A conversation with a Rigvir flack

Over the last two Mondays, I’ve been writing about an unproven cancer therapy that I hadn’t really heard much about before. The cancer treatment is called Rigvir; it is manufactured in Latvia and marketed primarily through a Latvian entity called the International Virotherapy Center (IVC). To recap, Rigvir is an unmodified Echovirus, specifically ECHO-7, that, according to the IVC, seeks out cancer cells, replicates in them, and thus lyses the cancer cells (causes their membranes to break, spilling out the cancer cells contents, thus killing the cell), hence the term “oncolytic virus.” Somehow, mysteriously Rigvir was approved by the Latvian equivalent of the FDA in 2004 for the treatment of malignant melanoma despite what appears to have been grossly inadequate supporting evidence and then even more mysteriously placed on the Latvian Health Ministry’s list of reimbursable medications in 2011. I suspect that the reason that I didn’t look into Rigvir earlier was probably because its use had been primarily restricted to Latvia, Georgia, and Armenia. Also, there was the language barrier. Nearly everything available on the web about Rigvir is in Latvian, a situation that has only recently begun to change.

It was Antonio Jimenez and Ty Bollinger who plucked Rigvir from obscurity. Dr. Jimenez runs the Hope4Cancer Institute clinics in Baja and Cancun, Mexico, and, for whatever reason (probably profit), these clinics started offering Rigvir relatively recently. Then, Jimenez, who’s clearly worked with Bollinger in the past, must have turned Bollinger on to Rigvir, and Bollinger included it in a long segment of Episode 3 of his The Truth About Cancer (TTAC) propaganda series of videos. It was this connection and the deceptive use of patient testimonials by both Bollinger and the International Virotherapy Center to sell Rigvir that formed the basis of my second post on Rigvir last week.

As you might imagine, apparently the management of the IVC was not happy about my posts. In fact, so unhappy was the management of the IVC that within 15 hours of my first post about Rigvir going live I got an e-mail from someone named Lelde Lapa, whose title was listed as Assistant of Business Development Department at the IVC, protesting and attempting to refute my post. As I noted before, I was amazed at how fast I received such a long e-mail after publishing my post. Clearly the IVC has many Google Alerts set for Rigvir and its name and was fast to act. What followed was an exchange that currently stands at five e-mails, three from Ms. Lapa, with two responses from me, with Ms. Lapa’s tone (if it indeed was only one person writing these) becoming more strident as the exchange went on. Because these e-mails are a great insight into the thinking (such as it is) at the IVC, I decided that a most excellent way to conclude my series on Rigvir as a trilogy would be to annotate and publish these e-mails, and then to compose a final response to Ms. Lapa’s third email, at the end of which Ms. Lapa told me that I didn’t need to respond.

Clearly she don’t know me vewy well, do she?

So let’s begin. Remember that English is not Ms. Lapa’s native language; so be kind. I wasn’t kind, but not because of any difficulties Ms. Lapa might have had with English.

Rigvir strikes back, round 1

So on the afternoon after my first post about Rigvir went live, I was greeted by this in my e-mail in box:

From: Lelde Lapa < [REDACTED]@virotherapy.eu>
To: [redacted]
Subject: Blog about RIGVIR
Date: Tue, 19 Sep 2017 00:54:53 +0300
Organization: RIGVIR Development department

Orac:

Yesterday we encountered one of your blogs (https://sciencebasedmedicine.org/rigvir-another-unproven-and-highly-dubious-cancer-therapy-to-be-avoided/?utm_source=dlvr.it&utm_medium=twitter)

Due to the fact that this blog is now widely spread by non-professionals with the title – independent conclusion from international expert, we believe we have the rights to inform you that you are used now as a tool in competition wars. Which we believe was never your intention.

The medicine RIGVIR has a clinical experience for more than 50 years and it is registered for melanoma for more than 13 years and before the era of modern trials and most of the evidences is not published. Doctors and clinics in Latvia use this medicine for majority of melanoma patients in Latvia for many years. In Latvia medicine is prescribed only in national clinics and by certified doctors and they have also other alternatives, so probably they know what they do.

2 years ago we started EMA (centralised EU) commercialisation process and even obtained EU commission support from Horizon2020 grant, we also obtained EMA regulatory advice. There is no doubts about the efficacy and safety of the medicine, however we acknowledge that we miss modern trials for centralised registration and we are working on them. This was never a secret to discover.

But year ago a group of very active, mostly anonymous people appeared that started to attack us, our cooperation partners, even EU commission, spreading bias data or even lies. They are very aggressive. Part of the sources they use does not exists, part of materials are generated by them self and republished in different sources mostly social networks, then in blogs and then cross-referenced. Part of material is made as compilation of different phrases and translated in English with certain pseudo professionals on them (By the way two such persons appears also in your blog, these persons however has no proper educations, has never been involved in medicine or science). Moreover at the spring anonymous letter (your blog also indicated it ) appeared. It was signed by few professional organisations of which only 2 are related to oncology and in fact were represented by the same people, this letter contains ~80 lies and tendentious distortion of information. Unfortunately there is no author on the horizon to be responsible for aspersion, but there have been cases when TV and portals have withdrawn similar articles and information about us already.

Mostly your blog analyses openly available data, but partially it contains false information. It contains also comments of pseudo professionals or anti-PR specialists but the producer of RIGVIR was never approached for clarification or comments. Which is sad especially, referring to the statement from the blog: “Somehow I doubt Rigvir will make it that far. At least, I sincerely hope that it doesn’t….”

We believe that also blogs should be objective and respectable professors should use only proven data and also verified sources. So please consider to here also our position and obtain more information about virotherapy with RIGVIR, like clinical trial data and post-registration experience.
We do provide special trainings for doctors and medical scientists.

I hope you are interested,

Looking forward for your replay.

Best Regards,
Lelde Lapa
Assistant of Business Development Department
www.virotherapy.eu

Of course, I had no idea who this Lelde Lapa was. I couldn’t really find anything about her. A Google search of the IVC website for her name didn’t reveal anything. For my purposes, it doesn’t really matter, but I did find it odd.

I can’t help but note here that, although I do not claim to be completely objective, my bias is rather well known: I favor science as the basis of determining which medical treatments do and do not work. I make no bones about that. Moreover, I couldn’t help but immediately note that it’s pretty hard to use “only proven data” when there is so little in the way of proven data upon which to evaluate Rigvir. That was, in fact, my key problem with the drug, that it is unproven and being marketed without sufficient scientific and clinical evidence that it does what is claimed for it.

Here was my response, sent later that evening:

Dear Ms. Lapa:

The Virotherapy Institute must be very on top of its social media to have noticed my post and composed such a lengthy e-mail to me within 15 hours or so after my post went live. If you have any specific examples of errors in my post, feel free to point them out. What I see in your letter is not that; rather, it is spin, as nothing you wrote actually casts into doubt any facts included in my post or in any of my interpretations of those facts.

Yes, I used publicly available information because that’s what many bloggers do when they compose posts. Besides, I was interested in what I view as the irresponsible marketing of Rigvir for more than just melanoma, and there is plenty of that to be found on the Internet and social media. The two videos on your website that I discussed fall into that category, without a doubt. In your e-mail, you state that there are “no doubts about the efficacy and safety of the medicine,” but there are doubts—a lot of doubts—so much so that my jaw dropped when I read that. The reason is simple. You yourself said it: “…we miss modern trials for centralised registration.” Basically, you don’t have anything resembling the level of scientific evidence required before we accept any drug as effective and safe. You have no randomized double-blind clinical trials. All you have are a handful of case reports, a couple of very poorly done retrospective studies, and ancient evidence from decades ago that cannot be inspected and assessed for scientific rigor. In my country, our Food and Drug Administration would laugh at such data.

