Infused with Hope
Amy Rios May 10, 2019
How the exemplary care at an infusion center helped this patient advocate for the advancement of ALS research.
The first time Brian Wallach heard “Amyotrophic Lateral Sclerosis” was in a neurologist’s office in August 2017. He was 37 years old and, like many Americans, knew little about ALS, or Lou Gehrig’s disease, the eponym of famed baseball player Henry Louis Gehrig.
Brian, a former federal prosecutor in Chicago, first noticed symptoms one evening when his left hand cramped so severely that he couldn’t grasp his pen while taking notes on an upcoming case. “Like every 36-year-old man, I rationalized it as stress or exhaustion. We had a one-and-a-half-year-old daughter, and my wife was six months pregnant with our second…I figured it was just part of that unfortunate aging process,” Brian says.
Finding a Diagnosis
While he was in the hospital just days after the birth of his second child, he developed a persistent cough. At the behest of his wife, Brian went to see his primary care physician who, after evaluating Brian’s cough, weakened left hand, and arm twitching suggested that he see a neurologist as soon as possible.
“I remember my PCP said that these could be a series of benign symptoms or a more troubling diagnosis,” Brian says.
The next day, the possible prognosis of ALS was given by the neurologist, followed by the prediction that Brian only had six months to live.
ALS is a progressive neurological disease in which a person’s motor neurons degenerate, and the ability of the brain to initiate and control muscle movement is lost. There are two types of ALS: sporadic and familial. Brian, like 90 percent of people with the disease, has sporadic ALS where there is no clear cause or family history. Familial ALS runs in families and is passed down through a gene, accounting for approximately ten percent of ALS cases.
Because there is no test to confirm if a patient has ALS definitively, the diagnosis is reached when all other options are ruled out. After months of documenting progression and seeing different specialists, Brian received an official ALS diagnosis in November 2017.
Finding an Infusion Center
Fortunately, Brian’s diagnosis came on the heels of the Food and Drug Administration’s (FDA) approval of RADICAVA™, an intravenous medication treatment option for ALS that is shown to slow the loss of physical function in some ALS patients.
Due to the rigorous treatment schedule for the Radicava administration, Brian and his wife did extensive research on where they should seek care.
“We started looking for facilities in the Chicagoland area that were approved to administer Radicava…For us, the biggest factors were the centers’ patient safety record, proximity to our house and work, and convenient scheduling options that would be flexible for our lives. Metro Infusion Center has met all those criteria and then some.”
In November of 2017, Brian started Radicava infusions at Metro Infusion Center, a physician-owned and managed group of outpatient ambulatory centers that provide safe, cost-effective administration of a wide range of infusible products.
“I had to have daily Radicava infusions for 14 days in a row at the outset, then 14 days off, then a recurring cycle of 10 out of 14 days on infusions, then 14 days off…I spend a lot of time at the infusion center,” Brian says.
“The nursing staff are incredibly kind and incredibly engaging…When you spend as much time at the infusion center as I have, the staff there begin to feel like a surrogate family.”
“I have never heard them say, ‘no.’ When presented with a challenge, their response is always, ‘Let’s see how we can make this work,’ which is an incredible gift to someone diagnosed with ALS because at least one part of my treatment is taken care of and that allows us to focus on other aspects of managing this disease.”
Finding Hope
Not only does having reliable access to infusion care allow Brian to focus his time and energy on family, but also on growing the nonprofit organization, I AM ALS, which he and his wife started together in January 2019.
I AM ALS aims to increase awareness of the disease, as well as funding for research by building a patient-led, patient-centric movement. In a 2018 poll commissioned by the organization, it found that more than 60 percent of Americans knew little about ALS and nine out of ten Americans cannot name a single ALS non-profit charity or foundation working to cure ALS. The poll also found that Americans are far more likely to donate to fight a disease like ALS when they know someone who has been affected by the disease. I Am ALS is providing a platform to do just that.
“We are overwhelmed by our growth from 500 people in January, to now about 10,000 people in our community,” Brian says. On April 9, Brian testified before Congresswoman Rosa DeLauro, Chair of the House Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee on the underfunding of ALS research during the subcommittee’s Public Witness Day.
“I sit here filled with hope. Why? Because we can actually cure ALS. How? By fully and boldly funding the fight against ALS,” Brian says in his opening comments.
The subcommittee’s annual Public Witness Day allows the opportunity for Americans citizens to speak directly with decision-
makers about funding priorities for the issues that matter most to them. For Brian, it provided him the opportunity to express the need for additional funding for ALS research, and convey his hope and belief that a cure is imminent.
“The research that this subcommittee has funded over the last decade enables me to say, and truly believe, that it is no longer a question of if we can cure ALS, but when.”
To learn more about I Am ALS, visit their website at iamals.org. Follow them on Facebook, Twitter, Instagram, or YouTube for additional community updates.