Category: Research

Filling the Pumps

At approximately 15:45 hours yesterday, the body of a dark-colored field mouse was observed at the bottom of the pool. It appeared to be death by misadventure. However, when this technician attempted to remove the body from the scene, she was jumped upon by Etta Puppygirl, of this address. Ms. Puppygirl hit this technician squarely in the back, and she pitched forward into the water. While the evidence at the scene suggested accidental drowning, should other evidence come to light, Ms. Puppygirl should be further investigated.

Jeez. Do other CSIs go through this?

Ok. Enough of the nonsense. Sometimes I just cannot help myself. 🙂

And in the real, official news…Retina Today interviewed Carl Regillo about the ranibizumab port delivery system. It appears the RPDS is placed in the sclera. It is situated in the conjunctiva, the mucus membrane that covers the front of the eye. Where in the conjunctiva? It is placed in the pars plans (literally the “flat part” of the eye.) The pars plana is located near the junction between the sclera and the iris. That is the white part and the colored part. While the reservoir is initially implanted in the operating room, sutures are not required and it can be refilled on an outpatient basis.

Results of phase 2 clinical trial should be out very soon. The name of the study is LADDER.

While the RPDS system is the popular guy on the block now, reading this article, I found out it has competition! Replenish has invented a system called the Ophthalmic MicroPump System. This device sits on top of the sclera – not sure how that would work for me – but it is programmable. That part is cool.

Neurotech Pharmaceuticals has been working on Encapsulated Cell Therapy. This device will contain genetically engineered cells that will actually produce the substances needed to keep things working well. In other words, there would be no reason to refill the device. Put really basically, the other devices are filled with eggs. This device is filled with chickens that produce all the eggs needed.

As of the writing of this article, Neurotech Pharma was having a few problems producing the perfect “chicken.” That does not, however, mean they have given up.

And speaking of weird science and Carl Regillo, Healio reported Regillo will be heading up the only American feasibility study for the Alpha AMS Sub-retinal device.

This device is not for us. It is for retinitis pigmentosa patients who are blind. The Alpha replaces the missing and nonfunctional photoreceptors and apparently interfaces directly with the visual part of the central nervous system.

I found a 2013 article in MIT Technology Review that compares the Alpha to the Argus, the original artificial retina system we discussed. It appears the Alpha requires no external hardware while the Argus uses a camera mounted on glasses. The Argus surgery is three hours while the Alpha surgery can be up to 10 hours. Vision produced by either system is not great, but remember something can be better than nothing.

So that is that. No more drown mice today so I am hypothesizing we do not have a serial killer in the house. I would like a way to know which Puppygirl chewed on the furniture, though. Perhaps I need a consultation! Anyone know a forensic dentist?

Written August 5th, 2018

Next: Coming Out

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Gold in Them There Eyeballs

Good morning! End of July. How amazing! My elders always told me time flies as you get older. One more month of summer and that will be that.

Anyway, I have been ignoring my inbox. I need to get back to that. With four full days of clients and my “free” class homework and….sorry. In the news today or whenever this came…

As I suspected, the retina specialists discovered what was causing the inflammation after Eylea shots. It turns out that four lots of Eylea were responsible for 62% of the problems. The syringes included in the kits appear to have been somehow contaminated. Maybe. At this point, it is all speculative.

Lot numbers were made available to doctors at the end of February. All of these kits should be out of circulation at this time.

The take-home message for the consumer is this: report negative side effects. It may not be “just me”. You could be saving dozens of people from problems.

That was one tidbit from Healio. Another from Healio is they have fast-tracked APL-2.

As many of you know but some may not, fast-tracking is basically just making something a priority, rush job in FDA parlance. The FDA talks about facilitating the development and expediting the review of drugs that treat serious conditions and try to meet unmet needs. What fast track means in practical terms is the drug has a visitor’s pass that allows it to skip the line and get on the ride pretty much first.

Don’t you hate it when you are at the amusement park in line for what seems like hours in the hot sun and some clown waltzes up to the front…? Anyway, that is fast-tracking.

APL-2 is another pretender to the throne for the first, truly effective treatment for dry AMD. It is currently in the spotlight just like lampalizumab was until it failed in phase 3 trials. Hopefully, this complement factor inhibitor will have more success than lamp stuff.

And in case you are losing hope and don’t think any of the drug companies are truly interested in finding treatments for us, Healio gave cynical little me some reason to believe. Last year Novartis earned $2 billion during the second quarter. This year they earned $7.8 billion the second quarter. Novartis makes Lucentis. Sound familiar? How about ranibizumab? Same thing. The drug seems to be an up and comer in the treatment of wet AMD. A good portion of Novartis’ growth was due to ophthalmological treatments such as Lucentis.

Then there is Johnson and Johnson. That company is no longer just the band-aid people. Johnson and Johnson saw over a 10% growth in profits from second quarter 2017 to second quarter 2018. Johnson and Johnson makes contact lenses and eye surgery devices.

In short, there is gold in them there eyeballs! Considering there are roughly ten dry AMD patients for every wet one, how could any red-blooded capitalist resist? Dreams of riches beyond imagination!

And here you thought they did not care!

Written July 29th, 2018

Next: Do I Rage or Go Gently?

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Denizens of the Dry Side

Hi. I will have you know I just finished shampooing the living room carpet.? Done is done, and I am done in. Just a little too much pushing and hauling for my taste. Even with coasters under all the legs, that furniture is heavy!??

The moral to this story? There is always tomorrow…and if tomorrow doesn’t come, a half-shampooed carpet is the least of our worries! Do as I say, not as I do, and take care of yourself.

And since I am just about totally worn out, I guess that means it is time for a page. Don’t you love I think about you when my eyes are crossing, and I can’t get out of my chair?

Medscape published an article by Laird Harrison (cool name, Mom Harrison. Good job!) It seems there have been some reactions to anti-VEGF shots. A LOT of reactions. There have been “clusters” of inflammatory responses and they have many retina specialists concerned. One retina specialist was really unnerved when he had six patients with bad responses in one day!

The problem has been significant enough they will be talking about it at the American Society of Retina Specialist upcoming meeting. Maybe they will be able to do a bit of detective work and figure out what is happening. Bad batch? Allergic reactions? I don’t know, Watson, but I would suspect the game will be afoot!

If you had a bad reaction to a shot, I would suggest you make sure your specialist passes on the information. If it were a bad batch or something similar, there may need to be a recall. Get that stuff off the shelves.

Also at the ASRS conference, they will be talking about the port delivery system for ranibizumab and the phase 3 SCORE findings. SCORE is the study that compares bevacizumab to aflibercept. So far they are finding bevacizumab to have comparable effects.

HAWK and HARRIER are not only fighter jets. They are also studies trying to find a way to predict which anti-VEGF may work for a given patient….hmm. British fighter jets. British studies? No se.

And coming to the dry side, it appears APL2 is being investigated as a prophylactic measure for dry AMD. Remember the information from the poster session suggested APL-2 slowed the progression of atrophy but did nothing for acuity. Not sure why that would happen but most people want to see acuity losses slow and people became skeptical. Not sure what this move to prevention is all about but it may bear watching.

As usual, wet AMD continues to be the favored child with the researchers. Scanning the Retina Specialist article about what is in the pipeline and expected to emerge in 2018, the great majority of potential new products are for the wet form. There were three for dry and one of these was “lamp stuff” which most of us know failed in phase 3 trials.

Frustrating as it may be, hang in there oh denizens of the dry side. Miracles have been known to happen. I shampooed my carpet!?

Next: Mailbox or child?

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Orphan Drugs

Waiting for the puppygirls to dry before we go in the house. Explain why some dogs will go for a swim and then roll in the dirt. That is one of Etta’s favorite tricks. When the “mudbug” finally dries and I brush her, the dirt flies like it is coming off of Pigpen!

So, on the list today was at least thinking about shampooing the carpet. At this point, I have found the detergent for the shampoo machine. …oh, c’mon! That IS thinking about it! ?

