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Welcome to KD GO Conversations 
in Nephrology. 

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This episode, titled Screening 
and Early Detection Patient and 

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Clinician Perspectives is 
provided by KD GO and supported 

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by Vertex. 
Here's your host, Doctor Kirk 

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Campbell. 
Hello and welcome to KD Go 

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Conversations in Nephrology. 
I'm Doctor Kirk Campbell, Chief 

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of the Renal Division at the 
University of Pennsylvania. 

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Joining me to discuss April 1 
screening and early detection 

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are two incredibly knowledgeable
guests. 

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We'll have the patient and 
clinician perspectives from Mr. 

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Joshua Albright and Doctor 
Titilayo Illori. 

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Joshua Albright is a kidney 
health advocate, international 

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public speaker and student at 
Georgia State University who's 

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living with April One kidney 
disease. 

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He's an advocate for Nest Care 
Kidney International and brand 

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ambassador for the American 
Kidney Fund. 

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Josh has received numerous 
awards for his impact on kidney 

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health. 
Doctor Laurie is an assistant 

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professor of medicine, 
nephrologist, and clinical 

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researcher at Boston Medical 
Center at Boston University. 

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She's focused on epidemiology 
and modifiers of April 1 kidney 

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disease and the cure of patients
with April One kidney disease. 

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Welcome to you both. 
Thank you very much, Kirk. 

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Thank you Kirk for introducing 
me. 

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Appreciate you guys for having 
us. 

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Great, great. 
So let's begin on discussion 

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with the general awareness 
around the significant public 

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health issue. 
What should patients, families 

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and the wider community know 
about a PO1 kidney disease? 

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Josh, let's start with you. 
I think first thing to mention 

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is that I feel like it's just 
something that not a lot of 

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people even understand what APO 
one is. 

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Before I was diagnosed I was not
familiar with it at all. 

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No one in my entire family was 
also familiar with the term as 

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well. 
Or even be exposed to the 

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information of how so many 
African American people or 

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people W African descent are 
susceptible to contracting APO 

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when they're having the genetic 
variation. 

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And I think it answers a lot of 
questions that we see in the 

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disparities with the kidney 
disease issues. 

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But it's just not a lot of 
information for people to 

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understand as to why sometimes 
these kidney diseases and these 

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health issues are more prominent
in our communities. 

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And I think there's more common 
conversations should be 

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normalized so that there's more 
information and understanding 

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between people who are more 
likely to diagnose APO one 

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kidney disease. 
Yeah, great perspective. 

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And after Lori? 
Thanks for that question, Kirk. 

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So a paper by one of our 
colleagues, Dr. MU KJ really 

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encapsulates the answer. 
And here, community members were

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interviewed about APOL One. 
And the title of the paper is 

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really the answer to your 
question. 

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They said, why are you just now 
telling us about this? 

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And that reaction really 
captures what I've seen 

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clinically in my research and in
community engagement, discussing

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with patients and with community
members. 

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Their response is often the 
same. 

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Why don't people affected know 
about this disease? 

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Why are we not talking about 
this at family dinners, at 

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Thanksgiving and in everyday 
conversation? 

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Why isn't this being passed down
for Matrix and Patriots of our 

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families? 
People want to know how do I get

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a Pol One disease? 
How can I pass it on to my 

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offspring? 
How can I be tested and what can

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I do if I have this disease? 
Yeah. 

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Thanks so much for that. 
So we know that access to 

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testing is quite variable around
the world. 

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Doctor Laurie, what is the 
overall availability for testing

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in low resource and high 
resource settings? 

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So when it comes to APOL 1, 
testing, access really depends 

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on where you are. 
In high resource setting, 

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testing has become more 
available, but it's still not 

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routine. 
It often depends on whether your

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doctor knows about it, whether 
your hospital offers it, or if 

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your insurance will cover it. 
But in your resource setting, 

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the picture is very different. 
There is little or no access to 

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genetic testing outside of 
research studies or charity 

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programs. 
And even though the burden of 

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disease is high in this 
community, so many people do not

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have access to testing. 
And This is why testing matters,

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because the people most at risk 
may never have the opportunity 

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to be tested. 
We need to think of not just 

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making testing available or 
making sure that the right 

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support and follow up care is in
place so that the results are 

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meaningful and fair. 
If you're just tuning in, you're

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listening to the KDO podcast on 
April 1, screening and early 

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detection, Patient and Clinician
perspectives. 

