I feel like there have been so many advancements in the HIV space that have been coming together these past few years. I'm so excited by the progress that has been made and I hope one day we can eradicate it completely. Kudos to everyone who has been working towards this goal
We haven't even started to see the potential for using the body to manufacture the drugs needed to fix all kinds of ailments. It's going to be a very interesting time that COVID has brought forward dramatically I'm guessing.
Speaking as an enthusiast, it does seem like there will be a shift from certain drugs being manufactured by a pharmaceuticals producer to self-manufacture from mRNA sequence delivery. I wonder what it means for pharmaceutical companies that have IP for, say insulin, but someone else claims control of the mRNA code that triggers it's production?
That may be a bad example but the “patents on insulin” are on the specific processes to create it not on insulin itself. This would be another unique process.
Is there any good sci-fi in this direction? It seems like cybernetics usually involves machines; genetic engineering is another popular one. But thinking about cells as Turing machines you can feed code to seems like a nice big idea.
Enzymes are proteins that accelerate chemical reactions.
Genetic engineering is already used to manufacture some chemicals by modifying the DNA of microbes to produce the necessary enzymes. The microbes then consume the precursor chemicals and synthesise the product.
Indeed every natural bioactive chemical is manufactured by proteins in the form of enzymes.
So the mRNA for the necessary enzymes could be given to a person, and their own cells would become short term chemical factories for their medication.
The problem is getting the cells to synthesise the right amount of a drug, and mRNA is quickly destroyed so would require repeated dosing just like regular drug administration. For something permanent CRISPR-Cas9 would be required to edit the actual DNA of the cells.
A DIY biohacker cured his lactose intolerance by engineering a virus to modify his cells to produce the lactase enzyme in his digestive tract. I think the results lasted several months in that case but could be wrong, may have been permanent. Video of the project on YouTube.
The video: https://youtu.be/J3FcbFqSoQY - and it did wear off after several months, he discusses it in follow up videos. Speaking for myself, taking a lactose CRISPR treatment twice a year sounds pretty nice compared to avoiding dairy and/or taking lactase with many meals.
Seems like they simply copied this 1998 experiment: "Peroral gene therapy of lactose intolerance using an adeno-associated virus vector", https://www.nature.com/articles/nm1098_1131
In addition to most of the substantive details, the screenshot of "Fig. 2" shown at the 4:45 mark matches Figure 2 in the HTML version of the paper at that link. (EDIT: Screenshot seems to be enlarged clip from the PDF at https://www.nature.com/articles/nm1098_1131.pdf)
Yes, which would put it in a pretty much different category of thing than is usually meant by "drug." On the other hand, how many times have you heard "works by binding to the same active site as <something the body produces>"? It'd be cool if we could get the body to produce more of that something.
Yep, there are already classes of therapeutic proteins, the most notorious of which is insulin. With mRNA tech, you unlock even more intracellular proteins that were previous impossible to get through the cell wall.
> On the other hand, how many times have you heard "works by binding to the same active site as <something the body produces>"? It'd be cool if we could get the body to produce more of that something.
Note that binding to the same active site as something the body produces is also a strategy for imagining that you produce less of that thing. There's "binding to the same active site [and triggering it]" and there's "binding to the same active site [and plugging it]".
As to how often this strategy is used... what other strategies are there? You produce the effect you want by triggering it to occur. You inhibit the effect you don't want by blocking it from occurring.
You could think of something like a lactase supplement to help you digest milk, and that wouldn't be binding to active sites of your own molecules, but it still works by binding to particular sites on the lactose. Chemicals have their effects through chemical reactions.
> Note that binding to the same active site as something
> the body produces is also a strategy for imagining that you
> produce less of that thing. There's "binding to the
> same active site [and triggering it]" and there's "binding to
> the same active site [and plugging it]".
This is how caffeine works. Broadly, it binds to the adenocine receptors and prevents the adenocine from binding. Adenocine makes us tired (less alert) and caffeine inhibits that process.
As far as vaccines go mRNA is one of the least proven technologies out there. From what we've found with COVID-19, it won't stop viral transmission, and loses efficacy after a few short months. And HIV mutates about 500 times faster than COVID-19. The fact that the drug companies, who are financially vested in this technology claim it's a miracle cure for anything under the sun is not particularly surprising.
Some of the current HIV vaccines being tested right now work on the assumption that if they can elicit a certain antibody response from the immune system, it will produce specific antibodies that have been shown to work against HIV in humans.
If you can design an mRNA vaccine that encodes those proteins directly, you won't have to design vaccines with the mere hope that the immune system will develop the right antibodies in response to them.
From what I understand about HIV vaccines, finding the right inoculant that elicits the correct HIV eliminating antibody response is the hard part that mRNA vaccines might be able to tackle directly.
