KC Coffee Morning Special

Members who attended our 2018 Conference will be aware of Dr Stephanie Campbell’s passion for improving the service provision for Keratoconus patients. She currently occupies a very influential position helping the authorities in Wales redesign their service pathway following the recent success in getting them to provide Cross-Linking (CXL).

Stephanie understands the fluctuating and inconsistent problems Keratoconus imposes on those affected and the need for a much wider holistic approach to service provision.

We have offered Stephanie the opportunity to use our KC Coffee Morning as a focus group to find out exactly what we need and desire from the Health Service.

This is an ideal opportunity to convert your ideas into health care policy.

Wherever you live in the UK you can help by arming Stephanie with facts and anecdotes to help her in the fight to get better provision for people with Keratoconus.

Our Coffee mornings provide a good opportunity for those newly diagnosed to meet seasoned travellers and discuss all things KC. Anyone with an interest in Keratoconus is free to join us.

To take part, simply send an email to Chair@kcgroup.org.uk to request a link.

KeraClub 2021

Keratoconus – Now and Beyond: This year, the 6th annual community event for people with keratoconus ‘KeraClub 2021’ was organised as a webinar. The Save Sight Institute and Keratoconus Australia co-hosted the webinar for people with keratoconus, their families, friends, and carers. The speakers were Professor Stephanie Watson, Associate Professor Mark Roth OAM, Mr Larry Kornhauser OAM, Ms Chloe Davies, and Dr Himal Kandel. The event was moderated by Ms Michelle Pritchard. The talks were followed by a panel discussion.

Talk by Howard Maile

At our previous Zoom coffee morning, we were treated to an excellent talk by Howard Mailes, a PhD candidate at UCL. He was talking about his research into using artificial intelligence to assist with the initial diagnosis of Keratoconus, and detecting progression.

Here is a recording of that talk.

The talk is also available on our Youtube channel

We hope you will find it interesting.

Photo Competition for World Keratoconus Day

The US-based National Keratoconus Foundation (NKCF), Keratoconus Australia, and ourselves invite anyone connected to the keratoconus (KC) community to share how KC affects perspective using photography. Patients, friends, family members, and eye care professionals are invited to participate. The objective of KC: Through My Eyes isn’t simply to collect creative images, but to help tell a story of how KC impacts daily life. The photo can focus on the challenges, express how obstacles are overcome, or share an appreciation for beauty that may be otherwise overlooked.

Submissions must be received by October 31, 2021. No more than two photo submissions per entrant.

Click here for full details of the competition

KC Coffee Morning on Zoom

Our Coffee mornings provide a good opportunity for those newly diagnosed to meet seasoned travellers and discuss all things KC. Anyone with an interest in Keratoconus is free to join us.

To take part, simply send an email to Chair@kcgroup.org.uk to request a link.

Please join us to discuss all things KC. We are totally open with no pre planned agenda. Ours is a truly bottom up organisation run by members, all of whom have KC or a close connection. There are no silly questions. If you are thinking it, then there is sure to be someone else with a similar idea.

We hope to see you then.

Bausch & Lomb – Recall

VOLUNTARY RECALL OF CERTAIN LOTS OF CONTACT LENS SOLUTIONS, EYE WASH AND EYE LUBRICANTS

 
No Known Safety Concerns Related to this Recall – This information has been coped from the Bausch & Lomb website. More information can be found on the Which Website. Also comments from our members about alternative products on our Discussion Forum. If in doubt, contact your optometrist.

Verify whether your product lot number is impacted


View a full list of products impacted in your country

Bausch + Lomb is conducting a voluntary recall of certain lots of Biotrue® contact lens solution, ReNu® MPS Multi-purpose solution sensitive eyes, ReNu® MultiPlus contact lens solution, Boston® cleaner, Boston® conditioning solution, Boston® Simplus Multi-Action contact lens solution, Sensitive Eyes® contact lens solution, EasySept® contact lens solution, Ophtaxia® eye wash solution, Sensitive Eyes® eye lubricant solution and associated private label brands that were manufactured at its facility in Milan, Italy. These lots are being recalled from consumers, pharmacies, eye care professionals, retailers, distributors and wholesalers.
 
This voluntary recall is being conducted in Europe, Middle East, Africa, Russia/CIS, Hong Kong and China, although the certain lots of Ophtaxia® eye wash solution are only applicable to France and Hong Kong, and Sensitive Eyes® eye lubricant solution to Hungary, Bulgaria and South Africa. Additionally, the only product being recalled in China is Boston® Simplus Multi-action contact lens solution.
 
This voluntary recall follows a notification received by Bausch + Lomb from one of its third-party suppliers in Milan, Italy, which sterilizes some components (bottles, plugs and caps) of these products prior to manufacturing in our facility in Milan, Italy, of a compliance issue with its sterilization process. Bausch + Lomb is one of many companies impacted by this situation.

The health and safety of everyone who uses our products is our utmost priority. While there is a low risk of infection with these products, Bausch + Lomb has chosen to voluntarily recall these certain lots  of products because we cannot confirm the supplier’s conformance to process compliance requirements for some of the components of these products. No serious adverse events have been reported to date in association with this issue.
 
No other Bausch + Lomb products or lots are affected by this recall.

Retailers, pharmacies, eye care professionals, distributors or wholesalers who have purchased products directly from Bausch + Lomb, please click here for more information. If the products were not purchased directly from Bausch + Lomb, customers are asked to contact their re-seller to return the product and discuss exchange or refund options.
 

Consumers who may have these affected products in their possession should take the following steps:

  1. Insert your product lot number below to verify if your product is impacted.
  2. If the product is impacted, stop using the product.
  3. Follow the instructions to register your product. 
  4. After following all instructions, discard the impacted product.

