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raka

Any update by Keith Jerome page on the research? or do we know when we can expect next update on his research?

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IAmDesperate

Everyone, do you believe that Keith Jerome's gene therapy enter human trial next year? Maybe the middle of next year? I know he still needs to do the toxic and IND submission. Btw how long does IND submission take? I just wanna know your opinion, no arguing please.

3 hours ago, MiLoBeng said:

Probably next year?

I hope it could be the end of this year :(

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Cas9

Human trials starting next year?  Not even close. It will be several years.

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StayingUpbeat
On 6/20/2019 at 4:44 PM, Franky26 said:

i emailed bill gates foundation and this is was there response 

 

Thank you for contacting the Bill & Melinda Gates Foundation.

Although we appreciate your commitment to this cause, unfortunately, we are unable to fund your efforts. The foundation makes grants to organizations directly rather than through individual fundraising activities.

As you may already know, the foundation’s work stems from our belief that all lives have equal value. We think all people deserve the chance to live healthy, productive lives. In developing countries, we focus on improving people’s health and giving them the chance to lift themselves out of hunger and extreme poverty. In the United States, we seek to ensure that all people—especially those with the fewest resources—have access to the opportunities they need to succeed in school and life.

For more information about the foundation, please visit www.gatesfoundation.org.

We wish you success in your efforts.

Sincerely,

Bill & Melinda Gates Foundation
www.gatesfoundation.org

It should be noted that the Gates foundation was part of a venture capital group that gave Genocea $30 million in support of their vaccine development efforts in the period when their lead candidate was an HSV-2 therapeutic vaccine (GEN-003): https://xconomy.com/boston/2012/10/10/genocea-snags-30m-from-gates-foundation-vcs-for-new-vaccines/

They have also provided 30 million dollars to the University of Washington's HSV efforts.  This time specifically on research into whether suppressing HSV results in a reduction in HIV transmission: https://honeycomb.click/topic/77503-donations-to-fred-hutch-center/page/21/?tab=comments#comment-493474 

Far from inactive in HSV research they provide significant funding in the context of reducing HIV transmission.  It's a well established fact that genital HSV greatly increases the probably contracting HIV from an infected partner.

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MiLoBeng
8 hours ago, IAmDesperate said:

Everyone, do you believe that Keith Jerome's gene therapy enter human trial next year? Maybe the middle of next year? I know he still needs to do the toxic and IND submission. Btw how long does IND submission take? I just wanna know your opinion, no arguing please.

I think they'll enter human trial by 2023 or later but due to their success on achieving 90% elimination rate in just 2yrs. Who knows and it might happen sooner than you think. Cheers

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Freefalling87

So I noticed on Facebook they offer fundraisers to organizations of your choosing for birthdays. I tried to enter in Keith Jerome but didn't see him listed as an option, but Fred Hutchinson in general was listed. @MikeHerp do you think you could ask your contact to see how she could get Facebook to list them? 

Also, would you mind seeing if she could get this fundraiser listed on smile.amazon.com donations? I'd like to try it out for my birthday down the road. Hopefully they state it in a way that isn't so stigmatized (make it not say genital herpes but hsv in general with a list whether it is cold sores, ocular, genital, how it affects babies, etc.). That way, maybe more people would be more opt to share it on their pages.  😀

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LightafterDarkness

Looks like the fundraiser just passed the $25k mark. At some point this money starts to become really meaningful (e.g., $50k may pay for one additional person to work in the lab etc). Also its a signal from the community that there is alot of interest in a cure via gene therapy.

http://engage.fredhutch.org/site/TR?px=1709211&fr_id=1574&pg=personal

 

 

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iFdUp

To all the people estimating 2023 for human trials of what Dr Jerome is working on, we really have to see. 

Depending on what is happening right now about that 90% delivery to the SCG and the 50% to TG

As soon as it is considered an effective cure in mice it will move to a greater animal. 

The time to determine results of the mice testing was at most around 45~ days per test grouping. It may be longer for greater animals but I doubt it would be much longer. 

If the same level of efficacy is found in the greater animals it may progress to clinic much faster. It may even be granted access to certain people with rare cases of lethal herpes, anything is possible. 

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Newone2
On 7/19/2019 at 4:41 AM, iFdUp said:

To all the people estimating 2023 for human trials of what Dr Jerome is working on, we really have to see. 

Depending on what is happening right now about that 90% delivery to the SCG and the 50% to TG

As soon as it is considered an effective cure in mice it will move to a greater animal. 

The time to determine results of the mice testing was at most around 45~ days per test grouping. It may be longer for greater animals but I doubt it would be much longer. 

