Pooling our resources

[brd888]

I noticed with the recent FDA article how difficult it is for Rebecca et al to try and publicise dangers of laser surgery when faced by corporations and scores of surgeons who rely on it for a salary.
Of course I agree that something should be done about that despite the adversity.

However what about trying to lobby something more positive?
Three areas needed in medical science are I think:
1. A field of medicine between Ophthalmology and Dermatology.
2. Research into improving prognosis of lasek dry eye patients.
3. Better treatments for Blepharitis / MGD.

Even if we could get papers or updates from "experts" who are working in these areas would be nice...

Any thoughts?

Thx
Bruce.

[odydnas]

I think that's a good idea, Brd888. Instead of sending in individual letters/complaints, I think we should lobby as a group, with a name too, like the Dry Eye Association...or something like that..haha, just like other diseases. It would just be easier to make our voices heard.

[lboogie]

Seriously -- that is a great idea. NOT that Rebecca needs more to do. But I don't see why there couldn't be a Dry Eye Disease Association, or an Ocular Surface Disease Association -- with 501 c3 status. Not sure what results it would have -- it seems though, that at a minumn it would allow the organization to fundraise, pay a staff membmer or 2 (like Rebecca), and potentially have a bigger voice where we need to have it.

[brd888]

Ok but

Yes but I am not talking about forming a group or association. I mean we have lots of people on here looking for answers but not really doing anything to progress or push the medical field...

I attach an email I received after donating a small amount to a charity:

> Dear Mr Dunn
>
> Further to your emails about your 'dry eye' problem. You will be glad to
> know our research group here includes a leader in the field who has an
> expert knowledge of mucines and collaborates with others all over the
> world, seeking improved treatments for this condition.
>
> It is very helpful to have the advice of a dry eye sufferer and emphasise
> the need for more work to be done.
>
> All best wishes,
> Sam Gaussen
> Director
> National Eye Research Centre

Now, thats lovely, isnt it? But with a little pressure maybe we could find out more about their "leader" and his latest efforts.
Meanwhile we have experts like Alan Tomlinson in Glasgow who has written a book an inch thick about the tear film and meibomian glands - he knows it like I know beers. Yet what treatments have we? A hot bag and a cotton bud? 101 eye drops with the same 2 or 3 active ingredients?

Regards,
Bruce.
PS despite what I say the hot bag really does provide relief...

[odydnas]

I think what lboogie and I meant to say is that when individuals try to push the medical field to take us seriously and actually put some money into research for dry eyes, it's futile. I mean....especially if its a disease that health professionals and our friends/family roll their eyes at.

But when an association or group of people (with a name) try to put pressure on the medical into doing this, only then will our voices be heard and we'll be taken more seriously.

I mean not just medical help but social help too. Wouldn't it be great if severe dry eye can be considered a disability so it would be easy for us to get accomadations that we need, health issurance to cover eye drops, goggles, etc, and disability coverage if we need to stop work for a while?

Being on the computer is tough, but when I can, I will try to read up on what it takes to start an organization and this 501 c3 status...which I know absolutely nothing about.

Out of curiousity, say there is an Ocular Surface Disease Association or whatever, would there be patients actually interested in joining and participating in signing petitions/letters to the medical field that we need help or fundraising to give money to research etc?

[Rebecca Petris]

I think that organized efforts can be effective, with or without actually incorporating. Organized is the main thing. I'd love to work in that direction except that unfortunately I'm already overextended so I've had to content myself with doing what I'm doing.

As regards 501c3, odydnas, the incorporation part is not that big of a deal. We did it for LaserMyEye back in 2004. Basically you need some names to form a board of directors, $500 for the IRS, a coupla hundred for expenses associated with local incorporation (depending how you do it) and either someone smart to deal with all the initial paperwork or some money to throw at a lawyer to do it for you. What's much more involved is what comes after. To really wield some influence you need a medical advisory board and some serious fundraising (ala Sjogrens Syndrome Foundation). Or going the grassroots low-budget direction, you just need to be really organized and get some good ideas going. - Which then goes back to Bruce's point (I think) which is that given the people, ideas and organized-ness, it might be effective with or without a 501c3.

[brd888]

Out of curiousity, say there is an Ocular Surface Disease Association or whatever, would there be patients actually interested in joining and participating in signing petitions/letters to the medical field that we need help or fundraising to give money to research etc?

Sandy,
Yes this is more of what I am thinking. Petitions/letters/funding.
For example If I or we contacted The Department of Vision Sciences at Glasgow Caledonian University (for example) maybe we could find out they have ideas and areas which need funding for research. Thus we could petition charities or government departments to attempt to divert funding. It might never work of course but I think it is at least being positive.

Also we have to consider groups such as The Dry Eye WorkShop (DEWS) who may already be doing this sort of thing anyway.

Cheers,
Bruce.

[odydnas]

Thanks Rebecca for explaining the whole incorporation thing. Getting organized is definitely the main thing.

