I want to step back and talk about how we practice at Synapticure. Like all physicians, we are devoted to your care. That devotion, however, should never be qualified by judgment of you for seeking treatments that may extend your life.
ALS does not have a cure…yet. What patients living with ALS do have though are three disease modifying drugs, each shown to slow progression of the disease, as well as off label medications and supplements that may slow progression. Relyvrio, the latest drug to be approved by FDA, showed that over 24 weeks, there was about a 25% slower decline in the ALSFRSr.
A quarter, 3 months out of the year, a summery season, 25 dollars back on a hundred, a fourth of a pie, 15 minutes out of an hour to relax and reset yourself. These are just a few of the 25%s around us. Would anyone throw any of that away? Perhaps, but I would think not. Now look at 25% in relation to slowing this disease and having more time or longevity; I would challenge anyone to disregard its worth.
Even though 25% is a fraction, a piece of what you would want to have, it is still more than 0 through 24 %. Valuing that small, yet mighty, piece is essential for medical and personal perseverance: the key ingredient to one day finding a cure.
Let’s be clear that this 25% is yours. It is not ours. Its value to you is your decision alone and our sentiments about that should never infringe upon your autonomous decision making and should certainly never serve to minimize your heroic fight. We should not dismiss what a fraction of anything means to anyone else, as that is simply devoid of empathy.
If something doesn’t fit into your vision of your life and your treatment plan, then that is for you to say. However, if every second that these medications can afford you, means everything to you, it means everything to us. We will be here to honor that and to walk with you on a path that is ever-lengthening into that horizon that holds the cure.