If the same level of efficacy is found in the greater animals it may progress to clinic much faster. It may even be granted access to certain people with rare cases of lethal herpes, anything is possible. 

I wish they would just run tests in humans already. I’ll happily sign on the dotted lines even if there is a chance of death. I’d rather be dead then live the rest of my life like this anyway. 

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iFdUp
Posted (edited)
5 hours ago, Newone2 said:

I wish they would just run tests in humans already. I’ll happily sign on the dotted lines even if there is a chance of death. I’d rather be dead then live the rest of my life like this anyway. 

I probably would too, honestly. Fuck it, right? 

My BEST CASE scenario for us (with a small chance of this happening) would be if Dr Jeromes research proves to be as safe (not causing cell toxicity or off target effects) as it has shown in animal testing, in greater animals. 

That would make it far more likely the the treatment to be approved in case of encephalitis, perhaps. It is hard to say what other application it might be approved for use in before full clinical trials have occurred. 

Regardless, I have a strange feeling we will see a cure at about the same time as we see a vaccine. My 2 cents.

Edited by iFdUp

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Newone2
3 hours ago, iFdUp said:

I probably would too, honestly. Fuck it, right? 

My BEST CASE scenario for us (with a small chance of this happening) would be if Dr Jeromes research proves to be as safe (not causing cell toxicity or off target effects) as it has shown in animal testing, in greater animals. 

That would make it far more likely the the treatment to be approved in case of encephalitis, perhaps. It is hard to say what other application it might be approved for use in before full clinical trials have occurred. 

Regardless, I have a strange feeling we will see a cure at about the same time as we see a vaccine. My 2 cents.

I think you are right. I’m just want this nightmare to be over already. The only time I truly feel at peace is when I’m asleep. I wish I could just be put into a medically induced coma and be woken up when the cure comes out.

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Malcolm

I would try it even if there was a 25% chance of death. That's how bad the symptoms have been for me.

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T9000
On 7/28/2019 at 2:45 PM, iFdUp said:

Regardless, I have a strange feeling we will see a cure at about the same time as we see a vaccine. My 2 cents.

This is my hunch as well for some reason. However part of me wonders how the hell something like gene editing for herpes will even be allowed to be tested in the United States, unfortunately. Same thing with a live vaccine. It's sad that we've come to this point. If dr. Friedman's vaccine turns out to be effective enough for mass market then I would probably put money on that being available first. 

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iFdUp
6 hours ago, T9000 said:

This is my hunch as well for some reason. However part of me wonders how the hell something like gene editing for herpes will even be allowed to be tested in the United States, unfortunately. Same thing with a live vaccine. It's sad that we've come to this point. If dr. Friedman's vaccine turns out to be effective enough for mass market then I would probably put money on that being available first. 

We've grown very coddled by our own society. I think the current encouragement from newer blood in places like the FDA will see these changes accepted and progressed. I really do believe that.

Kinda funny.. but I had a little conversation with Rich Mancusco on his youtube comments. He was angry with Trump about a lack of medical progression after his election. 

I commented about Scott Gottleib and reminded Rich that he was appointed by Trump. 

Politics aside, I don't believe Trump would put a pansy in charge of the FDA and Scotts track record backs that up. 

I believe if what is currently being tested for that form of genetic blindness (CRISPR is being used to create the medicine) proves to be safe, then it should make the reception of different CRISPR/DNA editing techniques better.

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T9000
On 7/30/2019 at 9:53 PM, iFdUp said:

We've grown very coddled by our own society. I think the current encouragement from newer blood in places like the FDA will see these changes accepted and progressed. I really do believe that.

Kinda funny.. but I had a little conversation with Rich Mancusco on his youtube comments. He was angry with Trump about a lack of medical progression after his election. 

I commented about Scott Gottleib and reminded Rich that he was appointed by Trump. 

Politics aside, I don't believe Trump would put a pansy in charge of the FDA and Scotts track record backs that up. 

I believe if what is currently being tested for that form of genetic blindness (CRISPR is being used to create the medicine) proves to be safe, then it should make the reception of different CRISPR/DNA editing techniques better.

My assessment has always been that trump hasn't done much to curb the FDA, however I don't think there's much the president can do besides appoint commissioners, and Gottleib was probably a good choice. Gottlieb stepped down though, and the acting commissioner seems to share his opinions on streamlining and redesigning clinical trials, which is good. It seems like greenlighting crispr trials was the one major positive of his tenure. 

