News for Supporters and Friends

2020 FALL EDITION

Two patients in Pittsburgh first in the United States to receive a promising PRIMA system to restore vision for severe Macular Degeneration by Craig Smith

Scientists and clinicians in the Department of Ophthalmology at the University of Pittsburgh School of Medicine had the distinction in January 2020 of implanting the first patient in the United States with the PRIMA System. This procedure is part of a clinical trial that aims to restore partial vision to advanced age-related macular degeneration (AMD) patients.

In This Issue Deep Learning to Enhance Care 2 A Lifetime of Care and an Everlasting Commitment to Help Others

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Do You Hear What I Hear?

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Q & A with Dr. Andrew Eller, Ophthalmologist 5 Advancing Care by Advancing Access

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The Eye & Ear Foundation Ambassador Program

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The Hour of Inspiration and Hope

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“This is an important milestone for vision restoration,” says Joseph Martel, MD. “This device has the potential to impact patients with advanced AMD associated visual impairment, for which there is currently no satisfactory FDA approved treatment.”

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MD is an eye disease that occurs when a part of the retina called the macular is damaged. Patients with AMD lose their eyesight in the center of their field of vision while retaining peripheral vision. AMD currently affects more than 11 million people in the United States and is expected to double by 2050 as the U.S. population continues to age. The PRIMA system consists of a small, wireless photovoltaic chip that is surgically placed under the degenerated macula and a pair of augmented reality glasses that include a built-in camera and infrared projector. Once in place, the chip and glasses work together to convert infrared light from the glasses into electrical signals that are carried by the intact retinal neural network to the optic nerve and then to the brain. After being implanted with the device, patients undergo intense vision training and rehabilitation to learn how to interpret these electric signals and, in conjunction with their limited remaining natural vision, integrate the visual input from the prosthetic vision. PRIMA was developed by Pixium Vision in collaboration with the inventor of the patent, Daniel Palanker, from Stanford and the teams of the Institut de la Vision, led by Dr. José-Alain Sahel. With the first patient having been implanted in January, doctors are anxious to increase clinical trial participants and follow their progress. “Currently, two subjects have been implanted and have had no serious study-related adverse side effects to date,” states Dr. Martel, an Assistant Professor of Ophthalmology, Retina and Vitreous Services. “At this point, patients have Continued on page 3

Deep Learning to Enhance Care by Carrie Fogel

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ore than half a million head and neck cancers are diagnosed each year globally, with an increased amount of cases being found in a much younger population. Younger men and women without the traditional risk factors, like tobacco and alcohol use, are part of a growing population of patients who develop the disease from the human papillomavirus. The majority of patients with head and neck cancer (HNC) present with an advanced stage of the disease and require treatment with multimodal therapy, which includes a combination of surgery, radiation, and chemotherapy. Although these aggressive treatment regimens have resulted in increased survival, especially for those with human papillomavirus (HPV) associated HNC, this improved survival comes at a cost to the survivors, compromising their functional capacity and physical health, and impacting the family or support network of the survivor. As the intensity of the standard treatment protocol has amplified, survivors experience a substantial increase in acute and late treatment-related toxicities, resulting in the need for emergency room and inpatient visits. A retrospective analysis showed that of 147 head and neck cancer patients undergoing a combination of radiation and chemotherapy at our institution, 37%

are hospitalized during or shortly after treatment. The main reasons for Emergency Room visits and hospitalization were dehydration, difficulty swallowing, pain, nausea/vomiting, fever, and sudden drop in blood pressure. In 2016, Jonas T. Johnson, MD, Chairman of the Department of Otolaryngology at the University of Pittsburgh, and Marci Nilsen, PhD, RN, Assistant Professor in the Department of Acute and Tertiary Care in the University of Pittsburgh School of Nursing joined together to establish the UPMC Survivorship Clinic for Head and Neck Cancer. In addition to improving the care that survivors receive by coordinating care and providing patients with comprehensive plans for their recovery, Drs. Nilsen and Johnson are beginning important research trials that offer new models of care and study their efficacy. With nearly three years of data collected from patient-reported outcome surveys, which assess patients’ most common symptoms and problems they face during and after treatment, we are now uniquely positioned to implement a pilot project to enhance care coordination and reduce hospitalization for HNC patients. To do this, support is needed to secure the time of two healthcare providers, a registered nurse,

