Latest / CareTalk: Healthcare. Unfiltered. / Fighting to End Hereditary Polycystic Kidney Disease w/ PKD Outreach Founder, Richard Kellner | HealthBiz Briefs

Transcript

Fighting to End Hereditary Polycystic Kidney Disease w/ PKD Outreach Founder, Richard Kellner | HealthBiz Briefs · CareTalk: Healthcare. Unfiltered.

• 0:00
  Polycystic kidney disease or PKD is a leading cause of kidney failure that has long plagued generations of families.
• 0:08
  But the combination of pre -implantation genetic testing and IVF has the potential to end PKD in families.
• 0:21
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• 0:56
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• 1:02
  Welcome to Health Biz Briefs.
• 1:04
  I'm David Williams, president of Health Business Group here with Richard Kellner, whose PKD Outreach Foundation is on a journey to end polycystic kidney disease.
• 1:13
  Welcome, Richard.
• 1:14
  Thank you for having me, David.
• 1:16
  Appreciate it.
• 1:17
  Richard, what is PKD and what is your connection to it?
• 1:22
  Sure.
• 1:22
  So PKD is a genetic kidney condition.
• 1:26
  that causes cysts to grow on the kidney.
• 1:29
  And ultimately in many cases causes kidney failure by the time a patient with it is 40 to 50 years old.
• 1:37
  And because it's a dominant gene, it has a 50 % chance of being passed on to each child.
• 1:46
  So multi -generations of kidney failure and we're looking to put an end to that.
• 1:52
  You know, the conventional wisdom on PKD is that you sort of do nothing and wait until your kidneys fail and then you get a transplant if you can or go on dialysis if you can't.
• 2:02
  How are you challenging that conventional wisdom?
• 2:05
  Yeah.
• 2:06
  You know, I accepted that conventional wisdom for 30 years.
• 2:11
  My late wife had had PKD and for 30 years we just listened to that wisdom.
• 2:18
  had a...
• 2:19
  Her kidneys failed at 47.
• 2:21
  I donated the kidney to her 10 years ago.
• 2:26
  Unfortunately, she passed three years ago, not from the PKD, from a comorbidity, the anti-rejection meds from a transplant make it a less than perfect solution.
• 2:45
  But one of the things that we learned after her transplant is that A, there are things that young adults with PKD can do to slow their progression of their PKD and hopefully extend the native lives of their kidneys another 10 to 15 years.
• 3:04
  So we really encourage young adults to get under the care of a nephrologist that specializes in PKD.
• 3:12
  Most nephrologists do not.
• 3:15
  but the specialists that do, they'll have better information about the medications that are available today, the dietary changes, dietary supplements.
• 3:25
  So there are definitely things they can do.
• 3:27
  And then the most important message that we have for young adults is that with IVF and pre-implantation genetic testing, they could reduce that risk of passing the PKD on to their future generations from 50 % to virtually nothing.
• 3:46
  So that sounds like a great idea.
• 3:49
  And you also now have put a partnership in place recently with US Fertility to help make that happen in a way that a startup foundation is unable to do.
• 3:59
  What is US Fertility and what is the nature of this partnership?
• 4:02
  Yeah.
• 4:02
  So US Fertility is a large national fertility chain with multiple centers across the country.
• 4:12
  You know, the most important thing about this partnership is A, they have a specialty in the pre -implantation genetic testing and specifically now with PKD, but also combined with our grants, they're providing a 20 % discount to patients that are in our program that don't have insurance that would basically take the out -of -pocket costs for the IVF and pre -implantation genetic testing for one round.
• 4:40
  from 30 grand to approximately 15, which would put this solution in the reach of a lot more people.
• 4:49
  Good.
• 4:49
  Well, it's exciting, I think, for everybody involved to have that and a real tangible expression of what can be done with these new technologies.
• 5:00
  Well, that's it for the latest Health Biz Brief.
• 5:02
  If you like what you hear, check out my Health Biz Podcast for a full -length interview with Richard about his life and career.
• 5:10
  Richard Kellner, founder of the PKD Outreach Foundation, PKDo.
• 5:14
  Thanks for joining me today on Health Biz Briefs.
• 5:17
  Thank you, David.