The Louisville Walk to End Alzheimer’s team held a kick off event at Kentucky Farm Bureau on Thursday. Over 100 people joined the Greater Kentucky Southern Indiana chapter staff, teams and their captains at a ceremonial event signifying the start of fundraising season!
“Inspiring, Impactful and Informational,” Lisa Young, Senior Walk Director describes what it felt like in the Commonwealth Conference room at Kentucky Farm Bureau. The room’s moniker lived up to its name. It served as a place for all walks of life, different types of families, caregivers, senior care workers; the array of people who make up the commonwealth of Kentucky, but also shows the vast impact Alzheimer’s and Dementia has on our neighbors.
Annette B., Anthology of Louisville brought a resident from her senior care community. A daily reminder for why she fundraises, and who its for. It’s for the Linda’s of the world. Linda donned a purple lei, accessorized with an ear to ear smile, with hardware in her hands. Anthology of Louisville is the Walk to End Alzheimer’s 2022 Top Care Facility Fundraising Team.
Over the course of a 30-minute presentation, Anette and Linda were one of 22 teams and participants who received ultimate recognition for most fundraising dollars in a category.
Louisville Ambassador Family, Briscoe FamilyRoom full of proud supportersLisa Young, Senior Walk Director starting off the ceremonial presentation
During the course of the evening, attendees filled out forms to enter giveaway prizes for branded Walk water bottles and gift certificates for dinner at Texas Roadhouse. Four lucky winners were drawn, but everyone walked away with something…a fundraising challenge.
Young tasked everyone in the room to help fundraise enough to hit the overall goal before the day of the Walk to End Alzheimer’s. What’s the walk goal, you ask? $500,000. Where does the money go? It stays in your community, whether to provide free education to your neighbors, friends and families or fund local researchers to continue the ultimate goal to finding a cure for Alzheimer’s and other types of Dementia.
Want to learn more about the Walk to End Alzheimer’s? Follow this link for more information to find a walk fundraiser in your area!
Do you have an interesting story and want to be featured on our blog and social media pages? Contact Communications Manager, Jerrica Valtierra at jvaltierra@alz.org.
The Greater Kentucky and Southern Indiana Chapter (GKSI) sat down with Dr. Greg Cooper, Neurologist and Director at Norton Neuroscience Institute in Louisville. Jerrica Valtierra, Communications Manager, went over questions and concerns that families may have since the Food and Drug Administration traditionally approved and Centers for Medicare and Medicaid (CMS) agreed to the coverage of the Dementia treatments.
What is Lecanemab (Lequembi)?
The science behind the Lecanemab (Leqembi) shows efficacy and benefit to Early Alzheimer’s disease. Leqembi is an anti-amyloid treatment; it slows the progression of the disease when taken in the early stages of Alzheimer’s. This is a treatment of mild cognitive impairment (MCI) due to Alzheimer’s disease and mild Alzheimer’s dementia. According to Eisai and Biogen, the company announced in September 2022, the trial showed a slowed rate of cognitive decline by 27%.
Am I eligible for this Dementia treatment? If not, who is?
The results of the clinical trials treat the underlying causes of Alzheimer’s; it has the potential to change the course of the disease, clinically and in a meaningful way for patients. This treatment is for people who are in the early stages of Alzheimer’s, or any mild cognitive impairment (MCI) possibly due to Alzheimer’s.
Dr. Greg Cooper, Neurologist with Norton Neuroscience Institute, cautions patients’ expectations by explaining this treatment isn’t quite a cure, but with early detection and intervention will be necessary for the medication to have the helpful effects.
“The earlier we find this; the quicker we treat it, the more likely we are to be successful. That’s going to have to change our whole mindset,” said Dr. Cooper. “If I notice some changes in my memory and I think it’s probably normal, it’s still ok to be checked out. I believe – we will start seeing a lot of people earlier that have questionable changes in their memory. “
Those are already diagnosed with MCI or Early Stage Alzheimer’s Dementia, and enrolled in Medicare are eligible for the Dementia treatment. If patients are already taking Dementia medication, (listed below) you are still a candidate for the treatment.
The Alzheimer’s Association hosts education programs in your community to help inform families who are at risk for Alzheimer’s or Dementia. The education programs include; the 10 warning signs, which can help decipher what are the symptoms of the disease. If you’re interested in finding education programs near you, click here. For more information on the Education program topics, click here. Through research, the Alzheimer’s Association acknowledges the irreversible disease progression and emphasizes the importance of education and knowing what risk factors may contribute to mitigate the onset of symptoms.
