2020 NOVEMBER : simplebooklet.com

Newsletter November, 2020MESSAGE FROM THE PRESIDENTDear Readers,This has been a busy and rewarding time for the Foundation. On the virtual front, TGF hosted a viewing of the award-winning lm Going Blind: Coming Out of the Dark About Vision Loss and then welcomed an audience of more than 200 registered viewers for a live conversation with the lm’s director/producer Joe Lovett, glaucoma specialist Dr. Joel Schulman and individuals in the lm who are living with severe vision loss in extraordinary ways. On Wednesday, December 9, we will follow that up with a Zoom program to provide an overview of low vision rehabilitation – a presentation by expert Dr. Delaram Shirazian, Assistant Clinical Professor at SUNY College of Optometry, followed by a live Q&A. On the funding side, I’m delighted to report that our Art Challenge to Celebrate Vision raised more than $38,000 in support of the Foundation’s next research grant cycle. You can read more about the artists and art lovers who participated on our website. In the last issue I announced the expanded scope of our research program that awards seed grants for innovative projects that can lead to larger and impactful advances. I’m delighted to report that a record number of grant proposals have been submitted for the next cycle on subjects ranging from exfoliation syndrome to the importance of blood ow in glaucoma, factors other than IOP that cause damage, and animal models to test novel treatments. As you can see, these dicult COVID months have not slowed our eorts. We thank all our friends and supporters who help us make our research and educational initiatives possible. We are most grateful.Elena Sturman

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Doctor, I Have a Question. What is the status of in-home tonometry? Answer by Louis R. Pasquale, MD, FARVOProfessor of Ophthalmology, Site Chair, Dept, of Ophthalmology, Mount Sinai HospitalDeputy Chair, Ophthalmology Research, Icahn School of Medicine at Mount SinaiDirector, Mount Sinai / NYEE Eye and Vision Research InstituteMeasurement of intraocular pressure (IOP) is an ophthalmic vital sign and patients would like to have more IOP measurements so that they are more informed about their disease. During the social lockdown triggered by the COVID-19 pandemic, the measurement of IOP in glaucoma patients was deferred. The pandemic exposed a glaring deciency in remote glaucoma care – it is not easy to measure IOP outside the ophthalmologist’s oce. Generally speaking, the self-measurement of IOP, like the self-measurement of blood pressure, is easier said than done. In principle, the iCare home tonometer meets many criteria for accurate measurement of self IOP: the device is portable, it is accurate, no anesthesia is needed, the skill can be transferred to the patient and there are anecdotal reports how home tonometry can provide real insights into glaucoma management. The one major drawback is the device is too expensive for most patients, thus it is hard to adopt for use on a wider scale. It is interesting that patients with unexplained syncopal episodes (episodes of passing out unexpectedly) can receive heart monitors and loaner dedicated cell phones that transmit hours of cardiac data to a central command center. This data can be reviewed by a cardiologist at a later time and all of this is typically covered by insurance. Usually a third party handles the delivery and pick up of these devices. Currently, the FDA has approved the iCare tonometer to be prescribed to patients and CMS can reimburse doctors for the analysis of long-term (longer than 1 month) IOP measurements. This is good news for patients who can aord to purchase the iCare tonometer outright but it is not feasible for patients who cannot aord the several thousand dollar cost to purchase the device.A viable intermediary company, comparable to the companies that dispense home heart monitors, is needed to make the iCare tonometer available to glaucoma patients. Patients with moderate-to-advanced disease and rapid visual eld progression despite normal IOP in the oce would be logical candidates for their use. The intermediary party would purchase iCare tonometers and rent them to patients for long term use. They could also recoup costs by submitting new remote physiological monitoring charges established by CMS in 2019 for setting up such a device. The ophthalmologist could charge a monthly fee for interpreting the trend in IOP data collected on a monthly basis. There is no other viable tool for remote IOP monitoring that meet the criteria that the iCare home tonometer meets. For example, the Tonopen is portable and accurate but requires anesthetic drops and cannot be used for self-tonometry. Alternative models to get IOP measurements for patients who can’t get to the eye doctor’s oce involve measurement by another skilled professional. They include drive-by IOP measurement services which may not be viable in busy urban settings or collection of IOP data in a kiosk or local pharmacy. Patients and doctors need to advocate for home tonometry so that glaucoma care is improved.

