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Published on December 04, 2017
When James "JP" Whalen noticed pain in his shoulder, he assumed it was a rotator cuff issue. Minor surgery perhaps and then back to life as normal.
But an MRI indicated this was more than a routine issue. After more tests and an appointment at the Mayo Clinic, JP and his wife Donna heard a diagnosis that would change their future: amyotrophic lateral sclerosis, or ALS. Commonly referred to in the U.S. as Lou Gehrig's disease, ALS is a progressive neurodegenerative disease.
It is 100% fatal.
JP is not new to the medical world. He built his career as a mental health professional/adult rehabilitative mental health services (ARMHS) supervisor in Brainerd, MN, having earned his Ph.D. from the University of Wisconsin "“ Madison. He's learned a lot throughout his career, and those learnings became key as he started on this journey.
The first learning was the importance of getting to a place of acceptance. "I cried the whole way home from Mayo," said Donna. "He took it as 'this is my cross to bear'."
"Through my career, I've learned that once you accept, you can move on." JP stated.
The other key learning that kicked into gear was the importance of being your own advocate. Not one to sit back and wait, he did his research. That research eventually brought him to an article about a trial in Japan for a new ALS drug. This was significant; there has not been a new ALS drug for over 20 years. The initial results showed it was slowing down the decline in ALS patients to allow them to prolong the ability to perform daily functional activities. He participated in a webinar to learn more, and knew this was something he wanted to have access to use in his own treatment plan. He spoke to his doctors, but at that point it was not available through the Mayo Clinic. In fact, it wasn't available in Minnesota at all since the FDA approval had only happened within the last few months.
But when you become your own best advocate, those are just hurdles yet to be overcome.
He used his resources, and connected with SearchLightTM, a resource provided by the drug manufacturer. Through his conversations with them, the possibility of having access to the drug wasn't completely out of reach. It wouldn't be simple, but it wouldn't be impossible either. But a key to the whole opportunity would be locating an infusion center willing to take this on. In a chance conversation with a friend, JP mentioned this gap. The friend shared that there was an infusion center just minutes away at Essentia Health "“ St. Joseph's Medical Center right in their hometown of Brainerd. The friend knew the manager, and immediately reached out to make the connection.
Marian Foehrenbacher, Essentia Health Cancer Infusion Manager, recalls that initial conversation. "This is a new drug, but I'm a passionate person. I'm not patient!" Marian reached out to team members who could help, including Cathy Eliason from Managed Care to work on the incredible challenge of authorization logistics. Initially insurance rejected the treatment. "It took a lot of people to make this happen."
It didn't happen overnight, but eventually word came that through the hard work of the team at Essentia Health "“ St. Joseph's Medical Center, they would be the first in the state to administer the drug, Radicava.
There is no cure for ALS. JP is not oblivious to this fact, "I don't know how much this can do for me, but hopefully it can for other people. That's kind of where I'm at."
The treatment is showing early signs of success in slowing down the progression of the disease in JP. That became apparent when they attended a support group and could see how much further ALS had progressed in the other attendees. That future for JP, although imminent, is something he is not going to just sit back and watch happen. Through the ALS Association, he's been spending time at the Speech-Language and Hearing Clinic at St. Cloud State University to record 1,600 words in his own voice to prepare for the day an eye recognition computer will need to speak for him. Only in his case, it won't be a robotic voice. Friends and family will hear his words in his own voice.
What's next in his treatment plan is unknown. It's expensive, and they're unsure if Medicare will allow him to continue the drug past February. But JP and his wife will face that as they have this entire journey: together. "I notice what a remarkable team you two make," said Marian, "I'm so glad you made that call."
JP agrees, "I couldn't do it without her."
The impact of the staff at Essentia Health is apparent. "You've become an important part of our lives," Donna shared with the infusion center staff. "We're considered outstate Minnesota. Thank goodness Brainerd was willing to run with it or people like us would have to drive hours for each treatment. That's what being local is all about. I'm so proud of Essentia Health. They're some of the best people you'll ever meet."
(Note: a second ALS patient is now also receiving this treatment at Essentia Health "“ St. Joseph's Medical Center. )