Preparing Us for a Cure

July 15, 2019 -

During the 2019 Alzheimer's Association International Conference (AAIC), UsAgainstAlzheimer's is releasing "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. We can’t afford to wait for access and payer issues, reimbursement, and other systemic challenges to be addressed down the road. UsAgainstAlzheimer's 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 UsAgainstAlzheimer's 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. UsAgainstAlzheimer'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. UsAgainstAlzheimer'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. UsAgainstAlzheimer's 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]

  • "Improving and restoring memory” and “stopping disease progression” were the most important treatment outcomes across participant groups – revealing two different patient outcome preferences across multiple stages of the disease.
  • Patients diagnosed with mild Alzheimer’s disease (middle stage) reported the most varied symptoms of any subject group, compared to pre-diagnosed and late-stage participants whose symptoms were highly convergent.
  • While all participants reported short-term memory issues, even those completely undiagnosed, specific problems like missing appointments or forgetting medications were more correlated with a formal Alzheimer’s diagnosis than general memory concerns.

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. This only makes more critical the immediate need to ‘Prepare Us for a Cure.’