shown to be partly effective but probably will need combinations of several antibodies to cover the many HIV variants. There were results nearing 100% clearance with 3 bnAbs. Also reported, resistant gonorrhea is increasing.
There were 3 studies on weight gain and ARVs. The first two showed no change in weight or blood pressure related to the ARV. The 3rd study showed that weight gain explained the hypertension. The BMI and hypertension risk is not different for what type ARV regimen. The hypertension is probably weight gain that would have occurred without ARV’s ie, from lifestyle, diet and exercise.
One researcher studied weight after INSTI was switched to a PI. There were 103 patients on DTV/FTC/TAF (dolutegravir, emtricitabine, tenofovir alafenamide) were switched to the PI DRV (darunavir). Results at week 24 showed weight gain may not be reversible with this switch. But who would expect weight loss on a PI? The studies were about what happens if drugs are changed. None showed benefit. Nonetheless, weight needs to be managed.
Hypertension was also looked at related to ARV’s, specifically dolutegravir and TAF.
Researchers found increases in blood pressure and weight with DTV/FTC/TAF, then switched dolutegravir to efavirenz. The study was done in Cameroon with over 600 patients, where they must purchase their own medicines. They could not discern if the hypertension was from the medicines or weight gain that might have happened even if never took the ARV’s. We don’t use efavirenz much if at all anymore in the United States.
An audience member asked about Ozempic and other weight loss drugs. A lot of providers are using these new agents. Researchers studied regimens that had both dolutegravir and TAF and did not know if weight gain was from INSTI or TAF.
The plenary session on HIV Elimination through prevention was very useful. It started with the first protest we saw
We endorse freedom of expression as an essential principle in the HIV response). Most medical doctors in Thailand are unaware of U=U. Their message was “to be confident about U=U.” “There is clear science to support no transmission” at HIV RNA <1000. (Lancet 2023) The protestors were dynamic and got audience to participate, and yell “Zero.” They chanted “On your mark, get sex, we are ready to say zero”. The activists got us excited about getting to zero transmissions. Best part of the conference for us so far. Some of the protesters got up to speak. One said they were infected at birth, another married and planning to have children.
Smallpox is the only infection that we have gotten to zero, but smallpox is very different, no reservoir, short infectious period, versus HIV which has many reservoirs and long infectious period. Also, there is no HIV vaccine.
The WHO global target is “ending aids threat by 2030” and decrease the incidence by 90% by 2030, and 95% of at risk populations on combination PrEP.
We want to comment more on yesterday’s presentation of REPREIVE, which showed a large reduction in heart attacks and strokes with a statin called Pitavastatin. REPRIEVE data on CIS females will happen soon. The investigators noted that women with HIV are under-represented in clinical research trials in general. For context, 53% of individuals living with HIV worldwide are women. We know there are sex-based differences influence HIV infection, HIV care, and the development of HIV-associated complications, like heart disease.
The percentage of women in clinical research trials by trial type was: 19%, in antiretroviral therapy trials and 11.1% in trials of HIV CURE.
Women with HIV have a three-fold risk of having a heart attack compared to women without the virus.
The REPRIEVE trial will test how female-specific hormones influence heart disease risk and the effects of heart disease prevention strategies.
It’s the end of day 2 now, and we learned a little more, and were encouraged by the activists. Prevention, heart disease, hypertension, weight gain, bnAbs, women and activism were highlighted. Honestly, nothing earth-shattering. Tomorrow, we will look for the cure. One encouraging researcher commented “we just don’t know. Tomorrow, we might have our Einstein, who sees HIV in a different way.” Michael said “I might find it hidden under the rug tomorrow.”
You can access the program and schedule online: https://programme.ias2023.org/
Thank you for reading, more tomorrow.
Michael Donovan (Pozabilities) and Dr Joe Caperna (SDHIVC)
Footnotes
1 Broadly neutralizing antibodies (bNAbs) are a type of antibody that can recognize and block the entry of a broad range of different strains of HIV into healthy cells.)
2 U=U People cannot pass HIV through sex when they have undetectable levels of HIV. This prevention method is estimated to be 100% effective as long as the person living with HIV takes their medication as prescribed and gets and stays undetectable. This concept known as Undetectable = Untransmittable (U=U).)
