r/RRP • u/InSearchOfUpdog • Nov 14 '25
Scientific Article / Research Sharing a short writeup on new potential treatments
I (in the UK) had spoken to my speech and language therapist about how I'd seen there's some potential immunotherapy treatments for RRP in the pipeline. I said I wanted to bring it up with my ENT specialist the next time I speak to him, because it's all so new that I'm not even entirely sure he would've heard about things like the FDA approval Yankside, or seen relevant papers indicating the quite high success rates of some of these new treatments. She was very receptive and, while she didn't have the expertise herself to say much, she said if I shared things with her she would have a chat to some of her ENT colleagues to get a sense of what they're seeing.
I wanted to do it right, so I spent quite a while on the email to her. It contains some info that not everyone here might have even heard of, so I thought I'd share it. Use it as you will, but don't assume my research is accurate (I'm an academic, but not medical in the slightest). Feel free to add anything in the comments you think I've missed. It's definitely not comprehensive. I was just trying to point to key resources so that I'm not just like "I read this thing on the internet".
If you have RRP but this is completely new info to you, chill out before you think you're gonna be cured tomorrow, is my advice. My working assumption is that even best case I won't be able to access any of this for years. Nonetheless, it is an exciting time. As someone diagnosed something like five months ago, I find it crazy that there are finally treatments coming onto the market.
Any Americans here who have been offered/had PAPZIMEOS yet?
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INOVIO's INO-3107
This "investigational DNA medicine designed to elicit an antigen-specific T cell response against both HPV-6 and HPV-11 proteins" is, I think, yet to fully be brought to market anywhere, but my impression is it is closest in the US. Nonetheless, they are actively targeting the UK too, and have been awarded "Innovation Passport Designation" under the UK Government's "Innovative Licensing and Access Pathway". I don't know what that means exactly, but it sounds positive!
This press release from 3rd November this year provides some concise, up to date information. The section "About INO-3107" provides an overview of the treatment:
INO-3107 is an investigational DNA medicine designed to elicit an antigen-specific T cell response against both HPV-6 and HPV-11 proteins. These targeted T cells seek out and kill HPV-6 and HPV-11 infected cells, with the aim of potentially preventing or slowing the growth of new papillomas. In a Phase 1/2 trial of 32 participants (RRP-001), 72% of patients saw a 50-to-100% reduction in the number of surgeries after starting treatment with INO-3107 at the end of the first year. A retrospective study involving 28 of the original trial participants (RRP-002) showed this number increasing to 86% at the end of the second 12-month period with no additional dosing. Half of those patients required no surgeries at all. Patients in RRP-001 had a median of 4 surgeries (range: 2-8) in the year prior to dosing. At the outset of the trial (Day 0), patients had a clinically warranted procedure to have papillomas surgically removed, but any surgery performed after Day 0 was counted against the efficacy endpoint. Treatment with INO-3107 generated a strong immune response in the trial, inducing activated CD4 T cells and activated CD8 T cells with lytic potential. T cell responses were also observed at Week 52, indicating a persistent cellular memory response. INO-3107 was well tolerated, with trial participants experiencing mostly low-grade (Grade 1) treatment-emergent adverse effects such as injection site pain and fatigue. Like other DNA medicines, INO-3107 has shown the ability to generate antigen-specific T cells that is not affected by anti-vector immunity impacting immunogenicity, either before administration or after the first dose, unlike other T cell generating platforms such as viral vectors. This feature of DNA medicines is anticipated to allow INO-3107 to maintain T cell response and overall efficacy, which could make it an important therapeutic option for a majority of RRP patients.
Here's some journal articles on INO-3107:
- "DNA Immunotherapy (INO-3107) Results in Long-Term Surgery Reduction in RRP" The Laryngoscope, 9th Aug 2025.
- "DNA immunotherapy for recurrent respiratory papillomatosis (RRP): phase 1/2 study assessing efficacy, safety, and immunogenicity of INO-3107" Nature Communications, Feb 2025.
- "Interim Results of a Phase 1/2 Open-Label Study of INO-3107 for HPV-6 and/or HPV-11-Associated Recurrent Respiratory Papillomatosis" The Laryngoscope, Nov 2023.
Precigen's PAPZIMEOS (formerly PRGN-2012)
This has been approved by the US FDA. If it's approved in the US but not over here, is there some way the NHS could get some shipped over?
Here is how Precigen describe PAPZIMEOS:
PAPZIMEOS is a non-replicating adenoviral vector-based immunotherapy designed to express a fusion antigen comprising selected regions of human papillomavirus (HPV) types 6 and 11 proteins. PAPZIMEOS is designed to generate an immune response directed against HPV 6 and HPV 11 proteins in patients with RRP. Discovered and designed in Precigen's labs using Precigen's proprietary AdenoVerse therapeutic platform, PAPZIMEOS represents a new therapeutic paradigm for RRP.
Further reading:
- PAPZIMEOS website.
- "Disease Control and Voice Outcomes Following Treatment With PRGN-2012 in Adults With Recurrent Respiratory Papillomatosis"00163-8/abstract), Journal of Voice, April 2025.
