In his words, edited to remove any identifying phrases or words:
“Today marks exactly
No drugs, quite a result, and not atypical.
In his words, edited to remove any identifying phrases or words:
“Today marks exactly
No drugs, quite a result, and not atypical.
Patent: Further information: Association for Molecular Pathology, et al. v. United States Patent and Trademark Office, et al.
Methods to isolate and detect BRCA1 and BRCA2 (Breast cancer genes) were patented in the United States by Myriad Genetics. (So just so everyone is clear, this company has effectively patented a part of the human genome, human genes. There are lots of examples of this kind of idiocy, including famously a Texas company patenting Basmati Rice and then seeking to prevent Indian & Pakistani growers from selling their rice under the name Basmati any longer in jurisdictions covered by the patent).
This US patent has been challenged by the American Civil Liberties Union. On March 29, 2010, a coalition led by the American Civil Liberties Union ACLU successfully challenged the basis of Myriad’s patents in New York District Court. The patent was invalidated, but the decision was appealed.
On July 29, 2011 the United States Court of Appeals for the Federal Circuit made their decision and ruled that Myriads patents are valid.
Effect on Gene Testing
The conditions of Myriad’s BRCA patent require that the only laboratories legally allowed to test and sequence the genes are the ones affiliated with Myriad. This exclusive control over BRCA testing, guaranteed by the patent, has prevented peer-reviewed validation of the tests provided by Myriad.
Since the BRCA test is marketed directly to the consumer, it is not subject to government oversight by agencies like the FDA.
Without this government review, gene tests must be studied and assessed by scientific colleagues in a peer review. However, the kind of studies needed to validate the tests require access to the BRCA genes, which are protected by Myriad’s restrictive patent. (Is this funny, tragicomic, enraging, befuddling, ludicrous, or just the free-market?)
Thus, without access to the genes (meaning you cannot even study them without paying Myriad a patent license fee, assuming they are willing to grant it, in the USA – like I said, you could not make this up) or the methods used to sequence them, peer review of the test’s effectiveness is virtually impossible. (here I have to disagree, it is impossible unless you pay Myriad for the use of their patents to study their methods to determine if they are actually effective. Genius, I wish I had a patent on you.)
However, the patents have yet to be enforced in Europe, where BRCA research and testing is becoming more widely available, and several laboratories are currently offering their own BRCA testing. The UK firm NewGene offers the test at a very competitive price, to the NHS, its owner, only. (Equally surreal and non-sensical, of course. But cheaper…)
Legal decisions surrounding the BRCA1 and BRCA2 patents hold particular bearing on the field of genetic testing, as the field is relatively young. Until legal guidelines can be applied to the practice of gene testing, progress in the field will likely suffer due to uncertainty. Any decision made regarding the BRCA patents will likely become precedent for future disputes over the use of genes for testing.
Hi, we have long had a well maintained and regularly updated FB page, fed in part via our Twitter account. It gets a lot of activity, daily, with links to news, etc.,
To visit go here, and if you just want the twitter feed the address is @wormtherapy (@helminthictherapy was too long, as much as I dislike the term worm therapy it was that or nothing.).
I hope you find these resources useful.
This is, as the title suggests, one in a series of posts, almost entirely derived from emails from her family that they send me periodically to keep us up-to-date.
At the end of this post, and in a few minutes all the others, is a standard block of text with links to each part of the story of this child, as well as some additional information.
From the child’s father:
“It has been over two years now since we began treating Crohn’s disease in our daughter, “A”, using helminthic therapy.
Specifically human whipworm, from Autoimmune Therapies, and she is today doing better then ever. She was around 21 months old when we started helminthic therapy, she had been diagnosed at 14 months of age, and had not responded to any attempted treatment of the disease, except steroids.
She is now over three and a half, and is as happy, healthy, and as beautiful as any parent could want from a child.
Two years ago my wife and I could have only hoped the future should be so bright for her, and us.
A has now taken four doses of the helminths, and each time her condition has only improved.
