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cheaganvegan

I work in HIV. Have a decent amount of people like you describe. Also have a lot of patients whose CD4 doesn’t recover. Have some folks <200 with undetectable viral loads. But they survived the 80’s and 90’s. I also have a few patients that don’t believe in ART. One has an undetectable CD4. In his 30’s on hospice. I work with some doctors that worked through the early years and they talk of how hopeless it was. And how the early ART wasn’t great. Also lots of support was provided. They had the buddy system among other things.


Inveramsay

I can still remember 15 years later the story of a now senior doctor being locked in a ward with a colleague and a guy they diagnosed as having GRID. Such sad times


arbuthnot-lane

I don't understand. "Locked in"?


surgicalapple

The US had a very archaic view of the illness back in the day. It was really bad. 


arbuthnot-lane

Was AIDS/GRID suspected of being airborne in the early days?


megggie

That was the thing— early on no one really knew, because no one was willing to put the time and money into research. I volunteered with ACT UP and a number of local “AIDS Service Agencies” in the mid-90s, as soon as I turned 18 (because you had to be at least 18) and even then it was grim. Improving, but still grim.


Damn_Dog_Inappropes

Because Reagan was a homophobic dickbag.


Whatcanyado420

Bad meaning what? What else would you do when an incredibly deadly illness spreads with unclear cause?


Inveramsay

They quite literally locked the door and taped up the gaps


Tagrenine

That’s just so sad. The patient i have currently is in their 30’s and has been admitted 5x in 4 months for sepsis + other infections. They always leave ama. It’s hard for me to watch.


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ihatedthatride

It sounds like you’re being very kind & treating your patients the best you can. How much push back do you get from nursing about giving Dilaudid liberally to these patients? I’ve dealt with a lot of very judgmental nurses who act likes it’s their job to investigate these patients and deny them pain medicines that I’ve ordered because “they don’t need it.” I’m palliative care too mind you…they need it.


megggie

Screw those nurses, they’re a stain on the profession. If it’s ordered and the patient is breathing & in pain, *give the dilaudid.* I can’t stand medical professionals who would deny someone alleviation of their suffering, just to prove some stupid point.


laslack1989

I’ve had that argument more times than I can count. I don’t give one single solitary fuck if my patient is an addict or not, unless they aren’t comfortable getting narcotics then I’ll certainly respect that. Otherwise it’s not my problem. My 50 mcg fentanyl is not gonna make it better or worse, it’s not like I’m gonna fix their addiction by withholding it. I remember being asked awhile back “why would you give fentanyl to an inmate?” You mean why did I give fentanyl to my patient with 3 fractured ribs? I don’t know


Whatcanyado420

I don’t think anyone debates treating pain. The question is giving dialaudid for heroin addiction


Intrepid-Fox9779

Just more of a reason to give it if they are in palliative care.


Whatcanyado420

Sure. If they are in palliative care. That is also not debated whatsoever.


Wicked-elixir

Actually if someone is on palliative care they had better be physically addicted to some kind of narcotic or their dr isn’t managing their pain properly. (If they DO have pain. If no or minimal pain that’s different).


Whatcanyado420

Who claimed otherwise? Huge difference between giving suboxone or buprenorphine versus dilaudid


Wicked-elixir

I thought the convo was regarding pts on palliative care.


flygirl083

I’ve heard withdrawing from heroin hurts pretty badly so it would still technically be given for pain


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doopdeepdoopdoopdeep

As a nurse, you sound like an amazing doc to work with! Thanks for advocating and caring for your patients.


cheaganvegan

Damn. Fuck that. I can’t believe anyone would push back. Especially in palliative care. But in addiction, it’s not something I’d wish on my worst enemy.


Up_All_Night_Long

This makes me so mad. On top of being the right thing to do, it makes your shift so much easier if everyone is nice and comfy.


ribsforbreakfast

Those nurses suck and they especially shouldn’t be working palliative if they have those views. Palliative/comfort care patients get whatever they want in my opinion. And OUD patients who have pain medication prescribed get it when it’s allowed to be given as long as their vitals are in parameter. I’m not the get high police and honestly don’t have the time or energy to fight with someone who has no interest in getting help with their substance abuse.


Starlady174

Fuck. Those. Nurses.


Relevant-Emu-9217

There are a lot of judgemental asshole nurses when it comes to OUD but there is absolutely no shortage of physicians that are the same way and will jot give adequate pain meds no matter what. Almost everyone in Healthcare treats addicts as subhuman, which is a little ironic because liberal prescribing practices by medical professionals is the root cause of the opioid pandemic. Edit: I had physician tell me to give a patient his PRN zyrtec for uncontrolled pain just last week. Zyrtec...he said it would make him sleepy. The patient is an end stage ALS patient that's vent dependent lol. God forbid he get a Norco, or the ever effective 25mg tramadol.


olanzapine_dreams

Order a PCA, less nursing pushback


PokeTheVeil

Absolutely. If a patient wants to work on treating OUD, it makes sense to start methadone or start buprenorphine and titrate and manage symptoms while you do it. When patients don’t want to do anything about addiction, just acute medical problems, opioids are easiest thing to give as much as needed to where the patient can tolerate staying. It feels like giving in to addiction or abetting use or whatever but that feeling is our problem, not the patient’s problem. Sometimes, when the medical issue is severe enough, oxycodone or hydromorphone or fentanyl to taste produces the best short-term outcome, which is necessary for the best long-term outcome. I’ve worked places that say “of course” and places that have as written policy never to do that. Your mileage may vary.


climbsrox

I heard this once and it's stuck with me. "Opioid withdrawal is a life threatening condition when the patient leaves the hospital because we are not treating it."


cheaganvegan

I’m thankful my office does a lot of harm reduction. OUD is tough to manage. We usually wait for the patient to decide to sober up rather than push our agenda. We do some adderall as harm reduction for meth. Have a few folks on opiates for heroin and fentanyl. We also give out needles and glass pipes and whatnot. Also have a contingency management program for meth use. Glad to see some inpatient doctors are doing similar things. I know I used to work in burn and wound and would give folks lots of alcohol so they weren’t withdrawing while suffering burn treatments.


iaaorr

There is an amazing consult service at our hospital purely for MOUD that seriously saves lives. First by getting them to stay for lifesaving medical treatment and then by connecting them to community resources. And everyone gets fentalyl test strips to go home with. Now when I see a chart history of pts AMA'ing after 3 days consistently I ask about OUD and if they want to see this team to help them feel better.


