CHAPTER
3 Keeping Promises
THE GOOD DOCTOR
THE TERM patient centered care can seem rhetorical without examples that bring it to life. That is why I usually begin my talks on this topic by showing an email from Merit Cudkowicz, MD, from Saturday afternoon, January 16, 2016.
Merit is the chief of neurology at Massachusetts General Hospital (MGH) and a leading expert on one of neurology’s most feared degenerative diseases—amyotrophic lateral sclerosis (ALS). That morning, I had written Merit on behalf of a friend of a friend—someone with newly diagnosed ALS. The patient had learned on the Internet about a promising new stem cell treatment that had been developed in Israel and was being tested in a few sites around the world, one of which was MGH.
He was desperate to see if he could get into the trial, trying everything he could think of. He contacted a mutual friend, Sven, who worked in healthcare, and asked if he knew someone, anyone, who could help. Sven contacted me, and I contacted Merit. Three hours later, Merit wrote back to Sven and me:
Dear Sven and Tom,
We recently completed enrollment in the US phase 2 trial of NurOwn (Brainstorm)—the same treatment reported by Hadassah. The study in Hadassah was the first study—phase 1—it was small, dose finding, uncontrolled. While I really hope they are right in their interpretation of the results, I think it isn’t yet so clear. The US study enrolled 48 participants, using the highest concentration of cells used in the Hadassah phase 1 trials. We should have results late spring, I hope.
There are a lot of other options now—the science in ALS has really taken off—thank goodness! And there are a lot of great ideas and targets. We would be available to talk to your friend—either in person or by phone—to go through some of these. If your friend agrees, please connect him directly with me and Katie (cc’d above), who is our research access nurse.
We are here to help your friend.
Merit
The title that I use on the slide showing this email is “What We Are After in Seven Words,” alluding to the last seven words of Merit’s message: “We are here to help your friend.” I say to clinicians in the audience that I know all of them are under duress, and many of them are skeptical that “patient experience” is important. But then I ask if anyone in the room doesn’t consider Merit’s closing phrase as core to their notions of excellence?
No one pushes back. Her email provides a reminder that, even when the chances are small that medicine can extend life or improve health, even when everything that can be done has been done, physicians still have important roles to play. In fact, everyone in healthcare whom I have met wants to convey Merit’s message, “We are here to help your friend.” And most agree that this message is most important when there is little that can be done to change a patient’s course.
ALS is the most common neurodegenerative disease affecting the motor neuron system. The onset typically occurs when people are in their forties and fifties and start to show signs of a gradual degeneration of motor neurons in the brain and spinal cord. They usually become totally paralyzed, and most die from respiratory complications within two to five years of diagnosis. There is no known cure for ALS, although a few medications slow progression in some patients and have been approved for use in this condition.
Three years after this email, research on ALS therapies is showing promise, and there is a real sense that the outlook in ALS may be about to change. The great excitement these days is about newer agents like NurOwn, which attack ALS in fundamentally new ways. This isn’t the first time in the past two decades that Merit and other ALS clinicians have been excited by research advances, but they were usually to be disappointed by further studies. You can see in her email her efforts to temper enthusiasm and keep hopes realistic. (“While I really hope they are right in their interpretation of the results, I think it isn’t yet so clear.”) But talk to Merit these days about what is happening in ALS, and you come away thinking, “This time, it might be different.”
What drew her to caring for patients with a condition for which other physicians have often said, “There is no hope”? When she hears that from patients, why does she immediately say, “That simply isn’t true”? How has she sustained her ability to convey messages like “We are here to help your friend”?
“She should be the most burned out physician on the planet,” one of her colleagues says. “But somehow, she is the least.”
* * *
Merit Cudkowicz’s parents and her older sister arrived in the United States in 1959, via a boat from Italy. Her father was a researcher in immunology, and the family had moved to Oak Ridge, Tennessee, where he would do postdoctoral research, and where they would have their other two children. First, there was a boy, and then Merit was born in 1963. (Merit’s last name is pronounced suh-KOH-vitch; her grandfather on her father’s side emigrated from Poland to Italy in the early 1900s.)
Merit’s parents planned to be in the United States only a year or two. They had both grown up in Milan, loved Italy, and fully expected to return. Merit’s mother didn’t speak English when they arrived in the United States. “It was quite a culture shock for them,” Merit says. “My mom likes to tell a story about how they tried to kick her out of a restaurant once. She was dressed in what was a fancy Italian style, and they thought she might be a prostitute or something.”
