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Inside One Couple's Experimental Treatment to Battle Alzheimer's Disease

Inside One Couple's Experimental Treatment to Battle Alzheimer's Disease
From TIME - February 15, 2018

JoAnn Wooding is staring intently at the clear liquid dripping from a dark brown IV bag into her husband Peters arm. Please be the drug, please be the drug, she says. Married for more than 50 years, the Woodings are among the more than 5 million Americans who are facing Alzheimers disease, one of the most devastating diagnoses today.

But instead of accepting the slow descent into memory loss, confusion and dementia, Peterwho has the diseasecould be among the first to successfully stop that decline from happening.

Peter, 77, is one of the 2,700 people around the world who are expected to volunteer to test what researchers believe could be the first drug to halt Alzheimers. Two-thirds of the volunteers will receive the drug, and one-third will get a placebo. They wont know which one they received until they have participated for 18 months.

While there are genes that contribute to a higher risk of Alzheimers, for most people, age is the biggest risk factor for the disease. The human brain is remarkably resilient, but only up to a point. With time, connections that normally call up a memory or help remind people where they are start to get weaker. The first symptoms might be as innocuous as forgetting where you left your phone or missing an appointment. In most cases, the first memories to slip away are more recent ones. Slowly, sophisticated tasks such as organizing a trip, paying bills or driving to familiar places become more challenging. Important birthdays and milestones that you have celebrated your entire life start to slip away, and eventually you stop recognizing your loved ones.

Currently, 1 in 10 people in the U.S. over age 65 has Alzheimers. By 2050, without an effective treatment, 16 million could be affected by the disease. Worldwide, about 50 million people have dementia, most of it due to Alzheimers, and that number doubles every 20 years.

The memory-robbing brain disorder has proved vexingly hard to treat. Dr. Alois Alzheimer first described the condition in 1906, but in the more than 100 years since, scientists have not been able to develop any effective treatments. Part of the reason has to do with biology; finding and targeting something in the brain without compromising the delicate network of activities that keep us breathing, thinking and moving every day is a daunting task. Despite the fact that the market for Alzheimers drugs could reach an estimated $30 billion in the U.S. alone, drugmakers have already squandered hundreds of millions of dollars, if not billions, in chasing after an effective treatment.

There is also a stigma surrounding the disease. Surveys consistently show that people of all ages are universally afraid of developing the condition, yet with the degenerative brain disorder, unlike conditions such as cancer and heart disease, there is little public discussion about how it transforms not just patients lives but the lives of their families as well. It was not until 2012 that President Obama created the first national plan to address the disease, which set a goal of finding ways to prevent and treat Alzheimers by 2025. As a result, funding for Alzheimers research at the National Institutes of Health, for example, has more than doubled in recent years.

That shift in attention toward Alzheimers makes researchers hopeful for the first time in decades that they are finally making headway against the disease. The drug Peter is testing is designed to chip away at amyloid, the protein that builds up in the brains of people affected by Alzheimers, and break down the sticky plaques that may eventually strangle healthy nerve cells and shut down critical circuits for memory, reasoning and organizing. In early studies, aducanumab, as the experimental drug is called, shrank the plaques in the brain, and some people who took it for up to three years showed slower declines in memory and thinking skills on certain mental tests.

The Woodings are hoping that Peter sees the same benefit. Which is why JoAnn is fervently hoping that her husband is one of the fortunate ones receiving the promising medication.

Its hard to measure the cumulative effect of losing ones memory, says Peter, reflecting on how his disease has affected his life. And my memory is not completely gone, by the way. Just certain aspects of it. Retrieval of information is slower, and my reaction time and mental processing time is slower.

Both industrial designers, Peter and JoAnn ran their own design firm for nearly 40 years, creating products for the home and office as well as designing commercial and residential spaces, including converting Union Station in Providence, R.I., into a corporate headquarters. Their home in Massachusetts bears witness to their work, from the prototypes of sleek armchairs and sofas designed for Knoll to the flatware they created for Dansk in their kitchen. Peter also served as president of the Industrial Designers Society of America (IDSA), frequently lecturing abroad. And as a faculty member at Rhode Island School of Design, he tackled the issue of designing accessible furniture and appliances for people with disabilities.

But after Peter took a bad fall in the early 2000s, JoAnn began noticing changes in her husbands memory. Never known for his perfect recall, he was having trouble keeping track of deadlines for projects and what was discussed at meetings.

In the spring of 2016, they took advantage of a study in which Medicare covered the cost of brain scans of older people to check for amyloid, the protein that is the hallmark of Alzheimers. In the scans, it was undeniablePeter had Alzheimers.

It was definitely a big shock, he says. You could see it in the scans, this white cloud that covered my brain.

Putting his solution-oriented design skills to work, Peter immediately began looking for ways to be proactive about the impending cognitive decline. What do you do? Do you bundle up and fall through a manhole and lose it forever? No. Beating this thing has become the No. 1 priority for me, he says.

JoAnn read a newspaper article about the new study at Butler Hospital in Providence, where the Woodings lived at the time, and they asked to join. I felt like it was a responsibility, that if I could participate and contribute, my experience would hopefully lead to some further understanding of this disease and some potential solution, says Peter of his decision to volunteer for the study.

He agreed to receive injections of either the drug or a placebo once a month for a year and a half. After that, he is guaranteed to receive the drug for two more years. It wont be until 2020, when all the people in the study have completed their injections, that the Woodings and their doctor, Stephen Salloway, who is leading the study at Butler, will learn whether he received the drug or a dummy solution.

So far, Peter has received 16 infusions. The Woodings realize that while the odds are better than even that he has been getting the drug that could slow his disease, its also possible that they have given Alzheimers more than a years head start. I worry that he is getting the placebo, says JoAnn. I see any change in him as an indication of perhaps thats exactly whats happening. Even if he gets the drug 18 months later, he will have lost ground.

Not if I have anything to say about it, says Peter.

Even if Peter is getting the placebo, the Woodings recognize that they are fortunate to have the opportunity to test a potentially promising drug. Peter is still in the early stages of the disease, when doctors believe they have the strongest chance of at least keeping the changes in his brain from getting worse. And it turns out that the Woodings came to Butler at an opportune time. If his memory problems had shown up even a decade earlier, he would have had a paltry array of options for combatting the disease. There were no treatments then, and there were relatively few promising experimental drugs even being tested to treat Alzheimers.

In the early 2000s, research in the field had come to a near standstill. Scientists knew that amyloid, a protein made by cells in the brain, seemed to build up abnormally in the brains of people with the disease, eventually strangling nerve cells to death by cutting them off from the essential nutrients they need to survive. A highly vaunted and anticipated trial of a vaccine designed to wipe away amyloid plaques failed to produce much change in the memory and cognitive state of the people testing it in a study, and a series of other anti-amyloid drugs also seemed to do little to reverse the overpowering deposits of amyloid.

The company behind the vaccine, Elan Pharmaceuticals, refused to give up, however, and joined with Pfizer and Johnson & Johnson to develop another amyloid fighter, this one an injectable drug. The researchers tested it in people with a genetic mutation that puts them at high risk of developing Alzheimers. But as with the vaccine, the results were disappointing. In cognitive tests, the people receiving the drug did no better than those getting a placebo.

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