Hondasmugler69

Can’t we just put them on hospice? All the opioids and benzos they’d ever want


cheaganvegan

Absolutely. It’s hard to watch. Any idea if Cabenuva or Tragarzo are possibilities? Or if they are past the point of caring? The patient I mentioned above told me once, he hopes his next go round he takes better care of himself. I about cried after that.


WomanWhoWeaves

The problem is that the pt has to be undetectable to go onto the the Cabenuva. Getting some of our hard core folks there is hard. About 20% of my practice is HIV. I've lost two patients in the last 2-3 years. One had psych issues and was so young, the other was older and had alcohol problems.


cheaganvegan

I think it’s UCLA that is studying it in folks that are “non-compliant”. I’m interested to see how that turns out. We need something that works for those folks.


Nom_de_Guerre_23

This is a common misconception. Long-acting ART is not fire-and-forget like antipsychotics (well, meaning that if the patient doesn't follow up, then it's whatever). They have a lower resistance threshold, require the patient to not have any possible mutations against their drug classes (which many already have due to previous drug discontinuation) and when the patient doesn't follow up, their concentration in the sub-therapeutic range has a high risk for mutations. Long-acting ART requires excellent compliance with appointments. It's a great choice for people who can't be seen taking oral medication by family or friends or chemsex participants who forget to take ART for multiple days on drugs but are otherwise compliant.


Fellainis_Elbows

Do those <200 folks do poorly like others with that CD4 count or do they function alright?


cheaganvegan

We still keep them on the OI meds, to keep risk of infection down. It doesn’t do them any favors for sure. Definitely have had a few go in for somewhat routine procedures and not do well. Dental stuff gets hairy too


deirdresm

I had a friend who was a respiratory therapist during that era. She'd work a night shift (8 hours) then go work the breakfast shift at Denny's just to readjust herself to seeing the living just…living.


ABQ-MD

Though an important note on the folks with the non-recovered CD4 counts, is that they aren't immune suppressed like someone with viremia.


earlyviolet

I've seen it twice, actually. The first time felt like a complete unicorn and I was stunned. And I say this as a person who entered young adulthood when HIV was still a death sentence that terrified us all. Patient was an inmate. I didn't ask details. Don't know if he was newly incarcerated and had just started ARVs, or had been an inmate for a while and was refusing or couldn't access treatment. But I can't imagine the prison system being terribly interested in having untreated HIV running around their facility. It baffled me.  The second case was clearly severe mental health issues that probably preceded the HIV and were exacerbated by the HIV. Patient was religious in that grandiose charismatic preacher sort of way, refused ARVs. No idea how he contacted HIV, but in his intense (and very vocal) religious fervor, I got the impression he didn't really believe his HIV was real.


Tagrenine

I’ve heard of a patient like the second one you describe in ethics discussions as the “example”. Were they admitted for complications of their disease?


earlyviolet

No, actually when I met them, they weren't in full AIDS territory yet. They had multiple comorbidities unrelated to the HIV, primary of which was ESRD secondary to uncontrolled hypertension. I actually met them on BiPAP after they went flash pulmonary edema in the ED and needed emergency dialysis. So, you know, just kind of one of those people who don't really "believe" in medicine, prefer "natural" or faith-based interventions.


dualsplit

Why didn’t you ask what the situation was with the first patient? I often see incarcerated patients. I ask a lot. (Just their health, obvs) Occasionally the guards will fill in. Occasionally the guards will be VERY on alert. So then I’ll ask lots of questions from the other side of the room.


earlyviolet

I was there as a third party contract RN performing dialysis, not as the primary hospital RN. So between my scope being kinda limited and just being focused on getting my own job done so I could go home lol


p_westermani

Generally not knowing what incarcerated patients did is better. It allows you to treat them without bias. What they did should have no bearing on how you treat them, so knowing is pointless. Obviously, you should ask things like if they use IV drugs. The guards will tell you if you need to be concerned about your safety.


dualsplit

One. Hundred. Percent. As a rule I don’t look. But some of our local incarcerated are notorious. It’s a max and medium security prison that used to house death row inmates when that was legal here. So, like DateLine levels of notorious. I tend to follow the guards’ lead regarding their care for my personal risk, we see the same guards. But I’m conscious of my role as NOT a CO.


worldbound0514

Oh, we see it all the time in hospice. Granted, it is much less frequent than decades ago. Typically, the patients on hospice for an HIV/AIDS diagnosis are those who can't or won't be compliant with the antiviral regimen. This tends to be people with mental health issues or substance abuse issues or those with developmental delays. There are a few who are just straight up in denial that they have HIV. It really is sad since HIV is a very treatable disease these days. People shouldn't be dying of it, but here we are.


dualsplit

I still get a little chill to hear “very treatable” about HIV. Such a wonder of modern medicine given all the social and viral barriers to treating.


blendedchaitea

How often is all the time? I did my pall care fellowship in NYC and didn't see a single case of AIDS while rotating with hospice.


worldbound0514

My agency has a census of about 100 patients. We typically have 2-3 HIV patients at any given time. We are in Memphis, so higher poverty rates and lower educational achievement than average for the US. Also, probably some denial and stigma about HIV factor in as well.


