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Macular Society
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AVASTIN

What do you think of todays news about Avastin. It might save the NHS a lot of money but is that a good enough reason to use old technology. Would you like to go back to dial-up internet if it was cheaper?

It would be interesting to hear what our American members think.

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I am not sure that avastin is much different from lucentis or eylea. The basics are the same. It is just that avastin comes in larger phials, suitable for cancer treatment instead of small ones for eye treatment. The manufacturers of this drug have so far refused to produce smaller amounts suitable for eye treatment. This means that another company will transfer the drug into smaller phials, which may increase the risk of contamination and thus infection. In fact, this has actually happened. Avastin was used before lucentis and eylea was developed. Also: I have heard that some patients' treatment has been changed from Avastin to one of the other drugs because it was no longer working. They did not mention that on TV, only how many millions the NHS can safe. Is that where we are heading for?

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Yes, obviously it would be a big saving for the NHS but would it be good for us? I have previously read comments by Americans and the big plus seems to be cost. When I saw the headline on BBC News this morning - it said Alvastin Wins. That sounded to me as if it had been approved for use here. Now I am wondering if that really is the case or the usual headline grabbing of the media.

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I have just seen this on the BBC news. It made me panic as soon as I heard the headline. Came on here straight away as I thought someone would be talking about it. Obviously when it is your treat ment to save your eyesight the cost to the NHS is well worth. We are all truly grateful but the thought we could be put at risk to save money just causes more anguish. Am I right in thinking that at present our treatments will stay the same? I was getting too flustered to listen properly. 2468G

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Hi 2468G, I am hoping that someone who knows the whole story is going to post. We all know what the media is like these days. There must be a lot of worried people out there at the moment.

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I went straight from 0 to 60 im afraid Bobbie and then started wittering to my hubby instead of listening. I'm sure full story will get posted.

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I am very concerned.its hard enough coping with eye injections without wondering whether any new Drugs used will be safe or as effective.you can't put a price on your eyesight

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Agreed. We really don't need this additional stress.

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U.K....Eylea costs £800...Lucentis costs £561...Avastin costs £28

U.S....Elylea costs $1850 or £1416...Lucentis costs $2000 or £1531...Avastin costs $50 or £38

U.K. government cuts a better deal on AMD drugs than U.S. government.

My ret doc put me on Eylea after Avastin showed a big change in OTC. She said Eylea was better for "bumps," but it has not made any difference to my OTC's.

The only reason I'm staying on Eylea is that it's free because my retiree health insurance pays for it otherwise I'd be on Avastin. I request and receive an Eylea injection every 5 weeks which I believe is the key to not losing my central vision after 21 months. I've never had spacing more than 6 weeks, so I'm not taking any chances on spacing more than that.

The only risk of Avastin seems to be the rare contamination by the "middle man" (compounding lab) when they break down the large "cancer Avastin" to the smaller dose "AMD Avastin." On the other hand, drugs Lucentis and Eylea are received by the clinic from the manufacturer in the proper dose.

click blue lettering below for an interesting article:

chicagotribune.com/news/opi...

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Thank you for your post Kevinaki. Very interesting. I am staggered by the difference in prices. I think you are very wise having regular injections. I lost central vision because of massive bleed in one eye and a slightly lesser bleed in the other that left it badly damaged. This happened after a break of about 5 to 6 months. The Consultant I saw on my first visit, and haven't seen again in nearly 3 years, did not think it worth his while to see me, when this disaster happened. We might get these expensive injections free on the NHS but have no control over how often we have them.

Ayayay also mentioned about the possible contamination of Avastin by the middle man. If UK did use Avastin, perhaps they wouldn't be tempted to space out time between shots so often. Once the damage is done, there is no turning back.

Good luck to you with future treatment.

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I copied this from the Guardian . Apparently they will try it in the North/East of England first.