My wife is 33 weeks pregnant with our first. We plan to donate our baby’s cord blood to research. Cool to think it could help researchers develop treatments like this in some small way!
In a perfect world, I think everyone has access to their own stem cells as opposed to sifting thru donor pool.
Donating is definitely awesome, but there's a lot of research surrounding how cord blood transplantation from related donors (or yourself) increases your chance of survival from a stem cell transplant vs. using an unrelated donor. https://www.nejm.org/doi/full/10.1056/nejm199708073370602 - there's a chance of rejection. This woman found a partial match, but she was lucky. I assume she's only 2 races or a common mix i.e. half white, half something else
Finding a match later on can also be much more expensive than keeping your own!
It's better to donate to a public bank. According to the AAP the child itself is almost certainly not going to be able to benefit from their own stem cells because whatever disease you're trying to treat them for is most likely already present in the stem cells. It can be used to treat siblings though. But overall the advice is to donate to a public bank unless you already have a child with a medical condition in your family that could benefit from cord blood from their sibling.
I've done this with my wisdom teeth when they needed to come out. I used this company: ndpl.net. There were a few competitors but it's been years since I looked into it. My stem cells are sitting in a lab, frozen, awaiting my command to send them anywhere in the world for medical treatment.
I still have some wisdom teeth way up and back. They were too far back to conveniently remove. Do they still have fetal stem-cells in them that can be harvested, if need be?
From what I've read, there's a tradeoff with time prior to removal however. The earlier in your life you take them out and freeze them, the higher their regeneration factor is. The DPSC (Dental Pulp Stem Cells) should always be there as long as the tooth is alive.
We're expecting a baby, and in hospital waiting rooms we've been approached by a few different companies hawking cord-blood storage (in Singapore).
After some brief research I concluded it was probably a waste of money for us as donors, but it's probably valuable to donate for someone else. I haven't yet asked our obstetrician whether that's an option.
with companies like mine haha AnjaHealth.com - we send parents a kit, they can collect, we pick it up and bring it to a lab, and parents can access it later in life
because the placenta continues to perform gas exchange after delivery, sick and preterm infants are likely to benefit most from additional blood volume derived from continued placental transfusion.
Thanks for the tip! At our hospital the standard of care is delayed cord clamping, although it sounds like they wait only a few minutes, not 15+ minutes. It used to be done in ~<1 minute, I guess, so a few minutes is called delayed now. Do you have a good reference recommending to wait “long as possible”?
Wait until all the blood has passed through and the cord is white. Baby will likely be a little jaundiced but if you clamp too early they will have low blood levels. Don't let the hospital staff rush you (they will try). Best to let nature run its course IMO.
Write a birth plan, make the doctor or hospital staff read it and confirm with them they read it.
We had told the doctor we wanted delayed cord clamping (not the habit in hk), he acknowledged it despite warning us about jaundice (he was old fashioned). Then during the actual delivery, he completely forgot about it and both of us were too sleep deprived to force the issue.
This is why having a doula is so valuable. She had a clear head and advocated for us. I caught the baby and never would have asked. But the doula knew the correct time to remind the doctor.
there isn't any evidence that delaying cord clamping for longer than 60 seconds gives the baby more benefits than delaying cord clamping for 30-60 seconds
I feel like someone whose business is freezing cord blood should probably cite some sources when discussing guidelines for delayed cord clamping, which reduces the amount of blood left in the umbilical cord. Honestly, I don't know much about it and you could very well be right, but it seems like a conflict of interest.
According to the small pamphlet I got, there's a small benefit to the baby's immune system if the cord isn't cut immediately and some of the blood in there is allowed to pump into the baby.
The umbilical cord blood storage industry is under-regulated and untrustworthy, much like another freezing-related industry, cryonics. Both are full of examples of amateurs, bad actors, and mundane issues like bankruptcy resulting in things that were promised to be kept frozen for decades or centuries ending up in waste disposal after 5 years. Like this example from Canada:
“It’s been said that a person dies twice, once when the body dies & once when their name is last spoken. There’s also a third time, when the company storing your frozen corpse can’t pay the power bill.”
I know some people keep the cord blood in a private bank. In my opinion it only makes sense if you have family history of or current relative with a disease that could be treated with it.
Since the hospital we are using (Stanford LPCH) has a research program that will come collect it with no extra steps on our side, it seemed like a good choice.
Cord blood is a good source of "your own" stem cells. We do not know what is going to be possible with such cells 20 or 30 years from now; possibly unimaginable things. I would save them if I had a child. Just in case.