By the time Merit was two, her parents had decided to stay in the United States, and Merit’s father found an academic position at the University of Buffalo, pursuing immunology research on natural killer cells and bone marrow transplants. Buffalo is where Merit and her siblings spent most of their childhoods.
When she graduated from Amherst Central High School in 1981, her yearbook entry said that she wanted to be a neurologist. She has no memory of why she thought or wrote that, but she was definitely interested in science and recalls a heavy emphasis on academics in her household. “My parents did not let us go into sports, and strongly discouraged us from even being athletic,” she recalls. “I only joined my first sports team in the spring of 2018. I’m part of a soccer league here in Boston and got my first jersey ever. My mom lived nearby, and I went over to show it to her.”
Merit was accepted via early decision to MIT and headed to Cambridge, Massachusetts, intending to become a nuclear engineer. It was 1981, a period when worldwide oil shortages were causing long lines at gas stations. “Everybody was thinking about how to make new energy,” she says. “I was excited about that.”
But when she took the entry class for nuclear engineering, she was the only woman in the room. The subject matter also did not click for her. “It didn’t grab me,” she says. “I moved toward chemical engineering, and I loved it. The material I liked was what is known as biomedical engineering today, and I met a lot of people who were interested in biology and medicine. It was a common major for students who would go on to medical school. But I wasn’t thinking medicine. I was thinking research. I always thought that, like my father, I would be in the lab full time.”
Merit soon felt she had come to the right place and not just because of classroom experiences. “I loved MIT,” Merit says. “It was hard—much harder than medical school. But it was fun, and people were really into what they were doing.”
She remembers how, early on, all the freshmen lined up to meet the president of MIT. To pass the time as they waited, many of the students were playing with Rubik’s cubes, the three-dimensional puzzles. Merit had never seen one before, but immediately rose to the challenge. “You had to solve the Rubik’s cube to have street cred,” she says. She wasn’t one of those geniuses who solved it in 30 seconds; it took her a couple of months, but she got it done. (NB: It took Ernõ Rubik, the inventor of the puzzle, over a month the first time he solved it.)
* * *
As exhilarating as that first year at MIT was, it turned tragic toward the end with the death of her father. He had developed stomach cancer. Merit learned of his diagnosis very late in his course and in an unusual way—from her French teacher at MIT.
“There is this very Italian thing—trying to hide what’s going on from your kids. He didn’t want our studies to be interrupted,” she says. Her parents had called the school to ask them to keep an eye on her during the difficult times that lay ahead, and one of her teachers decided to let her know that something was going on. Decades later, that experience would be one reason she and her colleagues at MGH started a “parenting program” for ALS patients, in which a noted child psychiatrist, Paula Rauch, helps parents talk to their children about ALS.
* * *
There was no single moment that led Merit to decide that she would go to medical school rather than pursue a PhD in laboratory science. As an undergraduate, her goal was research, and she was driven by a vague, idealistic notion that she would be happy as long as she was able to contribute knowledge that would do good. She was no longer trying to be a nuclear engineer and solve the energy crisis, but was increasingly oriented toward biological science.
Sometime during her sophomore and junior years at MIT, she began to get advice that going to medical school and getting an MD would provide more flexibility than going for a PhD, and that she would have more opportunities and options for how she pursued research. Her advisor at MIT was Robert Langer. As she puts it, “That was before he was super famous, back when he was just a little famous.” Langer was well on the way to becoming arguably the most influential biotechnology researcher in the world, making major advances in drug delivery systems and tissue engineering. Excited by the work of Langer and other biomedical engineers, Merit applied for a program that would allow her to go to Harvard Medical School and continue studies and research at MIT (the Harvard–MIT Program in Health Sciences and Technology, or HST).
She got off to an inauspicious start—failing her very first examination at medical school, an anatomy test. “It was probably the best possible time to fail—at the beginning,” she says. “At MIT, every test was open book. I never had to memorize a thing. It was really about problem solving and thinking. I had to adjust to the fact that in medicine there is a lot of information that you do have to absorb and retain.”
Merit lagged behind in adjusting to the medical school culture in other ways. “In retrospect, one problem was that I didn’t live on campus,” she says. “I loved being at MIT so much that I continued living in Cambridge, instead of with the other medical students on the Boston side of the river. I didn’t realize how competitive medical school was. Even during hurricanes and storms, people would go into the anatomy lab and study. The result was that I just wasn’t prepared.”
