Cutting Age Profile: George Vradenburg, Chairman and Co-Founder, US Against Alzheimer’s
George Vradenburg is a man on a mission. He's applying his experience built from decades in the media and technology space, together with a bulging rolodex and his personal capital, to join the fight to end against Alzheimer's. His leadership non-profit USAgainstAlzheimer's launched a new Global CEO Initiative on Alzheimer’s recently, and I spoke to him about why he started it, and what he hoped to achieve.
[caption id="attachment_4144" align="alignleft" width="200"] George Vradenburg.
George is a venture philanthropist - a new breed of problem solvers who focus their considerable resources to change the course of history in a different field from their own. People who’ve caught the bug range from Bill Gates, Michael J. Fox and Michael Milken (whose Faster Cures event is a watering hole for the movement) to individual people afflicted by disease, focused on finding a cure for themselves and their families (this is how I first became exposed to it). These innovators bring new ideas, energy and resources to thorny medical problems, and generally find themselves butting up against the slow pace of change of the status quo. This would seem to be very true in George’s case.
What is USAgainstAlzheimer’s?
We are a community of people who have been touched by Alzheimer’s disease and are united in our frustration at the broken status quo. We are mobilizing individuals to demand transformative change from political, business and civic leaders to achieve the goal of ending Alzheimer’s by 2020. We are set up as 501c3 and 501c4 organizations, and a PAC [political action committee], and are launching a global network of subgroups such as ResearchersAgainstAlzheimer’s as well as initiatives for Women, African Americans and Hispanics.
How did you become interested in the topic?
My wife's mother was affected by Alzheimer's and died in 1992 and living through that painful and frustrating experience with her care set me on this path to find an alternative so people don’t have to experience that. My wife turned her experience into a play that went off-Broadway, and then we put on a national fund-raising gala in Washington that ran for eight years, and now this.
How did you get started?
I have a background in corporate America - I was general counsel of CBS, an EVP at Fox and worked with Steve Case at AOL and 'retired' in 2003, moving to civic and philanthropic efforts. I first set up an Alzheimer's Study group with Newt Gingrich, Sandra Day O’Connor, Harold Varmus and others in 2006 and then shortly thereafter formed a PAC to channel money and influence towards Alzheimer's work. We initially made a commitment to stop the disease by 2020, although the Obama Administration’s Alzheimer’s Action Plan is now targeting 2025.
How did you decide on the approach you’ve taken?
There are four reasons that we took this approach. First, the overall movement lacked a sense of passion and urgency. People were doing 'business as usual' and that's not getting the results fast enough. Second, there is a lack of what I call an ‘operating theory' about how all the players should work in collaboration with each other, and with the individuals who have a stake and assuring that there was a goal and vector to their collaboration. Traditional players don't have a commitment or need to collaborate and integrate. In a sense we're Facebook and the Alzheimer's Association is Microsoft, both essential, but they're vertically integrated and our model is networked and collaborative. They get their strength through their authoritativeness and resources; we get our strength from the edge; we're providing an inclusive model compared to many of the other groups that are more 'organization centric'.
Third, there is a lack of specific goals for change. In order to stop this disease we need agreed milestones for federal government and the industry that breaks the problem down and holds stakeholders accountable - just like we would do in the business world.
And finally, none of the organizations operating today are global in character, whereas we find that to be fundamentally important. Our first launch [March 5] was at the European Parliament in Brussels, and we're planning a US launch in May and one in Asia coming this fall.
What is the landscape for funding currently?
In aggregate the NIH is spending about $30bn, while the private sector is spending about $50bn on medical research and development, with the US providing the majority of the research into diseases that affect the whole world. The federal government announced the National Alzheimer's Plan last year, with the goal of finding effective ways to prevent and treat the disease by 2025. Both in a political and advocacy role, as well as a member of the Advisory Council to HHS, I was in the middle of that work. However, overall we're seeing a decline in resources being spent in the US on this topic - both the government and business are cutting back as evidenced by flat-to-declining spending over the last decade as well as the over $2B hit from the recent sequester. The President’s $100M commitment to the BRAIN project is a long-term technology and tool development initiative with little to no relationship to the development of patient-centric applications.. In the past, business has invested in trials and drug development and the government has invested in basic science. The business community does not really invest in basic science anymore for diseases, since the lead-time is so long – it takes decades to get a new drug to the market. On the bright side, the new NCATS (part of NIH) is moving to bridge the gap to connect basic science with translational discoveries.
