Aducanumab trial participant becomes advocate to help others
Bud of Oakland was diagnosed with Alzheimer’s disease in his early 50s and, as a scientist, was eager to participate in a clinical trial. As luck would have it, Bud was able to join the clinical trial for Aducanumab (Aduhelm™), which eventually became the first FDA-approved disease modifying treatment for Alzheimer’s. Now Bud and Claudia are trying to help others living with the disease by volunteering as Alzheimer’s Association® advocates.
Supporting his family
Bud was born into a family that fished for a living. Not wanting his children to have to work as hard as he did, Bud’s father encouraged all of his children to follow a path in education. With the help of his family, Bud was able to earn a degree in Neurobiology from Yale and a PhD in cognitive science from UC Berkeley.
Bud met his wife Claudia in 1986 and they married a year later. Together, they had two sons. Bud knew that as much as he enjoyed studying the way the mind works, it wasn’t going to support his family the way he would like. He switched careers and spent the next decade working in the tech industry, eventually ending up at Salesforce in 2008.
Looking back, Bud says that he started experiencing symptoms in his late 40s. However, it wasn’t until 2014, at the age of 51, that Bud and Claudia began to realize something was wrong. “We’d make a plan to do something,” said Claudia. “The next day Bud didn’t remember we’d made a plan and we’d have to discuss it again.”
At first Claudia assumed Bud was just busy with work, and the plans they were making weren’t that important. “He has always been a scatterbrain,” said Claudia. “But I realized that these were concrete things he used to be able to remember that he wasn’t remembering anymore.”
Eventually Bud noticed his memory was beginning to affect his work. In his role, Bud worked on some of the more challenging problems faced by their customers. Bud said, “I found myself looking from one monitor to the other and forgetting each piece of information along the way. I found myself unable to do the job and had to resign.”
Bud retired from Salesforce in 2016 at the age of 53.
Not taken seriously
Receiving an accurate Alzheimer’s diagnosis for people under the age of 65 is often difficult. Age or medical history can cause doctors to overlook or rule out Alzheimer’s disease. It’s not uncommon to be told that a person’s symptoms may be related to stress, menopause or depression. This can lead to misdiagnosis (sometimes multiple times) and incorrect treatment.
Because of Bud’s young age, Bud’s primary doctor was dismissive. He assumed Bud only needed a good night’s sleep to cure his memory issues. “I’m a cognitive scientist,” said Bud. “I know the difference between a sleep deficit memory issue and a serious memory issue. I needed to be tested.”
Unfortunately, Bud’s doctor wouldn’t take Bud seriously. It wasn’t until Claudia stepped in and expressed her concerns that the doctor finally listened and scheduled Bud for a test.
Participating in a clinical trial
Luckily for Bud, he was being tested at the same time that a clinical trial was looking for more participants. After being diagnosed with Alzheimer’s, Bud’s new doctor suggested that he apply to be in the trial.
Clinical trials are research studies conducted with human volunteers to determine whether treatments are safe and effective. Without clinical research and the help of participants, there can be no treatments, prevention strategies or cure for Alzheimer’s disease.
As a person who had spent many years studying the brain, Bud was eager and excited to participate in a clinical trial. “I’m a scientist and I believe in doing science to figure these things out,” said Bud.
“If there’s something that might also benefit me at the same time, that would be awesome. I wanted to be in a study that might move things forward [for Alzheimer’s disease treatments.]”
Bud enrolled in the clinical trial for Aducanumab, which would eventually become known as Aduhelm™. “I lucked out,” said Bud. “I was in the first round of people who got the highest dose that they were using in the trials. As it turned out, the highest dose was the only one the pharmaceutical manufacturers eventually justified as having a benefit.”
While Aducanumab is not a cure for Alzheimer’s disease, it is the first FDA-approved therapy to demonstrate that removing beta-amyloid, one of the hallmarks of Alzheimer’s disease, from the brain is reasonably likely to reduce cognitive and functional decline in people living with early Alzheimer’s.
A reduction in stress
While taking Aducanumab, Bud noticed that he had a reduction in anxiety. Whether this change was because of the treatment itself or just a side effect of having hope for the future, Bud and Claudia are unsure. “I spent a pretty depressing amount of time keeping track of my decline,” said Bud. “When that slows down or seems to stop for a while, my mood is better.”
Claudia agrees with Bud, “The study took a lot of our anxiety away. I feel like we’re both less stressed. Bud’s attitude is super positive.”
A new beginning
In early 2019, early data showed that Aducanumab was not an efficient treatment for Alzheimer’s disease, and the clinical trials were stopped. “It was incredibly painful and frustrating when they stopped the trial he was in.” said Claudia. “We were very positive about the drug and had a lot of good experiences on it. We felt it was helping him a lot. Now they weren’t going to have it anymore.”
However, after an evaluation of a larger dataset, it was discovered that Aducanumab was indeed delaying cognitive decline in patients with early stage Alzheimer’s or mild cognitive impairment. While the trials did resume, Bud was unable to get back into them until early 2021. Bud is currently in an Aduhelm™ continuation clinical trial at UCSF.
Finding a way to do more through advocacy
Bud and Claudia wanted to help get more research funding for treatments that could eventually become a cure for Alzheimer’s. They knew that one way to do this was to speak to their legislators. They were introduced to the advocacy program at the Alzheimer’s Association and participated in last year’s virtual California Advocacy Day.
Advocacy day is an opportunity for Californians to engage their lawmakers in supporting policies to improve research, long-term care and community support systems by sharing personal stories and cultivating a relationship with elected representatives.
“We were used to being kind of alone with this thing [Alzheimer’s disease],” said Bud. “To see so many people who care so much about what you care about makes you feel supported. Just knowing that there is a community of people who know what you’re going through and are trying to do something about it.”
Claudia found the support she didn’t know she needed from her fellow advocates. “This has put us in contact with people who are supportive and know exactly what we’re dealing with,” said Claudia. “What was surprising was that occasionally someone would mention a resource I wasn’t aware of and that has been really helpful for me.
“It feels good to be doing whatever we are able to do to help this organization. I wasn’t aware of how important the work the Alzheimer’s Association does until I started doing this work. This organization is doing a lot of stuff to move this issue. If you are living with Alzheimer’s disease and you want to make a change in the world, advocacy is a great thing to get involved in.”
Share your personal story and help the Alzheimer’s Association work towards a world without Alzheimer’s and all other dementia®. Become an advocate today and join us on March 3 and 4 for this year’s virtual California Advocacy Days. Registration closes on January 28.
Interested in participating in a clinical trial? Sign up for TrialMatch which connects individuals living with Alzheimer’s, caregivers and healthy volunteers to clinical trials that may advance Alzheimer’s research.