Just do it!

https://phage.directory/capsid/raising-awareness-among-doctors



Well, it has come to this. I really will just go with a friend and go in search of Bacteriophages and film the experience and see who we meet along the way. February 2020 (whoops, I had incorrectly typed 2019 before) seems a good time!

All my efforts trying to organise a planned visit/treatment have been in vain, so I will invite one of my besties to come along with me and fly to Europe in search of a cure.

The reason it is difficult is that there are many people desperate to try phage therapy and the three most famous centres of phage research and treatment are overwhelmed with requests from foreign patients. The world is not short of sick people affected by antibiotic-resistant infections, which is exactly why the World  Health Organisation is so concerned about it; https://www.who.int/antimicrobial-resistance/global-action-plan/en/

I would have thought myself to be a perfect patient for scientists and doctors wishing to treat people with antibiotic-resistant infections. I am relatively healthy, mobile, have an infection that is easily accessible (through inhalation), easily monitored, and am not likely to die overnight from my infection and have a good chance of returning for follow up treatment or testing. Plus I am guaranteed to culture other antibiotic-resistant infections regularly over time giving treatment centres a reliable guinea pig that is known to them which surely has its advantages. But, there are many people in the world with Cystic Fibrosis like me.

Why do I still want to go with no guarantee for treatment? I will film and document my search for treatment and on my return discuss with doctors and scientists and prepare footage and material for the documentary.  What's in it for me? I want phage therapy to be available to me just like medicinal marihuana, and raising awareness about it is very important. Even if I were to be successfully treated there is a great chance I will be reinfected with the same or other strains of antibiotic-resistant lung infection within months. Hopefully, the next infection I get can be treated more effectively with standard antibiotic treatment. What makes me survive this hardy strain of pseudomonas aeruginosa is my alternative health supplements like Indrepta C: http://cysticfibrosis.com/indrepta-c-now-available-nonsense-mutations/ which helps me tremendously, and my adherence to what I believe to be a healthy and sustainable diet and lifestyle.

To cut the costs down I think it is best to just do the simplest thing, and that is to fly to Wroclaw in Poland, see how phages are used in practice by visiting a  few pharmacies, maybe see a doctor, and visit the Ludwik Hirszfeld institute, and then travel by rental car to Krakow in Poland where due to the enormous demand for phage therapy the L.Hirszfeld Institute recently opened an experimental phage therapy branch as well. Next stop is Brussels where phage therapy has been legally allowed as a treatment option where I will visit a doctor and seek help for my current infection and try visit the Queen Astrid Military Hospital where the national phage library is maintained.

On my return, I will discuss my findings with doctors and relevant scientists and doctors at the Royal Hobart Hospital, Monash University and the University of Tasmania. Then I will seek professional help in putting the documentary together!

Any feedback or suggestions always welcome by emailing me at suggestions@coughing4cf.com !


GREAT SHORT VIDEOS TO WATCH

• https://www.yalemedicine.org/stories/phage-therapy/ See Profesor J.Koff and B.Chan in action, the team I had the biggest hope for to help me.
• https://youtu.be/YI3tsmFsrOg How phages work...

Interesting new articles;

• https://phage.directory/capsid/raising-awareness-among-doctors
• Here is a typical case where phage therapy was started when the CF patient was in a critical condition, as this is the point where experimental methods can be used if legal permission is obtained in time. Often this is too late, here it was just in time. I like to be treated before I get to a critical stage: https://cysticfibrosisnewstoday.com/2019/06/04/armatas-phage-therapy-resolves-multidrug-resistant-pseudomonas-airway-infections-case-report/

To help with the project please show your support by donating to the fundraiser at https://www.gofundme.com/f/phage-or-fail-with-antibiotics. 

New Plan for 2020

Finally! Another update. I am sure you are all worried about what is happening with this documentary...

Appendicitis!

I had an Appendicitis Scare in the past few months. Because my lungs are so sensitive/awkward an appendectomy was not performed. Instead, I was first admitted to a regional hospital but eventually went for admission at the Canberra Hospital.  The final outcome; I was twice treated with large doses of IV antibiotics and the appendicitis is gone for now. It is expected to come back, which is totally normal, so they wish for my gut to fully recover and get over the infection before removing it later this year or in January through a laparoscopic procedure.  This means full intubation will not be required if all goes to plan.

I was hoping this situation would perhaps qualify for an emergency TGA approval to improve my lungs with Phage Therapy before the procedure, but due to hesitance of my health providers to fully commit themselves to phage therapy, and the dim outlook of getting TGA approval by the medicos involved, this opportunity has now kind of passed.

NEW PLAN

But we NEVER GIVE UP! Even though the preferred option of Yale treating me for the documentary seems to have gone out the window, I have formulated a new plan:

In Search of a Phage - The fight against Antibiotic Resistant Infections gets on the road.

Early

In early 2020 I hope to travel to Tbilisi in Georgia. I will go to a pharmacy and ask for a phage preparation to treat my Pseudomonas Aeruginosa lung infection. They may or may not give me something suitable. Chances are they will refer me to the Eliava Institute of Bacteriophages or to a local doctor. I will see what happens and go with the flow for a week, during which I may also visit this legendary institute where the world's largest phage library exists.

Next, I will travel to Wroclaw in Poland, where the next most famous bacteriophage institute is, the Hirszfeld Institute of Immunology and Experimental Therapy.
Here I will do the same, spend a week or so in search of Phage treatment.

Jean-Paul Pirnay
Qn. Astrid Military Hospital

And then my last destination is in Brussels where the 'Koningin Astrid Military Hospital' has made leaps and bounds in phage therapy. In Belgium they now allow Phage therapy. My strategy here is to go to a GP and explain what I have done to get rid of my pseudomonas infection. They will do a sputum test and see what is happening with my infection and will prescribe a  magistral preparation and ensure that the infection will definitely be treated and I can go home with an ongoing treatment plan.

