The following is a transcript from the hearing on House Bill 2699 before the Oregon State Legislature's Health Care Subcommittee on Health Policy, Conducted at 4:30 PM on March 1, 2007.  An audio record of the original hearing is available online at (forward to 1:25 - 1 hour 25 minutes into the audio):

        http://www.leg.state.or.us/listn/archive/archive.2007s/HSHP-200703011459.ram

This audio plays with "Real Audio Player" - if you do not have this installed, it can be downloaded from Real Audio's Web Site for free.  You can also download the audio here in Windows Media format (WMA - 49 megabytes)

For a PDF copy of the PowerPoint slides presented, click here  The slide being discussed in the testimony is listed in bold below. 

I have requested a list of the publications to which Dr. DeBess referred to in his testimony, but he has not yet responded.

Some portions of patient testimony were omitted from this transcript to protect their privacy.

Rep. KOTEK: Good afternoon I’d like to open a public hearing on House Bill 2699.We are waiting patiently for AV to get setup.  We do have testimony on 2699.

Rep. GELSER: Do you want me to start

Rep. KOTEK: Absolutely.  Representative Gelser, would you like to introduce the bill.

Rep. GELSER: Good afternoon members of the committee.  For the record my name is Sarah Gelser.  I’m the state representative from Corvallis, Benton Country, and Philomath, District 16.  I wanted to thank you for hearing another bill after an afternoon of interesting testimony.  We are going to take a shift from healthy eating to gastrointestinal disorders.

House bill 2699 is a bill that I have introduced on behalf of a constituent of mine who you are going to hear from, and he can tell you much better than I can about this issue and why it is important.  But I wanted to tell you why we brought this bill forward.  As you know, we have many people who ask us to introduce and I haven’t done a lot of them on behalf of constituents, but Mr. Boorom came to me about this disorder and the way it was impacting people in my district and I was incredibly impressed not just by his knowledge and passion for the issue but also the commitment he has demonstrated in trying to improve access to healthcare for people that are impacted by this and to improve research, committing significant personal financial and intellectual resources to the creation of a foundation, a research foundation, for Blastocystosis that has put together a number of publications, research studies, and through his advocacy has lead to a research study that has now started at the campus of Oregon State University which has come about through some of his efforts and also has generated a fair amount of media interest in my community.  This was the front page of Corvallis Gazette-Times Midvale Sunday, so all of Corvallis and Albany, so this is an issue that is of concern to people in my community so I appreciate your willingness to hear it, and with that, I will leave it to you Ken.

Rep. GREENLICK: Madame Chair, I’d like to ask a question

KOTEK: Absolutely.  Then I was going to ask Sandy to tell us what the bill does.  Would you just explain the bill, we didn’t get to that.

Sandy: That’s fine.  Thank you Madame chair, members of the house subcommittee.  House bill 2699 requires the Department of Human Services to specify that Blastocystosis is a reportable disease. 

KOTEK: Thank you sandy.  Representative GREENLICK, do you have a question?

Rep. GREENLICK: Yes I do, if I may. Looking at the bill and ORS 433004, I was intrigued that in the first section of 433004, it says that the Department of Human Services shall by rule specify reportable diseases.  And this in the 4^th section specifies reportable diseases.  Are there any other reportable diseases specified by statute as opposed to letting the department of human services do it by rule?

Rep. GELSER: That is an issue that I learned about following introduction of the bill.  It is my understanding that this is typically done by rule as opposed to by statute.

Rep. KOTEK: And thank you representative Gelser for representing your constituent so well.  Is it Booroom?  Boorom.  Mr. Boorom

BOOROM: Representative Kotek, thank you and members of the committee thank you for hearing me today.

Rep. KOTEK: And your name for the record

Mr. BOOROM: My name is Ken Boorom.   I’m here representing the Blastocystis Research Foundation which is a coalition of patients who have been diagnosed with this, and I know it is late so I don’t think we’ll take the whole half hour.  There were two other people who were going to come up here with me, but we videotaped their testimony and we have it on the presentation here too.  Has anyone ever heard of Blastocystis before?