If you’re making health claims for your product, particularly the glowing claims made about Rigvir’s anticancer activity, then all that matters to me is whether there is solid evidence to back up those claims published in the peer-reviewed medical literature as indexed on PubMed. Of course, this evidence must be in the form of papers reporting improved recurrence-free and overall survival in well-designed, randomized double blind clinical trials of your product for every cancer for which a claim of efficacy has been made. I do not care about unpublished data that I cannot examine myself. I do not care about claims. I do not care about “registration,” as clearly the registration process in Latvia at the time Rigvir was registered left a lot to be desired. I do not care about pilot grants to start to work on approval by the EU. None of that matters when evaluating a therapy if there is no good clinical trial evidence supporting its efficacy and safety. Unless you can provide me with those data, I have no choice but to find your complaints about my article to be without merit.

If Rigvir has been proven safe and effective and isn’t quackery, then why are you selling it to quack clinics in Mexico and Germany? I’m serious. Hope4Cancer, for instance, is a notorious quack cancer clinic that attracts Americans with cancer. This is not in dispute and can be verified by simply reading the Hope4Cancer website and examining the treatments it offers cancer patients. Also, if Rigvir has been proven safe and effective and isn’t quackery, then why was it featured on Ty Bollinger’s “The Truth About Cancer” video series and, more importantly, why is the administration of the International Virology Center proud of being featured in his videos? Bollinger is a notorious promoter of cancer quackery. (I can provide many examples of him promoting dubious, unproven, and quack treatments for cancer.) No reputable company selling a cancer treatment scientifically proven to be effective and safe would ever want to be associated in any way with the likes of Hope4Cancer or Ty Bollinger, because it would tarnish its brand and bring it into disrepute.

In actuality, your response makes me more confident than I was originally that I was correct in my assessment. Your paranoia, for instance, is makes me very suspicious. You rail against “anonymous people” attacking Rigvir and the Virotherapy Center, but isn’t it true that the complaints to the Latvian Health Ministry came from the two main oncology professional associations in Latvia? That’s hardly “anonymous.” They are respected professional medical societies! I also have seen quite a few criticisms of Rigvir on blogs and have been able to identify everyone making the criticisms so far. Perhaps you meant The Mad Virologist, but he isn’t really anonymous either. His name is in his Facebook profile, which I found in two minutes. Complaints about “anonymous” people out to disparage a product always make me think a company has something to hide.

Finally, I understand that you and Latvia are proud of Prof. Muceniece’s accomplishments, but ask yourself this: If she were alive today, would she want her name associated with selling her discovery before it’s actually scientifically demonstrated to prolong the lives of cancer patients or cure specific cancers?

Orac

In actuality, I had no idea whether Prof. Muceniece would care what the IVC is doing. I just wanted to see if there was any sense of shame over what the IVC was doing with her invention.

Rigvir strikes back, round 2

A couple of days later, I received this. For reference, the blog by Eduards Ritums was discussed in my first post and used in part as a basis for some of my criticisms. In any case, note the somewhat paranoid tone. I also showed my e-mails to a skeptic from Latvia who has been active investigating Rigvir, who thought that the style changed enough that it might have been written by someone else. I don’t know for sure if that is the case (you can judge for yourself), but I do know that the fallacies and dubious arguments flow freely and with paranoia:

From: Lelde Lapa < [REDACTED]@virotherapy.eu>
To: ‘[REDACTED]
Subject: RE: Blog about RIGVIR
Date: Thu, 21 Sep 2017 10:03:42 +0300
Organization: RIGVIR Development department

Dear Orac

As we indicated in our last email your blog now is spread widely in Latvia as a proof that our medicine is not effective. Was it a goal of your blog?

We got impression that the blog is a part of wider campaign that is currently in place in Latvia and therefore we just wanted to warn you ASAP and protect your reputation by providing more information if you are ready to hear it.

Part of your blog is based on the article that is published by author E.Ritums initially in very specific marketing magazine for Pharmacies. This magazine is published by Medicine Information Centre (http://mic.lv/materia-medica/ ) that is not registered in the register of mass media and even provide marketing services (http://mic.lv/materia-medica/). In addition the content of this magazine (according to law in Latvia) is considered to be specialised publication and may not have public access. The author however (based on google search) is young graduate from faculty of Chemistry that in addition to this particular article has published few (~3) more small articles and hardly is respectable journalist. Particular publication consists of number of fact errors and doubtful allegations and there is no respectable or proven sources, books or reviewed publications indicated as reference. Moreover former manager (for 12 years) of the same publisher and magazine Inara Rubene ( https://www.linkedin.com/in/inara-rubene/) is presented as independent expert here. The biggest issue is, however, the fact that this article later, bypassing limited access info (according to law) to specialists, was translated (with inconsistencies) and spread widely with help of very small, non registered NGO – Skeptiskā Biedrība (https://www.lursoft.lv/lapsaext?act=URCP&ref=LurTop&regcode=&task=search&company_name=&tipas=&CompanySearchForm%5BcompanyName%5D=Skeptisk%C4%81+Biedr%C4%ABba&CompanySearchForm%5Bcountry%5D=&utf=0&general=Skeptisk%C4%81+Biedr%C4%ABba&cid=LVA_NG_PROD), that operates web site – www.skepticisms.lv. Do you consider this as trustworthy source to build part of your story on?

Please note that official page of the product RIGVIR is rigvir.com and there is no marketing at all. Page virotherapy.eu is mostly dedicated to therapy not medicine – there are news, testimonials and trainings. It is not a clinic or pharmacy to speak about marketing. Should we hide testimonials, if there are such?
In Latvia there are very strict regulations for marketing of pharmaceuticals and there is no official judgment from Latvian Health Inspection about as you say “irresponsible marketing”. Moreover the only one claim from Latvian Health Inspection, that initially was stated so, is already changed clearly stating that we cannot be responsible for third party activities.

As you know the clinical studies are done mostly for official approval of medicine and according to Bloomberg at least one third of studies are never published. So if you are clearly stating that you don’t care about unpublished data, then please adjust title of your blog to something like “Analysis of published data of RIGVIR”. Because ignoring unpublished clinical trials for more than 30 years, you simply don’t have all the facts to loudly state that our medicine is not effective or it should be avoided.

Let us clarify that medicine RIGVIR is registered in Latvia in 2004 for Melanoma, before the era of modern requirements for trials, but based on clinical trials during 30 years period in which ~700 patients was treated with the medicine RIGVIR (there is also registration in Georgia and Armenia). The medicine is used as conventional therapy in Latvian, Georgian and Armenian clinics. In addition to that, patients from all over the world are coming to Latvia or sometimes are sending relatives or trust-persons to Latvia to buy this medicine in case traditional therapies have not succeeded or are not well tolerated. Yes we do train medical doctors from all over the world and probably their patients also have acquired medicine from Latvia. We know that the medicine is effective, we have seen it working on many thousand cases and we clearly know that it has no side effects. So knowing that, should we refuse to help patients of any Doctor?

We are not company that is developing innovative solution and according to the heritage of the founder prof. A.Muceniece the medicine should be available to as many patients as possible. We are not refusing the knowledge and information to any official doctor, official clinic or patient groups. So we don’t see any problem also from appearing in The Truth About Cancer series.

Most of our critics and also yours complains are catch-22 logic – “give us evidences before you use it -> new evidences requires investments -> to provide investments we need to use medicine –> to use medicine we need to be commercialised -> but with the existing evidences you doubt us to be commercialised …” As if only rich pharmaceutical or biotechnological companies may work in the field…

You are stating that you don’t care about existing registration, but unfortunately your analysis is used to doubt the registration. Which is off course strange, because nowhere in the world rules and regulations (in our case standards for clinical trials) are used with backward date.
Yes for new registrations – we know the rules – we will provide proper RCT data, but as for now, please respect that the medicine is prescription medicine that is prescribed only in national clinics and by certified doctors for last 13 years. They have alternatives and even reimbursed ones. So obviously these doctors have deeper knowledge about the therapy with RIGVIR, than just analysis of published data, since it is used for more than 70% of Melanoma patients in Latvia.