I now envisage the documentary as follows:

• Start with my CF team explaining my infection (futile hospitalisation and ABX treatments)
• Switch to scientists at the University of Tasmania and Monash University explaining bacteriophages a bit better*.
• Get on the road and in Georgia hear a little about the history of phages* before proceeding to me making an attempt to get treated with phages. 
• Travel to Poland where we will hear about the successful application of phages in WWII on the battlefield and why there was perhaps not a 100% success rate there, hear how many people visit the Ludwik Hirszfeld Institute from abroad, and briefly discuss why Phage therapy is not accepted in other countries***.
• Travel to Brussels where we will speak to scientists and medical professionals, such as Jean-Paul Pimay pictured above, at the Queen Astrid  Hospital who will explain why it is now permitted in Belgium and how it was approved for public use, and explain why in Australia and other countries it is still not accepted.
• Back in Tasmania I will see my CF clinic, get a sputum test and lung function test and ask why we can not do this in Australia yet and when will it be possible. With my daring trip, taking the phage preparations in foreign countries, not one side effect was noted or warned against,. It was much cheaper compared to any hospitalisation for IV antibiotics and there are no serious side-effects noted over the 80+ years of use in  Eastern Europe or in the rest of the world over the last decade or more.

Hopefully, this documentary will make a big difference to the acceptance of Phages.

Thank you for your patience, hanging in there with me, and please pass to anyone who may be battling Antibiotic-Resistant infections!

Remember the Fundraiser to fund the Documentary is here: https://www.gofundme.com/f/phage-or-fail-with-antibiotics


* "Since time immemorial, phages—the viral parasites of bacteria—have been protecting Earth’s biosphere against bacterial overgrowth. Today, phages could help address the antibiotic resistance crisis that affects all of society"... 

** Discovered early 1900s and was replaced by the easier to use Antibiotics except in Russia and Eastbloc countries where Antibiotics were hard to get, hence phage therapy successfully continued there till today. 

*** Phage therapy does not fit the western clinical trial model as billions of phages exist naturally and each one is only effective against a very specific bacteria. Clinical trials will not work for trials that demand one medicine to be tested on multiple patients. Phages are a tailor-made (often per case) medicine.

Waiting on FDA approval

Hi everyone,

We are anxiously awaiting word from the FDA to approve my bacteriophage treatment at Yale.

Because phage therapy is still not officially cleared as an official treatment on humans in the western world, use of them must be applied for before researchers or doctors can use them on a patient, and that includes research.

Just to recap. Phages are the millions of natural enemies of bacteria. They are viruses that cull bacteria populations. If it wasn't for bacteriophages our sewers and compost bins would be overflowing with green ooze :)  Like any overpopulation, disease/viruses ensure population numbers are kept in check.

Bacteriophages are highly specific (hence minimal side-effects), and one phage cocktail that may kill the pseudomonas infection in my lung, but not the pseudomonas infection in someone else's lung which may require another combination of phages because the bacteria came from another source, and is, therefore, a different genotype.  Because phages are all unique they cannot easily be classified as a medicine because they really are a family of bacterial agents. For every patient, a unique phage cocktail has to be prepared from a Phage Bank. Exceptions are of course if it is the same bacteria that has infected many, say with a hospital infection.

With phages not exactly qualifying as medicine and one phage cocktail not curing all infections as similar as they may seem, it is very difficult to conduct clinical trials where historically one medicine is tested on a number of patients. Even if you had a collection of 30 people with Cystic Fibrosis and with Pseudomonas lung infections, each infection is likely a different genotype and requires a  different phage cocktail to treat. Biochemists test each person's bacteria with a range of phages and narrow down phages that are effective specific to each case. As bacteria mutate and gain resistance, the phage cocktail needs adjusting periodically. It is not one pill for all solution. It is a tailored treatment. Companies like AmpliPhi in the USA and others are working on creating more universally applicable cocktails which may get annual 'updates' just like annual flu shots do. Other researchers are trying to engineer artificial phages to gain optimal results for more infections.

Just a reminder, bacteriophages are not a recent invention,...Cocktails of phages were used therapeutically in Europe and the United States during the early 1900s pre-antibiotic era, used in the fight against the bubonic plague in Southeast Asia, dysentery in France, and cholera in India. Phage use is still prevalent in Russia and Central and Eastern Europe today. In the West, phage therapy was abandoned after broad-spectrum antibiotics came on the scene.

https://www.nature.com/articles/s41587-019-0133-z

Lets hope I get the call soon so that I will still be healthy enough to fly the 15000 kilometres to the USA! I would hate to have another 2 week hospitalisation to get pumped full of antibiotics which hardly addresses my Pseudomonas aeruginosa infection and which are starting to give me nasty side-effects!

As soon as I get the call with a date I will contact the press and we will need to scramble for the $$$ to make up the target figure required for the documentary!

If you hear of anyone who has antibiotic-resistant infections, Cystic Fibrosis or anyone who may be interested please pass this website to them!

Thanks for your patience and support!

Walter----

If you have anything to do with Microbiology in Australia you would have seen the March edition of Microbiology Australia, a CSIRO publication. They have dedicated their entire quarterly magazine to Bacteriophages!

Have a read if you are interested! http://microbiology.publish.csiro.au/nid/206/issue/9721.htm

Too much for most people to read, but I will refer to its content over the next few weeks on my Facebook page www.facebook.com/Coughing4Cf and on the blog https://www.coughing4cf.com.

One paragraph from the Microbiology Australia magazine;

Phages are natural organisms, arguably the most abundant life-form on Earth. They have evolved closely and dynamically with their bacterial host and are therefore specific and effective in selectively eliminating their target. They have a low environmental impact and have shown to have no serious side effects on bystander microorganisms. They are self-replicating in the presence of their target, facilitating dosing regimens, and have been successfully employed to treat even MDR infections, Only recently (2006) the FDA has recognised the designation of phages as ‘generally regarded as safe’, allowing for the use of phage in clinical practice and opening the road towards the implementation of bona fide clinical trials.