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I'm Doctor Kurt Campbell. 
I'm speaking with Doctor Titi 

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Lori and Mr. Joshua Albright. 
So who needs to be tested and 

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what is the optimal time for 
testing Tiller? 

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So there's no gold standard for 
who should be tested for April 1

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kidney disease. 
But there's always a suggestion 

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for testing. 
And interestingly, we really do 

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need to consider pros and cons 
of testing. 

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I think one big challenge is 
that right now testing may not 

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have any clear actionable 
management steps, and therein 

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lies the big challenge of 
testing. 

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And so although there's 
insufficient evidence for 

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testing at the population level,
testing has been associated with

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greater blood pressure 
reduction, increased screening 

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for kidney disease and self 
reported behavior changes. 

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We may want to consider testing 
in the following scenarios as 

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clinician. 
One where counselling is 

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available. 2 when the suspected 
risk of APL 1 variance in an 

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individual with kidney disease, 
if it's a potential living 

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donor, if it's a person with 
relatives with APL. 1 High risk 

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if where chronic kidney disease 
care and screening are 

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available, where testing may be 
able to alleviate anxiety and 

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help in reproduction decision 
making and in at risk 

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populations, individuals of 
African ancestry or in a highly 

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admixed population. 
And finally, of course, if 

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there's no harm in testing the 
individual. 

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Thanks, Doctor. 
Laurie, can you also comment on 

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using a Pole 1 testing for 
precision based care delivery 

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and risk stratification? 
That's a fantastic question Kirk

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April 1, testing is emerging as 
a powerful tool for personalized

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kidney care, especially in 
people of recent African 

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ancestry who carry 2 copies or 
the high risk variant. 

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It helps identify those at 
greater risk for rapidly 

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progressive non diabetic kidney 
disease and will allow for more 

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tailored monitoring, treatment 
and counselling. 

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In precision medicine, knowing a
patient's APL One status can 

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help us refine prognosis, guide 
earlier intervention and 

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informed decisions around kidney
transplantation. 

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For donors, APL One genotype can
predict grassed outcomes. 

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It can help optimize donor 
selection and post transplant 

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management. 
It also supports risk 

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stratification, family 
counselling and lifestyle 

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planning for those at higher 
risk. 

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That said, testing isn't yet 
routine. 

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The challenges include limited 
clinician awareness, variable 

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availability and the need for 
genetic counselling to help 

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patients interpret results. 
We know there are lots of 

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emerging treatments targeting 
APL one function and this 

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highlight the growing potential 
for genotype driven care. 

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In short, testing is important. 
It holds great promise for 

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delivering personalized, risk 
informed kidney care, but it's 

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got to be paired with 
counseling, with thoughtful 

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implementation, and with 
equitable access. 

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Yeah, that's great. 
Let's talk a bit about the 

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psychological impact of genetic 
testing and what's needed for 

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holistic care of patients with 
APO one kidney disease. 

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Josh, can you tell us a little 
bit about your experience 

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getting tested? 
What concerns did you initially 

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have about getting April 1 
genetic test? 

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And so for me personally, it was
actually no concerns jumping 

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into being APO 1 tested because 
being genetic testing actually 

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opened up the opportunity for me
to be placed in a clinical 

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trial. 
So there was a lot of opinions 

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from both sides when I sat down 
with my family about, you know, 

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maybe the pros and cons from 
potentially being in a clinical 

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trial. 
But with genetic testing, I 

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think it was necessary for me to
move forward, to weigh my 

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options with my treatment and 
with my care. 

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When I first heard about FPO 1 
and got tested, my initial 

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reaction was, you know, the 
shock and the fear. 

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I live in a household with seven
other people. 

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We're a family of eight. 
So it was just a lot of 

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questions running through my 
mind about my future, my family,

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my life goals. 
And I just remember wondering, 

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how would this affect my 
opportunities? 

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How would this affect my life? 
Will it limit me in a certain 

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way, will limit my family in a 
certain way? 

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And for me and so many other 
patients, it wasn't just a 

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medical thing. 
It's also very mental. 

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It kind of weighs on you heavily
emotionally. 

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The sense of security that you 
kind of had makeshift because 

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you have this thought now that's
placed on you that you have to 

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worry about. 
And me being diagnosed that just

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turning 18 years old, it was 
just an extreme adjustment. 

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Days where the anxiety was very 
unknown. 