I can assure you it was not a straight line to good health, but rather a gradual improvement. Like any good, long term investment, there were setbacks along the way. Despite our better judgment, every time there was blood or diarrhea, in the back of our minds, we would wonder if it was the beginning of a major flare, one that would require the drugs we tried so hard to avoid for her.
But the reality was that it never even came close to that. There is no doubt she is doing better now then a year ago, and certainly two years ago. She continues to gain weight, in fact she is 34 pounds, and her stools continue to improve. We have even begun introducing different foods to her diet, with fantastic results.She can play endlessly with her sisters, is as cheerful as could be, and she is even a little chubby, something we’ll take any day of the week over the alternative.
She has not taken any medication for the Crohn’s disease since shortly after she began helminthic therapy.
Suffice to say, treating our little girl with helminthic therapy was the single best decision we could have made, given the circumstance. The treatment has enabled her to live a normal life with Crohn’s disease, rather then one riddled with pain and fatigue, pills, injections, and steroids.
It is not lost on our family, the thought that today we can focus on teaching “A” to read, and swim, and good manners, rarely worrying or even thinking about the fact that she has Crohn’s disease, instead of living in the bleak future we imagined for her, and us, two and a half short years ago.
I’m proud of what we did for her, and we’re thankful to Autoimmune Therapies for the opportunity to do it.”
End of email.
As it happens I am proud too, particularly of those who work with me to do this. I talk a lot, too much perhaps in the past, of the sacrifices my family has made. Far too little has been said about the team working with me.
All, in different ways, are making very considerable sacrifices to be able to make sure people like “A” continue to get the probiotics they need. Our chief scientist, who had a very good career before I came along, has essentially sacrificed that to peruse this. That is just one easy example to identify and explain.
One day soon I hope that it will be possible to acknowledge their courage, the risks and sacrifices they have made, and to do so completely publicly. I am the figurehead for a group of people who are all intelligent, hard-working, dedicated, principled and very high-integrity individuals.
All intelligent enough to not want their name to appear on my blog.
Here’s to hoping that will one day change and their accomplishments and courage can be lauded publicly.
“A” was under 2 years old when diagnosed with Crohn’s Colitis, and the disease appears from the family’s descriptions to have been severe and aggressive. They approached us when the recommendation for treatment from the child’s Gastroenterologist was one of the biologics, either Remicade or Humira, I cannot remember which.
Below are links to each of the four posts, so far, which for the most part are just emails from the child’s dad on “A’s” progress, and his thoughts and observations.
Managing the links between the posts has become cumbersome, so I have created this standard block of links to tie the story together, explain the context if someone happens upon one of the posts and does not realise they are part of a series, and will probably make a static page to aggregate the whole thing.
Part 1: Part 1 of the story of “A”
Part 2: Part 2 of the story of “A”
Part 3: Part 3 of the story of “A”
Part 4: Part 4 of the story of “A”
When I still lived in the US and Sani Abacha was the suddenly dead president of Nigeria, and it was therefore discovered he had looted billions for him and his family from the Nigerian treasury, some of my friends in the US were aghast at the scale of his corruption. Apparently they did not read much international news.
At any rate my comment was “At least their leaders get a decent price”. Which perhaps explains this map. This is a map of world corruption based on perception, opinion.
In this case, in the accompanying image, a screenshot from my unsubscibing from WebMD Professional, as in for doctors, I was asked the reasons for my leaving.
Amongst which is the most interesting: “Do you only participate in programs sponsored by pharmaceutical companies when an honorarium is offered”.
Honorarium, far more mellifluous a word than any alternative.
I want to emphasise that I believe what we are doing exists in a much broader, well-established context.
The diseases we are trying to work with are all environmental in origin. The hygiene hypothesis essentially says that because we have impoverished the environments defined by our bodies by reducing the variety of organisms that populate us, we are getting sick.
Helminthic therapy is an attempt to restore health by remediating the ecosystem formed by the subject’s body. As in the reintroduction of wolves to control deer populations.
I believe that the most important, eventual, outcome of what we are doing will be to get mankind to see that our health is intricately intwined with our environment. That hundreds of millions of people are already sick right now because of anthropogenic environmental change.