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iFdUp
Posted (edited)
3 minutes ago, T9000 said:

My assessment has always been that trump hasn't done much to curb the FDA, however I don't think there's much the president can do besides appoint commissioners, and Gottleib was probably a good choice. Gottlieb stepped down though, and the acting commissioner seems to share his opinions on streamlining and redesigning clinical trials, which is good. It seems like greenlighting crispr trials was the one major positive of his tenure. 

I didn't realize that Gottleib had stepped down in his role. 

Recently Trump was quoted in saying at one of his rallies that if he is re-elected, he will dedicate more funding to curing AIDS. 

It wouldn't surprise me if Trump had an interest in seeing cures to AIDS and Herpes, as well as other STI/STD's. Given that he has ties in the entertainment industry he probably knows powerful people with AIDS, that would make it in his personal interest. 

Somehow I also feel like it is possible that Trump himself has Herpes. So there may be Herpes in that "and others". He also says in his typically vague way "I see what they are working on, they show me." maybe referring to advisors filling him in on grant information. 

 

 

Edited by iFdUp

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T9000
On 8/5/2019 at 12:33 AM, iFdUp said:

I didn't realize that Gottleib had stepped down in his role. 

Recently Trump was quoted in saying at one of his rallies that if he is re-elected, he will dedicate more funding to curing AIDS. 

It wouldn't surprise me if Trump had an interest in seeing cures to AIDS and Herpes, as well as other STI/STD's. Given that he has ties in the entertainment industry he probably knows powerful people with AIDS, that would make it in his personal interest. 

Somehow I also feel like it is possible that Trump himself has Herpes. So there may be Herpes in that "and others". He also says in his typically vague way "I see what they are working on, they show me." maybe referring to advisors filling him in on grant information. 

 

 

Lol I would definitely put money on him having some form of herpes. With that being said, he strikes as the kind of guy who just kind of ignores it or rationalizes it away. I feel like if he does have it then he probably wouldn't want people to know about it, so idk about him trying to put money towards it. The plan his administration introduced to use prep to more or less eliminate HIV was good, and was sort of the logical next step following PrEP's creation. However I don't know how I feel about more money being pumped into aids cure research as it relates to herpes. It definitely needs to be cured, but it's frustrating because while aids research may have advanced the field of virology to some degree, I think it's also likely that it has held back other research simply by virtue of it sucking up all the available resources. Similar to how breast research cancer sucks up a disproportionate amount of cancer research money. It seems like at this point there should be at least be a lot more known about herpes simplex

And yes, Gottleib stepped down. I think he's going to Pfizer to serve on their board.

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iFdUp
5 hours ago, T9000 said:

Lol I would definitely put money on him having some form of herpes. With that being said, he strikes as the kind of guy who just kind of ignores it or rationalizes it away. I feel like if he does have it then he probably wouldn't want people to know about it, so idk about him trying to put money towards it. The plan his administration introduced to use prep to more or less eliminate HIV was good, and was sort of the logical next step following PrEP's creation. However I don't know how I feel about more money being pumped into aids cure research as it relates to herpes. It definitely needs to be cured, but it's frustrating because while aids research may have advanced the field of virology to some degree, I think it's also likely that it has held back other research simply by virtue of it sucking up all the available resources. Similar to how breast research cancer sucks up a disproportionate amount of cancer research money. It seems like at this point there should be at least be a lot more known about herpes simplex

And yes, Gottleib stepped down. I think he's going to Pfizer to serve on their board.

Imagine that. 

Despite him stepping down from the DJT Admin. he picked up another world class gig right afterward. He really did do well, if that is the case. 

I think Cancer is in a league of its own, in terms of funding. There is basically a cancer for everything, isn't there? Cancer can be anywhere as far as I know. 

You're right about breast cancer taking a huge amount of funding, though. I think that issue strikes at the heart. The breast is a very defining aspect of a woman and it is a very personal type of cancer for someone to have, I imagine. 

I can only imagine the pain that sort of disease might cause, and the results of it can also be very disfiguring. I see why the amount of support and money that has gone towards breast cancer is so high, but we haven't seen much returns from it. 

Politics aside once more, I believe Trump. I think he is privy to the information that is truly industry leading and ground breaking. He has good people keeping him informed of advances in medicine and various fields. It only strengthens his position for re-election.

I might also add that he was the first Pres. to openly support gay rights, even during his election run. Somehow that adds to his credibility and willingness to see through his promise regarding HIV/AIDS. He really does seem like a man of the people. 

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hk81

Hi
I've been following the development of the research of Keith Jerome since a while.
As far as I know, CRISP and all the gene editing techniques are quite expensive (in the range of hundreds of thousand of dollars), which poses the question about who will pay these expenses when the therapies will be available. Health insurances?