We suggest you to learn about this therapy and try it yourself for your patients (that follows entrance criteria) as well. In such case and with your commitment to make case report and publish it, we would provide all the necessary assistance and medicine free of charge.

Best Regards,
Lelde

Gee, Ms. Lapa makes the observation that my blog post has been circulated far and wide in Latvia as evidence that Rigvir doesn’t work as though that were a bad thing! In actuality I can’t help but feel a bit of a warm and fuzzy feeling in the pit of my cold, black heart that my post has actually been circulated far and wide in Latvia. Those behind IVC will probably take this as evidence that I’m out to get them, but I’m not. I’m out to protect cancer patients. If the IVC had the goods, as far as evidence, the easiest thing for its management to do would have been to publish it or somehow show it to me and other skeptics who are concerned that Rigvir is cancer quackery. We can be persuaded, but it takes evidence.

Finally, notice that last part, in which “Ms. Lapa” tries to co-opt me, thinking that if I were to try Rigvir I would conclude that it works. I’ve noticed this pattern before, and where I’ve noticed before it isn’t flattering to Rigvir or the IVC. You see, I’ve discovered that when it comes to cancer quackery or unproven cancer treatments I seem to have special cachet because I am a cancer surgeon and researcher. Thus, from time to time, cancer quacks try to convince me to try the treatment they are selling on my own patients. In my response, I decided to stomp down hard on this offer after giving a bit of a lecture. See what you think:

Ms, Lapa,

Although I appreciate your concern about my reputation, I think I’m probably the best judge of what will or will not damage it. In other words, I’ll take my chances.

Regarding Eduards Ritums’ article, which I did cite extensively, I tend to judge an article and its main arguments far more by quality in terms of evidence, science, and reason than by who wrote it. Even though the article I read was an English language translation, Mr. Ritums’ central thesis and arguments nonetheless came across as very sound. It doesn’t matter if he’s young and early in his career and thus hasn’t published very many articles yet. In other words, who cares if Mr. Ritums published his article in a pharmacy magazine and is a new journalist? I certainly don’t. As for whether the magazine is “registered” or not, as far as I’m concerned that is a matter of your country’s specific laws and ways of doing things. It means very little to me as an American reading a translation of the article. In fact, it wouldn’t matter to me if Mr. Ritums wrote for an unregistered blog under a pseudonym if his arguments, science, and evidence were sound. Certainly, you have not demonstrated that they are not sound; you state that there are a “number of fact errors and doubtful allegations,” but, oddly enough, you have not actually specified the errors of fact or “doubtful allegations,” much less used evidence and science to show that they are factual errors or doubtful allegations. You have instead engaged in nothing but ad hominem, which is a logical fallacy. To convince me, you’re going to have to get a lot more specific and provide the evidence to back up your criticisms, something you have not yet done after two long e-mails. I find this very telling.

As for your claim that official Rigvir website is not about marketing, I beg to differ. The whole website is clearly all about marketing, as all pharmaceutical company websites are. Indeed, it looks just like any other pharmaceutical company webpage promoting its products, complete with slick videos, like the one on this page. Basically, your website looks like any of a number of websites pharmaceutical companies maintain for individual products, like Herceptin, OncoTypeDX, or various new drugs. It’s not quite as slick, but it is very similar in appearance and content. True, it doesn’t contain patient testimonials, but that doesn’t make it any less a marketing website. Regarding the testimonials on the Virotherapy Center website, as a surgical oncologist, I find them quite misleading. Insufficient information is provided to allow me to judge whether Rigvir might have had an effect, and one in particular is definitely not evidence that Rigvir had a positive effect. Again, when I accused you of irresponsible marketing, I did it from my perspective as a cancer surgeon and researcher. Again, I really don’t care what Latvian law says with respect to marketing pharmaceuticals. Clearly, from my perspective, Latvian law is far too lax if it allows you to market Rigvir.

You say that Rigvir was registered in 2004, “before the era of modern requirements for trials.” I hate to tell you this, but the basic standards for modern clinical trials were codified decades before that. In the US, it was 55 years ago in 1962 when the Kefauver-Harris Amendment to the law creating the FDA mandated that the FDA to require rigorous clinical trial evidence of efficacy and safety before it approves a drug for marketing. Are you honestly telling me that 42 years after that Latvia still didn’t require such evidence before approving a drug? If true, I find that shocking. Be that as it may, Latvia’s lax drug regulation 13 years ago is not an argument in support of the efficacy and safety of Rigvir even for melanoma, much less other cancers. Certainly, it doesn’t excuse you from selling the drug to a quack clinic in Mexico. And, make no mistake, Hope4Cancer is a quack cancer clinic, as I have documented elsewhere. (It even offers coffee enemas.) I’d suggest that, if you really want Rigvir to be accepted outside of Latvia, Georgia, and Armenia, selling it to a quack clinic to market to patients it is not a winning strategy. It will taint Rigvir with the stench of quackery. I’d highly suggest that you sever all ties with these clinics immediately, but I suspect that suggestion will fall on deaf ears.

You say over and over that you “know” that Rigvir is effective. The fact is that you do not, at least not based on science and clinical trials, which is how doctors are supposed to know which drugs work and which do not. You claim that I ignored 30 years worth of clinical trials. Whose fault is that? You haven’t published them in a form that can be critically examined. If you had, I would have critically examined them. You wouldn’t even have to translate them into English. I’m sure I could find someone to translate the data for me if you were to publish all this data. Why don’t you?

No, I will not change the title of my post. It is accurate, as far as I am concerned. I stand by my opinions and conclusions, and, yes, I still strongly believe that you should stop marketing Rigvir until such a time as clinical trials show it to be safe and effective. Certainly it should not be used for any cancer other than melanoma, and even for melanoma I don’t think you’ve shown sufficient evidence that it works to justify marketing it. Again, I say this because you can’t show me any decent scientific or clinical trial evidence to change my mind. Again, why is that? Does this evidence actually exist, or does it actually show Rigvir has such miraculous effects against melanoma? I suspect that it either does not exist or is not nearly as impressive as you claim. Indeed, there is a contradiction here. You say that 70% of melanoma patients in Latvia since 2004 have been treated with Rigvir. Why is it, then, that you could only find 52 melanoma patients treated with Rigvir for your 2015 Melanoma Research paper?

Finally, although I am intrigued by your offer to provide Rigvir for free for me to try on my patients, unfortunately I don’t see how I can do it. Let me explain to you how we do things in the US. Doctors here can’t just go around administering unapproved drugs willy-nilly to patients if we feel like it. Were I to administer Rigvir to patients without proper approvals, I would quickly find myself in deep legal trouble—and rightly so! Were I to want to administer Rigvir to patients, it would have to be in the form of a clinical trial. I would first have to submit an Investigational New Drug (IND) application to the FDA, because Rigvir is not approved in the US. The FDA would then have to approve it. Next, I would have to write a protocol for a clinical trial. Let’s say I chose to do a phase I clinical trial, which would not require randomization. That application would have to be approved by the FDA and approved by my institution, specifically my cancer center’s Protocol Review and Monitoring Committee and my university’s Institutional Review Board (IRB). Both would almost certainly say no, based on lack of evidence to justify the trial. They would want preclinical evidence in cell culture and animal models, at the very least, or more compelling human evidence. You can provide me with neither.

Of course, certainly I would be happy to review the educational materials you provide doctors who wish to administer Rigvir to patients. Maybe they would start to change my mind, although I’ll be honest with you and inform you that I doubt it. However, contrary to what you think, my mind is not closed. What it takes to open it more is high quality scientific and clinical evidence. Provide it, and perhaps it will convince me. If you continue to fail to provide it, and you’ll never change my mind. The ball is in your court.