That the environment, our ecosystem, is not something up in the sky or separate from us. That it is part of us, and intricately connected with us, our health, our daily lives, that we are component parts of one integrated, dynamic system.
That the ecosystems defined by our bodies and immediate environment, and our daily habits, have been so damaged that hundreds of millions of people are living lives limited by pain, fear and suffering.
If we succeed in that then a profound change in human behaviour towards our planet will occur. Because everyone will be conscious of their direct stake, theirs or their children’s health, in the health of the planet as an immediate phenomena. Not as some distant possibility that we might be able to put off by using the recycling bins.
That there are not ecosystems, except as artificial concepts. There is an ecosystem, and everyone”s health depends on it in profound and immediate ways, because we are all part of it.
We are the ecosystem. I am the ecosystem. You are the ecosystem.
Further, right now, our species in the industrialised and industrialising world, is under enormous selection pressure. Those with MS or Crohn’s, just two instances, will be much less likely to choose to procreate.
Ironically it is likely that many of the diseases we can address with helminthic therapy arise out of genetic adaptation to parasite/microbe rich environments. So in a sense the best adapted specimens, the very latest genetic models of humans, are those experiencing the worst consequences of environmental change.
We are witnessing not just the extinction of various species, but also a strong and rapid change in mankind’s genetic makeup.
I recognise that we should not attempt to “boil the ocean” as a friend used to put it, but I think if we frame this correctly we will find more allies than at first it might appear, and be able to present the concept of what we want to achieve in a more recognisable, and palatable, framework. We can just fit in, perhaps, rather than trying to present something entirely alien. If we are another environmental cause our pool of allies increase, and our messages are easier to understand, fit within a contextual and conceptual framework that is familiar.
That really is it for a while, enjoy your summers. Get outside, get dirt under your fingernails, get some sunshine, and get some river water down your nose.
Hi, sorry, but we are in the middle of some big activities, including moving.
While that is going on I and my advisory board have decided AIT should stop press contacts and of course blog posts.
Once we have our ducks in a row, and all these new changes, underway and coming soon, I will resume posting and update everyone on all the exciting developments I have had to keep quiet about (difficult for such a blabber mouth like me) for so many months.
I promise it will be worth the wait, but apologise for stopping mid stream like this. Although I have to say we were done with my childhood and adolescence.
So, probably like My Wicked, Wicked Ways, which I think was the title of Errol Flynn’s autobiography, it was about to get a lot more boring anyway.
Meaning, as soon as he got to Hollywood and became famous the book became boring.
On the subject of good autobiographies I can recommend in the same vein The Moon’s a Balloon by David Niven. He did two volumes of autobiographies, and the first was by far the best.
Back soon, take care of yourselves (all three of you).
After two thoroughly miserable, highly-allergic years in that bastion of open-minded, secular humanism, Texas, we moved to California.
The original plan was to move to Oregon, but our car had other plans, and to my great good fortune, broke down in Santa Cruz, California.
Which happened to be nine miles from where my father had washed up, Ben Lomond, after we dropped him off at the freeway on ramp outside Atlanta about 2 ½ years previously. I remember him walking away from the car, watching his backpack and it’s pink fluorescent flash recede with a great deal of relief and satisfaction.
I do not remember the reasons, but despite my earlier attitude about his parenting style, my brother and I ended up living with our father for about a year in Ben Lomond. I think that was around 1972 or 1973, so I was eight or nine. I know I was in the fourth grade my first year in California. Well, in fourth grade after a fashion.
When we moved in he announced his new, and very welcome, parenting philosophy. He was willing to give advice on any subject, but we were to have free-reign over almost everything in our lives. Pursuant to this philosophy, in which beatings were no longer a feature, he enrolled us in a free school. This was a semi popular form of schooling at that time. The theory being, if I remember it correctly, that children were innately curious, and if allowed to channel their curiosity would learn more, faster, because they would enjoy it more. So, at our school the children made all the decisions about what they learned, and when, and how. With the exception of mathematics. What that says about Math I am not sure, but it was the only lesson each week for which attendance was mandatory.
Since I had been reading the dictionary and encyclopaedias for pleasure since I learned to read age 3 this approach might have made sense, in my case.