“We are concerned that patients will be anxious about what this means for their treatment. It is critical each patient has the opportunity to have a full discussion with their clinician to give consent prior to switching or embarking on treatment”, said Helen Lee, the charity’s policy and campaigns manager.

“We know that some patients are permanently losing vision due to delayed and cancelled eye care appointments as services are struggling to cope with demand, so all savings generated by providing Avastin rather than licensed anti-VEGF drugs must be invested in eye care services.”

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I also am concerned that cost is more important than using the best to save eyesight. I am in the East of England and awaiting review after loading dose of eyelea. Should know more next week but will not be amused if they want to use avastin instead.

Pink Perfection

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I am in north east england and would need a lot more information before I would agree to change to Avastin from Eyelea which I have had for the last five years. I am not convinced that the cheaper drug will alleviate the huge burden on the nhs as I believe the number of staff needed in this area costs more. I could be wrong, I don't have statistics.

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I had Avastin in the UK at a time when nothing else was licensed for Myopic Macular degeneration and I was given it as my only option. It worked well, restored my lost vision and gave me an extra year of useful sight in that eye. When I had a second bleed two years later Lucentis had been licenced for myopic macular degeneration. Lucentis has never been effective for me. In my opinion , the more options there are, the more people can be helped. For some Avastin will be the preferred option. Novartis and Bayer (who make Lucentis and Eyelea) have been exploiting the NHS and patients for too long.

I do wonder though, how and who can fight to ensure that any potential savings can be ploughed back into massively overstretched eye clinics instead of covering an overspend elsewhere in the NHS.

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Very interesting to hear of your experience Ceri2. Today has made my head spin. It doesn't seem right that these companies make such massive amounts of money out of the NHS. There has to be a better way for patients and the NHS.

I think we will all be asking our consultants a lot of questions at our best appointments.

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The producers of Lucentis and Eylea claim that the surplus money they gain is used for research into more or better eye treatment drugs. The producer of Avastin will be interested in cancer treatment rather than eye care. And at such low cost - would there be anything left for research?

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Ah right. In that case it would be money well spent. I hadnt thought of that. We all are looking for improved treatments. Thanks for that ayayay.

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The doctor I saw knew nothing about Avastin being given the ok to treat AMD so that was a good start. Anyway seems like they are going to continue the eyelea despite the fluid not clearing (See previous message) I guess it could be another option for me but as said previously getting the appointments is a major problem for me.

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Hi pinkperfection. Just replied to your previous message as you will have seen. I think it was Lucentis they were talking about trying on me if the Eylea hadn't worked not Avastin.

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My wife & I are in the USA. For some info on USA costs, Avastin, when used as a cancer treatment, is almost $2000 a dose. It is cut 40 times for eye treatment & that is where the $50 price comes from. Eylea is $1850 a dose in the USA due to the patent laws in the USA that allow the recovery of R & D costs as well as recovering the very expensive cost of getting FDA approval.

My wife has had WMD in one eye for 23 months. From the 1st shot in April, 2017, she was being treated with Avastin. The Retina Specialist said to use Avastin as long as it worked. During this time, after 4 or 5 shots, each at 4 week intervals, it was decided to try extending the intervals. A 5 week interval was OK; a 6 week interval was OK for 1 interval, but there was deterioration after the 2nd 6 week interval, so the shot was returned to every 4 weeks. This increase in interval was tried a 2nd time after 5 shots at 4 week intervals and it again failed after the 2nd 6 week interval. So she returned & stayed on the 4 week interval between shots of Avastin.

At the June, 2018 scan, after a 4 week interval of Avastin, there was no improvement & even a tiny bit of deterioration. At the July, 2018 scan, there was marked deterioration after a 4 week interval, so she was immediately switched to Eylia for the July shot. 4 weeks later, August 2018, the scan showed improvement, so she got her 2nd shot of Eylia. 4 weeks later, September 2018, the scan showed a huge improvement (better than ever obtained with Avastin), so she got her 3rd shot of Eylia & the Retina Specialist extended the interval to 5 weeks for the upcoming October, 2018 shot.