and a speech-language pathologist, to implement the project two days per week. The Enhanced Care trial places two healthcare providers embedded at Shadyside Hospital, two days per week, to enhance symptom monitoring and better coordinate care during and immediately after completion of therapy when patients are suffering from acute effects. The intent is to reduce hospital utilization (i.e., hospital admissions, emergency room visits, inpatient observation) by 15%. Dr. Johnson and Dr. Nilsen believe that this can make a difference in the experience that patients have during treatment by deploying interventions early and making patients aware that there exists a first point of contact who they can reach out to as soon as symptoms of their treatment arise. This project represents a transition toward improved value of healthcare. The UPMC Hillman Cancer Center has recognized the need to improve and expand the type of Survivorship Care that is offered. With the support of Dr. Robert Ferris, Director of UPMC Hillman Cancer Center, Associate Vice Chancellor for Cancer Research, and Professor of Otolaryngology, of Immunology, and Radiation Oncology, the Head and Neck Survivorship Clinic is implementing this pilot project at the Hillman Cancer Center in Shadyside. Additionally, the UPMC Health Plan is introducing the use of coordinated care through the Oncology Care Model of reimbursement for Head and Neck Cancer patients. Our pilot project will collect and present data to the Health Plan, which is essential to establish the value of this approach. Coordination of care and enhanced navigation can lead to reduced hospital visits and cost savings. If successful, it will form a basis for reimbursement of coordinated care.

Dr. Jonas Johnson and Dr. Marci Nilsen during a patient visit in the Survivorship Clinic. 2

This project is generously supported by the Beckwith Foundation and the Barton Family.

A Lifetime of Care and an Everlasting Commitment to Help Others by Heather Chronis Danek

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t is rare today to have a 60-year commitment to anything. For Margaret and William Barati, two of their most important relationships have lasted over 60 years – first, their marriage, which is now in its 66th year, and second, their relationship with the Department of Ophthalmology at the University of Pittsburgh and UPMC Eye Center, which began 63 years ago when their infant daughter, Diane, born with cataracts started treatment. Mr. and Mrs. Barati first brought Diane to Eye and Ear Hospital on New Year’s Eve when she was three months old to have her eyes examined by the late Joseph Novak, MD. Dr. Novak realized very quickly that Diane needed surgery that could only be performed on an infant at one place – Johns Hopkins Hospital in Baltimore. Dr. Novak reached out to a medical colleague at Hopkins to help facilitate Diane’s surgery and care. Following her successful surgery, Diane was treated in Pittsburgh by Dr. Novak for the rest of his career. In fact, they developed a very close bond, which included Dr. Novak calling and writing Diane to encourage her as she left for college and, then, as she entered the workforce. This encouragement allowed Diane to thrive and succeed in not only her professional life but also in her favorite hobbies, including classical music, as she plays several instruments, including the flute.

As Mr. and Mrs. Barati were considering their estate and bequest plans, they wanted to support organizations that had helped their family during their long marriage. At the top of their list was the Eye & Ear Foundation, the fundraising organization for the Department of Ophthalmology at the University of Pittsburgh School of Medicine. After an indepth discussion with the Foundation, Mr. and Mrs. Barati made the decision to fund the Barati Family Faculty Award in Ophthalmology, which will allow clinicians and researchers in the Department to engage in targeted, impactful research for macular degeneration and glaucoma, under the direction of JoséAlain Sahel, MD, Chairman of the Department of Ophthalmology. Through a combination of funds that will become available upon their passing, Mr. and Mrs. Barati will make the Barati Family Faculty Award, the first of its kind, a reality. “We have always done everything as a team, so we made the decision to support the Eye & Ear Foundation as a team,” stated Mr. Barati following the signing of the documents for the Award. The Eye & Ear Foundation is grateful that the Barati Family has included it in their estate plans. “It has been an absolute delight working with Mr. and Mrs. Barati over the summer to develop these plans. Much of the credit goes to Diane as she was so encouraging of this idea with her parents straight out of the gate,” states Heather Chronis Danek, Director of

The old Eye and Ear Hospital where the Barati’s sought care for Diane when 3 months old. Development. Named awards such as these can be funded through various methods, including stock transfers, outright donations, and, of course, estate bequests. In addition, individually designed bequest plans can be developed by the Eye & Ear Foundation that reflect a donor’s interest. To learn more about estate bequests, please email heather@eyeandear.org or visit eyeandear.org.