Rep. GELSER: Yes

Mr. BOOROM: One person.  I had never heard of it before coming to Corvallis.  I wish I never had.  Let’s start out with A---’s testimony.  So I’ll let him speak for himself here.

(Slide 2)

(on video)

Mr. BOOROM: Tell us about your experience.

A--- My name is A---, I’m 25-years old.  I was born and raised here.  I have had quite a tumultuous relationship with Blastocystis for the last year and a half of my life.  Last year, when I was at the worst of my sickness, it really affected my ability to be an effective educator.  Just the way Blastocystis functions itself, it brings on intense weight loss, fatigue, diarrhea, a host of symptoms that are not very enjoyable and it got progressively worse and worse and it affected my ability to be effective in my job and to have the energy I needed.

Mr. BOOROM: What kind of symptoms do you have?

A--- The symptoms I have started out with diarrhea, rapid weight loss, inability to tolerate most types of food, lots of abdominal discomfort, pain and bloating, and those symptoms got progressively worse to the point where I couldn’t got for a 15 minute walk without feeling extremely fatigued and tired without being able to tolerate much food I the first place.  It’s really a big issue for a lot of people and I think it affects the quality of their life and their ability to execute their job and enjoy life in general, and I think that is a public health concern for everybody involved in their local community, regionally in the whole Northwest.  So any energy or funding that can be devoted to finding new treatment methods, towards tracking it and in general getting more education and knowledge about this and being able to pass that onto the public is definitely extremely valuable.

Mr. BOOROM: That’s A--’s testimony.  In your packet you have letters from two physicians in Corvallis who supported the bill.  I also included copies of the Gazette Times article.   There is also a book.  You can download the first four chapters from our web site, and it’s available on Amazon.com.  It’s called Commensal and Pathogenic Blastocystis with case studies from Oregon’s Willamette Valley, and I’ve taken some of the case studies out of interviews with patients who have had this, and have had similar experiences.

(Slide 3)

My experience was similar to that for the first year or two of my infection.  I moved here in 2000, within 3 years I had it.   The first year or two were kind of uneventful, then the symptoms got worse.  You go to doctors and they have never heard of it, or don’t know how to handle it.  I kept losing weight.  Then you start going on what I call “Medical Tourism” which is driving around to different states in the country trying to find someone who knows how to deal with this, and my two children have been diagnosed with it as well.  The medical costs just for me are around $10,000 with $15,000 in disability costs so far.  It is a very expensive disease.  It doesn’t need to be expensive, but primarily it is not being addressed properly, so it becomes expensive for patients.

I thought when I came here, I’d start a high-tech company.  I never expected to be doing this.  I would have paid more attention in my biology class had I known that I would be doing this kind of work.  I’m the founder and director of the Blastocystis Research Foundation.  It’s a non-profit patient advocacy group.  You can get more information about it from that web site.  I should have put that on our handout.  If anyone wants to jot it down there.  There are links to the KVAL interview, the article that was in the Gazette Times as well, and you can also download the first couple of chapters of our book as well. 

(Slide 4)

So I used to think there were government organizations that handled things like this.  And I was really surprised when I contacted…this is the person who chairs the organization at the National Level who is responsible for infectious diseases.  I explained the problem we were having with Blastocystis in Corvallis and Oregon, and it wasn’t a question of  - and this is a little scary – it wasn’t a question of they don’t want to help, it was a question of they can’t help.  What happened in the 1980’s and 1990’s, when AIDS became an emerging infectious disease  is they took all the resources from protozoal research and moved it into viral research. So there are really no people left at the federal level who can address a protozoal infection like this.

(Slide 5)

So our goals here, we are obviously talking about 2699, but I wanted to give you some background information here.  There is an active OSU research program.  You’ll be reading about that in the newspaper.  We are developing new diagnostic tests.  We may find in the coming months or years which have been thought to be caused by other things are actually caused by this, and we are also working with a military infectious disease group, and they are actually ahead of the OSU group.  There’s only one guy there, and he’s very enthusiastic about it, so you may be getting some information from that as well.  The final thing is networking, if anyone wants to help out on this, physicians, I know some people here are physicians and nurses, fundraising, public relations, anything like that.