In summary, the Avastin worked well when given every 4 weeks for 20 months, but then failed to work & my wife had to switch to Eylia. In 2 shots, 4 weeks apart, the Eylia improved her WMD better than Avastin ever did. She continues to see even more improvement in her vision after the 3rd shot. We are just praying the Eylia does not eventually fail to work like the Avastin did, but only time will tell.

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Thanks for sharing I got switched from lucentis to eyelea too, hope your wife goes on ok good luck.

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I wonder if this decision will force those companies to bring Eyelea and Lucentis down to a more competitive price? I started on Avastin but was moved on to Eyelea when I moved to a different health board after moving house. The biggest difference I found was that Avastin had to be administered by a consultant at the hospital and Eyelea can be administered by a nurse... Guess which one was more efficient and pleasant!

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Hi, I think that it's great news that they'll use Avastin. 7 years ago I had a bleed and lost the central vision in my right eye. The hospital I was treated in was using Avastin back then. Their rationale was that they could split the dose/phial into small enough doses to treat multiple patients at a cost of about £50 a time instead of about £1050 a time. It allowed them to treat patients who would otherwise have been refused treatment.

Mine is a very happy story, I had the 3 initial injections 4 weeks apart and it stopped the bleed and restored my sight back to how it was before. As I was only 45 at the time, they think my age played a part in getting such a fantastic result.

I even wrote to my local MP when primary care trusts were being sued over the use of Avastin and got a reply from the Health Secretary. You can't underestimate the impact the treatment can have on lives and everyone should have the chance to get treatment.

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That is great news so pleased for you.

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Hi Alinai, Glad That Avastin worked well for you too. Interestingly at a similar time and age as it worked well for me. Can’t help thinking that a lot of the scaremongering will be led by the other drug companies, not really worried about our eye health at all but worried about a drop in their shareholders profits. Increased choice and alternatives can only help those of us that have the many other less common types of macular degeneration. Avastin is approved for eye use across the world. A friend has been involved in the fight for NICE approval for Eyelea for Myopic Macular Degeneration, which was being withheld until a few months ago. More options for more patients is massively important and the drug companies aren’t helping with that at all.

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Well I suppose lucentis and Eyelea will have to be competitive or go bust so let's hope prices will be dropped. It is virtually the same as lucentis, not so sure about eyelea as is thought to work over a longer period and on the placental factor, a bit different than the others. If more people can be treated that is surely a good thing.

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From my reading, I believe the main side-effect problems relating to Avastin are the problems with dose splitting and the use of syringes intended for injections into the body being used for injections into the eye. There are, apparently, a number of lawsuits taking place in regard to these issues:

schmidtlaw.com/avastin/

There are other issues, well, one at least, that I've found relating to how much of the drug gets into the bloodstream, how long it stays there and what it does there:

"Despite the similar visual outcome in many of the head-to-head comparative trials of bevacizumab, ranibizumab and aflibercept in wet AMD, there are significant differences in the molecular structure of these agents, resulting in very different PK [pharmacokinetic] profiles, such as systemic exposure after intravitreal injection."

"The results we report here show differences among the three main intravitreal VEGF inhibitors in their systemic PK and pharmacodynamics that may provide biological plausibility for potential differences in systemic safety risk."

This paper also provides the informtion that:

Bevacizumab is a bivalent monoclonal antibody

Ranibizumab is a monovalent monoclonal antibody fragment

Aflibercept is a fusion protein

bjo.bmj.com/content/early/2...

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Several years ago I contracted wet amd and was treated with Lucentis. This did not work for me and I lost the sight in my right eye central vision. Later I contracted wet and in my left eye. I went to a different hospital on the advice of my optician and was immediately given Eylea injections. This was about 4 years ago to date I still have 20/20 vision in my left eye and still have check ups and injections as necessary. I certainly would not want to change to a different injection.