Continued from page 1 perceived visual sensitivity and bar orientation in the former central scotoma without loss of residual natural acuity, and we are planning further testing of prosthetic vision, including letter recognition and acuity.” This trial is running concurrently with the firstin-human trial in France, where patients have already begun to demonstrate the ability to identify sequences of letters and numbers. Dr. Martel believes that the University of

Pittsburgh and UPMC implanting the first U.S. patient is an important signal that Pittsburgh is fast becoming an international leader in vision research and care. “It demonstrates our capability and motivation to be leaders in vision restoration for blindness. Dr. JoséAlain Sahel, Chairman of the Department Ophthalmology and the Exceptional Class Professor at the Sorbonne University in Paris, has an unparalleled record of propelling both

people and institutions to success, which enables a culture of innovation, partnership, and results necessary to carry out this important milestone and others to come,” explains Dr. Martel. For more details on the clinical trial or to support the research conducted in the Department of Ophthalmology at the University of Pittsburgh School of Medicine, please visit eyeandear.org. 3

Do You Hear What I Hear? by Heather Chronis Danek

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n today’s university environment, a research collaboration between departments often results in not only more creative solutions but also quicker results by bringing together teams that have extraordinary skills in solving multiple issues within a puzzle. A current example of this type of collaboration is the research that Carl Snyderman, MD, MBA, Department of Otolaryngology, University of Pittsburgh School of Medicine, and Bharath Chandrasekaran, PhD, Department of Communication Science and Disorders, School of Health and Rehabilitation Sciences, University of Pittsburgh, are conducting to understand the role of the brain in hearing and understanding. “Real innovation occurs in uncharted territory at the juncture of different disciplines. The University of Pittsburgh and UPMC provide the ideal environment for such collaboration. We rely on our senses to make sense of the world around us. The research that we are doing could have profound

implications for improving the quality of life for patients with impaired senses,” explains Dr. Snyderman. Not all hearing problems can be solved with a hearing aid. Funded by generous support from the Edith Trees Foundation through PNC Charitable Trust, the main question to be answered by the research is why people hear what they hear, and why are some patients unable to hear the same things as the rest of the population. The brain holds so many mysteries, including the processing of sound stimuli through neural pathways. Do patients with neurological disorders hear “differently?” How does the brain work to process sound in a healthy individual, and can the brain be adapted through surgery and/or rehabilitation in those that have neurological damage to hear as a healthy patient would? To understand these issues, Drs. Snyderman and Chandrasekaran are utilizing novel neuroimaging methods to

determine patterns among patient groups. From there, new treatment strategies to improve sound recognition will be explored with patients, with the potential to benefit children with congenital hearing loss to adults suffering from brain trauma or stroke. States Dr. Chandrasekaran, “this is an exciting opportunity for us to break the silos between basic science and translational application and take neuroimaging technology that exists only in the lab, to the real-world. We each sense our auditory world in our own unique way and our collaboration will pave the way in developing personalized auditory rehabilitation, moving away from one-sizefits-all solutions.” To receive updates on our hearing research or to support this important work, please email heather@eyeandear.org or visit eyeandear.org.

The photos from the Brain and Auditory Sciences Research Initiative (BASRI) facility, located within the School of Health and Rehabilitation Sciences. BASRI is a shared lab space that promotes team-based science. The picture listening room is designed to test spatial localization and real-world listening environments. In the first photo: CSD PhD student Jacie McHaney is putting the electroencephalography (EEG) cap on former post-doctoral scholar Dr. Fernando Llanos Lucas while BASRI Investigator Dr. Christopher Brown supervises. Second photo: Former post-doctoral scholar Dr. Fernando Llanos Lucas wearing the EEG cap while viewing visual stimuli displayed on the monitor in front of him. 4