(Slide 6 - What is Blastocystis?)

So you probably know this already.  Viruses, bacteria, protozoa can all make you sick.  Blastocystis is the most prevalent protozoal infection in the United States.  We don’t have statistics in Oregon, but calling around to the hospitals, it is the most frequently diagnosed GI parasitic infection from Good Samaritan Hospital, and there is an article in there that has national statistics.

(Slide 8)

When they first found it, they thought it was harmless, so the question is, if it is harmless, why talk about it?  And this was the first article that came out that started talking about people getting sick from it.  Well, not the first, but this one started a nasty debate.  (Slide 9) Usually research magazines like this are pretty subdued, but this sort of turned the thing into a big wrestling match.  These guys from Saudi Arabia started writing in and talking about this disease that caused fatigue, depression and headaches.  And in the United States this thing is something that is considered commensal.  It is not considered something that causes disease. It was also a little unusual because if you notice that diarrhea is present only in a quarter of the cases, and in the infections we are used to seeing in the United States which are viral and bacterial, diarrhea is usually the main symptom.  In this case, constipation is a larger symptom, and that’s true in other protozoal infections, like Entamoeba histolytica, but obviously if someone comes into a doctor here and says they are fatigued and have constipation, they aren’t going to run a stool test. 

So what happened, when that got published, these folks from Oakland, California wrote back and said you aren’t running your slides right, and this thing can’t cause disease and there’s never been an epidemic, there’s never been a point-source outbreak, so you guys are crazy. 

(Slide 10) So over the next 10 years, we got most of those things.  The epidemics, the point source outbreaks occurred here.  These are included in your handout.  Epidemics of infection in schoolchildren.   This was the original article from Saudi Arabia, then we have returning Gulf War Veterans, reports from Iran, good research coming out of Egypt, right now in Pakistan, 30% of college age students there have chronic abdominal pain. Coincidentally, 30% of the people coming back from the Gulf War had undiagnosed illness, so that’s one reason we’re working with a military research group.

Then it got more interesting.   In Italy where most of these reports came out, it looks like it hit there in the mid-1990’s.  And the final report all the way at the top here is from Australia. 

(Slide 11)

So what we say was this disease started turning up in Dermatology magazines.  Which is a little weird.  Why would a GI infection turn up in dermatology magazines.  We still don’t know exactly what causes the rash, but my theory is this is an invasive organism.  (Slide 12)  These are a couple of shots of the rash.  It comes in two types.  The one on top is a diffuse pruritic rash, and it comes and goes, the one on the bottom is more of a prolonged area where you’ll get certain lesions that won’t heal and stay there for a long time.

(Slide 13) These are the symptoms that our research subjects described in Corvallis.  Pretty much just what we’ve said.  Abdominal pain, skin rash, and diarrhea.  About half of these people are public employees, so this is something that is costing the state.  People talk about the cost of tracking the infection, but if you consider the state is the largest insurer in the State of Oregon.  The money you may be paying out in terms of endoscopies and unnecessary procedures to diagnose an infectious disease, I think you are going to be astounded when we look around and see where this is showing up.  So the question is how does a disease that is harmless in the US cause problems in the Middle East. 

(Slide 14) How can the same organism cause two sets of symptoms in two different places?  The answer is it can’t.  It actually took 16 years to get this research out.  This wasn’t done until 2005.   The guys on this list are some of the world’s leading Eukaryotic researchers.  Sogin is at Woodshole Oceanographic Institute.    (Slide 15) What they did is they took a 100 isolates from humans and birds and mammals and charted them all genetically, and they came up with this which is a little hard to read.   (Slide 16) This is easier to read.  What they came up with was that before this people thought there was one thing called Blastocystis hominis that infected people, and there were these other Blastocystis that infected mammals and birds.  But they found out that wasn’t true.  It turns out that people are picking up isolates from birds, animals, and rodents all the time.  So their analysis showed there are a couple of avian isolates here, a couple from domesticated animals, and this which is the one we are really interested in now which comes from rodents and this which seems to have T’d off from that.  Then you can kind of look over here, you probably don’t want to be getting anything from a sea snake or a lizard. 

