On April 12^th, I was very excited to participate in a summit focused on improving medical outcomes for veterans through more efficient clinical trials. This summit was put on by the National Association of Veterans’ Research and Education Foundation (NAVREF) and hosted at Deloitte in Arlington, Virginia. We were honored to sponsor this event alongside our friends at LUNGevity and our partners at Cohen Veterans Bioscience, and I was so grateful to have the opportunity to address a room full of experts who are committed to prioritizing the health of our veterans.

We know that clinical trials offer the only path to regulatory approval of treatments to combat disease. Thus far, insufficient participation in clinical trials is hindering our ability to find a cure for Alzheimer’s disease – and veterans are at a higher risk for Alzheimer’s than their civilian counterparts. But what does that really mean? It means that we cannot find a cure for this disease without your help.

One of our key missions at VeteransAgainstAlzheimer’s is to increase veteran participation in clinical trials. While we were so pleased that this group of experts came together to identify ways that the public and private sectors can collaborate to drive high-quality clinical trials for veterans, we still need veterans to participate. The candid discussions at Thursday’s convening were as much about defining the problems associated with clinical trials within the U.S. Department of Veterans Affairs (VA) as they were about overcoming relevant obstacles.

What was talked about at the summit?

So many things! What I found particularly interesting were the discussions around initiating new partnerships in both the private and public sectors, creating a timely, transparent process, and increasing diversity and participation. While the event was not geared toward any specific disease, UsAgainstAlzheimer’s Founder, George Vradenburg, and Chief of Staff, Jason Resendez, attended the event to ensure that the specific challenges were addressed with respect to Alzheimer’s Disease. As Jason noted, it is so important that in addition to focusing on those living with Alzheimer’s disease, clinical trials also consider the role of the caregiver and that minorities are recruited more heavily into clinical trials. To date, African Americans and Latinos have not been as willing to participate in clinical trials as their White counterparts.

What’s the biggest problem?

As with most things: time and organization. The VA has been working hard to initiate clinical trials, but it’s hard to get things done quickly - especially with a disease like Alzheimer’s where time is of the absolute essence. Having to wait 2 years to get into a clinical trial just isn’t an option most families have. Transparency, having a clear point of contact within VA hospitals for clinical trials, and making sure that veterans have access to trials even if they are outside of the VA are great places to start.

Another important issue is general awareness. No one can say for sure that military service causes Alzheimer’s Disease. What we can say is that head injuries and post-traumatic stress increase the likelihood of developing Alzheimer’s Disease later in life, and that veterans experience head injuries and post-traumatic stress more than civilians do. Veterans should ask their physicians about brain health, if cognitive screening is appropriate for them, and if there are clinical trials in the local area for which they are qualified.

UsAgainstAlzheimer’s is surveying members to find out what matters most to caregivers and those with the disease. If you or a loved one is living with Alzheimer’s disease, you can help us better understand what you need by signing up for our A-LIST.

How can we overcome these obstacles to efficient clinical trials within the VA?

Much of the summit was interactive and dedicated to problem solving. Dr. Rachel Ramoni, Chief Research and Development Officer at the VA, led the team of experts in constructive discussions on how to remove barriers to high quality clinical trials for veterans. Clinical standards seemed to be highest on the wish-list of modifications that need to be made to the VA system to facilitate efficient trials. A consistent point of entry into the VA and a common set of performance metrics to evaluate trial success are essential as well.

In addition to the changes that must be made at the VA to enhance clinical trial efficiency, there are also goals that should be pursued in the spirit of improving recruitment and external interest in VA clinical trials. We are going to work on building trusting relationships with industry partners, increasing diversity of clinical trial participants, and ensuring that sensitive data are not just secure, but anonymized and open sourced. We want to make and keep partnerships that will weave together scientific prowess, caregiver sensitivities, and military precision.

What are the next steps that will ensure that the VA transforms to accommodate better clinical trials?

The VA is committed to significantly increasing the volume and efficiency of VA clinical trials within a two-year time frame, during which it will work to increase veteran access to non-VA clinical trials. Monthly progress reports will be produced over the next two years to track headway and to enable adjustments to strategies, which is critical in a dynamic clinical trial environment.

More immediately, in light of this NAVREF Stakeholder Summit, specific deliverables will be developed to help capture the momentum of the meeting - the first of which is a summary report of the meeting that includes steps for initiating partnered clinical trials, key design factors and requirements, and best practices. A draft design map to enable the VA to efficiently initiate industry-sponsored clinical trials and informational materials on how to conduct these trials, will also be created following the meeting, which will be distributed to stakeholders.

I had the opportunity to speak to the group of distinguished veterans’ health experts about my dedication to the veteran community and to tell them the story of how Alzheimer’s Disease has affected my military family. I re-emphasized the importance of involving the veteran community in clinical trials.

We will find a cure for Alzheimer’s Disease; the only question is when. #WeWontForget to make our veterans a priority no matter how long ago they served.

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