Complete article here: http://microbiology.publish.csiro.au/?paper=MA19005

We now have an incredible film producer tentatively working with me ( www.deansaffron.com) to make the documentary a reality, but I do need more finance to help make this a reality. Once we have a finite date with Yale I will engage the media and hopefully, we can then reach our goal! In the meantime keep on drumming up interested parties, and ask your friends to support with small donations so they can stay up to date with progress and experience phage therapy through my journey!

-----------------------------------
REMEMBER WE NEED $$$ TO MAKE THIS DOCUMENTARY of my treatment so that other people learn about Bacteriophages and recognise their potential in the fight against antibiotic-resistant infections. PHAGE or FAIL. I invite you to be part of this revolution and donate :)  In return, you will get regular updates about my journey/lesson and you will get to see the 15-minute documentary once completed!  CLICK HERE: www.gofundme.com/phage-or-fail-with-antibiotics

Phages don't fit traditional clinical trial format

Antibiotics are failing us and bacteriophages are there waiting to be used.

With decades of proven effectiveness against bacteria, as used in WWI and WWII and now continuing to save lives in a few countries where clinical trials are not required why can't we get clinical trials that allow it? Because phages are personalised medicine, and clinical trial formats do not fit the mould for it. Belgium, USA, Poland and a few other countries now allow it, most under special rules and regulations  It is time we all learn about phages' effectiveness in our fight against antibiotic-resistant bacteria!

More info: www.scienceabc.com/…/what-is-bacteriophage-biology-therapy.…

A CSIRO publication, Micro Biology Australia, has dedicated their March 2019 issue to Bacteriophages, this is how important phages are in today's world.

So what is really blocking them from being used? 

Bacteriophages are not currently classified in medicinal legislation since they are neither living nor chemical agents. Therefore, it is complicated to regulate and perform clinical trials and commercialisation. To ensure the efficiency of phage preparations, their effectiveness and host range towards currently circulating pathogenic strains must be monitored. This might explain why the phage preparations approved in the Russian Federation and Georgia are not static but are continuously updated to target newly emerging pathogenic strains. Legislation to allow these updates is necessary to circumvent repeated registration procedures.  

The Belgian Minister of Health has formally acknowledged that it is difficult to define the status of therapeutic phage preparations: should they be considered as industrially-prepared medicinal products (subjected to constraints related to marketing authorisation) or as magistral preparations (prepared in pharmacies’ officina). Magistral preparations (compounded prescription drug products in the US) are made by a pharmacist from the constituent ingredients to meet the specific patient needs. On 26 October 2016, it was formally agreed that natural bacteriophages and their products, which are not fully compliant with the European Directive requirements for medicinal products for human use and for which there is no monograph in an official pharmacopoeia can be processed by a pharmacist as raw materials (active ingredients) in magistral preparations, providing compliance to several logical provisions.

What this means in simpler terms; Clinical trials require ONE preparation to be tested. This is not how phage therapy works. There are millions of bacteriophages and a lab determines which ones are put into the preparation on an individual basis. Even if you had 30 burn infections it is highly unlikely the same phage preparation would be effective for all, and even during treatment the infection needs regular monitoring and phage preparations may need adjusting. Current clinical standards do not allow for any such variations!

Examples of occasions when the same phage cocktail would be effective is in a hospital where a hospital-acquired infection is spreading to patients. The same phage preparation can be given to all suspected patients, or in a nursing home where gastro is doing the rounds, a single phage preparation can clear most cases without causing harm to patients. Keep in mind that each time there is an outbreak typically a new preparation is required. But this is what we want, we want a pharmacy to be able to make the preparations as is now happening in Belgium; Magistral preparations (compounded prescription drug products in the US)!!

Progress Everywhere

Time for another update!

DEAN SAFFRON, a friend in Queensland, who has been involved with CF projects in which I have been part of, has offered to help me make a 15 minute documentary of my journey into Phage Therapy! Dean, https://www.deansaffron.com/, is an accomplished and award-winning photographer and filmmaker and has offered his time and skills for a minimal cost. This is the first concrete offer I have had and one I am super happy with. We do need to raise significantly more $$$ to make it a reality, but we have figures on the table and complete with Dean's travel cost we are looking at needing about $10k, which is half my estimate of $20k. Currently, we are at the $4k mark.

Dean's latest successes;
"Salt of the Earth " Winner Best Short Film , Anglet, France.
"Still Swell at 85 " Winner Best International Short Film London.
"Still Swell at 85 " Winner Best Short Film ASMF, Australia"
"The Spokesman" 2nd prize Velo Best Short Film Berlin, Germany.
"The Spokesman" The Auteur Award Best Short Film , Australia
"Phage or Fail" Winner Best Short .......   :)

One other issue I am pleased to have solved was that a standard USA Tourism B2 tourist visa, or in our case an ESTA visa exemption, covers medical treatment: https://travel.state.gov/content/travel/en/us-visas/tourism-visit/visitor.html.

As soon as we have a definite date for phage therapy at Yale University I will engage the press and hope to attract more funding.

CONFERENCE CALL with YALE! Last week key players from Yale University, their Cystic Fibrosis team, Dr. Benjamin Chan, myself, some of my  Tasmanian CF team, and my wonderful GP Jane Cooper from the Don Medical Clinic had a conference call detailing the process. Discussed were issues with initial treatment logistics, ongoing care, mailing of further phages, repeat visits, current status quo of bacteriophage treatment wrt Cystic Fibrosis, possible ramifications for a future lung transplant and if the phage treatment will affect my current treatment plan. The specialists involved in my care still have no time or interest in this treatment because it is seen as experimental and not permitted on humans in Australia YET.

IT IS UP TO US TO CHANGE THIS VIEW in Australia. The USA and Europe are slowly adopting phage therapy despite the usual required clinical guidelines for its use have not been completed, similar to those for medicinal marijuana. With Marijuana, there are two hurdles, the illegal status as a drug as well as the lack of substantial pharmaceutical profits. Phage therapy only has the latter, which is perhaps why the world is slowly adopting phage therapy quicker than we are medicinal use of marijuana.