COMMITTEE: (laughter)

Unfortunately when they did this, there is something about microbiologists, they don’t ask what the symptoms where when they get the isolate.  (Slide 17) So the question is what happens when you compare the isolates from people in the US who are healthy, well maybe not anymore, to isolates from people who are not healthy from the Middle East.   (Slide 18) This work got done last year, and sure enough, when you cultured the isolates from the people who weren’t healthy – this article in your packet too, unfortunately Representative Crumble is gone, he seems to like a lot of evidence

COMMITTEE: (laughter)

That just looks like something you don’t want to have.  It’s big, it’s highly adhesive.  The isolates from people who were healthy cultured to these vacuolar forms.  These look even more different under a microscope.  These things look totally harmless. They look like little beach balls.  They bounce around and bounce off of each other.  These things stick to everything.  They stick to cover slips, they stick to your slides, you can’t wash them off. 

(Slide 19) Before this, everyone who had Blastocystis – if you went to a doctors office and you had Blastocystis, the doctor thought there was something wrong with you.  So they would run this endless variety of tests to figure out what was wrong with you.  What this showed is maybe it’s not the person, maybe it is the organism.  And just in case someone might say that is making the amoeboid forms, they did a genetic analysis, and they found out it is a different organism that’s causing people to be sick.

(referring to slide)

This is what happens when you don’t understand the difference between the one that makes you sick and the one that doesn’t.  You run endless testing.  This is from a 25-year old patient.  I can’t imagine he has lived long enough to have all these tests run.  It goes on and on.  We’re at the Mayo Clinic, and we’ve got all this stuff going on here, so this is potentially a very expensive disease if you don’t diagnose it and address it properly.  So there will be a quiz on this in a second…Major points, this is the most commonly diagnosed GI parasitic infection in Oregon, and similar data you can pull from other states.  Exposure to untreated water, well water, rivers is a risk factor, and that may be one reason it is common in Oregon.  Specific variants are probably responsible for the disease.  We don’t have clinical tools, but we are working on that at OSU and with another research group, right now we are using diagnosis by exclusion to diagnose the infection.  Any questions?

Rep. KOTEK: I have one.  Can you diagnose primarily through a stool samples?  Is that how you would…

Mr. BOOROM: You can….about 50% of the cases will show up in a stool sample.

Rep. KOTEK: That’s not foolproof, but that would be the general…

BOOROM: Yeah, it was interesting, when I first got into this, I thought we need to get a more sensitive test, and that’s what I’ve been working on, but then I got out there and started talking to people and realized that they aren’t getting the 50% probability by going to the doctor.  I’ve talked to people who’ve been on Prevacid for a year or two, and they’ve had diarrhea, and their doctor never sent them to get an O&P test.   So that was a whole different thing that I never even considered.

Rep. KOTEK: The reason I ask that, and thank you for clarifying that, is that I know someone who needed to have a stool test but did not have insurance, and it’s not easy to have one done if you don’t have insurance.  It costs a couple hundred bucks, and you have to send it away, if you wanted to do it yourself because you didn’t have insurance coverage, it is complicated.

Mr. BOOROM: We’re working with one group that developed a little test for Giardia, and you can buy it and do it at home, but it’s only for animals, because I guess the AMA doesn’t want people to use it.  But it is the same organism, so I guess if you wanted to use it yourself you could, and I think it would be great if a lot of these tests were available over-the-counter.  You could keep them at home, run the tests on the weekend, and give the results to the doctor. 

(Slide 22) OK, I promised a quiz. 

1. There is a large well-funded well-staffed agency of protozoal experts who keep on top of emerging protozoal diseases.   That’s False.

2. Passport regulations will insure protozoal diseases can’t enter the United States.  Obviously.

(Committee laughter)

I’ve shown some people these papers, and they say that’s in Italy or Saudi Arabia, and it’s gotten as far as Denmark where we can get research.  We’ve genetically sequenced some of these, so we can show they are here.

Only one variant infects humans…that’s clearly false. 