Sincerely

Orac

Rigvir strikes back, round 3

The IVC didn’t respond right away. It took a few days. Indeed, I was beginning to wonder if Ms. Lapa was going to respond again at all, particularly after nothing arrived immediately after my second post about Rigvir. Then, just as I was about to send a quick e-mail to tweak Ms. Lapa and see if I could get a response, this hit my e-mail in box:

From: Lelde Lapa < [REDACTED]@virotherapy.eu>
To: [REDACTED]
Subject: RE: Blog about RIGVIR
Date: Tue, 26 Sep 2017 18:55:40 +0300
Organization: RIGVIR Development department

Dear, Dr. Orac

…We are very grateful for every objectively critical remark that is addressed to RIGVIR and we always are trying to provide additional information to the source in order to improve objectivity. This time we however are relay surprised that someone who calls for scepticism and ask for proves, can easily believe to articles without any proven references or sources, that contains statement from people openly in conflict of interest and that is published in non-official portals in order to avoid responsibility for aspersion. And particularly we are sad that you was never interested in our position or in our facts that we openly offered and that are not published.

During last month we have seen lots of false news and lies that was spread in Latvia in order to neglect RIGVIR, part of these news is spread under the name of respectable organisations. But unfortunately most of the stories does not have real authors. Most of this campaign is done via social networks so we need time to respond to attacks and we will inform you about the results. In the meantime we are open to organise professional seminars and conventions to share our information. For example, last Friday during the 8th Latvian Doctors Congress, satellite symposium about virotherapy and RIGVIR took place. Reports on clinical trials and post-marketing experience in clinical practice were presented to doctors. Around 5000 doctors were invited and everybody had chance to ask any question to our leading managers. We however received no question from the audience.

Regarding rigorous clinical trials, most probably the definition has changed over time. For example the 1.st RCT ever was run just after the WWII. What we today call rigorous was defined only in the late 1990ies. While for example the FDA started requiring 5 year survival data for oncologic drugs, in the early 2000 those kind of data were still available only for a portion of NDAs. However A very direct outcome of WWII was that Latvia lost its independence. As a consequence, Latvia was literally thrown decades back, as well as held back, in all aspects of an advanced society. You may find that shocking to learn in 2017, but we can assure you that was a shocking “experience” already at that time on site. And it lasted for 50+ years. A slight and minor side effect, was that regulatory requirements did not adhere to the US framework. They were the so called Soviet style, which include lack of publication as well. Today, however, Latvia is part of EMA territory with the most up-to-date regulatory requirements. Therefore, the mode of showing efficacy has changed both over time and in space. Nevertheless, the requirements regarding efficacy were and are fulfilled. And this again is approved by the Ministry of Health of the Republic of Latvia that on 4th of September 2017 issued official statement supporting that RIGVIR is registered and included in the list of reimbursed medicines appropriately (see English translation enclosed) and here is in latvian source: http://www.vm.gov.lv/lv/aktualitates/preses_relizes/5507_par_zalu_registracijas_kartibu_/

Regarding the use of Rigvir in Latvia. It may also come as a surprise to you that the medical records system in Latvia has not really changed since WWII. This, of course is not the companies responsibility. It may perhaps assist you in appreciating inclusion criteria used and the effort in managing the analysis published in Melanoma Research.

When you discuss about our clinical trials or reproach us about lack of publications we are kindly ask you take into consideration also the economic differences between USA and Latvia fully into account, for example GDP per Capita in Latvia is around 15 thousand Dollars, while in USA it is 52 thousand Dollars or for example the whole budget for melanoma treatment of Latvia is around 0.7 MUSD. In other words you know how much those things costs and you should not judge from the stand point of the most advanced economy with the highest healthcare and science budgets.

We are founders (Prof. A.Muceniece) family owned company that’s heritage is to provide this innovative treatment to any patient in the world who needs it and we will not discriminate any patient regardless from which clinic the patient comes.

In your latest blog you have analysed part of testimonials about virotherapy with RIGVIR (Please note however that Ty Bolinger’s activates are not related to us). We have seen complains that stories of our patients was just coincidence or that there were other factors behind the survival. But what if we would provide you with many dozens of such testimonials and cases? Is there something at all to convince you? This brings us back to the offer to you – to try the medicine for your patient. For early stage patient they should use medical tourism to Latvia, but with late stages or in cases where there are no other treatment solutions, you might consider in application of extended use of non-registered medicine on-name basis to use the medicine in USA. Off course all the time with your supervision to monitor closely the efficacy. This means that it would be case analysis not a clinical trial. Due to work with EMA we would not initiate any activity with FDA yet, although we have preclinical and clinical evidences to start.

We find this discussion, your blog and your activity in twitter really wired. If you suggest that there are better medicine for cancer patients, please use it. We have never limited anyone doing that. RIGVIR is a prescription medicine, patients cannot get the medicine by them self without doctor involvement.

So to wrap up – if you would like to explore virotherapy and use it as a treatment, we are ready to cooperate with you and teach you about our evidences.
But further correspondence and the exchange of opinions is not necessary any more.

Sincerely,
Lelde

Ms. Lapa (or whoever I’ve been corresponding with) might not think that an exchange of opinons “is not necessary any more” and that she can flounce off, digitally speaking, but I beg to differ. So, instead of responding right away, I decided that a public response would be more appropriate, to be unveiled this morning. So here’s my response to Ms. Lapa. I’ll be sure to send her a link to this after this post goes live. After all, why bother if the person to whom I respond doesn’t see my response?

So here we go. Here’s my response written over the weekend:

Dear Ms. Lapa:

You clearly don’t know me very well if you thought I would not respond to this. Indeed, given what Rigvir Holding and the IVC are doing, I think it’s a public service to show what you have been telling me to my readers. It’s also not true that I am not interested in your position. If that were the case, I would never have bothered to engage in this lengthy e-mail exchange. That’s the point. I’ve been trying to find out what evidence you have to support all the claims being made for Rigvir’s efficacy in melanoma and other cancers. All that’s indexed in PubMed is very thin gruel indeed when it comes to clinical evidence. It’s not at all convincing. Yet you keep claiming you have this highly convincing evidence while making excuses for not publishing it and whining about people criticizing Rigvir on social media. Well, I have news for you: That’s the world. Social media matters. You keep claiming that what’s being said about Rigvir is false, but somehow you never actually bother to prove it to be false. And do you know how you could prove that it’s false? Show us the data, just like drug companies in the US and EU have to do!

So you had a satellite symposium on virotherapy at the 8th Latvian Doctors Congress. That’s great, but not enough. A Google search shows that you had this conference but nothing about its results. Most satellite conferences publish abstracts of the work presented at the meeting, at least. Such abstracts are not viewed as being as convincing as a publication in a peer-reviewed journal indexed on PubMed, but they are at least something. After your conference, I am currently still left with nothing. It wouldn’t even matter to me if the abstracts or conference proceedings were in Latvian. Show me the data! You claim to have clinical trial results and postmarketing results presented at this conference? Publish them! After my previous two posts on Rigvir, I’m sure that I can find someone to translate them if necessary. In the end, I can’t help but wonder if your symposium was more of a marketing presentation than an actual scientific conference.

Next, I do not need a discourse on the history of clinical trials and FDA requirements for approval of drugs, as I am well aware of that history and when the first randomized clinical trials (RCTs) similar to what we do now were carried out. I mentioned the 1962 Kefauver-Harris Amendment to the law creating the FDA mandated that the FDA to require rigorous clinical trial evidence of efficacy and safety simply to point out that evidence from high quality RCTs has long been a requirement for drug approval in the US and Europe. In oncology at first that meant measuring an endpoint known as overall (or objective) response rates (ORR), which measures what percentage of the patients treated demonstrate tumor shrinkage. Unfortunately, ORR is not a great surrogate for overall survival. So by the early 1980s, the FDA started to require evidence of improvement in OS. While it is true that these days, in order to speed up the process of drug approval, the FDA has been accepting surrogates for OS, such as pathologic complete response (pCR) and granting provisional approval for drugs that produce such surrogate endpoints, I note that Rigvir has no convincing published data supporting the conclusion that it can even meet those lower standards for provisional approval.

