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can\'t we do something?

16 replies [Last post]
By scaredtodeath on Wed, 07-12-06, 04:22

Can't we do something to expedite the vaccine research process? There's so many of us out there who need this vaccine to work. Can't we join forces somehow and fund a vaccine project? I heard about a few good ones at Johns Hopkins and Standford. I think we need to take action.

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By starlight on Wed, 07-12-06, 17:28

Unfortunately, no. It's not that simple.

The problem isn't entirely funding-based. There's a million different problems that come into play.

I worked in a psychology lab when I was an undergrad, and for a simple, run-of-the-mill computer experiment I ran that was just trying to prove something that had already been prove (a necessary step in that experiment before I could move on to proving something unproven - you have to prove that your experimental stimuli works before you start tinkering with variations), it took me over a year to get everything right. My experiment only involved 20 year olds in front of a computer pressing keys for half an hour, and I only needed to have 18 good subjects. And it's not because I was a bad researcher, it happens to every researcher at one point or another.

For medical research, it's 10 times worse. First you need to get consent from the medical review boards and get your funding. This can take quite some time, because with PA, getting involved in a study could very possibly kill you. This has happened in the past, so as soon as someone dies, the study has to stop due to medical ethics. You have to prove to the medical ethic review board that what you are undertaking is either entirely safe, or the benefits significantly outweight the risks. For the research to be accurate, the researchers have to induce a reaction to get baseline numbers for each participant. They stop as soon as any sign of reaction occurs, but some people don't have inital symptoms...they're fine one minute and the next they can't breathe. Many many people live safely with PA every day, and it's not killing millions of people. So you can see how the ethics boards might not see this as an acceptable risk.

Then you have to find people to take part in your study. People who understand that taking part may send them into a severe allergic reaction that has the potential of killing them. Most PA people, I believe, would rather live with their PA forever than sign a form that says "I understand this study may result in severe injury or death" and then proceed to have someone feed them peanuts to induce a reaction.

THEN and only then, can the actual, physical, non-literature research start. They have to figure out how much vaccine or whatever to give to each patient. They have to be monitored, every side effect has to be considered. They have to test it on people of every age, every ethnicity, every degree of severity. They have to prove its safety, and that it works. And they have to prove it more than once. Other researchers have to confirm what these researchers found, because unfortunately, some researchers fudge their data or get paid by drug companies to skew their data in favor of one drug. This can literally take decades.

Then there's getting a drug company to distribute the vaccine or drug. A while ago, they found a drug that significantly decreases a PA person's chances of reacting. No one can get it because the drug companies started fighting about it or something (I'm not sure exactly why, only that it's the drug companies' faults. There's stuff posted about it on the research board a few years back). Then you have to get insurance companies to cover it. Xolair is a great drug that could help PA people that could also significantly decrease their risk of reacting. Unfortunately, a couple people died in the study while the doctors were finding their baseline reactivity. Since the studies stopped, insurance won't cover the drug for PA people. If you want to pay out of pocket for the drug, your doctor would either have to prove that you have severe, untreatable asthma (which is what it IS approved for) or you have to cough up something like $10,000 every 3 months.

Despite all this, there is some hope on the horizon. There's a study going on right now that has really promising results coming out of it. Check the thread on here called "invited to participate in a research study". It's very lengthy, but it's worth reading. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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By Corvallis Mom on Wed, 07-12-06, 18:25

As a working research scientist-- thank you for the excellent explanation, starlight!

We all want a cure. But we also want to know that we aren't dooming our children to a fate even worse than PA... like a "cure" that produces an immune system that doesn't work at all. Tinkering with the function of the immune system is tricky business, to put it mildly.

[i]Careful[/i] research here is a lot more important than [i]fast[/i] research. (JMO.)

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By starlight on Wed, 07-12-06, 22:50

Quote:Originally posted by Corvallis Mom:
[b]As a working research scientist-- thank you for the excellent explanation, starlight!

[/b]

you're welcome [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] For a while I was considering a career in research, until I figured out how much writing was involved. All my upper level english classes in hs and college just burned me out on writing, and switching from MLA (which I've had completely memorized since 8th grade) to APA style in college made me want to scream. =/

[This message has been edited by starlight (edited July 12, 2006).]