And the last one…this one I was surprised about.  I kind of thought that doctors would form organizations and address these things, and I think that’s what a lot of people are expecting to happen.  They are sympathetic, but I get the feeling that they don’t know exactly what to do, there’s not a really clear 1-2-3, so one good reason to make this reportable is to give them some kind of structure within which to operate to report these kinds of infections. 

(Slide 24)

This is what’s reportable already.  I’ve had a couple of these.  They aren’t that bad.

(Committee laughter)

Rep. KOTEK: Excuse me, these are what we currently report in Oregon

Mr. BOOROM: Yes, and there are some others as well

Rep. KOTEK: And this is established in the rule we discussed

Mr. BOOROM: That’s correct

Rep. KOTEK: Thank you

Rep. BOOROM: I’d like this to be like Giardia.  You go in, you get the test, you get a few pills, and it is a non-event.  Giardia was a non-event for me.  That’s because they had a good medication, they had a decent test, and a good doctor who knew what he was doing.  He ran the test, it came back negative, he said that means you have Giardia.  This was back in the 1980’s, and they didn’t have better tests for it, but the doctor was savvy enough they he know what he was doing, so he could diagnose it and deal with it.

(Slide 25)

What we have for Blastocystis is the opposite.  We have poor diagnostics, and the treatments aren’t working as well as they used to.

Dog bites are down here too.  I figure if you can report the dog bits, then you can report something like this. 

Rep. GREENLICK:: Can I ask a question?  None of those became reportable diseases by statute.  They all became reportable diseases because the health division or whatever it is called today saw a need for it and created a reportable disease by rule.

Mr. BOOROM: That could be very possible….and I wish I had gotten something on here because they know what these are, this is an emerging infectious disease, and it is coming at a time in our history where we have unfortunately de-staffed a lot of our experts who address emerging infectious diseases.

Rep. GREENLICK: Can I follow-up?   Have you talked to the state epidemiologist and others who are responsible for that?

(laughter)

Mr. BOOROM: My wife has a story on that.  We called her, we described them, and she said, my god my kids have been throwing up every day for a year.

COMMITTEE: Was that the health?

Mr. BOOROM: It was a woman at the office

Rep. KOTEK: (To wife) If you’d like to come up and testify

Rep. GREENLICK: My question is there are folks in the state health division who are responsible

BOOROM: We’ve sent them copies of it and they are aware of our organization.  If they would like to engage us more closely, we would be happy to engage with them. 

Rep. GREENLICK: Let me try one more time.  Have you specifically asked them to run this through their reportable disease process?

COMMITTEE CHAIR: Introduce yourself for the record

Ms. HANOVER: My name is Tessa Hanover.  And we’ve been dealing with this for three years.  Recently I finally called everyone I could call.  I called everyone.  I called all the health departments. I called Corvallis, Eugene and Portland.  I called the water departments.  I asked can you look for parasites?  We drink two-thirds of the water in Corvallis out of the river.  Salem just dumped their raw sewage in the river around the holidays.  And I know this because it was in the paper.   And I’m sitting there thinking we’re drinking out of that river, and I know it flows North, but what Eugene and Harrisburg, what’s everyone doing?  We get our water from that river.  I called all these health departments, I called Portland, the State Epidemiologist, I’m sorry I didn’t write down her name, and she said, I’m sorry there is just no money to do this.  And I got that over and over.  It’s a non-issue.

Rep. KOTEK: Representative Gelser, would you like to comment?

Rep. GELSER: Yes,  part of this, the issue of reporting by rule or reporting by statue, I would like to take responsibility for that in that my constituent contacted me and I think prior to introducing the bill, I think that I did not appropriately the history of how diseases become reportable, and I feel like that’s a question that I probably should have been able to answer for my constituent.

Rep. GREENLICK: Let me ask, did the state health department respond to this at all?