Emily's Entourage

'Emily’s Entourage' accelerates research and drug development for nonsense mutations of Cystic Fibrosis and awards grants to research. A significant amount has been awarded to Dr. Benjamin Chan from Yale for research on Eliminating Resistance in Multi-Drug-Resistant Bacteria Using Phage Therapy.  This is where I am going for treatment!

TIME MAGAZINE article:
http://time.com/5068513/superbugs-are-nearly-impossible-to-fight/

quote:

Phage therapy has some unique benefits over antibiotics. For one, bacteriophages can be found everywhere on earth, even in sewage. Second, it attacks only the targeted bacteria, not the so-called good bugs in the host. Third, it can be done quickly: scientists can create a phage cocktail and provide it to patients within 48 hours of a superbug-infection diagnosis in some cases. And even though bacteria can become resistant to phage, there are an infinite number of strains of the viruses–not so with antibiotics. During Patterson’s treatment, the bacteria grew resistant to his initial phages, but the doctors were able to tweak the treatment with new strains until he cleared the infection.

FORBES MAGAZINE
(May 2019);
https://www.forbes.com/sites/madhukarpai/2019/05/08/fighting-fire-with-fire-can-we-kill-super-resistant-mycobacteria-with-viruses/#7236157556e5

quote:

In general, the field of phage therapy has to evolve from a series of case reports of compassionate use among desperately ill patients, to an evidence-base that demonstrates that phage therapy is safe, effective, and can become a part of routine clinical practice. Thankfully, such randomized trials are emerging. More are needed, and need to be funded.

REMEMBER OUR FUNDRAISING PAGE IS HERE:
https://www.gofundme.com/phage-or-fail-with-antibiotics

Clinical Trials for Phage Therapy!!

GREAT INTRO VIDEO in case you do not know about Bacteriophages. Watch this little 6-minute presentation, and pay extra attention at the 5-minute mark: https://youtu.be/YI3tsmFsrOg

My chronic lung infection...

UPDATE ON MY PHAGE THERAPY:

We are now at the stage where my GP and my Tasmanian Adult CF Clinic, Dr. Benjamin Chan (the researcher intending to treat me) and the director of the Yale University Adult Cystic Fibrosis Program are all getting together to formulate a plan.

I have also been talking to a Melbourne Film Producer who is keen to work out the logistics to make a documentary about the experience, and how to raise enough funds to make it possible. Please share our fundraiser: https://gofundme.com/manage/phage-or-fail-with-antibiotics. This filmmaker has also worked with Coen Ashton, a young man with Cystic Fibrosis who was a brilliant motivator and strong advocate for Organ Donations, a recipient of transplanted lungs himself but unfortunately succumbed to kidney failure as a result of the strong pharmaceuticals he received during his short life.

And as for my health, I just spend 10 days in the Royal Hobart Hospital getting strong IV Antibiotic treatment for my current lung infection which rendered my lung function to be 31% of expected (FEV1) for my age. A very worrying figure. It has since recovered to 39% and I am now on home IVs in Devonport. All these antibiotics take a toll on my organs, unlike Phage Therapy which only targets one bacteria.

I expect to go to Yale in June... at this stage.

_____________________________
NOW LETS TALK PHAGE UPDATE!

Clinical Trials

To date I have been led to believe that because there is little money to be made by pharmaceutical companies there have been no clinical trials organised for phage therapy.  Who would pay for clinical trials of acupuncture, for instance. A needle maker who sells $300 acupuncture needle kits? There just isn't the money to justify the expense of a clinical trial involving dozens of scientists and lab workers, patients,...  And phages are also quite cheap.

BUT, it appears I was wrong! Was reading Time Magazine;  http://time.com/5068513/superbugs-are-nearly-impossible-to-fight/ ;

In 2018, two small biotech companies in the U.S.–AmpliPhi Biosciences and Adaptive Phage Therapeutics (APT)–will launch clinical trials that will attempt to answer some of the key questions about phage.

This to me indicates that there is movement in the works!

In fact after checking up on AmpliPhi (pronounce Amplifie!) I found that a Phase I-II clinical trial European Research & Development (R&D) Project funded by the European Commission had already been completed; Project  PHAGOBURN. It involved E-Coli and Pseudomonas Aeruginosa burn wound infections. In its Executive Summary it said:

In the context of a worldwide growing antibiotic resistance threat, notably the emergence of multi-drug resistant bacterial strains, PhagoBurn was launched to evaluate the clinical potential of bacteriophages (phages) as a novel and innovative strategy to fight this critical issue. Launched in 2013 and completed in 2017, PhagoBurn was the world first prospective multicentric, randomised, single blind and controlled clinical trial of phage therapy ever performed according to both Good Manufacturing (GMP) and Good Clinical Practices (GCP).

And the FDA in the USA has now also approved two other Clinical Trials which target Pseudomonas lung infections: https://cysticfibrosisnewstoday.com/2018/09/20/fda-oks-2-trials-investigational-ab-pa01-targeting-pseudomonas-aeruginosa/:

• A Phase 1/2 randomized, controlled clinical trial to evaluate the safety and efficacy of AB-PA01, administered intravenously in approximately 100 patients with hospital-acquired and ventilator-associated pneumonia (HAP/VAP) due to Pseudomonas aeruginosa. 
• A Phase 1/2 randomized, controlled clinical trial as above, in approximately 100 patients with Pseudomonas Aeruginosa bacteremia. 

"Pseudomonas aeruginosa is not only a challenging infection to treat, but one that represents a serious threat to the cystic fibrosis community as well as to lung transplant patients,”

___________________________
The easiest way to get bacteriophage treatment to infections is where the infections are easily accessible, ie. on the skin or in the lungs. Infections found in burn victims are much more numerous than lung infections and burn infections tend to be more homogenous infections whereas lungs tend to have multiple infections. This is why burn-related skin infections are most ideal for clinical trials.