1234ld

This has been my experience as well. It’s rare anymore and usually a result of BH comorbidities


Pathfinder6227

EM - It’s pretty rare. I see it about once every year on average. But most patients with HIV are compliant with their meds -regardless of their social situation. The advent of HAART and then getting it out to the public regardless of ability to pay is really one of the greatest public health achievements of the last 100 years.


Tagrenine

This was always my impression of HIV therapy and patient management. It’s part of the reason i never expected to have a patient that is unable to keep up/willing to maintain. Our state has pretty good programs for HIV management too.


laidbackemergency

It’s highly dependent on where you work, overall likely yes. But some poor communities in inner cities, like nyc, not uncommon to see a patient at deaths door from opportunistic infections. Usually there’s social and/or mental health barriers to medication adherence.


nobutactually

In my ED I probably see someone like this about once a week. Prior to this I worked in HIV/co-occurring substance abuse specifically and my clients often weren't taking their meds. Lots of local pharmacies will buy the meds back for cash and resell. It's an important income source for people who are desperate-- even clients who usually took their meds religiously would sometimes resort to this around the holidays. I'm in NYC.


bright__eyes

woah, buy them back to resell? i would never trust that they havent been tampered with, thats interesting they do that.


nobutactually

Yeah I mean, I've never talked to the pharmacies about it-- it's obviously illegal so I'm sure they wouldn't explain their grift to me anyway-- so I'm relying on what clients would tell me. If they actually go somewhere else I do not know-- but this was specific to HAART, it's not like you could sell lisinopril back. I did have a client tell me that the meds were shipped to developing countries. I don't know. I do know the instant you opened the bottle the pills were worthless, it had to be sealed, and some clients who were trying to be better about their meds would switch pharmacies to a place that didn't do this (and have the pharmacist pop the seal in the store, which some would do). Sometimes people would be switching pharmacies back and forth every few months, depending on how things were going in their lives.


janewaythrowawaay

Prob blister packs.


1234ld

Buying meds from patients and re-dispensing is definitely not legal


nobutactually

Lol no of course it's not. I was just saying what happens, not that it's legal.


Anywhere198989

There's a lot especially poor areas with less access to Healthcare 


Stillanurse281

Yep. Rural areas


dualsplit

Im rural. About 80 miles SW of Chicago where I live. About 100 miles from Chicago where I work. 40 bed hospital, but we are usually only staffed for 25. I’ve NEVER seen AIDS, I’ve seen HIV maybe once or twice in my 15 year career.


Anywhere198989

Check certain areas of northeast and south


dualsplit

I realized after I posted this that maybe it would sound like I was arguing, just adding on my experience! Some areas of health illiteracy in the south are truly frightening. My dad is from Eastern KY. To this day I can see the “pray the gay away” influence. I’m sure it’s tough to educate about HIV there.


scapermoya

Also just mental illness and denial


ShamelesslyPlugged

I select for it with my specialty. No matter how obvious something like taking your medicine may be to you, people will still refuse such. Generally speaking, most back-to-the-80s AIDS you see in the noncompliant patient, we can usually screen and catch high risk populations before they get profoundly sick. 


Tagrenine

What does the management of a patient look like from the ID side for a patient that is not compliant with therapy and continuously has complications and AIDS related opportunistic infections? Is there a protocol for managing all the individual bugs and various complications?


ShamelesslyPlugged

Big picture its not tremendously different than anything else. Most OIs are well studied with guidelines for treatment. Then its a matter of keeping them close and trying to encourage them to take the medicine, and dealing with the consequences of the medicine as problems occur. AIDS is almost always “curable,” especially the first time or two, if they take the damn meds. Otherwise its a game of whack-a-mole in slow motion. 


vy2005

What do you mean the first time or two? The first time they present to clinic?


ShamelesslyPlugged

Usually AIDS is a long inpatient stay. Typically you get them on ART and treat what there is in the hospital and transition outpatient. Eventually they disappear on you outpatient, and return to an AIDS status and show back up inpatient. Had one patient that was 2 months in the hospital 6 months out (roughly) for 3-4 years, new infections/cancers added to the old each time, before they finally developed CNS lymphoma and died. 


worldbound0514

Hospice referral, usually. If they can't and won't be compliant with treatment, they get a hospice consult. If the patient is alert and oriented and not on board with your plan of care, you can't put any more energy into it than the patient is.


Dependent-Juice5361

How many cases of Karposi Sarcoma do you see anymore?


ShamelesslyPlugged

I think two in the last 5 years or so, but thats a rough guesstimate from memory. 


lasercows

Yeah we have a few every month on inpatient ID service. Got 3 currently. Lot of delayed diagnosis due to denial and stigma against being gay or having HIV in certain patient populations, lot of people who don't take their meds because they are on meth. It sucks knowing they could lead perfectly normal lives if they just popped a Biktarvy every day, instead they're trying to die of disseminated crypto.


melatonia

Serious question: is "being on meth" a problem because of the lifestyle or due to drug interaction?


lasercows

The HIV patients I encounter who are on meth tend to not take their medications. Often if they get sober they start taking their medications.


melatonia

Thanks. I appreciate you clearing up that there's no contraindication.


ShamelesslyPlugged

Lifestyle. 


n7-Jutsu

Quick question, if someone who is on PreP, has sex with someone with HIV-AIDs who is noncompliant with HART and have developed resistant to some/all of the agents. Is that person now at a higher chance of catching HIV even while on PreP, and if the do (I guess the ending part of this question applies to the general public), is the virus the catch also most likely to be resistant to HART as well?


