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Saint Louis University ALS Center of Excellence

Many remember the ice bucket challenge that went viral in the summer of 2014. While the fundraiser gained fame for its ingenuity and longevity, more importantly, it brought significant attention and critical funding to a devastating, fatal disease: amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s Disease. People with ALS lose their ability to walk, talk, eat, and—eventually—breathe. As of now, there is no way to halt the progression of the disease, but with some of the world’s most brilliant minds working to find a cure, we are closer than ever.

On the Precipice of a Cure; In the Meantime—Hope

A Unique Disease

ALS is a progressive neuromuscular disease that attacks nerve cells in the brain and the spinal cord. ALS impacts a person’s ability to use their muscles, restricting the movement of the limbs and body, including the muscles required for speech, swallowing, and breathing. The disease is progressive, and symptoms get worse over time. 

Ghazala Hayat, M.D.
Ghazala Hayat, M.D.  Director of the SLUCare ALS Clinic

According to the ALS Association, every 90 minutes, someone is diagnosed with the disease, and someone passes away from it. It affects as many as 30,000 in the United States, with 5,000 new cases diagnosed each year. The disease is terminal. “For the majority of people, from the onset of symptoms, survival is about 30 to 36 months,” says Dr. Ghazala Hayat, director of the SLUCare ALS Clinic at Saint Louis University.

Unlike a viral infection or a bacterial infection, which presents itself essentially the same way each time, ALS has different abnormalities. “ALS is a unique disease,” says the SLUCare ALS Clinic’s Dr. Jafar Kafaie. “In fact, it is more likely a syndrome. The mechanisms or the genes involved work in different ways, which are sometimes not closely related to each other. However, the outcome and end product of these mutations is a motor neuron disease. As we learned more, we realized that it is not only motor neuron disease; it involves a lot of parts of the brain.” 

Dr. Jafar Kafaie
Jafar Kafaie, M.D.

In addition to the physical degeneration that occurs, a patient with ALS will develop cognitive impairment, including memory, mood, or language problems. “Unfortunately,” says Dr. Kafaie, “We still don’t know the exact mechanism of ALS. That’s why proving causation is very hard.” 

About 90% of ALS cases occur without family history; this is known as sporadic ALS. Sporadic ALS can occur in those who have experienced infections, inflammations, or physical chronic trauma, such as football players who suffer from chronic traumatic encephalopathy (CTE) or veterans who have experienced trauma in combat. In fact, military veterans are up to twice as likely to be diagnosed with the disease as the general public. The remaining 10% of ALS cases are known as familial ALS, meaning the disease was inherited genetically. 

A Complex Problem Requiring a Comprehensive Approach

Due to the complexity of the disease, diagnosing and treating ALS patients requires many different medical specialists’ expertise. As a Center of Excellence for the past 15 years and the only ALS Association-certified clinic in Missouri, the SLUCare ALS Clinic at Saint Louis University brings together numerous medical experts from across disciplines to care for those fighting this insidious disease, to conduct life-changing research, and to ultimately help change the prognosis for future ALS patients. 

The Clinic provides a team approach to care, coordinating services to diagnose and treat patients. The team includes neurologists, a neuromuscular clinical nurse, a neuropsychologist, a gastroenterologist, a pulmonologist, an occupational therapist, a physical therapist, a speech/language pathologist, a respiratory therapist, a dietitian, a social worker, and a representative from the ALS Association who visits bimonthly. “It is a team effort, and it is amazing,” says Dr. Hayat. “The team—they do their work from the heart.” 

By bringing together a team of experts in a single location and taking a scientific and evidence-based approach, the SLUCare ALS Clinic can coordinate treatment for ALS patients and address their wide-ranging needs in one visit rather than multiple appointments. The team works in conjunction with the patient's primary care physician to develop a treatment plan that maximizes function and maintains the highest possible quality of life. 

