Ashland resident travels to D.C. to fight rare kidney disease

ASHLAND — Katie Strange didn’t go to the nation’s capital last month to see the sites.

The Ashland resident went to fight.

At 37, Strange — an Ashland Middle School intervention specialist — discovered she had a rare kidney disease that will only get worse with time.

So from Sept. 17 to 19 she met with members of Congress to advocate for the passage of two federal bills that supporters say will lead to a deeper understanding of rare kidney diseases and eliminate barriers to living organ donors.

Strange had been in and out of doctors’ offices for about 18 months, searching for an answer to her symptoms that included rashes and, eventually, blood in her urine.

By August 2023, she finally had an answer: IgA nephropathy, also called Berger disease.

Strange soon learned the condition is a rare form of kidney disease that happens when a germ-fighting protein called immunoglobulin A (IgA) builds up in the kidneys and causes swelling.

Over time, the inflammation makes it harder for the organs to filter waste from the blood.

The kidneys don’t regenerate themselves, like the liver. So over the next 10 years, Strange could either need dialysis or a kidney transplant, she said.

The educator, grappling with her new reality, found the IGA Nephropathy Foundation, an organization founded in 2004 to help find a cure for the disease and offer community to those diagnosed with it. 

That’s why she and more than 30-other fellow Berger disease patients traveled to the nation’s capital last month for something called “Hill Day.” It was an organized effort to meet with members of Congress and other officials to advocate for causes and legislation.

She said it was the foundation’s first Hill Day, and she felt honored to be part of the first people — all Berger disease patients — to advocate in D.C.

Advocating for bills

Her mission? To raise legislators’ awareness of two bills aimed at rare kidney disease research and improving the lives of those suffering.

One of them, the Living Donor Protection Act, would protect living organ donors and remove barriers to donation. 

Right now, organ donors face barriers such as higher insurance premiums,  potentially losing insurance altogether or losing their jobs after donating an organ.

The bill, introduced in April 2023, would prohibit insurance carriers from discriminating against, and provides other protections for, living organ donors.

Some states have passed legislation that does just that — Ohio is one of them. Gov. Mike DeWine signed H.B. 188 in 2022 that “prohibits life, disability and long-term care insurers from discriminating against living organ donors by denying them coverage or charging them higher premiums solely due to their status as organ donors.”

The American Kidney Fund (AKF) applauded DeWine’s passage of it at the time, but noted “the absence of federal legislation” that would bring an end to an “uneven patchwork of protections across the nation.”

Some states don’t provide any protections at all, the AKF stated. 

Another bill, dubbed the New Era Act, would require the U.S. Department of Health & Human Services (HHS) to establish ways to understand, treat and study rare kidney diseases.

Strange said one of the bill’s attributes includes a mandatory urinalysis during annual check-ups. 

“If this would have been done for me, they would have found that my kidneys were leaking proteins,” she said.

Regular urinalyses can detect kidney diseases in early stages, which leads to better long-term outcomes.

Early detection, therefore, is paramount, she said. The New Era bill would encourage the study of the roughly 150 rare kidney diseases and foster the discovery of new treatments, AKF has said.

Strange said she left her meetings with six congressman feeling hopeful for the future. 

She met with aids from congressmen Jim Jordan, and Ohio’s U.S. senators J.D. Vance and Sherrod Brown.

She also met with aids from congressmen representing Kansas, because another IGA Nephropathy Foundation advocate, with whom Strange partnered for the D.C. trip, calls that state home.

“I already heard back from Jim Jordan’s office,” Strange said, adding a representative from his office in D.C. emailed her to thank her for the visit. 

Waiting

She did her part, so now she waits.

In her waiting, she fights against the disease with a “conservative treatment plan,” which a strict diet with low sodium and medications meant to keep cardiovascular health in check.

The kidneys and heart are closely intertwined. Some medications for IgA nephropathy include prednisone, blood pressure medications and statins.

She’s grateful. Some more aggressive cases involve chemotherapy.

There are two specialized treatments that have received full approval from the Food and Drug Administration, and another is part of the FDA’s “accelerated approval program.” 

“So three drugs in the last five years. So I guess if I’m going to be diagnosed, at least I have options now,” she said.

Strange also continues to fight the disease with power derived from knowing, so she speaks to anyone and everyone willing to listen about the importance of getting kidneys checked.

“Education and knowledge … it’s nice to know the name of what you’re fighting. It’s nice to know what it is. Knowledge is power.”