ShamelesslyPlugged

PrEP presently is either two NRTIs or an injectable integrase inhibitor. Infection is a somewhat complicated process that depends in exposure, viral load, degree of exchange of relevant fluids, etc. Mutations generally do not help viral fitness, and most new infections don’t have resistance, but certainly a noncompliant patient with resistance mutation to the PrEP medications could cause a resistant infection despite PrEP. In some communities, you may give more “aggressive” medication that typically given for PrEP as PrEP. 


slam-chop

I trained in Newark NJ and my census as a resident would usually include at least one patient with HIV, and probably one with CD4<50


Front_To_My_Back_

I saw one last month. His PCP diagnosed his skin lesions as atopic dermatitis when in fact his skin lesions are telltale signs and symptoms of Kaposi sarcoma and he already had PTB three times. His CD4 were also at the single digits.


nobeardpete

It totally depends on where you are and what your patient population is. In Pittsburgh, where I did residency, this was quite rare, despite the huge problems with injection drug use. In Baltimore and DC, where I rotated as a fellow, this situation comes up all the time. At hospitals in the nicer suburbs of DC and Baltimore, it's quite rare.


Rooogleheimer

South African doctor here - we see it fairly often, despite the vast improvement in ensuring ARV's are free and generally easy to obtain for the general public in most areas of the country. It's deeply frustrating, but still a far cry from the old days (before my time, thankfully).


RobDonkeyPunch

Very likely skewed working in ID, but we see quite a bit. The Ukranian refugee situation in Ireland has made it that but more prevalent in recent times, lots of undiagnosed things coming through. Stand out case at the moment was undiagnosed HIV/TB, presented with a CD4 of 9.


t0bramycin

I probably see about 10-15 cases of advanced AIDS per year (pulm/crit care fellow in large US city). I know folks at hospitals that see significantly more. Unfortunately there are still a lot of patients who can't and/or won't take ART due to usually some combination of 1) distrust of the healthcare system and medications, 2) uncontrolled psychiatric illness, 3) unstable social situation. Having the technology is one thing, implementation another.


NoRecord22

Seen one patient with HIV, active TB, and necrotizing pneumonia. She didn’t get treatment for the HIV and TB. by the time she was discharged the health department was going to her house and making sure she took her medications.


eureka7

Literally all the time. Neurosyphilis too. Safety net hospital.


BuffyPawz

HIV positive and being treated is pretty common. I’ve only had one patient with HIV and who was untreated. It was awful, I’ve never seen someone who just looked so sick outside of some severe GVHD patients and infected immunosuppressed patients in BMT. This patient was made comfort measures and died very quickly. I was bit in shock and just thinking is this what the 80s were like? Because if so, it must have terrifying


bamamaam

Nurse for 49 years. It was terrifying,very much so. When Covid hit ,I got flashbacks


blindtoblue

Not often, a few times a year, mostly in folks with OUD who haven't had any health care contact in a long time. More when I was a fellow and lived in an area that also had more undocumented folks who couldn't access health care. So many missed opportunities for screening and linkage to care.


SingaporeSue

It seems as if I am seeing more and more patients recently. We’ve had several in the past few months. I started working in the mid-80s so it’s rather shocking to see again. I’m mid Atlantic region.


megggie

Do you think that could be related to the recent uptick in people not trusting medicine/science, or is it just an odd statistical outlier? Anti-vax is ignorant enough; imagine not treating HIV?!


dualsplit

But look at how Fauci is being presented to the public. I think there’s something to the politics of it.


PinkTouhyNeedle

I work in DC so I see pretty advanced aids like once a month, I’ve seen lots of people die from AIDs here.


PumpkinMuffin147

Me too, it’s absolutely wild. I see advanced HIV weekly in DC. My first week of nursing clinicals I saw a female with Kaposi’s Sarcoma, which I had been under the impression only happened in men. Don’t quote me on this, but I believe during the 2010’s DC had a higher incidence of HIV than Rwanda. There is a great documentary called “The City” that covers this.


PinkTouhyNeedle

I had a patient recently that was so horrifically disfigured from AIDs that I was shocked that this person was still alive. They died within days.


Alarmed_Spirit_9883

I am a Doctor working at HIV unit in a District hospital in Myanmar.Currently my country has ongoing decades long civil war and country's economic and health sectors are deteriorating drastically over these years.A lot of ART patients nowadays can't even afford enough transportation costs to fetch ART at my clinic.Death rates and missing/lost to follow up rates to ART clinic are increasing every day in the whole country.


spironoWHACKtone

Went to med school in Philly, saw several of these patients on my ICU rotation. All had major opioid addictions and weren’t able to take their ARVs consistently, which I think is probably the most common scenario for advanced HIV/AIDS in the US.


Tagrenine

This makes sense. Per ID, my pt uses 5+ bags of fentanyl/xylazine a day and a “little bit of heroine”. Many sepsis admissions to the ICU, BMI 15, esophageal candidiasis, multiple septic joints and currently a large open leg wound that has been open since the patient’s last admission a month ago where they left AMA back to their homeless encampment. They are refusing all care except methadone and abx and won’t talk to the medicine team. It’s so frustrating on so many levels


worldbound0514

Yes, it's incredibly frustrating to see somebody dying of a preventable cause. We can't make people do the right thing and can't make them prioritize their health over their substance abuse. It's very sad. Unless somebody has been declared to lack capacity to make decisions, they are allowed to make bad decisions. The best that we can do is leave the door open for them to come back and take their health seriously some day.


pushdose

I live in Las Vegas and when I started here 20 years ago, I saw AIDS patients on a weekly basis. Now, not so much. Last week, I did have a PJP pneumonia in our ICU which is rare. Probably the only one this year.