What about the cost of the therapy of Keith Jerome? Is there an idea of how much it could cost? Since herpes hardly is causing death, I believe that health insurances will not cover these costs, as alternative cheaper therapies are available. So the cost should be covered by the patient. I doubt that people would pay prices higher than 100k dollars (that's the savings of 5 - 10 years of work!), which could make this research less attractive to pharmaceutical industries, as it would be accessible only to a few people.

What is your opinion?

Did they disclose any information on this? Or are they only collecting money for research without making clear how this therapy will be accessible to people?

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LightafterDarkness

 For the last 3 years the Trump Administration has pushed for budgets with less funding for medical and scientific research and more funding for the US military so its worth calling that out in regards to hopes for the FDA etc. [note I dont want to discuss politics since I dont think this is the proper forum]:

https://www.cancerhealth.com/article/trumps-2020-budget-plan-slashes-national-cancer-institute

https://www.sciencemag.org/news/2019/03/trump-once-again-requests-deep-cuts-us-science-spending

https://www.washingtonpost.com/health/2019/03/11/trump-proposal-would-slash-total-cancer-funding-while-boosting-pediatric-research/?noredirect=on

 

@hk81 we are still - as a society - early in understanding the best cost structure for how something like gene therapy is going to be paid for (including any work from Dr. Jerome's lab that is still years out assuming success). Insurance will still be a big factor (its not going anywhere). As you rightly point out most people will not be able to afford many of these new therapies and so a new structure is needed. One thing to callout is that the first few gene therapies coming out are focused on very small patient populations and so the cost is high. With something like HSV - which millions have- the cost could be spread out thus reducing price. If you are interested in learning more I encourage you to google "paying for gene therapies." You will find lots and lots of thoughts about this topic.

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hk81

@LightafterDarknessThe fact that the cost could be spread out depends on which percentage of the cost is due to fabrication/material and which to research.
Furthermore if I'd have to pay 100k dollars, I should have a warranty that the therapy will work 100%, otherwise I would be short on money to try any other option or further development. I believe that many people would think the same.

Yes, I have read about the necessity of finding new methods for supporting the payment of gene editing therapies. And clearly the health insurances cannot cover whatever every people want, or they'll go bankrupt as well.

Of course if we talk about a few decades, things may change.

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Quest
On 8/7/2019 at 4:23 PM, LightafterDarkness said:

 For the last 3 years the Trump Administration has pushed for budgets with less funding for medical and scientific research and more funding for the US military so its worth calling that out in regards to hopes for the FDA etc. [note I dont want to discuss politics since I dont think this is the proper forum]:

https://www.cancerhealth.com/article/trumps-2020-budget-plan-slashes-national-cancer-institute

https://www.sciencemag.org/news/2019/03/trump-once-again-requests-deep-cuts-us-science-spending

https://www.washingtonpost.com/health/2019/03/11/trump-proposal-would-slash-total-cancer-funding-while-boosting-pediatric-research/?noredirect=on

 

@hk81 we are still - as a society - early in understanding the best cost structure for how something like gene therapy is going to be paid for (including any work from Dr. Jerome's lab that is still years out assuming success). Insurance will still be a big factor (its not going anywhere). As you rightly point out most people will not be able to afford many of these new therapies and so a new structure is needed. One thing to callout is that the first few gene therapies coming out are focused on very small patient populations and so the cost is high. With something like HSV - which millions have- the cost could be spread out thus reducing price. If you are interested in learning more I encourage you to google "paying for gene therapies." You will find lots and lots of thoughts about this topic.

Just in the first article Trump takes millions away! Don't need to go further, Trump sucks!

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MikeHerp
Posted (edited)
On 8/8/2019 at 6:54 AM, hk81 said:

Hi
I've been following the development of the research of Keith Jerome since a while.
As far as I know, CRISP and all the gene editing techniques are quite expensive (in the range of hundreds of thousand of dollars), which poses the question about who will pay these expenses when the therapies will be available. Health insurances?

What about the cost of the therapy of Keith Jerome? Is there an idea of how much it could cost? Since herpes hardly is causing death, I believe that health insurances will not cover these costs, as alternative cheaper therapies are available. So the cost should be covered by the patient. I doubt that people would pay prices higher than 100k dollars (that's the savings of 5 - 10 years of work!), which could make this research less attractive to pharmaceutical industries, as it would be accessible only to a few people.

What is your opinion?

Did they disclose any information on this? Or are they only collecting money for research without making clear how this therapy will be accessible to people?

