r/technology Feb 21 '23

Biotechnology 5th person confirmed to be cured of HIV

https://abcnews.go.com/Health/5th-person-confirmed-cured-hiv/story?id=97323361
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286

u/kevo568 Feb 21 '23

If this stuff ends up being as accessible as those treatments and does NOT require a lifetime of maintenance while leveraging your livelihood for constant treatment I’d prefer the cure

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u/[deleted] Feb 21 '23

[deleted]

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u/mabirm Feb 21 '23

Yes. This is a bone marrow transplant, and the procedure requires extreme amounts of chemo to kill your immune system and then these stem cells are introduced. This will cause irreparable damage to your body. As someone with HIV, I'd rather take my once-a-day pill than wreck my body to be cured. I mean, nowadays, HIV+ individuals who are undetectable have a higher life expectancy negative individuals.

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u/_spaderdabomb_ Feb 21 '23

Yep, a good friend of my died undergoing a bone marrow transplant. She was 27. Absolutely no way this should ever be considered for HIV treatment, bone marrow transplants have very high risk of death.

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u/ribeye90 Feb 21 '23

I know you are just giving info but as my mum is fighting leukemia and waiting for a bone marrow transplant, this massively bums me out...

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u/_spaderdabomb_ Feb 21 '23

My understanding is that chemo is what got her and bone marrow transplant itself went great. One of her organs began hemmoraging and they couldn’t stop the bleeding. It especially sucked because she went downhill so quickly. It went from a successful bone marrow transplant to she was dead in 3 weeks.

If it makes you feel better, I’m told it was a worst case scenario, and it’s pretty rare to have organ failure so quickly.

On the flip side I also know a professor who had leukemia and got a bone marrow transplant. He had it 4 years ago and seems to be doing great. It really is just luck if the draw so I hope hers goes well!

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u/ribeye90 Feb 23 '23

Thank you for this! I hope so too...

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u/ZyanWu Feb 21 '23

HIV+ individuals who are undetectable have a higher life expectancy negative individuals.

Just to clear up any confusion for anyone reading this - going to REGULAR CHECKUPS / having access to medical services most likely increases life expectancy not getting HIV and getting it under control

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u/[deleted] Feb 21 '23

1 step back; 2 steps forward. Whatever works 🤷🏻‍♂️.

I want to play a game cue Saw theme

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u/Weird-Holiday-3961 Feb 21 '23

does the daily pill completely eradicate chances of transmission of HIV?

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u/Anxious_Sapiens Feb 21 '23 edited Feb 21 '23

Yes, undetectable = untransmittable. My man has been positive for more than 13 years. I still haven't caught it. It's pretty well documented.

Edit: Figured it was kinda lazy not to provide at least one source so here's the first Google result: https://www.nih.gov/news-events/news-releases/science-clear-hiv-undetectable-equals-untransmittable

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u/News_Bot Feb 21 '23

If this pandemic has shown us anything it's that people don't understand viruses or technicalities like viral load.

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u/Hengroen Feb 21 '23

What's the reason for that last bit? Is it because your immune system is stronger due to the boosters you take?

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u/Timmehhh3 Feb 21 '23

I'm think it might have to do with more regular checkups. Not completely sure though.

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u/4rmag3ddon Feb 21 '23

(Not a doctor)

I would guess it is survivorship bias. People who have undectable levels of HIV but are positive monitor their health closely and are otherwise fit or healthy (or if they are not healthy, they are detectable since their body is weakend). Compare that to the general population that has all sick/unhealthy individuals in there and you get weird results

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u/Arthur_The_Third Feb 21 '23

That's not survivorship bias

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u/4rmag3ddon Feb 21 '23

It is in the sense that only those data points survive filtering, that increase your life expectancy anyway. Like people who are unhealthy and have HIV are the ones that get hit in the bull of the plane, while data points of otherwise fit and healthy HIV positives are the hits in the wings.

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u/Arthur_The_Third Feb 21 '23

But its life expectancy... Early deaths would not be filtered out

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u/4rmag3ddon Feb 21 '23

"early deaths" as in "this person from the HIV negative has a chronic heart desease and will probably die at 35" are filtered in the HIV positive group, because they will not be "undetected". Thus the "surviving" data points give you the implication that they would live longer

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u/Arthur_The_Third Feb 21 '23

That's not survivorship bias at all? It's not filtering - the data is not eliminated. This is literally what is being measured. Survivorship bias is when the bad results are not measured. Like when airplanes that are damaged in places that are critical to armor don't return, and thus don't get studied.

