One IgAN Patient’s Journey to Overcoming Inequities in Healthcare

When Thelma was just twelve years old, she started experiencing swelling in her hands and feet. But without health insurance, her family had to rely on free clinics for help. Due to the systemic inequities she faced as a child, it took nearly a decade to receive a diagnosis. Even then, she wouldn’t receive the proper education she needed to help maintain kidney function.

Today, she is a passionate advocate for all people with kidney disease, especially African Americans and those from financially disadvantaged backgrounds. Read on to discover Thelma's incredible story and learn about the crucial importance of equal access to quality healthcare and transplants for all.

Thelma's IgA Nephropathy (IgAN) diagnosis

Thelma grew up in an impoverished area where many families didn't have healthcare insurance and had to rely on free clinics. These factors, or, social determinants of health, can make it harder for people to access quality medical attention and preventative care.

"The free clinics told us I needed to lose weight yet never tested me for anything," said Thelma. "People assumed that because we're African American, we were eating fried chicken and doing negative things with our body. We couldn't always afford the best quality, but my mom almost always cooked healthy foods for us."

This cycle continued for almost a decade before Thelma graduated college and got private health insurance.

"I believe doctors didn't take us seriously because we are African American. My mom didn't understand the medical information and took care of six kids by herself, so she accepted the doctors' advice," said Thelma. "It's sad, but we often don't feel like we can question people with authority like doctors and police. I finally felt empowered coming out of college when I wasn’t a kid you could push to the side anymore."

Now in her early 20s, Thelma went to the doctor with flu-like symptoms. This time, she had the education and experience she needed to properly advocate for herself. Her health problems were finally acknowledged when a urine test revealed protein in her urine. After ruling out other diseases, a nephrologist confirmed that she had IgAN with quickly declining kidney function.

"When you're living in poverty, relying on government insurance like Medicaid or free clinics, you wonder if they're really there to help because they weren't diagnosing us. It hurt me because all of this could have been dealt with when I was a child," Thelma said. "I found out in 1993 when I graduated college thinking I was about to take the world by storm. Then suddenly I had IgAN and no education to help me slow its progression."

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The road to double transplants

In 1998 Thelma's kidney function dropped so low she had to either start dialysis or get a transplant. Luckily, multiple family members were a match, but her sister was the closest match to Thelma and volunteered. They were preparing for the transplant when their mother suddenly passed away.

"The grieving process put everything on hold. She passed away in September and I had to go on dialysis in November–there was no way around it," Thelma said. "I went on dialysis, we mourned, and then regrouped. My sister reminded me that my mother would have wanted us to get back on track. A few months later, she donated her kidney to me on my 30th birthday."

With a new kidney, Thelma graduated college with a degree in communications, got a job at a prominent broadcasting company, and spent time working at a radio station: "That transplant gave me back my life. I wasn't tied to a machine and was able to live again."

The new kidney lasted for more than ten years before it began losing function. 

"My IgAN symptoms returned in 2007, but that's also when I was blessed with my miracle twin boys. The doctor encouraged me to carry only one baby since I was high risk and already experiencing signs of preeclampsia," Thelma said. "I'd lost two miscarriages previously, so I was going to do whatever I could to have the babies. I went on bedrest and had many sonograms but it was worth it. The boys came at 29 weeks, spent a few months in hospital, and are thriving today." 

She went back on dialysis after the birth of her children and got on the waitlist for multiple transplant centers up and down the East coast.

"I was blessed with a second transplant in March 2011," Thelma said. "The unknown hero was a gentleman who went in for surgery and unfortunately didn't make it. That day he saved mine and another woman's life."

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Advocating for Transplants for All

The hospital failed to mention that Thelma's donor had CMV, a common viral infection. 

"It is not too bad, but they didn't tell me until I got to the hospital. I was stunned because the medication I'd need to keep the transplant and stay safe from CMV was $1000," Thelma said. "I had $1000 and a family who could help me but not everyone has that. Someone else may have had to turn down the transplant because they couldn't afford the medicine." 

Thelma researched medicine assistance programs to continue to afford the medication and wonders why healthcare professionals don't share these programs upfront.

"When it comes to transplants, doctors give African Americans this look like they're thinking I shouldn't tell them about transplants because they can't afford it," said Thelma. "Transplants weren't the primary treatment offered to me, especially with my first transplant. They only talked about dialysis. I feel that happens to many African American and Black patients because of all the people I talked to at the dialysis center. Whether I can or can't afford medication as an African American or Caucasian, the first question should be, 'what can we do to help you?'"

Thelma isn't waiting for kidney disease and transplant policies to change–she's taken it upon herself to fight for equality in the kidney care sphere as a Voices for Kidney Health Advocate.  She has spent years pushing for The Living Donor Protection Act, which prohibits insurance companies from denying coverage or increasing premiums for living organ donors, and The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act, to ensure all transplant recipients have access to the drugs they need to protect their new kidney.

See how you can take action today to improve equal access to healthcare.

"Most of my advocacy is through National Kidney Foundation. The Living Donor Protection Act is very important to me because my sister, and all living donors, give a kidney out of the goodness of their hearts and shouldn’t be penalized with premiums for saving a life," Thelma said. "We also know that medicine is key to the success of kidney transplants and we finally got immunosuppressive medication to be covered for the life of the kidney."

There is still work to do, but Thelma wants everyone struggling with kidney disease to have hope and persevere. 

"I am a chronic patient, a mom, and a wife. It's hard, but that's my life. I've learned how to think out of the box to enjoy life. For years I allowed my disease to control me. I did not control it and missed out on dreams that I could have pursued regardless of kidney disease," Thelma said. "Don't let kidney disease control you or paralyze you from enjoying life. You have the power to control it.”

At NKF, we are committed to KIDNEY EQUITY FOR ALL™. Learn more about our mission and see how you can get involved.