Patient Stories | Mount Sinai Today

Panel on Palliative Care Shines a Light on Caregivers

Nov 19, 2018 | Community, Featured, Patient Stories

From left: R. Sean Morrison, MD, moderator of the “Partners in Care” event, with panelists Elizabeth Gilbert; Jennifer Homans, PhD; Cardinale Smith, MD; and Michael Ausiello—who each cared for a seriously ill loved one.

They spend an average of 20 hours a week in an unpaid, emotionally draining job. One in three is in poor health, and 97 percent say they need more help. Who are they? They are the 65 million Americans who provide care to an adult relative at home, and a panel discussion called “Partners in Care” was held on Monday, November 5, to shine a light on their experience.

“When we think about health policy, when we think about medical coverage, we always think about the patient who is living with serious illness, and we forget their caregivers. They need help, as well,” said the moderator of the panel, R. Sean Morrison, MD, the Ellen and Howard C. Katz Chair of the Brookdale Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai.

The panel was held at the Lotos Club in Manhattan, one of the nation’s oldest literary clubs, and it consisted of three noted authors who had each cared for a seriously ill spouse or partner: Elizabeth Gilbert (author of Eat, Pray, Love); Michael Ausiello (author of Spoiler Alert: The Hero Dies); and Jennifer Homans, PhD (author of Apollo’s Angels: A History of Ballet); along with Cardinale Smith, MD, Associate Professor of Medicine (Hematology and Medical Oncology), and Geriatrics and Palliative Medicine, who cared for her father when he was dying of cancer. The event was sponsored by longtime Mount Sinai donors Margery and Stephen Riker.

Ms. Gilbert told the story of caring for her partner, Rayya Elias: “This was an incredibly powerful person, even though she was 87 pounds,” who decided to move out of hospice to live near friends in Detroit just months before she died in January 2018 of pancreatic cancer. Ms. Gilbert called her years as a caregiver “the most brutal, beautiful experience of my life.”

Dr. Homans spoke of trying to write a book, raise her children, and care for her husband, who was living with amyotrophic lateral sclerosis (ALS). “Palliative care meant introducing someone else who could stand with us among all those whirling parts—this third person who was calm and knowledgeable and could steady the ship for a moment.”

Palliative care focuses on treating the symptoms, pain, and stress of a serious illness for patients and their families. It is appropriate at any age and at any stage in a serious illness, and unlike hospice, it can be provided alongside curative and all other appropriate medical treatments. “It truly is whole-patient care, and we offer the same support for loved ones,” Dr. Smith said.

The nation is headed for a shortage of caregivers, Dr. Morrison said, adding that “2030 is an important number in health care.” That is the year when, for the first time in history, there will be more people in the world who are 65 and older than people who are under 21. Increased public awareness and health policy reform will help alleviate the caregiver shortage and burden, he said. The Brookdale Department, which hosted the “Partners in Care” event, strives to advance this conversation, and to support seriously ill people and their caregivers through multifaceted work, from clinical care, to training doctors, to pursuing research.

“There is no coverage for caregivers in our nation’s health system, and that is fixable,” Dr. Morrison told the audience. “That means asking your local representative to make it an important policy issue. Become involved in one of your palliative care organizations, become a voice, and become active.”

Patient Reimagines Her Surgery as Art

Nov 19, 2018 | Community, Patient Stories

Artist Frances McGuire transformed the arduous experience of multiple knee surgeries into creative inspiration by sketching serious, and sometimes whimsical, images of the experience.

Now, the lively prints are on display at the Orthopedic Center and the surgery waiting room at Mount Sinai West, thanks to Michael J. Bronson, MD, Chair of Orthopedics at Mount Sinai West and Mount Sinai St. Luke’s, who performed each of Ms. McGuire’s surgeries, and Evan L. Flatow, MD, President, Mount Sinai West.