Q & A with Dr. Andrew Eller, Ophthalmologist by Craig Smith

Dr. Andrew Eller, Opthalmologist Why am I seeing Floaters? Consider the eye or eyeball as a camera with a lens in the front and film in the back. The retina works like the film in a camera and lines the inside of the eyeball as a wallpaper. The central cavity of the eyeball is filled with a gel called vitreous. The vitreous gel is like eye white, clear, and gooey. The vitreous serves an essential function of nourishing the retina as it develops when one is still in the womb. As we age, the vitreous gel begins to liquefy, and it pulls away from the retina. In nearsighted people, this can actually occur earlier in life. This separation of the vitreous from the retina may be very subtle, or it may be very obvious. When the gel separates, it is often like pulling a piece of tape from your wallpaper. The tape may pull a few flecks of paper or paint chips from the wall. When the vitreous gel pulls away from the retina, it may pull some “paint chips” from the retina. This often appears as a ring or cobwebs. When you look at something bright like a computer screen, a newspaper, or the sky, you may see these cobwebs floating in the vision. They are never seen in dim lighting or a dark room. In order to see these floaters, there must be a lot of light entering the eye. In a sense, the floaters are casting a shadow on the retina. This process of separation of the vitreous gel from the retina is called Posterior Vitreous Detachment or PVD. This is not the same as a retinal detachment. Why do I see Flashing Lights? When the vitreous gel pulls on the retina, there is never any pain or headache. However, this pulling can stimulate the retina and produce a flash of light. These light flashes tend to be very brief, like a lightning streak, often appearing in the upper part of your vision. Although brief, these flashes may be repetitive. Interestingly, these flashes tend to only be seen in dim light. The flashes of light from a vitreous separation (PVD) are very different from the type of light flashes seen with an ocular migraine.

Ocular migraine flashes tend to last much longer, occur in daylight, and are usually very geometric in configuration. What are the risks of a Posterior Vitreous Detachment? When the vitreous gel separates from the retina in addition to creating floaters, in some people, the retina may actually tear, usually in a horseshoe shape. There are many blood vessels within the retina that serve to nourish it. When the retina tears, it may also tear a blood vessel. When this occurs, the eye can fill with blood, which looks like reddish-black smoke. Sometimes the bleeding can be very intense and totally block the vision. An untreated retinal tear can lead to a retinal detachment. How do you treat a Retinal Tear? When a person has a sudden onset of floaters and flashing lights, this is a sign of an acute posterior vitreous detachment or PVD; they need to have an urgent dilated retinal examination to look for a retinal tear. If a retinal tear is detected, it must be treated with either laser or cryotherapy (using a freezing pencil). Without treatment, a retinal tear can develop into a retinal detachment. How do you treat a Vitreous Hemorrhage? When the vitreous hemorrhage is really dense, not only does it block a person’s vision, it also blocks our ability to see the retina. When we are unable to see the retina, then a person can possibly have a retinal tear. Again, an untreated retinal tear can lead to a retinal detachment. Therefore, we will often recommend surgery to remove the blood, simply to allow us to examine the retina for tears that need to be treated. This surgery is called a Vitrectomy and it is done in the operating room. How do you treat a Retinal Detachment? Consider the retina as the wallpaper inside the eyeball. In order to remove wallpaper, one must use steam to get beneath the seam and break the seal, and it peels away.

The retina is “seamless.” In order for the retina to detach, there must be a defect for fluid to seep beneath the retina and create the detachment. A PVD occurs as the vitreous gel begins to age or liquify. When there is a tear in the retina, this liquified gel will seep through the retinal tear, leading to the formation of a retinal detachment. Once the retina detachment occurs, it cannot be treated with laser or a freezing treatment alone, and surgery is performed in the operating room. Sometimes a scleral buckle or band is placed around the eye, and in other situations, a vitrectomy is performed to remove the gel. Then a gas bubble is injected into the eye to hold the retina in place, and laser treatment is applied. In some instances, a small retinal detachment can be fixed in the office with the injection of a gas bubble followed by laser treatment a day or two later. My floaters are really bothersome. What can be done about them? After a couple of months after the development of floaters, the risk of getting a retinal tear and detachment are significantly reduced, but the floaters may still be present and very annoying. Over time, these floaters tend to shrink just a bit. Fortunately, most people are able to adapt and ignore these floaters. Sometimes people find these floaters to be almost incapacitating. There are advertisements for laser treatment of floaters. For some people, this treatment may be successful, but there are some associated risks, such as damage to the retina. Other times the laser will breakup the larger floaters and create zillions of very small floaters, which can be worse. Vitrectomy surgery can be performed to remove floaters, but it should be considered an option of last resort. The risks of a vitrectomy in an eye with floaters and 20/20 vision may be substantial as they include infection, bleeding, glaucoma, cataract formation, and retinal detachment. Some of these conditions can lead to blindness. 5

