UsAgainstAlzheimer’s Releases “Preparing Us for a Cure,” Trio of Research Products Examining Ways to Ensure Alzheimer’s Treatments and a Cure Can Be Effectively Deployed

Los Angeles, CA (July 16, 2019) – At the Alzheimer’s Association International Conference (AAIC), UsAgainstAlzheimer’s (UsA2) today released “Preparing Us for a Cure,” three research products on key areas of Alzheimer’s disease that impact the lives of patients, caregivers, and communities. This research underscores the importance of ensuring that the American healthcare system, payers, and other market entities are prepared to quickly and effectively deploy treatments and a cure for Alzheimer’s disease. 

“‘Preparing Us for a Cure’ is all about readying our healthcare system so that when treatments and a cure are ultimately developed, patients and caregivers aren’t forced to wait 10 more years for the healthcare system to catch up to the science,” said George Vradenburg, chairman and co-founder of UsAgainstAlzheimer’s. “We can’t afford to wait for access and payer issues, reimbursement, and other systemic challenges to be addressed down the road. 

“UsA2 and its network of more than 150 collaborators believe that the 5.8 million people living with Alzheimer’s in the United States have already waited too long. We must push for a cure while preparing our healthcare system – simultaneously.” 

The three UsA2 research products highlight systemwide opportunities to improve how we listen to those affected by Alzheimer’s, where and how pharmaceuticals invest research dollars, and how the field can best engage with communities disproportionately impacted by Alzheimer’s in delivering treatment options:

1. UsA2’s What Matters Most study provides for the first time a look at the preferences and priorities for treatment outcomes for those across various stages of Alzheimer’s disease and their caregivers. This two-phase study is designed to transform patient and caregiver preferences into standards by which drugs are approved and reimbursed. 
2. UsA2’s pharmacological pipeline report identifies, classifies, and inventories drugs currently in development in Phase II and III, but concludes the healthcare system is not ready for these drugs if and when they come to market – rendering patient preferences moot. This is particularly true when it comes to payment and reimbursement issues. 
3. UsA2 partnered with Integrace Institute and the Latino Alzheimer’s and Memory Disorders Alliance of Chicago, IL, to leverage community-engaged research methods to better understand care outcome preferences among Latinos – a group 1.5 times more likely to develop Alzheimer’s than non-Hispanic whites.

Key Findings

What Matters Most Phase I Qualitative Patient and Caregiver Study [Link here]

• While all participants reported short-term memory issues, the majority of those with underlying Alzheimer’s pathology – but no clinical diagnosis of Alzheimer’s – reported specific problems like misplacing common objects and increased reliance on reminders and lists and all reported symptoms related to memory and forgetfulness. Individuals in this “pre-symptomatic” subset were not expected to report such memory complaints, which are more correlated with a formal Alzheimer’s diagnosis, such as Mild Cognitive Impairment, than with general memory concerns expected in the population.
• Participants reported specific issues such as forgetting dates or appointments (e.g., Alzheimer’s pathology but without clinical diagnosis [n = 3; 25%] as compared to those with severe Alzheimer’s [n= 12; 100%]) or forgetting to take medications (e.g., Alzheimer’s pathology but without clinical diagnosis [n = 1; 8.3%] as compared to those with severe Alzheimer’s [n= 10; 83.3%])  with increasing frequency in relation to disease severity.
• Participants diagnosed with mild Alzheimer’s disease (middle stage) reported the most varied symptoms of any subject group, compared to those with unimpaired cognition but evidence of Alzheimer’s pathology and late-stage participants whose symptoms were highly convergent within their respective groups. The broad heterogeneity in the group diagnosed with mild Alzheimer’s may suggest differences in how clinicians view the diagnosis of “mild Alzheimer’s disease,” a finding of significance for drug development aimed at this population.
• “Improving and restoring memory” and “stopping disease progression” were the most important treatment outcomes across all participant groups – underscoring the need to better understand how these two very different patient outcomes are weighted by individuals across the multiple stages of the disease. Caregivers of people with advanced disease also reported “stopping the progression” as second only to restoring memory.
• Traditional neuropsychological assessments may measure various aspects of cognitive functioning often impaired by Alzheimer’s disease, but it is unclear whether they can measure the often subtle changes that are important to individuals with Alzheimer’s and care partners (e.g., decreased socialization due to concerns about forgetting names or losing track when speaking to others; depressed or anxious thoughts due to changes in memory; increased dependence on others for even basic chores).

Alzheimer’s Pharmacological Pipeline Report [Link here]

• This year, three new Mechanisms of Action – i.e., pathways to attack Alzheimer’s disease – have emerged in the pipeline: stem cell, antimicrobial, and endocrine. This speaks to a continuing diversification of the pipeline and demonstrates the broad range of ideas being considered to fight the disease.
• Phase II drugs targeting amyloid – historically one of the most popular targets of pharmacological attack in fighting Alzheimer’s – have increased 30% since 2017, indicating maintained interest in this pathway. That number has dropped nearly 50% in Phase III, however, due to an ultimately low success rate.
• The future of a pharmacological cure for Alzheimer’s lies in a “cocktail” approach – a combination of pharmacological treatments that target a variety of Mechanisms of Action working together to treat and cure the disease.

Latino Caregiver Preferences Pilot Study [Link here]

• Generally, initial research indicates that there is divergence between Latinos and non-Hispanic whites in prioritizing treatment goals and different forms of caregiving.
• Latino caregivers that participated in this study indicated it was highly important to pharmacologically treat changes in their loved ones’ behavior resulting from Alzheimer’s disease, such as aggression.
• Using preference-based tools on caregivers is a novel approach that is illustrating the heterogeneity of caregiving preferences among different communities impacted by Alzheimer’s and related dementias.

“As the number of those living with Alzheimer’s grows, the gaps in the healthcare system will only widen if the system continues to lag behind the science,” added Vradenburg. “This only makes more critical the immediate need to ‘Prepare Us for a Cure.’”

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