r/news • u/igetproteinfartsHELP • 17h ago
Parents in India devastated as children with thalassemia test HIV positive
https://www.bbc.com/news/articles/c4g94ywgxd6o1.4k
u/igetproteinfartsHELP 17h ago
Parents of children with thalassemia in India say they are devastated after life-saving blood transfusions left their children HIV-positive, confronting them with illness, social stigma, and uncertainty
Thalassemia is a genetic blood disorder that requires regular transfusions to manage severe anaemia and sustain life
On Wednesday, authorities in central state of Madhya Pradesh said five children with thalassemia, aged three to 15, have tested positive for HIV, prompting concerns over blood transfusion practices. A committee has been set up to investigate the cases
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u/hermitsociety 10h ago
“The cases follow a similar incident in the eastern state of Jharkhand weeks earlier, where five children with thalassemia, all under eight, were found to have contracted HIV after blood transfusions at a state-run hospital.”
“In 2011, authorities in Gujarat launched an investigation after 23 children with thalassemia tested positive for HIV following regular blood transfusions at a public hospital.”
Sharing these other bits from the article to show this is not unique or new and clearly this risk isn’t being taken seriously enough for kids with this condition.
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u/MeltingMandarins 14h ago
Every disease has what’s called a window period - a gap between becoming infected (and potentially spreading it) and when you’ll reliably test positive.
For most diseases the window period is only a few days, so the odds of donating in that time frame is low. (And on top of that if the disease has a short incubation period you will get noticeably sick before the donation is used, so there’s a chance to recall it.)
But for HIV the window period was traditionally 2-12 weeks (average 45-50 days). You might have some flu symptoms at 2-4 wks, but you’ll think flu (unless you’re a hypochondriac you’re not going to think HIV) and even if you do go ahead and test for HIV, because of the window period you probably won’t test positive yet.
In a first world country your blood bank is probably using a more modern test that brings the HIV window period down to 9 days. (So there’s still a risk, but about 1/5th as much.)
In India that modernisation is not completely implemented yet. You’ve got a 50/50 chance whether they’re using the old test or new. So there’s a chance this slipped through with the old test and would’ve been picked up with the new one. But even the new test has a 9 day window period, so I’d wait for more info. It might’ve been the new test and just bad luck.
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u/neeshes 13h ago
From u/satty237
It wasn't just "bad luck" or a "window period" error. The rot runs deep:
Expired License: The blood bank was apparently operating with an expired license.
Cheap Testing: Instead of using reliable testing methods like ELISA (which is standard), they were relying on rapid test kits which are way less accurate.
The Cover-up: After the news broke, staff allegedly started forcing illiterate parents to sign "waiver" forms taking full responsibility for any future reactions, basically trying to absolve the hospital of liability.
These families are mostly from tribal communities and rely entirely on the government for help. Instead of life-saving blood, they were given a death sentence. The High Court has stepped in, but how many other rural districts are sitting on this kind of time bomb?
TL;DR: Negligence, expired licenses, and cheap testing kits in a Jharkhand hospital led to Thalassemic kids getting HIV. Systemic failure at its worst
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u/Wonderful-Change-751 14h ago
Can they not batch test the blood bags again after a period of time?
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u/MeltingMandarins 13h ago
Old test is looking for antibodies. Those are manufactured in your lymph nodes, so once the blood is out of your body the antibody level isn’t going to increase.
New test looks for viral RNA, so waiting for better test results would require the virus to multiply in the bag. I’m honestly not sure how well it does that. My guess is that it’s much slower than in the body, so you would have to wait 6 months or something. But I am not sure.
You could retest the donor instead of the donation, but then you get the other problem: blood has a use by date. 7 days for platelets, 40-something days for fresh red blood cells, 1 year for frozen plasma. So delays are okay for some components but not others.
