If you’re free on Saturday morning, June 1, come join us for the Kidney Walk hosted by The National Kidney Foundation. My family have registered as a team; we’re “The Lew Crew”! We’ll bring Coco our tiny dog and put on sunscreen (on us humans) and walk a beautiful route in Bishop Ranch in San Ramon. Just register to be on Team “The Lew Crew” and feel free to donate whatever amount you’d like. Details below.
I am actually also unofficially joining the San Francisco Walk on Sunday, June 9th. Let me know if you want to join me there, and we’ll meet up!
Why I Walk
In January I was in Baltimore for a CMS (Medicare) conference working to improve Kidney care. In March I was in Washington, D.C., urging Congress to pass kidney legislation. In June, I’ll join more than 85,000 walkers from across the country to raise funds to power NKF programs that make a real difference in people’s lives.
I walk to support NKF’s initiative, THE BIG ASK: THE BIG GIVE, which is looking to increase the number of kidneys for transplantation. THE BIG ASK: THE BIG GIVE’s expanded in-person trainings are held at leading transplant centers nationwide to teach kidney patients, or their advocates, how to make a “big ask” to their friends, loved ones, or community to consider making a “big give” of a life-saving living organ donation.
When I was first diagnosed with kidney disease, I told my doctor I would never want a transplant. I would never impose on anyone by taking their kidney. And even if a cadaver kidney became available, I didn’t want surgery to have it transplanted in me.
Obviously I changed my mind.
I learned about the hardships of life on dialysis. I learned about the new hope through transplant. And a crazy generous living donor made that possible for me.
On April 12th, Senator Elizabeth Warren (D-MA), Senator Susan Collins (R-ME) and Rep. Lou Correa (D-CA) with 16 other Representatives introduced a bipartisan resolution (S.Res. 162/H.Res 315) to designate April 2019 as “National Donate Life Month.”
Individuals who choose to be organ donors save lives,” said Senator Collins. “This resolution recognizes each individual who has helped to give the gift of life by supporting, promoting, and encouraging organ donation.”
This resolution recognizes the need for Americans to support increased awareness of organ donation. It lauds those who have already become living organ donors (like Skip “Superman” Donnelly) or registered to become an organ donor and acknowledges deceased donors who gave the gift of life.
Would you join me in helping Congress show our gratitude by celebrating those who have donated to give the gift of life to another individual?
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?
Support the Living Donor Protection Act of 2019
Introduce legislation to expand Medicare coverage for transplant patients
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.
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); Mayisha (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.
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.
I stayed an extra day in Washington so Marty and I could enjoy more sights. Hope to be back next year.
22° F in Baltimore is nothing compared to the colder-than-Antarctica temps in Minnesota, but for a San Francisco Bay Area girl, coming here still called for much mental muster and Zappos-shopping for the right snow boots.
I flew here Sunday for a CMS Quality Conference. As a first time attendee, I asked during a session Can you explain all the acronyms being used? So I will do the same now as I explain to you (in my talk-to-me-like-I’m-a-fifth-grader lingo) why I’m here.
CMS is the Medicare folks. It stands for Centers for Medicare and Medicaid Services. (Don’t know why it’s not CMMS). I’m here as a Patient SME (Subject Matter Expert). There are about 50 of us from across the country who’ve come to partner with CMS to improve patient care for kidney patients, especially those on dialysis.
Getting ready for the Grand Plenary Session at #CMSQualCon19.
“ I decided I would not let kidney disease beat me. I am now thriving on dialysis, thanks to all of you. “ – Precious McCowan, Patient Representative
Wait, but isn’t Medicare for seniors? Yes, but this insurance also is available to patients with Kidney Failure (or ESRD, End Stage Renal Disease). As long as someone is on dialysis, they receive some Medicare coverage. Once we are transplanted, we continue to receive Medicare for a few years.
So what happened at the conference? We talked about the importance of caregivers and how to better understand and meet their needs as well. We brainstormed ideas for a peer mentor program. We learned more about our roles as Patient SMEs as we work towards quality improvement goals for 2019. I’ve been hearing more the term “nothing for us without us”; in other words, don’t plan anything for us (patients) without our input from the beginning. The patient perspective is vital.
A “Gallery Walk” featured our profiles as people who have/ had end-stage kidney disease.