I was going to do it. I really was, but Maggie the Mouth (aka MaggieVox with apologies to the electronics company) decided to have a barking fit at 3 am. Consequently, hubby is napping…good excuse; right?

Good reason for a page!

Number 2 on the Healio list of five top stories for June was about diabetic macular edema so I am skipping number 2 to go to story 3. They have implanted the EyeMax Mono lenses in the first cataract/AMD patient in Argentina.

We talked about the EyeMax Mono in spring 2017. The EyeMax Mono will move the image away from damaged parts of the retina and move it to a healthy location on the peripheral retina. The concept is the same as prism glasses; I think.

Remember neither of the new lenses they are implanting in cataract/AMD patients does a thing to stop the progression of the disease. What they both do is make the effects of the disease be less for a while. Not bad, but not the best I can imagine.

EyeMax Mono has been granted a CE mark in 34 countries. It has been embedded in patients in 25 countries.

The last article with any relevance to us….or at least what I see as relevant to us…is one about a drug for Stargardt’s being granted orphan drug status in Europe. For those just joining us, Stargardt’s is macular degeneration for young people. It proceeds at least generally like dry AMD progresses.

The drug, LBS-008, prevents the build-up of toxins in the eyes. It was granted orphan drug status by the FDA in 2017.

Just to be thorough, let me review the US definition of an orphan drug. According to the FDA’s site Developing Products for Rare Diseases and Conditions, the government provides funding for approved products intended to treat diseases and conditions affecting less than 200,000 people in the USA. Because of the rarity of the conditions they are trying to treat, companies developing these products could not be expected to recover development costs, let alone make a profit. Many of these product lines are abandoned due to cost.

The FDA reported that since the inception of the program in 1983, They have brought over 600 treatments for rare diseases to market. Between 1973 and 1983 the public section brought ten products to market.

And since I am ridiculously curious, I also looked up LBS-008. According to the article Lipofuscin in Dry AMD, LBS-008 tries to reduce Lipofuscin. In my usage, that is eye poop. LBS-008 is supposed to reduce the retinol in circulation, reduce the production of eye poop and lead to a better visual outcome. Once again it sounds like those low bulk dog foods they sold so people would have to pooper-scooper less. However, if it works out, it could be a good thing.

As of 2017, LBS-008 was in phase 1 trials. Remember that is safety and tolerability so they have a long way to go.

I got a long way to go, too. I have not gotten a thing done today. Time to get busy!

Written July 14, 2018

Next: Denizens of the Dry Side

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Dual Diagnosis

I promised myself since I am only working part-time I would awaken my internal, sleeping Domestic Goddess. I would do great things! So far all She has done is roll over in her sleep.

Today I finished the cobweb seek and destroy mission. I took my fluffy thing on a stick – and please notice I use all of the professional terminologies! – and wiped down all of the walls and ceilings. The puppygirls followed closely along – sneezing.

I am working up – or in this case down – to shampooing the living room rug. That is going to take a lot of turning the mind and convincing myself to do it.

Well, stranger things HAVE happened; you know. ?

And while I think about shampooing the carpet, it is time for a page! Hopefully, there is something in the email to save me from myself.

Healio listed the five top articles about retinal disease in June. The first one was about intraocular lenses (IOLs) for those of us who have both AMD and cataracts. In Austria, they are implanting lenses that magnify in those who have had cataract surgery. The bottom of the lens sounds like it is more like a bifocal (my interpretation) while the top takes care of far vision for distance. The lenses provide 1.5 magnification at 25 to 30 centimeters ( read 10 to 12 inches) and 3x magnification at 12 cm to 15 cm. I assume that is 5 to 6 inches.

The researcher, Andreas Borkenstein, said that even though the scotomas (blind spots) are still there, the magnification makes it so they obscure less of the image.

They are finding great improvements in best-corrected distance acuity. People with acuity scores of 20/400 corrected to 20/63. Yippee!!!

Borkenstein stated he wants his colleagues to be able to give dual diagnosis patients (AMD and cataracts) hope. Just because a patient has advanced AMD doctors should not tell them cataract surgery is pointless and will do nothing! …Damn right! You tell them, Andreas! ?

In addition to the acuity improvements, contrast sensitivity and color perception also improved. Another yippee!

Now, having used MaxTV lenses, I can tell you, my depth perception can be way off when I use magnification. My low vision specialist warned me about moving and wearing them. Doesn’t work well. I tried to. (So maybe I am from Missouri?)

Anyway, my point is this: nothing was said about depth perception, driving, etc. in the article. I am thinking the neuroplasticity of the brain is such that it just eventually adapts, and you learn how to do all of those things normally. No going to put a cup on a table and missing the table by a foot! Or going to drop cans in a cart and have them rolling all over the floor like I did. Oops. Anyway, not sure if you can drive – or even walk fast – with these IOLs. Need to do more research on that. Also need to see if they have been approved in the USA, Canada, UK, etc.

But that will have to be another page. Bye!?

Written July 10th, 2018

Next: Orphan Drugs

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Stem Cell Study Part 2

Back again the same day. The pups were in the pool and then decided to roll in the dirt…again. I showered them two nights in a row. Bathroom looked like a typhoon hit both times. Not doing that again.

That means sit with them outside until they dry, and I can brush the dirt off. And that means another page on the study.

Continued from Stem Cell Study Part 1.

They will be running nine people in the phase 1 study. You might recall numbers are very small in phase 1. There will be 141 people in the phase 2 study. Phase 2 studies have more people but they do not involve a multitude.

Because the research protocol requires the use of immunosuppressants, extensive cancer screening is required before the study. Cancer risk, and it seems skin cancer risk especially, is higher if you have a compromised immune system.

Something I don’t remember seeing before is the requirement that the subject have a negative tuberculosis test. That may have very well ruled me out at the very beginning. 40 years ago I had a positive tine test, and I have been told there is a scar on my lung.

There are all sorts of tests and screening that have to occur before the actual procedure. The researchers want to be sure there will be very few problems coming up during the actual research.

A point the materials make that cannot be stressed enough is legitimate research will only be working on ONE of your eyes. If the “research” or “treatment” you are involved with wants to do both eyes at the same time, refuse and minimally seek a second opinion. Better, run out of there and don’t go back. Remember that is what happened to the women in Florida and they are now blind.

We talked about this when I first was looking at this study. The actual surgery for this procedure is a vitrectomy. A vitrectomy requires the surgeon to make incisions in your eye and then draw out the vitreous “gel” from your eye. They replace it with air or saline or sometimes oil. The vitreous gel will refill but it takes time.

With vitrectomies there is also an excellent chance of developing cataracts. 80% chance in fact. The informed consent form talks about this and all sorts of other side effects. A legitimate study will do that.

Remember with legitimate research they pay you. You do not pay them. The rate for this study is $75 a visit. Over the five-year time period of the study, subjects are expected to earn $1800. Not a king’s ransom but better than paying thousands for a bogus treatment.

These are just some of the things I wanted to highlight from this 46-page document that I received. These are things you see in a legitimate research study being put on by an internationally known researcher at the number 2 eye institute in the country and sponsored by a huge pharmaceutical company. This is the way things should be done. Don’t settle for less.

Written July 7th, 2018

Next: Zen Habits

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Stem Cell Study Part 1

Happy Saturday! Even though I am pretty convinced I will not be invited to be a part of this study – my vision is not bad enough – I did get the patient informed consent packet and I can browse through that with you. I want to look at it and see what’s happening.

The formal title is very long. What it says is it is a two-part study. One part is a phase one, safety and tolerability study, and the second part is a phase two, proof of concept study. Both studies are being run in several different locations (multicentered), and they are unmasked. Unmasked means that everyone knows what he or she is being given. For example, if they were testing to see if aspirin is better than Tylenol, all the participants would know which drug they had been given.

The independent variable in each is the size of the dose of stem cells. The independent variable is what the researchers are manipulating. The protocol is dose escalation meaning there are different groups of subjects, and they will be receiving increasingly larger numbers of stem cells, one group to the next.