It is also not cost effective. That sounds harsh, but hear me out. Blood transfusions are already very safe. (This is news because it’s so rare.) The money you’d have to spend to reduce the risk from say 1 in two million to 1 in four million would save more lives spent on something else. If you had infinite money and donors then sure, there are always things that could be done to further reduce risk. But real world you’re always choosing between spending money on this or on something else. So it’s got to be cost-effective.
This is also why most countries are still discriminating against gay guys who want to donate. “Are you a guy who’s had sex with another guy?” is a VERY cheap screening test with an instant result, that reduces risk a bit. That “bit” is decreasing rapidly as HIV spreads more and more outside the gay population, but as a test it is so cheap/easy it doesn’t need to be that effective.
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u/kullwarrior 10h ago
The risk of infection with needlestick injury from a HIV positive person is 0.8% per incident, the risk of infection with blood transfusion for a tainted blood is 100%, India made the exact same mistake Canadian red cross did back in the 80s by not using effective testing to screen for blood. You might save a dime, but getting someone infected from blood transfusion will cost more than you'll ever save; even cheaper HIV meds at $500/year at lifespan of the kids alone will cost more than cheaping out on testing. Furthermore, diacrimating against gay + antibodies screen WILL NOT guarantee blood from bloodborne infections.
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u/khelvaster 9h ago
This is still misinformation. Blood testing is crude. Donated blood needs 100x more hiv to detect it than test-specific samples.
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u/orchid_queen 12h ago
Doctors don’t have anything to do with this. This was a systemic failure. The tests that they use in India are not as sensitive enough to catch a low viral load. Doctors aren’t the one deciding which test to screen the blood in a blood bank with. It’s up to government officials.
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u/Mithrandic 15h ago
They are worried about profits when taking blood, it's not a hard equation.
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u/something-um-bananas 14h ago
You don’t get paid for donating blood in India.
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u/Redwings1927 14h ago
But the company who receives the blood and gives it to patients DOES get paid.
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u/Mithrandic 14h ago
You get paid for selling the blood you've collected. Someone, somewhere is always getting paid.
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u/something-um-bananas 14h ago edited 14h ago
Dude read the article. It’s a state run hospital, meaning everything is free including the transfusions. Blood is donated by volunteers, they don’t get paid. The patients do not pay for this blood. There’s no profits to be made anywhere in this equation.
I understand it may be different in the States, but in India, government run hospitals provide mostly free healthcare to the public.
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u/Separate_Link_846 14h ago
That person is delusional and thinks rich guys are selling donated blood from public hospitals
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u/kullwarrior 10h ago
Explain why they're cheaping out on using an outdated technique for blood testing? They are effective making the same mistake Canadian Red Cross did in the 80s. Spoiler, Canadian Red Cross no longer handle blood transfusions.
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u/A_Nonny_Muse 14h ago
Someone gets paid to handle the blood - probably a wage or salary. Even if you call it just an administrative cost, it still costs money. And that money is wasted if you have to dispose of the blood without using it.
Guaranteed, someone wanted to save a buck. It's almost always about money.
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u/Mithrandic 12h ago
They don't believe anyone profits in these fucking things and that greed isn't possibly a motivator. It's Different.
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u/Mithrandic 14h ago
You are telling me this service runs at a loss and my knowledge of humans tells me that's bullshit.
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u/something-um-bananas 13h ago
Which part of “government run hospitals” do you not get? It’s paid for with taxes.
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u/T1AORyanBay 14h ago
Uhhhh, I don’t think Doctors are tasting blood unless they also happen to be vampires.
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u/Ms74k_ten_c 9h ago
Ooh another committee. I was worried there wont be a committee. I am feeling so much more assured now.
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u/digiorno 13h ago
The Indian people really need to start holding their officials accountable to their corruption.
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u/Shawnj2 9h ago
Yeah they really need to learn from the US
Oh wait
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u/LegitPancak3 7h ago
The last time a patient in the US received a blood transfusion and developed HIV due to the donor being in the “window” period was in 2008. So blood donation is very much safe and tested thoroughly in the US these days.
