Roxanne Nelson-Moore knows the difference a few hours can make.<\/p>\n
Every six weeks, the 65-year-old East Norriton resident spends about two hours at Jefferson Health\u2019s Center City campus undergoing a blood exchange to treat sickle cell disease. Her blood is removed through a double port in her chest and replaced with donor blood, a treatment she said has improved her hemoglobin levels and helped with other health conditions.<\/p>\n
\u201cOnce I have my exchange, I feel alive,\u201d Nelson-Moore said.<\/p>\n
Nelson-Moore is among about 400 sickle cell patients treated by specialists at Thomas Jefferson University, which received the U.S. Department of Health and Human Services\u2019 2026 Sickle Cell Disease Regional Care Excellence, or SoRCE, Award.<\/p>\n
<\/p>\n
Roxanne Nelson-Moore<\/p>\n
The recognition comes with $950,000 in annual funding over the next four years and is intended to improve access to specialized care for people living with the inherited blood disorder.<\/p>\n
For Nelson-Moore, the need for that care stretches back decades.<\/p>\n
She grew up suspecting she had sickle cell disease, but the genetic disorder did not begin causing significant problems until she joined the military in her 20s.<\/p>\n
Nelson-Moore began experiencing joint pain that was treated with morphine. Her symptoms eventually became so severe that she was discharged from the military early.<\/p>\n
\u201cI was still able to function, but some things were a little hard, like physical training,\u201d Nelson-Moore told The Philadelphia Tribune. \u201cWhen you overexert yourself, then it really aggravates the sickle cell, as far as the oxygen and everything in the blood cells.\u201d<\/p>\n
Treatment for the disease<\/p>\n
Sickle cell disease is an inherited blood disorder in which red blood cells become crescent- or sickle-shaped instead of round. The cells can break down more quickly than healthy red blood cells and become stuck in small blood vessels, resulting in anemia, reduced oxygen flow and episodes of severe pain.<\/p>\n
The disease disproportionately affects Black Americans. More than 90% of people with the disease in the U.S. are non-Hispanic Black or African American, according to the Centers for Disease Control and Prevention. About 1 in every 365 Black babies is born with sickle cell disease, while about 1 in 13 is born with sickle cell trait, meaning the child inherited a sickle cell gene from one parent.<\/p>\n
Treatment for the disease has evolved beyond managing chronic pain episodes and can include medications, blood transfusions, gene therapies and bone marrow transplants.<\/p>\n
At Jefferson, patients dealing with some of the most debilitating effects of sickle cell disease, as well as those receiving chronic opioid or disease-modifying therapies, are seen at least every three months. Patients with milder symptoms are generally seen every six months.<\/p>\n
Patients also receive screenings every three to 12 months to identify possible organ damage that may occur without obvious symptoms.<\/p>\n
<\/p>\n
Dr. Sophie Lanzkron of Thomas Jefferson University Hospital cares for patients with sickle cell disease.\u00a0\u2014TRIBUNE PHOTO\/KAYLA BROWN<\/p>\n
Kayla Brown
\nTRIBUNE PHOTOGRAPHER<\/p>\n
Nelson-Moore followed Dr. Sophie Lanzkron from Johns Hopkins University in Baltimore, MD to Jefferson. Nelson-Moore more had been commuting by car from East Norriton to Baltimore. Lanzkron, who has served as a principal investigator on previous federal awards and led Jefferson\u2019s application for the most recent award, said her department treats about 400 patients with sickle cell disease.<\/p>\n
\u201cThe purpose of this grant is to try to improve high-quality care for people with sickle cell disease,\u201d Lanzkron told The Tribune on Thursday.<\/p>\n
She said one of the biggest challenges is ensuring that patients can receive care from medical professionals with specific expertise in the disease.<\/p>\n
\u201cThe reason that I do this is because I think one of the most important things is to make sure that people living with sickle cell disease know that they need care at a high-quality sickle cell center with people with sickle cell expertise,\u201d Lanzkron said.<\/p>\n
\u201cThis isn\u2019t usually your community hematologist, who\u2019s a lovely human being, I\u2019m sure, but really doesn\u2019t have the level of expertise that\u2019s needed. Everybody needs to see a sickle cell expert, but there aren\u2019t many of us.\u201d<\/p>\n
Jefferson Health lists sickle cell care among its clinical specialties, offering diagnostic services and individualized treatment.<\/p>\n
The federal award recognizes Jefferson as one of seven centers across the country providing services close to communities in need.<\/p>\n
\u201cPeople living with sickle cell disease deserve access to high-quality care and support close to home,\u201d Health Resources and Services Administration Administrator Tom Engels said in the announcement.<\/p>\n
\u201cThrough the SoRCE Program, HRSA is strengthening regional networks that connect clinical expertise with trusted community partners so more individuals and families can get the care and services they need.\u201d<\/p>\n
The need is particularly significant in Philadelphia. The Sickle Cell Disease Association of America, Philadelphia\/Delaware Valley Chapter, told The Tribune that about 2,000 city residents are living with sickle cell disease.<\/p>\n
