By Phil Gutis | January fifth, 2023
An Supply He Couldn’t Refuse: Reporter Phil Gutis interviews Joanne Pike on her first day as CEO of the Alzheimer’s Affiliation
As any reporter will inform you, the pitches from public relations people will be ceaseless. However late final yr, I acquired a proposal I couldn’t refuse. It got here from the Alzheimer’s Affiliation, and it was a proposal to do the primary interview with Joanne Pike on the day that she turned the affiliation’s president and CEO.
The e-mail defined that they thought it was acceptable to supply Pike’s first interview as CEO to a author like me, who resides with Alzheimer’s. As they in all probability anticipated, I couldn’t agree extra.
Pike, who holds a doctorate in public well being management, has spent her total profession in well being coverage advocacy. She joined the Alzheimer’s Affiliation in 2016, overseeing care and assist companies — outreach geared toward creating partnerships with well being methods and physicians. She has additionally served because the affiliation’s chief technique officer. Pike takes over from Harry Johns, who served because the Affiliation’s lead government since 2005.
Pike assumes management of the affiliation at what she phrases a “pivotal second for Alzheimer’s analysis, potential for brand spanking new remedies, and what which means for the way we offer care long run.”
She additionally assumes management at a time when the FDA is poised to approve lecanemab, the second-ever illness modifying drug for early Alzheimer’s. The company is anticipated to make its determination on lecanemab as quickly as this Friday, and the anticipated final result is an approval. If this new, disease-modifying Alzheimer’s intervention is certainly authorised, all eyes will then shift to the Facilities for Medicare and Medicaid, which final yr blocked widespread protection of aducanumab (model identify Aduhelm).
“What CMS did was an unprecedented step when it comes to blocking a whole class of remedies for these residing with early stage Alzheimer’s,” Pike mentioned, including that CMS’s determination “didn’t present entry to therapy the identical manner that others with different ailments have entry to first-line therapies.”
Late final yr, the Alzheimer’s Affiliation filed a proper request with CMS that it rethink its blanket determination to require additional proof earlier than approving any of the medicine like lecanemab for protection by Medicare.
“The present CMS coverage to severely restrict entry to those remedies eliminates folks’s choices, is leading to continued irreversible illness development, and contributes to higher well being inequities,” Pike mentioned in a information launch on the time. “That’s not acceptable.”
Within the interview, Pike declined to invest why CMS continues to discriminate – my phrase, not hers – in opposition to folks residing with Alzheimer’s. And he or she emphasised that the neighborhood all the time knew that the primary FDA-approved therapy for Alzheimer’s was not going to be a treatment.
“However what we do imagine is that people ought to have the appropriate to have an knowledgeable determination with their healthcare supplier about advantages and dangers, and make these decisions collectively for themselves,” Pike mentioned. “And so, any barrier — whether or not that’s price or protection, logistics, or information within the healthcare system — is unacceptable, particularly when it’s an FDA-approved therapy.”
Pike responded to critics who thought it was inappropriate for the affiliation to push so laborious for approval of aducanumab.
“Our determination then and now and into the long run,” she mentioned, “is predicated on one factor and one factor solely, and that’s the science.”
As a patient-advocacy group, Pike mentioned the affiliation sees its position as advocating for and funding analysis that can result in innovation in therapy and diagnostics.
“The primary authorised therapy results in the second and the third, and solely will get higher over time,” she mentioned. “And so whereas actually we had been keen to advocate on behalf of science, that advocacy was for people who may gain advantage as effectively.”
The affiliation continues to imagine that discovering a “silver bullet” treatment for Alzheimer’s illness is unlikely. Due to this fact, it’s going to proceed to fund and advocate for analysis into myriad potential paths of treating neurocognitive ailments.
Till scientists uncover these cures, Pike mentioned it’s essential that individuals identified within the earliest phases of the illness converse out for many who can now not advocate for themselves.
Talking out, she mentioned, will assist scale back the stigma that continues to plague folks residing with Alzheimer’s and different cognitive ailments.
By providing me the primary interview and serving to me amplify my voice (and hers), Pike actually appears keen to assist these of us residing with the illness to make use of our voices. Let’s hope that the remainder of the Affiliation, all of its regional and chapter administrators, will observe her management.
Phil Gutis is a former New York Occasions reporter and present Being Affected person contributor who was identified with early onset Alzheimer’s. This text is a part of his Phil’s Journal sequence, chronicling his expertise residing with Alzheimer’s and his participation within the aducanumab medical trial.