Don’t get me wrong, my father still had a temper. We pushed his Triumph TR6 (?, 5 perhaps?) sports car over a cliff north of Santa Cruz after he lost patience constantly fixing it, and then we hitchhiked home. This was after watching him take an axe to it (the highlight inevitably being when he got the axe head stuck in the bonnet and lost it even more trying to get it out). Which of course lead to the quite rational decision to change tools. So he emptied his roommate’s 45 calibre, nickel-plated, semi-automatic pistol into it.
I have photographic proof in my mother’s photo albums, an event like that a boy wants to preserve for posterity.
My mother, like many expatriates, had developed this idealised view of the country she came from, and developed the concomitant prejudice against the destination country, also so often seen in expatriates. So, she regarded the US as a country, relative to the rose-tinted England of her imagined memories, of uncouth, uncultured, ill-educated rubes.
In an attempt to inoculate us against this American “disease” we were taken to see things like Swan Lake with Nureyev and Fonteyn (boring!), the movie, and a variety of foreign, subtitled films. One of which coincided with the start of our living with our father, at least in my memory. I believe it was this movie, more than any other factor, that determined how my brother and I chose to live for the next nine or so months, within the very loose parameters defined by our father. It made a huge impression on me, and I think my brother.
I have looked it up, the title is L’Enfant sauvage (The Child Savage, literally, or Wild Child less literally), by Truffaut. A good movie, you can read about it here. View the trailer here. I have to say even a wild child would never walk on all fours as depicted in the movie. Please.
I loved it, but then I was eight and it resonated with me because of the odd circumstances that would allow me to fashion a living facsimile of the forest life of the child in the film.
So it was that while most children my age were dying of boredom in elementary school I, and I think my brother, experienced the best year of my life. With the possible exception of the one in which I lost my virginity. I had a phobia about dying before I lost it for some reason. So its loss was accompanied by more than the usual relief.
We abandoned shoes, spent most of our time running, and it was running, for miles through the forest. We drank from rivers, streams, lakes and even puddles. We ate wild grapes, still the most delicious grapes I have ever eaten, and watermelons, oranges, etc., out of people’s gardens (wild children do not recognise the concept of property). Most of the time we were in Levi cutoffs, leaving our t-shirts at the forest entrance.
I even developed a belief system that resembles my understanding of what Animism is, now.
Our hair grew, uncut, well below our shoulders and was bleached blond and wavy. We slept in our clothes on a bare mattress, ate without plates or utensils most of the time, with our hands. We bathed about once a month, when we visited with our mother in Santa Cruz for the weekend. A good proportion of the visit was taken up with bathing, two baths, the first of which produced so much silt that the bottom of the tub was obscured by mud, the second to actually get clean, but still with silt in the bottom of the bath.
Bathing was followed by painful hair brushing and combing, with my mother then cutting chunks of matted hair out that were entirely resistant to any other approach. Dreadlocks were clearly not yet in style, since if left alone that would have been what would have developed.
On more than one occasion relatively large insects crawled out of my hair, I remember in particular a large, black beetle, and more disturbingly a medium sized spider, suggesting that their could have been prey for it in there, too. Our feet were so tough we could run barefoot on asphalt and gravel, I could extinguish a cigarette butt with my foot without pain, and walk on brambles without the thorns fully piercing my skin.
I learned to run on the balls of my feet, being permanently barefoot. How to suck just the clear surface water from a puddle avoiding the silt, mostly, just below the surface, when various fruits were ripe, to be able to tell the time from the position of the sun to within fifteen minutes, how to climb trees like greased lightening (my brother was always much better at that than I), and frequently slid down banks of dry earth in clouds of dust so dense that one’s mouth was thickly coated at slope’s bottom.
We were in such good cardiovascular shape that for years after I excelled in England at running. Running up slopes, thighs burning, and loping through the woods for hours, exploring new areas. Trying to find new wonders, new discoveries.
Why does any of this matter?