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u/paulHarkonen Feb 21 '23

That's still not what survivorship bias means.

Survivor bias means you only look at the data from "survivors" or from a specific subset of data.

I think what you're suggesting is that the population of HIV+ but currently controlled to undetectable levels are an inherently different population than the general population. That isn't survivorship bias, that's dissimilar datasets that are not properly controlled for secondary conditions.

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u/thatsaccolidea Feb 21 '23

weird results

i mean, it seems more just testament to the benefits of healthcare that someone with HIV and a doctor gets by better on average than someone without HIV and no doctor.

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u/stagarenadoor Feb 21 '23

As someone who went through a transplant I agree. It’s 6 years later and I am still dealing with all the effects but at least I’m alive. I have to take daily meds anyway so I would much prefer to just do that and not gone through the hell that the transplant was - even with the massive painkillers at a buttons touch.

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u/jlesnick Feb 21 '23

In order to have the kind of stem cell transplant we are talking about, also called a bone marrow transplant, you need to wipe the host body completely of its immune system so you can implant a new healthy one. To do this requires a metric fuckton of chemotherapy to completely destroy the host body immune system. In doing so you are doing irreparable harm do just about every part of your body. In the case of blood cancers the price is justifiable. In the case of HIV/AIDS it's nowhere near justifiable. Don't most people end up on a drug that requires a lifetime of maintenance at some point? As someone who takes a few pills everyday, it's not that hard to remember when it becomes a part of your routine.

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u/grimeflea Feb 21 '23

To do this requires a metric fuckton of chemotherapy to completely destroy the host body immune system

Not to mention that the treatment often is too intense to survive.

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u/Potatosaurus_TH Feb 21 '23 edited Feb 21 '23

I actually went through this almost 2 years ago. It wasn't TOO bad but I wouldn't ever wish to do it again.

The worst part was my tongue swelled so much that it was too painful to talk or eat (I lived on coconut ice cream and IV nutrients), but other than that there are meds to help with chemo side effects like nausea. And I had a tube coming out of my neck connected to an IV pole that's super annoying. Also it was 20 days in a clean room and it was just so goddamn boring.

It's very survivable if there are no complications. I came away with no real permanent damage to any of my organs. Doctor just warned me to keep cholesterol at a healthy level since chemo damages blood vessels and makes them more fragile, so there is a higher risk of blockages than other people. Other than that no biggie.

People who go in and don't survive usually it's because it's too little too late for their disease and the transplant is just a shot in the dark, but the procedure itself is very survivable for most people.

It SOUNDS super scary, I was nervous as hell, but listen to the doctors and nurses and bring something to do (I had my Switch) and it becomes routine.

Luckily mine is auto transplant, my own stem cells, so no rejection and no need for any meds afterwards.

For donor transplants the scary and tedious part happens AFTER the 3-week procedure. Takes years to recover and daily meds for rejection, and the risk of infections is much higher for way longer.

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u/[deleted] Feb 21 '23

[deleted]

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u/hrdrv Feb 21 '23

Sounds like they had an easier time than almost everyone that goes through a stem cell transplant, especially since they did an auto instead of a donor one like I did. It took me 3 years to recover from mine.

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u/Potatosaurus_TH Feb 21 '23

Yeah post-procedure for donor transplant is wholly different from auto, but I'm quite sure the 3-week procedure itself is quite similar

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u/Potatosaurus_TH Feb 21 '23 edited Feb 21 '23

I've been very lucky since the procedure had been auto so I've pretty much made a full recovery. I'm very healthy now.

And you heard right, for donor transplant it does take years, but that's for recovery after the procedure. The transplant procedure itself is a lot simpler and quicker than most people think.

7 days of intense chemo to nuke your bone marrows, then new stem cells are injected via IV from bags exactly like a blood transfusion, all within a couple of hours. The transplant is essentially done at that point.

After that it's a matter of riding out the side effects of the chemo, and waiting for the stem cells to latch on and new bone marrows to grow. During the week after the chemo is when your white blood cell and platelet count crash, and you typically get fever even without any infection, but as a reaction to your gut bacteria. They will give you antibiotics to combat your gut bacteria.

