Jay Reinstein was diagnosed at age 57 with younger-onset Alzheimer’s disease more than two years ago.
After 25 years in local government, most recently serving as the assistant city manager in Fayetteville, NC, he began to experience issues with information recall and short-term memory loss.
Jay decided to go public with his diagnosis and has raised tens of thousands of dollars for Alzheimer’s research and sits on the national board of the Alzheimer’s Association.
Just last week, Jay was shopping for a new shirt when he received a text from his former boss stating the new and controversial drug aducanumab (AduhelmTM) had been approved.
Jay was overcome with excitement and quite literally jumped for “hope” when he read the news. Aducanumab is the first drug shown to slow the progression of Alzheimer’s and, according to the Alzheimer’s Association, this drug represents the beginning of a completely new future for Alzheimer’s treatments. While not a cure, this new treatment is pivotal, current progress in science is significant, and we know this will be the first of a number of treatments to come.
The hope that this drug represents means so much to people like Jay. It represents the promise of hope for more time for the family members of these patients as well.
Jay’s daughter Elizabeth said “this drug means there is hope. Hopefully my dad gets a chance to get this drug. I am only 26 years old and I want more time with my dad.” Jay knows the drug is not a promise for a cure, “that this is not a guarantee. I know that there are side effects but to me, the benefits outweigh. If it can even possibly slow the progression even just for a year or two I could get more time with my three kids and my grandkids. You have to be realistic. I know this is an initial step but this could be a game changer for the trajectory of my life.”
Members of the ABC11 Caregivers Corner Facebook group also reacted to the news of the approval of this drug. Most notably, caregivers are concerned about the cost, stating the nearly $56,000 annual price tag is very concerning. One caregiver posted: “I’m glad that the FDA is finally getting with the program…if I’m diagnosed with Alzheimers – I at least want a fighting chance.”
While the approval of this drug has had a polarizing effect, it is clear that Alzheimer’s disease is weighing on the minds of the individuals and families impacted by this disease.
If you are caregiving for a loved one and would like to get connected with others in our community who are walking the same path, join ABC11’s Caregivers Corner moderated by Nicole Clagett. The group has more than 1,600 people supporting one another and sharing wonderful information and resources daily. More helpful tips about this topic can be found on ABC11’s Caregivers Corner section.