I also do not buy your excuse that Latvia’s medical record system hasn’t changed since World War II. Believe it or not, until very recently, many US hospitals still used paper charts and relatively primitive record keeping. Many private practices still do. It took laws and incentives from the US government to prod our medical system into adopting electronic health records, and, even then, I note that we will probably never have the excellent centralized medical record systems that some countries in Europe do. As for your excuse that Latvia is a poor country. I counter that the very fact that Latvia is a poor country relative to the US and much of Europe is a very good reason that its government shouldn’t be wasting money on cancer treatments whose manufacturer cannot produce strong evidence of efficacy! Yet, since I took an interest in Rigvir recently, I’ve seen claims that up to 70% of melanoma patients in Latvia are treated with Rigvir. In a country like Latvia, that is insanity if true! Think of what could be done with all that money if it were redirected to treatments that work!

I also see Rigvir being advertised as effective against a wide variety of cancers when not even you have claimed to me that it is effective against any cancer other than melanoma. You claim that Ty Bollinger’s activities are not related, but I don’t see it that way. In making the long segment on Rigvir in Episode 3 of The Truth About Cancer (TTAC), Bollinger obviously had the full cooperation of the IVC’s leadership. He brought Dr. Antonio Jimenez with him, who runs the quack cancer clinic Hope4Cancer and is now selling Rigvir in Mexico. He had access to your clinic and interviewed luminaries such as Dr. Ivars Kalvins, your medical director Dr. Kaspars Losans, and your director of research and development Dr. Peteris Alberts, as well as three of your patients. The resulting segment was highly laudatory and presented Rigvir as a miracle cure based on dubious testimonials. Like many cancer patients who found out about Rigvir from TTAC, I had heard very little about your virotherapy before TTAC was released and view the video series as the best marketing for Rigvir I’ve seen anywhere. Somehow, I doubt that you would have cooperated so much with Mr. Bollinger if you thought his segment would do anything other than praise Rigvir and the IVC the way it did.

I conclude by again addressing your offer. I will be blunt. My opinion is that it is unethical, and I will not accept it. Basically, you appear to be paying for case reports that you can publish. My impression of this is backed up by this article on your website about grants for publications, in which the IVC announces that it is offering €5,000 “grants” for “publications on clinical studies of oncolytic virotherapy, observations or clinical cases in a publication that can be quoted in PubMed” and that the study “is intended on using oncolytic virotherapy rather than using oncolytic virotherapy in combination with other cancer therapies, medication etc.” In other words, you want case reports or studies looking only at virotherapy, which, given the doubt about Rigvir’s efficacy, would be highly unethical. I note that you also request that grant applicants “inform IVC on the publication topic and present to IVC the document draft before commencing the project and submitting it to the chosen journal.” To me this sounds as though you expect the paper to be written, regardless of whether the study has already been done or not, but in fairness I will allow that the ambiguity could be due to a poor grasp of English on the part of whoever wrote this web page.

Finally, before you express such disappointment with my blog posts and my activity on Twitter, I note that the Business Development Manager of Rigvir Holding, Kārlis Urbāns, has been attacking me on Twitter using fake news sources. He’s been quite nasty. Here are examples:

I note that he cites a post made by a notorious antivaccine blog, Age of Autism. I note that the bloggers at Age of Autism don’t like me because I routinely skewer antivaccine pseudoscience.

Here’s another example:

TruthWiki is a fake wiki maintained by Mike Adams, who runs the quack and alt right (yes, both) website NaturalNews.com and got his start selling Y2K scams. The conversation after that is quite amusing, even though I can only read it through the stilted English from computer translation from Latvian on Twitter. I note that Mike Adams has been defaming me on his website for a year and a half now and is up to around 40 lie-filled posts about me. You’ll excuse me if I don’t take your lamentations about how mean and nasty I’ve been to the IVC seriously when the BDM and CFO of Rigvir Holding is quoting fake news sources that routinely lie about me and trying to portray me as a tool of big pharma out to destroy Rigvir.

So to wrap up – if you would like to provide acceptable scientific and clinical evidence for the efficacy of Rigvir against any cancer, I am ready to cooperate with you and learn about it. Otherwise, further correspondence and the exchange of opinions are not necessary any more.

Sincerely,

Orac

After that, there’s only one last thing to do:

giphy

Comments

  1. #1 Ren
    October 9, 2017

    Ah, yes. The time-honored strategy of “unpublished data.” I love it. I’ve seen so many young and inexperienced MPH and MHS students try to use that as a catch-all for sketchy term papers. If the data are unpublished, it’s for a good reason. Otherwise, get it published. Surely, in that many years of this drug being around — and if it works — something, anything, must have been published that shows it works. Saying that it works, but that the data are not published, or that there is some conspiracy to keep it from the public (“What THEY don’t want you to know”) is lazy. Have “they” run out of ideas?
    How about something novel to protect their quackery? “This cures all cancers, but only on Tuesdays, in Tijuana, drinking Tequila, with Tomás.”

  2. #2 Jim Sweeney
    Australia
    October 9, 2017

    “Slick, sneaky and insidious”…. high praise indeed from the experts in the field!
    I had a quick browse through some of the “evidence” marshalled to show the evils of Orac. It mostly seems to consist of some pretty hysterical ad hominem attacks and attempts at guilt by association, but I can see how it might worry someone from, say, Latvia who doesn’t know the full story.
    The thing that surprises me most though, is that despite the entertaining fireworks in your posts, the majority of your blog articles actually come down to one simple request – “If you are making claims, show us the data. No data = no acceptable evidence.”
    Surely answering that request should be the first step before complaining about Orac?

  3. #3 Eric Lund
    October 9, 2017

    The medicine RIGVIR has a clinical experience for more than 50 years and it is registered for melanoma for more than 13 years and before the era of modern trials and most of the evidences is not published.

    It’s one thing if the reason the data are not (yet) published is because the paper is in the peer review process. But that’s not the case here.

    I am willing to stipulate that clinical trials may not have been routine in the Soviet Union (of which Latvia was then part) 50 years ago. But by 13 years ago, Latvia was an independent country, and clinical trials should have been routine. Where are the data?

    Mr. Urbans clearly has nothing. Not only is he resorting to argumentum ad hominem, but his argumentum consists of rehashing the claims of cranks who have axes to grind.

  4. #4 Dangerous Bacon
    October 9, 2017

    You’d think that if there are “false news and lies” about Rigvir posted here and elsewhere, Ms. Lapa could have provided you with examples. But there are none, which leads me to believe the negative press about Rigvir is on target.

    It’s odd that Lapa seems to be justifying the lack of rigorous clinical evidence for the drug in part because it’s grandfathered in under the old rules and so proper clinical trials aren’t needed. Shouldn’t Latvians be eager to throw off such vestiges of the former Soviet system and demonstrate that the nation’s health care is founded on solid science?

  5. #5 Lawrence
    October 9, 2017

    Not that I’m biased at all, but I would want to take a hard look at any data from the old Soviet Union in fine detail, before accepting it at face value….

  6. #6 sirchton
    October 9, 2017

    Summary of response from RIGVIR/virothterapy: “I don’t have to show you any stinkin’ evidence!”

  7. #7 MarkN
    October 9, 2017

    I can’t believe they didn’t ask for the $10k to be deposited into joint account, then you receive $100M in frozen Lithuanian bullion trust deposited to yours….and free supplies of Rigvir for your trial. Act now, and you get George Foreman Lithiuanian Grill 2.0!!

  8. #8 Eric Lund
    October 9, 2017

    Lawrence@5: I would rather have data of dubious quality than no data. In the former case, experts (which I am not) could evaluate the data and decide for themselves whether it was worth the pixels it was printed on. Even an expert cannot evaluate data that are not provided.

  9. #9 Rich Bly
    Ocean Shores
    October 9, 2017

    I can’t remember which one of the Balkan Countries runs a great tourist attraction: Ride a cattle train jammed in just like the Jews were during WWII for a 8 hours ride (the good part is they let you loose at the end).