3 CDC Doxy-PEP statement on Doxy-PEP, not GL. https://www.cdc.gov/nchhstp/newsroom/2022/Doxy-PEP-clinical-data-presented-at-2022-AIDS-Conference.html
4 California Dept of Health Doxy-PEP GL’s https://www.cdph.ca.gov/Programs/CID/DCDC/CDPH%20Document%20Library/CDPH-Doxy-PEP-Recommendations-for-Prevention-of-STIs.pdf
5 San Francisco Dept of Health Doxy-PEP GL’s https://www.sfcdcp.org/wp-content/uploads/2022/10/Health-Update-Doxycycline-Post-Exposure-Prophylaxis-Reduces-Incidence-of-Sexually-Transmitted-Infections-SFDPH-FINAL-10.20.2022.pdf
A new report in the, published July 22 in The Lancet, found that people with viral loads of HIV below 1,000 copies/mL have almost no risk of transmitting the virus to their sexual partners. Previous studies have not been able to confirm a lack of transmission risk above a much lower number — 200 copies/mL.
More evidence that staying compliant with ART can help PLWA live a more normal life and potentially reduce the stigma of sexual intimacy
Hello from winter in sunny Brisbane, Australia! The International AIDS Society is holding its annual conference here this year with a focus on scientific advances. The days are full and hectic, but lots of interesting developments to share. As the conference progresses and more of the slides and material become available you can expect to see a series of blogs from the members of the San Diego contingent providing both news and perspective on what is being reported. For now, I’ll share a few quick observations on sessions I found particularly interesting.
First up was a fascinating session on the impact of HIV and Aging on mental health and cognition. I’ll provide a dedicated blog on this later, but there is good evidence of the impact of HIV on acceleration of cognitive decline. In good news, our own UCSD researcher, David Moore, provided some results of what I call the “walnut” study that many of our members participated in. The good news is that there is clear evidence that exercise and nutrition can have significant effect on moderating the impact on our lives. Jeff Taylor, from Palm Springs, who many of you may know participated on a panel of community members as part of this discussion.
Yesterday, there was a report from the Pasteur Institute on the Geneva patient, the 6th person to have HIV cleared from their body. The process is not one that would be used for a general cure, as many people who go through the process don’t survive it, it is always good news that HIV can be cleared and a more normal immune system reconstituted. The process involves harvesting immune cells and then using chemo and radiation to completely destroy the existing immune system, to address advanced lymphoma, and then using the harvested cells to regrow a new immune system.
Lots of talk about long acting methods for delivery of HIV medication removing the need to take daily ART pills. From the current injectable approach to implantable medication that slowly dissolves there are a number of new methods for both treatment and PReP for delivery of medication. This can be very effective for those who only take HIV meds or deal with stigma at a personal or cultural level that make carrying HIV medication difficult.
The team who led the REPRIEVE study whose results on the use of stations in PLWH are likely to lead to unexpected changes in the standard of care for HIV, showing a 35% reduction in cardiac events for those taking these drugs. This has certainly been the biggest news in HIV treatment in the past few years. This study involved a number of folks from the San Diego area.
Also hot are talks on the global Getting to Zero efforts to stop the spread of HIV and get those impacted into treatment. Lots of new research on various strategies and studies working towards a cure, whether through clearing HIV from the body, enabling the immune system to keep the virus in check without adding medication pr providing more affordable and effective treatment options. Those of us in attendance will provide more blog reporting on these and more interesting topics over the next days.
More to come!
The UCSD AntiViral Research Center (AVRC) and HIV Neurobehavioral Research Program (HNRP) both have ongoing studies for those folks interested in participating. Many of the life saving treatments and understanding of HIV and it’s effects on the body have been gained through this type of research, so it’s important that PLWA continue to participate in this research as it makes sense in your life. Below are links to the AVRC and HNRP studies currently open and contact info on how to find out more.
Many of our POZabilities event attendees have or do currently participate in research, so feel free to drop by and ask around if you have questions.
US health officials are worried that MonkeyPox (MPOX) could make a return as people gather for pride events this summer. Large numbers of gay men traveling to events where M2M sexual encounters are likely may raise the risk of new transmission. The government is making available additional vaccine doses focused on large pride events. “More shots in arms is how we get the outbreak under control,” Bob Fenton, the White House monkeypox response coordinator, told reporters Thursday. He said the effort is an attempt to “meet people where they are.”
