Alexis Tappan has a college degree, a full-time job and a slew of church, community and other everyday involvements. All of that shows how she’s defied an ominous, years-ago prognosis.
At birth, she was critically ill. Doctors said she’d never walk, talk or develop normally. They warned her parents she could die young from sickle cell disease.
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Historically, patients often died in childhood from the disease’s damage to the body’s organs, bones and brain, including strokes. But the average life expectancy for sickle cell patients has roughly quadrupled since the 1970s.
“There’s a reason I’m still here,” said Tappan, who is now 29.
Across the United States, one in 365 Black babies is born with one of the four forms of sickle cell disease. In Shelby County, the rate is one in every 287.
Patients with sickle cell disease sometimes require blood transfusions with donated blood, especially from Black and other people whose blood type is a closer match to theirs. Donors can schedule a donation at organizations including the American Red Cross, St. Jude Children’s Research Hospital and Vitalant.
As efforts to improve diagnosis and care continue, sickle cell doctors, researchers, patient-outreach specialists, advocates and other observers say it’s been a long haul to this moment. They mark milestones in treatment. And they cite lingering challenges: The extraordinarily high costs of breakthrough gene therapies put them out of reach for most patients, half of whom are on Medicaid; 11% are on Medicare.
There have been fewer government and private donor dollars for sickle cell disease than for rare diseases that affect mainly, and sometimes fewer, white patients. And some medical professionals remain unfamiliar with sickle cell disease, so they often are indifferent, if not outright hostile, to patients. Sometimes, they deny patients treatment for their pain, which grows both more acute and more chronic over time.
“It’s very much a stigmatized disease because of the race of people who have it. You’re perceived as somebody who wants drugs only, who is a bad person, who is argumentative,” said Dr. Marquita Nelson, medical director of Methodist Le Bonheur Healthcare’s Comprehensive Sickle Cell Center.
“There’s a perception that people who have sickle cell disease are trying to game the system, malingering to get things that they want, using the drugs inappropriately.”
Those unfounded stigmas, which Nelson and others are again noting during September’s Sickle Cell Awareness Month, can worsen the anxiety, depression and post-traumatic stress disorder diagnosed in many patients and linked to what ails them physically.
Risky transplants and high-cost, DNA-tailored therapies
Sickle cell is a rare disease that’s only curable through a relatively rarely done bone marrow transplant. Of the estimated 100,000 U.S. residents with the diagnosis, 90% are Black. Globally, 80% of an estimated 7.7 million people with sickle cell are in sub-Saharan Africa.
It’s been nine years since Tappan was hospitalized for a major sickle cell crisis and its immeasurable, excruciating pain. Crises occur when normally roundish, flexible blood cells change into crescent-shaped, stiff cells. As they bunch up and block blood flow, they deny oxygen to a body that is aging prematurely.
There were years when Tappan was hospitalized almost monthly to be treated during a crisis. These days, her chronic illness is managed with hydroxyurea, an anti-cancer drug approved in 1998 as the first therapy to reduce cell-sickling crises in patients 18 and older.
Since last year, that No. 1 among three sickle cell drugs has been U.S. Food and Drug Administration-approved for use on babies as young as six months.
Methodist’s current roster of 429 sickle cell patients hail from Shelby County, other parts of western Tennessee and neighboring stretches of Arkansas, Mississippi and Missouri where there are no sickle cell specialists.
In Memphis, Regional One Health and St. Jude Children’s Research Hospital also operate specialized sickle cell treatment clinics. Tennessee’s other sickle cell medical centers are in Knoxville and Nashville.
Sickle cell clinicians are exploring the possibilities and limits of gene therapies that the FDA approved in 2023. Allowed for patients 12 and older, the one-time treatments, tailored to each individual’s DNA, are called precision or personalized medicine. A single treatment of Casgevy costs $2.2 million; Lyfgenia, $3.1 million.
A 2022 executive order from President Joe Biden had allowed state Medicaid programs to negotiate lower prices for cell transplant and gene therapy for low-income patients. But on Day 1 of his second U.S. presidency, Donald Trump signed an executive order rescinding that provision, yet retaining other parts of Biden’s larger plan to lower prescription drug costs.