And I am still working through the title, guys!

Two more terms and the title is done: parallel groups and randomized groups. In parallel design, research subjects are assigned to different treatment groups – in this case, size of dose – so that the effects of the different treatments can be compared. Randomized assignment is done pretty much by chance and is hoped to yield groups that have no real differences between them. It is hoped that any differences found after the research is run will be because of differences in treatment and not due to some other factors.

Ok. THAT was the title! Moving on.

The study uses human embryonic-stem-cell-derived retinal pigment epithelial cells (RPEs). Remember these cells come from blastocysts. Blastocysts are balls of between 200 and 300 cells and are about 0.1 to 0.2 mm in diameter according to Wikipedia. A sheet of paper is 0.1 mm thick to give you a point of reference. Blastocysts, at 5 to 6 days after fertilization, have not yet implanted in the uterus.

That last paragraph is information someone might need to make an informed decision on whether or not they want a treatment with human embryonic stem cells. If you think life begins at conception, this might not be a treatment for you.

If you decided to participate in a stem cell study, at least one using embryonic stem cells, you will need immunosuppressants. Getting these cells is actually a transplant. It is related to getting a new kidney (related but NOT the same). Even though the eye has immune privilege, the study will do 13 weeks of immunosuppressants. I imagine it is the immune privilege of the eye that limits this to 13 weeks rather than a lifetime of immunosuppressants as happens with major organ transplants.

Immune privilege? Oh yeah. According to the Wiki people, immune privilege basically means the organ can tolerate the introduction of antigens without eliciting the inflammation response, part of the body’s defenses; remember? The big immune-privileged organ is the brain. Since the eyes are actually just extensions of your brain, they have great immune privilege also.

I am officially way over my 500 words for this so I am quitting now. Back to it later!

Written July 7th, 2018

Next: Stem Cell Study Part 2

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In the Pipeline for Wet AMD

Help! Stop me before I write again! Lin is going to shoot me. I have housework to do and a psychological evaluation report to write and what I feel like doing is pretty much exactly nuthin’, muffin. Too hot. [Lin/Linda: I don’t think that would stop the speeding train that is YOU! ::grin::]

20 minutes later
Ooopsie. Back from running after the Maggie Monster. She got out and decided to go play with the big dog down the way. That is BIG dog. Do you know what three days of a heat wave does to asphalt and bare feet???? Ouch!

But enough of the autobiographical details. I found an article entitled Wet AMD in 2018: Drugs in Development. I really swear the researchers love you guys better because they do all sorts of wonderful things for you. ?

For example, an anti-VEGF called Brolucizumab is in phase 3 clinicals. This drug is exciting because it can be dosed in larger amounts resulting in extended times between treatments.

OPT- 302 is a compound that will block the activities of the proteins VEGF-C and VEGF-D. Remember VEGF stands for Vascular Epithelial Growth Factor. The VEGFs cause the growth of substandard veins. Blocking these in wet AMD is a good thing.

According to this article, ranibizumab blocks VEGF- A. Not too sure how many letters there actually are, but combining OPT-302 with ranibizumab will take care of more of the alphabet.

OPT- 302 is in phase 1/2 clinicals. It will take a while.

Ok. Get out your water wings ladies and gents because it is getting a little deep?.

Platelet growth factor binds to a tyrosine kinase receptor. The receptor is essential for the survival, recruitment, and maturation of pericytes.

No, not parasites. It just sounds almost the same. According to Wikipedia, pericytes are associated with allowing cells to differentiate, multiply and form vascular branches among other things. The bottom line is: disable the platelet growth factor and you can stop or significantly slow the growth of new blood vessels. One more way to get to the goal. Not anti-VEGF. This one is anti-PDGF. Auntie Pidge? [No, I have no clue where she comes up with some of this!! ::grin::]

Names to look for: pegpleranib and rinucumab. So far pegpleranib has done little to nothing in clinical trials but they are combining it with anti-VEGFs to see if there will be a combined effect. Rinucumab did not do much either. Same with DE-120 (Santen). However, you never know. The concept appears sound and they will probably keep working on them.

They continue to look at tyrosine kinase inhibitors in other studies. Vorolanib is in this category. The APEX study is in phase 2. Maybe one day you can have Auntie Pidge to thank for saving your vision!

The article goes on and talks about drugs that attack angiopoietin 2. This is a blood vessel growth factor. They are also targeting substances that require a lot more knowledge of biochemistry than I ever wanted to have or thought I would need to understand what they do. Suffice it to say they are all compounds that have a role in making those nasty, extra blood vessels grow.

So that is what is in the pipeline for you wet folks. Seems like a lot. Are you SURE they don’t love you better?

[Just so that we don’t forget, there is research going on for dry AMD as well.  Here’s Summary of Research and Development — 2018 by Dan Roberts with research in both dry and wet AMD.]

Written July 3rd, 2018

Next: It Might Be That Pony

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Keeping Our Eyes Open

Greetings from Pennsylvania where it is 90°F in the shade. I was just puppy lifeguarding for about an hour. Now they are sleeping. All that swimming and fighting with your sister is tough on a puppygirl!

Speaking of the weather, I need to remind you, if you are having a heat wave like we are, please make sure you are drinking enough. Be sure you are able to get to someplace cool. This is especially true if the power goes out and your air conditioning goes off. People die of the heat every year.

I should be doing other things; I know. I’m not. Having four days a week off takes away a lot of the urgency. Besides, I would have to go inside to use the CCTV or to clean and I don’t want to go in. I am one of those weird people who loves this weather.

So you are stuck with me and a hodgepodge of news. First of all, I discovered they published the ‘official’ lampalizumab results in JAMA Ophthalmology this month. It is still June, so, yes, this month. Of course, the bottom line has not changed: it did not work. They are perplexed as to why they found an interaction between a certain genotype and the treatment when they ran the phase 2 data. It was not there when they ran larger numbers in phase 3.

Of course, the researchers are still crunching data. They are also planning on running whole genome sequences on the subjects to see if their genetic make-ups shed any light on what went wrong. Maybe suggest some new use for “lamp stuff”. Not to be too cynical about this, but this treatment cost plenty to develop and was supposed to be an amazing cash cow for Roche. Might as well see if there is a use for it somewhere.

I found a plan for a research review published by staff in the genetic medicine department at Newcastle University. They are planning to gather all the research they can find on photobiomodulation and dry AMD and see what they discover. This might be the first salvo in a battle to get the Lumithera machine approved in the UK.

Apparently, they are not sure exactly how the thing works. The section on the science behind it is headed “How the intervention might work.” (I always like magic myself!?) What they think is there is some sort of interaction with the mitochondrial that leads to a reduction of oxidative stress. Maybe. Like I said, magic.

I am not finding an end date for their research review and meta-analysis. I cannot, however, believe it will be too long. Maybe a year or so. Maybe more.

Coming across “the pond” I found an article about Lumithera presenting at ARVO in Seattle. The research LIGHTSITE 1 is promising.

I then went to clinical trials.gov and found a 2017 study that was identified as phase “not applicable”. Ok. Considering we are all lifetime learners… I found a flowchart on how to identify a device that would be applicable for a clinical trial but I did not get very far. Either the government’s verbiage is obtuse or I am. Suffice it to say, it has something to do with not requiring phases. Why? You are actually asking ME?!?!

Anyway, the 2017 research ran an ‘n’ [number of participants] of something like 30. Pretty small. Not sure if that will be good enough for the FDA even with all the European data. You people with early stage AMD, keep your eyes open. This one just may be for you!

Written 6/30/2018

Next: When the Going Gets Tough…

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Lights Please!

Lin will be thrilled. After the holiday I am going to work four days a week! No more multiple pages per day![Lin/Linda: You’re going to give these nice people the idea that I don’t LIKE to do your pages! ::grin::]

I have to say I have been easing off on my resolution to spend my ‘retirement’ doing domestic chores. The basement sort of broke my will. Tomorrow we take a load to the dump. Maybe after I get rid of all that, I will be motivated to start again.