Advancing Care by Advancing Access by Carrie Fogel

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or thirty-five years, the Eye & Ear Foundation has been committed to supporting promising research in the Departments of Ophthalmology and Otolaryngology at the University of Pittsburgh that has the potential to transform patient care and patient outcomes. Better care leads to better health, and we are fortunate to be living and working in a region with the highest quality academic medical center that attracts experts from around the globe to improve the care we can offer to people. However, while Pittsburgh has so many excellent resources and services to provide those with medical needs, we know that there are people within our community that are still unable to access the care they need. Access to care and other factors, more commonly known as ‘social determinants of health,’ can account for as much as 80% as a person’s health or wellbeing. These determinants, such as socioeconomic factors, physical environment, and health behaviors, all contribute to one’s overall health, and we know that without addressing these needs, the care that our hospitals and our research can offer is less effective.

will offer guidance for pursuing projects and outside partnerships. The Community Outreach Committee is led by Eye & Ear Foundation Board member and community leader Nancy D. Washington, PhD. Dr. Washington has long been a champion for social causes in Pittsburgh and has a wide range of experience working with community organizations to focus their efforts on equity. “The Eye & Ear Foundation has demonstrated its commitment to the value of health equity by providing to our community programs such as HearUP, Hearing Loss and Social Isolation, and the Guerilla Eye Service.” Dr. Washington states. “Our committee plans to amplify these and other new programs that address the vision and hearing needs of children and adults who are living in neighborhoods that have been marginalized and underserved, and promoting and support research and patient care initiatives that will be replicable, impactful, and sustainable.” Among the current initiatives to reach our community, such as those mentioned by Dr. Washington, our Departments are looking

for new ways to support the overall health of our community. In the Department of Ophthalmology, a patient champion was recently hired to work with patients oneon-one to find solutions to issues such as transportation, prescription assistance, food access, insurance, among others. Additionally, Dr. Sahel and colleagues within UPMC and the UPMC Health Plan are finding new ways to work together to begin programs such as an internship program for high school students and a workforce development initiative. In the Department of Otolaryngology, Dr. Johnson is working through the Survivorship Clinic to collect data on health literacy and its correlation to health outcomes, with the intent of providing information and recommendations for interventions to providers around the country. Both Chairmen and the members of this Committee look forward to working together to help the Eye & Ear Foundation grow its footprint of making our community a healthier, more equitable place to live. Should you wish to support our community outreach initiatives, please email carrie@ eyeandear.org.

Department Chairmen, Jonas T. Johnson, MD, and José-Alain Sahel, MD, have spent their careers treating patients with vision loss, hearing loss, cancers of the head and neck, and other life-altering conditions. Over the past several years and months, both Dr. Johnson and Dr. Sahel have sought ways to address health in more systemic methods, getting to the root cause of why patients cannot comply with treatment and seeking ways to educate, empower and connect patients to resources that will improve their understanding of and access to medical care. To support the Chairmen and these projects, and to emphasize the importance of equity, inclusion, and diversity to our Departments, the Eye & Ear Foundation Board of Directors has formed the Community Outreach Committee, which The Departments of Ophthalmology and Otolaryngology at the University of Pittsburgh School of Medicine have made Access to Care for All a priority. 6

The Eye & Ear Foundation Ambassador Program by Heather Chronis Danek and Craig Smith

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he Eye & Ear Foundation is proud to announce the inaugural class of Ambassadors for the organization. Voted on and approved by the Board of Directors of the Foundation, this group of individuals has a passion for the work of the Departments of Otolaryngology and Ophthalmology at the University of Pittsburgh. Each, in their own way, brings a desire to help grow the breadth and the reach of the Eye & Ear Foundation along with helping to raise significant funding from their unique network of family, friends, and colleagues.

Ambassador “A person who acts as a representative or promoter of a specified activity.”

