World Alzheimer's Day is Tuesday, September 21, and a group of Alzheimer's disease researchers who also happen to be cyclists, will be presenting a petition to lawmakers on Capitol Hill, urging them to finally make Alzheimer's disease a national priority.
This is what the Alzheimer's Breakthrough Ride is all about. The group started a tag-team relay in San Francisco on July 17. When the last rider finishes in Washington, DC, on Tuesday, more than 55 riders will have traveled approximately 4,500 miles, zigzagging across the country. There, they will present to Congress more than 50,000 signatures they collected while making multiple stops across the US. (The petition, in fact, currently has more than 106,000 signatures. You can add your name to the list by clicking here.)
Here's why you should:
Harry Johns, President and CEO of the Alzheimer's Association and cyclist in the Alzheimer's Breakthrough Ride says: "[to] correct the chronic underinvestment in Alzheimer research and demand a strategic national plan from our federal government."
The Alzheimer's Breakthrough Ride was originally conceived by Alzheimer's disease researcher Bruce Lamb, PhD, an Associate Staff Scientist in the Department of Neurosciences at the Lerner Research Institute of the Cleveland Clinic, as well as Associate Professor in the Department of Molecular Medicine at the Cleveland Clinic Lerner College of Medicine and in the Departments of Neurosciences and Genetics at Case Western Reserve University. During a casual bike ride of his own last summer, Dr. Lamb pondered the difficulties in getting adequate federal funding for Alzheimer research and became convinced that researchers needed to do even more to fight the disease.
He was kind enough to answer a few questions I had about the ride.
Meredith: What inspired the idea for the bike ride? Was there a turning point or singular moment - something that touched a nerve or emotion?
BRUCE: It was a warm, humid, Sunday morning last summer in Cleveland and I decided to go on my usual 30 mile bike ride through the Chagrin River Valley. As I started up the first major hill of the ride, my legs burned, my heart pounded and my head ached with indecision about what could be done to bring attention to this critical and unmet need. About half way up the hill, I wasn’t sure I would make it to the top. I finally stood up, slowed down, weaved my way from side to side and inched my way upwards through the steepest grades of the hill. As I reached the top, I realized that a different approach was needed to bring attention and funds to Alzheimer’s disease research, something that involved researchers from across the country united in their commitment to fighting the disease.*
I had just returned from reviewing Alzheimer's disease research grants for the National Institute on Health and felt increasingly perplexed and concerned regarding the funding for Alzheimer's disease research through the National Institute on Aging (NIA). The percentile of Alzheimer's grants being funded was declining and in addition, all grants funded were subjected to an 18% across the board cut. Because of this, most Alzheimer's disease research laboratories were forced to contract in size and some research labs were forced to close all together. Even worse, this meant that critical research that could provide new insights into disease mechanisms and potential therapies for the disease would not be conducted.
While researchers frequently complain about funding rates, grant and manuscript reviews and bureaucratic roadblocks to conducting research, rarely do we make the time and effort to raise public awareness of research and advocate for increases in funding. Now is the time, I realized through my heavy, labored breathing, to step up and ride the extra mile and climb the next hill. What if Alzheimer's researchers from across the country could unite and ride their bikes, from the west coast to the east coast through small towns and big cities, along the oceans and over mountains, reaching out to as many people as possible and finally arriving at the Capitol. Along the way, researchers could convince Americans of the vital role research must play in fighting Alzheimer's disease.
Meredith: What was the initial reaction of the doctors you enlisted - or who enlisted themselves to ride?
BRUCE: The response of the riders was as varied as the reasons for riding. Some riders welcomed the idea and immediately signed up. Some of these riders had very personal reasons for riding, including some with family members that had Alzheimer's disease. Some riders are incredible athletes and viewed this as an incredible way to train and participate. And even others dusted off their old bicycles that they hadn't ridden in years to train and be involved. Some were concerned about the weather (particularly Texas in August!), other were concerned about the traffic. Some needed a bit of hand holding, while others have wanted to sign up to ride additional segments.
The goal of the ride is to "raise awareness for the Alzheimer's Breakthrough Act and other legislation to make Alzheimer's a national priority." In making it a national priority, what would that look like on a macro level? Now, what would it look like on a micro level?
Meredith: What is most lacking in legislation today?
BRUCE: The Breakthrough Ride has multiple goals.
Legislation: The first is to get signatures in support of three pieces of legislation currently before congress. This includes the National Alzheimer's Project Act, that will establish an office that will develop a national strategy to combat Alzheimer's disease (something our country is surprisingly lacking!) and the Alzheimer's Breakthrough Act, which will raise research funding from the current level of $465 million/year (by comparison the federal government currently spends $6 billion/year on cancer research, $3 billion/year on HIV/AIDS research, and the current estimated cost of caring for individuals with Alzheimer's disease is $172 billion/year) to $2 billion/year. This will enable critical research that is currently not being funded to be conducted.
Both of these initiatives were recommended by the Alzheimer's Study Group, a bi-partisan panel formed to make recommendations regarding America's response to Alzheimer's disease. The third piece of legislation focuses on support for the care and caregivers. While a great deal has been made of the passage of the recent health care reform bill, this bill will not control the anticipated increases in costs of Alzheimer's disease (to $1 trillion by 2050) that will likely bankrupt both Medicare and Medicaid. The country needs action on this legislation!
Awareness: We hope to build awareness about the disease throughout the country. Often times it seems that those with Alzheimer's disease and their families are forgotten and don't have a voice. There continues to be a stigma associated with the disease that makes dealing with the disease even more difficult. While I don't think the Breakthrough Ride will solve this issue, perhaps it will have some small effect in bringing to light the magnitude of this issue for our society. One of the most enlightening (and moving) parts of this process has been to read the thousands of comments to the riders on the web site from those impacted by Alzheimer's disease. It is clear that we are now riding for much more than the signatures for the petition.
Meredith: What is most misunderstood about Alzheimer's-and what families can do about it?
BRUCE: There are a couple of misconceptions about Alzheimer's disease. First, the disease is incredibly common. It is estimated that upwards of 40-50% of individuals above the age of 85 are at some stage of the disease. Second, there are no clear links between aluminum exposure and Alzheimer's disease. I think one of the best things families can do is to make their voices heard.
Individuals with Alzheimer's disease often can't speak for themselves, but families/friends and colleagues can speak up and tell their stories, sign the petition, contact their representatives, get involved in the cause and help find a cure for the disease.