In the meantime, there are all sorts of things happening in the world of AMD! Hurrah! Saved again from domestic drudgery!?

Healio ran a little piece saying the EU has granted the Lumithera LT-300 a “CE mark for treating dry AMD.”

Ok. I am clueless.

According to Wellkang Tech Consulting the CE mark – generally made with rounded letters – stands for the French for European Certified. (And no, I am not attempting the French. I was allowed to skip my last reading in my senior year. My accent was so bad, he did not want to listen to me!) It appears this means it satisfies “essential requirements” for a product to be sold in the EU.

Now, supposedly this thing is to offer “a safe and effective early-stage intervention for patients with early-stage AMD.” That makes it sound like it is shelf ready. Coming to a Walmart near you sort of thing. What the hey is it then????

The Healio article says it uses “photobiomodulation which involves noninvasive light-emitting diodes for the treatment of ocular disease.” Wonderful. I love sentences that tell me nothing or at least very little. Good thing I am a helleva researcher even if I say so myself.?

I followed a link to a 2016 Healio article talking about the LT-300 in clinical trials. Get to that in a sec’. Photobiomodulation is first.

Photobiomodulation, according to the American Society for Laser Medicine and Surgery, is a term used to describe the mechanistic/scientific basis for this photonic specialty and photobiomodulation therapy is the term for its therapeutic application. Yeah. The mud thickens.

Moving on, it looks like the category includes lasers, LED lights, and any form of non-ionising light. It appears light energy is being used to alter cells at the molecular level.

What I am looking at here is crossing my eyes, but my ignorant, social scientist guess on this is they are using light to alter cell functioning and, among possibly other things, reduce inflammation. The articles I was scanning mentioned red light several times. My mind immediately went to how blue light is bad for us, and how red light is at the other end of the spectrum. ROY G BIV, remember? [ROY G BIV = Red Orange Yellow Green Blue Indigo Violet]

Here is the disclaimer: I do not know what I am talking about here. That last paragraph was all ignorant supposition based on few facts. I don’t know. If you know something about this, speak up! I could use the help. I said I am a good researcher, not that I understand what I find.?

The 2016 Healio article, photobiomodulation improves visual acuity…suggested the red, yellow and infrared lights used in the study improved visual acuity and contrast sensitivity and – drum roll, please – shrank drusen. They appear to be planning its use with early stage AMD. The idea is to slow the roll to advanced forms of the disease.

There you go. Readers in the EU, go and find out about this thing. This might just be the first treatment for dry AMD. Wow.

Written June 26th, 2018

Next: Pushing the Envelope

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Vision 20/20

Good morning! This domestic goddess business has got to end. I have been cook and pool girl as well as laundress and puppy lifeguard not to mention dishwasher and sweeper person already this morning. Give me a simple day at the office!

First of all, Lin sent me the stats for the website. We owe all of you a HUGE debt of gratitude. Thank you! Our stats are wonderful and that is only because you are so fantastic. Thank you for your loyal support!

Honestly put, we are looking forward to the day you would never EVER want to read these pages. We are looking forward to the day we can close up shop and never write another page. The reason is this: that will be the day there is a CURE for AMD. Not here yet, but strides are being made.

Bringing me to a couple of related things I want to touch upon. Remember Vision 20/20: The Right To Sight? We are just about 18 months from their target date. Their goal is to eradicate preventable blindness in the world.

Back in 2004 JAMA Ophthalmology ran a lengthy article about the state of vision in the world. At the time there were 45 million blind in the world and 80% had been blinded by diseases or conditions that were either curable or preventable. Even worse, unless something was done and done quickly, they were projecting 76 million blind by 2020. Yikes!

Anything happening? Oh, yeah…according to Healio, the FDA has recently approved a treatment for river blindness. Although I don’t think I had ever heard of it before, I would suspect it strikes terror in the hearts of mothers in sub-Saharan Africa, Yemen, and South and Central America. Let your kids play in the river and they may come home with a parasite that will make them blind. The World Health Organization has identified river blindness as the second leading infectious cause of blindness in the world. Pretty good to finally have something that will treat that.

Then there are the cataract initiatives all over the world. Recently the director of Khmer Sight Foundation spoke on the strides they have made fighting cataracts in Cambodia. Good efforts there.

You want impressive? Try the Himalayan Cataract Project. A piece on CBS News last year sang their praises. Rightfully so. The Himalayan Cataract Project had at that time restored sight to more than four million people in 24 countries. That wasn’t just the work of founders Ruit and Tabin, of course. Together they had ‘only’ restored sight to 150,000. They trained a few folks along the line.

I will be anxious to see what the World Health Organization presents in 2020. I have a feeling it is going to be big.

Keep the faith. Progress is being made on all fronts. It is amazing. Want proof? Watch the 60 Minutes video when the Nepali woman sees for the first time in decades. Amazing.

Written June 17th, 2018

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Glad They’re On Our Side

Thank God it’s Friday, Friday, Friday! I would ‘sing’ the lyrics to you but I just looked them up and they are really rather uninspired. Good memories with the music, though. In 1978, I was a disco queen! Anyone else who had a totally enjoyable, misspent youth in the clubs? Those were the salad days.

Anyway, I am really packing tight three days a week at the counseling office. Still not enough clients for four. That means I will drive Lin crazy with many, many pages. Pray I get more work so she gets a break! [Lin/Linda: Please pray she gets more work! Pleasssseeee!]

Derek Daniel has Leber Hereditary Optic Neuropathy (LHON) and, true to form, when I learned about something, suddenly it is like Underdog. It’s everywhere. It’s everywhere!

Healio reported GenSight just announced more information on their REVERSE phase 3 clinical trial results. It turns out this clinical trial assessing the efficacy of a treatment for LHON did not meet primary endpoint goals but did meet several secondary endpoint goals.

What does that mean? eSearch tells us primary endpoints are results that will answer our most important questions for the research. Secondary endpoints are about other questions. They are not necessarily what we were trying to find out but the answers are generally kinda cool and good to know.

For example, contrast sensitivity almost doubled after treatment… Hey! We have problems with that! Maybe this treatment for LHON will have some crossover potential. Their secondary outcome measure may prove to be a boon for us.

LHON is a mitochondrial disorder with a maternal inheritance. In other words, it is a disorder of the powerhouse of the cells. (Mitochondria turn energy from food into a form that cells can use). Since the mitochondrial DNA comes to us through the maternal line only, it stands to reason the inheritance for LHON is through the maternal line.

Doesn’t sound like us; right? Stay with me. I do have something in mind.

The Healio page sent me to a 2012 journal article on Leber hereditary optic neuropathy and oxidative stress. After several paragraphs about how they produced mutant, transgender, blind mice (don’t ask me) to study the disorder, they got to what is, for me, the crux of the matter. Specifically, they are thinking miscoding in the mitochondria leads to this-then-that and then to super oxidation and then all hell breaks loose. In other words, they are thinking oxidative stress is a huge causative factor in yet one more eye condition! There is a pattern forming here.

They are reported to be experimenting with ways of reducing oxidative stress in those with LHON. There is evidence that should slow the progress of their condition.

Of course, as of 2012, they were still talking leafy greens and AREDS2, but that does not mean there will not be other ways of doing this the researchers will discover something. They have to be pretty clever; right? After all, a bunch of folks who say “Hey, let’s make a mutant, transgender, blind mouse!” and then actually do it have to be pretty smart.

Just glad they are on our side.

Written June 17th, 2018

Next: Priorities

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Pushing the Envelope

Happy Monday! Trying to “earn my keep” on my first “non-school” day. The recycling has been taken to the center and the extra fridge has been cleaned.

The ‘extra’ fridge is actually our old one. After we bought the new one, we found out it was only a $50 repair. Voila! Two refrigerators.

I also took delivery of my loaner CCTV. Transporting this thing should be interesting but there is something about not looking a gift horse in the mouth. People do not have to be as kind to me as they are. Gratitude is in order. Thank you!

