Family Advocacy Day Recap

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Bent over his legal note pad, he scribbles quickly and glances up several times to catch Lauren’s eye as she tells him about a clinical trial she’s recently joined. A member of his staff sits beside him, just as focused on the 16-year old Wrentham native’s story and I’m again amazed by how at odds this experience is with what many Americans have come to expect from their Congress.

You might be more familiar with Washington DC as a place where posturing and brinksmanship take priority over finding effective solutions for constituents, but Lauren’s experience—and those of two other Boston Children’s patients, Riley and Thomas—paints a totally different picture. That’s because, this past week, the country’s capitol played host to Family Advocacy Day (FAD), an event organized by the Children’s Hospital Association (CHA).

The event is an opportunity to help put faces and names on the healthcare statistics. It’s also an event that the hospital has taken part in for the past five years, sending patients who have received complex care and their families to meet their Senators and Congresspersons. Lauren Gregoire and her mother Roberta represented Massachusetts this year, while 10-year-old Riley Cerabona and her family met with officials from Maine, and the Vincent family, including 17-year-old Thomas Vincent, spoke on behalf of New Hampshire residents.

For some, FAD is their first glimpse of Washington DC and CHA organizers work hard to make sure it’s a memorable experience, devoting the first half of the first day to a sightseeing tour of the Lincoln Memorial and the National Air and Space Museum. Later that evening, the hotel’s ballroom is transformed into a huge indoor carnival complete with ice cream stations, face painting and caricaturists, all welcome distractions from the families’ upcoming meetings.

The next day, Lauren, who suffers from Cystic Fibrosis, isn’t shy at all in her conversation with Congressman Joe Kennedy, who avidly takes notes. At this point in the day, Lauren and her mother have already met with Senators Mo Cowan and Elizabeth Warren, but if either of them is feeling the strain, they do a very good job hiding it.

The level of attention they’ve received from all three officials doesn’t quite jive with the image of jaded politicians we hear about from news anchors and pundits, but maybe that’s precisely the power of having families speak for themselves. Lauren, Riley and Thomas have conditions that require the kinds of complex care and expertise that only Boston Children’s and a handful of other hospitals are able to provide. Yet, not one of them is defined by those conditions and the personalities I—and the officials we met in DC—got a chance to see spoke volumes about what is possible when hospitals, public health agencies, and the individuals they serve work together.


~Kipaya Kapiga

Boston Children’s Hospital

 

Click here for more information about Lauren, Riley, and Thomas.

Click here for a photostream.

 

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