San Diego health department reports that 14, 681 doses of the vaccine have been delivered as of May 1. It is important to remember that this is a 2 dose vaccine, so now is the time to get vaccinated or complete your regiment if you are at risk and have not done so.
What is Monkeypox
According to the CDC, “Monkeypox is a rare disease caused by infection with the monkeypox virus. Monkeypox virus is part of the same family of viruses as the virus that causes smallpox. Monkeypox symptoms are similar to smallpox symptoms, but milder, and monkeypox is rarely fatal. Monkeypox is not related to chickenpox.
Monkeypox was discovered in 1958 when two outbreaks of a pox-like disease occurred in colonies of monkeys kept for research. Despite being named “monkeypox,” the source of the disease remains unknown. However, African rodents and non-human primates (like monkeys) might harbor the virus and infect people.
The first human case of monkeypox was recorded in 1970. Prior to the 2022 outbreak, monkeypox had been reported in people in several central and western African countries. Previously, almost all monkeypox cases in people outside of Africa were linked to international travel to countries where the disease commonly occurs or through imported animals. These cases occurred on multiple continents.”
The CDC web site is: https://www.cdc.gov/poxvirus/monkeypox/index.html
What are the symptoms of Monkeypox?
The CDC states that “People with monkeypox get a rash that may be located on or near the genitals (penis, testicles, labia, and vagina) or anus (butthole) and could be on other areas like the hands, feet, chest, face, or mouth.
Other symptoms of monkeypox can include:
You may experience all or only a few symptoms
How is Monkeypox spread?
Monkeypox is spread most effectively through sustained contact with the blisters or rash, allowing the virus to enter an uninfected person. It can be spread through extended contact with infected clothing or surfaces.
While it can be spread via quick casual contact with fluids, it is most likely to be transmitted through sustained contact rather than brief contact. For example, it is unlikely to be transmitted through a quick brush past someone in a bar, but continually rubbing against someone in a crowded bar over a longer period of time increases the odds or infection.
While Monkeypox is not a classic STD, having sex would normally include sustained skin to skin contact, maing it a very effective mode of transmission. Much of the spread in the gay community is thought to be tied to networks of people having sex with each other.
Here is a chart that illustrates some of the risk levels of various modes of transmission
How can I reduce my risk?
Take the following three steps to prevent getting monkeypox:
What about those with HIV?
Of those people diagnosed with Monkeypox whose HIV status is known, a disproportionately high number (28-51%) are HIV+, mostly with lower CD4 counts. This is of concern and has driven vaccine prioritization to focus on those with weakened immune systems as the availability of vaccine is limited at this time.
It is recommended that HIV+ folks with lower CD4 counts (<200) refrain from risky behaviors until a sufficient dose of vaccine is administered and has reached peak effectiveness.
What do I do if I think I have been exposed or have symptoms?
Call your healthcare provider.
If you do not have one, call the county help line at 211. They can guide you through the proper steps to take. The county can also provide supportive housing during any quarantine period.
Isolate until such time as you are cleared if you have active symptoms. The course of the disease can be up to 4 weeks.
There is treatment available for Monkeypox as this is not a new virus, unlike COVID. Your healthcare provider can make this available if your condition warrants.
Q&A
If you have questions we have not addressed, send an email to michael@pozabilities.org and we will work to get answers.
Q: Where can I find information about vaccine availability in San Diego?
The San Diego Health and Human Services Agency has a website that contains all of the latest information https://www.sandiegocounty.gov/content/sdc/hhsa/programs/phs/community_epidemiology/dc/human-monkeypox/
In addition, they provide resources through the 211 call center.
Q: Can people other than members of the LGBTQ+ community contract Monkeypox?
Yes. This is a virus that is transmitted by physical contact. So far, most of those infected have been gay men having sex with men and has been confined to those networks of people. Anyone who comes in contact with an infected person and experienced prolonged contact with reservoirs of virus can be infected.
The San Diego HIV Community Consortium is presenting a series of forums and presentation on hot topics in HIV. See the flyer for more details!
This is a new webinar series to discuss the needs and concerns around the research towards a cure for HIV specific to people who have lived with HIV for many years.
