Reviewing Autosomal Dominant Polycystic Kidney Disease Burden, Resources

Louis Allesandrine, vice president, commercial franchise head, Nephrology, Otsuka America Pharmaceutical, Inc, offers insight into the prevalence and symptom burden of autosomal dominant polycystic kidney disease (ADPKD), as well as several resources available to patients and providers to inform diagnosis and treatment.

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Welcome back to PopHealth Perspectives, a conversation with the Population Health Learning Network where we combine expert commentary and exclusive insight into key issues in population health management and more. 

In this episode, Louis Alessandrine offers insight into the burden and impact of ADPKD.

My name is Louis Alessandrine. I'm the vice president and commercial franchise head of nephrology at Otsuka Pharmaceutical for the United States. I've been with Otsuka about 5 years. I've been in the pharmaceutical industry for a bit over 25 years, and most of my tenure has been in rare disease and/or oncology.

Can you tell us about ADPKD? What is it, and what is the associated symptom burden?

ADPKD is a form of polycystic kidney disease. It's an inherited rare condition where cysts form on the kidneys. Those cysts continue to grow over time, and they get worse as the kidneys get bigger. ADPKD affects about 140,000 American adults, and as the disease continues to progress over time, these people will eventually require dialysis or a kidney transplant. 

There is no cure for the disease. The best we can do at this point is slow down the progression of the disease.

How is ADPKD typically managed?

The disease can be managed by eating a healthy diet, staying physically active, getting enough sleep, and aiming for a healthy weight. There's nothing that can reverse the disease. There are ways that you can manage some of the symptoms. Hypertension and diabetes are often associated with ADPKD, and there is a pharmaceutical that can be used to treat ADPKD as well.

What unmet needs exist for this patient population?

A big unmet need right now is lack of diagnosis and awareness. There are lots of different risk factors that different populations face. For example, in Black and Hispanic populations, people have higher rates of diabetes and high blood pressure, and those can increase the risk of all types of kidney disease. It's important that awareness about kidney health be communicated more broadly than it is now. 

It's also recommended that patients who may be at risk for ADPKD—with a family history of the disease, for example—should get an assessment of their kidney size. Getting that kidney size done as early as possible if you realize you're at risk can change the course of an ADPKD diagnosis.

Where do you see the future of care headed for these patients?

We believe supporting patients and providers is absolutely critical. We at Otsuka have launched several initiatives over the last few years that provide education and resources for providers and patients with ADPKD. These patients and their caregivers really need to be their own advocates and become as educated as they can about ADPKD, especially regarding lifestyle changes that may help and medicines that may be available.

We have some resources. We have adpkdquestions.com. That's a website that helps patients learn about their ADPKD. We have Kitchen Creations for Kidney Health. That's an initiative that helps patients understand dietary restrictions they could follow; things like low-sodium and low-protein diets to help those with kidney challenges.

We also have a program we call Peer Mentoring, and that's where we put patients with ADPKD in touch with patients newly diagnosed with ADPKD, so they can share experiences and answer any questions not by going to a website, but by actually talking to somebody who has been diagnosed and may be receiving treatment.

Finally, another resource that we launched for patients is called bigkidneybigproblem.com, and that talks about large kidneys and has an interactive tool that can help educate patients about their condition. It shows what your kidneys might look like as they progress over time.

Is there anything else we haven't mentioned that you'd like to add?

Regardless of what kidney condition a person might have, it's important to understand that, oftentimes, these diseases run in families, and there’s nothing better than an empowered patient and a caregiver. With ADPKD, these conversations are very critical. 

The next time a patient suspects they may have kidney disease and they're gathered with their relatives, ask about family history. Ask about anyone that may have received dialysis or had a genetic condition or any kidney diseases.

If you find out that you or anyone in your family has a history there, it’s also important that you get an image and understand how big your kidneys are. Having that conversation with your nephrologist can help slow the progression of lots of different kidney diseases. It's important that you understand what that family history is before you go to your doctor.

Thanks for tuning in to another episode of PopHealth Perspectives. For similar content or to join our mailing list, visit populationhealthnet.com.

This transcript has been edited for clarity.