“That … summarizes precision medicine’s health disparities problem,” University of Utah Center for Health Ethics, Arts & Humanities bioethicist James Tabery said, of the multimillion-dollar therapies.
During a September webinar on the potential and built-in inequities of personalized medicine, Tabery noted that hydroxyurea costs about $100 for a month’s supply. Even at that exponentially lower price, added Tabery, author of “Tyranny of the Gene: Personalized Medicine and its Threat to Public Health, “many patients with sickle cell disease have trouble getting access to hydroxyurea for all sorts of financial and social reasons.”
Bone marrow transplantation to replace mutating sickle cells with healthy cells from a donor costs roughly $470,000, researchers at Vanderbilt and Johns Hopkins universities wrote in a February 2025 commentary published in Blood Advances journal. Also, compared to gene therapy, hospital stays for successful transplants are shorter.
Marrow transplants, also called stem cell transplants, aren’t without potential hazards, though. Transplant candidates are often already severely weakened by symptoms that have not been controlled well by either of the three standard medicines. So, St. Jude requires patients and their parents to undergo extensive counseling about the risks and benefits before choosing whether to move forward, said Dr. Akshay Sharma, a St. Jude sickle cell disease specialist.
“Both gene therapy and transplant … [are] high-risk, high-reward therapies. A lot of things can go wrong,” said Sharma, who first encountered sickle cell patients in his native India. Globally, 14.5% of newborns with the disease are in that country; the remainder mainly are in other parts of the Middle East and Mediterranean.
Sickle cell patients stand a one in four chance of having a sibling or parent who is a full-match marrow donor, without the trait for sickle cell or the disease. With those odds, nonprofit St. Jude — its doctors were credited with curing the first sickle cell patient through transplantation in the early 1980s — has developed a technique for transplants using half-matched or mismatched donors, Sharma said.
After the transplant, patients should expect a hospital stay of about two months. Complications can extend that stay for several months more.
Currently, St. Jude is conducting and recruiting participants for several clinical trials about sickle cell. Some trials enroll children only, some young adults only and some enroll patients from both age groups. Some trials follow patients from cradle to grave. The trials investigate a range of questions, including how gene therapy and bone marrow transplants affect memory, multi-tasking, learning and other brain functions or what it takes to reduce infections linked to blood transfusions that patients sometimes need.
Methodist’s Nelson is a co-researcher on a St. Jude-led study of 16- to 20-year-olds about the intricacies of transitioning from pediatric to adult care. Disproportionately, compared to pediatric and older patients, hospitalizations and deaths due to sickle cell disease are higher among those in their 20s and 30s.
“We see 18-year-olds missing first appointments because they’re moving, they’re going off to college,” Nelson said.“Their moms and dads are starting to have less oversight. Maybe they’ve issues finding transportation to see the doctor.
“And if you’re out of care for more than six months, bad things happen.”
Diverting patients from the ER
Sickle patients can make same-day appointments, Monday through Friday, at Methodist. The arrangement helps to keep patients out of emergency rooms, where waits can be long and the care less-informed about the disease than in a specialty clinic.
“We’ll give them pain medications, IV fluids if needed, nausea medicine, things like that. The goal of that is, No. 1, continuity. We want to know what’s going on with our patients,” Nelson said.
The clinic’s staff includes three physicians, a researcher-pharmacist, a patient navigator for young people moving into adult care, a licensed mental health therapist, nurses and a nurse practitioner.
“I’ve seen firsthand how sickle cell disease impacts not only the body, but also the emotional, the social, the financial well-being of patients and their families,” said Rana Cooper, the nurse practitioner, who can do routine medical exams, prescribe medicine and so on. “I want to be part of changing that narrative by providing compassionate care, advocating for resources and, overall, just helping my patients live healthier lives.”
Terrence Perry was the first kid with sickle cell Cooper knew. He was an occasional playmate, the grandson of a couple who lived around the corner from her Maury City, Tenn. grandparents.
“Being young, I just really didn’t understand why he was always sick or not able to be at certain functions,” she said. “I didn’t really learn much about it until I became a nurse. I often chose to take care of the patients with sickle cell disease. I saw, even back then, how often they are overlooked.”
