Urge policy makers to improve care and provide an early and accurate diagnosis.

We recently shared with you the astonishing fact that half of the more than 5 million Americans with Alzheimer’s have never received a formal diagnosis. And since we know that an early and accurate diagnosis leads to better outcomes and higher quality of life for people with Alzheimer’s, it's vital that we provide access to those benefits. Yet, the federal government has said there is insufficient evidence that a diagnostic test called brain amyloid imaging improves health outcomes.

Please take a few moments to urge policy makers to improve care and provide an accurate diagnosis.

On July 3rd, Centers for Medicare and Medicaid Services (CMS) -- the agency that controls many aspects of the Medicare services you receive -- issued a disappointing draft decision on coverage for a particular type of diagnostic test called brain amyloid imaging (read more). CMS stated they believe there is insufficient evidence that use of this test improves health outcomes for Medicare beneficiaries with dementia or neurodegenerative disease in specific populations.

However, the Alzheimer’s Association convened the Amyloid Imaging Taskforce, a group of leading experts in the field, who recommended that for certain situations amyloid imaging should be covered by Medicare immediately to improve the quality of care. One of those situations is when a dementia expert is unsure whether a decline in memory is due to Alzheimer’s or some other -- perhaps preventable -- cause.

Thankfully the decision is not yet final. Make your voice heard if you have had firsthand experience with dementia diagnosis and care, for yourself or a loved one. If you and your family experienced challenges in obtaining a diagnosis, or if an accurate diagnosis has allowed you and your family to better plan and manage the disease, please share your experience.

Those who have lived with Alzheimer’s or related dementias know an early and accurate diagnosis allows individuals with the disease and their caregivers to better manage medications and other chronic conditions, receive counseling, engage in financial and long-term care planning, and consider all medical and non-medical treatments and supports – including participation in appropriate clinical trials. These benefits improve the quality of life for those fighting Alzheimer’s and can lead to significant cost savings, both for individuals and our nation.

We can’t afford to postpone for years important tools that are ready to help doctors provide better Alzheimer’s care today.

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