Time has a way of sneaking by when we aren’t looking; not the day-to-day so much, but the sliding of the calendar from year-to-year. What seemed like just a few years ago suddenly is a decade more in the rearview mirror as we zoom on to what’s next.
Think back to 2005—not that long ago, right? You might think things were not that much different then; not that long ago. You might hop on YouTube to see what happened back then, but if you did that back then, you would have been cutting edge: YouTube wasn’t a thing until February of 2005. And hopefully you were a college student back in 2005 if you want to see what was happening on Facebook, since it didn’t open up to the general public until a few years later. And of course if you were doing any Googling for “what happen in…” back in 2005 you were likely doing it from your desktop, as the first iPhone didn’t come out until 2007.
But while the world is different now as opposed to 2005, some things aren’t. In 2005, the SLUCare ALS Clinic was recognized as an ALS Association Certified Treatment Center of Excellence, and remains so to this day. This certification means that a clinic meets rigorous clinical care and treatment standards, participates in ALS-related research and has successfully completed ongoing comprehensive site reviews. Nationwide, there are only 72 ALS Association Certified Treatment Centers of Excellence.
Dr. Ghazala Hayat is the director of the SLUCare ALS Clinic and has been at Saint Louis University since 1986. She has seen firsthand the changes in ALS treatment over the years and how the clinic has adapted to those changes.
“Our understanding of genetics has increased; many genes have been identified,” Dr. Hayat says. “(In the next 5 to 10 years) We will probably have biomarkers to diagnose ALS and to follow progression/improvement with different therapies.”
The multidisciplinary approach followed by ALS Association Certified Treatment Centers of Excellence allows for coordinated care for a person with ALS where experts from a range of fields evaluate and manage treatment together. During a clinic visit a person with ALS and caregiver will have the opportunity to meet with a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and an ALS Association chapter liaison. After clinic this group convenes for a holistic discussion to plan treatment and make sure all needs are met.
COVID-19 has presented challenges to the clinic. While all clinic visits were virtual initially, for the last few months in-person visits have been allowed again, although the virtual option remains for those who prefer. This change has been coupled with a more welcome one: a move to the new Center for Specialized Medicine building on the SLU Medical Center campus. The new clinic space provides for state-of-the-art facilities designed for patient access, including more spacious rooms and hallways to allow for easier access for wheelchairs and other mobility equipment.
And while much has changed during the 15 years the SLUCare ALS Clinic has been a Certified Treatment Center of Excellence, some constants do remain, including the longstanding relationship between the clinic and our Chapter.
“This is a very important relationship, (the ALS Association St. Louis Regional Chapter) is our ‘eyes and ears on the ground’ in-between visits,” Dr. Hayat says. “We coordinate care during ALS clinics, and (the Chapter liaison) gives us information from virtual/in person visits, including outcomes.”
If 2020 has taught us anything, it is that you can’t predict the future. Dr. Hayat is optimistic about the research being done on biomarkers to diagnose ALS and is hopeful this will aid in tracking progression of ALS and lead to more effective therapies. Still, while we watch the calendar roll over from 2020 to 2021 and prepare to start another trip around the Sun, we can be assured that the SLUCare ALS Clinic will continue to provide the best possible care in a supportive environment to people with ALS in our community.