One of the key ingredients of grit, as I mentioned earlier, is a resilience mindset; gritty people learn from setbacks, and that is what Merit did. She sat down with the professor who led the anatomy course, discussed what had happened and how she could do better, and she quickly turned her performance around.
A year later, she was in love—with neuroscience. “It was taught by Mike Moskowitz,” she recalls, referring to the MGH neurologist/stroke researcher. “It was really, really fun. And there was this excitement building about the brain, and where it was going, and the potential for big things happening.”
That sense that big things were about to happen in neurology was something new. During the previous few decades, research had led to advances in treatment of cardiovascular disease (coronary artery bypass graft surgery, coronary angioplasty, and cholesterol lowering drugs) and cancer (chemotherapy, bone marrow transplants). In these areas, incurable diseases had become treatable, and sometimes curable.
In neurosciences, too, research was advancing knowledge, but those advances had not yet led to treatments that could significantly extend life or improve health for patients with strokes, brain tumors, or degenerative conditions like ALS. One joke often told by non-neurologists was “What is the title of the shortest book in the world?” The answer was Neurological Therapeutics. The implication was that there was little one could actually do to treat neurological conditions.
Neurologists were not amused by that joke, of course, and told the physicians making that joke that they were dead wrong (at least, that is what they said to me when I would make that joke). Researchers were getting a deeper and deeper understanding of the physiology (how things worked) and pathophysiology (what was happening when things broke down) of the nervous system. And the ability to study DNA was opening an exciting new door, allowing researchers to define the genetic bases of degenerative diseases like Alzheimer’s disease, Huntington’s disease, and ALS.
Progress against these conditions made neuroscience seem like a wide-open field. Merit thought, “I want to be part of this.”
* * *
What she had not anticipated was that she was going to love patient care. When she got to her third year of medical school, she started her rotations through the various disciplines of medicine. Many researchers viewed clinical training as a distraction from the work that really mattered, which was laboratory research. “But I really liked seeing patients,” she says. “I liked sharing their stories and doing things that helped them.”
As much as she enjoyed her first real experiences in patient care, she did have some problems adjusting to hospital life. Merit was still living in Cambridge, in a rent-controlled apartment halfway between MIT and Harvard Square, and most of her rotations were across the Charles River, at MGH. “On my surgery rotation, I had to be at the hospital to start rounding on patients at 5 a.m.,” she recalls. “I missed a few rounds because it was so early, so I used to have my mom wake me up. She was very loyal, and she would call me on the telephone to make sure I was up in time.”
Merit did neurology as a “core clerkship” during her third year at MGH, and then as an advanced elective during her fourth year at Brigham and Women’s Hospital. “It felt like I was going back to problem-solving,” she says. “It was about trying to figure out where the lesion is and what’s going on with the patient. The teachers were these giants of neurology, like C. Miller Fisher and Raymond Adams. They spent a lot of time thinking about each individual patient, and I liked that part.”
Merit decided that neurology was for her, but she was still thinking that she would become a laboratory-based scientist—mainly because that was what she had been immersed in throughout her education. At that point, she didn’t know anything about clinical research—conducting trials with patients to determine what treatments might help them. She took an extra year during medical school, going into the laboratory to study Huntington’s disease—a rare but terrible inherited disorder that results in progressive degeneration of brain cells and is perhaps best known for claiming the life of folk singer Woody Guthrie. She spent that year slicing brains, looking for different protein aggregations that might help unravel the basic biology of the disease.
* * *
Merit arrived in neurology at an exciting moment. In the early 1990s it seemed like every year there was a discovery of a genetic mutation behind a major neurological disease, like Alzheimer’s or Huntington’s. The same was occurring in other fields, for diseases like cystic fibrosis and many cancers.
“There was this buzz in neurology that therapeutics were just around the corner,” she says. “That is what got me excited about neuro-degeneration—the chance that we might finally be able to do something for these terrible conditions. Naïve or not, we thought there was finally something to hang our hats on.
“I really wanted to be a neuro-degeneration person rather than someone focusing specifically on ALS,” she says. “I was excited about all those areas—a lot of the genes had been discovered by researchers at MGH, so we were talking about these diseases all the time. MGH had just started a fellowship focusing on neurodegenerative disorders, and I started seeing patients with all those conditions.”