This multidisciplinary center provides a central point of care for diagnosis, treatment, and follow-up; advanced testing capabilities for accurate diagnosis; specialized services; participation in clinical trials where patients can access new drug therapies; education for patients and their families about the ALS disease process, treatment options, and research; and even access to medical device representatives. Reports and studies show that patients who visit multidisciplinary clinics have an increase in their quality of life. In fact, 30-40% of ALS patients seek treatment at a multidisciplinary clinic, and some studies suggest these patients live 10-12 months longer. 

Ensuring patient nutrition is key to optimal health and quality of life. “I think about one person in particular. . . He had been a park ranger at a national park his entire life. And then he had to come back and live with his parents, but he lived for two or three years. After getting his G-Tube put in, he wrote two books about the national park where he worked using his eyes. I'm not saying it was easy, but he had a meaningful life,” says Mary Burton, M.D., gastroenterologist, a member of the ALS Clinic multidisciplinary team. 

When you break the news to a patient that they have ALS, many think it is the end of everything for them. That is where our work comes in. Our job is to let them know that they can still maintain a quality of life. We say to them, ‘We are here to help you."

— Dr. Jafar Kafaie

“We Are Here to Help You”

The SLUCare ALS Clinic is headed by Dr. Ghazala Hayat, a neurologist who specializes in neuromuscular disorders. Dr. Hayat joined Saint Louis University in 1986 after completing her residency and fellowship in neuromuscular disorders and neurophysiology at Virginia Commonwealth University Medical College. “When you break the news to a patient that they have ALS, many think it is the end of everything for them,” says Dr. Hayat. “That is where our work comes in. Our job is to let them know that they can still maintain a quality of life. We say to them, ‘We are here to help you.’”

The Clinic works with approximately 75-95 unique patients per year, seeing 12-15 patients per day. Patients come from all over the region, including Illinois, Tennessee, Kansas, and Kentucky. When the patient first comes into the Clinic, they are evaluated by the whole team. The doctors determine what their motor strength is, how they are swallowing, their speech, their respiratory qualities, and other factors. They identify what their needs are before beginning treatment. Generally, a new patient is seen within two weeks of calling for an appointment; with an ALS diagnosis, time is everything. “That is the most important thing,” says Dr. Hayat, “the patient should not be waiting.”

SLUCaere's ALS team.

The Clinic provides a team approach to care, coordinating services to diagnose and treat patients.

After the initial appointment, the team of doctors discuss the diagnosis and finalize the treatment plan. Then, the patient is generally seen every 2-3 months, depending on the progression of their case. The team often collaborates with the patient's primary care physician to develop a treatment plan—coordinated to maximize their function and help them maintain the highest possible quality of life. 

According to Dr. Hayat, “The diagnosis does not mean we cannot do anything to help. There are a lot of things we can do to help patients by being preemptive and coordinating care.” Among the options available, there are two FDA-approved medications for the treatment of ALS—Rilutek (riluzole) and Radicava (edaravone).

Before the COVID-19 pandemic, patients were seen at the Clinic by the team or in their homes by ALSA local chapter caseworkers. It is vital to meet with the patient’s family to know the patient’s support structure and see the home to gauge what services the patient might need in the future. For example, if the patient has difficulty walking, the Clinic team will determine that the patient needs a power wheelchair and will see how it fits into the home setting. “ALS is not just the disease of a person; it involves the whole family,” says Dr. Kafaie. 

The ALS Clinic team has a support structure in place to think outside of the box when it comes to finding solutions to meet the needs of patients and families. “We partner closely with the ALS Association to support patients in many different ways, including help with loaner programs for medical equipment.  We also screen for any barriers that may impact a patient’s ability to receive appropriate care and services.  We have an ALS fund to help with any patient and family financial barrier,” says Cindy Roseman, LPN, a member of the ALS Clinic multidisciplinary team. 

The support of the Clinic team extends far beyond the walls of SLU—into the community, explains SLU Clinic member Nancy Schlechte, MSW. “My primary role is helping patients with care coordination.  I serve as a navigator to help patients apply for social security disability benefits…helping them arrange home healthcare and outpatient therapy services, helping them access medical equipment.”

