Wednesday, October 17, 2018
Health

In St. Pete, kidney patients gather for science and solidarity

ST. PETERSBURG — Kidney disease doesn’t discriminate.

The crowd of more than 200 patients who gathered at the Vinoy Renaissance St. Petersburg Resort range in age from teenagers to seniors. They are of different ethnicities and come from all over the country.

They all have this in common: they were diagnosed with a kidney disease.

There are more than 40 million people affected by chronic kidney disease in the U.S. alone, making the American Association of Kidney Patients one of the largest patient organizations in America. Patients, caregivers, doctors and government officials gathered in St. Petersburg for the group’s 43rd annual National Patient Meeting this weekend.

Some patients strolled the hallways of the historic bayfront Vinoy with dialysis bags dangling from their belt buckles. Others stepped out of the conference rooms to attend dialysis appointments at nearby facilities.

Unlike most corporate conference settings where food is limited, the breakfast and lunch menus offered wide-ranging choices to accommodate those on strict diets. Food like pizza or beans or even soda can be out of the question for some dialysis patients. Rice milk replaced traditional milk and cream at the coffee bar.

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"This meeting is a way for us to bring patients together and educate them on trends that could affect their own health," association president Paul Conway said. He was diagnosed with kidney failure at 16, and spent two years on dialysis before receiving an organ transplant.

"A cool thing that’s happening now, is a lot of our members meet each other online through social media, then come to the conference," he said.

As an advocacy group that pushes for lower drug costs and more funding for research, much of the group’s agenda focuses on new medical trends that affect kidney research and treatment.

Conway described the present as an "exciting time" for kidney disease research, with discussions of new drugs to slow down the process of kidney failure, and artificial implantable kidneys on the horizon. Another hot issue for the association this year is working with insurance companies to stop labeling organ donors as having a pre-existing medical condition, which Conway said is a strong deterrent or recruiting people to donate.

"Research has been stagnant for a long time in kidney disease," he said. "Cancer, HIV and heart disease lead the way in medical innovation. Dialysis is still the main form of treatment for patients, as it’s been for decades, but we’re hoping that will change soon."

Sandeep Patel of the federal Health and Human Services Department discussed on Friday a new nationwide project called "KidneyX" aimed at spurring new innovation for the treatment of kidney disease.

"Unlike cancer, there’s no urgency to solve kidney disease," Patel said. "We will give out research prizes to fund innovative new approaches and aim to demystify FDA regulations which can be a deterrent to some investors."

KidneyX, developed by the American Society of Nephrology and the HHS, will pilot a competition this year and will roll out other prize incentives for ideas to battle kidney disease over the next two years.

For David Rodriguez of San Antonio, Texas, the sense of community that the patients’ association meeting offers gives him peace of mind and encourages him to do more for others with the same disease. Diagnosed with kidney failure in 2008 at the age of 36, he said it was a wake up call.

"It was devastating," he said. "The doctors told me my kidney was operating at just 15 percent. I remember thinking I had to call my family and prepare them that I could die."

He spent nearly three years on dialysis before receiving an organ transplant in 2011. Rodriguez had to quit his job as a legal assistant during treatment. He lived off Social Security at that time and helped his father, who was also suffering from kidney failure. At the time, the wait list for a kidney in Texas was four to six years. Now it’s seven.

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In Florida, the average time for a transplant is 73 months, according to Tampa General Hospital, which leads the region in organ transplant surgeries. The average wait time there is 24.6 months.

"It’s exhausting," said Rodriguez, now 46. "Your life is so unpredictable when you’re on dialysis and waiting for an organ."

His father would eventually die from complications of kidney failure: "It’s easy to feel isolated because you don’t want to put your burden on your family members all the time. This is why I wanted to become an advocate."

Rodriguez now works as a patient relationship specialist at the University Transplant Center in San Antonio. He’s also on the association’s board of directors and is the organization’s ambassador for the state of Texas.

"This disease, it affects everyone," he said. "Every culture has its own story.

"Managing this disease changes everything. It alters your life forever."

Contact Justine Griffin at [email protected] or (727) 893-8467. Follow @SunBizGriffin.

 
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