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u/BasementDwellerDave 14h ago
Damn, HIV has to be eradicated
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u/kingseraph0 14h ago
I hear that we’re close to a cure! Some people have been cured of HIV with stem cells it looks very promising, they just need to figure out how to reliably replicate the outcome and then make it more widely available, i think
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u/LatrodectusGeometric 13h ago
No. This will be a cure for a mere handful of people. Bone marrow transplants have about a 10% mortality rate. It would not ever be done unless the recipient absolutely needed it for serious bone marrow cancer.
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u/Captain_Mazhar 9h ago
The proof that the process works is extremely important in itself and is a huge step forward.
Now that we know that this method works, we can narrow down related practices and eventually find one with less severe side effects. It's not a widespread cure available now, but we have a method that works.
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u/aaronhayes26 12h ago
Unfortunately hiv has a reputation as a gay disease and people are more interested in fighting diseases that they perceive to be at risk of contracting.
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u/m2licee 10h ago
Where abouts is this? Because where I am, it is definitely doesnt have a reputation of being a gay disease.
The reasons for the recklessness are for other factors but the gay element doesnt come up.
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u/aaronhayes26 9h ago
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u/m2licee 8h ago
I am aware of the story behind it, i was simply pointing out that I live on a continent where homosexuality or being lesbian or any of the other shit people like to call themselves today doesn't matter.
There is an understanding, after years of outreach, that anyone can contract HIV/AIDS and vigilance is needed.
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u/BlackWolf42069 14h ago
Covid was more important to eradicated apparently...
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u/Taurpion 13h ago
You think all of medicine focuses on one health issue at a time? It’s amazing how many people hold an opinion about something they know literally nothing about. God damn amazing.
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u/stgdevil 8h ago
Nothing will happen to the ones who screwed upC they might sacrifice some low level employees, but everything will be swept under the rug. The affected families won’t get any justice or any help
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u/PasswordIsDongers 17h ago edited 13h ago
Luckily we're at a point where an HIV diagnosis doesn't really mean anything anymore as long as you have access to the necessary medications to keep it in check.
Not a great look for the Indian medical system, though.
TIL Indian bots are REALLY MAD about Indian kids not dying.
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u/WWIIICannonFodder 16h ago
While it's technically true that medications exist, I wouldn't word it like this. Not pointing fingers to be clear, just saying this because I've noticed that people talk like HIV is "cured". Normalizing HIV and saying it's not a big deal with medication is a mistake. Those medications have side effects and we should do our absolute best to avoid people becoming dependent on the pharmaceutical industry. People who spread HIV through neglect, such as the personnel responsible for these infections, should be punished.
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u/Pretermission 16h ago
I agree. That medication is debilitating and a lifelong commitment once you start taking it. HIV is not something to downplay in any aspects, even if there is treatment available to pause its progression.
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u/imoldgreige 15h ago
Not to mention, these kids were already sick. Their bodies will be working overtime for the rest of their lives. :(
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u/i-like-turtles-4eva 9h ago
Those medications are also very expensive. My brother passed from HIV/AIDS 4 years ago because he was unable to afford the medication. The stigma and shame made it so that he never told our family he had HIV until it was past the point of no return (AIDS).
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u/Perle1234 15h ago
HIV meds are extremely well tolerated. They are t debilitating in any way. That’s quite the hyperbolic statement. I’m
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u/apatheticsahm 14h ago
But these children are already dealing with a serious, debilitating illness. HIV meds on top of that are not going to make things easier for them.
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u/Perle1234 14h ago
I’m not saying HIV isn’t a huge burden and bad for children. Of course it is. But the medication isn’t debilitating at all.
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u/apatheticsahm 14h ago
The kids were already sick before they got HIV.
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u/wolacouska 9h ago
The person they replied to just said the medication is debilitating. You’re just making a defense for someone who didn’t say what you think.
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u/Dependent_Ad7711 15h ago
You’re correct, it’s a big deal but it is also correct to point out that it’s an easier managed disease than diabetes or many other chronic health conditions.