Rep. KOTEK: We’re going to hear from the state health department in a little bit.  I met with them earlier this week.  So maybe we can finish up your presentation and additional questions or other comments, and then we’ll tag team this so

(Slide 26)

Mr. BOOROM: Basically, we have people coming in here, brining this in.  These are the other patient testimonies. There is a common theme.  This is a little girl.  She’s losing 10% of her body weight.  Another couple of people in Jefferson, Oregon both on well water right next to each other.  Same kind of thing.  They are having endoscopies, the whole bit, they don’t really know what is going on.  We need to address that, but because the diagnostics and treatments are so poor, we need to understand where it is coming from.

(Slide 27)

Rep. KOTEK: Do we know of any other states that track this?

Mr. BOOROM: I think Utah tracked it for a while.  I’ve seen some data from there. I don’t know if they are still tracking it.  This was from Eugene.  Same kind of story.  Uncontrolled weight loss.   Fatigue, so on.  (Slide 28) This one was really sad.  This isn’t her real name. She got it when she was 14 and she still has it.  This is someone who had it for all of her teen years, which is really sad.  Now she’s at a University, and she can barely complete her classes because of this.  (Slide 29) A couple more.  The state of Oregon paid for the medical costs on this first one, same kind of story, uncontrolled weight loss.  She was never diagnosed, so we don’t know what happened to her.  These are available on the web site and the book as well.  Very expensive testing.  Our Gazette Times Article.  This person got it in 1989 and they are still dealing with the issues. 

(Slide 31) When people don’t have healthcare insurance, it goes beyond just how much people are paying into the system for this.   So this family, we were trying to raise $50,000, and this family aid they could have funded us twice over with what they have spent on this,  so you are looking at a disease which can potentially bankrupt a family, so it is a serious thing.  This just came out, if you notice this is from Turkey and the Middle East, so likely the Blastocystis hominis they are looking at is Blastocystis ratti or one of the zoonotic transmissions.  (Slide 32) This happened with Giardia too, I don’t know if anyone can remember that far back, but Giardia used to be considered harmless, but then they found out it was harmful, and they started doing statistics and found out that kids were actually smaller who had it, and they were scoring lower on test scores, which got everybody really moving.  So somebody at OSU said this is sounding just like Giardia.

From video

L---: My name is L--- xxxx, I am teacher and I have a son who is 11 and he has Blastocystosis.  I think he has had this parasite since he was 3 or 4 years old.  His symptoms include abdominal pain and he has this immediate – he has to get to the bathroom.  He has diarrhea.  He has been exhibiting the same symptoms of excess mucous and stomach problems for many years, and this last fall, I was desperate, he has been suffering for so long, we have to figure out what to do, he has taken lots of different medications, and my friend said, have you had him checked for a parasite.  And I would never have thought of that.  I went in to have him checked for allergies for gluten and to dairy.  We checked for the parasite.  He had many Blastocystisis.  The doctor prescribed a round of antibiotics.  He was tested again.  He still had the parasite.  The pediatrician gave him another antibiotic and said this is known to get rid of parasites.  And the second round did not get rid of the Blastocystis. 

Mr. BOOROM: Did his symptoms improve at all?

L---: For about a week, he seemed, his stomach wasn’t hurting as bad, and the mucous subsided but there tends to be this general sense of irritability and he eats an enormous amount of food but he is not gaining weight which makes us think that the parasite is utilizing his food.  We think he could have gotten this parasite from the local Willamette river or we have a creek by our house in Philomath and he is a very oral kid and maybe he just picked it up from the local water.  We do a have a well that is 270 feet deep, but there are 5 people who drink from it, and he is the only person who has had complaints or stomach problems.  I think it is important for the health department to record and have this database so we can have statistics data to show that there are a lot of people and kids that suffer from Blastocystis. 

(Slide 34)

Mr. BOOROM: So just in response to the health questions, Oregon has been a leader in public health.  In 1986, we used to go out and look for infections like this, and screen people in daycare.  We found E. Coli – does everybody know that?  Right here.  (Slide 35) This was the first article ever published on pathogenic E. coli. A similar kind of thing.  Everybody has E. Coli.  It’s everywhere.  Who would ever believe it’s pathogenic.  Same with Blastocystis.  There are a few parallels there.