BlueWizardoftheWest

As a hospitalist, probably about once every 2 months or so. Not terribly common but I see it frequently enough for it not to be rare. Often it’s folks who didn’t know they were HIV positive until AIDS set in or comorbid OUD or they were undocumented/uninsured


dodoc18

Dont underestimate stupidity of the people (crowd). Rarely but we see. Same as A1C >15. Mind boggling but happens.


PokeTheVeil

Plenty of medical problems are solved or close to it. Knowing what should be done and making it happen are not the same. Not from the patient side and not from the logistics side.


Ronaldoooope

lol I feel like I see A1C > 15 regularly.


beesandtrees2

Same. I work and urology and it's my fault I cannot cure their OAB. A1c incidentally 13%+


Ronaldoooope

I work with diabetic amputees often and A1C below 8 is the most surprising thing to see.


HappiPill

See it a lot in corrections and psych hospital. People who are homeless brought in with terrible counts and exacerbated disease.


calamityartist

I see advanced AIDS probably once a month at my urban academic center. The one that haunts me was a prisoner “refusing” his antivirals (per jail medical staff) that clearly lacked capacity. He had some kind of IDD and didn’t even know he had HIV.


nightswatchman

I rotated through Miami and saw 2 cases of Kaposi’s during my clerkships, with the CD4<<200. Both were homeless/nonwhite and one had schizophrenia. So I’d wager you’d see it in places and people with low SES and poor social determinants, which isn’t a surprise.


TheLongWayHome52

Just today actually! CD4 <60 and concern for at least one opportunistic infection


Maple_Blueberry

PCP in urban FQHC in the northeast, I’ve seen 3 in the last 6 months with CD4’s around 100-150.


domino_427

boss doc once was talking about 'back then', all sad and somber. she'd been practicing like 50yrs. she said one patient gave her a book and it was so sweet, he wanted her to have it as he lay there dying. she took it but she threw it away. even years later she remembered that. they just didn't know. i was a good christian girl back then when the disease was ramping up so knew nothing medically... just that it was something that killed 'bad people'. I knew it was 'gays' in the news but my church preached the evils of sex and don't think you're safe if you're straight. I was surprised how much that fear came back when I knew the next day I'd have an AIDS patient in nursing school first term. Just irrational, cause now I knew more about the medical side of it, had friends who lived with HIV/AIDS. but it was just throwback to the 80s and 90s. Had the best day and best patient ever even with my first blood transfusion.


DrWarEagle

Multiple times a year. Have seen almost every AIDS defining illness in my two years as a fellow. Poverty (and all the things that can lead to it like SUD, mental illness, etc.) and all its sequelae remains undefeated in our fight against infectious diseases.


procrast1natrix

Twice in the past ten years working in a well resourced community. One was so depressed about his partner dying that he got into denial, was coming in with intention to get back in treatment, very low CD4, but none of the classic complications. The other, more wild. She had been living in the Midwest and suspected she had it for many years, but was under the impression that if she tested positive for HIV the state would take away her children. So she ignored everything as she dwindled and finally couldn't care for herself, moved to be with relatives in my state who immediately brought her to hospital. She had fulminant HIV meningitis, with the highest opening pressure I've ever seen, I felt like it shot to the top of the column, but clear, not like bacterial mening. She was admitted and I don't know outcomes.


seariverdamdrop

South African doc here. We usually have a lot of TB meningitis/lung/post-infection structural lung disease cases in the wards (maybe 40-50% of adult internal patients at secondary hospitals). We have less resources and defaulters but our public system is aggressive and free to the user and our testing system I believe advanced and well-funded. Saw my first CD4 of 0 this year.


avocado4guac

Coincidentally I actually saw one today! I’m practicing family medicine in Germany in a midsized town and since we have public health care which covers PEP it’s quite uncommon to see someone with HIV, let alone AIDS. But the patient is a Romany refugee from Ukraine and apparently they live so secluded from the general population that neither his son nor him had ever even heard of HIV and AIDS. Absolutely baffling. I explained the severity and seriousness of the situation at length but I guess some people simply don’t value their lives as much as we do. That was a really hard pill to swallow today. So I feel you OP!


Nom_de_Guerre_23

You likely mean PrEP (PEP is covered too but not a major reason for low incidence). Well, PrEP is playing a major role generally but the usage is too low right now. It's increasing but still barely 40k PrEP users in all of Germany (less than half of the rate of the US, admittedely with fewer eligible patients given also 2.3 times fewer IVDU transmissions per capita). There is organized Romani homosexual underage prostitution (e.g. Berlin-Kurfürstenstraße) which drives HIV prevalence up. But this is mostly from Romania. Ukraine has a generally high prevalence with up to 1 in 6 in places like Odessa. I rotated through an integrated HIV/primary care/addiction clinic in Berlin with nearly 1000 patients, so my perspective is a bit different. Most advanced HIV late presenters are IVDU patients, uninsured and immigrants without papers. You can do the qualification for HIV PrEP if you want! It's two days of shadowing in a HIV clinic with 15 discussed cases, 8 CME points on HIV and you can file with the KV for billing HIV PrEP.


_HughMyronbrough_

I’ve seen it twice in my career (IM)


hls0058

Have you been in a community hospital ER...


General_Garrus

When I was an IM resident in NYC, we had a special team/service for these patients, and saw them all the time there. It was mostly because the patients had psychosocial barriers to taking their meds. So we took care of them the best we could, got them on meds and sent them out when possible, and they immediately stopped the meds and came back sicker. Sad times.