Phage Therapy Centre in San Diego, USA.

Despite many countries not ready for human phage applications, with human trials supposedly 20 years away, in the USA patients now seeking phage therapy can submit an Emergency Investigational New Drug (eIND) application with the FDA. This process allows for use of 'as yet unapproved treatments' on a case-by-case basis. On this basis, IPATH Phage Centre was created in San Diego:  Center for Innovative Phage Applications and Therapeutics.) to treat patients with multidrug-resistant infections.

The aim of IPATH will be to make phage therapy more widely available as a clinical option for patients with life-threatening infections that aren't responding to antibiotics. Currently, IPATH is prioritizing serious multi-drug resistant bacterial infections that are associated with the following conditions: cystic fibrosis, complicated urinary tract infections, organ transplantation and implantable hardware (infected joints, pacemakers,...).

PLEASE DONATE!

So this concludes this update on my Phage Therapy mission!

Thank you again for your donation, and please spread the fundraiser so we can make a small documentary out of my experience going to Yale University for treatment of my Pseudomonas Aeruginosa lung infection, a very common infection for people living with Cystic Fibrosis:

https://www.gofundme.com/phage-or-fail-with-antibiotics
and follow me on https://www.facebook.com/Coughing4Cf

Urinology cures Cancer

image from https://www.frontiersin.org/articles/10.3389/fmicb.2016.01631/full
Modular Approach to Select Bacteriophages Targeting Pseudomonas aeruginosa for Their Application to Children Suffering With Cystic Fibrosis

Do a quick Google Search again to verify the above title. Tell me what websites you see. Recognise them? Probably not. Is this because no pharmaceutical company is willing to spend several million dollars into doing the clinical trials? Same can be said about Phage Therapy, but there is as much money for Pharmaceutical organisations as there is in Phage Therapy as there is in urinolgy or cannabis for that matter. But if you Google Bacteriophage with your favourite infection you will get credible websites covering its virtues.

In fact, just driving in my car someone alerted me to a radio program on phages, and I tuned in to listen: https://www.bbc.co.uk/programmes/w3cswvsm

Like most press coverages it was overall super positive and makes you scratch our head why we can't find a way to use phages in fighting infections that antibiotics have trouble with.

In the next week or so I am due to go into hospital to have a 'tune-up', tens of thousands of dollars will be thrown towards me to pump me full of antibiotics and get my lungs cleared a little, but only temporarily. In my analogy of rabbits in my carrot field, this is now akin to paying the army to come in with a battalion to shoot as many as they can. We all know the rabbits will be back within weeks of the battalion leaving. Rediscovering the calicivirus (that virtually stopped the rabbit plague and is still killing domestic rabbits today) is probably a better option.

At a nearby Film Festival in the mountains (Cradle Mountain Film Festival), where I was scouting for documentary makers willing to cover my experience with Phages at Yale University, I was at altitude, about 800m perhaps. I could hardly function. Parked next to the disabled spot at cradle Hotel I was exhausted by the time I got to the cafe inside. Trying to do my nebs and cough up a cup of phlegm too two hours that night as each and every step was torturous. It was too cold for my oxygen concentrator to work properly. I need to kill this pseudomonas infection in my lungs. And I am not the only one suffering. And people with Cystic Fibrosis are also not the only people suffering from such infections.

So anyway, the journalist on the radio explained how she went to the pharmacist and bought phage medicine over the counter. It was designed to kill the 3 most common bacteria circulating in the country that made people sick. Bacteria jump from host to host as you know, so it is quite normal for an infection in a group of people to be exactly the same. Hence an annual update of the phage medicine ensures it stays effective to the particular genotype of the bacteria. That is right, the phage will only kill the exact one genotype of the targeted bacteria. This means not one phage to kill just one bacteria, it has to be really specific. Hence phage therapy often falls under individualised medicine, where a phage is found for each individual case.

How about the annual flu injection. Every year there is a new cocktail of antivenin to combat the worst flues expected to dominate the country. Are millions of dollars and decades of clinical trials required to get them through the medical authorities to be allowed for human use? How do they get away with it? Why can't we do it with phages? Anyone who wants to get a flu shot can buy one, those who are at highest risk are given them for free.  Why? Because it is proven to work, keep flu numbers down and prevent epidemics. It is in the government's interest to keep us out of hospital and dying. When I walk in the street, go into a pharmacist or doctor surgery, a hospital, or a plane, I am afraid someone with a nasty bacteria infects me. They wouldn't infect healthy people, but my CF lungs most certainly will, and can cause me to be counting daisies within weeks. And yes, many with Cystic Fibrosis wear masks and keep distance, and all of us avoid crowds. I live in Tasmania where crowds are rare and fresh air is prevalent.

Take a hospital infection where a superbug has gone out of control infecting dozens and killing several patients, it is often just the one bacteria to blame. A bacteriophage can be isolated and given to all patients which will in most cases kill the infection without side effects. Of course, this presumption is just merely a presumption, but that is theoretically how bacteriophages work, they are highly targeted enemies of our enemies, they are our friends!

And is it just one bacteriophage that exists to kill that one particular infection? No, shock horror, it is more like real life biology where say us humans are able to get thousands of viruses that could harm or kill us without affecting our goldfish or hamster, as can rabbits get thousands of viruses without harming their fleas and other parasites, or us humans trying to grow carrots in the same fields these rabbits are dying of the various viruses they could potentially catch. Some viruses are more virulent than others. This means the microbiologists need to isolate a cocktail of effective phages for the bacteria they are targeting. It's not rocket science, but will take a lot of biochemists and lab workers to be employed. The alternative our capitalist society seems to prefer is to find a pharmaceutical solution that spends the same or more on a handful of CEOs and investors instead of creating employment for scientists! Win-win for Phages again.

