KC Coffee Morning on Zoom

Our next meeting will feature a presentation from Howard Maile.

Howard will talk about his work  identifying risk factors  for progression of keratoconus from first presentation, enabling better informed decisions about which patients should be offered crosslinking and at what stage.  He will also talk about the second phase of his research, which is looking at how machine learning could improve the detection of subclinical keratoconus (before there are any obvious symptoms) leading to earlier diagnosis

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.

You will need to download the Zoom App to your computer or tablet. Then send an email to Chair@kcgroup.org.uk. On receipt of that email, I will send you a link which you will be able to click at the allotted time and as if by magic we should all appear on the screen.

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.

I 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.

Click here to verify whether your product lot number is impacted


Click here to 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

Sight Village – Exeter

At last we have our first post Covid live event in the diary.

It will take place on 14th September at Sandy Park Stadium, Exeter.  Doors open at 10am until 4pm and entrance is FREE!

Pre-registration will be required and can be done via the link below or by emailing the organisers at sv@qac.ac.uk or calling one of the team on 0121 803 5484. Click the link below for more details:

Sight Village Event Information
Tuesday 14th September 2021

We are keen to get to know our members in the South West so please come along and introduce yourself and perhaps talk to others enquiring about Keratoconus.

Genetic study uncovers hidden pieces of the keratoconus puzzle

Many of our members have been following this study. It has been carried out University College London (UCL), Moorfields, Kings College London and other national and international collaborators and is aimed to investigate the key unsolved questions surrounding keratoconus. Indeed quite a few of our members took part in the genetic study and Stephen Tuft of UCL has thanked the KC Group for its support. You may remember Dr Alison Hardcastle gave an excellent presentation of their findings at our 2019 AGM as reported in our Summer newsletter that year.

The good news is that the latest results from this project have now been published and these are summarised in the the Moorfields Press Release –here

For those with a scientific bent, you can read the full 13 page technical paper – here

Sight and Sound Technology

We would like to thank Sight and Sound for hosting the following webinar for us specifically tailored towards keratoconus. The webinar looks at four scenarios taking people at different stages of their lives and demonstrates how technology can support them. The webinar is a mix of real time demonstrations and presentations showing the technology in use.

You can get more information by visiting their website or contacting Glenn Tookey at: glenn.tookey@sightandsound.co.uk or by phone on 01604 798070 or 07776141516.

You can also discuss the recommended products with other members of the KC Group on our Forum.

Fight for Sight – Small Grant Award

This is an excellent arrangement whereby Small Grants of up to £15,000 are awarded for research. Fight for Sight forms partnerships with charities like ours, each providing 50% of the funding. The advantage for Fight for Sight is that the charity’s involvement helps direct the investment into projects that are likely to be cost effective and beneficial. From our point of view it enables the KC Group to put the donations we collect to good use in the secure knowledge that Fight for sight will handle all the financial and compliance controls. Fight for Sight also ask an independent panel of experts to assess the applications for funding.

The object of our latest partnership is to develop a lab-based laser tool that is compact and portable, and therefore easier to use in both a lab and clinical setting. The tool will detect/monitor subtle biomechanical structural deficits that occur during early-stage corneal disease progression; specifically, localised thinning of the cornea.

Here is the text of the full Press Release:

Researchers at Loughborough University will work together with experts in the ophthalmology field to develop a lab-based laser tool that is more compact and portable, and therefore easier to use in both a lab and clinical setting. The tool will detect/monitor subtle biomechanical structural deficits that occur during early-stage corneal disease progression; specifically, localised thinning of the cornea.

It is anticipated that the outcome of this project will mean that patients can receive treatment to maintain and restore their vision sooner. Ultimately, this will also have considerable impact on addressing the national and global cornea transplant shortage. 

Dr Samantha Wilson is leading the project at Loughborough University. She said: “The ability to understand, detect and diagnose corneal diseases, including keratoconus, at an earlier stage would mean that patients can receive treatment sooner. In the long-term, we expect that such devices will be routinely used by surgeons and ophthalmologists to detect, diagnose and treat corneal diseases before they have a significant effect on vision.”

Philip Jaycock is a Consultant Ophthalmic Surgeon and collaborator on this project at Loughborough University. He said: “The development of devices that can measure the strength of the cornea will help earlier diagnosis and allow further investigation of new treatments to maintain vision and potentially improve vision for patients with keratoconus.”

Chief Executive of Fight for Sight, Sherine Krause, said: “We’re delighted to be funding this valuable research project. We know that early detection is hugely important for sight-threatening eye conditions and this in turn will lead to better outcomes for people with keratoconus and other corneal diseases. Eye research is more important than ever in the age of the Covid-19 pandemic and we must continue to fund research for new, more efficient tests, treatments and cures for the leading causes of blindness and sight loss.”

Chairman of The Keratoconus Self-Help and Support Association, David Gable, said: “Late diagnosis is one of our greatest concerns. There is now an effective treatment known as collagen crosslinking that can stop the progression of the disease, thus avoiding the necessity of specialist contact lenses and transplant surgery. We are happy to fund this important research into the early detection of the condition.”