I get that it is very tempting. We all want to do anything that could help our kids. However, there are also an endless number of things people are selling to new parents that prey on that reflex. I truly don’t know the right thing to do here, but the position I mentioned earlier basically follows the recommendations from the American Academy of Pediatrics: https://publications.aap.org/pediatrics/article/140/5/e20172...
This was from 2017 and is basically the same as a reference I found from 2007. Has there been any actual changes in the state of the art since it was published?
If few other people save it, then nobody will develop treatments using it, since a treatment is only developed if it makes financial sense, and if <1% of potential patients for a treatment have cord blood banked, then a treatment that requires their personal cord blood will never be developed.
There are many companies doing this now and many (affluent) parents are saving it. I think your analysis misses the mark, even if there's a niche market, if it's comprised of people willing to spend lots of money, it can make sense as a business.
we did it. It depends on the freezer. at -80C they say it's for a lifetime with a caveat that the technology is only 23 years old so none can prove it's for a lifetime, yet
Make sure they don’t forget! In the chaos after birth, sometimes these things slip through. I’m not sure what happened when our first was born, but I do remember the folks who came by a bit later to pick up the cord being annoyed that the delivery team didn’t save it.
apparently the founder of Anja Health said that she launched it after her sibling almost drowned and needed it, so maybe it make sense even without a predisposition?
If I had a kid and enough disposable income I'd do it without even thinking about it to be honest
Yes, it makes sense without a predisposition. Things like HIV with the woman cited in the article, cerebral palsy due to a near drowning accident, etc. could all be use cases. Our own team has a sales exec who used stem cells for a knee injury he got in track & field in high school. Another has a grandfather who used it for dementia.
BTW, a lot of our clients self identify as having <75k in income. Our pricing is 35-85/mo. for 8 years to cover 20 years of storage. :D so hopefully you don't need to allocate too much disposable income. It's still an investment for sure, but many think it's worth it. Myself included obviously haha
I think freezing for future use is the best way to go. A few reasons:
1) cord blood transplants from related donors have higher survival rates than unrelated donors https://www.nejm.org/doi/full/10.1056/nejm199708073370602
2) this woman was lucky that she was able to find a partial match, but many don't. The combination of using a related blood donor + an unrelated cord blood donor was a lucky strike. I think for many very mixed race folks or especially people of color (specifically Black communities), they may not be so lucky
3) the cost of finding a donor can be extremely steep. Some may be covered by insurance, but not all of it will be. My guess is this woman who was cured from HIV is relatively affluent to some degree. Banking cord blood is considered to be for affluent folks, but the difference in cost of banking vs. finding a donor later on is massive
HIV always seemed like the worst of the worst viruses to cure permanently, but it feels like we're making some serious headway here.
Curing latent Chicken Pox, HPV, and the other common viruses would be a fantastic improvement over our vaccination boosters that are fantastic, but still probabilistic.
I have always entertained a "what if?" question here:
What if... the common cold is like a folk tradition of viruses that do us little harm and keep our immune system on its toes, and that as such a "cure for the common cold" is the wrong thing to want?
To be clear I am no kind of biologist and I have no reason to believe this is anything other than a silly idea, but I still like it.
The flip side: what if... the common cold causes small amounts of permanent damage, or damage that doesn't show up until much later in life? What if all viruses are this way, and preventing infection/bad infection in the first place is an enormous net benefit?
It is a silly idea. There's pretty good evidence it's false. Your immune system might benefit from some types of stimulation, but those are from:
1) Parasites
2) Generic (as opposed to human) bacteria
3) Mild, latent infections which co-evolved with humans
The problem is that most diseases like colds, flus, smallpox, measles, etc. are relatively recent in evolutionary terms. They rose with the rise of civilizations. In hunter-gatherer times, things like colds didn't exist.
This sounds a lot like "paleo diet" reasoning, which mostly seems to be bunk.
I am not saying that your claim definitely is wrong, but it does sound a lot like other claims that many people believe are not valid. So my initial reaction is "extreme skepticism".
Even if these viruses didn't exist before modern civilization, how do we know that they aren't at all relevant for immune system "fitness" in modern humans?
You're welcome to that reaction. I'd recommend the book "Immune: A Journey into the Mysterious System That Keeps You Alive" by Philipp Dettmer.
It has a whole chapter on the hygiene hypothesis, which parts have been debunked, which parts have weak scientific evidence, and which parts have strong scientific evidence.
I don't think I wrote anything out-of-line with mainstream science. It might be wrong -- scientific knowledge progresses, and we're still learning a lot -- but it's not "paleo diet" junk science.
The key mistake you're making is to assume the immune system benefits from some form of "fitness;" it doesn't. It's not a muscle to be exercised. Diseases harm you and getting sick is not good.