“Terrence’s Law,” enacted in 2021, is named for Perry, who has since died. It requires TennCare, the state’s version of Medicaid, to annually review medicines and treatment for TennCare patients with sickle cell.
That’s a big step up from protocols that existed when Alexis Tappan was born more than three months early in 1997. She weighed one pound, nine ounces. She spent her first three months in intensive care.
“She had so much wrong with her,” said her father, the Rev. Dr. Frederick Tappan, judicial advocate for Memphis Allies and senior pastor of Eureka TrueVine Baptist Church. “She was partly blind. She had a hole in her heart … She was getting infection after infection after infection after infection.”
At five months old, she was diagnosed with sickle cell anemia. She began cycling in and out of St. Jude and the emergency room of other area hospitals. By the time she was 6, she started understanding that she was pretty sick, said Alexis, who works at an employment staffing agency and runs Eureka TrueVine’s children’s department.
For someone who’s always had small, hard-to-find veins, having a clinician try to insert a needle is agonizing, she said. Today, she’s four feet, 11 inches tall and weighs 105 pounds. “I remember when it took three nurses on this side and three nurses on that side to hold me down, trying to get an IV in me. I’d be screaming at the top of my lungs. I’d be sweating. I’d already be stressed out from the pain. And with sickle cell, stress only brings on more pain.”
Her parents were the first to recognize a pattern in Tappan’s crises. Pain meds given to her in the ER made her so constipated she’d go into shock. Her organs would start shutting down. “We would tell the [ER] doctors what was happening. Some of them didn’t like that,” her father said. “I had to really make myself known. ‘We’re not trying to run your business. We’re talking about what we’ve seen and what she needs.’”
Said mom Regina Tappan, director of the Memphis Area Youth Association: “Her pediatrician told us, ‘You’re your child’s best advocate. You’re with her all the time.’ She equipped us with a lot of knowledge.”
She stoked their resolve to be their daughter’s first, fiercest advocate. In 2016, Alexis almost died during a sickle cell crisis, partly because the ER doctor didn’t know what to do and initially refused to prescribe pain medication, the family said.
“Now, I navigate sickle cell by taking my medicine every day,” said Alexis, who started taking hydroxyurea when she was 8.
“But she has a cousin with sickle cell,” her father said, explaining treatment challenges for some, “who cannot take hydroxyurea.”
“Because of the side effects,” added his daughter, who’s had two hip replacement operations.
“But for Alexis, it’s been a miracle drug,” he said.
Funding cuts, other setbacks — and hope
In an April 2025 letter, the American Society of Hematology and 95 other organizations urged Health and Human Services Secretary Robert F. Kennedy Jr. to restore a Centers for Disease Control and Prevention special unit on blood disorders. The national Sickle Cell Data Collection Program was a part of that unit, which the Trump Administration defunded.
There have been other disruptions. The CDC’s 2016 revised guidelines on the use of opioid pain-relievers — amid an opioid addiction and overdose crisis — may have unintentionally resulted in some sickle cell patients having a harder time getting their pain relieved, suggested researchers from Memphis’ University of Tennessee Health Sciences Center campus, the University of Texas M.D. Cancer Center and Dell Children’s Hospital in Austin, in an analysis published in JAMA in 2024.
Those realities aside, some working in various areas of sickle cell medicine revel in how far their sector has come since patients often were dying before their fifth birthday. That changed when, in the 1980s, penicillin became standard treatment, starting in infancy, against deadly infections not uncommon for those with the disease.
Since 2006, the 50 states and District of Columbia have screened newborns for sickle cell. Those tests have alerted some unknowing parents that they carried the sickle cell trait, knowledge that can help shape decisions on future pregnancies.
“As people are living longer, we have to develop a focus also on folks living well,” Nelson said.
“There’s so much more interest now in sickle cell doctors and sickle cell patients … When we go to our annual meeting, the American Society of Hematology conference, the sessions on new drugs for sickle cell are packed. They’re standing-room only. It’s exciting to see so much fervor.”
Health and criminal justice journalist Katti Gray’s news coverage has appeared on ABC.com, CBS.com, and in The Guardian US, the Los Angeles Times, Newsday, Reuters, The Washington Post and other publications.
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