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By luvmyboys on Thu, 07-13-06, 01:13

Corvallis Mom, Funny I was going to ask a similar question...I know research takes time, but is there any way to put pressure on to devote more money and energy to PA? To lobby for it I guess? Is it more a political thing (contacting our congressment?), writing to NSF? Educating researchers in the biological sciences/biomedical engineering etc in hopes more will pursue this avenue of research at a more fundamental level? Because if the current studies don't pan out, we could be looking at another 20 years before there is even anything else more promising. It would be nice to have more knowledge in the pipeline.

luvmyboys

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By Jana R on Thu, 07-13-06, 01:21

You might want to also get involved at
[url="http://www.foodallergyproject.org/"]http://www.foodallergyproject.org/[/url]

------------------
Jana

[url="http://www.seattlefoodallergy.org"]www.seattlefoodallergy.org[/url]

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By scaredtodeath on Thu, 07-13-06, 01:42

Luvmyboys,,,,
I so agree with everything you said. We need a cure soon before this reaches an epidemic level.
I know that research takes time (I am a medical professional) and that a safe and effective vaccine is the ultimate goal.
However, PA needs more public and media exposure and support. Look at Parkinson's Disease, for example. Michael J. Fox made a huge difference in its research for cure, as well as public awareness. We need to make more noise. Among us (those with PA and parents of) this PA issues are everyday elements. However, those without PA have no idea what it really is or how deadly it can be. ( I admit I was one of them until my daughter was diagnosed) I will need to do more research on organizations that we can support to directly help fund research for vaccines and will inform you of my findings. WE can't afford to take a passive approach and say the researchers are doing all that they can. We need to become active participants, for our children's sake. Thanks for reading.

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By Corvallis Mom on Thu, 07-13-06, 04:45

The right people ARE working on this problem. Feverishly, in fact. If you don't think so-- contact Hugh Sampson. Do you begrudge these same researchers sleep and at least some time with their own families??

This isn't the problem.

There are SO FEW things that are understood about PA. Why does one person develop this and not another?? Why do some kids outgrow and not others? Why would your immune system turn on you in the first place? Clearly there is a genetic component, but that isn't the complete answer.

And before you say that all you care about is a cure-- think. This is the immune system that we all hope we can rely to protect us from common viral illnesses and not turn our bodies into painful prisons via autoimmune disorders far worse than allergy.

Scientists are doing their damnedest to understand this problem well enough to do something about it.

There are many active areas of research. No, they are not "fast." And who is to blame for that? Partly it is everyone who has ever been harmed by a medical treatment which had unintended side effects. Partly it is because very few of us are willing to offer up our precious children as laboratory rats when one of the outcomes on the consent is "DEATH."

Living with PA isn't easy. But it isn't the end of the world, either.

Medical research attempts to solve some of the thorniest problems in all of science. With totally imperfect understanding of the underlying mechanisms which are at work. It is not at all surprising to me that it fails more often than it succeeds. How many BILLIONS of dollars have been spend trying to "cure cancer?" How successful has that been, really? And THAT is a problem that commands a lot more public attention and cash than PA ever will.

The first step is to understand why it happens and how. This process is not yet complete with food allergy-- these secrets are only beginning to be unlocked. Experiments like these take a lot of TIME.

I share your frustrations, truly. I do. But I also defend vigorously the people who are willingly giving their lives over to searching (often fruitlessly, for years on end) meticulously for shreds of this big picture. They are not at fault for "not doing it faster."

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By Corvallis Mom on Thu, 07-13-06, 04:59

More money out of the incredible shrinking NIH budget would help. Good luck with that one as long as conservatives control the Federal budget. Oh-- and just more money for NIH isn't enough. If you really want money, you need a center at NIH. And then you need to make sure that the people reviewing and funding grants share your perspective.

But would that "speed up the process?" I don't think so.

I guess it really rubbed me the wrong way to have it implied that the scientists just need to get off their lazy arses and get busy.