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Ironbrain has made the comments I was going to. But with more detail - thanks!

For me the key is that avastin was not developed for the eye and I would ask for the following IN WRITING from my consultant were they going to put me on it :

1. Confirm that the formulation is not detrimental to the eye ( beyond the known side effects of lucentis and eyelea) nor will it affect any other part of my body.

2. Confirm that the preparation of the formula into correct eye dosage is being done under regulated controlled aseptic conditions, by a company with an accredited quality management system, and that procedures are in place, and have been / will continue to be, checked regularly to ensure that no silicon or other adulterous substance will be in the syringes used to inject me.

3. Any additional risks to me to form part of a new patient consent form fully detailed and documented.

NICE ought to be ensuring this of course but I am cynical and would not assume they have. Perhaps the Mac society can obtain official assurance from the government for us?

It's really just the impact of the larger molecule size and the risks of reprocessing into eye appropriate syringes that bothers me, the substance itself seems to work as well as the others from what I've read.

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Eyesright I think you are worrying yourself unduly. I had many shots of Avastin over at least 2 1/2yrs. There was no difference in the way it was administered or its after effects for me at least.

The molecule size makes no difference to how it feels when injected. A dr friend who was also having the shots felt that due to the larger molecule size that it might remain active in the eye for longer.

That did not happen in my case both A and L were/are given at 4week intervals.

It is a case of horses for courses from what I have gleaned over the years one drug will work for some and not for others only a trial will show which is better.

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Hi rennatk, I'm not worried at all. Would just want formal acknowledgement from my consultant on the points I listed. Because I know how the nhs can get apparently obvious things wrong ( eg my hospital was cited as not properly sheathing / cleaning vaginal ultrasound probes between patients...). Re the molecule size, I didn't think it would affect how the inj feels, but if the others are formulated differently there presumably is a physiological reason and I like things to be explained to me in detail lol.

Glad it worked for you, as you say, horses for courses and I would not deny anyone the chance to have something which may save their sight.

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I don't see that it makes any difference that the drug was developed for something else, you might be surprised how often drugs get switched around. The most famous example is that aspirin is no longer prescribed for aches and pains but to prevent blood clotting, Avastin has passed all the extra tests to be registered for ocular use elsewhere, no reason to suppose it wouldn't pass them here.

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Hi stokeysue, as a qualified ( retired) pharmacy technician I'm fully aware of drugs being used with success for other than their original intended purpose. As I've said, avastin appears to be used successfully to treat the eye. I have no issue with that and its great for anyone helped by it. I have no knowledge of its licensing outside the UK and am not motivated to go check as its unlikely to be a treatment offered to me. My point about the formulations is simply that I personally don't know why molecule size differs between them nor what the physiological implications of that are, and I personally would want someone in a position of authority to explain it to me. When I was researching lucentis and eyelea after my initial diagnosis I recall that i came across a report that suggested that avastin hadn't been licensed for use in the eye in the UK due to the molecule size - I have no idea as to the validity of that report, plus it was some years ago now, hence my personal preference for having an ' expert' provide me with accurate up to date information.

I'm not saying its a bad thing to give avastin for eye conditions, I'm just saying I don't know enough about it. Any help to prevent sight loss is to be welcomed and if this drug helps then that's fab!

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From my admittedly limited knowledge ie as a patient, I would be very surprised if using Avastin after Lucentis or Eyelea produced any benefits. I have only encounted it being used prior to the other anti-VEGFs. As a first trial or series it might work but most of us appear need to gravitate to other means eventually.

Roll on the 3 alternatives currently being tested.

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I was one Avastin for many months. It was definitely helping my WMD. However, I got a permanent silicone

bubble in my eye from an Avastin shot. I believe this is because of the delivery system used in the US for Avastin - which is a stick-on needle, held in the syringe by friction. Eylea comes in in a syringe with a screw-on needle, in the US, which I believe is more secure, and less likely to allow the silicone lubricant to

ooze out onto the surface of the needle, and then into the eye. I am certainly no expert, but from what I have read, that is what I believe. My intervals for inj lengthened with the Avastin over time. However when I switched to Eylea, the intervals

became even longer, and it seems to be working as well or better.