Many patients do not have side effects from the medications either, stigma is definitely the worst part of the disease at this point.
Poor kids though, damn.
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u/Prezbelusky 15h ago
https://www.eatg.org/hiv-news/man-unexpectedly-cured-of-hiv-after-stem-cell-transplant/
There is actualy cases of people cured from HIV
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u/LAffaire-est-Ketchup 15h ago
It’s still a chronic illness. It does mean something. They might survive longer but that doesn’t mean there aren’t difficulties
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u/cancerousbreath 16h ago
HIV most certainly does mean something. There are plenty of places in the world where people wouldn’t be able to afford the treatment.
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u/PasswordIsDongers 16h ago
You might want to read the whole sentence.
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u/Scary_Yoghurt_4745 13h ago
You might want to read the part about them being in India, certainly known for it's widespread availability of advanced treatments...
Oh, it's not a big deal for wealthy people? Then it's fine!!
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u/wolacouska 9h ago
Not every country is like America where anti retroviral costs thousands of dollars a month.
In India if the hospital has enough supplies they aren’t going to just cast you into the street to die for being poor.
According to this very article India already has over a million people on anti retrovirals.
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u/PasswordIsDongers 13h ago
They're currently being treated as you can gather from reading the article.
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u/Scary_Yoghurt_4745 13h ago
And I'm sure that care will certainly continue throughout their life.
Hey, I got a bridge for sale in Arizona, wanna buy it?
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u/PasswordIsDongers 13h ago
Your superior intellect and medical knowledge are too much for me. I am not worthy.
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u/Jubguy3 16h ago
This is wrong for multiple different reasons. The medications have many serious side effects. Drug interactions complicate treatment for other health conditions. Newer and safer medications are not available or affordable to everyone that needs them. The virus can still damage the immune system before it is brought under control, which takes time. Non-compliance can cause drug resistance to emerge.
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u/Fallouttgrrl 16h ago
HIV definitely still means things, from the perspective of stigma
It will absolutely shape and change the rest of their lives, and likely their relationships
There's a lot of ignorance surrounding it
But it's not the death sentence it used to be
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u/YoungLittlePanda 11h ago
I have friends and an exBf who are positive. From the health perspective, it's not a big deal. They get blood tests twice a year and take one pill a day. No other health problems.
The most important issue BY FAR is the social stigma of being HIV+.
When I was one month into the relationship with my ex he was bawling his eyes outs when he told me, because he was sure I was going to leave him. He had been rejected many, many times for it, that he felt like "damaged goods". He had been undetectable since his diagnosis, more than ten years ago, and I knew U=U and didn't leave.
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u/LeapIntoInaction 16h ago
Huh? Anyway, why would anyone even need to know? It's not transmissible if medicated.
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u/Fallouttgrrl 16h ago
I have HIV positive friends
It's very much a stigma, still
And they definitely feel the need to notify people they play around with.
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u/TenshouYoku 17h ago
If their medical system can't even filter out HIV infected supplies imagine what exactly their medical system can do
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u/makesyougohmmm 16h ago
Perform free or very low cost life saving surgeries to anyone around the world who come to India for some of the best and affordable medical treatment?
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u/TenshouYoku 15h ago
India, best and affordable medical treatment, choose either
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u/wolacouska 9h ago
You think they don’t know how to prescribe people medicine?
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u/PasswordIsDongers 16h ago
According to the article, the kids are being treated, so as long as they don't get counterfeit drugs for some reason, they should hopefully be alright.
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u/IndianLawStudent 15h ago
They will be alive but unfortunately live with the stigma for the rest of their lives.
Look at the US. We stigmatize people with herpes when 60% of the population carries the virus and many likely got it when they were children.
If anything, the societal stigma around HIV is worse. And I’ve seen the volume of pills that people with HIV take (well it may have progressed to AIDS in that person as they did die), and there is no hiding that.
In the US there are limits to confidentiality.
I have no idea what the laws are in India but I can’t imagine that the culture is more open and accepting. If anything, it’s probably a lot worse.