How to find my lot number
See below an example of the bottle and carton labels, which contain the lot number and expiration to easily identify the product. 

There is also a pdf listing all the products affected here.

In summary, the affected products are:

Biotrue® multi-purpose solution (60mL, 240mL, 300mL)
Biotrue® multi-purpose solution flight pack (60mL, 2 X 60mL)
Biotrue® multi-purpose solution (2 X 300mL, 4 X 300 mL)

ReNu® MPS multi-purpose solution sensitive eyes (60mL, 120mL, 240mL)
ReNu® MPS multi-purpose solution sensitive eyes flight pack (60mL, 2 X 60mL)
ReNu® MPS multi-purpose solution sensitive eyes (3 X 360mL, 4 X 240mL)
ReNu® MultiPlus multi-purpose solution fresh lens comfort (60mL, 240mL, 3 X 360mL, 4 X 240mL)

EasySept® contact lens solution (120mL, 360mL, 3 X 360mL)

Sensitive Eyes® contact lens solution plus Saline (500mL)FSCA Ref: CAC-2021-005

Boston® Multi Action Solution Special Flight Pack SIMPLUS (2 X 60mL)
Boston® SIMPLUS Multiaction Solution (120mL, 4 X 120mL)
Boston®/Boston® ADVANCE Cleaner (30mL & 4 X 30mL)
Boston®/Boston® ADVANCE Conditioning Solution (120mL & 4 X 120mL)
Boston® ADVANCE Cleaner Conditioning Solution Multipack (1 X 120mL + 1 X 30mL)
Boston® ADVANCE Cleaner Conditioning Solution Starter Kit ADVANCE FORMULA (1 X 30 mL + 1 X 10 mL)

Boots Pharmaceuticals Contact Lens Solution (240mL)
Boots Pharmaceuticals All in One Solution (60mL, 240mL, 360mL, 2x360ml)
Boots Pharmaceuticals Advanced Conditioning Solution (120mL)

Specsavers easyvision ultrapurpose MPS (60mL, 3 x 240mL)

Boots Pharmaceuticals Enhanced All in One Solution (360mL)
Boots Pharmaceuticals Advanced Cleaning Solution (30mL)
Boots Pharmaceuticals Advanced Cleaning and Conditioning Solutions (3 x 120ml + 3 x 30mL, 1 x 60ml + 1 x 15mL

Cross Linking in Wales

For the past few years our group has been working with health professionals in Wales where until now, apart from very exceptional cases, it has not been possible to have Cross Linking (CXL) performed by the National Health Service. However, at last we have some good news to report.

Health Technology Wales has just issued revised guidance for the use of CXL. Their original report on the topic in 2018 stated that there was insufficient evidence(!) for CXL to be used by the NHS in Wales. The revised guidance now states –

“The evidence supports the routine adoption of corneal cross-linking (CXL) for children and adults with progressive keratoconus. Compared to standard care, CXL slows disease progression and may improve visual acuity. It may also reduce or delay the need for corneal transplantation.
Economic modelling suggests that CXL is cost effective on the basis of an assumed sustained clinical benefit for at least 14 years.”

This now needs to translate into CXL being offered in Welsh hospitals (at the moment, only Singleton Hospital in Swansea does) and that is a decision for the Welsh government. Let’s hope that follows swiftly!
You can read the full guidance (which includes a submission from the Keratoconus Group) …Here

Update from Anne Klepacz-

I have now had some feedback from my contact at HTW –


“Thank you so much for your contributions to this appraisal – our appraisal panel were particularly moved by the testimony provided from the patient group and have asked me to pass on their thanks. I think this is such a great example of how important this work of engagement with patients and groups such as yourselves is for health technology assessments.”

So I in turn would like to thank all our members and forum users who have talked and posted about their KC experience and more recently their CXL experience. Without your voices, we couldn’t have contributed to the review (it’s just a shame that we weren’t consulted back in 2018!)
You’ll find our submission right at the end of the report, in Appendix 4.

Corneal cross-linking is effective in treating young keratoconus patients

clinical trial in 60 keratoconus patients aged 10-16 years old, most of which were based at the NIHR Clinical Research Facility at Moorfields Eye Hospital, found that a treatment for keratoconus, known as corneal cross linking, was effective at stopping its progression in young patients.

We shall be hosting a presentation of the results of this trial on 9th October 2021, details to follow.

Keratoconus is an eye condition where the normally round, dome-shaped, clear front window of the eye (cornea) progressively thins, causing a bulge to develop. This eventually impairs the ability of the eye to focus properly, potentially causing progressively worsening vision.

It is known that corneal cross-linking treatment can halt keratoconus progression and stabilise vision in adults, but until now we didn’t know the effectiveness of this treatment in young patients. This is particularly important as keratoconus is known to progress faster when the onset is in childhood and early teen years. The results of this study show that treating these younger keratoconus patients with corneal crosslinking is effective in arresting the progression of their disease. The clinical trial results represent evidence previously unavailable which strengthens the cases for making cross-linking available throughout the UK, which at present it is not.

A patient, Anne Klepacz who was the lay representative on the study, through her role as trustee of the Keratoconus Group charity said: “It is very exciting to have the results of this study, giving hard evidence of the effectiveness of corneal crosslinking in young people, and providing reassurance and clarity for both parents and young people with keratoconus. We hope the findings will result in crosslinking becoming widely available throughout the UK.”

Frank Larkin, consultant ophthalmologist at Moorfields Eye Hospital, said: “Our findings suggest that corneal crosslinking should be considered as the first line treatment in progressive keratoconus in young patients. It will be interesting to see the longer term impact of this treatment for these patients and if it means the patients won’t need to wear contact lenses or have a corneal transplantation in later life.”

This post was copied from the Moorfields website

To read the technical details of the Keralink trial click – here