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This past summer, Penn’s Alzheimer’s Disease Research Center (ADRC) held its inaugural session of the Aging Research Summer Internship.

Interns experienced hands-on research in laboratories across the ADRC and day-to-day activities and projects in various areas of the Penn Memory Center, such as communications, social work, clinical care, and neuropsychological testing.

“[The Aging Summer Research Internship] has been so enriching. It will help me towards my goal of becoming a psychiatrist,” said student intern Lorette Thomas.

Interns were paired with a mentor — a faculty member who provided support and guidance throughout the program — and assisted the mentor with their research.

By Daniel Gibbs, MD, retired neurologist and author, and Jason Karlawish, MD, co-director of the Penn Memory Center, geriatrician, and author

Both of us are physicians dedicated to the care of persons living with Alzheimer’s disease. We’ve heard thousands of moving stories from persons struggling with a fading capacity to exercise their free will and their friends and family members devoting time, effort, and resources to care for them. We feel their desperation.  

For one of us, this feeling isn’t simply professional. It’s intensely personal. Nine years ago, Dan retired from practicing neurology because of mild cognitive impairment (MCI) caused by Alzheimer’s disease.   

We wish we could have celebrated in June, when the Food and Drug Administration (FDA) approved Biogen’s drug aducanumab, marketed as Aduhelm, for the treatment of Alzheimer’s disease. We wish we were now condemning the Centers for Medicare and Medicaid Services (CMS) for its recent proposal to limit coverage of the drug to patients enrolled in a clinical trial of Aduhelm, known as “coverage with evidence development.” Instead, we weren’t celebrating in June, and now we thank Medicare for its courageous and reasonable proposal.  

For the Spring of 2022, the Penn Memory Center is offering a wide range of programs for patients, caregivers, and families. All programs are free, virtual, and require registration. Tap on the title of the program to register and for more information.

• Grief Yoga, first Thursday of every month at 11 a.m. starting Jan. 5
• Cognitive Comedy, Tuesdays at 1:30 p.m. starting Jan. 24
• Creative Expressions Through Music, Tuesdays at 11:30 a.m. starting Jan. 30
• Virtual Caregiver Forums, last Tuesday of every month at 11 a.m. starting Jan. 24
• Shake It Up!, Wednesdays at 12:30 p.m. starting Jan. 26
• Mindfulness and Meditation, Thursdays at 1 p.m. starting Jan. 19
• Applications are now being accepted for our three Caregiving Classes.

These programs are free to patients/families seen at the Penn Memory Center and made possible from the philanthropic Caring Difference fund. Please consider making a donation so that we are able to continue offering support programs such as this.

If you are not affiliated with the Penn Memory Center, you are welcome to join this class/program if you make a donation of any amount to the Caring Difference fund.

Tap here to donate. 

On January 11, the Centers for Medicare and Medicaid Services (CMS) released a plan for Medicare coverage of Aduhelm (aducanumab). Aduhelm was FDA-approved in June 2021 for the treatment of Alzheimer’s disease (AD). The CMS plan is a program called Coverage with Evidence Development (CED). This evidence will be developed using a randomized controlled trial.

The CMS proposal is open to public comment for 30 days. The public can submit comments on the proposal on the CMS website.

Please join us for a virtual community discussion about this proposal at 4 p.m. Wednesday, January 19. Penn Memory Center (PMC) Co-Director Jason Karlawish, MD, and UPenn Medicare expert Allison K. Hoffman, JD, will review the proposal and its potential impact on PMC, our research participants, and our patients.

Please submit questions anytime before the event via this form.

Register for Community Discussion

If you have limited internet access, please email Terrence Casey at terrence.casey@pennmedicine.upenn.edu for more information on attending the event via telephone. This event will be recorded and uploaded to the PMC YouTube channel. 

In a recent article, Emily Largent, PhD, JD, RN, member of the Penn Program on Precision Medicine for the Brain (P3MB), argues that Alzheimer’s disease testing and results disclosure should be brought into the 21st Century Cures Act (Cures Act). Here are some key takeaways from Dr. Largent’s article:

• Tests that show either the risk of developing Alzheimer’s disease (AD) or the presence of AD pathology are becoming more frequent and are predicted to become a regular aspect of health care in the near future.
• The Cures Act requires patients to be able to receive these test results immediately and electronically, without certainty that a clinician will be there to explain the result or that the patient received educational materials about the nuances and uncertainties of AD testing.
• Patients and families can understand AD gene and biomarker test results with the appropriate education.
  • Reports of test results should use plain and easy to comprehend language, not an abundance of medical jargon.
  • Educational materials should be evidence-based and be made widely available.
  • There should be increased access to expert postdisclosure education and counseling.

Dr. Largent’s full article is in JAMA Neurology. There is a paywall.

At the Mayo Clinic’s Conference on Brain Health & Dementia, PMC Co-director Jason Karlawish, MD, was a featured speaker. Dr. Karlawish told three stories of significant figures that demonstrate the influence of politics and culture on Alzheimer’s disease research and care.