There are exceptions.
The key thing to remember is that the immune system does most of the damage to your body in most diseases; viruses and bacteria rarely kill you, since collateral damage from your immune system fighting them usually kills you first. There's a fine balance of how active the immune system ought to be. Parasites dampen your immune system. We co-evolved with parasites, and without them, your immune system is a little bit overactive (which may contribute to the massive recent rise of autoimmune diseases, allergies, etc.).
We know that modern diseases aren't helpful because at this point, we understand how they work. Modern viruses and bacteria -- which evolved with civilization -- are incredibly specific to humans. They "spoof" signals your body uses, for example to modulate the immune system's response. Historically, we'd have diseases which attacked many types of animals, and didn't do that; those were very different.
To give an analogy to defending a city, there's a difference between a broad attack and a targeted attack. Classic diseases are a bit like invaders at the city walls. Modern diseases are a little bit like spies and saboteurs.
And it has to be said that we do appear in fact to know with a good degree of certainty that at least one of the common cold viruses is very, very new in humans.
OC43 (a coronavirus) almost certainly arrived in humans in the 1890s (and is now thought to be what caused the deadly "Russian Flu" pandemic).
It isn't bunk to eat whole foods that were favored by our ancestors. You'd have a better diet than the large majority of people. We evolved to eat this stuff which is exactly why we stop getting diabetes and obesity when we stick to it.
I should have been more specific. The paleo diet specifically prohibits grain and dairy. My understanding was that this is an unscientific idea of "what our prehistoric ancestors ate", because homo sapiens is at least partially adapted to eating those foods. Is my understanding not correct?
I wouldn't go so far as to say unscientific, because as you say we are only partially adapted to it (e.g. lactose intolerance), and grains are an extremely easy source of calories which is problematic in a context of the obesity crisis and problematic when it's only simple carbohydrates being consumed by poor people such as potatoes or white rice (vitamin deficiencies). I don't expect epistemically sound and measured statements from a community around a diet that's become a social media fad, anyways.
I understand we can slip into the naturalistic fallacy easily, but at the same time I appreciate the line of reasoning as a first approximation because of how complicated the human body and nutrition is, and how messed up our public health situation is thanks to the modern diet. Even though I acknowledge this situation is attributable to processed foods and sugars, and not to whole grain consumption which I think is fine/good for most people, it is still the delta between modernity and how our bodies evolved that is the culprit.
Let's put it this way. The Paleo community is probably totally wrong about whole grains, but right about a lot of things.
I've read the book. That chapter talks about what kind of environment initially "trains" the immune system. It does not say anything about viruses such as the ones that common cold being ineffective in doing the same. Please be careful when extrapolating from what's written in a pop science book.
The common cold is a low level respiratory infection caused by a known suite of virus candidates. If we made ourselves permanently immune to those without going through the mucus and sore throat part there would be no negative consequences.
The common cold is interesting in that it's not just one virus, but a moving target of hundreds. I've always wondered if it's their diversity actually prevents any one potentially lethal strain from becoming dominant.
generic flu and common cold vaccine vaccines would be absolutely fantastic for any parent whose child attends any kind of public education (kindergarten is a cold- and flu-propagation device).
I found no details about how the treatment uses HIV. If it is used, it is used to modify the patient's T cells in the lab. So HIV is not curing leukemia, but it is used to prepare T cells which cure leukemia.
This brings up a funny memory. I had this idea in 4th grade when I learned about HIV but not how it was often acquired. Science teacher horrified at the suggestion of how to cure child Leukemia.
Totally tangential, but this was a shocking sentence from that post...
> plancentas are so valuable that physicians - especially in Europe - sometimes prefer to take them for themselves to sell to cosmetics research for ~$50k
I wonder if there's a hybrid approach where you could share the placenta/umbilical cord w/other companies and get free storage.
You can donate cord blood for free to a public bank. Obviously you're not guaranteed that it won't be used by someone else before a sibling potentially needs it, but the chances of it being useful to your own family are almost zero anyway -- not exactly zero, but if you were making a list of the ways to best increase your life expectancy given $5k to spend, I doubt it would even make the top 1,000 options in terms of expected ROI.
I would actually argue that the chances of using it are actually much higher & it would make the top 1000 options in terms of expected ROI. Using type 1 diabetes as an example:
By age 18, approximately 1/300 people in the US develop type 1 diabetes
and that's just for diabetes. Consider the chances and corresponding research around cerebral palsy, hair loss, heart failure, liver disease, cancers, and more that stem cells - and specifically cord blood stem cells - have been successfully used for.
There was some research that indicated stem cells can be made from skin cells. Is there a chance this field will eventually catch up by the time stem cell therapies become more widely accesssible?