Found an interesting thing when I was looking at the Brightfocus spring newsletter. They have this eyechat thing. They have eyechats the last Wednesday of the month. It is 1:00 pm. Eastern standard time, I think. I forgot to ask. [Lin/Linda: their eyechat feature is a free telephone conference that is done live where you can listen and ask questions of the guest.  And yes, it is 1:00 pm Eastern Time.]

Anyway, the number to sign up for the live chat is 800-437-2423. If that does not work for you, you can call 800-250-7274 and listen to past chats. Want that on your iPad? Try brightfocus.org/pastchats.

Umm, maybe not that easy. That address took me to their chat page. I had to scroll down to the bottom of the page and click on “listen to previous chats”. THAT gave me the chat menu. You might want to try that. [It’s a little easier on my laptop. Also, you can sign up for their newsletter on many, if not all, of their webpages.]

They have audio and PDF file with the transcript. Audio is taking forever to download. Might be my system. Might not. [Again, faster and easier with my laptop.]

Also in that edition was a follow-up on gut microbes. It has been said our guts are our second brains. It has also been said the state of your gut determines the state of your health. According to Exploring gut microbes in human health and disease: pushing the envelope, there is a good chance such disorders as irritable bowel disease, cancer, diabetes, autism, asthma, and obesity (I am not fat. My gut microbes just don’t like me!??) may be due to imbalances in the gut.

Apparently, we might have to add AMD to that list. Remember we talked about this last fall? Rowan at Tufts is looking at how gut microbes interact with our high sugar and starch diets. He has now added an extra wrinkle. He is killing off gut microbes in mice and switching samples between mice fed high and low sugar diets. Trying to figure out if the culprit is the sugary diet or the microbes.

And speaking of pushing the envelope, how they get new gut microbes into people is definitely pushing things to the limit! Before I said I wanted them to change my microbes so I would not have to change my diet. Rethinking that.

I changed my mind after watching a Nova program, Wonders: what is living in you? This woman had a serious digestive problem after a course of antibiotics. The only way they could solve it was giving her poop pills! There are these people with great gut microbes who come in almost daily. They get paid for making a ‘deposit’ which is turned into poop pills! Yuck.

Could be worse. Supposedly in fourth-century China they made “yellow soup” out of poop. I don’t want to think about it but, you know, those leafy, green vegetables are looking better and better.

Later! ?

Written June 11th, 2019

Next: Lookout

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Why Drop Out?

I wanted to start this page by saying I am enjoying the halcyon days of summer but then realized I do not know what ‘halcyon’ means!

Hold on…OK, synonyms are “calm, peaceful and tranquil”. We’re good…except for Etta jumping on my head in the pool. I am thinking I won’t actually be able to swim when they are in the pool area. Etta swamped me!

Oh, well. If that is the worst that happens today, I am ahead of the game.

Moving right along. Halcyon days of summer, etc, etc. I have been outside walking and hanging out at the pool with the puppygirls most of the afternoon. Blessedly sunny today but I am reasonably sure I have gotten burnt.

Remember to wear your shades. Yes, your eyes can actually get sunburnt. More importantly, UV rays contribute to oxidative stress and that leads to all sorts of things ending in more vision loss.

Since I have some days with nothing to do, I have gotten a load to the animal rescue yard sale and bagged up all the recyclables to transport to the recycling center. Among other things, of course. I have high hopes of using this time wisely to do a lot around the house.

Please note I am sitting by the pool and writing this page. Sigh. The best-laid plans of mice and men. Did I mention I really dislike anything to do with housekeeping?

Found an interesting website. It’s news-medical.net. A while back Lin did a page on eye drops for wet AMD. News-Mediçal reported PanOptica announced at the end of May they had dosed their first patient in a 1 / 2 clinical trial with PAN 90806. PAN 90806 is a once-daily eye drop containing a very small molecule anti-VEGF. PanOptic is hoping to avoid the cornea problems that occurred in earlier trials.

They also, of course, are looking to reduce the “injection burden.” The article says they hope a reduced burden will lead to folks staying in treatment longer.

Whoa there! Discontinue rate for anti-VEGF shots? Let’s look.

A 2017 journal article by Polat, Inan, Ozcan, et al (and yes, this was Turkey) reported a dropout rate of nearly 18% and a non-compliance rate of nearly 40%! Oh, good grief!

Not sure what the dropout rates are for the US, UK or EU. The only article I found based in the US was with the very old. Does anyone know what it is for us under 90?

The article from Turkey talked about the “usual suspects” as being related to compliance rates. You know: age, education, distance to the hospital, finances, etc.

Any way you look at it, it is scary. I never gave a thought to treatment compliance. If I had, I would have assumed dropout rates were low. Maybe not.

Any thoughts on this? What makes you folks getting shots want to quit? What do you think could be done to help people stay in treatment? Let’s start a discussion.

Written June 9th, 2018

Next: Forewarned is Forearmed

HOme

Combination Therapies

Back home from my penultimate day at my school job. They had a luncheon for me. Strange. Very strange. My preference would be to lock the door and walk out quietly. For some reason, they seem to think that is unacceptable.

Now I am sitting on the back deck eating slightly stale chips with the puppygirls. This is part of the reason I cannot be unemployed. The family sized bags I occasionally buy at the warehouse store would not have a chance to get stale! We would have to go on mommy/doggie diets!

I got everything I needed to finish at school done today. Also did a little outside (non-school) work. Don’t tell?. Tomorrow is just a formality. I will take stuff for the counseling center and also stuff to prepare for the adult education, mini, mini-course I will hopefully be teaching in the fall.

I decided it was time to put up or shut up. I am doing a very brief, three-session course on Age-Related Macular Degeneration. If I get any takers, that is. It all depends upon whether or not I have students.

So any thoughts on what I should cover? Lin thinks I should include the new stuff they are doing with the “brachytherapy” device. Maybe I would if I knew what it was!

Fortunately, Lin included an EyeNet post all about it.

First of all, the online dictionary tells me that brachytherapy is a way to fight cancer. Sealed radiation sources are placed in the tissue near the area that requires treatment.

Since we don’t have cancer, I guess I need to read the EyeNet article and see how this treatment relates to us.

Once again this is a treatment for wet AMD. (Not funny guys. I really think Daddy likes you better!). It is another crack at improving the effectiveness of anti-VEGF drugs through a combo therapy approach. They are interested in reducing the burden of regular eye shots.

Unfortunately, results have been mixed. CABERNET fell short of its goals. (I prefer a good Moscato myself. However, if they are naming their studies after wines, I think I want to be invited to their Christmas party ?).

The INTREPID study used an x-ray based treatment and got good results. Combined with their x-ray based treatment, eye shots were needed nearly a third less often. They also reported visual acuity at least as good if not better than eye shot treatment alone.

There is more to the article. I will read through it and see what they have to say about irradiation and wet AMD. Maybe add it to the next page. Suffice it here to say anti-VEGF treatments are evolving to the next level. Combination treatments will soon make it so you rarely need to go for eye shots. All in all, not a bad thing.

Catch up with you later!?

Written June 4th, 2018

Next: Now what?

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The Waiting Game Continues

We’re off to see the Wizard! Not sure what this trip will accomplish except to tell me I am a bit blinder and to put me on the study referral list one more time. [Lin/Linda: Read about who the Wizard is in Sue’s page The Man Behind The Curtain: The Wizard of Wills.]

I heard from ‘my’ researcher at the beginning of the week. She said things were moving along and they were getting closer to launching the Astellas study. Not sure what that means. Does that mean six weeks? Six months? Six years? Also, while I interpret her responses as hopeful, she has yet to say I am in for sure. I chose to interpret everything she says as positive. [To read more about the Astrellas study, read Sue’s page The Waiting Game.]

“All that we are is a result of what we thought.” – The Buddha

Same day, afternoon

Well, we are back. Pretty much what I expected. A couple of new wrinkles. My disease is progressing at an average rate. The stem cell study should be ready to go sometime this fall. That will be about six months after the initial target date of March.

