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Tag: chronic kidney disease

How Patient Activation Made It Possible to Thrive with Kidney Disease

By DAVE WHITE

It had been 10 years since I’d seen a doctor when I arrived at the Emergency Room at George Washington University Hospital in October 2009. I was able to climb the first flight of stairs, but after I froze on the second, they brought me in on a wheelchair.

That was the first time I heard the dreaded words, “Your kidneys aren’t working.” I was put on dialysis immediately, and my life transformed into a series of tests and procedures. But even after three weeks at the hospital, it didn’t sink in that there was no cure.

I checked most risk factors for kidney disease: I ate the wrong foods, smoked more than a pack of cigarettes a day, drank too much beer, and didn’t exercise much. But the biggest risk to my health was not getting regular check-ups. I didn’t think I needed them, or that I had a part to play in my own health.

I hated going to dialysis three times a week. Since I could no longer work, the $20 cab fare each way was an expense my wife and I struggled to afford, so I skipped often. When a nurse warned me that if I missed three sessions in a row I would have to be dialyzed at the hospital, I decided this meant I could get away with one session a week.

The care plan I received from my providers called me “non-compliant” seven times. I felt they had written me off as a lost cause and saw no point in working with them either.

Finally, I was called into a meeting with six nurses, social workers, and clinic staff. When I said I skipped dialysis because money was tight, the charge nurse said, “We’re going to get you resources for transit and help you plan good meals.”

I was shocked – I didn’t know how support services worked. The nurse continued “But you have to do your part or you’re not going to be around much longer.”

No one had said this in such blunt terms before. I left the room, went home, looked at myself in the bathroom mirror, and said, “They’re right. You can do better. You have to do better.”

Fourteen years later, I am lucky to be alive to see the Centers for Medicare and Medicaid Services (CMS) include measures that place the patient’s voice at the center of clinical care. CMS has recognized that supporting patient activation, building a person’s knowledge, skills, and confidence around managing their health, and addressing social needs is critical to helping people like me get the support we need to get and stay healthy.

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The Carenostics Interview

In my other day job of advising companies, I was introduced to Carenostics by my friends at Bayer G4A. This is a super interesting company which is using AI to diagnose serious chronic diseases like kidney disease, asthma, and others much earlier. So far they are working with health systems like Hackensack in NJ and the VA, and have just raised a $5m round. Last week I spoke with father and son team, Kanishka Rao, COO & Bharat Rao, CEO. In particular look out for Bharat’s explanation of what has to go on behind the curtain to make AI become effective.

During National Kidney Month, Protect Patients by Protecting Their Health Care Choices

By ALLYSON Y. SCHWARTZ and ELENA RIOS MD, MSPH

The recent coronavirus outbreak has millions of Americans thinking carefully about their health and wellness. For the 37 million of our friends and neighbors battling chronic kidney disease, however, health care risks that the rest of us often take for granted are never far from their mind.

Every year, 124,000 patients with kidney disease see their condition progress to end-stage renal disease (ESRD), also known as kidney failure and will require dialysis at least three times per week to survive.

Hannah, an ESRD patient in Henrico, Virginia, describes dialysis as “the most painful thing, physically and emotionally, I’ve had to endure.”

As a physician who represents medical providers in the Hispanic community – a demographic disproportionately impacted by kidney disease (Rios) – and a former lawmaker who worked to reduce the uninsured rate and improve quality of care (Schwartz), we know that stories like Hannah’s are all too common.

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