    Very classy countries, so running a scam supported by the government doesn’t surprise me.

  10. #10 Eric Lund
    October 9, 2017

    Rich@9: You are probably thinking of Grutas Park, a.k.a. Stalin World, which is in Lithuania. That’s a Baltic country, not a Balkan country (the same is true of Latvia).

    As citizens of the country that elected Donald Trump President despite his blatant racism, sexism, bragging about sexual assault, and foreign ties that were so obvious every spy agency from McLean to Tallinn knew about them; we don’t have grounds to criticize Lithuania or Latvia for issues that certain individuals in those countries have. I don’t dispute that Viliumas Malinauskas is a first class jerk (it passes for normal among people of comparable wealth), but we need to cast the beam out of our own eye first.

  11. #11 Vicki
    October 9, 2017

    Note that by the standards she wants to hold her critics to, Lelde Lapa isn’t qualified to be talking about this: she’s an assistant of business development, not a doctor or scientific researcher.

    Also, Latvia regained its independence a quarter of a century ago. Rigvir claims that its product has been in use throughout that time (“going back 30 years”). Why haven’t they published their data? Maybe Moscow blocked that in 1986, but what happened after independence. Thirteen years is enough time to collect, analyze, and publish clinical results, if the doctors who are treating those patients wanted to..

  12. #12 JP
    October 9, 2017

    I am willing to stipulate that clinical trials may not have been routine in the Soviet Union (of which Latvia was then part) 50 years ago.

    I don’t know about precisely 50 years ago, but the USA and USSR collaborated on chemotherapy research in the 70s.

    The USSR wasn’t somehow backwards and barbarian when it came to medicine; it’s just that in the practice of medicine, supplies were often short. Doctors did the best they could.

    It wasn’t Mao’s China in the medical sense by a long shot; the medical system was very science based.

  13. #13 Rich Bly
    Ocean Shores
    October 9, 2017

    Eric,

    I don’t know why I said Balkan VS Baltic, I do know the difference.

    I think the US is headed towards a Balkan type culture where every group is against ever other group. Our fearless leader is only helping this process. Where is Rocky and Bullwinkle when you need them (and yes I think Trump is no better than a cartoon character. Actually, on second thought he is lower than a cartoon character).

  14. #14 JP
    October 9, 2017

    I think the US is headed towards a Balkan type culture where every group is against ever other group.

    Bit of a simplification of Balkan culture and even the Yugoslav wars, to be honest.

    My friend Vlad (Serbian dad, Croatian mom, grew up in a village in Bosnia before fleeing) could give a better rundown of both, though, and I don’t have a crash course in me just at the moment.

  15. #15 Rich Bly
    Ocean Shores
    October 9, 2017

    JP,

    Indeed the procedures that Lasik Surgery have derived from began in the USSR.

    I am not sure why the rotating surgical process didn’t catch on though.

  16. #16 Rich Bly
    Ocean Shores
    October 9, 2017

    JP,

    I know that was a very simple minded statement about the Balkans. However, there has been issues for centuries in the area. Have you read: The Good Soldier Sevek (I think I spelled that right).

  17. #17 JP
    October 9, 2017

    @Rich Bly:

    I haven’t; I’ll take a look at it. I do have a fairly good grasp of even pre-20th century Balkan history, if only because I GSI’d for a course that had a large section on Balkan film (for which historical knowledge is important.)

  18. #18 JP
    October 9, 2017

    Oh, I do know that book. It’s about a Czech soldier, though. I actually picked it up in Budapest some years ago, I think.

  19. #19 Rich Bly
    Ocean Shores
    October 9, 2017

    I had to read it long ago for class called Russian 315 but was about the Balkans and the cultural conflicts.

  20. #20 herr doktor bimler
    October 9, 2017

    I don’t remember “The Good Soldier Švejk” venturing as far as the Balkans. There are a few side-swipes against the Slovaks (as one would expect from a good Bohemian like Hašek), but most of the satire is directed against Austrian-Hungarian bureaucratic incompetence and militaristic delusions.

  21. #21 JP
    October 9, 2017

    Hmm. There are a couple “good soldier” books out there, but the closest I can find to that title is The Good Soldier Švejk, which is the one I’m familiar with.

    It is entirely possible that there’s another book out there that plays on the title.

  22. #22 Rich Bly
    Ocean Shores
    October 9, 2017

    JP, HDB,

    You have the right title. It has only been about 45 years ago that I read the book. I won’t make any comments about the fog of age when remembering.

  23. #23 JP
    October 9, 2017

    No worries. I have not even been alive for 45 years.

  24. #24 herr doktor bimler
    October 9, 2017

    Don’t start me on those Slovaks. Rassen frassen [miscellaneous Muttley noises] Slovaks.
    Not that I’m prejudiced.

  25. #25 The Very Reverend Battleaxe of Knowledge
    October 9, 2017

    Rich Bly:

    You probably have Švejk mixed up with Shevek from Ursula K. LeGuin’s The Dispossessed.

  26. #26 JP
    October 9, 2017

    Anarcho-syndicalist science fiction? How have I not read this?

    I read her Earthsea books as a kid (the original trilogy anyway), but didn’t get back to her as an adult. Seems I must.

  27. #27 Chris
    October 10, 2017

    Oh, do. I found her Earthsea books to be annoying, but the Left Hand of Darkness enlightening. Seriously, do read some of these books.

  28. #28 JP
    October 10, 2017

    Left Hand seems right up my alley.

    I liked the Earthsea books a lot, actually; the only reason I didn’t read the later books is because the librarian told me they were sad and not really meant for people of my (then) age.

  29. #29 Chris
    October 10, 2017

    As she ages, her prose faltered. Though there are a few classics among the clunkers.

  30. #30 JP
    October 10, 2017

    I see.

    Specifically, as I remember, the librarian (one of several, but the one I knew best, she recently retired) said that I would probably be better off remembering Sparrowhawk/Ged as a youngish man.

  31. #31 JP
    October 10, 2017

    I think there was a rape theme in the later Earthsea books, too, which is probably why she steered me away from them.

  32. #32 JP
    October 10, 2017

    Honestly almost all of the “classic science fiction” I read growing up was written by men, and some of it was borderline misogynistic, which might partially explain why I only had one (also boyish) female friend until my second year of college.

  33. #33 Chris
    October 10, 2017

    Left Hand of Darkness was all about gender identity. It was the late 1970s, so it took my second reading and the encouragement of a high school friend (who turned out to be the guy at Bose who was seriously involved in noise cancelling headphones) to make me read it again with a more open mind.

    Ms. LeGuin did have her issues with editors at that time, but a few of her novels transcend that. Two of the most important are mentioned in this thread. Stick with those, there is one other but its title eludes me (sorry).

  34. #34 Chris
    October 10, 2017

    By the way there is a reason I stopped reading fiction, and mostly read non-fiction… like biological stuff.

    I did enjoy Vonda McIntyre’s Dreamsnake and The Moon and the Sun, even though I like Star Trek (which she contributes to).

    It is just that after dealing my kid’s health issues and such… the worlds presented by scifi authors are too mundane, and now have nothing to do with our reality.

  35. #35 z
    October 10, 2017

    @JP

    I don’t know about precisely 50 years ago, but the USA and USSR collaborated on chemotherapy research in the 70s.

    The USSR wasn’t somehow backwards and barbarian when it came to medicine; it’s just that in the practice of medicine, supplies were often short. Doctors did the best they could.

    It wasn’t Mao’s China in the medical sense by a long shot; the medical system was very science based.
    ——————————————————————–
    This. After reading their excuses, I tried to look up other medicines that might have been developed in Latvia around the same time. I think the argument of the evil West where Soviet drugs cannot be appreciated or low standards of research falls out the window, when you look at, e.g., ftorafur, now called tegafur. Correct me if I’m wrong, but it looks like it’s still used internationally: http://inventions.lza.lv/proto_e.php?id=36 There was even a collaboration with Bristol Myers and Japanese pharmaceutical companies.

