Tampa General Hospital program will help more Blacks receive kidney transplants | Health

Tampa General Hospital is creating a new program that seeks to increase the number of Black patients receiving kidney transplants. The program, which is expected to begin in September, is called the African American Transplant Access Program or AATAP. 

Led by Dr. Anthony Watkins, a nationally recognized transplant surgeon at Tampa General Hospital, the goal of the program is to “address disparities in listing Black patients” for kidney transplants.

Rev. Dr. Patricia Wallace, 70, of Pahokee knows all about that disparity. When she was diagnosed with kidney failure in 2022 and told to go on dialysis, she said it was briefly mentioned she could get a transplant. It wasn’t until after receiving dialysis three days a week for four-hour appointments that she realized receiving dialysis treatments would impede her everyday life. A minister for the last 36 years, she is the Presiding Elder of the Trending Tremendous Tampa District of the African Methodist Epis- copal Church, and often travels, as she oversees 18 churches in Tampa.  

After a month of dialysis treatment, she pushed her doctors to refer her to begin registering for the transplant list. 

“I had a friend who said they were on the transplant list. (Doctors) (did) mention that you have an option of getting on the transplant list. But many of the people at the dialysis center where I was going had been on dialysis for 15, 20 years as though they (didn’t) have options,” said Wallace. “When I tried, they said, well you got plenty of time. I said no I don’t…I said I want to start the paperwork now.”

Obstacles to finding donors

The great grandmother decided to register for the transplant list at Tampa General Hospital. Its kidney transplant program was ranked third in the nation by volume in 2020.

In 2021, surgeons at the hospital completed 563 organ transplants, according to a news release. 

“I want to live to see them grow up and be productive citizens. After a year of testing and meeting all of the requirements, as of May this year, I got put on the kidney transplant list,” Wallace said, referring to her grandchildren. 

So far, she has not found a living donor but remains hopeful. “A lot of my family tested but they’re not eligible. We run high in high blood pressure and diabetes. If you’re dealing with any of those and on certain meds, you won’t be a candidate to donate as a living donor,” Wallace explained.

Dr. Watkins said this is one of the many obstacles African Americans face in finding a living donor. Historically, Watkins said, there is a lower rate of organ donation in the Black community, which he believes is partially due to mistrust of the medical system, and a lack of awareness about organ donation. 

Wallace agrees the Black community needs to become more aware of the issue and she has collaborated with Tampa General to host workshops on the topic with members of the A.M.E. church. 

“We’re not getting transplants as needed or they’re not being offered, or they’re not being made aware that they can get transplants. And I’m not talking about senior citizens, I’m talking about  young people… in their 20s and 30s that are on dialysis,” Wallace said.  “I think the lack of education on the need of being donors, the number of people (receiving) kidney dialysis and those that need transplants, I think we have no idea how massive that is.”

‘Hope is finally here’

Getting on the list to even receive a kidney transplant is a major hurdle that many African Americans face, according to Dr. Watkins. He believes lack of quality health insurance, lack of access to healthy food and lack of health literacy are barriers that prevent some from being referred for a kidney transplant evaluation, or to be listed for a transplant or to even receive a kidney transplant.  

At the dialysis center that she visits in West Palm Beach, Wallace said the overwhelming majority of the patients are African American and very few are white. She said the patients are of all ages, including many in their 20s and 30s. 

“What put them there I don’t know but there are a lot of young people, African American.” Wallace said. 

What gave Wallace chronic kidney disease was a bite on her thigh she received back in 2009. She doesn’t know what bit her but said it started as a white bite and grew to a large red mass on her leg. 

“I went to the emergency room and woke up nine days later… I was very sick and didn’t know it,” Wallace said. “After I got bit by whatever, it got infected, and I lost 60 percent of my kidney function from that ordeal.’’

In 2022, 13 years later, her kidneys began to fail. Wallace said if she finds a donor, she will have to foot the bill to stay in a hotel in Tampa for 30 days while she recovers.