Because from the age of five, until the age of forty-two, with the exception of the year in the forest and the two or three years that followed, I had severe allergies (seasonal rhinitis), until I acquired hookworm. Allergies that required me to carry at the least paper towels, and preferably a tea towel, to blow my nose on, the mucous flowed so quickly. So bad I had perpetual headaches during allergy season, sinus headaches. So bad my eyes would swell shut if I ran through a field of grass, eyes so swollen they hurt from it. Not mild allergies, allergies that often required so many antihistamines I was accused of using drugs at school (this was later, in England), so sleepy was I from their use. Spring meant many days or afternoons spent lying in the dark with a wet flannel over my face, preferably with ice cubes resting on my eyes. This despite being almost inebriate from antihistamines.
Hence, my childhood experiences were a large part of the reason why I was willing to go to Africa and later Central America to acquire worms. Why, when I first read the hygiene hypothesis/old friends hypothesis, it was like a light bulb coming on. Actually, more like the lights going on at the Boardwalk, in Santa Cruz. Why I advocate activities that I am sure many find repellant. Why I was determined to acquire worms, likely hookworms, after that first hour or two of reading about it at my aunt’s house all those years later, in England, in the summer of 2004.
England, where I moved aged 11.
The age I left home for the first time.
© Jasper Lawrence, 2012
I, like many I suspect, who have read the basics of my story, have long wondered why I, alone amongst all those people who wrote or read the same research I read actually acted on it.
Part of writing this is to try and answer that question.
My family emigrated to the United States from England, my original “green card`” is dated May 31, 1968. Which made me just over four years old.
We lived in New York City, in Brooklyn. My father was a computer programmer, or systems analyst, COBOL. I don’t remember much about NYC, except that our car was stolen and I, my younger brother, and mother, were witness to the beating and pistol whipping of a health food store proprietor. Our stolen car was later used in a homicidal hit-and-run.
Welcome to America.
My father was of the mind that to spare the rod would spoil the child, and was besides violent in other ways. I can remember being thrown into my bedroom having committed some transgression, bouncing off the bed, onto the wall and from there to the floor.
I think my parents around this point discovered marijuana, and certainly there were a lot of parties at our house where various people drank and smoked until late, with my brother and I trying for as long as possible to watch the proceeding from the top of the stairs. I can remember falling asleep in bed listening to the music and laughter wafting into my room, and on those occasions when we went to other people’s houses for the parties falling asleep on the pile of coats and jackets in a spare bedroom, and on one occasion a drunken couple briefly joining us on the bed before realising their error and leaving.
My father believed, because his father had required him to cut the switches with which he had been beaten, that children should only be beaten with your open palm. I can remember beatings and violence in the UK, but it is really in NYC that my memories start in earnest. I do remember him destroying our washing machine in England with an axe in a rage because the wringer had taken my arm because I was sitting on it and did exactly what I was told not to.
Because of him, and my mother’s taste in men later all of whom had similar natures, I learned to be very observant, and reserved.
The most memorable beating in NYC was over either my brother or I cutting the rubber shower attachment which fitted over the faucets on the tub. Neither of us would confess, so we both got the beating. It was after that that he decided that since our asses were clearly becoming desensitised that he should add destruction of our favourite toys to the punishment.
A surreal tableau ensued in which he crushed some matchbox toy car of mine, that I had chosen from amongst my newer ones to make it credible, with a pair of pliers while the family sat around and watched.
What the hell were they all thinking, I wonder?
At that time beating children was much more common and accepted than it is now, and while my experiences with it were not those of the majority of my peers, it was not uncommon. I mention it here because later in my story it is germane.
After a year in Brooklyn we moved, now with a new car, to “upstate” New York. Suffern, in Rockland County which at the time was a very rural area, although I doubt it is any longer given its proximity to NYC.
We lived in this fantastic old two storey house at the end of this enormous horseshoe shaped gravel drive. A drive which claimed chunks of my knees at regular intervals, we having set up jumps and ramps from which to launch ourselves on our bicycles.
Behind the house were the woods, through which wound a trail to a lake that had been dammed. In the summer we would swim, fish and play on it in anything that floated. In the winter we could sled down the path and skate on the lake surface.
