Pharmacies that supply Eylea to doctors are now, rather suddenly, paying a higher price for each dose of Eylea. They are billed over $460 more per shot - bringing the total to $2,776. The end result, at least for those who have the same health insurance I have, is an increase in cost for each patient of about $89 per shot - bringing the total to about $357. The charity that usually supplements these costs for patients is now bound to be strained.
Cost of Eylea goes up in the US: Pharmacies... - Macular Society
Cost of Eylea goes up in the US
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Jihm
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I wonder how long that will take to get here then, not long probably. I hope it doesn't impact the frequency (and/or the opportunity) of having them (when the appointments get back to normal).
Maybe it won'r even affect the price in the UK. Although that is perhaps too optimistic.
Yes, it probably is. 😁
NHS get the drugs from the company that agree a price between them selves which is not changed.
Hi Jim, I live in the USA, had my first Eylea injection on March 10, and they are keeping my April 16 appointment for the 2nd injection, thank goodness.
Maybe that’s because I have CRS in my other eye, and my dr. said he thinks we caught this WMD in the early stages. Whether he was comforting me or not, I do not know, but I am trying to be hopeful.
I checked billing, and saw the cost to Medicare was $2116, Medicare approved paying $1659, and I am pretty sure my health insurance will pay $428, and I will be billed for $34.
I have read Avastin injections are only $60.00........HUGE difference in cost! but it has more chance of infection because it does not come prepackaged, has to be precisely mixed, and it is labeled “off brand”, whatever that means.
Question: do you usually have the topography scan before each injection?
Many thanks for your input.
Joan in USA
Interesting price disparity, Joan! Thanks for the info. I received the inexpensive Avastin shots for a long time, until I got a silicone bubble from one. Then I asked to be switched to Eylea because of less chance of more silicone getting into the eye. The pre-loaded syringes in which Avastin came to my doctor were the type that was much more likely to have the silicone lubricant get on the needle and into the eye. They were designed for other medical purposes, where some silicone getting on to the needle did not really matter. The Eyelea is administered with a safer type of syringe in that respect. My eyes are imaged every time I get a shot to determine the length of time between shots. I do not know if it is called a topography scan.
Best of luck to you!
Yes, it really is terrible to see the HUGE price difference between the cost of Avastin and Eylea! For me, with only one good eye, it would be worth it to pay for the absolute BEST medication in order to prevent infection or the chance of experiencing the silicone bubble!
I am hoping my doctor will be like yours, and do the OCT scan (Optical Coherence Tomography) before each injection. I think that test measures the amount of liquid under the macula, and the dr. can make comparisons to evaluate if Eylea is being successful in stopping the progression. From all i have read, once WMD starts, you cannot eliminate it, but injections seem to work pretty well in preventing more leakage.
Just curious....has an immediate family member of yours had WMD?
I know my mother had it, and have heard this is a genetic condition.
Again, many thanks for your message.
My late mother did have it. That was many decades ago. So, that is likely why I developed the condition, Joan.
Hi Joankelly. I will try to answer some of your queries. Avastin is a drug used to treat certain types of cancers. Over the years it has been discovered that Avastin, in much lower doses, can help treat WMD. Since this is not the PRIMARY use for Avastin, to use it for WMD is why this use is considered "Off Label", just like, for example Hydroxichloroquine, a drug developed to treat malaria, is being used "Off Label, to treat Covid-19.
The problem is that the Avastin must be cut 40 to 1 for an eye injection and this is done by 3rd party distributors/sellers, so there is no guarantee it is cut correctly, it is done in a sterile environment, or shipped correctly. Also, that is why the Avastin is only $50 to $60 a shot - because the actual drug is cut 40 to 1 to use for eye injections.
Avastin must be given every 4 weeks to be effective against WMD, while Eylea extends the interval for many patients to anywhere from 6 weeks to 16 weeks & even longer in a few patients (after the initial loading dose of 3 shots at 4 week intervals). I used to get Avastin injections every 4 weeks, but after about 15 months, the Avastin stopped working on the WMD, so my specialist switched me to Eylea, which I have been on for about 2 years. Unfortunately, I can only go 7 weeks (8 in a pinch) between injections (not as lucky as other patients) or the bleed starts up & my vision quickly deteriorates again. Also, though Eylea can come pre-loaded in a syringe, it can also be shipped to the doctor in a small bottle for the doctor to load into the doctor's own syringe. My doctor gets it delivered to him this way just to make sure I get a non-silicone coated syringe as I am not a diabetic, so he wants to take no chance that the pre-loaded syringe might be silicone coated.