But fortunately, her insurance provided by Medicare and VA benefits would cover her transplant and the medical bills of her donor. In the mean-time, she plans to join Tampa General’s African American Transplant Program. 

“I feel that hope is finally here. Hope for a longer life. Hope for equal opportunity for good health. And hope that the world will have a stronger knowledge of what it’s like to live the life of a patient with kidney disease,’’ Wallace said.

“I think we are not doing a good job of educating our communities. I think that this is so needed and for them to start this (program) that really speaks to the health of African Americans because it’s been neglected, is massive,” she added. 

Mistrust continues

Dr. Watkins also said mistrust in the healthcare system is another reason Blacks are less likely to receive a kidney transplant. 

He said the mistrust is deep rooted, dating back to experiments conducted on Black patients such as the Tuskegee Study of Untreated Syphilis, the case of 

Henrietta Lacks whose cervical cancer tumor cells were used for scientific research without her consent, and gynecological experiments conducted by Marian Sims.

The surgeon said it is also difficult for potential donors to take time off of work.

“The program will consist of a team of providers who share experiences with Black patients to foster trust in the healthcare system, which studies have shown to be one of the barriers for these patients. Additionally, we will have a dedicated social worker to assist these patients through the complex evaluation process and ensure adequate social support is available,” said Dr. Watkins. 

The study will include patients who have a living donor and those willing to wait for a patient who has passed away. It’s a study being funded through a $900,000 grant from the National Institute of Health and in collaboration with Northwestern Medicine, where researchers created a similar program in 2019. 

“The main aim is to study the impact of the program on reducing health in- equities for Black End Stage Renal Disease (ESRD) patients. If successful, this model can serve as the blueprint for other transplant centers across the country. The next goal is to ensure equitable access to transplants with comparable outcomes,” Dr. Watkins explained. 

Each year, over the next four years, the program will enroll 160 patients.

Some will be in the control group, and some will be in the study group. 

“The purpose of the two groups is to compare the impact of the program with patients who undergo the normal transplant evaluation process,” Dr. Watkins said. “While the goal of this program is to improve the number of Black patients listed for a kidney transplant, we will also be tracking the rate in which these patients receive a transplant and their outcomes. “

According to Dr. Watkins, while Blacks only account for 15 percent of the United States population, on average they account for 35 percent of the end stage renal disease cases. 

Checkups and management

One of the best treatments for end- stage renal disease (ESRD), also known as kidney failure,  is a kidney transplant, according to Dr. Watkins, which he said improves the patient’s chances of survival and quality of life. 

“While Black patients are nearly four times more likely to develop ESRD than white patients, white patients are  listed for a kidney transplant and receive a transplant at higher rates than Black patients,” said Dr. Watkins.

“While donations can be from either living or deceased donors, kidneys from living donors confer better outcomes due to decreased waiting times and their tendency to last longer. Regardless, kidney transplants from either type of donor are better than remaining on dialysis,’’ he added.

Covid-19 has presented another challenge. According to Dr. Watkins, it’s another disease that can “cause severe inflammation and blood clotting issues that can lead to acute kidney injury, and in some cases, kidney failure, which can lead to an increased need for kidney transplants.” 

To avoid kidney failure, the surgeon advises patients to maintain a well-balanced diet, regularly exercise, avoid smoking, and consume alcohol in moderation.

He said annual checkups with a primary care doctor are critical to early diagnosis and management of diseases that can lead to kidney failure. 

According to the American Kidney Fund, 50,227 Americans are living with kidney failure, in which 71 percent of them are on dialysis. Forty seven percent of those kidney failure cases were caused by diabetes, according to the organization’s data.

Out of the 9,265 new cases of kidney failure in 2019, only 226 received a kidney transplant. The American Kidney Fund also provides assistance to kidney failure patients, as it reports 80 percent of these patients who receive dialysis, a form of life support, can’t work. 

To become an organ donor, Florida residents can reach out to the nonprofit, Donate Life Florida, www.donatelifeflorida.org.