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Very interesting JIHM. After a year of having Eylea, one doctor told me he was not happy with my results and Eylea was not working for me. On my next visit to the hospital I really expected to be told that they would try a different drug. Nothing changed. When I lost central vision about a year later, I sent an email to the Consultant with a few questions - one of the questions I asked was about this doctor's comment. I suggested that an appointment with him (the Consultant) would be appreciated. The reply I got just answered one question. I wanted to know why my record said SUSPECTED AMD. He said that was what I came in with and it couldn't be changed!! If I had any other questions I should ask the duty doctor who could then ask the Consultant. Obviously a busy man - only ever seen him once on my first visit. Now I read about others who have tried different drugs, sometimes with great success. Who knows, maybe Avastin might have saved my sight. Rant over.

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Sorry, this reply was intended for Rennatk. Sight let me down again!!!

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As I understand it the needles which have silicone on them as a lubricant are intended for use by diabetics and most certainly not for intraocular use. They are a money saver for the practitioner. Currently, there is at least one Class Action case being taken in the USA as a result of their misuse.

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Yes, you are right, Rennatk. There are class action suits about the silicone injected inadvertently into people's eyes. However, all the syringes of all the various types made by the largest maker of syringes in the US are lubricated with silicone lubricant, not just the stick on ones made for diabetics.

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I am in the UK. My condition is slightly unusual ie cystoid macular oedema due to radiation from a ruthenium plaque however, the resulting condition is similar to wet AMD and other blood vessel damaging causes.

Avastin and Lucentis are essentally the same drug but Lucentis has been “engineered” to have a smaller molecule size.

Initially, I had fantastic results with off-licence Avastin going from blind for over 2yrs to the max possible vision given a blind spot caused by the radiation. After around 2 1/2yrs Avastin began to fail me and the oedema increased.

Of his own volition my retinologist tried Lucentis, the results were impressive, within 2 shots at 4 week intervals the swelling decreased to a few microns. To date, I have had 83 shots of one or the other but Lucentis us now showing signs of failing. A trial with Ozurdex gave some benefit and some disbenefit so, I am now back on Lucentis.

The initial Court actions relating to the use of Avastin for wet AMD were against South of England Patient Trusts several years ago. But I lost track of what was happening there. I was surprised to learn of the NE England case.

In the earlier instance I wrote to Novartis expressing my concern that its restriction would render me blind once more and receive prompt and encouraging responses assuring me that they had no objections to the use of Avastin for my condition and were only pursuing its off-licence use for wet AMD.

Incidentally, the clinic I attend splits down the Avastin itself, 7yrs ago each shot cost just £9.

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Hi Bobbie and everyone else who is interested.

I have done a little research and found that Avastin sold as a cancer drug is quite expensive. In fact it is called "extortionate" in some articles. The reason for that will of course be partly the larger amount of the drug needed for cancer, but also because the manufacturers are licenced to sell the drug as such, unlike the Avastin we would use. Just because one judge in the UK now has allowed the drug to be used does not mean that it is now licenced and the manufacturer would still not be liable if anything went wrong, though the NHS would have to be.

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I heard that on the news yesterday and immediately wondered if...

1. Local Health authorities will just decide Avastin is the only drug available to use in their area?

2. Will we be given the choice of staying on Eylea?

3. Will Avastin have to be given more frequently than Eylea?

I have been given 6 doses of Eylea now and it works very well for me, having now been put on an 8 week repeat schedule.

While I appreciate it will save a lot of money swapping to Avastin; I am a little concerned that Avastin will not work as well. 'The devil you know' concept.

My own idea of these drug companies that charge ridiculous amounts of money for their product is that it's simply done for profit for the shareholders; despite all their excuses.

