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.)

4 thoughts on “My Do’s and Don’ts for Advocacy

  1. Carol, thanks for all of the great work you are doing. You are an amazing advocate! I really enjoy your posts, and have pointed a bunch of people to your blog.

    Laurie McDonald, LCSW, CCTSW | Transplant Case Manager
    UNC Center for Transplant Care
    101 Manning Drive, Chapel Hill, NC 27514
    p (984) 974-7599 | f (984) 974-6240
    laurie.mcdonald@unchealth.unc.edu
    If you are a patient, please go to http://www.myuncchart.org and set up your My UNC Chart account so that I may correspond with you confidentially. To protect your privacy, UNC Center for Transplant Care staff cannot send personal health information via email.

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