This week (Thursday, September 23, 2021) I received an early morning call from Texas Neurology confirming that I have been officially enrolled in the Healey ALS Platform Trial. Due to timeline protocols, (and the upcoming HPR membership campaign) Jen and I will be traveling to Dallas this Saturday for our first official appointment!
I’ll be on the Zilucoplan regimen, which will require daily self-administered shots (yikes!). My journey to help find a cure for ALS starts officially Monday at noon!
Why am I putting myself through this intense and stressful process? Because it is important to help science find a cure, if not for me for the next generation of people impacted by ALS. It provides me a purpose, and helps me accept my situation if I can help others.
The road to this important appointment started just shortly after my official diagnosis when Jen and I decided to tackle this disease head on. When you hear that you have ALS, typically what follows is the doctor encouraging you to “get your affairs in order,” and it is so easy to just allow ALS to consume you and wait for your “sunset” to arrive.
Hell no. Not me.
We started to look for possible ALS trials that I could qualify for, and I quickly learned that there were NO trial opportunities in Hawai‘i. We kept looking, and found the Healey ALS Platform Trial based out of Mass General in Boston, Massachusetts, which has a network of over fifty participating neurology clinics scattered across the mainland.
This is the first ALS platform trial, accelerating the path to new ALS therapies by testing multiple treatments at once, reducing the cost of research by 30%, decreasing the trial time by 50% and increasing patient participation by 67%. There are currently four treatments being tested, and because each treatment is sharing placebos, the active drug to placebo ratio is 3:1. I’ll have a 75% chance of getting the active drug.
We identified a couple of clinics, in California, Texas, and Florida that we wanted to apply to, but quickly ran into obstacles. “But you live in Hawai‘i! Why would you want to fly to our site for treatments?!”, was the typical response to our opening email. Eventually, we contacted the patient navigators working with the Healey trial, and they quickly jump on our team and contacted a couple of clinics we were interested in. The wheel began to turn.
We settled with Texas Neurology, located in Dallas, for several reasons: multiple daily direct flights from Honolulu on American Airlines, a place to stay (Jen’s brother) close to the clinic, and of course, home of the Dallas Cowboys! 😊 But most importantly, the team at Texas Neurology was supportive, responsive, and helpful from the start.
Our first “new patient” visit in early September resulted in the team re-shuffling their schedules to accommodate me for the actual trial screening appointment, saving us one additional trip to Dallas. Both visits were four hours each! The screening data was submitted to the Healey team, and then we waited for official confirmation of enrollment.
That call came in this week, and here we go!
My participation in the trial will last six months, with visits to Dallas once a month to obtain a fresh supply of injections and to be assessed for progression. After the six months, I’ll be able to receive the active drug, regardless if I was on placebo or not (and I’ll never know), for another year or re-enroll to be assigned to another regimen.
It’s a quick turn around trip. We leave Saturday evening, arrive in Dallas Sunday morning, have the appointment Monday at noon, and depart for home Tuesday morning, arriving in Honolulu Tuesday afternoon. Wednesday, I start fundraising for Hawai‘i Public Radio for 9 days, and then hop back on a plane for Dallas the week of October 11, 2021.
More updates here on Team José soon, and if you are able, support my journey with a contribution of any amount to our crowdfunding campaign, it will very much be appreciated. Sorry, no tote bag, coffee cup, or socks to thank you with, but know my heart is full of joy from your love and support.