Lobbying for Research: A Survivor’s Tale

One in 50 of us has a brain aneurysm, yet vanishingly little money is invested in aneurysm research. This is why, for the past three years, I’ve joined the Brain Aneurysm Foundation to lobby on Capitol Hill for dedicated funding for brain aneurysm research.

I had a leaking brain aneurysm clipped in Boston in December 2014, and am fortunate to have made a good recovery. But, like so many other survivors, I had no idea there was an aneurysm lurking in my brain until that characteristic thunderclap headache happened.

It’s currently only possible to diagnose an aneurysm with expensive MRI or CT scans. If a simple blood or genetic test were able to predict those who are most likely to have an aneurysm, then it might be practical to get the scans done. If an aneurysm is found, the neurosurgery team could consider whether it would be wise to coil or clip the aneurysm, preventing a rupture before it happens.

We’re looking to drum up support for Ellie’s Law, which would earmark $5m of NIH funding over five years specifically for aneurysm research. In the context of the NIH’s $39bn budget for 2019, this is a minuscule amount – it’s just 0.0128 percent, or about one-eightieth of one percent, of the total. But it could make a huge difference to the scientists and clinicians who are looking for a predictive test for aneurysms.

This year, more than 130 people from 22 states gathered in Washington DC to tell our stories to senators and members of congress, and ask them to back Ellie’s Law. Split into small groups, we all had busy schedules chasing around the various office buildings around the Capitol. Most of the meetings were with the staff members who help the elected members with policy, but we did get to meet a handful of those elected members themselves.

The group was a mixture of survivors, relatives, medics and BAF staff, aided by experienced lobbyists from the DC office of law firm Arnold & Porter who generously give their time for free every year to help us. This time, my group included BAF founder (and Boston-based neurosurgeon who saved my life) Chris Ogilvy, plus a survivor from Kentucky and her husband, and another survivor from Virginia.

It’s the presence of survivors and affected family members that really strikes a chord with the people we are lobbying for support. It means that the meetings aren’t just us giving them a string of facts and saying ‘please sign this’ – they get to hear first-hand the consequences of a ruptured aneurysm. It puts a human face on the scary statistics.
That’s why I went to DC this March, and why I plan to be back again next year. Maybe one day we will be able to diagnose many more aneurysms early, and prevent the disability and death that ruptures cause. But to do that, we need the research funding that Ellie’s Law would provide. As one of the lucky ones who lived to tell the tale, it’s important for me to help raise awareness by sharing it.

Dr Sarah Houlton is a science journalist and brain aneurysm survivor