This isn't engineering and it isn't clinical medicine, and "pressure" doesn't really make it happen faster. The only thing that accomplishes is corner-cutting. How many withdrawn prescription drugs does it take for the average individual to understand that expedited medical advances aren't necessarily "better?"

What you need to appreciate is that the people working on this don't do this like a 9-5 job in the first place. They give their hearts and souls to their work. This is personal for every person working on it. Researchers tend to be like that. Be grateful that such people care about us. I am.

Sorry to be kind of snide-- but I don't think you should be so impatient with the people who are trying to help us until you understand what they are up against.

What you are suggesting is that a platform be built ("the cure") without waiting for the underlying scaffolding (basic science to understand FA) to support it.

There are better ways to invest your time and energy-- unless, of course, you just happen to be a tenured, PhD immunologist looking to make a big career change?

Every year that goes by results in deaths. Preventing them while we wait is a worthwhile cause that we as parents really CAN tackle.

We can calmly educate and advocate for our children and everyone else with a food allergy. Without hysteria-- this merely undermines the credibility of us all.

We can offer our participation in research studies.

With better awareness and better food labelling, many of the deaths can be avoided.

Educating ER doctors/nurses and general practitioners would go a long way to keeping people from dying from their food allergies. Stupid medical practitioners who provide gross misinformation are a HUGE problem. Nobody should ever leave an ER after anaphylaxis without knowing how to use an epipen-- but they do. In fact, lots of them don't even GET epinephrine while they're there. Why is nobody up in arms over THAT??

And to the poster who is concerned that the current studies may not "pan out"-- I can assure you that what you "see" in press releases and scientific publications isn't all that is being investigated. There are many DIFFERENT avenues of research. And new ideas are being generated all the time.

I frankly want to scream when I hear people go on and on about "the vaccine" as if this were the only clinical study underway. It isn't even the front-runner right now, and the entire idea of suppressing IgE production is so novel that nobody knows what the long-term impact will be. Immunotherapy? Well, heck-- that's been around for AGES and doesn't seem to have any negative long-term consequences. It has just been known to kill food allergy patients in the past. But with SLIT studies and the ingestion study at Duke, this approach is probably the closest to clinical use.

Remember-- we are all the faces of food allergy in our everyday lives. So maybe we should all ask ourselves if everyone we know has learned something about food allergy from us. Stop looking for a poster child and think about the fact that for your friends and neighbors... maybe it's YOU.

[This message has been edited by Corvallis Mom (edited July 13, 2006).]

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By shoshana18 on Thu, 07-13-06, 13:38

Quote:Originally posted by Corvallis Mom:
[b]More money out of the incredible shrinking NIH budget would help. Good luck with that one as long as conservatives control the Federal budget. Oh-- and just more money for NIH isn't enough. If you really want money, you need a center at NIH. And then you need to make sure that the people reviewing and funding grants share your perspective.

[This message has been edited by Corvallis Mom (edited July 13, 2006).][/b]

from food allergy initiative's website...

National Institutes of Health
Second, FAI has again been successful at convincing Congress to commit restricted dollars to food allergies in the NIH

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By Corvallis Mom on Thu, 07-13-06, 14:40

How much money is devoted to research on, say, alcohol abuse annually? Rheumatoid arthritis?

It isn't any 17 million bucks. I'll bet that even Echinacea (which so far doesn't even work) gets more money in five years.

The FAI is correct-- this is a great START. But that is all-- this will fund just five research projects. Five-- none of then expensive, with a grand total like that, either.

We need something more like monies for twenty or fifty. And some of the clinical studies will need as much as twenty million EACH.

Never said conservatives [i]were[/i] bad.... just a bit stingy with health and human services bucks.

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By shoshana18 on Thu, 07-13-06, 14:49

the problem might not be that conservatives are so stingy with health and human services $$$...could be that a disproportionate amount of those $$ go to certain diseases. there's only so much to go around...

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By luvmyboys on Fri, 07-14-06, 14:40

CorvallisMom, I am not asking Dr. Sampson to sleep less and take more time away from his family. I was working on my PhD in an engineering field on metabolic pathways involved in production of a cancer drug. I left with my MS to take a '9-5 job' because I realized a life devoted to research was not what I wanted and a life devoted to family was. I don't begrudge anyone time with their family. The more researchers and the more related research projects the better.