Merit found that, as a doctor, she had the right personality for taking care of patients who—all too often—had a steady downward course. “I always liked chronic conditions,” she says. “I did not want to run a code. I was more into seeing people as outpatients, thinking about them, and making long-term plans.
“And I fell in love with ALS patients,” she says. “That is what caused me to steer more in that direction rather than toward the other diseases.”
* * *
It was one patient in particular who caused Merit to make ALS the dominant focus of her work—and they met because of research underway at MGH. A major genetic breakthrough occurred in 1993, while Merit was working as chief resident in neurology at MGH. An MGH neurologist, Robert (“Bob”) Brown, led an international team that discovered the first ALS-associated gene. They found that a mutation in a gene called SOD1 was present in 10 to 20 percent of patients with the inherited forms of ALS (which account for about 10 percent of ALS cases), and MGH soon began trying SOD1 infusions into the cerebral spinal fluid bathing the brain and spinal cord in the hope that it might arrest the disease.
In 1995, Merit became involved—deeply involved—in the care of a family in which three of five adult siblings had developed ALS symptoms around the same time. They had inherited the SOD1 mutation from their mother, who had already died from ALS. They had come to MGH because they wanted to participate in research trials. They knew that experimental treatments like SOD1 infusions might not help them (and, as it turned out, they did not have any impact). But they understood that research was essential if anything was to help the next generation of ALS patients, which could very well include their own children.
Merit started spending a lot of time with the three, all of whom were elementary and middle school teachers who lived in Connecticut. She really liked them and admired their courage, dignity, and generosity. As they got sicker, it was harder and harder for them to come to Boston, and Merit didn’t want to just take phone reports on how they were doing. “I wanted to see them,” she says. “So I started driving there to give them care in their homes. That was how I started to learn about what life was really like with ALS.”
The particular genetic mutation that these siblings had inherited had a 100 percent penetration rate—that is, every person who inherits the mutation gets the disease. And with this mutation, the downhill course is rapid—it’s terminal in about nine months unless the patient is placed on a ventilator. One of the three, Susan, chose to go on a ventilator; she had a young son who was just eight years old and wanted to be there for him as long as possible.
Susan was in her early forties, about a decade older than Merit at that point, and she had a powerful effect on the young neurologist. Merit was just about to get married to a mathematician named Eugene Sorets, whom she had met seven years before in Buffalo. Their family life was about to begin. They would have a son in 1996 and a daughter in 1998.
“Susan really wanted to live for her son and her husband, who was a fabulous man who was in the military. They were very much in love,” Merit recalls. “She just felt that Bob Brown and I could solve this ALS thing eventually. She said she wanted to be able to go in peace knowing that, by the time her son was of the age that he might be at risk, we would have a treatment for it. It wasn’t just for her son, but also her nieces, nephews, and all the people with ALS.
“So she asked me something point blank. She asked me to promise her that I wouldn’t abandon ALS,” Merit says. “She said I had to promise to stay in it. By then, I was fully hooked, so I said yes, of course.”
* * *
Merit kept her promise. Bob Brown was leading the ALS center at MGH, which included a couple of other physicians besides Merit and a nurse. Merit became the co-director of the ALS Center in 1998, and the director in 2008 when Brown left MGH for the University of Massachusetts. In 2018, the center was renamed the Sean M. Healey & AMG Center for ALS at Mass General after a major donation from and in honor of the business leader who had recently been diagnosed with ALS and had become Merit’s patient.
By this point, the center had grown to include more than 100 faculty and staff, including eight neurologists, several nurse practitioners, physical therapists, speech therapists, a chaplain, and a social worker, as well as researchers. It had become the world’s largest hospital-based research program for the disease; patients knew that they would get compassionate and excellent care, and the chance to participate in research trials with the latest treatments.
Insurance reimburses only a fraction of the care patients receive at the center; the rest is covered by MGH and philanthropy. The donation made in Healey’s honor is expected to be a game-changer, allowing expansion of research and improvement of the care received by ALS patients.
The care at the center shows what is possible when clinicians focus on their patients’ needs, even when those patients have little chance of recovering their health.
“The clinic model has changed a lot and, actually, I’m super proud of it,” Merit says. “We hear from our patients what their needs are. We started a house-call program—first just adding home visits on the edges of our day, but then realizing that we needed a fully staffed program. Today, we take care of about 100 patients at home. We try to do that in between their visits to the office, so that instead of being seen every three months, they are seen every six weeks. We started this based on feedback from patients. They said that they felt like they would come to clinic, we would tell them all this stuff, and then we wouldn’t see them for three months, during which lots was happening that we might have been able to do something about.”