I don't think of "exercise" as a "5k" investment. Sure you could buy 5k worth of equipment, but how much more does that improve your health over calisthenics and a set of dumbbells?
Yes, education I'd say is in the top 10 or 50. But how can you possibly fill out the top 1000 without including umbilical cord stem cells?
(1) an 'NHS hospital in the UK' is not 'doctors in the EU', (2) it is universally condemned, (3) the beneficiary is apparently a US company (4) Consent was obtained but for different reasons (medical research), which put the hospital in hot water, as it should. (5) the amount is nowhere near the one claimed. (6) it is a donation, clearly still a quid-pro-quo. (7) this is outrageous enough that it made the newspaper. (8) 2008.
To use this in a commercial setting, to pretend it's an ongoing and common thing and that doctors in the EU profit from this is absolutely disgusting. Besides that I sincerely hope that that hospital had the book thrown at it, and suspect the company is at fault and not the hospital.
Accusations like that against doctors should not be made lightly, especially not for your own personal financial gain.
Finally: placentas are used for good research, they are a rich source of stem cells and hard to come by proteins, some hospitals do collect them for this purpose (as the hospital in the article pretended to do), and by making the argument that they are mostly used for cosmetics manufacture it harms the main reason hospitals will pass them on: to help with various medical research programs, which the company is essentially in competition with.
It's a straight up case of FUD with unsupported accusations of insane profits on unethical behavior against a group of people that have taken a pretty expensive oath as well as operating under strict regulations.
edit: some more research later:
It appears the hospital was unaware of what the company did:
" She added: "We have spoken to Sigma-Aldrich already and asked them to revise the consent form so it is more explicit. We partook in the scheme on the understanding that the placentas would be used for medical research."
She added mothers were given information about the process during ante-natal care and placentas were only ever taken with their consent.
She added: "We do receive a donation for this service, but we are not paid for it as such. The distinction is that even if we didn't receive a donation, we would still offer mothers the opportunity to donate their placentas for research, rather than have them incinerated."
Sigma-Aldrich, which has a facility in Fancy Road, Poole, denied its human placental by-products are used in the manufacture of any cosmetic products, but a spokesman admitted they may be used in their development and testing. "
Based on the information available the hospital made yet another questionable call here, revising the consent form isn't the solution, the solution is to stop working with this company because it clearly can't be trusted.
> Dr. Kristal pointed out, with slight hesitancy, that research hospitals could have a financial motive to keeping women's placentas given that "a lot of bigger hospitals have—or, at least, had—contracts with pharmaceutical and cosmetic houses to sell the placentas." The hospitals I spoke with denied this allegation, but it's perhaps worth noting that Baylor Hospitals—which is notorious for refusing to let moms take home their placentas—is also part of a national study to evaluate the efficacy of using cells derived from human placenta to treat Crohn's disease.
> One of the most widely used products for lower extremity wounds, Lantis said, is EpiFix, which is made by MiMedx. It is synthesized from "dehydrated human amnion/chorion membrane" -- placental material -- according to the company's website. In 2013, the FDA warned the company about marketing the product without approval, which the firm eventually obtained.
> If women knew more about the money, power, and scandal behind their donations, they might see donation differently, Turner said.
> "What if women were given the full account, that some biobank is going to acquire it, process it, assign it value, and then it's going to be marked up and sold again," Turner said. "Some women might think twice."
These are just in the first page of google results. It's shady but not exactly illegal (apparently) to ask mothers on the operating table to sign off on "donating" their placentas.
If such donations are regularly solicited, I don't find it that surprising that hospitals profit off of them one way or another. I do agree the CEO should back up her claims.
A doula told me that she saw this happen in the US once too. It's not legal, but I think there are legal loopholes around it. Another OBGYN told me it's more common in Europe
Unrelated but while we're on this topic, people should also remember Alan Greene's gold talk [0] about cutting the umbilical-cord and how (not doing) it can save so many kids quite literally "for free".I don't want to sound insensitive here, and i somewhat smell that stem-cell treatment(s) will somewhat be used for "anti-aging" therapeutics for the well-off higher-class if they're not already;But before that we should still keep in mind that we can help kids or those people in need with serious conditions.I see people act disgusted by it, eat it, or other crazy sh1t, but it has an evolutionary role we cannot gloss over.
glad to see some advancement in the gene therapy space. I think once people move past gene editing as "playing god", we will be able to get rid of advanced genetic diseases entirely (ie, muscular dystrophy) and edit our genes to be naturally resistant to todays and future diseases.
Also I hope gene therapy becomes democratized. It shouldn't be limited to big Rx developing these solutions.