I am also in the USA. I get my next shot in 2 weeks & I will check the statement from my insurance when it comes in to see if there has been any price increase. Also, yes, my doctor does the scan each visit before I get the injection (right eye) but every 3rd injection visit he also does the scan on my left eye as it has dry MD and he wants to make sure it does not switch to WMD.
Hope this info answers some of your concerns & questions.
I am also in the USA. Just wanted to add that my doctor also receives the Eylea in a small bottle and loads his own syringe.
Except Avastin works and there is no proof Hydroxichloroquine works for Covid-19
Well, when thousands of doctors around the world say it works & has saved lives, I think that is proof enough that it works. 95% to 98% success rate around the world using Hydrox0 chlor + z-pac and many doctos add zinc to the combo.
Avastin comes pre packaged in the syringe, not Eyelea. Avastin is a chemotherapy drug that is used to treat colorectal, lung, glioblastoma, kidney, cervical, and ovarian cancer. It is used off label for the eye. Eyelea is specifically made for WMD, macular edema and diabetic retinopathy.
One more thing.....does anyone in your family have WMD? I have been told this condition is genetic.....but also age related.
I am 77 years old, and have had perfect sight in my good eye until last month when my routine exam and OCT scan showed WMD.
No one in my family, back to parents & grandparents, aunts, & uncles, had wet or dry MD, but they all passed between 60 & 70 years of age.
And finally, I am curious, would you please share with me how long you have been getting Eylea injections, and about at what age did you begin to get them? Do not answer if you feel that is too personal, and not that it matters, but I am trying to compare my diagnosis with the experiences of others.
Seriously, if you are uncomfortable answering, I understand completely. You have been most generous with your information. I am so appreciative.
Truth is I have not kept track of how long I have been on Eylea shots - about a year at least I would guess. Before that, it was Avastin for a couple years. I am 77 years old. Until I got the silicone bubble in my eye I was satisfied with the Avastin. It seemed to be helping. The Eylea has proven to be a never ending stress-producing hassle between the speciality pharmacy that supplies it to the doctor, the billing department of the so-called "Medicare Advantage" plan I have, the "Good Days" charity that pays most of the patient's cost, and the main body of the insurance company, and its many departments - which don't seem to speak to one another. So every time I get a shot I can figure on hours spent on the phone later to straighten out the billing. A year ago or so, somebody in the UK put a link to a large UK study about syringes used in eye injections on this forum. I have the text of the "conclusion" of the study handy. I would have to search for the link. Anyway, here it is:
"Avastin injection formulations do not contain silicone oil. Rather, silicone oil is a syringe lubricant, which may eventually build up in the eyes of patients undergoing numerous injections. Certain staked-on syringe designs may increase the risk of silicone oil accumulation, while other luer syringes may lessen this risk. In a study by Scott et al. [3] staked-on syringe and luer designs were compared for silicone oil residues in the eye after Triamcinolone Acetonide injections. In patients receiving only luer cone syringe injections, no silicone oil droplets were found, while the patients receiving injections only with stakedon syringes were found to have silicone oil droplets in 44% of the cases examined. These results were attributed to a 50μL residual space in the needle hub which “squeegeed” silicone oil from the needle as the plunger was pushed down. Others have estimated oil expulsion on the plunger tips of disposable stakedon syringes at around 24% of the silicone lubricant [4] with between 0.15mg and 0.25mg of silicone oil ejected after three plunger pushes to expel air droplets [5]."
My understanding is that luer types have screw-on needles, while staked on syringes have needles held in place by friction. The Avastin shots I was receiving were from staked-on syringes, the Eylea from a luer type.
Very very informative, Jihm! Thank you for forwarding the conclusion. I am a retired teacher, have spent my career handing out homework assignments.....now I am the student, so anxious to learn all I can.
Because these injections and the syringes the doctors use are so unique I have been worried about what could go wrong. The conclusion is very valuable in pointing out the differences, and why Eylea, so much more expensive, seems to be the best choice. If I have to, I would personally use my savings to pay for it!