It appears people still have confidence in APL2. The slowing in the rate of lesion growth was promising, of course. The failure to slow vision loss along with that may be being seen by some as an experimental fluke. Apparently, they are expecting that will change when larger numbers are run.  [To read more about the APL2 study, read Sue’s page The Waiting Game.]

Oh, and Regillo is pulling back to full-time in his Philadelphia offices, or at least leaving the satellite office I have been using. I am being given to an assistant wizard. Crap.

I am discouraged but not defeated. We are getting closer to the discovery of some sort of treatment for dry AMD. It is going to happen and I might as well help…not to mention being one of the first ones to get some substantive help with this thing. Really, you did not actually think I was being selfless; did you??

In the meantime, trying not to fall victim to a crappy mood, I have done a little self-help. I engaged in some behavioral activation and some good old DBT opposite to emotion. In other words I got moving and did something that would make me smile. A little positive activity is often helpful to quell a developing sour mood. That is especially true when there is nothing you can do about the situation.

Dancing on the deck of the Titanic? Yep, but remember, 706 people survived that disaster. That is nearly a third. Oh, and two dogs. (The stuff you can find on the internet!)

I have a friend who believes if you are not having success, you are not trying hard enough. When I tell her I will stay the course because right now Wills is “the only game in town”, she says I have to look farther afield! [Lin/Linda: not me!]

Alright, so Wills is number 2 in the nation. Shall we look at number 3? Wilmer at Johns-Hopkins is only 154 miles. That is realistic if they have something wonderful.

Out of 116 trials in Baltimore listed, only one was even vaguely appropriate. They are doing trials with Zimura. And guess what. Those trials are happening in Philly, too.

Take home message.? This is FRUSTRATING. Take care of yourself. No sense adding insult to injury. Getting depressed will not help. When people suggest you are not trying tell them you are linked in to an active network (that’s us!) and you are working to solve your problem.

To paraphrase the armed services, those who wait also serve. And sometimes that is the hardest job of all.

Written May 30th, 2018

Next: Combination Therapies

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Hawaiian Eye

Memorial Day evening. Thus endeth another holiday weekend. I did not get my to do list ‘ta done’ but it was a respectable effort and I am done. Time to kick back just a bit. [Lin/Linda: couldn’t find a formal definition of ‘ta done’ but I guess you could say it’s the past tense of ‘ta do’ – I found headlines with variations of “From Ta Do to Ta Done!”]

We got the pool semi-clean and in working condition. We have not put the diving board up in years but the pegs for it are still there. I kicked one so hard yesterday I broke most of the nail off of “this little piggy had none”.

Ouch. Those pegs have now been spray painted a lovely, brilliant white. Contrast, my dears, contrast. No more mangling little piggies.

Here I am on a stem cell kick. I go to see the good doctor this week and I am ever hopeful I will get into a stem cell study. I have to wonder – with the fantastic results they seem to be getting with RPEs lined up and supported on a ‘patch’ – if the studies that just inject the stem cells will be stopped and reworked. The Astellas study I am signed up for is one of the ‘squirt them in’ sort. Slightly discouraging but the wait might be worth it if results will be better. [More about the studies Sue is signed up for in her page The Waiting Game.]

I am not the only one who is thinking about regenerative medicine. The injunctions I mentioned last time appear to be part of a concerted effort by the FDA. The FDA is hoping to generate some standards for stem cell research. They are thinking standards will allow for greater levels of predictability in the outcomes. After all, if you undergo a treatment, you expect a certain result.

There are more than just one or two unregulated stem cell clinics out there. CNN (Predicting the Future, March 2018) quoted the number to be around 570! The main place these are located is Beverly Hills with New York City also having its fair share. The FDA is hoping to invite these into the fold. Play by the rules and the FDA will support your efforts.

And so as to not be too terribly one-sided, I should probably mention some of the stuff that happened at ARVO. ARVO is the Association for Research in Vision and Ophthalmology. They had their meeting in Honolulu and refer to it as Hawaiian Eye.

The TV show Hawaiian Eye ran from 1959 until 1963. Did you realize anyone under 55 never saw the original broadcasts?!? Gee, I wonder if they have to explain the reference to 90% of the attendees! I feel so old!?

Anyway, Genentech is developing a port delivery system to deliver Lucentis over the course of several months. They would implant this little reservoir thingee full of medication and greatly reduce the number of shots. This is in phase 2 so it will be awhile.

The Mediterranean Diet is good for pretty much everything that ails you, including AMD. The study cited suggested a reduction of 39% in the progression to advanced AMD. Remember that generally means they are reducing the chances of turning wet. Wet AMD and geographic atrophy are the two forms of advanced AMD.

Gotta go. I will let you know if anything happens at my appointment.

Written May 29th, 2018

Next: The Waiting Game Continues

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Please Be Cautious

Waiting to go and buy a new, cheap, power mower and then get dropped off at the Y. I have been trying to use my long weekend ‘wisely’.

Translated: I will be more tired when I start the work week than when I ended the last one.

Getting things done, though. Including blog pages?.

So, how are ya? Do you remember that debacle in Florida several months back? Three blind in Florida due to a bogus and botched stem cell procedure.

The FDA sort of moves in glacial time but it does move. In May the FDA filed for permanent injunctions against that stem cell ‘clinic’, US Stem Cell Clinic, and one other one, California Stem Cell Treatment Center.

US Stem Cell – I always get a little wary when anyone ‘wraps himself in the flag’ as it were. Truth, justice and the American way? – has said they will vigorously defend themselves and cited “the rights of a patient and physician to decide whether or not to use a patient’s own cells for a therapeutic purpose without government interference”.

While that sounds lofty and very ‘American way-ish’ I wonder about a few little things like informed consent and the Hippocratic Oath. How many of us can truly say we understand stem cells well enough to be ‘informed’? The farther away medicine gets from mustard plasters and chicken soup, the harder it is for the average guy on the street to be able to give informed consent. Basically, when the medicos start talking, it comes down to having faith in the guy who is talking at you. What if your trust is misplaced?

Bringing us to the Hippocratic Oath. “First do no harm.” Believe it or not, those words are not in the oath, but close enough. Then there are a few statements about honoring those who have come before (as well as others working in the field I assume) and being part of a society. Not to mention not being ashamed to say one does not know. Hmmmmm….

Were these people open to peer review? Were they working for the good of society and advancing knowledge like a standard clinical trial or were they working for themselves…at $5,000 a procedure?

If you don’t play by the rules, the ref takes you out of the game. Simple.

And while the FDA is nitpicky – and who would NOT want all of the lice eggs out of her hair?!?! – they are not heartless. This does not apply to us because AMD is not a fatal disease, but the FDA approves the great majority of compassionate use requests it receives from the terminally ill. In other words if you have a fatal disease and you believe an experimental drug or procedure will help to save you, ask and you will receive.

How often does that happen? According to Fox News (March 13, 2018) the FDA approves 99% of requests.

So once again, please be cautious. Yes, you have a right to make foolish choices, but please don’t. Don’t let someone get you all fired up about the government trampling on your rights with your treatments. I am not a fan of big government but someone has to vet this stuff and I have not heard of any better process than the clinical trials process. Have you?

But that is just my opinion..

[Lin/Linda: here’s a new report that came out after Sue wrote this page: Woman says experimental stem cell procedure for eye disease was “too good to be true”]

Written May 28th, 2018

Next: Hawaiian Eye

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Shine a Light Under the Bed

Happy Memorial Day! Even though the summer solstice does not come for a few weeks yet, temperature-wise and culturally, it is summer! Hot time in the summertime! (Sly and the Family Stone, 1969).

We opened the pool yesterday. My husband wrenched his back in the process so the puppygirls and I are hanging at home together. No chauffeur. Such is life when you cannot drive any more.

The girls are ‘helping’ with pool maintenance. I am vacuuming and they are getting in my way. We need to get Etta water wings. I think we have the only Labrador Retriever in the world who is a bad swimmer!