I don't understand the argument against "playing god." Frankly, almost everything we do is playing god in some way, shape, or form. There is no way the planet could feed this many humans, without humans actively shaping and altering almost every facet of the ecosystem. Humans have already played god and will continue to do so in ways that were unthinkable in years past.
Genetics ftw. I firmly believe that consumer genetic tests, self-order lab tests, and overseas pharmacies will disrupt the corrupt healthcare system because they empower patients to treat themselves instead of resorting to conventional medicine where Big Pharma, insurance companies, and overpaid doctors gatekeep access to treatment.
For 100 dollars, you can obtain a full copy of your genome from a service like 23andMe and run it across a parsing tool such as https://www.codegen.eu to find genetic predispositions to all kinds of medical maladies. I found numerous bad SNPs in my genetic data that I correlated to confirmed family cases. I also discovered genes I have that reduce my response to certain pharmaceuticals or cause harmful reactions. Why take a risky shotgun approach when you can know in advance if something will or will not work for you?
It's literally like looking into a crystal ball of ailments that are plaguing you now or in the future. Forget about bouncing around from specialist to specialist for years and years; read your genome to get the answers you seek today. It's your source code.
This. The days of going to a hospital where you might acquire a nosocomial infection (ie, "super bugs" like MRSA, VRSA) will be long gone. We thought robotic automation might be the job killer for healthcare, but it's really democratized gene therapies.
"I think once people move past gene editing as "playing god", we will be able to get rid of advanced genetic diseases entirely (ie, muscular dystrophy) and edit our genes to be naturally resistant to todays and future diseases."
I think the "go fast and break things" mindset is scarier here than the debates about whether or not we have the right to play God.
I used to think this way but honestly, given how poorly nature does in terms of creating genetic material for new people, I've come to believe that we have a pretty big margin for error. The harm done by a gung-ho attitude toward gene editing has to be compared to the harm done by allowing the "natural" course of events to continue.
And nature has a long, clumsy, cruel tradition of killing literally everyone in various unpleasant ways, usually before their time. There is a tradeoff and "optimize for making sure we never ever ever repeat the thalidomide fiasco again" is not the best strategy to take.
"Meanwhile, journalists and federal health officials discovered several troubling lapses in the conduct of the study. For example, the researchers had earlier told the FDA they would tighten up the trial’s eligibility criteria, but they never followed through. When two patients suffered serious side effects, the scientists did not immediately inform the agency or put the study on hold as required. It turned out Jesse’s pretrial test results showed he had poor liver function, indicating he arguably shouldn’t have received the OTC gene injection.
But perhaps most damning were failures in the informed-consent process. Researchers hadn’t told Jesse about the earlier patients’ side effects or about two lab monkeys killed by high doses of adenoviruses. If he had been properly briefed about these previous issues, he might have dropped out of the study and still be alive today. Wilson was also accused of a conflict of interest: he had a stake in the company that owned the gene-transfer technology and stood to benefit if the trial succeeded.
...
The investigations drew attention to wider problems in oversight of gene-therapy experiments and human research generally. For example, the FDA and NIH revealed that 691 volunteers in gene-therapy experiments had either died or fallen ill in the seven years before Jesse’s death; only 39 of these incidents had been reported promptly as required. The agencies tightened monitoring of trials, increased inspections, and created a new system for reporting serious side effects, among other steps. Penn responded to the crisis by strengthening the institutional review boards that oversee its trials, putting in new protections for patients, and prohibiting researchers from having financial stakes in their trials."
Look up the cheap antigen tests that were 80 percent effective and blocked by regulators in early 2020. How many people have needlessly and silently died because of excessive precautions and red tape? The opportunity cost deaths are hidden and unseen, but they're real all the same.
Yes, a few times if I recall correctly. It's just not particularly accessible treatment (for HIV) as it requires the complete destruction of the host immune system and essentially 're-growing' a new one - hence this is usually a pleasant side-effect of treating certain cancers.
IIRC that procedure has something like a 50/50 chance of not working and leaving the patient dead with no immune system. It's a hail Marry treatment for cancers that are about to kill you anyway. Really cool that using the right donor can cure HIV, but not useful as a general treatment at any cost due to the high failure rate.
The CCR5 probably codes for a chemokine, these are a group of proteins which help white blood cells home on to specific locations, I would guess you may get some sort of immune deficiency if a chemokine protein was mutated enough
There may be downsides for carriers of the mutation when fighting infections by other viruses. But nothing completely obvious (unlike, say, in sickle cell anemia).
Will we ever get back to consequence freedom? "That" is a particularly successful reproduction strategy for viruses and bacteria to spread around. It feels like we'd just be waiting for the next epidemic.
honestly I should rephrase because I don't think we've ever had it, maybe in some isolated societies pre-colonialism, but now we've never been closer even though sex-education is currently based on so much fear.