(Slide 36)

This is what’s happening now.  This is what’s going for public health.  I understand all of these are needed for people who are disadvantaged, but if you can’t keep your working population healthy, you aren’t going to have the money to pay for everybody else.  People keep telling me that they can not do anything because there is no money.  Maybe that piece of the pie needs to get a little larger.  If you don’t, I think we are going to have a really big medical industry in Oregon, and not much else. 

Rep. KOTEK: Before I lose more committee members, you might want to wrap up, so we can hear from public health.

(Slide 37) Mr. BOOROM: This is from Tom Eversole, Oregon spends less than $0.60 per person, about the amount of a candy bar. (Slide 39)  This was a quote from Dr. THl, a board certified gastroenterologist in Corvallis, which absolutely blew me away.  It is absolutely amazing that something like this could exist and not be followed up on.  Inflammatory bowel disease – if that is a risk factor – if we’ve got cases where we are misdiagnosing an infection as inflammatory bowel disease, these people could potentially be cured with an antibiotic treatment, the proper antibiotic treatment.  (Slide 40)  If you want to help in other ways too, we are trying to raise money for the OSU program.  Thank you.

Rep. KOTEK: That’s why I love this job, I get to learn new things every day.  Thank you and thank you for the reading packer.  Questions?  I think we should probably hear from the folks from the health division.  Is it Mr. DeBess?  Thanks for joining us. 

Mr. DEBESS: Good afternoon.  Chair Kotek.  My name is Emilio Debess.  I am the State Public Health Veterinarian.  I am here for Dr. Kohn who was unable to testify in regards to Blastocystosis.  The State Department of Health is in opposition to House Bill 2699 which would make Blastocystosis a reportable condition in Oregon.

Just so you can have a little bit of history, and I believe the individual before me was discovered in 1911, since then it had not had much interest until the 1960’s and 1970’s when it became a parasite.  Since then more interest, more interest was given to Blastocystosis when AIDS became a prevalent condition and disease, until the 1990’s when multiple papers and a number of individuals in the scientific community fighted back and forth in regards to whether it is a true pathogen or not. 

It is important to know that people get diagnosed with Blastocystosis when they have their stool checked when they have diarrhea.  We believe the Centers for Disease Controls that Blastocystis is within a number of organisms that do not cause disease in the population.  And in fact  just because you have the organism present in the stool, that does not mean it causes the problem.  In reality, when you look at stool, as is stated before, a lot of laboratories find Blastocystis as well as finding a number of other pathogens that may not necessarily create or cause disease.

There are few lines of evidence in regards to Blastocystosis but one of them in 2000 has to do with a Swedish study, and they actually found more Blastocystis in well people than sick people.  And that is kind of a landmark article.  They also found that Blastocystis is related to other organisms like Entamoeba histolytica, a parasite that can cause disease.  When individuals are treated who only have Blastocystis, the likelihood of resolving the actual infection has been erratic, meaning some individuals resolve, some individuals don’t do well, and some individuals do extremely well, so it is variable in regards to what happens when a person is treated.

As I said, the AIDS and HIV era did not put Blastocystis forward as an organism that could actually cause illness in people who are immune compromised.  One of the interesting facts about this particular organism or parasite is that when it was actually fed to animals that were bacteria free, it did not cause disease, that is one of the basis by which we actually look at how a bacteria or parasite works.  Based on the number of studies we have seen or read, about 10-20% of the population in the world, and the Untied States, may actually carry Blastocystis.  That would equal about 700,00 individuals in Oregon carrying the organism, walking around with Blastocystis, and not having any symptoms at all.  So that is very telling of the likelihood of the organism and the possibility of causing disease. 

The status outside of Oregon as how people felt about Blastocystis, and we surveyed 30 states of the 50 states, and none of them make Blastocystis a reportable condition.  We asked the CDC, they have an epidemiologist section where they deal with things like Giardia and other parasites, and again they claim there is no convincing evidence at this point that would make us think that Blastocystis is an organism that could actually cause an illness or disease.

In regards, to the organism and the number of people who could actually be walking around with this particular organism, it would create an additional amount of work not only for the laboratories, but also for the physicians and the health department, et cetera. 

