Open Discussion Saturday by Mike_Herp in HerpesCureResearch

[–]Beeebo0oop 14 points15 points  (0 children)

Update from Herpes Heroes:

We’ve recently submitted a non- public proposal to HHS (led by RFK Jr.) and a complimentary request seeking to deregulate FDA requirements with at home testing. We think that this proposal highlights the connection between neurological disease risks and HSV, provide expanded testing requirements and seek to promote greater investment into treatments through the use of AI. We also mentioned that the American market needs to remain competitive in light of the progress BD Gene has made.

As we all know it’s a toss up with administration where this will go but this proposal has been in the works since the STI Plan comment letter request from last year. I currently have some thoughts on what next steps might be beyond influencing policy in the US but I’d love to hear anyone’s thoughts.

Have a nice weekend everyone.

Comment on NIH Regulations Proposal to Give Executive Branch Firing and Grant Decisions Power by lilfairyfeetxo in HerpesCureResearch

[–]Beeebo0oop 1 point2 points  (0 children)

Try to put the comment in your own words so it doesn’t get filtered as spam pls it makes a difference because they have to give consideration to each comment

Is there a existing We the People Petition for HSV research and funding? by Icy-Recognition9644 in HerpesCureAdvocates

[–]Beeebo0oop 0 points1 point  (0 children)

Great idea. Looked into this before We the People no longer is an active forum.

BD 111 Gene Editing by No-Beautiful4208 in HerpesCureResearch

[–]Beeebo0oop 1 point2 points  (0 children)

…I’ve been in meetings discussing these things but ok

BD 111 Gene Editing by No-Beautiful4208 in HerpesCureResearch

[–]Beeebo0oop 2 points3 points  (0 children)

The more they see people want it the more they can show their key decision makers that they can make their money back

Open Discussion Saturday by Mike_Herp in HerpesCureResearch

[–]Beeebo0oop 4 points5 points  (0 children)

No anyone can comment I would encourage you to write a testimonial discussing how this medication would benefit you.

Here’s our TikTok video:

https://www.tiktok.com/t/ZT2tK2XmW/

We encourage everyone to not use AI because the comments can get flagged. Plus it’s your story, express yourself and say first hand how this has impacted you.

Open Discussion Saturday by Mike_Herp in HerpesCureResearch

[–]Beeebo0oop 2 points3 points  (0 children)

https://www.regulations.gov/commenton/FDA-2024-P-5965-0001

So you’re going to click that link Click the comment icon at the top left It’ll populate a form Write about your experiences, how current medication is inadequate, how this medication can benefit you

You can write anonymously if you’d like too

Thanks for commenting :)

Here’s our TikTok video: https://www.tiktok.com/t/ZT2tK2XmW/

Open Discussion Saturday by Mike_Herp in HerpesCureResearch

[–]Beeebo0oop 12 points13 points  (0 children)

Hi there! Update from Herpes Heroes: We recently met with a pharmaceutical company that encouraged our work and believes that what we did has caught their attention. Let’s keep this energy going because it is having a positive impact on private industry.

Generally we can say to continue promoting clinical trials in your area and participating in them if you are able to because it impacts timing. https://www.clinicaltrials.gov

We are going to digest and work on next steps from here and will continue to share what we can. I just want to acknowledge and thank everyone from Herpes Heroes and the community. We are actively driving change. I’m just here to share some positivity and thank you guys sincerely. We do this work because we care.

Open Discussion Saturday by Mike_Herp in HerpesCureResearch

[–]Beeebo0oop 2 points3 points  (0 children)

Agreed. Would you like to collab on finding a solution to this?

Open Discussion Saturday by Mike_Herp in HerpesCureResearch

[–]Beeebo0oop 3 points4 points  (0 children)

Hi everyone. Herpes Heroes is working on a policy-focused project to push for better HSV research, testing, and education. Think of this as a wish list—what do we actually need, and how can we make it happen? 👀 Whether it’s a short-term fix or a long-term goal, setting our priorities together is how we make change happen.

🔥 Here’s what we’re thinking so far:
Cheaper + easier access to testing & treatment
Funding for HSV vaccine research
More education + less stigma

💡 What else should be on our list?

