Polycystic Kidney Disease

Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited renal disorder, and is the fourth leading cause of end-stage renal disease in Canada.

A lifelong disease, patients develop clusters of cysts -- noncancerous round sacs containing water-like fluid. The disease is quite variable, from minimal impact on kidney function to rapidly progressive disease that results in kidney failure at a young age.

There is no cure for ADPKD at this time, but research in recent years has led to improved tools for diagnosing and predicting the course of the disease, as well as new treatments that may slow the progression of ADPKD in some people.

With input from nephrologists across the province, the BC Renal Network is undertaking a number of initiatives to evaluate and improve the care of people living with ADPKD across the province, including:

Improving understanding of ADPKD in BC
Improving access to accurate and reproducible diagnostic tests
Guiding and evaluating use of new treatments

New treatments for ADPKD

A new drug named tolvaptan has been approved for use in Canada for the treatment of Autosomal Dominant Polycystic Kidney Disease. Tolvaptan blocks a hormone called vasopressin. Vasopressin does many things in the body such as helping it retain water. It is also one of many factors that leads to growth of kidney cysts in patients with ADPKD.

Based on current studies, not all people with ADPKD are good candidates for treatment with tolvaptan. If you have ADPKD, you and your nephrologist can decide whether tolvaptan is a good treatment for you based on your individual characteristics. For more information on this drug, please download the ‘Frequently Asked Questions’ document on tolvaptan found below.

At this time, tolvaptan is not funded by either BC PharmaCare or the BC Renal Network. Some private insurers may pay for tolvaptan when treatment is indicated; if you and your nephrologist are considering treatment with tolvaptan, this is something you can discuss. It is not unusual for a new drug not to be funded right away. The BC Renal Network is playing an active role in evaluating this new drug and determining where it may fit into the overall care of ADPKD in BC.

File Links:

Tolvaptan patient FAQ

Learn more about ADPKD

If you would like to learn more about ADPKD, please visit the PKD Foundation of Canada's website. There you will find excellent information about PKD as well as opportunities to get involved in the exciting work done by this foundation to help improve the lives of all people living with PKD.