I asked your advice specifically because you know so much about research. So maybe there is nothing we can do but I would like to think every little bit might make a difference. From my past I know a number of faculty members who do biotech research and I guess specifically I am wondering if educating people who work in similar areas could motivate them to pursue research projects in the area of allergies, or peanut protein, or ???

Yes Dr. Sampson is perhaps the best route to a faster cure, but we need more basic understanding if/when things don't work out. I am merely hoping for a viable treatment in my children's lifetime. Or maybe just a better understanding so that my
grandchildren can avoid these allergies in the distant future.

It's not all about clinical trials done by immunologists. I had the opportunity to research pretty much what I wanted to as a graduate student and I had a labmate working with a large team putting a vaccine into bananas for potential use in 3rd world countries. As I recall my sister's thesis was related to hepatitis...she worked in the same microbiology dept where a classmate died of PA a number of years ago. No these people aren't going to hand us a cure to PA next year but they could product better understanding if they took an interest. By
educating people one by one can we get someone to take an interest?

Yes cancer commands more attention and $ and so far no cure, but certainly an improvement in treatment. And after all chicken pox
claims about the same number of lives as FA and now we have a vaccine for that.

luvmyboys

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By Corvallis Mom on Fri, 07-14-06, 16:07

Yes-- but allergies aren't a communicable disease. All the rest are. The mode of transmission is well-defined.

People who work in infectious disease immunology are not necessarily well-equipped to jump into research which involves a totally different immune response. Does this make sense?

And even as a grad student, I can guarantee you that the reason you could "work on whatever you wanted" is that you had an advisor who was willing for you to do so. Because grant money drives all of it. Cynical though it may sound, all scientisits who want to keep working have to prostitute themselves to what keeps the cash rolling in.

I have known grad students who were pressured by these forces to abandon very intriguing problems in favor of what "paid the rent," so to speak.

Shoshana's point is a great one-- there really is only so much money to go around. And frankly, chronic conditions which are survivable and non-communicable(as PA is, bluntly) are not going to command the same kind of research dollars that either cancer or hepatitis do. Would you really [i]want[/i] to steal research dollars from childhood cancer research? I don't.

[i]My[/i] point is that the whole notion of a "vaccine" may be inaccurate to begin with. There is no "vaccine" for something which isn't caused by an infectious agent, fundamentally. Now, before you argue about the "cervical cancer vaccine" recently approved, please understand that this is a disease state whose origins lie mostly with the human papilloma [i]virus[/i]. That [i]viral agent[/i] is what that "vaccine" is for. Therefore preventing many cases of the resultant cancer.

Anyway-- I digress. Just as diabetics have been promised for nearly 30 years that "the cure is just around the corner...." so are we being promised this. And just like type I diabetes, severe atopy is not a simple problem in any sense of the words.

It is fine to say that we need more researchers in the field... more money... more innovation.
This all makes good press. Sense of urgency. Good PR. But it is NOT realistic. It is frankly a bit insulting to the people working in the field who have made [i]tremendous advances[/i] in understanding atopy. These are people like Lack, Sampson, Burks, Wood, and their lower-profile colleagues.

Personally? I think that a genuine "cure" is probably about ten-fifteen years away, and that the most promising work right now is in standard immunotherapy, applied with a greater understanding of how FA respond. This work is underway-- but human clinical trials simply cannot be "rushed."

This is also why I pointed out that one of the major hurdles clinical research in the field has suffered is a lack of participants. THAT is something we can all do something about. But it isn't without personal risk.

The other problem is that, as starlight so astutely pointed out, whenever there is a fatality during a study, the study is STOPPED by oversight committees. This means (usually) that any information that could have been gained has been lost when the design of the experiment is shattered in the midst of data collection. Not that I feel it isn't appropriate to stop and re-evaluate such studies. But for the rest of us, waiting, well...it [i]is[/i] a setback.