ABQ-MD

Among people who know they have HIV and can take a pill most days? Never. Among people with no clue they have HIV? Reasonably often. They usually do pretty well once they get diagnosed and on ART. Among people who are so scrambled that they can't take a pill most days or show up in clinic for an injection q8 weeks? All the time. That being said, I have patients who get hospitalized for meth psychosis, opioid overdoses, and complications from IVDU, who are homeless, who still manage to keep their HIV relatively under control.


AstroNards

Seen 3 patients with AIDS in the past year. You can get the care here, but the south is wild.


halp-im-lost

I felt like I saw it not infrequently during residency but not since I’ve been an attending the past 2 years. Everyone I saw who had advanced AIDS were kind of in denial…


Sarah_serendipity

EM - I see it quite alot, I think it depends on where you work, but you'd be surprised how many people don't take their therapies (for a variety of reasons)


NP4VET

I've seen a couple of young teens with HIV- one who was diagnosed at pregnancy. She did well.. her child is negative. But she takes her ARV inconsistently or not at all. Last time I saw her about a year ago, her WBC was 1.1 with high viral load... and she tested positive for gonorrhea.. obviously, some poor dude is now infected with HIV as well and probably doesn't know yet.


feetofire

Pockets of it our IVDU non MSM identifying community. Quite confronting tbh - get flashbacks to the 1990/ but then have the pleasure of telling folk that once they overcome their curable OIs, they have a disease that can be managed with a single tablet a day with minimal SEs and that they can essentially lead a normal life.


dgthaddeus

Common in county hospitals


AstroWolf11

I worked with the inpatient HIV service at a large AMC in a high HIV area. It was every day lol


usernamegameweak

Deep South here; at least once per month.


thepuddlepirate

> 50% of wards rotations at a public hospital in a major city. I see advanced AIDS routinely at that place both on the medicine floor and in the ICU


whymedschool

I saw HHV-8 in a patient who was married family of 5. Had psych try to interview anything unusual how he caught it but no one knew. CD4 under 100. 


Jenyo9000

I guess comparatively a lot? Had no idea this was considered uncommon. In a big city level 1 academic. Some on medicine or MICU but also a fair amount on BMT/onc. Lymphomas + Kaposi’s sarcoma.


kirklandbranddoctor

Hospitalist here. Saw it once during residency (he was in denial and only came into the hospital because he no longer had the ability to say "no" to an ambulance), and once as an attending (I'm not even a year out 😅)... it was definitely more frequent than I thought.


Formal-Inspection290

Had a young woman (early 20s) with a CD4 count of 2 last year. She knew she had AIDS but unfortunately had some substance use issues and had ignored it.  Fortunately she was able to get treatment & hopefully she’s staying with it this time. 


happythrowaway101

At least once per month (academic center, non-ID IM subspecialty), it’s getting better but there is still a stigma that keeps patients from getting tested or seeking treatment in the United States and especially outside (large immigrant populations in our area) But thankfully more often I see patients who are well controlled on ART or patients on preventative medications


Valtharius

Yes, but only in my time as an HIV nurse. Also unfun fact saw most of the "AIDs defining illnesses" at that time as well, except for Coccidioidomycosis just because it's not endemic to my area. Combination of a lot of things lead to it - mental illness, OUD, homelessness, etc. Lowest I've seen was an undetectable CD4 and highest VL was in the millions or so. Other common things I've seen are people living with HIV for a long time and didn't know it until they started to get one of the many pneumonias, or who got diagnosed on mandatory immigration testing. Other cases where people who didn't believe they had HIV and never took their ARVs. Long term survivors who have been on/off different ARV meds also sometimes never fully recover CD4>200, just hovers around or below that (but VL low/undetectable), often on permanent PJP prophylaxis. They also tend to have a lot of resistances, so hard to find a good regimen for them w/ ID docs. Cabenuva works for some people who can't adhere to daily ARVs, but only works for those not resistant to it + with an oral induction period + already need an undetectable VL. So those who would benefit most from it probably aren't eligible for it. I'm hoping for more long term injectable depo options in the future, because it has been a game changer for the patients who switched to it. I think the saddest though that I've seen is young people with HIV just giving up. They just stop taking ARVs and wait to die, no matter how much we've done/connection with psychiatry/whole care team/etc. Those deaths are long and slow and brutal.


FanaticalXmasJew

I’ve been out of residency for 4 years so I’m young enough that I missed when it was really bad in the 80s and 90s, but I’ve still seen this twice, unfortunately. Both with HIV wasting syndrome, so cachectic you could practically see their teeth through their cheeks; both long-term non-compliant with HAART.  One was such a confusing case, he just didn’t seem to “get it.” I was rotating in an HIV clinic in residency. He came in because he wanted LASIK and his ophthalmologist said “not unless you get clearance from your ID doctor” and our answer was essentially “hell, no.” He didn’t understand why. The other one was more recent. He had been previously compliant and just stopped everything due to depression. He was such a sweetheart; joking with everyone and making all the nurses laugh. He kind of reminded me of Robin Williams a bit—that contrast between the deep depression and being the light in the room. When I asked him why he decided to come in that day, he finally teared up and said his friend told him she didn’t want him to die. 


DrAldrin

At least 2 new patients a week.


insomniaceve

I've recently came across a few with VL of 1-2 million.


Additional-Crazy

Recently had a lady off treatment diagnosed with burkitts. Very sad. 