Giant puffballs, the size of a football (soccer ball) would grow, but sadly for me so would goldenrod.
Whatever it was, the doctors said goldenrod, I was allergic to it, in a big way. And not just allergic, I developed seasonal asthma, and spent every evening during the time of year this went on hunched over a bowl of hot water with a towel over my head. That was asthma treatment in the late sixties in NY State.
When we later followed my father’s mistress to Georgia my asthma disappeared, but my allergies continued.
When my parents’ marriage ended, mistresses can have that effect, we moved State again. A newly single parent, not getting any support from the father, who did not want to return home to her parents in the UK was looking for help.
My mother chose to move us to Texas where her eldest sister lived (Hi Nora). My uncle worked for NASA as an atmospheric scientist (Hi Uncle Bob – lovely man). It was from him that I first learned about the destruction of the Ozone layer, and fluorocarbons. And, perhaps, that grown men could be gentle men in the true sense of the word.
In Houston, and later Friendswood (about the least friendly place on earth to a seven or eight year-old professed atheist – I had to explain the term when asked what religion I was – with the name Jasper, and by the local standards long hair), I learned just how bad allergies, and children, can be.
Timothy grass, wow. I ran through a field of it one day, and on the other side it was clear I was in trouble. My eyes swelled shut, to the point of pain. I had to be lead home by my brother. I was blind from the swelling around my eyes.
Texas. Just. Wow.
Same later on in California, but somewhat milder, certainly no Timothy grass in force like in Texas.
It was here that I was to have the experience which later made me very, very receptive to the Hygiene Hypothesis.
Because I gained first-hand experience, I believe, of it’s potential for allergies. Although I was not to realise that until about 30 years later.
© Jasper Lawrence, 2012
I have read a lot of quite strong worded, and very definite, comments about me or Autoimmune Therapies, often by people who have never met me. I have to admit that I avoid public forums on the subject of helminthic therapy because of this, and because I see a very loud minority expressing viewpoints which do not vary with contradictory information from good sources (not just me). I still find it disturbing to read people, as one for instance, doubting that we were visited by the FDA, that I went to Africa, etc., while saying these were just publicity stunts by me. Most of these people have never met me, and it is this group that seems to hold the strongest opinions. I find this odd.
Because I do not inhabit these forums, nor provide corrective replies, I am growing concerned that some people may give them credence just because I never bother replying.
So, over the next few months, as I get time, I will tell the story, with the help of Marc and Michelle, who were there from very early on, of Autoimmune Therapies.
Also, the story which is probably the best known, my account of going to Africa on Kuro5hin.org, was written without an understanding of how their system worked. Having started writing it on a whim, I stopped at some time in the middle of the night, when I woke up late the next day I found the article locked and being voted on for publication. I had intended to correct various bits by referring back to the basic science again, and was far from finished writing it.
So hopefully this will fulfil the objectives of providing my side of our story, as well as bits of Marc’s and Michelle’s, and a corrective to the incomplete version published on K5.
I am going to break the story up into these parts, with these titles:
Part 2. Developing asthma, going through the medical mill, and learning their might be hope after all.
Part 3. Researching hookworm and other helminths, trying desperately to obtain them from a source that did not require me to travel.
Part 4. Going to Cameroon to obtain hookworm, unfortunately the wrong type.
Part 5. Meeting Garin and my further attempts to obtain the correct species of hookworm.
Part 6. The start of Autoimmune Therapies, and providing therapy from Mexico.
Part 7. The decision to ship from Santa Cruz, CA in the USA to everyone using FedEx.
Part 8. The FDA visit, and the immediate aftermath.
Part 9. Two years, just about, of profound depression and drift.
Part 10. Contact by an inspirational client and the beginning of the end of depression. Contact by the MHRA, what it meant for us and for Helminthic Therapy, current plans and projects.
Part 11. The future, as I see it.
I should have part 2 up and done by January 15th, don’t hesitate to hassle me if it does not show up by that date. I am insanely busy, my work days typically never end before 2 am, and often not before 6 or 7 am. I am gripped by the kind work aholicism which has always possessed me when I am working on something I love.
Yes, I wake up late.