In the Eliava Institue in Georgia, former Russia, 800 scientists used to work there to isolate and distribute phages for all of the USSR, today still 80 or so remain, to help treat people from their country and desperate visitors who come from overseas to seek treatment after the western system has failed for years.

Thank you for reading this far and if you enjoy these regular updates and are interested to see how I go in my quest for killing my Pseudomonas aeruginosa infection with Phage Therapy please share this page and my fundraiser with other people interested in fighting antibiotic resistance in our world! Donations are not for my travel or treatment, they are intended to cover film and media costs etc to let the world know about Bacteriophages.



--
Cheers,

Walter van Praag

Phage Therapy? Please explain again....

I decided to write an analogy of how I see phages, and how I explain it to other people.

Many people still think I am going to get cured, but really I am going for treatment that should be simple and available for anyone around the world, or at least doctors ought to have bacteriophage options in hospitals when treating infections that do not respond to traditional medicine.

So here is my analogy:

The RABBIT PLAGUES

I liken my lungs to a farmers field of rabbits. I cannot use my green paddock anymore as the rabbits eat everything and dig everything up. A little after European Settlers in Australia decided to release 24 rabbits this turned into a nationwide plague within 50 years.  Poisons used to kill the rabbits also killed farm animals and left dangerous residues on crops, and shooting, baiting and trapping seemed pointless. Like the bacteria growing in Cystic Fibrosis lungs, the usual methods of healthy diet, exercise etc is not enough to get rid of my 'rabbits' (infection), so 'poisons' are used; antibiotics. The poisons also affect good bacteria and cause harm, plus eventually, my rabbits don't even care about the poison and the poison is rendered useless. Like in my lungs, the 'rabbits' in the paddock have become very resistant to the rabbit poisons, like the bacterial infection in my lungs has become resistant to the antibiotics.

Now we all know that any overpopulation tends to get diseases, like too many fish in a fishbowl, too many chickens in a hatchery, pigs in a piggery, people in a hospital... or rabbits in a field. This led to excessive use of antibiotics to be used on animal farms to keep the populations healthy. This overuse also contributed to global bacterial infections becoming more resistant to antibiotics. Humans too have been squeezed full of antibiotics, with antibiotics being the most often prescribed medicine of the Century. This has led to more superbugs in society, bacteria that are resistant to most antibiotics.  

So why isn't our world covered in a bacterial ooze growing out of control? For the same reason, overpopulation is stopped by disease, which also happens on a bacterial level. Bacteria are also susceptible to viruses that kill them. Like most viruses, they generally do not travel across the 'species'. Antibiotics are very indiscriminate, affecting all species and all sorts of bacteria, but these natural bacteriophages, viruses, are highly targeted. Scientists found viruses that killed rabbits and isolated them. In Australia that controlled the rabbit numbers very effectively without affecting other species; the Calicivirus.

When people discovered that bacteria have viral enemies, bacteriophages (phage is the Greek word for kill) we started isolating them and using them to heal infections in humans. In the early 1900s this was revolutionary, but when antibiotics were invented in the 1930s phage research stopped as antibiotics could kill a range of bacteria, instead of looking for individual cures (phages) for specific bacterial infections. Many East Bloc countries did not have access to antibiotics and they continued using phage therapy, hence you can find phage-based medicine and prescriptions against common bacteria on pharmacy shelves in Poland, Russia, Georgia, etc. They have not stopped their research in phages, and have hundreds of academic studies and trials in half a dozen or more languages published over the past decades.

Slowly our Western Scientists are waking up to phages: www.phageguard.com. All they need to do is look in dirty places, places where a person with Cystic Fibrosis (or anyone for that matter) can easily contract lung infections; compost bins, soils, garbage tips, sewerages, polluted rivers...  There they can find the bacteria that might be causing my infection in great numbers. Great numbers also mean scientists (biochemists) can also find the bacteriophages killing them. Next, the scientists isolate these phages. They may find several phages for similar genotypes of the same bacteria, and they can formulate and administer tailored phage cocktail to infected people. In combination with antibiotics, this has had enormous success. Like the Calicivirus which killed the majority of rabbits (but not all!). Now bacteria can still become resistant to phages, but for now we have a hugely as yet untapped successful weapon against antibiotic-resistant bacteria, one that is totally underutilised in Western Society. Why aren't we using them more? 

If they are so good,... then why aren't pharmaceutical companies excited about this? Well, as was mentioned, these phages are not artificially synthesised or manufactured in a lab, they are found in nature within the city limits, and they merely need isolating. This means phages are very common and no patents can be claimed: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3821673; 

success of phage therapy may be hampered by a lack of investment support from large pharmaceutical companies, due to their narrow spectrum of activity in antibiotics, very large costs associated with clinical trials of the variety of phages needed, and regulatory requirements remaining unclear. Intellectual property is difficult to secure for therapeutic phage products for a variety of reasons, and patenting procedures vary widely between the US and the EU. Consequently, companies are more likely to invest in phage products for decontamination or veterinary use, rather than clinical use in humans....  

In Holland, a government official was recently claiming that human trials could be as far away as 20 years before being allowed to be trialled on human subjects in Holland, yet the European Medicines Agency has allowances for phage therapy treatment on humans. In response, the Dutch have submitted a 40,000 signature asking for an explanation of why they have to travel to Poland for phage therapy.

* in the USA the FDA approves phage therapy in individual cases where all conventional drugs have been tired and the situation is serious or life-threatening.
* in Belgium a 'magistral phage regulatory framework' has been introduced where phage products can be prepared by a pharmacist on a doctors authority.

* in Poland and Georgia it is regarded as another medicine and available by prescription for tailored phages or at pharmacies for common infections.

* in the European Union (EU) phages are allowed under approved protocols as outlined by the European Medicines Agency (EMA) - a decentralised agency of the European Union (EU) responsible for the scientific evaluation, supervision and safety monitoring of medicines in the EU. Without the EMA's approval phages would not be available in Belgium or Poland, both EU members.