Introducing the inaugural Ambassador class: Gail Bleach, PhD first contacted the Eye & Ear Foundation over five years ago to express interest in vision restoration research. A retired clinical psychologist, Dr. Bleach, built a successful practice in Silver Spring, Maryland. Dr. Bleach said it has always been her intention to spend her retirement as a philanthropist, specifically raising support for vision research, as she has cared for her younger brother, now 65, who has been blind since birth. Dr. Bleach also would like to begin making connections on behalf of the University of Pittsburgh’s vision research and has expressed a desire to host events on behalf of the Eye & Ear Foundation in the DC area.

Peggy Smyrnes-Williams, JD, currently serves as Vice President of Ladies Hospital Aid Society at UPMC Montefiore. In that role, Mrs. Smyrnes-Williams has advocated support for the Eye & Ear Foundation for three separate Ladies Hospital Aid Galas. In addition, she is a devoted supporter of a wide variety of Foundation projects, including the new Vision Institute and the Head and Neck Cancer Survivorship Program. Mrs. Smyrnes-Williams holds memberships on the Carnegie Museum of Natural History Board of Directors and the Pittsburgh Festival Opera.

Mary Crawford is the Founder and CEO of Crawford Consulting Services, a large construction consulting firm based in the Penn Hills area. Ms. Crawford founded the company in 1993 and is the sole owner. Some of the more recognizable projects that Crawford Consulting Services has worked on are U.S. Bank Stadium in Minneapolis, Smithsonian Environmental Research Center in Maryland, and the U.S. Military Academy Science Center at West Point. Mary has been a supporter and donor of the Eye & Ear Foundation since 2011, with an interest in both Otolaryngology and Ophthalmology research.

Nancy Washington, PhD, a longtime supporter of Ophthalmology research at the Eye & Ear Foundation, joined the Foundation’s Board of Directors in 2018. A passionate proponent of spreading healthcare into underserved areas of Pittsburgh, Dr. Washington has been a community leader for over 30 years. In addition to the Eye & Ear Foundation Board, Dr. Washington is a member of the Carnegie Museum of Art Advisory Board and the Point Park University Board.

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If you no longer wish to receive our newsletter, please submit requests to our mailing address, or email optout@eyeandear.org The official registration and financial information of the Eye & Ear Foundation may be obtained from the Pennsylvania Department of State by calling toll free, within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement. The Eye & Ear Foundation of Pittsburgh is a nonprofit 501 (C)(3) organization. Our mission is to support the research and academic efforts of the Departments of Ophthalmology and Otolaryngology at the University of Pittsburgh. Donations to support our research initiatives can be made online at eyeandear.org or by returning the enclosed envelope. For more information on the Foundation, our research, or the articles in this newsletter, please contact Katherine Troy, Director of Operations, at katherine@eyeandear.org or 412-864-1300. Medical Disclaimer: The Eye & Ear foundation does not assume any responsibility or risk for the use of any information contained within the newsletters. Reliance on any information available through the newsletters is solely at your own risk. All information and content found in this newsletter were created for educational purposes only. The newsletter is not intended as, or as a substitute for, professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in the newsletters. We encourage you to view our full disclaimer by visiting the eyeandear.org website.

The Hour of Inspiration and Hope by Lawton Snyder

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any of you have supported the Eye & Ear Foundation for several years with the hope that the research you are funding will lead to a new therapy or cure for such ailments as hearing loss, vision loss, tinnitus, or cancers of the head and neck. For many years, our Sight + Sound newsletter has served as our vehicle to share the inspiration and hope created by the research efforts. With the arrival COVID-19 keeping us all at home, we searched for better ways to stay in touch and created a webinar series called Sight + Sound Bites. These one hour, bi-weekly, webinars have provided another, possibly

better, way to feel the inspiration and hope we want to produce with the Sight + Sound newsletter. Participating in a webinar is as easy as clicking on a link, and you can learn about cutting edge research on track to improve care for patients, directly from the scientists and clinicians. Webinars alternate between Ophthalmology and Otolaryngology projects. If you have missed these webinars, please register at our website or send us your email to begin receiving webinar invitations as they are scheduled. In the meantime, you can view recordings of all of the webinars on our website eyeandear.org.

Lawton Snyder