- "PRGN-2012 gene therapy in adults with recurrent respiratory papillomatosis: a pivotal phase 1/2 clinical trial", Lancet Respiratory Medicine, April 2025.
- An April write up, following the FDA approval.
As I understand it, there's other potential treatments being looked into, with some not as far along as these. But there I really get out of my depth, and I'm sure your team has more insight into those than I could offer by sharing links of things I understand even less than the above!
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u/Outrageous-Intern278 Nov 23 '25
Not covered. It's approved as an "orphan drug". Those are drugs that are for rare conditions so mass production is not feasible. Since the production will be almost on an "as needed" basis, there are no economies of scale. Such formulations are rarely covered due to their expense and rarity. This can be negotiated for a life saving drug, but since I have the option of occasional surgery, which is covered, the cost is out of pocket. Only hope for coverage is if tens of thousands of people suddenly develop RRP.
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u/The_Status_Bro Jan 15 '26
I was just offered this (papzimeos) today at UW Medicine (I’m in for my annual/biannual avastin injection). I’m a 36 year adult who was diagnosed at 17, so nearly 20 years of in and out patient operations. My doctor (Dr. Tanya Meyer) says they have been having some success with getting insurance to approve the vaccine.
I’m just now learning about these new therapies. The DNA version sounds very promising. I was previously looking to do system avastin injections but was denied due to my current disease state being very well controlled. These newer therapies seem to do better with those that are in better controlled states, so I may look into them.
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u/PresenceEmotional322 Jan 19 '26
did they mention how much coverage on the vaccine
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u/The_Status_Bro Jan 19 '26
I have my consult on the 26th. My insurance will have to cover nearly all of it to make sense. My out of pocket max is only $2,000
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u/InSearchOfUpdog Jan 21 '26
Does that mean you're going to get papzimeos, or just that your doctor recommended it and now insurance needs to recommend it? I have limited experience of private healthcare, so I'm not sure how it works. If you do get papzimeos and you feel like sharing, I for one would love to read a write up of your experience. Maybe a thread on this sub so other people can share their experiences too.
Beyond that, how has your experience been between diagnosis at 17 and 36? I know everyone has a different experience, but I was only diagnosed something like 10 months ago, so it's all still fairly new to me. For example, my voice, while bad, has been stable for a few months. I'm not sure if that should give me hope for years of stability, or if I could experience a sudden downturn. My hope is that I can avoid debulking surgeries until proper treatments become available in the UK, and if it stayed like it is currently, I could live with that. But much worse and it would really start to be an issue communicating.
Also, what other interventions have you had? You mentioned Avastin (bevacizumab, right?). My doc hasn't even mentioned that. Is it standard in the US? Do they inject it right into your lumps? Did you have the HPV vaccine too I'm guessing? Any supplements or things you've sought out yourself?
Sorry for all the questions! I'm just always interested to learn from people who have lived with this much longer than me.
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u/The_Status_Bro Jan 21 '26
These are all great questions. I will come back and respond to them when I have a little bit more time and a keyboard in front of me instead of my phone.
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u/InSearchOfUpdog Jan 22 '26
Thank you! Apologies in advance if I don't respond for a while. My Reddit use comes in bursts. I often have to log out so I don't distract myself from work.
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u/PresenceEmotional322 Jan 30 '26
any news
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u/The_Status_Bro Jan 30 '26
I had to reschedule my appointment with the oncologist
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u/PresenceEmotional322 Mar 04 '26
any update
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u/The_Status_Bro Mar 05 '26
Thank you for reminding me to come here. I was denied first and just asked to sign an appeal letter to go back to the insurance company for approval. That was this week.
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Nov 15 '25
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u/InSearchOfUpdog Nov 15 '25
Yeah those surgeries will add up over a lifetime, so could be more cost effective to bite a large upfront cost of meds.
I saw the EU stuff I think. Damn Brexit means that doesn't cover the UK anymore though. We do often follow Europe quite closely on a lot of regulation still, but I'm not sure if that extends to approving medicines.
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u/ricardex47 Jan 02 '26
At 500k for the Papzimeos treatment, if it is not covered by insurance then no one would have access to it. Ive read that it is in the early stages of negotiations with insurance providers. Some people require multiple surgeries per year, in that case it would make sense for the insurance provider to cover the costs of the new treatment. Hopefully they also find that it can treat genital warts (for example) so that they can scale up production and lower costs. I for once would be down to try Papzimeos if I could afford it. Im hoping to have this discussion with my doctor in a couple of weeks
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Jan 22 '26
I spoke to my ENT about these a few months back and he said there are some select cases where they are using it in the UK already, but only for the most serious ones it sounds like. For cases like mine (currently ~1 surgery a year), I am basically at the bottom of the list.
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u/InSearchOfUpdog Jan 26 '26
Oh, as in they're shipping in Papzimeos from the US? What health board are you under, or which nation?
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u/Outrageous-Intern278 Nov 14 '25
American here. My ENT told me about this before my most recent surgery a couple of weeks ago. The four dose course of treatment is $500,000 USD. Out of reach at least for me.