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Newsletter November, 2020Two New Classes of Glaucoma Eye Drops – How do they Work?Until late 2017, the glaucoma medication toolbox lacked a treatment that directly targeted the trabecular meshwork, the diseased tissue in glaucoma. The TM is the spongy tissue located near the front of the eye through which the aqueous humor ows out of the eye and is the primary outow pathway. Most other eye drops have targeted only the secondary drainage system, the uveoscleral pathway, or have reduced aqueous production.In 2018 two new drugs that represent entirely new classes of glaucoma medication were introduced -- Vyzulta™ (latanoprostene bunod ophthalmic solution 0.024%, from Bausch & Lomb) and Rhopressa® (netarsudil ophthalmic solution 0.02%, from Aerie Pharmaceuticals). Each have mechanisms of action dierent from those of the drugs that were previously available. Vyzulta, the rst new class, increases outow through both the trabecular network, the primary outow pathway, and the smaller uveoscleral pathway. Latanoprost works to lower intraocular pressure by opening the uveoscleral pathway much like other prostaglandin analogs.(e.g. Xalatan). But another component of the drug is related to nitric oxide, which is thought to relax the trabecular meshwork and increase aqueous humor outow.Rhopressa, represents another novel class of medications called ROCK inhibitors. These inhibit Rho kinases, enzymes that control cellular structures involved in cell shape and movement. Rhopressa reduces IOP specically by improving outow of the trabecular meshwork, a pathway from which most of the aqueous humor drains. Aerie launched Rhopressa in the United States in 2018 and in 2019 launched Rocklatan. Rocklatan is a once-daily eye drop that is a combination of latanoprost, the most widely-prescribed prostaglandin analog, and netarsudil, the active ingredient in Rhopressa which targets the trabecular meshwork. The diseased trabecular meshwork is considered to be the main cause of elevated IOP in open-angle glaucoma and ocular hypertension. ________________________________________________________________________________ APUP Online Support Group Moving from Yahoo to GoogleAs Yahoo is shutting down its Yahoo Groups on December 15, we are moving our APUP online support group to Google Groups. If you are a member of APUP, we hope you’ll make the move with us. Click here https://groups.google.com/g/tgfapup for the link to sign up for APUP on Google Groups. The transfer from Yahoo is not automatic. We welcome new members! Just click on the link above. During these challenging times it’s especially important to have a way to stay connected with others who share our needs and concerns

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LIVING WITH GLAUCOMAMEET THE GILMARTINS“I’ve always looked ahead to anticipate my future needs and to plan for what’s to come. That’s been my motto for years. Given my glaucoma, I could say it’s a way of life that’s called for,” says John Gilmartin, who has lost his sight in his left eye, but still sees a bit with 20/2400 vision in his right eye.Planning ahead and adapting to life has been the mantra for both John and his wife, Maryann. “We’ve got dierent way of operating now,” John jokes. “We garden together. She’s sensitive to colors and how things look. I do the weeding,” he says with a chuckle. “I was always the driver; Maryann was the planner. But when I could no longer drive, she relearned to drive in her early 60s.”John, now in his late 70s, is a retired businessman who was a CEO from the Boston area. Maryann was a pre-school teacher and volunteered in public schools and museums. In retirement she signed up for pastel. painting workshops. “During the pandemic. “I nd the time I spend at my easel is very therapeutic, comforting and rewarding,” she says. “My only disappointment is that my husband cannot appreciate my painting.” Maryann participated in the Glaucoma Foundation’s recent Artists Challenge with a painting depicting a rural landscape near the Gilmartin’s Vermont home. They spend about six months in Vermont and return to their Connecticut retirement community ∫for November through April.Glaucoma runs in John’s family. His older sister has it, so he was diligent about being tested. Then, in 2003, while walking outdoors he noticed that he couldn’t read a sign very well. He went to an optometrist, who immediately referred John to a glaucoma physician who prescribed multiple eye drops which lowered his IOP, but it didn’t stop his vision loss. He was diagnosed with advanced open angle glaucoma. He was always curious how the damage could progress so suddenly and severely. A second opinion was sought and a new doctor in Boston then suggested surgery – Over time John has had three surgeries on his left eye, but none have worked.“I have lots of devices that are helpful, such as one that reads my mail. And I’m reading more books than before. I downloaded them from Apple iTunes onto my iPod. Also, it is an activity Maryann and I sometimes do together. I enjoy TV on a 75” TV mounted on the wall – I can keep up with the Red Sox baseball games and Netix movies. “Alexa” is pretty responsive, too.“We also love attending music concerts and the theater in New York which we enjoyed until the pandemic closed it all down. I can enjoy certain types of plays and have a hand-held monocular which lets me look at an actor who is speaking. Maryann is excellent at selecting plays I can enjoy and acts as my translator for what I can’t see. We have a place to stay in the Lincoln Center area and have always loved the Big Apple Circus nearby. But now nothing is going on in the city.“Anticipating and planning is just in my nature. We have a 40-year marriage that now requires adjustments, and we always look for ways to share time together.

2020 NOVEMBER

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