Ms. McGuire created the sketches during a months-long recovery in which she was unable to paint in her studio. Each piece was crafted using a drawing app on her iPad. “It was extremely therapeutic,” Ms. McGuire says of making her sketches. “I loved the energy of doing them, and I love sharing them.”

“Fabulous and Fighting” Brings Fashion to Cancer Patients

Nov 19, 2018 | Community, Patient Stories

Executive Director, Bethany Heinrich, left, with Sandy Lansinger, Patient Navigator at The Blavatnik Family – Chelsea Medical Center at Mount Sinai.

Patient Inez West models her selections from Fabulous and Fighting

More than 30 patients from the Women’s Cancer Program at The Blavatnik Family – Chelsea Medical Center at Mount Sinai attended a designer clothing “pop-up shop” on Friday, October 12, sponsored by the nonprofit group Fabulous and Fighting.

At the event, each woman picked out two free items of clothing donated by fashion houses in the New York City area and received free books and journals on breast cancer.

Fabulous and Fighting was created after Bethany Heinrich, Executive Director and Co-Founder, helped her mother navigate cancer treatments and noted that as patients’ weight fluctuated, they had trouble affording new, fashionable clothes that fit.

The nonprofit aims to empower women and boost their confidence as they face the challenges of cancer.

Walking Tall After a Paralyzing Car Accident

Oct 22, 2018 | Featured, Patient Stories

Peter Schreiner, walking to the finish line, with Eberardo Burgos, left, and Michael Elliott, both assistant trainers at the James J. Peters VA Medical Center. Click here to watch the Mount Sinai Future You video.

For months, New York City resident Peter Schreiner trained extensively for the New Balance 5th Avenue Mile, determined to win. With friends, family, and new fans cheering him on, he triumphantly crossed the finish line, first among his co-competitors.

But this was no ordinary race: Mr. Schreiner is paralyzed below the chest, and he accomplished this feat in 44:19 minutes—nearly four minutes faster than the goal he had set for himself—with the help of an exoskeleton, a robotic device that enables him to stand and walk. The event, held on Sunday, September 9, marked the first time that an entire heat was dedicated to paralyzed athletes using exoskeletons.

In September 2017, the 27-year-old former scuba instructor from the Upper East Side fractured his T5 vertebra in a car accident that occurred while he was coming home from a friend’s funeral in Florida, sustaining a spinal cord injury (SCI). He had no sensation or motor function below his upper chest, and until he came to The Mount Sinai Hospital five weeks after the injury to begin a comprehensive multidisciplinary SCI rehabilitation program, he was unable to sit up, talk, eat by mouth, or even drink water.

After the race, Peter Schreiner got a congratulatory hug from his mother, Mary Kate Wold.

His treatment involved rehabilitation nursing, physical therapy—including locomotor training with the exoskeleton—occupational, speech, respiratory, and recreation therapy, counseling, nutrition, and community reintegration. “At the time, this seemed so permanent,” recalls Mr. Schreiner.

“It has been amazing to see Peter’s progress,” says Thomas N. Bryce, MD, Professor of Rehabilitation and Human Performance, and Medical Director of Mount Sinai’s Spinal Cord Injury Program. “When he was an inpatient here, we tried to get him up to use the exoskeleton, and it was very slow. He needed a lot of assistance, but very soon he was racing around here very quickly.”

Finishing the race right behind Mr. Schreiner were two other Mount Sinai patients, Richard “Woody” Woods and Robert Woo, and Heather Miner (U.S. Navy Ret.), a patient at the Veterans Administration (VA) Medical Center in Dallas. All four—in T-shirts identifying them as “Team Bionic Athletes”—wore an exoskeleton device placed on their legs, hips, and torso, and weighing 50 pounds, a weight not felt by the user wearing it.

Among its many components, the powered exoskeleton has motors at the hips and knees, a tilt sensor for detecting body position, a computer in the pelvic band to control the motors, and two batteries, all of which are brought together to provide coordinated leg movement into a somewhat natural gait. Arm crutches help users maintain their balance.

