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Kidney Patient Summit 2019

I was back in Washington, D.C., earlier this month for the 6th annual Kidney Patient Summit hosted by the National Kidney Foundation (NKF). About 100 of us from nearly all 50 States, along with advocates from other kidney organizations, gathered at the Holiday Inn near the Capitol to plan and prepare for our meetings with lawmakers.

It was not unlike last year’s Summit except I felt a greater momentum coming into this year’s summit.  We had achieved some significant wins since our efforts last year, inspiring more lawmakers to take action.  In addition, we had concrete support from the Administration as well.  Secretary of Health and Human Services (HHS) Alex Azar came and spoke to us on the first day, laying out the Department’s plans to improve outcomes for kidney patients.

His father had suffered end-stage renal disease and was fortunate to ultimately receive a kidney from a living donor.   Secretary Azar knew firsthand the grueling experiences of many patients and their families.   He was preaching to the choir, and at the end of the day, I was on a mission to get a copy of his speech.  In it, he highlighted the areas where the department is focusing their efforts on kidney disease.

“Today, I want to lay out what it would look like to pay for kidney health, rather than kidney disease—and pay for Americans with kidney disease to actually get good outcomes, rather than the endless, life-consuming procedures that you all know so well.”

I felt more emboldened this year as a patient advocate because of the progress we were making, because of the Administration’s support, and because I had witnessed more so this past year the suffering and sacrifice that patients and their families endure.  Now our mission was to ask Congress to do what only Congress can do: codify into law plans to improve kidney care and appropriate more funding.

Our three asks from Congress?

  1. Support the Living Donor Protection Act of 2019
  2. Introduce legislation to expand Medicare coverage for transplant patients
  3. Fund more research and innovation in kidney care and treatment.

The team from California was a little larger this year.  We’re all volunteers, not paid lobbyists, but it is our personal stories that bring relevance and passion to our fight.

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The California Advocates

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The California team L to R: Mayisha is a living donor; Divina (transplant recipient whose kidney has lasted 28 years), me, Lisa and son Grant (my he’s grown since last year! Both have Alport Syndrome); Derek (kidney recipient and our leader); Nick (pre-dialysis); Cynthia (Nick’s mom), Mayisha (living donor)

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The California team L to R: Divina (27 year kidney recipient), me, Lisa and son Grant (Both have Alport Syndrome); Derek (kidney recipient and our leader); Cynthia (advocate and mom to Nick next to her), Nick (pre-dialysis kidney patient); Marnsha (living donor)

After a day of training, we divided into groups, mostly by states, and visited our  lawmaker’s office.  It was a “fly-in” day, meaning it was a day where most Congress members are flying back into town, so we did not expect to see our actual elected officials. But most of our meetings were held with the health legislative advisors who hold great influence on the Congress member’s health policies.

Here’s a glimpse of my day on Capitol Hill.

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The Summit concluded with a Congressional Awards Reception in the evening to honor U.S. Representative Ron Kind (D-WI) and U.S Representative Bill Posey (R-FL) for their support of legislative initiatives to help all those affected by kidney disease, including living donors.

NKF’s Kid Ambassador and kidney recipient Angelica Hale is back to join the advocacy effort.  She met with a few Congress members earlier in the day.  I got to know more of her kidney story from her mom and donor, Eva.   Lovely family.  Did you know Angelica Hale is the only contestant on America’s Got Talent to earn the Golden Buzzer twice?  That night, she belted out “Fight Song.”


Now that the Summit is over, I’m excited to see which Congress members will add their support to the kidney bill (Living Donor Protection Act).  It’s been introduced in the Senate as well this year so I’m watching both houses.   So far none from California, but I will visit my Congresswomen in the Bay Area in upcoming months to continue the conversation.  Anyone is welcome to join me.  We’re all constituents and our elected officials want to hear the issues important to us.


A little gift for the boys.fullsizeoutput_4284


I stayed an extra day in Washington so Marty and I could enjoy more sights.  Hope to be back next year.

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