When will Eylea come out of patent so that others can produce it cheaply?

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Hi!

Could you link to this news? I will try to google and see what I find. Thanks, Linda

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This is one link from BBC. bbc.co.uk/news/health-45600433

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Bobbie915, as an American with Medicare and Supplemental health insurance, I can get Eylea . I was getting Avastin for 8 injections until I learned about the multiple doses needed from one vial to get the dose of Avastin. I have a compromised immune system and try to avoid infections. My doc should have advised me to take Eylea due to this. Now I have a wonderful retinal specialist who started me on Eylea and there is great improvement. A persons eyesight should be a MAJOR priority before any money saving with Avastin! I would gather thousands, who agree, to sign a petition, or start a protest if the NHS decided to go with Avastin. Loud noises do get attention. Good Luck to you!

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Thanks Randy. I would also be concerned if there was a chance of infection. I had a triple by-pass 10 years ago and catching a simple 'cold' affects me very badly. You are so right - loud noises do get attention, we have more than our fair share in this country!!

Best Wishes.

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As an American follower, I haven’t heard the news about Avastin. I do know it is the cheapest eye injection med here already. It did not work for me though and neither did lucentis, both much more expensive than eyelea and it is only holding my eye for 28 days ( strangely, the amount of time between injections approved by Medicare here). What is your news about avastin? Do they have a replacement for it yet?thank you for updating me on this.

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Hi Arwmd, I have posted a link to the BBC News, above. Hope it works for you.

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thank you so much for posting your referenced article. Based on the information in it. , it is easy to see how the originating drug company created an opening for opportunistic drug companies to exploit the lack of protection of Avastin for wet macular degenerstion. However the idea that one drug fits all eye conditions, even with the same diagnosis, is utterly ridiculous! There is just too much variation from patient to patient reaction to this drug ( or the other two) to standardize treatment! Is that why policy makers are talking about patient-choice? Also I wonder if this move is connected in any way to the new drugs that are being trialed here (USA) and abroad (Denmark?) one of the drugs is working its way through the administrative approval process now. ( I have to find out it’s name). It is a hopeful note which we need at this point .

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Novartis brolucizumab (RTH258).....Novartis announced new positive data in neovascular age-related macular degeneration.

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I have had about 25 Avastin injections for myopic MD, in the UK.. Works for me. And I would no more dismiss it as "old technology" than I would dismiss anything else that has been proven over time to work well - the bicycle for example,

We have not had the problems with the repackaging here that they had in the US, no reason why we should - if it is done correctly it is done correctly,

Having worked for many years in drug development, I find the research cost argument interesting, Yes, pharma needs to make a profit over and above the cost of manufacture and distribution to plough back into development - it paid my salary for 40 years. But in this case I find the argument disingenuous. Avastin came first, Lucentis is simply a cut down version of the Avastin molecule, made from the same antibody. There are theoretical reasons why the smaller peptide might be better, but I don't think from what I have seen and heard that these benefits are realised in practice, though some people undoubtedly do better with one rather than the other, it seems to cut both ways, As quite a lot of the development cost for Lucentis had already been spent on Avastin, I really don't think you can justify an extra £500 on Lucentis for R&D.

If the manufacturer had packaged Avastin for intraocular use and submitted for registration here, then everyone would have been happy. They could have charged quite a lot more than £28 for a ready to use dose, everyone knows that registration costs money that must be recouped, and we would also pay for the confidence in having it put into the syringe by the manufacturer - like buying original manufacturer spares for an expensive motor vehicle to be sure of quality and safety

But Novartis' argument seems to be that Avastin should not be prescribed for macular disease because it is not registered in the UK, not because it is unsuitable for registration - after all, it is registered elsewhere. To me that is a very unpleasant, dog in the manger, attitude,, And it seems to me they have shot themselves in the foot by not taking the chance to make a profit by selling Avastin intraocular shots at a lower profit than Lucentis but still a significant revenue stream

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