The center provides care for about 500 patients with ALS. Routine visits last two to three hours, during which patients have access to neurologists, a palliative care physician, a pulmonary specialist, nurses, and a respiratory therapist, speech therapist, physical therapist, and social worker. “The social worker was added because patients said they were just inundated by insurance and other issues that they needed help with,” Merit says. “It’s not a counseling social worker; it’s more of a resource role.
“It’s a real team approach,” she says. “Patients don’t see everyone on every visit, but they see who they need to see based on their symptoms. They know that they can reach any of them at any time. And there is always somebody on hand 24/7 to answer the phone when they call.”
Merit and her colleagues are doing more and more virtual medicine. “I’m a huge fan of tele-visits,” she says. “I don’t have to examine the patient that much after they are diagnosed. If I have to examine them, we can get them in. But by the time they get dressed, come to MGH, and park, they are exhausted. The tele-visits are a way to see them in their home and cover most of the same things that we would talk about in person.
“We like to give patients a choice,” she says. “We ask them whether they want to do a tele-visit, or a house visit, or come in person. People do a mixture, depending on where they live and where they are in their illness.”
One of the newer members of the team is a psychiatrist, Paula Rauch, who focuses upon helping patients talk to their children about their condition. “Most of our patients are in their forties or fifties, and they have young kids,” Merit says. Recalling how late in her father’s illness she learned how sick he was, she is attuned to the difficulty of these family issues, and frequently says, “We take care of 500 families”—as opposed to 500 patients.
“The patients and their spouses often ask us, ‘When do we tell our kids? How do we tell our kids?’ None of us have any training in that,” Merit says. “Paula is a psychiatrist who has been actively doing this with cancer patients. She’s not coming here to be the psychiatrist for our patients. It’s really about helping them know what their kids are ready for and how to listen to their kids, and how to respond when the kids offer some opening. It’s very individualized. I don’t know that we can learn to do what she does, but at least it gives us some tools to help.”
* * *
Clinic day, when most of the return visits are scheduled, is Tuesday. New patients come on Monday or Friday, because Merit and her colleagues realize that it is devastating for someone with newly diagnosed ALS to see a waiting room filled with patients with ALS across the range of disability caused by the disease. Regardless of how thoughtful the scheduling is, the experience is hard on patients, and it’s hard on staff, too.
Merit gets angry when she hears that patients have been told there is nothing that can be done. “That’s devastating, and it sucks the air out of them—and it’s just not true,” she says. “There are actually four drugs approved somewhere in the world for people with ALS, and there are maybe 20 trials, and there’s a big pipeline. I tell them that there are actually thousands of people working on ALS right now, and that our job not only is to take really good care of them day-to-day, but make sure that they know about trials so they can make their choices.
“That’s the other thing about our center. We want people to know that they have options. We never do a trial that we don’t think has a good scientific rationale. They’re all good options, decent options.
“Even if our trials don’t work, we’re still doing things for people with the care we give,” she continues. “I’ve had lots of trials that have not worked, and it’s devastating for everybody involved. But it’s always the patients who keep our spirits up. I have a couple of quotes I keep from my patients, ‘Thanks for trying. Don’t give up. What’s the next trial I can be part of?’
“If they can keep up, we can keep up somehow.”
* * *
Despite the hope that research creates, burnout is an issue at the center. “It’s a bigger problem for our nurses, because they have a different relationship with the patients,” Merit says. “We often see patients back-to-back—first the doctor, like me, and then one of our nurses—and we hear completely different stories. When I am seeing the patient, they want to hear all about the research, what trial they can be on. The focus is on the hope. When they see the nurse, they’ll tell them all the stuff that’s going on in the house and all their fears. By the end of the clinic, the nurses are actually pretty wiped out and devastated.
“It’s not that we physicians don’t care,” Merit continues. “It’s just that we’re not hearing the same level of emotion. When someone tells me something really intimate, I feel privileged to have won that patient’s confidence. The best compliment I ever got from a patient was that I had a heart of a nurse. She was a nurse herself.
“I think if I was not engaging them in research but only seeing patients and focusing solely on the reality of what was happening to them and their families, I could see getting burned out.”