  36. #36 The Very Reverend Battleaxe of Knowledge
    October 10, 2017

    Chris @ 33:

    …there is one other but its title eludes me (sorry).

    Might be The Lathe of Heaven.

    The Dispossessed is really an interesting piece of writing. It starts in the middle, and then the second chapter starts following Shevek’s life from the beginning. It goes on like that in alternating chapters, till at the end of the penultimate chapter, you’ve worked your way up to the opening. Then the last chapter finishes it up.

  37. #37 Epsilon
    'S pink out month dudes
    October 10, 2017

    Like seriously, am I the only person who thinks that the last two letters seem to be written by an illiterate 5-year old?

  38. #38 Chris
    October 10, 2017

    “Might be The Lathe of Heaven.”

    Yep, that is it.

  39. #39 Panacea
    October 10, 2017

    @Epsilon

    As Orac pointed out, English is not the writer’s first language.

    Though I do think that tone would shine through regardless of linguistics.

  40. #40 Epsilon
    That doesn't excuse it though.
    October 10, 2017

    @Panacea

    True. But I’d expect if you are in a position to hawk or defend a product, you’d at least get someone who can write letters better than a high schooler.

  41. #41 Panacea
    October 10, 2017

    If we were in Latvia, reading and speaking Latvian, I’m sure she could.

  42. #42 JP
    October 10, 2017

    @z:

    when you look at, e.g., ftorafur, now called tegafur. Correct me if I’m wrong, but it looks like it’s still used internationally: http://inventions.lza.lv/proto_e.php?id=36 There was even a collaboration with Bristol Myers and Japanese pharmaceutical companies.

    Correct as far as I know; I was reading about it in the comments section over at SBM, as it turns out.

    It is just that after dealing my kid’s health issues and such… the worlds presented by scifi authors are too mundane, and now have nothing to do with our reality.

    I dunno, a lot of sci-fi deals with important contemporary issues in interesting, if often not entirely overt, ways. I didn’t really read much sci-fi in grad school, but I still nerded out over Star Trek and stuff. (Easier to watch one TV episode once in a while than read a whole book for fun.)

    Right about now I could use an escape to another world, though.

  43. #43 Epsilon
    :/
    October 10, 2017

    Yeah… guess I’m just frustrated she’d defend a product that obviously doesn’t work.

    Those kinds of things just bug me so much. Why defend the indefensible? There are much better ways to spend such fervent energy than trying to fool peopl.

  44. #44 JP
    October 10, 2017

    Second part of my comment was meant for Chris.

  45. #45 Chris
    October 10, 2017

    I can understand. I guess it depends on how you want to escape. I kept finding plot holes in some books, and frankly I was disappointed with LeGuin’s later work. I now mostly read biographies and history (esp. of math and science). But I recognize I am not quite on the norm.

    I do enjoy watching science fiction and some scary stuff.

  46. #46 JP
    October 10, 2017

    @Chris:

    Oh, I switched to reading mainly history (Howard Zinn et al) and political stuff (Noam Chomsky, Emma Goldman, Marx) when I was 15 or so. And pop science. Never read a lot of biographies though. Like maybe Kurt Cobain and Jung or something. It took Dostoevsky to bring me back into fiction, and eventually I got hooked on poetry.

    Lately I’ve been reading fairly heavy stuff on, like, institutional racism and American militarism and the like. I did pick up a couple of fun stupid books from the library – Randall Monroe’s Thing Explainer and The Brick Bible.

    Not only do I have my own life stuff going on, politics and current events have been getting me super down. I think I need a break.

  47. #47 Chris
    October 10, 2017

    My most recent biographies were two by John Elder Robison. He is an autism advocate who dropped out of school to create light/smoke effects for Kiss. He then went on to other adventures like dealing with a teenager who liked chemistry, and who was tried for “bomb making” by an idiot political hack.

    It has a bit of humor and hand slapping on the forehead.

  48. #48 Panacea
    October 10, 2017

    Epsilon: When the question is “why do they” or “why don’t they” the answer is always the same: Money.

    As the Fat Man said in House of God: there’s money in shit.

  49. #49 Epsilon
    October 10, 2017

    And that’s part of what is so frustrating about it. It’s all about them. Nobody else matters as long as their pockets are lined and they aren’t in trouble. It’s disgusting, and it’s even worse that a blind eye is turned to it. That it’s “acceptable behavior” to some.

    And you feel helpless to stop it, because behind these people are companies ready to bend and twist the truth and the law, and to ruin the lives of good people, all to keep their operation running.

  50. #50 Panacea
    October 11, 2017

    It’s very frustrating to me when I see patients who could be helped by modern medicine go for quackery. I see this mostly with vaccination, which is why it’s a soapbox issue for me.

    I’ve had some success in convincing vaccine hesitant people who are open to being taught. The anti vax are a waste of time. But if I can convince even one person who is simply unsure because of all the competing information and misinformation, that’s worth it.

  51. #51 Politicalguineapig
    October 11, 2017

    Rich Bly: “I think the US is headed towards a Balkan type culture where every group is against ever other group.”

    “Headed towards?” Isn’t that the way the US has always been?

    Chris: It is just that after dealing my kid’s health issues and such… the worlds presented by scifi authors are too mundane, and now have nothing to do with our reality.

    Seconded. I swear health insurance is a dark art.

    JP: If you’re looking for something new to read, I highly recommend Becky Chambers’ books, A Long Way to a Small Angry Planet and A Closed and Common Orbit. (Make sure you clear out a space in your schedule; you’re not going to want to put them down.)

    Also, Ann Leckie’s Ancillary series. She’s got a new one too, Provenance. And I don’t know if you’ve heard of City of Stairs?

  52. #52 MI Dawn
    October 11, 2017

    @PGP: “…health insurance is a dark art.”

    As someone who works for health insurance (fortunately, one of the very rare non-profits), I like to tell people it’s like a menu. You have the prix fixe meal, the a la cart menu, and just to make things interesting, the State and Federal governments put stuff on your plate that you must eat, even if you don’t want to. (Not that that is a BAD thing, but some people complain about State and Federal requirements).

    And, of course, the more you eat, the more it costs. It’s also a lot easier to get a lot of meals for a negotiated price than feed your family on your own.

    Then there are the covered items, investigational and cosmetic procedures most (if not all) health insurances won’t voluntarily cover, fraud,waste, abuse…

    Even at my job, I advocate for universal healthcare, which seems further and further away with President Cheeto at the helm.

  53. #53 Politicalguineapig
    October 11, 2017

    MIDawn: Uh, no, it’s not like a menu at all. Menus usually tell you what things cost, upfront.

    Restuarants don’t have mysterious charges that are added onto the bill, nor do they have networks,where somethings are available and others are not,(and as a fun bonus, they won’t tell you what those things are) and the waiter/waitress can’t refuse to give you a dish on the menu because it violates their religion.

    (Jewish delis and halal restaurants don’t offer, say pork in the first place, but the case I’m referring to would be like a Catholic waiter/waitress refusing to let customers have their meat dishes because it was a Lenten Friday.)

    Most everything is ‘cosmetic’ I notice, because then the insurance can refuse to cover it. And covered items..well, that’s a nice fiction.

    Universal healthcare would be nice, but it won’t happen in my lifetime, and probably never in the US.

  54. #54 JP
    October 11, 2017

    @PGP:

    Thanks for the book recommendations! My schedule is generally pretty open, except for various chores and some translating. Today and tomorrow I do need to buckle down and finish a chapter before I go to the coast for a few days.

    Re: single payer, you never know. It is starting to catch on with the Dems (whatever you want to say about Bernie Sanders, he did shift the Overton window at least a little to the left.