Last time I reached in to fish her out, she clawed me all up. It would be nice if ‘maturity’ did not bring such thin skin!

So, moving right along, I hope you all saw Lin’s post about Dan Roberts yearly summary. I loved what Dan said about knowledge. Dan said, “Knowledge is the best way I know of to keep the fear of the unknown at bay, making living with low vision less stressful, and acceptance a little easier.” So glad that great minds think alike!? When you shine a light under the bed the monsters disappear.

Looking at what Dan has covered, I see we have some overlap, much stuff that is exclusively his. One thing he reviews is a very recently published research study that may ‘coax’ (my word) Muller glia cells into becoming photoreceptors without doing all the stem cell production stuff.

So, inquiring minds…sometimes bite off more than they can chew! Researchgate has an abstract about Muller Cells in the Healthy and Diseased Retina. The article says Muller cells ensheath all retina neurons and there is a “multitude of functional interactions” between Muller cells and retina neurons. In other words, they are work buddies and they are tight! It appears to my social scientist little mind that Muller cells help to maintain a good working environment for retinal neurons. (Please read and interpret yourself as the girl has been known to be wrong before!) There is some evidence they have a role in angiogenesis. That is you, you wet folks. Angiogenesis is the creation of new blood vessels.

Now all is not perfect with this bromance. The abstract also says “virtually every disease of the retina is associated with a reactive Muller cell gliosis”. According to Wikipedia gliosis is a nonspecific reactive change of glial cells to damage to the central nervous system. The rest of the explanation is a lot of sciencey stuff that made my eyes cross but it sort of sounded like damage to you causes damage to me and then I return the favor. Oh, and the macrophages get into the act, too. Social scientist here…would you like to talk learning theories? I am pretty good at that. ? This, not so much.

Bottom line here is our Muller glia cells and retina neurons really need one another. They share a lot and it may be possible to ‘retrain’ a Muller glia cell to do the job of a retinal neurons and actually even ‘become’ a retinal neuron. Very cool.

And now back to zen and the art of pool maintenance…with apologies to Edward Abbey. Have a good weekend!?

Written May 26th, 2018

Next: Catch-Up Days

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Highlight: Summary of Research & Development 2018

In the 2 years that Sue & I have been doing what we do, we’ve learned from & interacted with people in the field whom we trust and respect. Dan Roberts is one of them. He has had AMD for many years & has shared his journey & developed many helpful resources. He’s an author and director of the International Low Vision Support Group, an active and much-respected organization. Every year he publishes his Summary of Research and Development.  This year’s report includes the topics:

discontinued and delayed trials
updates on continuing trials
gene therapy
combination therapies
surgical interventions
nutrition
stem cells
daily living
new technology
the future

The Future

It’s important that you read his section The Future so here it is in Dan’s words:

“Finally, let’s look at the future. The rate of research and development is moving at an exponential rate, covering many areas of treatment and daily living:

– Continued refinement of surgical techniques
– Continued successes with stem cell and gene replacement research
– Advances in pharmaceutical therapies, including development of biosimilar drugs, which equal the safety and efficacy of current drugs at a lower cost
– New ways for patients to monitor their own progress at home
– Development of systems for diagnosis and treatment via the Internet, saving time and money spent for clinical visits
– Improvements in audibility of assistive devices for those who are both visually and hearing impaired
– Increased accessibility of portable independent navigation systems for travel both outdoors and indoors
– Integration of audible speech into assistive devices

We will continue to follow all of this action throughout the coming years and keep you updated with newsletters, email news alerts, and these annual summaries. Knowledge is the best way I know of to keep the fear of the unknown at bay, making living with low vision less stressful, and acceptance a little easier. – Dan Roberts

Click here for the full report.

How Can We Lose?

Hi! Hard to believe May is half over. One of these days I am going to wake up and be 90.

One of the 30ish girls in yoga declared she wants to live to be 110. Some of the slightly older folks said they wanted to live as long as they have quality of life.

What is quality of life? What is a life worth living (to put it in DBT speak)? That is something everyone has to answer for himself. However, whatever it is, we would like to think we are encouraging you to pursue it, vision loss or no.

I still don’t ‘get’ some of the reactions to my retiring from my school job. I was talking to my yogini about it the other day. She said what I say: I have been living my life for the past 64 years. (She has been living hers for 39). Why think I need to squeeze all of my ‘living’ into whatever time I have before my vision becomes even more of an impediment?

Maybe I have just been blessed what I have done for a living has contributed to my ‘living’. If you are/were not one of those people? Carpe diem, my dears. Carpe diem! Seize the day and get some living in!

Really not much happening here. I got two nights of lodging approved for the summer academy. That is the only way it will work since I will need to ride the bus down and back. Not liking that one but I am not being willful about it. Rejecting a slightly unpleasant solution – especially one that is the only solution! – is cutting off your nose to spite your face. [Lin/Linda: The summer academy that Sue refers to is the Penn State Summer Academy which is a program at the university that prepares high school students with visual impairment for college.  You can read more about it starting with Sue’s page from last year I’m a Big Kid Now.]

But enough about me. Let’s talk about me! ?…no, not really. Let’s talk about the AMD information. VisionAware did an article in which they featured comments by Denis Jusufbegovic out at Indiana University. Dr. J. did a really nice job of outlining the clinical trial process and warning people – once again – to not get taken in on bogus trials. Remember, in the legit ones, they pay you, not the other way around. He also reminded us that these are experiments, not certainties. Don’t get taken in by people who promise you the world. Desperation is one thing. Vulnerability is another.

To end the article Jusufbegovic cited the research on CPBE-RPE 1. He gave that as an example of extremely promising developments.

What is CP…whatever? It is that experiment we talked about (webpage: The Patch) in which they used an extremely thin piece of Parylene to support a monolayer of stem cells for placement. The Parylene replaces the damaged Bruch’s membrane. Looking very promising.

The researchers for CPBE-RPE 1 are Humayun and Hinton. No only did they get $38 million to continue their research, Humayun was the 2015 winner of the National Medal of Technology and Innovation. This is the nation’s highest award for achievement in technology.

Humayun is no slouch. This Pakistani immigrant is the only ophthalmologist to be elected to both the National Academy of Medicine AND the National Academy of Engineering.

The best thing about Humayun? He is putting that brain power towards solving our problems! Can’t beat that with a stick. With people like Humayun in our corner, how can we lose?

Written May 20th, 2018

Next: Life’s Transitions

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Do You Like Thai?

Greetings from Happy Valley, Nittany Lion country. If God doesn’t love Penn State, why is the sky blue and white? [Lin/Linda: FYI, blue and white are the university’s colors. Pennsylvania State University is known as Penn State University and is very highly regarded for their academics and sports programs.]

OK. ‘Nuf of the Penn State stuff. How are you? I am doing well. This is day four of a five-day conference.

I am here with four colleagues from the counseling center. We are having a good time. Doing a lot of ‘girl bonding’. We have been out for Mexican, Mongolian and Thai. Sounds extravagant but every meal I have had has not been all that much more than a Big Mac and large fries with a large drink. Four or five extra dollars is not bad for some pretty cool dining experiences. At the Mexican place he made the guacamole right at our table!

Once again, remember there are still lots of special experiences we can have with vision loss. Do you like Thai? Why not go and find out? What we remember from life, what makes us happy and gives us fresh conversation material is experience. Whom do you know who talks about his one-thousandth Big Mac? Whom do you know who listens?!?

But we are not here just to have fun….

We got three, ‘free’ books along with this training. Of course, I cannot really read them that well so I asked for the books in PDF form. They came today and I can ‘read’ them with my NaturalReader. Remember the Chafee Amendment allows for copyrighted materials to be reproduced in an alternative form for us visually impaired types. Since the conference provider had already purchased the hardcover books, they were willing to provide the PDF form for free. There are options for professional reading material for us.

So much for what I am doing, What is out there in the news?

Healio had an article outlining how this is the decade for those with inherited retinal disease. The article gave three reasons why we are in line for something big. First of all, the tools for innovations are finally in place. We have the knowledge and there are all sorts of treatment options being developed.