That’s why every Tuesday after clinic, members of the ALS team walk out of MGH and meet in a nearby restaurant for a bite or a drink and conversation before going home. “Maybe five or six of us go out each time,” Merit says. “The group varies, but everyone knows they can come if they want. The idea is just to unwind. Sometimes we see 40 or 50 people in a day. They see different doctors, but the rest of the team is seeing everybody who needs them. The nurses and speech therapists might see 20 or 30 people.
“It can be emotionally hard. It is emotionally hard. We don’t talk about the patients. We just unwind.”
* * *
There was a time when Merit herself felt a bit burned out. Back around 2012, she had three studies going and was convinced that all three would work. There were two large late-stage trials for treatments of sporadic (noninherited) ALS, and a promising new approach to the SOD1 mutation—the one that had caused the death of Susan, her siblings, and her mother. The first two trials were negative, and the third treatment was stopped when it was found to cause toxicity in animals.
“I actually started to lose a little hope here,” she recalls. It was around that time that she was invited to become chair of the department of neurology at MGH—a huge honor, but one that came with a lot of management responsibility.
“So I did step back a little from ALS—not from taking care of patients, but a little from day-to-day research,” she says. “I spent more time mentoring others to lead the trials. I also wanted to get some perspective and think about what we needed to do to have research trials that were less likely to fail. In other words, fewer trials but with better chances.”
* * *
Today, Merit and her husband live in the same house that they bought when Merit was a neurology fellow back in the 1990s and where they raised their two children. Her husband, Eugene (“He’s awesome.”), works in finance. Her son is a senior at Cornell, majoring in biomedical engineering and having the opposite of his mother’s initial college experience—he is one of the only men (30 of 35 students are women). He intends to go to graduate school and is interested in drug development and delivery—the kind of work that made Merit’s undergraduate advisor, Robert Langer, famous. Their daughter is at Brown, studying neuroscience and planning on going to medical school.
And Merit didn’t stay out of the mix for long. (“Now, I’m back!” she says.) Research advances have a way of snowballing. Scientists learn from failures and try new things. Suddenly, it seems like there are multiple promising agents for ALS—but this development only seems sudden to those observing from a distance. To Merit and other ALS clinicians and their patients, it seems like maybe, just maybe, an effective therapy will come just in time. She was a magnet for patients and a magnet for companies with new treatments to try, so once again, she is at the shared front line of patient care and research.
“It feels like change is in the air,” she says. “There are so many people now studying this illness and so many new ideas. It feels like it’s around the corner. Our job is to keep people as healthy as possible while these treatments are being developed.”
Merit spends more than half her time in care or research for people with ALS. Remember the SOD1 mutation that Susan and her siblings had? Recalling the promise that she made to Susan in 1995, she says, “I’m excited to say that I really believe that I can keep that promise now. We are at the stage where we can give treatments to people that silence the genes like the one Susan had—and, in fact, we are doing those trials now.”
At one time, ALS experts thought the problem was a loss of function of the gene, and tried infusing SOD1. That didn’t work. “It became obvious that there was some toxic function caused by the mutation,” Merit says. “If we could lower the amount of SOD1, at least in animal models, that could be curative. We needed to get to the point where we could unravel this, and we didn’t get there until 2010.”
A different treatment approach (called an antisense oligonucleotide treatment) was now possible. Merit designed a clinical trial, and when the trial was launched, she invited Susan’s husband, whom she had kept in touch with. He was by then a colonel; Susan’s son is in the military as well.
“He launched our investigator meeting,” Merit says. “It was just incredibly powerful having him talk about the illness and its impact.”
That trial showed that the antisense oligonucleotide seemed to be safe in humans, but in the meantime, some evidence of toxicity had emerged in monkeys and rats. (This was one of the three big disappointments for Merit in 2012.) So researchers went to work to redesign the treatment. It has taken four years, and the initial trial data with the newer agent are just becoming available.
“It takes persistence to do this kind of work,” she says. “It’s a long haul.”
Despite the risk for burnout, the ALS team at the Healey Center has been amazingly stable, with little turnover. “Most people never leave ALS once they come into the field,” Merit says. “We all share the same passion and drive. So our team has been together more than a decade, and we know each other as friends and colleagues.”
She remains realistic but upbeat. “I really do love everything I do, and I believe that we can make a difference and defeat this illness,” she says. “I’ve never been one to give up. Yes, it’s a sad disease. There are days when I truly hate ALS. But I love my patients, and I love what we’re doing. I feel that we are going to make a difference, and that sustains me and all our team.”