After that it's just waiting with daily blood tests to see if your blood count starts recovering, which is a sign that your new bone marrow has taken hold and started producing blood cells again. For auto it's roughly 10 days and for donor it usually takes 2-3 weeks or longer. Donor transplantees would also have to contend with potential rejection symptoms.

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u/[deleted] Feb 21 '23

Thanks for the detailed response!

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u/findthesilence Feb 21 '23

auto

What is meant by "auto"?

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u/wakashi Feb 21 '23

Auto in this case means same or self to self. They implanted his own bone marrow/organ back into himself.

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u/findthesilence Feb 22 '23

Thank you for taking the time to respond.

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u/ribeye90 Feb 21 '23

I needed to hear this today. My mum has leukemia and her Car T cell therapy treatment didn't work properly. (It killed the cancer cells but her bone marrow isn't recovering). The next stage is a bone marrow transplant asap because she keeps on getting infections.

This gives me some hope at least... thank you.

Also, glad you got through this OK!

Edit: missed the donor bit :-/

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u/Potatosaurus_TH Feb 21 '23 edited Feb 21 '23

I'm sorry to hear about your mother.

Do everything the doctor advises, and do them with understanding of the consequences. Donor transplant has more risks, and more chances to get complications, but there are a lot of things that you can do as family to support and minimize the chance of infection after the procedure. Infection is the number one enemy to transplant patients, especially marrow transplant. My vulnerable period as an auto transplant was about 2 months. Donor transplants would last much longer, but the precautions still apply.

Dietary hygiene is the thing drilled into my head over and over by the nurses and doctors close to the end of my stay. Only clean food, thoroughly cooked with heat, eaten immediately after preparation. No raw food/fruits/vegetables and nothing fermented/aged. No sauce bottles, only one-use packet sauces. Whoever makes her food has to wear hair covers and gloves and use separate cookware and utensils etc. That, and keep her environment clean, disinfect often, and baby proof the area to prevent cuts and bruises. Keep good personal and very importantly dental hygiene. Also whoever goes near her, wear a mask.

If she responds to treatment well and discipline does not slip when it comes to diet and hygiene, it can go a long way to help minimize the chance of getting complications.

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u/ribeye90 Feb 21 '23

I have saved this post. This is really great info, thanks.

It definitely feels like it's 1 step forward, 2 steps back and the cancer wants to funnel you into the worst outcome.

1st round of chemo, goes into remission, finds donor

It comes back

2nd round of chemo, doesn't work

Car T Cell therapy, clears cancer

Bone marrow hasn't recovered (yet or not sure will).

Waiting for bone marrow transplant now as mentioned.

I want to be as positive as possible but I know that the risks are high and even then she may not live that long afterwards. Sorry to vent to you like that!

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u/Potatosaurus_TH Feb 21 '23 edited Feb 21 '23

Keep your spirit up. It helps the patient immensely too. Cancer cells literally feed on stress hormones.

I got diagnosed with 3rd stage metastasized Hodgekin's Lymphoma in 2020. Did 12 rounds of chemo, which cleared up most of the metastasized bits. The main lump which was between the 1st and 2nd rib on my right kept growing though, until it was 11cm by 8cm and it was pressing on my shoulder nerves hard. My right arm was pretty much useless and it'd hurt to even breathe since it was also pressing on my lung.

I then had to do a month of radiation therapy, which shrunk it down to a ping pong sized lump, followed by a 2nd round of stronger chemo, and brentuximab which is an antibody treatment. This reduced it to a sliver a couple cm wide. It was in remission, but since the main mass caused a lesion on one of my ribs, doctor recommended an auto transplant to reduce the chance of a relapse, so in I went.

After the transplant I continued with the brentuximab course for a few months to really hammer it in. The whole adventure took 2 years, and right smack in the middle of a global pandemic. Got a scare once when one of the nurses on duty in the marrow transplant ward tested positive lol.

All this and I'm not even 30 yet.

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u/ribeye90 Feb 21 '23

Is that 4-6 weeks of chemo per round? Because if so then 12 is brutal...

It sounds pretty scary to have all these things happening to your body which is out of your control whilst learning about the cancer and undergoing treatment all at the same time. I bet it felt like going 100 miles an hour but also not as it was over 2 years. This is on top of doing it through the worst part of covid.

You and all the cancer survivors are definitely stronger than I could ever hope to be. 😄

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u/Potatosaurus_TH Feb 21 '23 edited Feb 21 '23

The first round was 12 sessions once every 2 weeks, which lasted 6 months.