I think I’m the only Asian on the wall, and yes, I’ve been told I remind them of Constance Wu.
I’m always fascinated to see what kidney failure looks like for others. I met a father and husband who turned down transplant and chose dialysis for himself. I met a woman who’s had six transplants over many decades and she’s still advocating! I interviewed them and will feature them in a future blog so stay tuned.
The conference is over, and I’m now in New York on a post-conference vacation. I’ll update you soon on my fun adventures!
A lot of you are asking about my take on Prop 8. I am voting No for two main reasons: There’s not enough language to ensure patients will benefit, and patients in low income areas will likely suffer if Prop 8 passes.
What is Prop 8?
Prop 8 is a ballot initiative in California that seeks to limit the profit of dialysis providers to no more than 15% above service costs.
A “yes” vote supports requiring dialysis clinics to issue refunds to patients or patients’ payers for revenue above 115 percent of the average cost of dialysis treatment in California plus healthcare improvement costs, such as staff training and patient counseling. A “no” vote opposes requiring dialysis clinics to issue refunds to patients or patients’ payers for revenue above 115 percent of the average cost of dialysis treatment in California plus healthcare improvement costs.
So isn’t that a good thing? Dialysis companies make a lot of money, and why shouldn’t patients get a refund?
According to Prop 8, whatever money dialysis providers make above the margin goes back to the payer, most likely private insurance companies. Yet there’s no language in Prop 8 that outlines any oversight to make sure excess funds trickle down to benefit patients. Who’s responsible for making this happen? Over what timeframe? Who would benefit? There’s certainly room for improvement in the dialysis industry, and I think it would good for all parities to hold ongoing discussions about improving patient care at dialysis clinics. But there’s not enough detail written into the Proposition to ensure that health improvements and services will actually take place.
Secondly, while dialysis companies make a lot of money, not all individual clinics are profitable. If Prop 8 passes, it is very likely that dialysis companies would close down centers that are in the red, most often those in low-income neighborhoods. These patients would have to travel farther to find an open clinic, or seek care in the ER.
So excited today because yesterday came word of a significant win for living donors. Their jobs are now protected under the Family and Medical Leave Act (FMLA). This was one piece of several legislation we were fighting for in Washington 3 months ago! Advocacy makes a difference!
I’m especially grateful for Congresswoman Jaime Herrera Beutler (R-WA) who’s the main champion in this story. Troy Zimmerman, our Vice President of Government Relations, shares more:
Congresswoman Jaime Herrera Beutler (R-WA) worked with the National Kidney Foundation to develop language that will be included in the Committee Report to the FY2019 Appropriations Bill for the Departments of Labor (DOL), Health and Human Services, Education and Related Agencies. The provision asks DOL to give notice on its website, or in other public communications, that living donors who are qualified for FMLA are eligible for family medical leave when they donate an organ. This means that if the Department of Labor makes the requested notification, living donors who take time off for surgery and recovery will have their jobs guaranteed when they return to work.
However, while this is a significant win for transplant patients and organ donors, we need to keep pressing our Congress members to pass the Living Donor Protection (H.R. 1270). It states that insurance companies cannot discriminate against living donors by denying them or charging them more for life, disability or long-term care insurance.
Meet Chico, my three-legged friend who has been a perennial Lew Crew team member. He’s Penny’s brother. (Remember Penny from last year’s Kidney Walk? We cheered her on across the finish line). Chico is even more petite than Penny, and his mom Pat carried him most of the way at the San Francisco Kidney Walk Sunday. He still did his share of walking/hobbling though, and he can hobble fast!
Thanks to all of you who sponsored us. We raised close to $1800, a little shy of our goal, but certainly a very significant amount towards the work of the National Kidney Foundation. They are still accepting donations for another month.
On the personal front, we celebrated my son’s high school graduation last week. You know what makes me most proud? One day after school -with no prompting from me- he drove to Joaquin Elementary school to find his former teachers. Roaming the halls, he could only track down Mrs. McQueen, his first grade teacher. He then thanked her for her care those many years ago. Back then he was so shy that on the first day she thought he didn’t speak English. Now he towers over her. Isn’t that a chicken soup-y story for your soul?
I’m glad he’s not too cool for hugs ’cause I gave him a great big squeeze when he told me.