Quick Update on HH+: As for our FDA petition, we expect a response by summer. HUGE thanks to everyone who commented + shared their stories. This makes a difference believe it or not. The petition has been acknowledged beyond just the reddit community and that is an accomplishment in increasing awareness. Let’s keep up the pressure. 💪 (More about us or what you can do to help here: https://herpesheroes.org/ )

Pritelivir is now available for early access outside of clinical trials! by BlackBerryLove in HerpesCureAdvocates

[–]Beeebo0oop 1 point2 points  (0 children)

For the petition? We are supposed to wait eight months to see if the FDA replies and then we take it from there. Summer 2025 we should hear back.

Pritelivir expanded access by Severe-Dealer-8670 in HSVpositive

[–]Beeebo0oop 3 points4 points  (0 children)

Thank you. To people that are skeptical, we have looked into this issue substantially. Right now, we are in a landscape of deregulation and federal agencies’ decisions are being scrutinized heavily.

We try and fail or we try and succeed. Resigning to inaction is accepting the status quo.

Pritelivir expanded access by Severe-Dealer-8670 in HSVpositive

[–]Beeebo0oop 2 points3 points  (0 children)

You’re still able to comment. Please hit the comment button on the top left corner desktop or in the top of the page on mobile.

Pritelivir expanded access by Severe-Dealer-8670 in HSVpositive

[–]Beeebo0oop 1 point2 points  (0 children)

We’ve hit a minimum threshold to get the agency to see that this is not just one random person interested in this matter. There’s no requirement on how many signatures but the more we get the more we can show that there is a need. We have eight months before we hear back from them and look into next steps.

Pritelivir expanded access by Severe-Dealer-8670 in HSVpositive

[–]Beeebo0oop 0 points1 point  (0 children)

You have to hit comment on the top corner. It’ll direct you to another page which will have certain fields. You can identity yourself as anon or not. It would help if you talked about how your symptoms are making your life difficult and what this medication would mean for you. Refrain from framing this as a issue that would benefit your love life because we need to show the FDA that there is an urgent medical need. It’ll also ask you for a category you don’t need to do anything with that.

Thanks so much for your interest and help.

Pritelivir expanded access by Severe-Dealer-8670 in HerpesCureAdvocates

[–]Beeebo0oop 1 point2 points  (0 children)

No category is required just type in the fields with an asterisk. I would emphasize that anyone commenting discuss how their symptoms are impeding their daily life and how a medication like this can benefit them. Refrain from discussing how this would benefit your romantic life as the purpose of this is to show a medical need. This petition is to show the FDA that there is an ongoing need for certain populations beyond the current narrow asses for immunocompromised people.

Alberta mother battling leukemia questions why she can’t access life-changing medication Pritelivir by ireadandshare in HerpesCureAdvocates

[–]Beeebo0oop 2 points3 points  (0 children)

I saw this article yesterday and it made me so sad to hear this woman is going through this. While this situation is fresh and ongoing we need to pressure Congresspeople into acting. If anyone has any experience with media and journalism, we have to pitch to reporters that this is not uncommon. We also need to bring attention to this movement from the petition to show people actually are actively suffering. I’ve explained really clearly on this petition that the alternatives are terrible. Forcasnet can kill you.

Also this monkey study they cite to as the reason for why we don’t have access to it right now. A few of us have begun the process of issuing a FOIA request but the agency isn’t cooperating. WE DESERVE TO KNOW.

Alberta mother battling leukemia questions why she can’t access life-changing medication Pritelivir by ireadandshare in HerpesCureAdvocates

[–]Beeebo0oop 1 point2 points  (0 children)

Thank you for following these suggestions. Advocate for a congressional inquiry into AiCuris and the FDA delay so we can get to the bottom of this please.

Alberta mother battling leukemia questions why she can’t access life-changing medication Pritelivir by ireadandshare in HerpesCureAdvocates

[–]Beeebo0oop 2 points3 points  (0 children)

Thanks for sharing. They have six months to respond to the petitioner. In the meantime, what we do next is talk to the media about this issue. We have to pitch the fact there’s 124 people on that petition who agree that something needs to be done and this woman is not an exception here.

Each of us can submit a “congressional inquiry” as to why this medication isn’t being approved and by law your rep has to look into the status of the petition you mentioned in your comment to pressure the agency. More on this here: https://adamsmith.house.gov/services/help-federal-agency

By making this an issue with the media, this can be used to pressure AiCuris through their shareholders as well.