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PLEASE sign our petition urging R&D for pipline dry eye drops

Started by Betsy, August 19, 2016, 07:11:45 PM

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Betsy


We created a petition seeking awareness that we'd ideally to lead to funding for all those pipeline eye drops (for dryness and corneal neuralgia) that have yet to come to market due to financial constraints. It's really about action more than simple awareness. I was told I cannot post the link and was asked that people send me an email if you are interested in signing. I know many won't do the extra step, but please know how important this is for all of us.

Clinical trials are very expensive and right now many of the pipeline drops are in various stages of the trials. But we don't have our lives to wait. This includes drops targeted towards Sjogren's dry eyes as well. These companies are not big like Allergan to be able to easily put out something like Restasis which worked in only 15% of patients during clinical trials. Meanwhile the smaller companies with better clinical trial results are stuck.

It will take just one moment to sign. We need as many signatures as possible. Please ask your friends and family to sign as well. The more people that sign, the better the chances of getting noticed. Thank you all for your support and please message me so I can send you the link, thank you!

Betsy

Bumping this thread. I see 42 views but only a couple people asked for the petition link.

In the 10 years I have suffered with Sjogrens type symptoms, I have seen nothing come out to help us. There is power in numbers. I really hope that we can get these pipeline eye drops to consumers quicker with better results from the petition. I have a list of the pipeline drops if anyone is interested. As of right now we have Restasis which is only for aqueous tear deficiency, yet 87% of dry eye patients suffer with meiboian gland dysfucntion. I have both, plus corneal neuralgia, plus corneal erosions. Lifitgrast/Xiidra most of us cannot access yet but my understanding is that it too is for ATD only.  We need more options than that and we deserve better.

I can't be here much due to computer worsening my eyes.  I really wish I could just post the link here. I will try to check in when/if someone wants to sign this petition. Thank you.


alwaysimproving

> Lifitgrast/Xiidra most of us cannot access yet but my understanding is that it too is for ATD only.

What does this mean?

quietdynamics

Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Ohiocat

I have no idea what a pipeline eye drop is or why it would be important. So what are you talking about?
female 50+, no thyroid - levthyroxin 125mcg; Primary Sjogrens:  Dry mouth; Dry eyes-thera tears, Restasis twice daily;

Betsy

Quote from: Ohiocat on August 23, 2016, 04:38:32 PM
I have no idea what a pipeline eye drop is or why it would be important. So what are you talking about?

Rebamipide: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4456696/

Diquafosol: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3664386/

ML7: http://www.neuroptis.com/Biotech/Press.html

SYL1001: http://www.sylentis.com/?/108-sylentis-reports-positive-pha

Lacritin: http://www.ncbi.nlm.nih.gov/gene/90070

Lubricin: http://lubris.net/dry-eye/

Kineret: http://www.schepens.harvard.edu/news/news/dana-dry-eye.html

NGF0213: http://www.dompetrials.com/clinicaltrials/an-open-label-study-evaluating-safety-and-efficacy-of-recombinant-104

rhNGF: http://www.dompe.com/Ophthalmology/

KPI-121: http://kalarx.com/pipeline/pipeline-detail/

Tavilermide: http://www.mimetogen.com/

Lifitegrast: https://www.shire.com/research-and-development/pipeline

Topical Statin: http://sydney.edu.au/cdip/opportunities/pharmaceuticals/14447.shtml

RGN-259: http://www.oraclinical.com/articles/rgn-259-confirms-efficacy-signs-and-symptoms-dry-eye

Amniotic Membrane Extract: http://www.healio.com/ophthalmology/cornea-external-disease/news/print/ocular-surgery-news-europe-edition/%7B11e2d0b2-2d70-40e2-9fc8-ca63b47154b2%7D/amniotic-membrane-extract-shows-promise-in-treatment-of-corneal-epithelial-defects

Platelet Rich Plasma: http://www.healio.com/optometry/cornea-external-disease/news/print/primary-care-optometry-news/%7B41d6493c-4937-4d3e-93ee-efbf4a1a96de%7D/platelet-rich-plasma-successfully-treats-dry-eye

Betsy

Why are they important? Because what's currently available does not work for the most advanced most severe and painful dry eyes. Patients in pain understand as they are the most likely to research to try to find relief.