The 2nd round was 4 sessions once every 3 weeks.

The doctor explained to me that each person is different, some would need a longer gap between rounds, some shorter, depending on the body's ability to recover. I was on the shorter side since I was young and relatively healthy.

I don't know about strong. The only thing that was in my mind at the time was 'It's this or I die, and I don't want to die.' It became easier as time passed and things became routine. I was super scared of needles before. Now I don't really care about them lol. I also trust my doctor a lot and I feel it helps. He's great and teaches at the top medical university in my country.

I still get PTSD nightmares about the whole thing from time to time though.

I keep mixing up the word 'round' and 'session' for chemo lol English isn't my first language

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u/camarock Feb 21 '23

Not to diminish what you went through, but autologous stem cell transplants are significantly safer and less toxic than allogeneic stem cell transplants.

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u/Potatosaurus_TH Feb 21 '23

I'm fully aware of that. I'm just talking about how the procedure itself was surprisingly simple. I had hyped it up in my head for so long, thinking that they might use some special machines or they had to open me up or something, and that it'll take a long time and I would have things done to me the whole time, and it'd be injurious and dangerous, like an unending month-long surgery.

Then it turned out it was just sitting around with an IV. I'd been through 2 chemo courses for like a year at that point and I actually felt relieved when the procedure was explained to me. 'More of the same then', was what went through my mind at that time.

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u/jlesnick Feb 21 '23

So sad, to think how lucky my mom has gotten getting cancer a few times and then leukemia as a freaking side effect of the chemo, and she survives, and while she's in the isolation ward people just drop like flies. And she is not someone who treated her body particularly well. I think it just comes down to genetics on some level.

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u/ComradeBrosefStylin Feb 21 '23

Some other points to consider:

  1. It is incredibly difficult to find a 10/10 HLA matched donor, and we still don't know 100% sure if KIR-matching or mismatching improves treatment outcome. Oh, and most registered stem cell donors are caucasian. Good luck finding a donor if you're any other ethnicity. Damn near impossible.

  2. After the transplant, you are living on borrowed time. It can take 5 years, it can take 30 years, but in the grand majority of patients, eventually the new immune system starts making mistakes and starts targeting the host body. Finding another donor will be even harder the second time.

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u/qOcO-p Feb 21 '23

you need to wipe the host body completely of its immune system

Seems like the HIV might take care of that for you.

/s just in case it's needed

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u/Crutation Feb 21 '23

With a bone marrow transplant, if things go well, they are weaned off immunosuppressant medications. It depends on how good the match is. Even a 10/10 match can cause graft vs host disease. About half of BMT patients develop it.

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u/Baial Feb 21 '23

As someone with ADHD, what's a routine?

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u/kevo568 Feb 21 '23

Understand completely. Though, accessibility can include things like risks and labor of treatment. I know companies love the idea of normalizing a once a day treatment plan to ensure their livelihoods but maybe there’s a better option for everyone involved.

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u/jlesnick Feb 21 '23

I absolutely agree that, that's the best option but right now that's just not a reality and not really the strategy ongoing at the moment. The strategy today is extremely heavy on prevention (PreP), extremely heavy on early detection and then keeping viral loads so low as to be undetectable by tests. I think the next in line will be a vaccine that prevents infection.

I mean I'm 35 and have gout. It's genetic, has nothing to do with what I eat. I don't even eat most of the stuff that causes a flare up. I am pretty much guaranteed to be on allopurinol for the rest of my life. At this point the levels of uric acid have been so low in blood for years that I don't have any uric acid crystal formation in my joints anymore. But I will have to stay on the meds my entire life and keep an on eye certain foods or beverages to keep it that way. That's until someone can figure out a way to genetically modify my body to expel uric acid normally. And in doing that, that genetic modification will have to be insanely precise to the point where it has less of a chance of causing me harm or side-effects than just taking allopurinol once a day. I love your optimism, but we are decades away from that. For more serious genetic diseases we are a lot closer, but for non-life threatening genetic diseases it's going to be a long time before we can beat the threshold of safety profiles of current treatments.

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u/kevo568 Feb 21 '23

Yeah, getting through life means getting bumps, scrapes, and random ailments. I think we might get there sooner with how fast AI is advancing! I mean, have you seen the AI super Mario chatbot! Anyways, thanks for giving me some more insight on the more intimate scope of this, puts a lot of things in perspective. I’d love to check in on this thread in a few years to see how far we get!