    And it is very popular with the kids these days, as is the DSA, which I recently joined. (Was finally convinced after Fetonte quit; also they have a Communist Caucus and a Libertarian Socialist Caucus.) “Socialism” is not quite the dirty word it once was, at least amongst a certain, ahem, generation.

  55. #55 Politicalguineapig
    October 11, 2017

    Oh, you’re welcome. Before I forget, you might also like Our Lady of the Ice; it’s basically a hybrid of a noir film and classic science fiction. I like any excuse to support authors.

    Well, as far as that goes, the problem is there aren’t enough young people who pay attention. And have any kind of political savvy or pull. Most young men seem to enjoy being on the far right, I suppose it’s easier than trying to be a decent person.

    The Dems..well, I don’t have a lot of hope for my party, honestly. They muff it every time. I still support them, but it’s like supporting the home town team that always loses. I really don’t buy the ‘Overton Window” shift, as it seems to have shifted way to the right.

  56. #56 JP
    October 11, 2017

    @PGP:

    Oh, I don’t know, I know plenty of young people who pay attention, men, women, and non-binary folks. If anything I would say the “millennials” are more politically aware and active than their parents, and they are increasingly swelling the ranks of the Left. Anecdotally, all of the real @sshole right wingers I know are getting old.

    Sure, the alt right has its appeal to young men. But at some point they’re going to have to choose between the alt-right and ever getting laid.

    Maybe I should have said “shifting the Overton window among Democrats.” It wasn’t long ago that they were all shouting that single payer will never happen. I might have more respect for the party if they weren’t constantly punching left, but at this point I have left and joined the Socialist Party USA. (We will see who I actually vote for in coming elections.)

  57. #57 Denice Walter
    October 11, 2017

    I have to chime in about Le Guin:

    Believe it or not, I’m not much of a sci fi reader or movie goer
    BUT I do absolutely love a few books and movies/ shows** – some by Vonnegut and Le Guin – especially The Lathe of Heaven and The Dispossessed. I think that JP would like the latter LOTS

    It’s about social systems, politics, roles and mores more than anything other worldly although it’s that too I suppose.
    I consider some novels like Brave New World, 1984, sci fi,

    **. the first two Star Wars, 2001, Close Encounters, a 1990s dystopian epic – Strange Days IIRC. also TV – Hitchhiker’s Guide. Dr Who

  58. #58 Politicalguineapig
    October 11, 2017

    JP: I think most of the angry young men like being angry and obnoxious more than they like sex. Although, locally, we’ve had several cases of Nazis being identified and ousted from jobs. The local metal/punk community is pretty serious about the no-Nazi thing.

    I think the opposition among democrats to singlepayer was a matter of practicalities- most churches don’t like health insurance and very few people even thought of singlepayer until recently. Also, there’s the matter of two entire regions being opposed to health care in any form.

    Oddly, even most of the oldsters I know don’t like Trump. One of my uncles fits pretty much every demographic of Trump’s voters and he loathes the guy. (Weirdly, the uncle that was in the Peace Corps and actually sponsored a guy for citizenship just loves Trump. I can’t decide if it’s early dementia or what.)

    Frankly, I’m tempted to join the wobblies myself. Locally, I voted Green, because we had a great guy on the city council, but I’m not in his district anymore.

  59. #59 JP
    October 11, 2017

    @PGP:

    I was going to join the IWW too, but the dues are a bit steep for me; also I’m not going to be organizing a workplace any time soon. But i have always admired them, I know people with them, and I consider myself a fellow traveler.

    Solidarity, comrade.

  60. #60 Politicalguineapig
    October 11, 2017

    I didn’t know they charged. Hmm. I really like most of the various socialist ideas, but I’m afraid I can’t get past the concept that humans do not work that way. We aren’t a cooperative species.

  61. #61 JP
    October 11, 2017

    Many scientists would disagree with the idea that we are not a cooperative species.

    Anyway, yeah, the IWW is literally a Union, so there are union dues. I paid a small (low income) annual thing when i joined the DSA.

  62. #62 Politicalguineapig
    October 12, 2017

    Utopians, mainly. Humans are wired to be nasty to each other.

    Yeah, I’d somehow forgotten that the Wobblies were a union. Makes sense.

  63. #63 JP
    October 12, 2017

    I am generally not nasty to other people (I have been, basically while paranoid), and I think I am human, although I feel subhuman most of the time. My friends and, well, most of my family are not nasty to other people.

    I doubt you are nasty to other people, except perhaps trolls, when it is deserved.

  64. #64 JP
    October 12, 2017

    Also, you should join the wobblies. The union dies for someone who makes less than two grand are eleven bucks a month, but they don’t have a level below that. It’s still a little much for me; I need to buy, like, socks and cat food and stuff, and I suppose a little beer. (OK, that is not technically a need.)

  65. #65 herr doktor bimler
    October 12, 2017

    We aren’t a cooperative species.

    I’m with Koestler on this: part of the species’ problem is being too cooperative, for all the wrong causes. People form mobs and the blood starts flowing.

  66. #66 Politicalguineapig
    October 12, 2017

    JP: Aw, thanks. I try to be polite and nice in real life, simply because it makes things smoother all around. I try to save my wrath for things that deserve it- like automated phone systems or trolls.

    I think joining them will have to wait a little. I’m gonna need a steady cash flow.
    Hdb: You might be right.

  67. #67 Politicalguineapig
    October 12, 2017

    JP: As far as being human goes, you’re a better human than a whole lot of people. Please keep that in mind.

  68. #68 shay simmons
    October 12, 2017

    most churches don’t like health insurance

    Um…what?

  69. #69 Narad
    October 12, 2017

    OK, that is not technically a need.

    I’d rank it ahead of socks.

  70. #70 Narad
    October 12, 2017

    I paid a small (low income) annual thing when i joined the DSA.

    Well, at least it wasn’t the Sparts.

  71. #72 JP
    October 12, 2017

    “Well, at least it wasn’t the Sparts.”

    Oh, heavens no. for one thing I am not a Marxist Leninist in the first place, even disregarding their other problems. Marx has a lot to offer, but also a lot of problems; his ideas about the “lumpenproletariat” for one thing. I prefer Kropotkin, just as one example.

    @Johnny:

    Is that supposed to make me like them less? Because it has had the opposite effect.

  72. #73 Narad
    October 12, 2017

    The IWW? I’ve heard of them.

    Sadly, the union-made T-shirts that I’ve gotten from them have been of erratic quality. And sizing. Lay your hands on a copy of the Rebel Voices CD if you can, though. It’s only boring in spots, as compared to the shirts.

  73. #74 Narad
    October 12, 2017

    ^ “compared with,” dammit.

  74. #75 JP
    October 12, 2017

    Rebel Voices is on Apple Music, as it turns out. Listening now.

  75. #76 JP
    October 12, 2017

    We always used to sing “The Preacher and the Slave” at Sara F’s parties in Ann Arbor. (Along with Solidarity Forever (which we always sang at GEO meetings as well), along with Yiddish labor songs. She is a big fan of my singing voice and always asks on the phone if I have been singing. Now that my left hand is mostly better, I might try picking up the guitar again.

  76. #77 JustaTech
    October 12, 2017

    I’ll rec some books:
    John Scalzi writes great space opera (funny but also deep and good female characters)
    Too Like the Lighting by Ada Palmer (disclosure, friend from high school) which takes a super enlightenment approach to the future. (Utopians are one group in a stateless society.)

  77. #78 JP
    October 15, 2017

    Thanks for the book recs, all. I picked up a copy of The Dispossessed and I look forward to reading it once I am home with some peace and quiet. Probably in fits and starts.

    My younger nephew is learning to talk but has not entirely gotten the hang of it yet, and he gets mad when he is not understood. My brother gets grumpy with the kids but it is entirely ineffectual and only adds to the general chaos.

    Walking on the beach is very nice.

  78. #79 JP
    October 15, 2017

    When I am watching the boys I am “strict” but not angry or grumpy, and I find that it works. But who am I to say anything.