With the support of Schlechte and ALS Clinic team neuropsychologists Lauren Schwarz, Ph.D., ABPP-CN, and Phillip D. Ruppert, Ph.D., on staff, the Clinic team also addresses the mental health needs of patients. “One particular younger patient had to stop working and was concerned about providing for his family,” says Schlechte. “He had a wife and young kids. We worked with them to get the kids into counseling to help them cope with the challenges of the disease, and made sure everyone’s needs were addressed. His goal was to stay in his home, and we made that work by connecting the family to different resources. After he passed, his wife called and said, ‘I could have never made it through this journey without the help of your clinic.’” 

Working to Find a Cure

As part of academic medical practice and as an ALS Certified Center of Excellence, the SLUCare ALS Clinic treatment team includes Saint Louis University researchers who are actively seeking a cure for ALS. The Clinic is part of the Northeast Amyotrophic Lateral Sclerosis (NEALS) Consortium, an academic research consortium for the ALS community. Over 100 research centers are members of the NEALS Consortium, each committed to performing research in ALS and motor neuron disease (MND). These research centers share data and collaborate on clinical trials. 

One such clinical trial is the HEALEY ALS Platform Trial, a multi-center, multi-regimen clinical trial evaluating the safety and efficacy of investigational products for the treatment of ALS. As a platform clinical trial, the HEALEY Trial allows for the evaluation of multiple interventions using interim evaluations and the addition of new interventions during the trial. This differs from a routine clinical trial, which tests one intervention at a time. The platform format can speed up the clinical trial process by two times, and enrollment is generally higher. Additionally, platform clinical trials can decrease the budget by up to 30%. “Research is basically the pursuit of truth,” says Dr. Hayat. “When we do research, we are not inventing anything, we are just looking at what God has created and how we can use that to help people.” 

More than 50 centers across the country participate in the HEALEY Trial, and patients at the SLUCare ALS Clinic have the opportunity to participate. “We are serving our patients by giving them hope,” says Dr. Roula al-Dahhak, another neurologist at the Clinic. “It is not a false hope. I tell them, ‘Look, we're not there yet, but eventually anything you can contribute now with being here and helping us to collect data, you are helping future patients.’” 

Researchers are currently testing four medications, the last of which was added in early January; a fifth one is set to be added by March 2021. All the medications on trial have passed phase one and phase two of the clinical trials. 

Patient evaluation

Patients are evaluated by the entire team to determine strength, speech, respiratory qualities and mental health.

For the Service of Humanity

One of the biggest challenges of ALS is that scientists do not have the biomarkers for the disease. A patient can’t just walk into a clinic, take a blood or urine test, or cerebrospinal fluid test to determine if they have ALS. Diagnosing the disease takes time and requires ruling out other possible diseases. Finding the biomarkers for ALS is critical because then gene therapy can be leveraged to find the disease earlier, changing the trajectory of a patient’s life. 

In the meantime, doctors like those at the SLUCare ALS Clinic are not only doing everything they can to help patients maintain their quality of life, but they are investing significant energy in research and studies like the HEALEY Trial. While at times it can feel as though the race to find a cure for ALS is slow going, Dr. Hayat feels confident in the progress being made. “When I was a fellow, there was no medication, and then a medication was approved, and then almost two decades later, a second medication was developed. Now we have the HEALEY Trial, which will hopefully yield a few more medications.” Likely ALS treatment will involve a cocktail of medications, similar to a cancer regimen, which will slow down the progression of the disease and prolong patients’ survival times.

Dr. Kafaie also believes the next decade will bring about significant progress: “I do believe we are living in a very exciting time,” he says. “We understand more and more about ALS, and with the introduction of extensive studies like the HEALEY Trial, I am hoping that in the next decade, even if we do not have a cure, we will have a very good medication that can modify the process of ALS significantly.” 

Dr. Ravi Nayak, pulmonologist, part of the ALS Clinic multidisciplinary team explains, “We live the mission of SLU through our work with the ALS Clinic. We are focused on patient-centric care. We take our time; we don't rush our patients. We provide high-quality care with empathy and compassion, going above and beyond to take care of each patient like we care for our own.”