My comments:

1.  CRISPR is NOT expensive at all.  It's so cheap and easy to do, you actually have biohackers doing it in their labs at home.  Anyone can potentialloy do it with some knowledge about science.  It can be done for a few thousand dollars.  A CRISPR HSV solution, wouldn't be very expensive.  It might be a few thousand USD, but I doubt it would be even that. Costs of testing could be considerable--running trials, which might even have to include genetic sequencing. But costs of genetic sequencing are also falling over time and they are now only a few thousand per person or even less.   Plus costs would fall over time.

2.  Keith Jerome's meganucleases are difficult to work with.  They take months to engineer correctly.  This is a known fact and it's their disadvantage relative to CRISPR.  So in principle, the costs of the research are significant.  The FHC experiments are funded with relatively modest NIH grants which are several hundred thousand USD per year, but there may be other sources of funding as well, including internal FHC funds etc.  Further, as animal trials expand, that will be increasingly costly as well.  No idea how much exactly, but it may be millions USD in the end.  The investment in time and resources is considerable, plus there would be costs of testing as noted above.  But coming back to the question of "how much would a cure with this cost?", there is a fairly optimistic hint about this from an interview with Jerome with Mens Health Mag from earlier this year (emphasis added).

Quote

“Because they’re smaller proteins” than CRISPR Cas-9, he explains, his meganucleases have an easier time working their way into target zones where they can find the virus and get rid of them, even if they have taken more effort to coax into a workable form. “Although they’re hard to make,” he stresses, “if you have a virus you’re going after, it’s worth the effort. If you’re making a therapeutic that you ultimately want to give to people, once you have it, you have it.” That means you don’t need CRISPR’s easy malleability.

You kind of have to read the lines, but the way I read it is that, the meganucleases are hard to engineer, but once you have figured out the ideal combination, then you can keep making it.  It's getting to that stage which is the hard part.  

What does it mean as far as costs of a commercial cure are concerned?  I can't say for sure, but it seems to imply that, the big costs will be the initial research costs, but once they have zeroed in on the most desirable protein and enzyme combinations of the meganucleases, they can then hopefully just keep making them again.  So again, it won't necessarily have to be hundreds of thousands USD.  If I had to guess, in the very worst case scenario, maybe tends of thousands USD.  But maybe $5k-$10k more likely.  Just a guess.  Costs would fall over time as well.

3.  Who will pay these expenses when the therapies will be available. Health insurances?

Yes, i'm certain health insurance would be a big contributor.  Before the research which linked HIV to HSV fairtly recently, I would have said, it's unclear.  But now that the link has been accepted, it's a no brainer for health insurance to help fund it.  Around half the people with HIV have it because they got HSV first and HIV is a path to endless decades of health insurance claims.  Health Insurance is BIG on reimbursing for treatments that are preventative.  In the US, insurance is even required to cover many preventative vaccines.  The principle here would be the same.  For any given person, getting herpes isn't likely to lead to HIV.  But statistically, around half people with HIV got it through having HSV.  It's a much bigger contributor to the AIDS epidemic than, for example, reuse of drug needles--a problem whcih has gotten a TON more attention than HSV until recently.  That is changing.

4. "Since herpes hardly is causing death, I believe that health insurances will not cover these costs,"

See my comments above.  The causative link to HIV is well accepted.  A number of studies have shown that around 40% to 60% of HI?V infections are as a result of HSVHSV is a major driver of the HIV epidemic.  Getting rid of it, would greatly decrease HIV prevalence and infections.  HIV is the big one.  But there are other problems, like ocular HSV that and neonatal HSV, that, aren't common, but still add to the disease burden.  Further research is being done on the Alzheimers connection as well as other possible issues. "HSV is largely harmless" is not really the mainstream view among serious researchers of it anymore.  

 

 

 

 

 

Edited by MikeHerp

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MikeHerp

BTW, somebody made a sizeable donation to the fund raiser today.  Around $2.5k.

Anyone know who it was?  

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    • alextheman
      You have to lower your stress.Stress is a big key.Me im trying to sleep more and lower my stress.Im trying to not worry about having herpes.I have it,and there is nothing i can do,So why stress myself about it?Im taking medicine to help suppress it.For me stress and sleep are my biggest factors.
    • nakedandafraid
      How long after you had sex with this woman did you exhibit symptoms? What makes you think she has herpes?
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    • WilsoInAus
      Hey @K1009 that all sounds a typical experience of transmission between partners. Please take heart, after the first few months, many people experience extremely few outbreaks of any with gHSV-1. Also you cannot feasibly give this back to your partner, you are now concordant sexually in terms of HSV and your immune systems will protect you from further infection.
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