I'm not sure it's fear, but rather caution and awareness of consequences. Things can spiral out of control fairly quickly if caution falls out of fashion. Two major precautions prevent the vast, vast majority of disease and pregnancy in virtually all situations.
Routine testing fixes most of issues too, many people just have a stigma of testing at all, let alone as often as they should. At this point, some forms of sex workers that have more partners are cleaner than the general population, just because they test often and fix things early. Which is worth saying because it is counterintuitive to what many people think will happen, linking promiscuity to negative health outcome (because they themselves don't test and just accumulate probabilities of infections). the line isn't preventing all exposure to disease, its fixing them when exposure occurs.
and yes, combining both strategies of protection alongside testing + early fixing reduces the negative consequence even more even when not preventing absolute exposure to disease.
As a person with the polymorphism I'm generally much less careful of protecting myself from other STDs since I know about it, so it increases my chances of aquiring another one.
One of the big issues with this approach is that you have to effectively kill the person's immune system with very high dose chemo before introducing the resistant bone marrow cells. While BM transplantation is routinely performed, there are instances where the transplant is not successful (for reasons other than HLA match, etc), with the failure of bone marrow engraftment being typically fatal. Given this, and that the current anti-retroviral drugs generally work pretty well (i.e. those taking the medication enjoy a reduced risk of mortality), this curative treatment might not be pursued.
It's worked in the past at least twice, but then instead of well-controlled HIV you have to deal with Graft vs Host disease which is much more problematic.
Mel Gibson took his aging father to an america doctor in panama who harvests umbilical stem cells and it pretty much gave him a new lease on life. They also help with hard to heal injuries
Ever wonder why a miracle doctor from America has to work in Panama? Yeah, it's because he spends a lot of time doing things that don't have much (any) evidence to back them up.
It doesn’t make it any less interesting. His entire show isn’t literally lies. But of course, everything should be taken with a heavy grain of salt. It’s just as fallacious to assume every single thing is false simply because you don’t like or trust a podcast host. It’s hit or miss in my experience.
This is amazing news. My only hope is that the recipient has been thoroughly vetted with a complete background check and panel interview to determine if they are worthy of such a cure[0].
I actually don't get the outrage on this, anyone willing to undergo an experimental procedure should be held as a hero.
If this country didn't have an absolutely horrible criminal justice system, I would love something where inmates can sign up for experimental procedures in exchange for a full pardon. But knowing America, this was just encourage prosecutors to push inmates to get unnecessary procedures.
Downvoting - I don't support the idea that the criminal justice system should extend to the opportunity to be cured from certain diseases, particularly so long after the fact. It's a dangerous precedent.
Well we already have (a carefully undocumented number of) bloodboys. And organ banks full of political prisoners. The next obvious step is to grind up babies into health-smoothy.
I assume that you are referring to Republicans and medical procedures related to abortion. If so, I don't think there is anything with regards to this procedure which requires an umbilical cord from an aborted fetus. Additionally, most pro-life/anti-abortion groups seem to be highly supportive of umbilical cord treatments. Searching online turned up many sites like this: https://www.prolifewi.org/cord-blood
(stem cell) Transplants, which are risky and costly, are unlikely to be an option for HIV patients other than those who need them for treatment for diseases like cancer,
Made me wonder if fasting might help. A quick search found anecdotal support for "definite maybe".
The reason that person's viral load went from 40k to 14k is because that's how HIV infection works. It would have done so whether he was fasting or eating 3 cheeseburgers a day. [0]
It's an unreasonable standard though, one to which I seem to frequently be held for bullshit reasons that appear to me to boil down to "We refuse to believe that you know anything about health topics and also require you in specific to meet a higher standard than other posters just making conversation."
It's a means to gatekeep me out of medical discussion because people don't like the idea that I'm getting healthier when doctors say that cannot be done and rather than engage in meaningful discussion, I fairly often receive a dismissive pile on of replies in a way that I do not believe is the norm for HN.
I don't have to defend it or prove a claim. I didn't make a claim. I stated as clearly as I know how that it made me wonder x and so I did a search.
This should not be drama of any sort. Other people routinely make conversation on medical topics and aren't given a hard time for it. Other people in this discussion are making conversation about donating cord blood to research.
No one is required to be a medical professional to participate in medical discussion here. No one is required to defend their interest in such subjects.
Except apparently me. Probably because of my personal situation and people having some issue with that.
I think that's an incredibly uncharitable take from this thread. Almost none of the people here are medical professionals, nor do I think most people here are familiar enough with usernames to target you in particular. You opinion is just as valuable as any others here.
