By Iya Bekondo-Granatella, AAKP Field Ambassador and Founder of the Iya Foundation Inc.
[June 8th – June 11th] I had the privilege of attending the 43rd Annual National Kidney Patient Meeting hosted by the American Association of Kidney Patients (AAKP) in St. Petersburg, Florida. This event is the largest kidney patient education and advocacy meeting held in the U.S. and brings together patients, caregivers, advocates, healthcare providers and researchers alike. As a newly appointed Field Ambassador of the (AAKP), this was my very first patient meeting. To say the least, it was all of sensational. Not only did I get to connect with so many other advocates, most of whom I had only interacted with online; but I also got to learn so much from the different informative and educational sessions.
Beforehand, potential attendees were given the opportunity to choose topics of interest they would like to sit in on at the various seminars and lunch with expert sessions; a program which I particularly enjoyed as it was more casual, engaging, and highly interactive. The general session presentations were also quite informative and impactful especially to me as a patient, kidney health educator and advocate.
Fortunately, I was able to attend the general session presentation by Dr. Robert Star, who talked about some of the medical advancements in the pipeline that would improve the care of kidney patients. Of particular interest to me was his mention of precision medicine to develop treatment plans for kidney patients using renal biopsies. The current approach to treatment is a one-size-fits-all approach that can be very successful for some patients but not so much for others. The innovative approach of precision medicine takes into account individual differences in people’s genes, environments, and lifestyles. It gives medical professionals the resources they need to target specific treatments of the illnesses people encounter and helps develop scientific and medical research. According to Dr. Star, a personalized approach to renal biopsy will improve patient diagnosis and ultimately their treatment option plan. I am excited about all that could become of this approach.
A launch with expert session with Dr. Star further answered a series of my questions on Acute Kidney Injury, while during another lunch with expert session, I had the opportunity of meeting Mr. Joe Karan from the National Kidney Foundation who shared with us some of the different financial resources available to assist kidney failure patients. It was quite informative.
I also learnt a lot from Dr. Lee’s presentation on our different kidney related lab tests and Mr. James Myers session on using Social Media to raise awareness. A tour of the exhibit hall introduced me to Third Kidney Inc. founder Dr. Raymond Keller Jr, DO who is in the process of developing an innovative approach to reducing the amount of time patients get to spend getting treatments on their dialysis machines. According to his idea, by substituting an hour for hour on an alternative therapy such as medical saunas, patients wouldn’t need to sit for the full current average of 4 to 5 hours getting treatment on their dialysis machine. Instead, part of that could be substituted with a sauna therapy according to Dr. Keller. Although saunas are not yet approved by the Food and Drug Administration for the treatment of advanced stages of neither kidney disease nor any other human disease, this is an idea that does sound promising and may make renal replacement therapies a bit more desirable if approved.
One of the most important and worthy take home lessons for me was getting informed about the Apolipoprotein L1 (APOL1) gene and its association with disease nephropathy in blacks and African Americans, from Vice President of the AAKP Mr. Richard Knight and seasoned advocate and AAKP Field Ambassador, Ms. Nichole Jefferson. Further research on this gene from the National Institute of Health website, taught me the following:
- APOL1 is associated with sickle cell disease nephropathy
- APOL1 gene variants associate with hypertension-attributed nephropathy and the rate of kidney function decline in African Americans
- End-stage renal disease in African Americans with lupus nephritis is associated with APOL1
- APOL1 variants associate with increased risk of CKD among African Americans
- High population frequencies of APOL1 risk variants are associated with increased prevalence of non-diabetic chronic kidney disease in the Igbo people from south-eastern Nigeria.
- APOL1 allelic variants are associated with lower age of dialysis initiation and thereby increased dialysis vintage in African and Hispanic Americans with non-diabetic end-stage kidney disease.
- APOL1 variants associate with increased risk of CKD among African Americans
- APOL1 Risk Alleles Are Associated with Exaggerated Age-Related Changes in Glomerular Number and Volume in African-American Adults: An Autopsy Study
- APOL1 Risk Variants are strongly associated with HIV-Associated Nephropathy in Black South Africans
- APOL1 variants increase risk for FSGS and HIVAN but not IgA nephropathy
Whether it was chatting with Mr. David White on his fitness journey topping 2000 pushups weekly, with Chef Oliver Hale on preparing for the upcoming Transplant Games of America, or my amazing time and conversation with 30+ years kidney survivor Mr. James Trabilsy and his partner Donette, getting to meet renown writer and kidney blogger Ms. Gail Rae-Garwood, and Mrs. Amy Staples, getting to know The Forever is tomorrow founder and lifelong kidney survivor, Mr. Scott Burton, and seasoned advocate Mr. Curtis Warfield, or just hanging out with Ms. Nieltje Gedney, Ms. Anjelica Nichol Leonard and Ms. Vanessa Evans discussing home hemodialysis, the ladies at ALL Kidney Patient Support Group, Ms. Cheryl Sage and Mrs. Janice Starling who cracked me up on being cool and connected, or a quick catch up with Mr. Adrian Miller, Ms. Glory, and Ms. Melissa Tuff, and getting inspired by Mr. Patrick Gee on his award winning work on advocacy; it was indeed a sensational feeling for me. It’s not every day you get to meet the President and Vice President of an outstanding organization like the AAKP, yet I got to and actually had a chat with Mr. Paul Conway and Mr. Richard Knight respectively.
The AAKP is indeed a Patient Centered, Patient Focused Organization and really did create a platform for attendees to gain information and advocacy skills they need to understand their condition, as well as make informed choices regarding their care. The event further provides an opportunity for attendees to learn how to become even more effective in using their voices and experiences to improve access and quality of care for kidney patients and also to influence public policy decisions; as clearly stated on their website.
Thank you so much for introducing me to this opportunity Ms. Erin Kahle, Director of Stakeholder Operations at AAKP, and it was so nice to meet you Ms. Deborah Pelaez, Marketing Communications Manager at AAKP. You all did a great job putting together a phenomenal event, and I am so glad to have been a part of it.
The best part of this entire experience was doing so with The Iya Foundation Inc. board member and self-proclaimed kidney awareness Green Queen, Ms. Wele Elangwe. Not only did we get even more inspired in the work we do with The Iya Foundation through this patient submit, but we are more motivated to take upon new challenges in patient engagement and community impact through awareness and education on chronic kidney disease and organ transplantation.
It wouldn’t be fun if it was all work and no play right? Hence, being in Florida, we were able to take advantage of the sunshine by visiting the beautiful pool at the Vinoy Renaissance Hotel where the event was hosted, and also enjoyed some sightseeing on board the Clearwater dinner boat cruise about 30miles away from the event space.
https://theiyafoundation.org/, https://aakp.org/mission/, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4562465/, http://www.thirdkidney.net/mission