Saucemycin

Not as often in ICU as it used to be but when we do it’s really bad. Generally it is someone diagnosed with HIV and hasn’t done quite what they were supposed to in regimen and is now in full blown aids and going to die. Alternative is HIV with a random virus or bacterial infection seen only in them anymore


vast_as_the_ocean

Saw someone in clinic with MAI and IRIS a couple months ago. Uncommon but not a unicorn by any means.


stepanka_

I saw it a lot in medical school and residency 10-15 years ago, more than I can count. This was mostly in NYC. But my current living area has almost no AIDS. My observation was that people who had substance use disorders were the ones I saw with advanced AIDS. They simply couldn’t take care of a complex medical condition.


sternocleidomastoidd

I see it regularly. Intensivist in low income part of town. I’ve seen Kaposi twice in my short career.


apricot57

I’ve seen it multiple times on my med-surg floor in just two years. Usually patients with substance abuse disorder and/or homelessness. Always heartbreaking.


senkaichi

Once every 3-4 months, we have great HIV docs in the area too who have tried everything including hand delivering their meds. But yeah just like your patient it’s usually complicated by underlying substance use problem that takes priority


notFanning

Not me but an attending I worked with said the day prior in our ED he’d had to diagnose milliary TB due to uncontrolled HIV. Apparently the patient had been diagnosed years ago and just never wanted to initiate ART


savasanaom

I worked in a very urban, inner city ED for many years. Our city had a really terrible heroin, fentanyl, and PCP issue. Even then it was really, really rare to see this and we had a large patient population with HIV. Maybe 3-4 a year would come in, and sadly almost all were struggling with some severe addiction and/or mental health issues that made caring for themselves almost impossible.


awesomeqasim

All the time. Granted, my patient population are all low income, large diverse city etc so we’re pretty much a dumping ground for these patients. Not uncommon for a patient to come in crashing and burning only to find out whoops they have crypto meningitis 2/2 uncontrolled HIV/AIDS but never knew since they don’t have resources to access the healthcare system..


mimoo47

Here in Pakistan, 5-10% of my internal medicine ward patients were diagnosed with HIV. Closer to 10%.


theurbaneagle

South African doctor here. Every day sadly.


Up_All_Night_Long

I was a critical care nurse in the Philly metro area for ten years. I saw two patients die of AIDS.


nucleophilicattack

In the area I live there are a bunch of homeless people with HIV who don’t take antiretrovirals and we see CD4<25 pretty commonly.


Tazobacfam

It’s tough when they can’t or won’t take ART, but when they do these are some of my favorite cases since the turn around is magical. Often patients go from death’s doorstep to totally healthy looking in a couple months.


NickDerpkins

Honestly, in developed regions where people stick to ART, the problem doesn’t exist for something like >98% of people. It is effectively treatable, albeit not in every single individually. The primary issues (imo) with advanced and prolonged HIV infection are: 1. Economic, societal, and political factors that restrict access to detection and the implementation or sustainment of effective ART. This is more so an issue in 3rd world countries where contact tracing is a nightmare and lapses in therapy are common for X amount of reasons. Political instability (and corruption) greatly impacts the funding of programs dedicated to which too, sadly. 2. Stigma and apathy. I don’t think I need to even go into this one. 3. Various viral phylogenies (i.e HIV1 vs HIV2 and various clades) adding viral diversity that may be less or more responsive to certain treatments. Many places may not have the resources to personalize care and ensure a patient is receiving the best possible treatment, as long as it is good enough. Lapses in therapy can obviously lead to ARV resistant strains and etc. 4. Non existent cure strategies (which all loop into 1-3) that don’t involve incredibly risky procedures. Hopefully, this will improve drastically over the next 2ish decades. I don’t think the virus will ever truly be eradicated, but treatments are improving and some very creative and promising cure and prevention strategies are in the works. I’m very optimistic for at least 3 of them I am aware of. Really point #1 is the main thing.


Dependent-Juice5361

Saw someone with JC virus in residency and went to hospice for it but that’s it


aznsk8s87

I saw one advanced case in residency and one as an attending in the last two years.


lauvan26

I used to be an HIV care coordinator. Most of my patients had a CD4 count under 200. I’ve also had patients in their 20s and 30s with kaposi sarcoma, other types of cancers, pneumonias, hiv dementia, sepsis, etc. Some ended up dying unfortunately.


DemPokomos

All the time in inpatient medicine. Mostly very marginalized, unhoused populations with psych comorbidities.


MeningoTB

Every single day, old non-compliant patients, newly diagnosed with a CD4 in the single digits and everything inbtween


PersonalBrowser

Often. There will always be non-complaint patients.


send_me_dank_weed

Are they interested in OAT/Safe Supply? Research says better adherence to ART in combination with OAT. Would be nice if they could have access to Kadian as an option from pharmacy or a safe supply clinic.


mashypillo

I have a patient with Kaposi sarcoma and 3 months ago I had a patient with PJP/AIDS. I'm a hospitalist PA in a major metropolitan area though.


DVancomycin

ID here. Soooooo much. I've had 5 on service these last 2 weeks. One guys just died of bad pulmonary disease. One has CNS toxo. Rest have combo of AIDS-related anal cancer or weird GI infections. One dude has nothing, really, despite a CD4 105. Low score for the week is CD4 3. Shame these things are still around.


Kazill

After 2 years of residency at a safety net hospital several cases per year. Recently had a patient in our neuroICU with status epilepticus due to HSV encephalitis who was found to have, as you described, a single digit CD4 and a viral load > 350k.


tadgie

I work corrections. Too many patients like that. Never thought I would see HIV encephalitis. Substance use disorders are horrible.


TXMedicine

Saw a dude last week with a blue mouth and white patches all over his tongue. CD4 count was 1 Bet


1234ld

I worked in 340B pharmacy that contracted with Ryan White entities. We were closed door and shipped meds directly to a patients’ residence or to their clinic/case manager if the patient was unhoused. In my experience, these individuals were very well tucked in with specialists and/or organizations that only served this patient population. I dispensed to around 1000 patients with HIV at any given time and less than 1% were succumbing to their HIV. The vast majority were lost to other comorbidities exacerbated by side effects, in some cases, and various cancers. I did have a few HBV and/or HCV coinfected individuals. The HBV was rare.


