TARPEYO Has Landed!

Some big news in the world of IgA Nephropathy treatment. IgA Nephropathy finally has a targeted therapy!
On December 15th, Calliditas Therapeutics announced the accelerated approval of TARPEYO (which was trialed under the name NEFECON).
Hopefully this is only the first of several such announcements to come over the next couple years as more trials advance towards completion. This is big not just for IgAN but for all the Nephrotic Syndrome related diseases such as FSGS and Minimal Change Syndrome that have similar trials in the pipeline.

A cure is the ultimate goal!

I should also reiterate my plea that if you are a patient please consider applying to a clinical trial if one is available in your area. The biggest challenge for clinical trials for rare diseases is finding patients that qualify and are available. It’s very difficult to reach the required number of participants to make it work, so every patient matters. More information on current trials can be found at https://kidneyhealthgateway.com/trials-research/.

Please check out the official announcement from Calliditas Therapeutics below. The drug should be available to patients early in 2022.


Georgie Deputy Pleads For Living Donor

A criminal investigator in Georgia is one of over 100,000 in the nation in desperate need of a kidney donor. You can read the full story below from the 11Alive news page.

You see these stories fairly often and then there are those you never hear about. For that reason I try to link to these stories when I come across them in hopes that it will in some small way raise awareness that organ donation is a critical need and kidneys are a scarce resource for people who need them.

Please consider registering as a kidney donor if you haven’t already!


Senate Passes Immunosuppressive Drug Coverage Legislation!

Just a brief (but significant!) update to the previous article regarding the drug coverage legislation making it’s way through Congress. Having already been passed by the House of Representatives recently, today the bill was passed by the Senate.

Call me bias, but this bill is an absolute no-brainer and I applaud both bodies of government for getting this right. I’m not sure if there are any other legislative hurdles for this law at this point, but I suspect it will need to be signed off by the president.

This is a good reminder to myself that as a kidney health advocate and general person who’s lived his whole life in this country, it might serve me well to brush up on the American legislative process. It couldn’t hurt.

The link to the National Kidney Foundation release is below:


House Passes Immunosuppressive Drug Coverage Legislation

It’s rare that I get to say this but, some good news came out of Washington today. The House Of Representatives passed the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act(H.R. 5534), which to summarize, will guarantee coverage for immunosupression drugs for the life of the transplanted organ. This will still need to pass through the Senate so while we haven’t crossed the finish line yet, this is a great first step.

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The Kidney Project: Bio-Artificial Kidney Update

The Kidney Project released a brief update on their Facebook page on March 10 regarding the push toward the clinical trials. In have had some discussions with the FDA already and they expect to have two or three more over the coming months so that they can (hopefully) submit the full application package over the summer.

Based on the tone of the update they sound cautiously optimistic that this is going to move forward, but the reality is it will likely continue to be a slow process. It’s just how it works when you try to bring this sort of product to market. There are a ton of safety requirements that have to be met before they can even think of starting clinical trials so it’s understandable why they have to take a very deliberate pace.

You can read the official update by following this link to their Facebook page.

You can support the efforts of The Kidney Project by contributing here.