Some good references; 

American Society for Microbiology: https://jvi.asm.org/content/89/15/7449

We need phage therapy now: https://www.mdpi.com/1999-4915/10/12/688/htm



OH, to help in this noble quest (😅) please donate here; www.facebook.com/donate/390637581737170/

or here; www.gofundme.com/phage-or-fail-with-antibiotics

Biophage Research at Monash University

Dr Benjamin Chan from Yale now has my medical info from my various doctors and a couple of hospital discharge summaries. I hope they can make progress in getting FDA approval and schedule me in!

In the meantime I came across an Australian researcher, Monash biologist Dr Jeremy J. Barr, who was awarded a Ramaciotti Award grant for Biomedical Research worth $137,534. His research is in bacteriophage treatment to combat antibiotic-resistant bacterial infections.

www.monash.edu/science/news/current/monash-biologist-awarded-over-$130,000-to-investigate-bacteriophage-therapy

In the meantime please pass this page to your friends, or LIKE my FaceBook page: www.facebook.com/Coughing4CF/

Walter---

GoFundMe FundRaiser
https://www.gofundme.com/f/phage-or-fail-with-antibiotics

Facebook FundRaiser
https://www.facebook.com/donate/390637581737170/

Camino De Santiago

Hands up who has heard of the El Camino? The Camino De Santiago, aka El Camino, The Way of St James, or just The Way. It is an enlightening pilgrimage ending up in Santiago de Compostela in Spain. Some people walk in from the UK, some from Portugal, but most walk through France.

And this is what my dear friend Judith did with her partner Jen. And they dedicated their pilgrimage to me! As you can imagine this was totally unexpected and an enormous honour. Who would walk 500+ kilometres for me? Well, they did!

They also promoted the BACTERIOPHAGE cause and pleaded for donations for me to help make the world more aware of how great a tool Bacteriophages are in our war against antibiotic resistance. This boosted my campaign greatly, and they even donated a dollar for every kilometer they walked, most generous!

Judith and Jen:

...And feeling so very lucky to have just finished walking the Camino Sanabrés. As many of you would know walking 500+km was not something that was on my wish list! I DO however realise how fortunate I am to have the good health to be able to choose to do such a thing.
As it so happens, you can choose to walk a camino for someone else and Jen and I chose to walk ours for Walter J Van Praag.No doubt in my mind that Wally will be up to walking another camino before too long but first he needs to kick an antibiotic- resistant lung infection - a particularly shitty thing for someone with cystic fibrosis to be doing battle with.
Wally’s best hope of winning that battle is with phage therapy - a quiet achiever that needs help getting some air play. Jen and I are both kicking in a dollar for each kilometre we just walked to help Wally document and hopefully film his experience working with Dr Benjamin Chan, a phage researcher at Yale University. He has had success treating a handful of people with phage therapy so far - have a listen to this radio interview to find out more.

https://www.cbc.ca/…/viruses-that-kill-superbugs-could-save…

I know there are many good causes out there and not everyone can afford to contribute to everything. But if you have a spare $5, please do consider joining Walter’s “Phage Club” and helping advance phage therapy more broadly. It’s likely we will all need it at some point in the not too distant future.'

https://www.gofundme.com/phage-or-fail-with-antibiotics

If you have a spare 15 minutes do listen to the CBC interview with Benjamin Chan, the man who I am hoping will treat me in the coming month or two.

Just one note, phage-therapy is not a miracle cure, it is a treatment just like antibiotics and usually given in conjunction with antibiotics. It is important we get phage medicine as part of regular treatment for antibiotic-resistant infections. Exact reasons are detailed in the interview with Dr Cahn. People with Cystic Fibrosis are often infected by such bacteria and would likely need treatment on an annual or more frequent basis. Some lung infections us people with CF get are worse than others, and my Pseudomonas Aeruginosa infection is one of the hardier ones. Chances are great that after that one is eradicated another opportunistic bug will grab hold, but many are more treatable with standard antibiotics still....

Thank you Judith and Jen for your great contribution and support! And if you believe in phages please support my campaign: www.gofundme.com/phage-or-fail-with-antibiotics.

All monies raised will be used for publicity of the cause, not for my travel or treatment!

Phages coming to the Surface... at a sewerage near you!

Great to see the world is waking up to Bacteriophage Therapy!

Just last week on SBS in Australia they showed a BBC program Michael Mosley versus The Superbugs. It explained the problem we have with Antibiotic Resistant bacteria infecting and killing us and how expensive and difficult it is to find new antibiotics. If you are in Australia have a look, and fast forward to minute 50 to get to the phage bit. Watch:  www.sbs.com.au

But really, the best coverage on Phages was on this fantastic documentary which,.... is in Dutch. Just got a call from a friend in Holland to urge me to look into Phage therapy! Well, yeah!
Watch: Dokters van Morgen

Here is some info from the Dokters van Morgen doco;

Dutch people are going to Georgia (former USSR), Poland and Belgium for Phage treatment because it is not available in Holland, despite research done at Dutch academic institutions. A recent petition in Holland presented 40,000 signatures to the Dutch parliament demanding Phage Therapy to be allowed! In the USA the FDA allows phage therapy to be used in case by case situations but usually only in end-of-life situations. Those cases are well documented and mostly have positive outcomes. In Georgia, phage therapy goes back 100+ years and in Poland 70+ years, all have detailed studies, books, papers and even recent peer review trials, none of which are accepted by the Dutch RIVM (National Institute for Public Health and the Environment).

The program explains how phage therapy in the West was dropped in favour of Antibiotics because phage therapy only targeted one bacteria at a time whereas Antibiotics offered one pill for all, and also assumes phage therapy is not explored because pharmaceutical companies are the ones that invest the 10s of millions of dollars required to do the clinical trials and get new medicine approved, but not for medicine they will not make a profit on. No one else has that sort of money to run the official trials needed to approve it. Besides, phages are abundant in this world and often the labs that study and isolate them just retrieve them from their local sewage system, their local rivers or any other bacteria-rich environments. Obviously not something a well respecting politician likes to hear.