Bruce, great idea! That was in terms of what I was thinking.

Do you know if DEWS is just for eye care professionals, or does it include patients as well? What do you think about having membership for patients to be a part of DEWS, so if we were to petition, we would have a lot more credibility, with medical professionals on there?

[bernmee]

I don't have any infoto contribute but I am following this thread with interest.

Bernadette

[brd888]

Dews

DEWS is a global workshop meeting to bring tear film scientists together. It is sponsored by the TFOS (Tear film and ocular surface society)
TFOS's remit is to:
"Advance the research, literacy & educational aspects of the scientific field of the tearfilm and ocular surface
Organize and coordinate international conferences, workshops and seminars to promote better understanding
Stimulate interactions among members, attract basic scientists, academic clinicians and industry representatives with diverse interests and expertise"
These guys are obviously working toward treatments, cures, research etc for tear film diseases (yahoo!). Therefore we don't need to do anything in this area which isn't already being done.
We also have the "Congress of International Society of Dacryology and Dry Eye" which met in Istanbul this year.

At our level I think the best we can do is lobby to bring out treatments to the public, demand better care and more frequent consultations...
On the research side if we could find out about trials and maybe even participate. Has anyone on this board ever been a participant in research? Why not?
How do we find out what TFOS is up to and how can we contribute?

Cheers,
Bruce.

[irish eyes]

Do you meant participating in trials for new drops or research in general?

Whilst I was regularly attending the hospital, I asked about trials/research but no-one seemed to know of anything that was going on. The doctors were usually kind but patronising - and muttered a lot about hormones. (Perhaps there just wasn't a category for me to fit in?)

I heard there were trials going on at the University of Ulster for a new type of artificial tear, so I wrote asking to know more. I received a patient information form with an invitation to write back if I had any questions (which I did) but have not heard anything further. (I might chase them up tonight)

I am sure that any of us signing up for trials / research would be 100% committed and compliant. I have had plenty of practice.

[odydnas]

I think a big problem is that many people (including scientists and clinicians) do not realize how big a problem this really affects us and how our quality of life can be very difficult. I feel like a lot of people do not take this condition seriously...and therefore, there is no active research into helping us out, and no social services for us.

I have never been a participant in a clinical trial because there are none for me. THAT is one of the problems we face. In terms of lobbying to bring out treatments to the public, how can that work when there are rarely any treatments? I mean...dry eye isn't a hot topic like cancer when every scientist is jumping on board and working on basic and translational research. I want dry eye to be a hot topic...I mean I think it could potentially be market where a lot of money can be made, with the increase in dry eye and all.

Let's just say we were to organize into a group. What specific goals would you want to achieve?

One big goal I would like to see is that this is considered a REAL disease, not some little annoyance and have health insurance cover our OTC eyes, eyewear, and etc.
Another goal I would like is to lobby for funds to direct to scientists and clinicians who do dry eye research.

[kitty]

I agree. You tell someone that you have Dry Eye and they look at you like, "Well, then, use some Visine". They have no comprehension how debilitating this disorder can be. I know of a lot of older women, post-menopausal, who have DES and just accept it as a fact of life, another body part drying out due to hormonal changes. They suffer in silence. It would be wonderful to have some sort of action committee that would move towards some real change in how this disorder is perceived, , diagnosed, treated and most importantly, prevented.

[irish eyes]

You are so right!

I don't remember my condition being taken that seriously when I started out with it. Now I am that bit older, there will be no sympathy at all.

I can predict what will be said....." ....Women of your age blah blah blah.....".

Treatment doesn't seem to be any further ahead. My blood pressure is soaring just thinking about it.

[Helen26]

Do you meant participating in trials for new drops or research in general?

Whilst I was regularly attending the hospital, I asked about trials/research but no-one seemed to know of anything that was going on. The doctors were usually kind but patronising - and muttered a lot about hormones. (Perhaps there just wasn't a category for me to fit in?)

I heard there were trials going on at the University of Ulster for a new type of artificial tear, so I wrote asking to know more. I received a patient information form with an invitation to write back if I had any questions (which I did) but have not heard anything further. (I might chase them up tonight)

I am sure that any of us signing up for trials / research would be 100% committed and compliant. I have had plenty of practice.

I enquired about the University of Ulster trial and found out that the drops are just a form of Sodium Hyaluronate (not sure if I've spelt that correctly!). I was also told that I would need to stop using Restasis, which has helped tremendously with the dryness so I don't want to give it up.

Does anyone know of any other trials currently taking place in the UK (particularly for anti-inflammatories or mucous-restorers) or any doctors who are involved in trials?

I am so sick of so-called dry eye specialists in this country. Last week I went to see another consultant (the 7th I've seen!!) - the best suggestion he could come up with was to take migraleve (even though I know my dry eyes are nothing to do with migranes!) I'm rapidly running out of money (and patience with doctors in the UK).

Helen