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It was just tough. 
Just kind of placing that new 

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stigma on yourself and your 
family, knowing that she could 

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be at an increased risk for 
something like FSCS or another 

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kidney disease. 
Thanks so much for that, Josh. 

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And what support did you get 
when the results were provided 

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just in terms of family genetic 
counseling? 

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Was there a little explanation 
of what the results meant for 

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you and your treatment? 
Options For me, I think what 

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made the difference was my 
support system. 

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My family obviously was there, 
but as well as my doctor in the 

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care team. 
We took time to explain things, 

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to go step by step in a way that
I can understand it. 

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As a 18 year old being recently 
diagnosed, it's probably tough 

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to understand all what's going 
on, but they did a great job at 

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just explaining it to me and 
being there for me. 

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And like I said, I was able to 
be placed in a clinical trial 

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and just a layer of support that
I was able to get, not only 

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mentally, but physically, just 
checking on me and explaining 

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each step to be giving me the 
reassures. 

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And I felt like I was 
contributing to something that 

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could potentially help myself, 
maybe help my family or help 

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others in the future. 
Just for more research on APO 

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one. 
Yeah, no, thanks so much. 

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And Doctor Laurie, can you share
your perspective? 

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So I think as Josh has really 
told us today, there is a 

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psychological impact of getting 
genetic testing, and this is 

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real for patients and their 
families. 

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Many people worry about 
discrimination if someone 

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carries a risk variance that 
could limit their chances of 

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getting a kidney transplant. 
Especially for individuals of 

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African ancestry, there's this 
real concern about equity and 

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fairness, and that's why the 
decision around testing has to 

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be guided by both evidence and 
equity. 

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Another fair people raise is 
about insurance. 

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If insurers had access to the 
genetic information, whether for

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people with kidney disease or 
those who are completely 

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healthy, will that mean higher 
premiums or new barriers to 

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coverage? 
And so no, it's not just about 

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the science of the test. 
It's also about the support 

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provided for patients. 
Genetic counselors and 

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psychologists are critical in 
helping individuals that get 

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this result and manage the 
anxiety that may come with them.

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So before we close, are there 
any final messages either of you

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would like to leave with your 
listeners? 

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We'll start with Doctor Laurie. 
As we wrap up, I want to leave 

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us with this charge. 
Let's spread awareness about 

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APOL 1K disease, especially 
among those at risk. 

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Testing matters because the 
research is still evolving and 

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there are many more important 
question that we need to answer.

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But just as important at the 
science is the equity. 

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We need to make sure that people
who choose to be tested are 

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supported, results are handled 
fairly, and no one is left 

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behind. 
And finally, community 

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engagement is key. 
We need participation in 

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clinical trials and studies, and
just as important, we need to 

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share those results back with 
the community most impacted. 

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This is how we build trust, 
advanced knowledge, and make a 

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difference together. 
In summary, let's spread 

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awareness. 
Let's ensure equity in testing, 

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and let's bring research results
back to the community's most at 

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risk. 
Thanks so much, Sandosh. 

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My final message is really about
trust in the parts of genetic 

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testing. 
When I first went through this, 

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I had to learn to trust my 
doctor in the care team I was 

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walking with me. 
The trust made it possible for 

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me to accept my diagnosis, get 
into a clinical child, and 

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believe that there is still hope
for my future. 

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Genetic testing played a huge 
role in my story. 

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It didn't just give me answers, 
it placed me in the study that 

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I'm in today. 
And I truly believe that is a 

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major part of saving my life. 
But even more importantly, 

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genetic testing also leads to my
brother being tested and 

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diagnosed, and without that, he 
may not have caught his kidney 

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disease early. 
So for me, genetic testing isn't

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just about risk, it's about 
giving families a chance to act,

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prepare, and support one 
another. 

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So I truly believe if we keep 
pushing for awareness, access 

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and support around APO 1 
testing, I hope more patients 

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have stories that are similar to
me and my brothers and my 

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family. 
Yeah, such an important 

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perspective. 
I'd like to thank my guests, Dr.

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Titi Laurie and Mr. Joshua 
Albright for joining me. 

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It was great having you both on 
the podcast. 

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Thank you for having us. 
Thank you so much for having us.

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I'm Doctor Kirk Campbell, To 
access this and other episodes 

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00:13:20,240 --> 00:13:24,040
in our series, visit 
kligo.org/podcast. 

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Thanks for listening.