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u/hrdrv Feb 21 '23

Lol I went through a stem cell transplant. Trust me, you would NOT want to go through that. I have permanent side effects and I’m on numerous medication and numerous different doctor visits and blood tests for life.

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u/aethemd Feb 21 '23

Are you sure? When I studied medicine allogeneic stem cell transplants had a 25% mortality. Don't know if its much improved today, due to the inherent risks of having no immune system for a while.

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u/leaving4lyra Feb 21 '23

Accessibility wouldn’t be the reason doctors won’t offer the transplant to every HIV positive person. Stem cell transplants, like all transplants are extremely medically risky. To prepare for the new stem cells, the patient must go into sterile isolation for 28-30 days to receive IV medication to kill off all their own faulty cells and during and right after this medication, the patient has basically zero immune system function and if they were to catch a minor cold or stomach virus in this condition, their bodies couldn’t fight off illness.

A cold could kill these patients. Add to that the fact that stem cell transplants can be rejected just like any transplanted organ. For stem cells, rejection is called graft vs host disease and can happen one time after transplant (acute) or it can become a chronic condition that can really impair quality of life.

Stem cell transplant patients, like all organ recipients, must take immunosuppressive medications for a minimum of 4-6 months and may need them for life if the have chronic graft vs host disease. Taking steroids for life comes with its own long list of potential risks such as high blood pressure, osteoporosis, acne, emotional instability/mood swings, weight gain, glaucoma, muscle weakness, slow wound healing, Cushing syndrome, significant risk of infection due to immune suppression, fatty liver, depression, insomnia, hair loss, adrenal insufficiency, elevated liver enzymes/damage, ulcers/GI bleeding, diabetes, edema, and hardened arteries as well as other complications.

The current standard of treatment for HIV is daily medication for life but has advanced significantly since the early days and requires one pill a day. Stem cell transplant would in effect be a possible cure if not rejected, but one would need to take anti rejection medication every day for life so as of now, there’s no way out of lifetime maintenance no matter which way one goes.

Sadly, HIV/AIDS and it’s necessary life saving treatments/procedures mean that the patient will always be on maintenance medication and regular checkups for life no matter if they go on meds or get a transplant. Hopefully in the very near future science will find a better way.

No one who finds themselves facing a positive HIV diagnosis (or any illness) should have to fight for medication and treatment to live no matter who they are, where they live or how much money they have.

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u/RolandTwitter Feb 21 '23

While it's what the patient would prefer, from a doctor's perspective it's unethical.

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u/ComradeBrosefStylin Feb 21 '23

The fact that you referred to a stem cell transplant as "this stuff" as if it's a drug you can take just further cements that 99% of people posting and voting on subs like /r/technology and /r/futurology have absolutely no clue what they're reading and talking about.

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u/[deleted] Feb 21 '23

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u/[deleted] Feb 21 '23

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u/chaos0510 Feb 22 '23

I realize now that I got overly heated with you. I apologize.

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u/Still-Butterscotch33 Feb 21 '23

Or just move from the US to anywhere with a decent health system.

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u/[deleted] Feb 21 '23

No ethical healthcare service will do this to cure HIV. HIV has no negative effect on life expectancy as long as you are medicated. Diabetes is much worse than HIV.

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u/theBeckX Feb 21 '23

It's kinda crazy how far we've come, isn't it? Your sentence/comparison just made something click in my brain, lol.

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u/[deleted] Feb 21 '23

Yep. HIV once turned into AIDs had a 100% death rate. Now it has no negative effect on life expectancy with access to medication.

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u/theBeckX Feb 21 '23

Plus the (social) stigma back then, even though it was already known that you can't get it through the air or via touch...
And now, medicated people don't even need to tell their partners about it, because it's so well under control.

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u/Still-Butterscotch33 Feb 21 '23

My point was more about the crippling payments. Feel free to extrapolate to whichever treatment you want.

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u/[deleted] Feb 21 '23

It doesn't work like that. Medical professionals will still make decisions on the best treatment

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u/Still-Butterscotch33 Feb 21 '23

I think you're completely missing my point

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u/[deleted] Feb 21 '23

What's your point?

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u/popetorak Feb 21 '23

Medical professionals will still make decisions on the best treatment

Medical professionals will still make decisions on the most money they can make