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Genetic Testing
Considering Genetic Testing for Rare Kidney Disease?
Start by discussing it with your nephrologist if:
- Your doctors suspects you may have a genetic form of your disease.
- Your family has a history of protein-spilling kidney disease or End Stage Kidney Disease, including dialysis or kidney transplant.
- You do not respond to prednisone or other treatments for your disease.
- You are of African descent.
Receiving approval for genetic testing from private insurance companies can sometimes be difficult and time consuming. If denied, your doctor’s office can submit an appeal.
Researchers believe that up to 40% of Black Americans on dialysis have a genetic cause of kidney disease related to changes of the APOL1 gene.
No Cost to Patients APOL1 Testing
Vertex Pharmaceuticals sponsors no-cost programs, through Natera and Arkana, for eligible individuals. These genetic testing programs can help raise awareness about the genetic causes of kidney disease in the Black community and reduce some barriers associated with genetic testing.
Patients who meet all of the following criteria are eligible for the no-cost to patient testing programs:
- African ancestry, including those who self-identify as Black, African American, African, Afro-Caribbean, Hispanic, or Latino
- Diagnosed with chronic kidney disease (CKD), end stage renal disease (ESRD), or presence of protein in urine (proteinuria)
- Not on dialysis and no history of kidney transplant
- Absence of diabetes
Alternate Avenues for Genetic Testing
If you are unable to get approval for genetic testing from your insurance, there are several other ways to obtain genetic information without having to spend money out-of-pocket.
Private Companies – Natera Renasight
Studies – Rare Genomes
Academic Studies – Duke APOL1 Study & Harvard
*Most academic studies are for research purposes only. It is important to understand that patients may not receive the results in a timely manner or at all. Most of these studies also do not include genetic counseling once results are found.