The series is sponsored by the DARE, RID-HIV, CRISPR for CURE Collaboratories, along with AIDS Action Baltimore, AIDS Treatment Activists Coalition, Elizabeth Taylor 50+ Network, HIV + Aging Research Project-Palm Springs, NMAC, Older Women Embracing Life (OWEL), Positively Aware, SAGE, San Francisco AIDS Foundation, Treatment Action Group, The Reunion Project, and The Well Project.
The series will be held on various Tuesdays from May to November 2023.
Each session will start at 10am Pacific / 1pm Eastern.
You can register in advance for the entire series or for individual sessions here: https://bit.ly/3ZCA4fC
After registering, you will receive a confirmation email containing information about joining each session.
[pdf-embedder url=”https://pozabilities.org/wp-content/uploads/2023/04/LTS-CURE-FLYER-the-20th-FINALversion.pdf” title=”LTS & CURE FLYER the 20th FINALversion”]
Our Mission Statement
POZabilities is a volunteer effort to reduce isolation, depression and stigma among individuals in San Diego who are infected and affected by HIV through education, outreach, and networking.
Our Values
POZabilities envisions an HIV+ community where social support is strong, where isolation, HIV prejudice and discrimination are eliminated, and where HIV+ individuals live healthy and fulfilling lives.
We Aspire To Be
Forward thinking, collaborative, and willing to engage with the community we serve. Instrumental in efforts to build a community that has the information, support, and mentor-ship to lead healthy and fulfilled lives.
A Local Organization
POZabilities directs it efforts to those living in the City and County of San Diego, specifically to:
How you can help!
YOUR DONATION WILL HELP US CONTINUE
• working hard for HIV/AIDS Long -term survivors.
• making forums, workshops, and social support available to all those affected by HIV/AIDS.
• maintaining a strong organization.
DONATE TO ONE OF OUR DEDICATED TEAM MEMBERS.
1, 2, 3 AND YOU’RE DONE!
1. Click “Members” 2. Select a team member 3. Make a secure donation
Remember, our grant is based only on donations to team members
IT’S EASY TO BE PART OF OUR TEAM
Click “Join Our Team
THANK YOU FOR YOUR DONATION!
Article on monkeypox in the LGBTQ+ community in San Diego, by POZabilities board director Allan Acevedo
https://lgbtqsd.news/understanding-monkeypox-education-prevention-and-harm-reduction-are-key/
Here is a link to the latest information from the Centers for Disease Control (CDC) concerning monkeypox. It includes a link to clinical information about MPX and HIV co-infection.
Concerned about monkeypox? Learn more about how to protect yourself and your loved ones from monkeypox, and get to know more about the County’s response to the local health emergency at a Virtual Monkeypox Townhall on Thursday, August 11 from 6:00p.m. to 7:30 p.m.
The replay of the town hall is available at This link
An opinion piece by our Managing Director, Jerry Turner. https://www.sandiegouniontribune.com/opinion/commentary/story/2022-08-10/monkeypox-san-diego
June 2021 marks 40 years of the HIV/AIDS epidemic. For the occasion, Vice Studios filmed a two-hour documentary titled Vice Versa: The Neglected Pandemic, 40 Years of HIV & AIDS. The special premieres Wednesday, June 2, and is narrated by Queer Eye star and author Jonathan Van Ness, according to an exclusive in The Hollywood Reporter. [POZ article]
http://https://www.poz.com/article/tv-special-explore-like-living-hiv-today
This is the first of our POZ Stories series, which highlights the people and organizations that are making a difference to the POZ community in San Diego. Jerry Turner is the Managing Director of the POZabilities organization and he talks about the group, its activities and future. He also shares stories about his life and history as a POZ activist.
On February 26th, the NIH updated recommendations for folks with HIV regarding COVID vaccines.
Click here for info!
POZabilities is sponsoring a discussion with Sen Laird who has introduced legislation (SB 258) to add Personas with HIV/AIDS to the class of individuals who are eligible for enhanced services from the California department of Aging. Join us for the zoom session at 5:#0 on March 2, 2021.
https://us02web.zoom.us/j/86372022642?pwd=a3MwQVc0U0p2aytQWkZEQjlaazZXQT09
Meeting ID: 863 7202 2642
Passcode: 504292
If you are a resident of San Diego county and receiving services funded through the Ryan White Care Act, consider attending the HIV Planning group consumer committee. The planning group, within the County Health department, sets priorities and discusses how these funds are spent. Make your voice heard.