“When you’re sitting in a wheelchair, you are literally looking up at the world, and the world is literally looking down at you,” says Angela Riccobono, PhD, Senior Clinical Psychologist, Rehabilitation and Human Performance, who was part of Mr. Schreiner’s care team. “I cannot overstate the significance of being able to stand up and look at someone eye to eye. It is beyond powerful.”

Ann M. Spungen, EdD, Vice Chair of Research for the Department of Rehabilitation and Human Performance at the Icahn School of Medicine at Mount Sinai, is one of the nation’s top exoskeleton researchers for patients with disabilities caused by SCI. Dr. Spungen is also the Associate Director of the VA Rehabilitation Research & Development (RR&D) National Center for the Medical Consequences of Spinal Cord Injury at the James J. Peters VA Medical Center in the Bronx—with which Mount Sinai has an affiliation.

Dr. Spungen has been studying many aspects of SCI, including paralysis, medical complications, mobility, and quality of life for nearly three decades. In addition to lack of mobility, paralysis causes adverse body composition changes, bowel and bladder dysfunction, and cardiovascular problems. Her research has shown that four to six hours per week of exoskeleton-assisted walking leads to improved bowel and bladder function, reduced fat mass, less fatigue, improved sleep and mood, better pain management, and improved overall well-being.

Before the race, Pierre Asselin, MS, Senior Biomedical Engineer, James J. Peters VA Medical Center, and Assistant Clinical Professor, Rehabilitation and Human Performance, Icahn School of Medicine at Mount Sinai, ensured the exoskeleton device was a proper fit for Peter Schreiner.

Mount Sinai’s Abilities Research Center is expanding the outpatient exoskeleton program, focusing on technologies such as neuromodulation, upper extremity robotics, and lower extremity robotics. This initiative will be overseen by Maria del Mar Cortes, MD, Assistant Professor of Rehabilitation and Human Performance, who specializes in robotic technology and noninvasive brain and spinal stimulation techniques to understand the mechanisms of motor dysfunction and improve motor control. Her team will collaborate closely with Dr. Spungen’s program at the VA Medical Center.

Mr. Schreiner recently completed a Department of Defense-sponsored clinical trial at the VA Medical Center in which he participated in exoskeletal-assisted walking three times a week to determine the effects of exoskeletal use in those with SCI. Says Mr. Schreiner: “Mentally, just being on my feet and moving my legs makes me feel whole again.”

For someone who achieved—and surpassed—one early and significant milestone of competing in the race, Mr. Schreiner continues to set new expectations. “I believe I will be doing all the things that I want to do completely independently, and I am very excited about that,” he says. “Even though I have had setbacks, I am not giving up hope.”

Lab Discovery Leads to a Remedy

Oct 8, 2018 | Featured, Patient Stories, Research

Stuart Sealfon, MD

A drug that recently received approval from the U.S. Food and Drug Administration (FDA) for the treatment of pain associated with the gynecological disorder endometriosis had its genesis two decades ago in the laboratory of Stuart Sealfon, MD, at the Icahn School of Medicine at Mount Sinai.

The drug, Orilissa™, approved by the FDA in July, is the first oral regimen that specifically helps to ease the moderate to severe pain that accompanies endometriosis, a condition where the tissue that forms in the lining of the uterus continues to grow outside the uterus.

The disorder, which affects roughly one in ten women of reproductive age, negatively impacts quality of life, since the excess tissue growth is often accompanied by pain during menstruation, intercourse, or urination.

“Orilissa is a drug that resulted from the basic research we conducted at Mount Sinai, and it will help millions of women,” says Dr. Sealfon, Sarah B. and Seth M. Glickenhaus Professor and Chair Emeritus of the Department of Neurology. “At Mount Sinai, we discovered how to clone the drug target that was needed to develop this new drug.”

Indeed, as a young researcher more than two decades ago, Dr. Sealfon led the Mount Sinai team that cloned the gonadotropin-releasing hormone receptor (GnRHR) and genetically engineered host cells that express GnRHR. Gonadotropin-releasing hormone (GnRH), which is secreted by the hypothalamus, plays a key role in controlling reproduction, and acts via its receptor GnRHR.