The best thing that we can all do on a grass-roots level isn't about money or politics, even. It is about raising basic awareness by sharing your knowledge with people you know. People wanted to help fund Parkinson's research because of [i]awareness[/i].
Few celebrities are going to be willing to allow a child of theirs to be used as a "poster child" for FA. It leaves them frighteningly vulnerable to any wacko. I don't blame them at all for not being more forthcoming in the national spotlight. I know of two "celebrity" children with PA. And their families definitely don't advertise it.

I also feel quite strongly that educating physicians and other medical personnel ought to really be a much much higher priority than it currently is.

Ask this-- what is actually killing people with FA? What is the hardest thing about living with a FA? Is it the danger? Really? Because I find that in my own house this isn't unmanagable at all. It is a lack of awareness that is frustrating on a day-to-day basis.
And a lack of understanding on the part of medical personnel is the most frightening, actually. Why isn't [i]everyone[/i] who presents in anaphylaxis treated with epinephrine in an ER?

So what I was trying to get at here is that we need to be pragmatic about what we can accomplish and what we probably cannot. There is no magic bullet for atopic conditions. It simply doesn't exist, and pressuring scientists to find it won't help us.

What will help us is to make death and permanent disability from anaphylaxis rare. So what causes most deaths and permanent injuries? Delay in appropriate treatment, that's what. Closely followed by a general public who still thinks "allergies" can't kill you.

THAT we can fix.

(But I've gotta get off my soapbox, which is collapsing under the weight of the world.... [img]http://uumor.pair.com/nutalle2/peanutallergy/redface.gif[/img] )

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By luvmyboys on Fri, 07-14-06, 17:07

Well I certainly understand your point and I can only hope you're right and a cure is 10-15 years away. I just won't be surprised if, as you said, deaths during studies put an end to all the work currently in the pipeline. I myself considered for a moment if it would be feasible to get my boys to Duke for the current study but infortunately that would mean pulling my children out of school, breaking up our family and raising three little boys on my own since you have to live within 3 hours...as you've said PA isn't that bad. Not bad enough to do that to my family. I have heard that one of the 'underlings' at Duke is moving to Pittsburgh...maybe a study will eventually start in Pittsburgh as well.

Also, I AM doing all I can to educate everyone I can. I have come way out of my comfort zone to do so recently. I hardly even recognize myself anymore because I have always been quiet. After moving this spring I have become recommitted to having some good come out of my boys' FA. I have written letters, made phone calls, mentioned PA to EVERY person I meet from every neighbor, all 30 moms in my moms' group, the church, the guy standing next to me at preschool baseball class...It's at the point people are probably going to get tired of hearing me. I know my husband and I have touched at least a few lives by sharing our knowledge and I am sure there are many lives we've touched that we may never know about. I am merely wondering what ELSE I can do that may be helpful.

My husband actually suggested I go back to school and get my PhD in immunology so I can contribute...LOL...yeah I'll do that while raising 3 little boys. I think he was serious! Now that is a little more of a sacrifice than I'm willing to make for PA!
Luvmyboys

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By luvmyboys on Sat, 07-15-06, 02:59

OK so if the biggest problem we face is educating others...do you think our biggest problem is really the non-educated PA people? I don't know what the numbers are but I have met quite a few PA people and most have very little info about PA. Then when you try to talk to others about PA, they say well so and so is PA and they don't worry about that...

My point is that educating other PA people could be our best route to reaching more people. I don't know...just brainstorming here. But how about making peanutallergy.com 'business cards' and leaving them with our allergists' and pediatricians' offices, esp for the newly diagnosed? Maybe peanutallergy.com could have a team of people that go around to dr's offices and do this. Before you say this won't work, I think some dr's would allow it...it would get promoted as an online support group. I know I asked my first allergist if he knew of any local support groups...what a perfect opportunity to pass on the website. The problem is often lack of information...information available here.

Luvmyboys

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By Corvallis Mom on Sat, 07-15-06, 03:14

I think that is a good idea.

I also think it is a FANTASTIC idea to ask FAAN and AAFA to do outreach with GP's who may be woefully uninformed about food anaphylaxis and not fully appreciate the risks that people with certain food allergies really face.

And certainly we must ask a professional organization of emergency room physicians to make certain that they understand when epinephrine is indicated. And furthermore-- how to recognize anaphylaxis.

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