We agree that this is an organism that needs more research.  We need to find out what is going on with Blastocystis and basically the breadth of disease that it may cause or may not cause.  And as we see it so far it is not panning out to be a disease causing organism.

We do again support the idea of research, but by making it a reportable condition, it will not actually fulfill the need to do the research that is necessary to help people who have the organism.  Thank you your time, and if you have any questions.

I do have a number of documents, this one particular document.  It is a fairly large document.

Rep. GELSER: Thank you for your testimony.  Have you heard before, have there been discussions in the circle of parasitic disease people, about the question of individuals bringing this back from travel to the Middle East or troops coming back and I’m also wondering if you can comment on for the community and for the community that Mr. Boorom is from, what might explain that seeming prevalence by doctors in our community, and the experience of many of my constituents in terms of being sick and being told by their physicians that it is the Blastocystosis that is causing that for them.

Mr. DEBESS: Chair Kotek, Representative, again, I was asked to do a scientific research on the matter.  And I have seen reports that claim that people who do travel overseas come back to the Untied States, some symptomatic some not, with the organism, so it is one of the conditions, one of the factors that people think is that travel overseas may actually lead to finding the organism.  When you look at the papers written and published, a lot of those papers are from overseas, places like Saudi Arabia, Slovenia, Nepal, all those places report a large a large number of cases of symptomatic and asymptomatic infection  I forgot your second question.

Rep. GELSER: The second question was about the seeming prevalence in the community that I represent where we have numbers of people who are quite ill whose physicians are telling them that Blastocystis is the cause of their illness.  Is my community unique in the State of Oregon for that, and is something like that of concern, and is there some avenue beyond that of a bill for finding out how to treat what seems to be a public health issue in the district that I represent.

Mr. DEBESS: As I stated before, Blastocystis is not a reportable disease, so we usually don’t hear about infections, but we do hear about outbreaks of disease, meaning multiple people in one community, we hear about that, we usually hear about that from physicians or nurses or laboratories that will tell us that we have a huge number of people in one area affected by this particular illness, and it is not limited to the list of diseases that you actually saw up there.  We actually go out and investigates a lot more. MRSA in wrestlers.  We do a lot of work to find out how diseases actually affect the population.  The fact that we have not heard from physicians, nurses, and laureates is perhaps indicate of the level of concern that they have in that respect.  We have seem some data that Blastocystis reported by laboratories, but I have also seen Blastocystis, but other parasites that could create the same conditions.  Scientifically, we have to be careful about what we blame for the particular illness, and assess what is the cause of the problem which is truly a research problem, and not a factor of surveillance.

Rep. GELSER: Thank you.

Rep. KOTEK: Thank you dr. DeBess  Thank you for the testimony. I’m not a scientist.  But I thought some of that was pretty compelling.  At a minimum, maybe we can set up an appointment with Dr. Kohn to look at some of this.  It’s kind of like the chicken and egg.  We aren’t’ tracking it because it is not a problem.  If we could have some other discussion.  I understand the issue around not putting what we want to report on in statue.  But if we could have some further discussion within the department, we would really appreciate that.

Mr. DEBESS: Chair Kotek, as stated before, a lot of the samples that we usually hear about and see about in our reports, may not have only Blastocystis, but may have other parasites as well, which is why we need to scientifically.  And perhaps the health division is not the right division to be doing this, but the research community.  But Dr. Kohn would be more than happy to discuss that with you.

Rep. GELSER: I just wanted to thank you coming and the efforts that you put into this.  Dr. Kohn came and talked with me earlier, and I appreciated that.  And to Ken and Tessa, thank you for coming up and giving your presentation. You continue to be very impressive and I think it means a lot when there are issues that face our families, and I think there is nothing that can make us more passionate than trying to keep our families healthy and safe.  And thank you Representative Kotek for hearing this bill, and colleagues for hearing it.

Rep. KOTEK:  Thank you very much, and its nice to have your kids here too, thank you for brining them.  I’m closing the hearing on bill 2699 and open a work session on House bill 2593, and I want to thank the committee for their willingness to stick with us…..