How are you working with existing Alzheimer's groups?
We share a common mission with all Alzheimer’s-serving organizations; we co-convene 57 such organizations in a coalition called Leaders Engaged in Alzheimer’s Disease; and Harry Johns [President and CEO of Alzheimer's Association] and I work closely together on [HHS Secretary] Sibelius' Advisory Council on Alzheimer's, even with our different operating approaches.
What are some of your short-term priorities?
We need more pre-competitive collaboration among drug developers. It’s been shown that over 50% of the billions of dollars of investments in clinical trials on Alzheimer’s is wasted, as they are doing things that have already been previously shown to fail. It now takes 13 years and more than $1bn to get a new drug to the market, so to meet our targets we need to focus on accelerating clinical trial processes, including, importantly, minorities who are generally underrepresented in those trials, increasing pre-competitive data sharing between companies and developing better predictors – ‘bio-markers’ – to identify those at risk for the disease so treatments can be administered before too much damage to the brain has occurred.
Are there similarities / differences with the war on HIV/AIDS?
I wasn't personally involved with HIV/AIDS, but at least anecdotally there are similarities, since that movement brought the entire globe together with passion, commitment and a common goal. In that case, the FDA accelerated the approval process, enabling companies to bring drugs to market as fast as possible, which made it a lot cheaper for the industry – something we are working with Congress and the FDA to do with Alzheimer’s. A major difference is that that community got pretty 'ugly' - they raised visibility and urgency of problem with aggressive public actions, and were effective advocates for themselves. Those with AIDS people were dying rapidly - it was more noticeable and drove a sense of desparation. This is generally not the case with victims of Alzheimer's - they lose their memory and ability to do their ADLs [activities of daily living] slowly and almost invisibly, so they become socially isolated, their families are sucked into that isolation and neither the person with Alzheimer’s nor their caregivers have the energy or will to engage in general. So, those with the disease not capable of lobbying to the same extent. And their caregivers are exhausted, and not as effective advocates as those in the HIV/AIDS movement.
Further, I think there are also still ageist attitudes against older people - some think, "they've lived a good life, everyone’s got to die". However, we're seeing this change slowly as we're able to detect the origins of the disease earlier and earlier, in people in their 40’s and 50’s – so, I believe, Alzheimer’s won't be seen as just a disease of old age, but of middle age. And, at the same time, as baby boomers increasingly see their parents going through the disease and having to provide them financial and caregiving support, they increasingly want to make sure their children won’t have to do that for them.
What impact have you had so far, and what progress are you seeing?
We'll measure ourselves in part by the money committed to Alzheimer’s research here and abroad, and in part by the movement created to stop the disease and to support the families experiencing the disease. Obama is proposing additional funding, which is welcome, and Nancy Pelosi appointed me to a new Long Term Care initiative, which is tasked with making policy recommendations on managing the crisis in long term care. Congress has appropriated money to establish special programs for veterans with PTSD, who it sees as getting Alzheimer’s to a much greater extent. Private and public money is being used in three different prevention trials of drugs in populations before they have overt dementia, including some exciting work in Arizona (Banner Health), St. Louis (Washington University) and through Harvard. There is lots happening already, and more to happen in the coming months and years.
What more should the FDA be doing?
Current FDA guidelines around drug administration are based on functional decline, but this is generally too late to make a difference. Very recently, the FDA is signally that they will adjust their standards to approve safe and effective drugs at an earlier stage. Biomarkers are particularly important, since with them it is possible to see which groups of people benefit the most from new drugs, as well as see what markers are predictive of decline. Also, we need to make it easier for people to get assistive products and services in the market that improve the quality of life for those needing long term care.
Where can technology and entrepreneurs play a role?
There’s a big role in the future for technology to provide assistance and improving the quality of life, with both passive and active monitoring. Skype is already in use to reduce social isolation, and we hope that the FDA will continue to exert a light regulatory touch when it comes to new innovations such as mobile apps.