Remember the pricing of the gene therapy treatment we talked about? Big money returns are great motivators. Put that together with streamlined FDA approval and there are bound to be a number of companies willing to put effort into finding treatments and maybe cures.

The third reason listed was the availability of patients for the treatments. People are joining support groups and trying to find treatments for themselves. They are not anonymous and passive. They are screaming to be heard and helped.

The inherited retinal diseases the article spoke of were the rarer ones, not AMD. However, that does not mean the same scenario does not apply to us. Knowledge is building. Money can be made and I think they know where to find us!

Weird as it seems, this is the best time in history to be going blind. All sort of wonderful gains are being made. There is money to be made and drug companies are on the trails.

And now, back to the conference! One more day.

Written May 10th, 2018

Next: Old Age and Treachery

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I Need a Sherpa

Happy Cinco de Mayo! Also Kentucky Derby Day! Things happening all over the place.

I got to the bagel shop for a chicken salad bagel sandwich today. That sort of thing is big news when you don’t drive any more. No unplanned stops when you ride transportation. I had been thinking about chicken salad on a bagel for a couple of months. Sad but true. Interested enough to keep thinking about it, but not interested enough to plan a special trip.

Sometimes it is the little things that drive home the impact of visual impairment.

But I got there and I am getting to the conference too. That is tomorrow. Trying to figure out what to pack. I am thinking I am going to need a Sherpa. I have my CCTV, plus MaxTV glasses, plus handheld reader, plus my binders from DBT class. I have to take clothes for five days. One colleague asked if I were taking workout clothes. Maybe we could find a yoga studio…that doesn’t mean I need to take my mat, does it? Another colleague asked if I were taking a bathing suit. Oy vey. Like I said, I think I need a Sherpa! I was bad enough before my vision impairment; now I am hopeless.

Oh well, we plod along.

And in other news, I see Medscape revisited the concept of combo therapies for wet AMD. In their May 4, 2018 post they reported Regeneron had tried to boost the effectiveness of Eylea with an antibody, rinucumab. It did not work but they will keep trying new things. Not to be too cynical about this, but at least part of the reason is Regeneron’s earnings are not growing as fast as they were. Lack of profits, like necessity, can be the mother of invention.

Regeneron had paired with Bayer on rinucumab. Bayer usually comes out on top somehow. Historical note: Bayer’s parent company used slave labor during the Holocaust. It also had significant holdings in the company that made the poison gas for the gas chambers. They did apologize. In 1995. I believe that was at least several years after my parents gave me Bayer baby aspirin. ? Go figure. Like I said, though, Bayer generally comes out on top, so it is probably a good company to have in our corner.

But I digress, again, still, whatever. I assume most of you have lively minds and find some interest in these little diversions.

Regeneron has tried several other compounds paired with Eylea already. None have been very successful but I doubt they are done trying. One of these attempts is going to find something that will significantly improve the efficacy of Eylea and thus improve the lives of you wet folks.

Just keep the faith. Amazing things are happening all over the place.

Written May 5th 2018

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From the Inbox

Monday morning and I am waiting for the van to go to work. Thus endeth another weekend.

Next week at this time I will be just about starting a five day long seminar. My life just keeps pulling me along….by the hair…as I scream.

No, not really. It is all by choice. I could always say “no!” But I don’t.

Taking a minute to look at my old email, I found a really old Medscape post from 2015.  And no, I am not THAT far behind. It was an article referenced by another article. Anyway, the article was about how Pegpleranib is being used as a pretreatment for wet AMD. They are experimenting with this stuff in patients who are treatment resistant. The hope is that Pegpleranib will increase the effectiveness of anti-VEGF medications.

Although it was a preliminary study the results suggested pretreating with Pegpleranib will not only lead to better visual acuity but it will also increase the duration of effectiveness of the anti-VEGF medication and, in addition, prevent fibrosis. Hold on…fibrosis? Be back soon with some info on THAT little wrinkle.

I’m back. After a day that finally saw 70 degrees Fahrenheit and a hip hop class, all is right in my little world. Keep me warm and let me dance. It appears I am pitifully easy to please!

Onward…I am looking in EyeWiki and found an interesting bit of info – not related to fibrosis, but interesting. EyeWiki quotes the cost of neovascular AMD as being $5.396 billion annually and the cost of dry AMD as being $24.395 annually. That is loss of GDP, gross domestic product. I TOLD you this stuff is breaking the bank. Now do you believe me? ?

OK. EyeWiki says there are fibrous disciform scars formed when there are bleeds. Regular Wikipedia says fibrosis is related to the process of scarring. The process apparently starts when the macrophages – remember the big eaters? – that are sent to clean up the mess from the bleed start secreting a chemical that will trigger the fibrosis. It all keeps coming back to the complement immune system. It appears the Pegpleranib dampens down the chemical signal the macrophages send out and reduces the fibrosis.

The Wikipedia piece goes into a whole lot of explanation about the chemical process that I about half understood. Feel free to look at it if you are interested in that sort of stuff.  Social scientist here; remember?

That is about it for now. I have places to go, people to see, dogs to walk , a lesson plan to write and all sorts of housework to avoid?. I will try to check in later with more gems from my mailbox…or not. Caio!

written April 29th, 2018

Next: That Little Summer Dress

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News from Research

Hey, hey, how y’all doing? I did my Zumba class and half a yoga class and then walked up to the street fair to help with the Y’s demonstration class. Had a hamburger and fresh cut fries as well as an ice cream. I did mention I have a horrible diet; right? Then I waited nearly an hour for transportation. Geez.

If I did not have to walk along a busy road, I would consider walking the three or four miles it is to get home. I probably would get home faster.

Sometimes I actually consider just staying home because of the hassles with the damnable transportation. Then common sense grabs me – or I revert to my old, ornery self – and decide they are not going to break me!

Oh, forgot to mention, I begged, finagled, whatever a ride to Mom Prom tonight. I bought a ‘new’ prom gown at Sal Val. It was $7.50. Also silver high heels. $4.00. Very thrift store chic here! [Lin/Linda: if you are just joining us, the Mom Prom is a party for females over 21.  You buy a gown at the Salvation Army (Sal Val) thrift store.  And you don’t have to be a mom.]

Okay, enough of me. Let’s actually do some eye news.

One of those Healio articles from November, 2017, indicated they are now combining therapies for diabetic macular edema. They dosed people with Lucentis and then shot them with a focal laser. While they did not find any significant difference in the number of treatment required between the dose plus laser and the treat and extend groups or even differences in the visual acuity numbers of the groups, all treatments tried were effective.

So, in essence, they have started to ‘play around’ with treatments and may just find some combo treatments that give better results than singular ones. Personally, I am on two blood pressure medications. Either of them alone did not do a thing for me but together I have good control. There may be some people who will respond beautifully to the one, two punch of an anti-VEGF and laser combo just like I respond to my two, blood pressure medications. You never know.

Also in Healio last November – I did mention I got a bit behind; yes? – they reviewed trials of another anti-VEGF treatment. You wet people sure are popular with the researchers!

This new one is called brolucizumab and it is a “single chain antibody fragment VEGF inhibitor”. They were dosing every 12 weeks and the results were comparable to those obtained with Eylea. Also, side effects were less. In short, one more option for keeping your bleeds at bay. Pretty good.

And one more thing before I go, also back in November Healio ran a follow-up on a concept they reviewed in 2016. It appears about 100 people are now running around with macular hole repairs using transplanted autologous retina tissue. Cool.

Autologous means they get the tissue from the same person they are transplanting the tissue into. The tissue to be transplanted is taken from the superior peripheral retina.

Now, will the vision be as sharp? What are they doing to ensure the transplanted retina connects with the neural network? No clue. What I do know is they have started talking about using this technique to treat macular degeneration.

All told, ophthalmological research is speeding along on a number of different trajectories. Things are happening everyday and it really is the best time in history to be going blind! Hang in there.

Written April 27th, 2018

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