Those who have progressed through the disease and are considered to be the mild or moderate stages are NOT eligible for this treatment. Please see diagram below for the Disease continuum diagram.
If a patient comes in and has MCI, then there will be additional testing done to determine if there are amyloids present in the brain and if the Dementia treatment is appropriate.
What’s the difference between Dementia and Alzheimer’s?
Dementia is the disease; and Alzheimer’s is the most common type of Dementia. 80% of patients are diagnosed with Alzheimer’s. (See diagram below for details on the types.)
If I’m eligible, what does insurance cover? How much will I have to pay out of pocket? What does the cost look like?
Dr. Cooper says the timeline for the access to the medication may be in the coming months. According to CMS; coverage for Medicare patients may include PET scans, to further test amyloid positivity. Currently, doctors may test using a Cerebrospinal fluid analysis, but that method tends to be costly and not widely covered by insurance providers.
The Lecanemab (Leqembi) has a yearly cost of $26,500. However, CMS has agreed to cover that cost. The out of pocket cost has not yet been determined; as there may be a co-pay, infusion cost, and MRI scans, all of which would need to be determined by insurance providers.
The Alzheimer’s Association is committed to working with health systems and providers to ensure they have the resources and infrastructure to meet the needs of their patients. Participation in the Alzheimer’s Association’s Alzheimer’s Network for Treatment and Diagnostics (ALZ-NET), which will gather real world data on how people from all backgrounds and communities respond to novel FDA-approved Alzheimer’s therapies, is encouraged by the FDA in the prescribing information for Leqembi. However, the Alzheimer’s Association does not believe registries should be a requirement for FDA-approved treatment.
The Alzheimer’s Association stated its disappointed CMS has not initiated the formal process to reconsider the National Coverage Determination policy. The policy states a drug must meet several criteria and be formally approved to provide broader, national access to the medication up for consideration.
The Advocacy team is working tirelessly to remove all barriers to ensure families get medication they need to fight Alzheimer’s and other types of dementia.
This treatment is said to be ‘intravenous’, what does that mean? What can I expect?
The clinical trials have been intravenous and the results and side effects are derived from those trials.
The treatment will be administered intravenously, similar to being injected with IV fluids at infusion centers throughout the community. It will NOT be administered as a routine shot at the injection site.
The scheduling of the infusions will be every couple of weeks. Patients can expect the first infusion session to last about three to four hours, The actual infusion process is estimated to take an hour, as the medication is gradually infused during that time. Each infusion session is estimated to take a shorter amount of time after each visit, but that may vary depending on the patient.
The reason for longer times at the infusion appointments are to be monitored in the event of adverse reactions. In the clinical trials, about a quarter of the patients experienced side effects from the infusion, like headache, achy body, fever. Dr. Cooper is confident in the ability to treat those side effects, but these treatments are a gradual process and patients and their families should know these treatments won’t show any changes overnight.
“It’s a good step forward but not a trivial step forward,” said Dr. Cooper. “It’s going to be a burden for patients and their families they need to understand that up front.”
What’s going to happen after I receive the first infusion? What are the next steps?
Each patients’ journey may be different, just like each person battling any type of dementia. Most patients may have to get at least one MRI within 12 months or three within the first year of treatment. Some patients, who have genetic components, may expect four to five MRI’s within a 12-month span.
BACKGROUND:
The Greater Kentucky and Southern Indiana Chapter of the Alzheimer’s Association has worked with state and local partners to fund research through our year-round events; including the signature event the Walk to End Alzheimer’s. The GKSI Chapter hosts 12 Walk to End Alzheimer’s Fundraisers to give back to our local community and dementia researchers.
The Alzheimer’s Association is always available to answer your questions 24/7. You can call the helpline at 800.272.3900 to speak with our master-level certified clinicians and social workers for any questions or concerns you may have. The Greater Kentucky and Southern Indiana Chapter works with community partners and volunteers to support the community impacted by dementia. To start a walk team, please visit our registration page, here.
According to the Alzheimer’s Association, more than 6 million Americans are living with Alzheimer’s. Over 11 million Americans provide unpaid care for people with Alzheimer’s or other dementias. One in three seniors dies with Alzheimer’s or another type of dementia. Dementia kills more people than breast and prostate cancers combined. Between 2000 and 2010, deaths from Alzheimer’s disease have increased 145%.
Watch the 2023 Facts and Figures video below for more statistics on Alzheimer’s and Dementia.
