Our Lives are the Data

Dear Dr. Oz,

We are concerned about persistent claims from media commentators and leaders in government that new anti-amyloid Alzheimer’s treatments do not work or are too dangerous to justify broader access.

We understand the skepticism. Many of these critics have endured decades of disappointment in Alzheimer’s research or watched loved ones decline while they were offered false hope.

But we — patients who were diagnosed early enough to benefit from new anti-amyloid treatments — represent a new era of progress in Alzheimer’s care. Our lives are the data points, showing that these treatments can slow progression and add meaningful time.

Like millions of Americans, we followed expert guidelines to reduce the risk of cognitive decline: exercised regularly, followed healthy diets, stayed mentally and socially active, and built lives around serving our families and communities.

Have you benefited from early detection and treatment?

And still, Alzheimer’s came for us.

We are grateful for your leadership on disease prevention; it is a critical piece of the fight against Alzheimer’s. And yet, lifestyle measures alone did not prevent our decline.

Each of us was diagnosed early enough for one of the new anti-amyloid treatments to become an option. These treatments work best when initiated early. We knew they were not cures, but rather an opportunity to slow the disease enough to preserve the moments, independence, and relationships that make life meaningful.

For us, treatment has been a lifeline.

Brent Beasley, a retired internal medicine physician, went from losing control of his daily routine to once again serving as a deacon at his church and teaching medical students about compassionate bedside care.

Lori Baetz, a retired engineering technician, went from getting lost in her own neighborhood to returning to her daily walks and routines with confidence and independence.

Kathi Rigby, a mother, grandmother and advocate, has spoken openly about how treatment gave her more time to continue serving her community, making memories with her family, and advocating for other patients rather than surrendering to the disease.

Ralph Carmona, a retired community and corporate sector advocate, has run five marathons since his diagnosis in 2015 and treatment in a clinical trial. He presently serves on advisory boards and engages in public outreach for Alzheimer’s research and financial support.

Norm Enriquez, a retired researcher, executive and academic, spotted the signs early and enrolled in a clinical trial. Today he is lucid and his condition is stable. He plays golf, studies French, and treasures the time he spends with family and friends.

Mary Ellen Buckbee, a retired civil town manager, was diagnosed at 58 years old. Treatment has given her the chance to enjoy every day as a gift, travel with her husband, and spend more time with her grandchildren.

Mike Zuendel, an active businessman and founder of a non-profit to promote early detection, was diagnosed six years ago with mild cognitive impairment. After three years of treatment, Mike’s physician tells him he is cognitively normal. He has spoken to thousands of people ranging from fundraising events to scientific research.

Luke Davis retired from his law practice after his diagnosis at age 68. Early detection and treatment allowed him to live an active and fulfilling life with family, friends, church, and community. Luke is “living with Alzheimer's, not dying from it.”

Michael Blumenthal, a prolific life-long entrepreneur, credits treatment with giving him his life back. Now 85, Michael is physically and mentally strong, completing a 1.5-mile walk, 25 pushups, and 35 sit-ups every day. He drives independently, frequents the gym, and pours energy into his loved ones.

Each of us knows more people who have benefited from early diagnosis and treatment.

Alzheimer’s remains a devastating disease that requires more research to improve our understanding of why these medicines slow progression, how they can be improved, and what other breakthroughs may still lie ahead. But early diagnosis is a gift. It gives patients the chance to pursue lifestyle interventions, plan for the future, participate in clinical research, and potentially benefit from treatment before irreversible cognitive decline has occurred.

To change the trajectory of Alzheimer’s disease for future generations, early diagnosis must become a national priority. Patients deserve the chance to learn what is happening while they still have time to act.

That means expanding access to blood tests that can help identify Alzheimer’s disease earlier and more accurately. It means empowering primary-care doctors — the clinicians many Americans see most frequently — to recognize cognitive impairment sooner and guide families through treatment and lifestyle options. It means supporting caregivers so patients can remain at home, engaged, and independent for as long as possible.

A brighter future would also require ensuring that patients who are good candidates for these treatments can pursue them without burdensome Medicare administrative policies and private insurance denials that block access.

Dr. Oz, we are encouraged by your focus on prevention, chronic disease, and helping Americans live healthier lives. We hope you will help lead the country toward an Alzheimer’s care system centered on earlier diagnosis, patient choice, and preserving quality of life for as long as possible.

Better tools to fight Alzheimer’s disease are finally here. We ask that current and future patients have the opportunity to use them.

Sincerely,
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Brent Beasley
Kansas City, Missouri
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Kathi Rigby
Anaheim, California and Summerfield, Florida
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Lori Baetz
Haslett, Michigan
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Ralph Carmona
Portland, Maine

Mary Ellen Buckbee
Richmond, Virginia

Mike Zuendel
West Des Moines, Iowa
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Norm Enriquez
Peoria, Arizona
‍ ‍
Luke Davis
Dallas, Texas

Michael Blumenthal
Overland Park, Kansas
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Don Trevillian
Grand Blanc, Michigan
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Donna Matelske
Lansing, Michigan