Regarding reimbursement, it is terrible for these insurance companies put a patient through all of that hassle. I guess you just must be persistent, and be unrelenting to so you get this cost covered.
Again, many thanks......I feel very lucky to have connected with you.
My pleasure. Be safe, Joan!
Sure. Started on Avastin at age 67. I am now 71. Avastin stopped working after about 15 to 18 months, so doctor switched to Eylea. Have been on Eylea for about 2 years. After the initial loading of a shot every 4 weeks for 3 shots, doctor spaced it out to 5 weeks. After a few at that interval, he went to 6 weeks, then 7 weeks. When he went to 8 weeks there was no improvement & no deterioration either , so he went to 9 weeks. At 9 weeks, there was major deterioration (bleed greatly returned) & vision deteriorated back to what it was way back before even the Avastin. So he went back to 6 weeks. After a few at 6 weeks, he again extended it to 7 weeks & then 8 weeks and when he went to 9 weeks the major deterioration again occurred. Went back to 6 weeks for next shot. Doctor said he would not try extending the interval that far ever again as there was a risk that it might not ever come back from the major deterioration that occurs at 9 weeks. So for the last 8 months I have been on a 7 week interval with a stretch to 8 weeks available if there is ever a conflict with appointment scheduling during week 7. Doctor is being very cautious as, when I did have a scheduling conflict at 7 weeks, he preferred to have me come in at 6 weeks instead of going into the 8th week.
Your experience is very valuable! I am very appreciative!
Above, Jihm’s reply to me may be an answer as to why the Avastin stopped working for you. I am just guessing, am just a novice learning about the syringes, but from the conclusion he sent, it leads me to think after years of Avastin injections, it could be possible you may have had an accumulation of silicone due to the structure of the syringe used. Eylea, using LUER syringes, lessens the risk of silicone residue.
From everything I have read, I know I will insist on Eylea, and pay for it myself, if I have to. I will remember your message and hope to persuade my doctor not to space the Eylea so far apart. You have helped me immensely. Bless you.
Yes, I read that reply, but for me, that is not why the Avastin stopped working. My doctor always uses his own syringes & always makes sure they are not silicone coated. He only uses silicone coated syringes for diabetics & I am not a diabetic. I ask him every time if the syringe has silicone in it & he always replies that he does not use them on patients that are not diabetic.
The Avastin just slowly stopped working for me. My doctor said that happens to some people. After about 15 months on Avastin every 4 weeks with a scan before every injection, the doctor noticed that a tiny bleed had returned. He still gave me the Avastin shot & on the next visit for an Avastin shot, the scan showed the bleed got bigger. At that point he said the Avastin was no longer helping me as my WMD had developed an immunity to Avastin, which he said happens in a small number of patients.
So basically, silicone had nothing to do with it. My retina simply would no longer accept the Avastin as a control for my WMD.
I am so sorry to read the Avastin ceased to work for you. I think that scenario is one we all fear. In your previous note, you say your doctor changed to Eylea, and Eylea is working now, right?
Yes, has been worlking fine for 2 years as long as I do not go longer than 7 to 8 weeks between shots.
What condition do you have? I have BRVO.
I am so happy that Eylea is working for you! Please know you have given me hope, and that is so important for someone who is just starting treatments.
Initially, on my first visit, my doctor told me he was going to inject Avastin.....
With the knowledge I had about that drug, I asked if I could please have Eylea instead. He asked me what insurance plan I had, and when I told him Medicare and Highmark MEDIGAP plan F, he did not hesitate to inject Eylea.
I am gleaning all of the information I can get....maybe one day I can help others, too.
Stay well....be safe.
And thanks.
UK people seen this?
pharmaphorum.com/news/uk-ap...
Found it after reading this thread.
• in reply toironbrain
Thanks ironbrain.
Hmm, not sure how uk eye clinics will take it if the patient says " no thanks, I'll have the licensed one".
Understand the financial pressures on the nhs but this does feel like a money driven thing. How many folk are going to want/have the nerve to disagree with a consultant???
And how is a patient going to satisfy themselves it's been compounded in accordance with the necessary safety protocols etc as mentioned in the ruling?
I'd be wanting a written statement from the eye clinic attesting to that and if they won't, well, that would say everything wouldnt it?
