Today, I am reflecting on my 148th Aducanumab infusion, and the realization that my next infusion will be my last as part of this multiphase clinical trial. This is a bittersweet moment for me, as my family and I believe Aducanumab has been a lifesaver, improving my cognitive function and helping me to live a more fulfilling life. But now, with this trial phase coming to an end, I am filled with anxiety and uncertainty about what the future holds.
As a long-term trial participant, I feel a sense of responsibility to advocate for myself and others who have been on this journey with me. We have invested so much time and effort into working with the memory centers and Biogen to progress this medication, and it is difficult to know that we may no longer have access to it.
The reality of the situation is that Aducanumab, branded as Aduhelm, may cost thousands of dollars, and many people will not be able to afford it. This is a tragedy, as it means that people who have put in so much time and effort to help advance this medication may not be able to continue to benefit from its life-saving effects. This challenge is even greater because Medicare has refused to provide coverage for this groundbreaking drug, a decision followed by commercial insurance companies.
This is why I am calling on Biogen to partner with those of us who have participated in the trials and recognize the value of our efforts. As long-term trial participants, we believe that we should be offered the opportunity to remain on the medication for as long as possible, as long as we continue to meet the criteria. We need Biogen to understand that we matter, and that our contributions should be valued and rewarded.
Today marks an important moment in my journey with Aducanumab, and I hope that it will lead to a brighter future for everyone involved. I believe that with the right support, we can overcome the challenges that lie ahead, and ensure that everyone has access to the life-saving benefits of this medication.
Thank you Phil Gutis
Center Watch