In Poland and Georgia where phages are widely accepted as standard medicine and available by prescription for common infections, as normal as it is to get antibiotics. Commercial phage cocktails are sold in pharmacies for little money!

The documentary follows dutch patients to The Institute of Immunology and Experimental Therapy PAS in Wroclaw, in Poland, and to the

Andre Gorsky from the Polish Evergreen Phage Lab said they operate their lab in Poland, in the European Union (EU), with EU support, using EU approved protocols as outlined by the European Medicines Agency (EMA) is a decentralised agency of the European Union (EU) responsible for the scientific evaluation, supervision and safety monitoring of medicines in the EU, and cannot believe other countries do not recognise their decades of research, their peer-reviewed paper or  seem to accept that phage therapy saves lives. Andre says the EMA clearly allows phage therapy to be used in the EU where it is proven that other medicine has failed.

Back in the USA the UC San Diego Center for Innovative Phage Applications and Therapeutics, touted as the first phage therapy centre in North America, bringing innovative research and clinical practice to the field of medicine. There they treat with phage therapy on a case by case basis FDA approval process. Apparently, the phages used there come from a lab in Belgium, Europe!

Belgium; the Queen Astrid Military Hospital in Brussels and www.p-h-a-g-e.org have been instrumental in getting approval for phage therapy in Belgium, This means that as of last year a physician in Belgium can now prescribe phages to treat a patient, and a pharmacist can receive this prescription and prepare a tailor-made phage cocktail for that patient!

This Dutch lady is emotional because she was cured after 7 years battling and being told her bladder had to be removed.
She cannot believe the Dutch do not allow phages in Holland yet, letting people die and suffer unnecessarily!

So,... maybe I should go to Belgium, I know the beer is good there and they have an excellent bicycle path network so I feel at home. And I should find some Cystic Fibrosis patients in Belgium and see how they go!!!

NOW SHARE THE BELOW LINK TO HELP ME SPREAD THE PHAGE MESSAGE IN MY QUEST TO BEAT THE BUGS;

Phage or Fail: https://www.gofundme.com/phage-or-fail-with-antibiotics

Holiday Fund???

Come on people, this is not a fundraiser for me to finance treatment or have a holiday. Just thought I would be clear on this. I am mostly self-funded, always have been. I have done a lot of fundraising, and usually funds go directly to CF Associations etc and never into my bank accounts, but even so people were still regularly accusing me of asking them to fund my holidays. This is a big downer for me and makes me upset.

This time I want people to know about phage therapy and want to make a small documentary and publicise my experience because I feel this is something we need to know about. All of us, not just people with Cystic Fibrosis. It costs oodles of money to make a documentary (smallest budget is $1000/minute for a ! This is just a small start to see if there is interest!

I shared my CrowdFunding campaign on just one CF Facebook group and had some bad reactions. I am not going to post it on any other CF sites because I have spent hours and hours replying to negative misinformed damaging comments. Other people can share it if they like, but I will not subject myself to shitty comments like 'how dare you ask people with CF for money'. I am trying to help all of us, I am asking for a nominal sum of a $1 or anything to add your name to the list. A small investment in something that will one day add 10 years to your lives!

The world needs to know about Phage Therapy! My CF team in Australis has no idea about it. It is not widely known about, and is sometimes used (successfully!!!) as a last resort when it is almost too late for any cure! Read about Tom Patterson, PhD, a 69-year-old professor in the Department of Psychiatry who was saved from his deathbed. Just one example where Phage Therapy saved a life.

Another comment I fond on my post to the CF group was 'Pharmaceutical companies don't invest in it because it obviously doesn't work'.  How about Fluimicil, a mucolytic available in Europe and Asia for the past 40+ years is still not in Australia. Why not? Because it is not worth the investment for the pharmaceutical companies; 'It is available as a generic medication and is inexpensive'. Does it work for people? Absolutely, and finally, 40 years since it was given to me in Holland where I was born, people are starting to see the benefits of oral acetylcysteine. This took 40 years and still it is almost unobtainable in Australia. It is a money game. Why did we ditch electrics in the 1950s? Because oil made oodles of money. We are slowly trying to get back to electrics as the world changes its opinion on fossil fuels, even though it is way too late and we have almost 'missed the bus' on climate change.

Open your eyes people, open your eyes!! I am doing this to help people with Cystic Fibrosis and others with antibiotic-resistant infections, and I am scared to post this on CF forums!! Please spread my Crowdfunding campaign or this website and donate a dollar or more so you are on the list and kept up to date with the 'updates' that people that donate get in their email.

Walter---

Phage Club!

Yes, you should join the Phage Club! How? Why? Where? What?

If you have used antibiotics in the past and felt they did not work so well you are right!

Antibiotics are slowly becoming more ineffective. We need an alternative! If you have a chronic condition such as Diabetes or Cystic Fibrosis or have an immune problem, you WILL one-day catch superbugs and will need Phage Therapy because antibiotics are just not working for superbugs commonly found in hospitals worldwide.

By donating $5 to the Gofundme crowdfunder you will be helping promote the knowledge and effectiveness of Phage Therapy and you will be on the Phage Club list!

I have a Pseudomonas aeruginosa infection resistant to antibiotics. It is just one of many bacteria that people with Cystic Fibrosis get and have trouble controlling. I am going to show the world how Phage Therapy works and am going to visit Yale University where Dr Benjamin Chan there, an Associate Research Scientist of Ecology and Evolutionary Biology, will try to kill this infection in my lungs using Phage Therapy.

The money I collect using the Phage or Fail crowdfunder will go towards making a documentary, getting publicity, press coverage, and help my travelling costs from Australia to the USA (people with Cystic Fibrosis are not rich :(  ).

Click some of the links above to read some background information! Links like
www.the-scientist.com/cover-story/viral-soldiers-34289 from where I got the image above..