Mac Soc, could your experts perhaps provide a pro forma letter for patients to get their clinic to sign if they are asked to have this off label drug? To cover why doc thinks patient needs it as opposed to licensed drug, to cover any potential issues that might arise from it not being specifically formulated for use in the eye ( these ought to be in the nhs consent form but how would a patient know if they weren't?), to confirm it has been correctly compounded etc etc and that full traceability is available and all uk required safety measures have been and will be taken incl the issue of correct syringe used and no risk of silicone contamination into the eye.
Thanks for sharing that ironbrain. I'm not at all happy about this. I know some people here and in the US have Avastin injections and my opthalmologist told me when I first started having injections that they have had some really good results with Avastin (I have Eylea) but I would not be too pleased about it that's for sure. I understand the cost to the NHS is high but I really would rather continue with Eylea and I hope they don't try to force the Avastin on the patients as in 'it's this or nothing, after all it's our eyes that will suffer if anything goes wrong not theirs.
My understanding has been that when prescribing off-licence, a doctor must explain as clearly as possible about that fact and be prepared to carry the can if anything goes wrong.
The legal profession is hopefully not trying to sort of underwrite that responsibility.
I, personally, don't know how a legal action would be brought about if a patient suffered as a result of Avastin treatment. Would anyone be able to afford to bring the action?
Might they though let a nurse administer Avastin in the patient's home during the virus situation, rather than "letting loose" the more expensive drugs? I was wondering that when wondering whether I'd get my treatment.
• in reply toironbrain
Hi, yes docs should explain ( I'm sure there was someone on here who posted theirs had) but really, how easy is it for the patient to know they're being told what they need to know? And to grasp the implications? Plus how many years does it take before the GMC act to right any wrongs? And damage may not be correctable.
At least with licensed meds one has a certain sense of comfort.
Each to their own though - all these things are a hugely personal decision and I'm not dissuading anyone, just looking for ' official' support from mac soc. to aid that conversation with the doc, esp if you get an old school one who leans more to the basic 'trust me, I know what I'm doing' level of explanation 
My own personal view is a very sceptical one I'm afraid. Even with licensed treatment my initial consenting process for lucentis was a joke and it was only because I'd done my own research that I felt ok to sign.
Don't think they'd let home inj due to risk of contamination as not an official " clean room" though I see in US folk say they have them done in drs office?? But they could use empty dentist /gp rooms?? From what I can gather ( I could be wrong ) the issue is staff being redeployed to wards so they probably couldn't man any other locations either 
ironbrain• in reply to
When I went for treatment 11 days ago, the waiting room had 9 chairs all spaced out, when, usually, there would be easily three times that many. Like this, how are they managing to treat everyone? There seemed to be enough nurses for them to have enough time for an occasional chat together, and there was no real hold up getting one's turn in the operating theatre. I don't know how experienced a nurse would need to be to give the injection. Possibly the "experience" of the patient might be significant also here.
I don't know how "clean" one of the rooms they use besides the theatre where I go is, but it doesn't seem much different to a consulting room to me – no special air-conditioning as far as I can tell. Also, I'm not sure how the general air-conditioning in the eye hospital is isolated from other sections of the combined hospitals.
• in reply toironbrain
That's the problem ironbrain, they're not treating everyone.
Lots have had their 'regular' inj appointments cancelled, rescheduled for months down the line, and from what I know all the review appts too. Someone put on here that the uk Royal College had advised a 4month delay in some inj during the crisis and they'd even had to fight to get that as theyd been told it would be 6months! I need to go read it myself.
Giving the eye inj must be a specialist role requiring significant training I would've thought, not a thing any nurse or doc can just turn up and do.
I think the clean room concept is as much about what does or doesn't happen inside it as it is about aircon disinfectant etc. There's a member on the forum who works in a clinic and gives inj think , can't recall who, she might comment if she sees this
So glad you got your inj, hope it lasts untll this storm has passed x
I'm in the US. My retinal specialist has been using Avastin since I went on Medicare because of the cost of Eyelea. I have a $2000 deductibe with the supplemental.
When my carrier was OSCAR I had a $600/ yr deductible and $40 co pay each visit. Of course I was paying $900 a month for OSCAR insurance. We need single payer in the US.
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