It’s not all that often you hear from those of us living with Alzheimer’s, but since my diagnosis seven years ago, my husband, Jim, and I have spoken to more than ten thousand people about this disease – educating, encouraging, and inspiring others to live rich and fulfilling lives in spite of their condition. Most recently, I had the privilege of taking this message of positivity and hope to Congress.
Geri & Jim Taylor
Last week, Alzheimer’s patient and caregiver team Geri and Jim Taylor participated in a briefing on Capitol Hill about the growing importance of access to amyloid PET imaging for diagnosis, research, and treatment of Alzheimer’s disease. You can learn more about this issue here: http://ow.ly/n0dJ50y99ebPosted by Right Scan Right Time on Dydd Llun, 3 Chwefror 2020
It’s been seven years since I was first diagnosed with mild cognitive impairment– a common precursor to Alzheimer’s disease that is also associated with other forms of dementia. After my diagnosis, Jim and I wanted to learn everything we could about the disease and its symptoms. Through our research, we eventually learned about a promising clinical trial for a new Alzheimer’s drug, something which I was enthusiastic about participating in.
To volunteer for the trial, I first had to confirm that I indeed had Alzheimer’s and not another form of dementia. So, to verify my condition, I underwent a special positron emission tomography (PET) scan, which tests for amyloid plaque buildup in the brain, a key pathology of Alzheimer’s disease.
PET scans use very small amounts of radioactive material in drugs (radiopharmaceuticals) to provide detailed pictures of what is happening inside the body at the molecular and cellular level. Where other diagnostic imaging procedures offer pictures of physical structure, nuclear imaging allows physicians to see how the body is functioning and to measure its chemical and biological processes. These nuclear imaging procedures can often identify abnormalities very early in the progress of a disease — long before many medical problems are apparent with other diagnostic tests and even before symptoms appear.
The results of my PET scan would eventually help place me in the early stage of Alzheimer’s progression– a reality that has shaped my life ever since. But while I was fortunate to have access to this incredible diagnostic tool, many patients aren’t so lucky. Due to unfortunate Medicare policies, a critical component of amyloid PET imaging– radiopharmaceuticals– are reimbursed at rate that is significantly less than the cost of the drug, limiting patient access to this game-changing diagnostic tool.
Fortunately, Congress can help. The Medicare Diagnostic Radiopharmaceutical Payment Equity Act (H.R. 3772) would reform the current system to adequately pay for these advanced nuclear imaging services. Jim and I hope that you will take a few minutes out of your day to write to Congress in support of H.R. 3772.