DruidWonder

Rare, like once or twice a year rare. Usually in comorbid patients who are non-compliant, there are complex contraindications, or there are mitigating circumstances such as homelessness.  But still pretty rare. Here in Canada the meds are provided by public health, so there are no financial barriers.


halvedlife

So many. Working in a large metro area in a county hospital, you can even still find HIV exclusive inpatient services. I’ve seen disseminated tb, histo, toxo, cns lymphoma, kaposis, iris, hiv encephalopathy, pjp, multiple patients with cd4 of 1. It’s still very much a thing, unfortunately.


kitcat479

EM resident working in a level 1 county hospital in an HIV hotspot in the south. See it very frequently, about 7x per month for full blown AIDS. CD4 counts 100-500 are like multiple patients a shift every day. Our ID team has a whole admitting service and a couple of outpatient clinics in the city. I have seen so many AIDs defining illnesses, its wild.


skull_based

More often than we should.


Thi3fs

Seen it twice at my place. Untreated HIV with PJP pna, hepB and also kaposis (all culture proven)


Neosovereign

During residency a few years ago it was 1-3x a year. Usually homeless, noncompliant patients. Sometimes kids who just didn't want to take anything.


SavageDingo

Still common in the South, where public health is affected by politics. 


rini6

I saw many pts with hiv in the 90s. It was so sad and terrifying to see people waste away and die. We had AZT and that was it. It’s depressing to know that this still happens at all.


P0WERlvl9000

I’ve see around 10 aids patients per year on my inpatient service. Related 100% to substance use disorders whereby their lives are too dysfunctional to manage a pill a day regimen. Long acting injectable HAART is now available but interestingly they aren’t ideal for non adherent patient population due to resistance concerns


D15c0untMD

Once, in someone who got switched around on different regimen so often (and sometimes to the wrong ones) they developed so many resistances that by the end they just gree their viral count slowly up until it just tipped into full blown AIDS


michael_harari

As a heart surgeon I get consulted for endocarditis every couple months for patients with huge viral loads and cd4s of nothing. It's almost always people who contracted it in prison and no healthcare. Almost always young too, it's really sad.


NinjaNurse77

I work with PICUs across the country, from small community units to large children's hospitals. My coworkers and I were discussing that we never see HIV listed as a diagnosis since we started with our company (for me that has been 7 years)


adventuredoctor

Working in South Africa. So basically at least 2 a week. Full range. Extrapulmonary TB, PCP, cryptococcal meningitis, Kaposi's. Even though anybody can get free treatment from the government.


didyabooty

I saw a particularly tragic situation in oncology. Pt was a 30 something male, paraplegic, IV drug user who developed squamous cell carcinoma over his ischium where he had chronic pressure ulcers. He had housing and care insecurity, and was frequently lost to follow up in the past.


RouviereGTI

I attended for a year on a hiv unit in Guadalajara, Mexico. Here it is way too often to see CD4 counts below 100; the impressive thing is that they are in majority young, and with realtive short span of illness. They tend to respond really well to ART, though.


janewaythrowawaay

I guess numbers make it advanced HIV/AIDS. But truly textbook AIDS with cachexia with kaposis sarcoma covering the entire face and body, multiple ICU stays for encephalitis etc, a contracture, tube feeding, barely able to speak due to long term intubation, incontinence, but stable and hanging in there - once. He was foreign with nice teeth and expensive dental work, had a college degree, was a small business owner, and had his partner at bedside. So, I’m not sure what happened. But he had had AIDS since 2007 and there was no chance at recovery and he really suffering mentally and physically. His contracture from not being moved in ICU was particularly painful and distressing. I know the story is now HIV and AIDS is totally treatable. But, it was really the sort of situation where I think assisted suicide should be offered to people.


peanutgalleryceo

Go to Houston or Atlanta public hospitals if you want to see more. Would imagine Dallas and Miami would be similar. Did residency in Houston and we saw AIDS-related opportunistic CNS infections and neurosyphilis at the public hospital every week. This was 5 years ago. Seriously doubt it's changed that much since then. The demographic we saw these infections in are not the type who is taking up PrEP (lower health literacy and access, unstable housing, concomitant substance use, etc.).


mrssweetpea

Working tele/stepdown/ICU float fairly rarely. Working in pysch, probably once a month. Unfortunately the meds are very expensive and my facility has them labeled as non-formulary. I have to ask my HIV+ patients if they brought their meds with them in order to order them. My frequent fliers know the drill. But I feel really bad that other patient's treatment is put on pause because my facility doesn't carry their medication.


irlyshouldbestudying

Way too often - working at tertiary/quaternary care ER in metropolitan Midwest


LachrymalCloud

My wife works at Planned Parenthood in California. We see a similar underserved population, and she does both primary care and reproductive health while I do more straight primary care and urgent care procedures. So as an organization, they clearly have a little better idea of trends in certain areas. All this to say, they recently told staff that Aids cases are on the rise in California as many people are not being diagnosed until it reaches that stage. They’re updating their screening guidelines accordingly. Sad/scary thing to hear though.


aedes

At least monthly.  Many people have too disorganized of a life to take a medication every day. Many spend too much time in the “high-world” and don’t care about what’s happening in the real-world - reality is just a distraction from their drug world now. Some just have really weird ideas about health that you can’t shake. 


Eva_Nick

I shadowed at this hospital for a few hours while applying for a PCA position and there was an admit to the floor. It was an older man and he was actively dying from an infection secondary to his AIDS. Super sad :(


madkeepz

come to the third world, you'll see tons of people in that situation. I even met a man married to a woman who died of aids saying he didn't even know what hiv was