Zooming into DC for a Unique Virtual Kidney Patient Summit

Instead of flying to Washington, DC, in March with other advocates for the National Kidney Foundation Kidney Patient Summit as planned pre-COVID, we Zoomed and Hopped in last week for virtual meetings on Capitol Hill. Admittedly, virtual was less of a kick than the real thing, but it was surprisingly effective in garnering cosponsors for important pieces of legislation.

I was excited to meet with members of Congress and/or their legislative staffers to share my personal story of donating to my son and to explain the importance of a few key pieces of long-overdue legislation: the federal Living Donor Protection Act (S511/HR1224), which prevents insurance companies from discriminating against donors (I’d earlier met with my state legislators about a state version); the Immunosuppressive Drug Coverage bill (S3353/HR5534), to safeguard a kidney recipient’s precious transplant by continuing coverage of antirejection meds for the life of the transplant, instead of cutting it off at 36 months for recipients not otherwise Medicare eligible.

Given that chronic kidney disease is so widespread–about 37 million Americans have it–and underdetected–the vast majority of them don’t know it yet–we’re also asking for funds for a new Kidney Risk Campaign.

“Are You the 33%?” is a simple quiz to help raise public awareness that one in three people in this country is at risk for kidney disease. Actor/advocate Wilmer Valderrama is helping to spread the word in both English and Spanish. The risk is particularly high among African Americans and Hispanics.

Perhaps the highlight of our eight meetings was the one with my long-time congressman, Rep. David Price, who has been very supportive of the kidney community. He’s been a cosponsor of the Living Donor Protection Act for a long time and just agreed to do the same for the Immuno Drug bill! If there’s an appropriations bill before year’s end, he was also receptive to supporting the Kidney Risk Campaign funds.

I learned a lot and “met” a lot of interesting, extremely dedicated people, like my joint North Carolina-Georgia teammates pictured here: Stuart Miller (a transplant recipient who led our group) and Cara McKinney (NKF’s exec director for Georgia, Alabama, and Mississippi) from Georgia; and, from NC, Michael Phillips, a transplant recipient who survived COVID (sadly, 20 of his relatives also contracted it); and Chris Rusconi, chief research officer for the Polycystic Kidney Foundation, a fellow Triangle resident.

We raced from meeting to meeting by catching a Zoom. It was hectic but very gratifying (and my feet didn’t hurt one bit!). Afterward we compared the day’s highs and lows with other advocates. It all definitely whet my appetite for repeating this experience in person someday.