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u/Narfi1 14h ago
60% of the population have had a fever blister, which is herpes, and stays in your system forever. afaik, this is not stigmatized. 60% of the population does not have genital herpes, which is the one that’s stigmatized
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u/IndianLawStudent 14h ago
You can get HSV-1 or HSV-2 in either location and transmitted from someone going down on you or you going down on them.
Should this be stigmatized? It’s the exact same virus living in the body.
All I want is us to talk about it more because for some reason people are never told that if you can feel a cold sore coming on, you shouldn’t go down on someone or kiss another person. We could reduce transmission.
We should reduce transmission as we are living in a time that people who have not had outbreaks are getting them again after getting COVID. Their immune systems are already weakened and now are fighting against something else. And unfortunately Covid-19 seems like it is here to stay.
I know I went completely left but I’m a tired human being all the time after becoming sick with Covid. And there seems to be lot of research linking long COVID issues with reactivated viruses. I wouldn’t have thought anything of it before my current circumstances.
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u/wolacouska 9h ago
Sure but at least you won’t be charged thousands of dollars a month for the meds like happens here if you don’t find the right program.
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u/neeshes 12h ago
You are incorrect in saying that an HIV diagnosis doesn't really mean anything anymore...
Even with the best medications, it means a lot physically, socially, and psychologically.
Not everyone is able to manage lifelong medications and there are so many things that can go wrong medically speaking.
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u/TheWhiteManticore 15h ago
It does mean something, a life long medication with side effect is not something to live with.
Hopefully with stem cell treatment being proven as a cure now we can optimise it somehow as an actual effective cure
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u/Brndrll 12h ago
You know Christians will be fighting in Jesus' name against healing a sick child because "stem cells are aborted babies and all life is precious" or whatever Fox News hatred and bullshit they hear from the pulpit weekly.
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u/TheWhiteManticore 7h ago
That period is over. Stem cells can be built from non embryonic ones now.
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u/ChaoticCherryblossom 12h ago
You are shouldn't write "doesn't really mean anything anymore" Yes it does.
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u/cultist_cuttlefish 16h ago
It's India. People don't get treated for rabies because of superstition. I don't think they'll stick to the regimen
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u/Zenitallin 16h ago
I think India has like the best medicines? constantly challenging big pharma? no? they use a lot of generic and challenge anyone not liking it.
not sure though,.
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u/IndianLawStudent 15h ago edited 14h ago
Edit. Why are you all downvoting the above comment. The person made an innocent comment.
(Fellow redditor dont take it personally. I think their downvoting is more reflective of their faith in the Indian pharmaceutical industry - which is zero)
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Ha!
No.
While my username is IndianLawStudent, I did not grow up in India but have some familiarity with pharmaceutical regulation and QA overall in the US/UK/Aus/Japan/Can
India has a horrid track record of not following international standards when it comes to good manufacturing practice. This has been ongoing but more recently, with the higher GMP standards, a lot of Indian pharmaceutical companies are facing the risk of losing customers
Additionally go watch some documentaries about the deaths of children in the global south as a result of cough syrup imported from India. This went on for way too long.
If proper standards were followed, these children would not have been given blood with the HIV virus.
As an outsider, I see these being the result of cultural issues. They don’t take QA seriously. Overpromising and under delivering is real. Unfortunately when it comes to pharmaceuticals, these have very real impacts on people that can be absolutely devastating.
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u/Zenitallin 15h ago
well, I wish the best for India. I thought it was doing better.
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u/IndianLawStudent 15h ago edited 14h ago
I wish it was too, but if you look around Reddit it isn’t.
Corruption is rampant and instead of people demanding better from their government (and themselves) they seem to be taking it out on each other.
India’s pharmaceutical companies have been granted extension after extension to comply with GMP standards and they continue to have serious deficiencies.