Zemoria Brandon, a social worker with the chapter who lost her husband to sickle cell disease, said Jefferson\u2019s approach extends beyond medical treatment.<\/p>\n
\u201cThey have a comprehensive program, which includes a social worker, behavioral specialist, nurse practitioners,\u201d Brandon said. \u201cThey have an infusion unit in the [emergency department], meaning that when people come to the emergency room that have sickle cell disease, they will have access to this unit so they don\u2019t have to sit around, waiting for hours to be seen. They also have an adult support group that meets monthly, which we co-facilitate.\u201d<\/p>\n
Lanzkron said partnerships with organizations such as the Sickle Cell Disease Association are critical because they allow health care providers to connect with people outside the walls of hospitals and medical offices.<\/p>\n
\u201cThey’re essential,\u201d she said. \u201cThey’re an essential sort of ability for us to sort of stretch out the care that’s needed. Many of the community-based organizations in our region provide community health workers. These are people who are boots on the ground, who can identify people who are not necessarily in care but need to be in high-quality care.\u201d<\/p>\n
Lanzkron said the federal funding will also allow Jefferson to expand collaboration and \u201ctelementoring\u201d with other physicians.<\/p>\n
Improving treatment, she said, also requires confronting the longstanding difficulties patients have faced when seeking medical care for severe pain.<\/p>\n
Previous approaches to the disease contributed to a lack of trust among some patients, Lanzkron said, particularly when they described debilitating pain episodes that could not be verified through conventional medical testing.<\/p>\n
Despite decades of advances, she said, researchers and physicians still do not know enough about the disease to consistently provide effective treatment outside specialty centers.<\/p>\n
\u201cThe problem in sickle cell disease is that the evidence, for a lot of what we do, just isn\u2019t here,\u201d Lanzkron said. \u201cThere hasn\u2019t been enough research done to know.\u201d<\/p>\n
The lack of extensive research also affects the clinical resources that health professionals rely on when deciding how to treat patients, she said.<\/p>\n
\u201cWhen you go to the resources that physicians and clinicians use to figure out how to do things, you actually have to have evidence for those systems to work and to tell you what to do,\u201d Lanzkron said. \u201cThey\u2019re just not good enough because we don\u2019t have reams and reams of data for how to take care of patients.\u201d<\/p>\n
Bunting Macauley understands how dramatically the right treatment can affect daily life.<\/p>\n
Macauley spent much of his life dealing with severe pain from sickle cell disease. His episodes worsened during periods of extreme heat or cold, and the condition led to frequent hospital stays.<\/p>\n
About 20 years ago, doctors at Children\u2019s Hospital of Philadelphia performed what Macauley described as a \u201cchimera\u201d bone marrow transplant, replacing half of his bone marrow with his brother\u2019s. But the procedure did not resolve his condition.<\/p>\n
After moving from Central Jersey to Philadelphia for work, Macauley began seeing specialists at Jefferson. When Lanzkron arrived at Jefferson, Macauley said he immediately noticed something different about her approach.<\/p>\n
\u201cShe spent her time honestly just asking me questions,\u201d the East Falls resident told The Tribune on Thursday. \u201cShe just wanted to get to know me as a patient, my history. I just automatically told her my entire history. Once I mentioned my particular situation, she was like, \u2018Oh shoot, let\u2019s find out.\u2019\u201d<\/p>\n
Lanzkron ultimately recommended that Macauley undergo a second bone marrow transplant, this time a full transplant.<\/p>\n
After undergoing the procedure in June 2025, Macauley said he no longer experiences the pain that extreme heat or cold once triggered.<\/p>\n
\u201cMy quality of life has greatly improved,\u201d he said. \u201cThe change in temperature hasn\u2019t affected me. I\u2019m able to get up and move throughout the day without thinking about sickle cell, which is a transformative thought process for anyone who has gone through sickle cell or has sickle cell.\u201d<\/p>\n
Macauley said living with the disease once required him to constantly anticipate how weather, hydration and everyday activities could affect his body.<\/p>\n
\u201cWe\u2019ve always been concerned about carrying extra jackets [in the winter] or in the summer carrying more water than usual,\u201d he said. \u201cMaybe find different ways to eat or prevent a sickle cell crisis. Over the past 15 months, I\u2019ve had none of that.\u201d<\/p>\n
Now, something as ordinary as the arrival of cooler weather feels different.<\/p>\n
\u201cGoing into this fall season, I just get to enjoy fall, maybe even wearing a light jacket versus being heavily clothed,\u201d Macauley said.<\/p>\n
For Lanzkron, giving more patients an opportunity to experience that kind of improvement is at the heart of Jefferson\u2019s work and the federal funding supporting it.<\/p>\n
\u201cWe\u2019re trying to address it from all angles to have people live the best possible life they can, and that\u2019s part of what this grant is about,\u201d Lanzkron said. \u201cIt\u2019s about getting people into that care so that their outcomes can also improve.\u201d<\/p>\n