If anything, at least in this case I can see that providing a Quora page as "supporting link" works against you - because of the low quality of most Quora content. You mused about a possibility, and the comment engaged with your point at face value with a very reasonable response. They did not ask you to meet a "higher standard" or provide evidence for your idea. You escalated the discussion from there by suggesting that the Quora page is "supporting" - which it really isn't. Making conversation is fine, but if you're going to try to back up your ideas with links, its natural that people will engage with the validity of the source. If you'd linked to a publication, for example, they'd have to engage with the science of it. In this case since its Quora, what's there to engage with? Anecdotes tell us nothing - perhaps 99.95% of people who tried it had no improvement and just didn't talk about it. This is not gatekeeping, nor are you being targeted, at least in this specific case. If you'd shared your own experience, that would give us something to discuss. For example, my ex is living with HIV, and it was a long road of treatments before he was out of the woods. His health was pretty poor when he was first diagnosed, and he was unresponsive to the first line of antiretrovirals (his particular strain was resistant) and it was upto me to manage his health on a daily basis. I can't speak to your specific personal situation that you speak of, but I can appreciate that sharing them on a forum doesn't offer us any extra cred with online strangers.
It's not uncharitable. It's highly qualified and based on more than twelve years of experience posting here.
I know essentially nothing about HIV. I know a little something about using fasting to successfully treat an incurable condition.
I didn't share that because it is routinely ridiculous levels of drama for me to comment on that and some people here absolutely remember me and target me.
I have some mental models for why I think fasting is beneficial. I didn't share those because those amount to "personal opinion" and I can't back them up.
I am happy to hear medical reasons why fasting is unlikely to work for HIV. That's mostly not the substance of the feedback I got initially.
I recognize your username and I think we had small, non-antagonistic interactions here where I basically (IIRC) asked you to elaborate on your condition.
I want to say that people who respond in the way you're mentioning are very likely a minority. A lot of people will read your comments and reply nothing at all. That's probably most of us, and therefore, any given comment's largest audience. That would have been me, had I not decided to comment this a little after I read your comment.
Not saying you're imagining it or overreacting, just trying to call attention to the fact that commenters on any topic are outnumbered by those who are reading and don't react. For whatever that is worth to you. Perhaps not much. I suspect it may be helpful perspective for many of us.
I'm really sorry that you have been the victim of such forum drama.
I also agree with you that people on this forum are on balance likely to dismiss non-mainstream medical approaches. If you are open minded about these and want to discuss them without prejudice, you'll often be met with responses that may be snarky or unfairly dismissive. That's the unfair reality of holding non-mainstream ideas. By default, they are off-piste, niche, etc...
However, I didn't see anything like that in any of the responses here. A very valid point was raised that you support your proposition (ie that HIV might be helped by fasting) with a Quora link. People who are not closed to the idea will find that the link just contains some anecdotal information which at best can confirm sub-conscious pre-concieved biases, but not be a robust argument.
Worse, it plays into the hand of those who are outright dismissive because you served them a perfect strawman to attack.
Ultimately, with any discussion forum you have to consider the audience. People don't owe you anything and particularly a forum like this where things are supposed to be debated based on merit, the bar to debate claims is relatively high.
All these considered, it would've been better to simply ignore the quora link, or at least strongly annotate it saying it is just anecdotal and should not be taken as supporting evidence.
This resonates hard. I know we're deep in the meta weeds here, but I find this constant demand for sources (and the always-accompanying derail about the quality of those provided) to be one of the worst issues about this site.
HN is not an academic paper, a Wikipedia article, a matter of journalism, a speech&debate exhibition or anything other than an informal discussion on the internet. In such discussions, people are allowed to quote from memory and personal experience, speculate, and occasionally be wrong... and I find the pressure to not do this to be not just a little disrespectful and dehumanizing. If people want all comments cited to ACM standards, there won't be any comments.
Totally agree with you with the gatekeeping. This is an informal conversation, and you’re just a random person from the internet. There’s no standard you must be held to, and people shouldn’t take what you say to be some statement of empirical fact.
Let's posit that I'm completely batshit insane and deluded and imagining that I have a genetic disorder and imagining that I'm getting better when doctors say that cannot be done. Let's assume the critics and haters are correct in that regard.
It has zero bearing on whether or not fasting would help with HIV. Even if you sincerely believe that I'm completely nuts, you could have a constructive good faith discussion with me about the medical details of how HIV works and whether or not fasting has any reasonable hope of being useful treatment for that specific condition.
And if I were nuts, talking to me about exactly how HIV works without being ugly and dismissive might make me less crazy and help find my way back from insanity to some kind of healthy relationship to reality whereas the kind of engagement I all too often get on medical topics is crazy making.