The cloning procedure and primary structure of the receptor were described in two studies authored by Dr. Sealfon in 1992 and 1993, which were published in Molecular Endocrinology and Molecular and Cellular Endocrinology, respectively. The research provided a better understanding of the complex interplay of hypothalamic, pituitary, and gonadal hormones, which underlie pharmacotherapy and the reproductive system.

At the time, Dr. Sealfon says, a career-development grant provided him with the funding he needed to conduct his research. Two U.S. patents, in 1998 and 1999, assigned these inventions to Mount Sinai.

The oral application of Orilissa—also known by its generic name, elagolix—enables women to dial down the reproductive system. The dose-dependent drug suppresses the luteinizing hormone and the follicle-stimulating hormone, which leads to decreased blood concentrations of estradiol and progesterone. This reduces the growth of excess tissue, or lesions that form on the ovaries, fallopian tubes, or areas near the uterus, including the bowel and bladder that characterize endometriosis and cause pain.

The 20 years it took for elagolix to move from Dr. Sealfon’s laboratory to the marketplace demonstrates the length of time it can take for basic scientific discoveries to bear fruit, experts say. The drug was released by AbbVie, a global pharmaceutical company, in cooperation with Neurocrine Biosciences, Inc.

Endometriosis is considered one of the most common gynecologic disorders in the United States, but women can sometimes go years before having the laparoscopic procedure needed to render a proper diagnosis. In addition to the use of oral contraceptives, treatments have included nonsteroidal anti-inflammatory drugs, and opioids. In more extensive cases, women may undergo surgical procedures, including a hysterectomy.

In two Phase 3 clinical trials, Orilissa has been shown to be helpful in the treatment of uterine fibroids, as well. Fibroids are a common benign tumor that causes bleeding or pain in millions of women, and for which there are, currently, limited nonsurgical treatment options.

In the years since his initial discovery, Dr. Sealfon’s lab has continued to study GnRH receptor-mediated gonadotropin regulation and help guide future work in the field.

Mount Sinai Receives Award from VNSNY CHOICE SelectHealth

Oct 8, 2018 | Featured, Patient Stories

From left: Matthew Baney with Michael Mullen, MD, Director, Institute for Advanced Medicine, Mount Sinai Health System; Thomas Dwyer, Senior Vice President, Visiting Nurse Service of New York; and Edward Lucy, Chief Administrative and Contracting Officer, Mount Sinai Health System.

VNSNY CHOICE SelectHealth, a New York State Department of Health Special Needs Plan for Medicaid-eligible New Yorkers living with HIV, recently awarded the Mount Sinai Health System $360,000 for its efforts at successfully improving the overall health status of its members.

Mount Sinai’s Institute for Advanced Medicine, which directs all of the Mount Sinai Health System’s HIV prevention and treatment programs, serves more than 1,100 HIV-positive VNSNY CHOICE SelectHealth members annually. The award will be used to support Mount Sinai’s quality initiatives that serve this population.

“VNSNY CHOICE SelectHealth shares with our Mount Sinai provider partners the conviction that HIV infection is now a readily treatable condition from which no New Yorker needs to suffer or die,” says Jay Dobkin, MD, Medical Director for VNSNY CHOICE SelectHealth. “We are gratified that our efforts in support of the Mount Sinai program have been so successful, and hope to build even more effective collaborations in the future.”

Matthew Baney, Senior Director of the Institute for Advanced Medicine, says, “We have been successful in starting and maintaining our patients on medications to keep them healthier. All of our sites have initiated outreach efforts and care coordination activities directed at finding patients who fall out of care and getting them back into treatment. We also have a fair amount of patients in the Mount Sinai Health Home Program, which is a free service that integrates and coordinates health care for people on Medicaid—and that has a significant impact on suppression rates.”

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