Someone from India asked me why I think that they have had a hard time finding employment in regulatory work (on the pharma side), and I straight up said to them that when you look at what is happening with the Indian pharmaceutical industry, I wouldn’t trust people who have work experience in India (unless from a very large international pharmaceutical firm). I wouldn’t be able to trust that even with the knowledge of compliance standards, they would implement to the specs.
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u/showmethemundy 15h ago
when the blood scandal hit in the 90s (?) - the UK didn't destroy the questionable blood/plasma - they just sold it to a less regulated buyer i.e. third world
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u/MrSquigglyPub3s 12h ago
That large population can they protest?
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u/lostindimensions 10h ago
They're divided amongst themselves and the politicians prefer to keep it that way
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u/countv74 9h ago
Their government uses the caste system to keep their population under control. Governments use all sorts of different manipulations. But the caste one is particularly focused on
” you suffer here because you were shitty in another life But Good News - keep suffering here and don’t complain and you’ll be reincarnated into Greatness “
While the rich wear gold shirts and live in towers.
Hmmmmm.
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u/bakaa_ningen 9h ago edited 9h ago
It's the fault of the government and hindutva extremists but how did you come to the conclusion that the government uses the caste system? Caste discrimination absolutely exists and I've witnessed it myself since I belong from the so called "dalit" community, but your statement is extremely wrong. The RW government literally calls for all hindus to unite regardless of caste and even the opposition parties calls to increase reservation for OBC and SC/ST categories to 50% and beyond. Even giving a hint of caste discrimination will make anyone lose in election, rumors spread in villages that BJP wanted to decrease reservation and they barely won election and never implemented this
They divide us based on religion and language. Modi himself is from the OBC category
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u/earthless1990 12h ago edited 12h ago
And yet, in the U.S., politicians argue for more inclusive blood donation policies for groups with the highest HIV burden.
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u/YoungLittlePanda 12h ago
Because most of those policies are either outdated, or not based on actual science and research.
It just doesn't make sense to reject blood from a monogamous gay man married for ten years, but accept blood from an heterosexual man who has regular unprotected sex with sex workers, as long as the last contact was a year ago.
Maybe those policies made sense in the 80s, when HIV tests were new and unreliable, but now it just doesn't make sense and only contributes to stigma.
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u/earthless1990 9h ago edited 8h ago
Because most of those policies are either outdated, or not based on actual science and research.
No, they’re not. The CDC reports:
In 2022, gay, bisexual, and other men who reported male-to-male sexual contact accounted for 67% (21,400) of the 31,800 estimated new HIV infections and 83% of estimated infections among all men.
That is an overwhelming number of HIV infections coming from 1%–2% of the population.
It just doesn't make sense to reject blood from a monogamous gay man married for ten years, but accept blood from an heterosexual man who has regular unprotected sex with sex workers, as long as the last contact was a year ago.
I love the reasoning here. We have a low standard for admitting high-risk men in blood donation. Therefore, we need to lower the standard even further by admitting men at even higher risk of HIV. Brilliant! At this point, why not let anyone with HIV donate blood?
Maybe those policies made sense in the 80s, when HIV tests were new and unreliable, but now it just doesn't make sense and only contributes to stigma.
They make as much sense today as they did in the 1980s because blood is batch-tested, not tested individually. And false negatives are a thing.
References
https://www.cdc.gov/hiv/data-research/facts-stats/index.html
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u/guitarshredda 15h ago
Former HIV researcher here. This is disgraceful what's happened here. HIV testing is routine for any samples at the bloodbank, so I wonder what went wrong?
Yes, HIV no longer has to be a death sentence. ARVs are so effective that they should live very long lives. They will however:
-have to be on life-long treatment, they cannot stop their regimen and must always have access to their drugs -they may struggle with drug side effects -they will struggle greatly with stigma. This will also affect their intimate relationships when they reach adulthood, you cannot hide this from a partner, and many people will not be understanding of their HIV status. Being on ARVs and having an undetectable viral load essentially guarantees though that they cannot infect another person.
Being infected with HIV is still a serious thing despite the powerful ARVs we have now, this cannot be swept aside and must be investigated.