My Do’s and Don’ts for Advocacy

Had a very full–and rewarding–day of meetings with congressional staffers and fellow National Kidney Foundation advocates last week as part of NKF’s Virtual Kidney Patient Summit, which drew nearly 250 advocates. We shared our personal connections to kidney disease and briefly outlined kidney-related legislative priorities. My group’s first meeting of the day was with Nora Blalock, legislative director to my Congressman, Rep. David Price: a long-time supporter of the kidney community. He’s going to cosponsor the Living Donor Protection Act once again!

Make a Connection

Nora, whom I’d met when I was part of another group at the first Summit in September, recalled my sharing my story of donating to my son in 2006. She was kind, engaged, and knowledgeable. Rep. Price had joined our Zoom that day in September and was very supportive of the kidney-related legislation we discussed. So, going into this meeting, I already knew that his legislative director would be receptive to our cause and I was more at ease.

Speak from the Heart

I knew that our other meetings might not be quite as easy, but I was hopeful. I guess I was more at ease participating in this Summit than I was in September. Example: In another meeting for this Summit, I found myself saying that supporting the Living Donor Protection Act was “really a no-brainer.” Probably not the most diplomatic approach, but the staffer got my point. I’d abandoned my script of talking points and just started speaking from the heart. We’re trying so hard to encourage people to consider being living donors, I said, shouldn’t we start by not discouraging them by throwing obstacles in their way? For one thing, we need to make sure that insurers can’t turn down or overcharge donors just for having one kidney. And we need to write into the law that donors may use Family and Medical Leave time for donation (commonly done in practice, fortunately). Note that that’s unpaid leave. Isn’t that the very least we can do–simply protect the donor’s job–while they’re out saving someone’s life?

Try to Give Examples

I pointed out that at 72 and healthy (with kidney function that would be enviable for someone with two kidneys), I could be turned down for life insurance tomorrow. Besides the Living Donor Protection Act, we were also there to generate support for expanding access to home dialysis. More than half a million people in the United States receive dialysis, and the majority of them go to a center for it, usually three times a week. For many, if not most, that’s their clear preference. However, thousands of those kidney patients live far from the nearest dialysis center and have to drive hours round trip for each session. Many such patients and their families might well want to consider doing dialysis at home. The brand-new legislation in question, not yet introduced, is called the CARE (Covering All Reasonable Expenses) for Home Dialysis Act. It would provide both financial and logistical support to make home dialysis more feasible for more people.

Use Simple Logic

Finally, fewer people would need home dialysis–or dialysis at all–if kidney failure were prevented more often rather than treated. Increased public awareness, more medical research, early detection, and early treatment are the obvious answers, and you can probably guess the key to all of them: increased funding. Chronic kidney disease research is vastly underfunded, particularly when you consider that the disease affects about 10% of the population–way more than, say, breast cancer or prostate cancer, both of which receive more in research funding.

We were asking for the lawmakers’ support for increased funds because prevention and early treatment not only save lives–they save money for Medicare. In honor of National Kidney Month (March), please contact your representatives and senators and ask them to support these important initiatives.

Hey, What about the Don’ts?

Don’t be rude. Don’t be nervous. Don’t try to be polished–just be yourself.

And maybe try not to use terms like “no-brainer.” Between now and my next time out, I’ll be looking for a synonym that’s a bit more diplomatic but just as clear. (If I don’t find one, I may just stick with no-brainer.)

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.

Here I am meeting with Rep. David Price, his legislative director, Nora Blalock–thank you both!–and my fellow NKF advocates.

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.