People with Down Syndrome (DS) have a 90% risk of developing Alzheimer’s disease (AD) over their lifetimes, with most receiving an AD diagnosis by the time they’re 54 years of age. This is thought to be linked to the fact that people with DS have an extra copy of the amyloid precursor protein (APP) gene, which resides on chromosome 21, and promotes the buildup of amyloid plaques in the brain. However, current prescribing criteria for innovative, anti-amyloid immunotherapies in the US explicitly exclude people with Down Syndrome and other intellectual disabilities. In their consensus statement, an international panel of experts convened by the National Task Group on Intellectual Disabilities and Dementia (the NTG) and the LuMind IDSC Foundation call for policy changes to urgently address inequitable access to AD drugs.
The consensus statement was developed as a result of deliberations between 20 international experts on AD and DS. The panel calls for adaptation of the current inclusion criteria for anti-amyloid immunotherapies to enable equitable access for people with DS and AD. These criteria do not currently account for the young age of people with DS and AD; inappropriately exclude of people with intellectual disability; and are designed around the use of cognitive tests that are not adapted for people with DS. To address this issue, the panel provide recommendations for modifications to prescriber guidelines, such as reducing the minimum age for treatment; consulting with DS or intellectual disability specialists; and using DS-appropriate measures of cognitive decline.
The panel also highlighted the need for improved guidance and education for primary care physicians and prescribers of anti-amyloid therapies, to ensure equitable access to these drugs for people with intellectual disability or DS; and called on pharmaceutical companies to include people with intellectual disability or DS in clinical trials, starting with the conduct of safety trials with FDA-approved anti-amyloid therapies. Read the consensus statement:
