Building a Medical Home for Adults With Sickle Cell Disease

A young woman in her early 30s arrived in the Cardiac Intensive Care Unit with heart failure. She was at high risk of dying within days.

Years of sickle cell disease had damaged her heart, lungs, and other organs. Her condition had deteriorated so severely that doctors could offer little more than comfort-focused palliative care. For Giselle Salmasi, MD, a hematologist in Stanford’s Department of Medicine, the tragedy was not only the severity of the illness, but how preventable it had been. 

“She had been treated at a pediatric center through her early 20s with relatively few complications from her sickle cell disease. Then she lost that care,” Salmasi reflects. 

After aging out of pediatric care, the woman drifted through a fragmented healthcare system. Over the next decade, her disease progressed largely unchecked.

“By the time I saw her, her case was palliative, at an age when it never should have been,” Salmasi says. “Watching her and her family go through that, knowing it did not have to happen, is exactly why we are building this.”

The “this” she refers to is one of Stanford Medicine’s most ambitious new clinical efforts: a comprehensive adult sickle cell disease program designed to serve patients across the Bay Area and Northern California. Led by Salmasi and May Chien, MD, the program, which is expected to begin seeing patients in 2027, aims to give adults with sickle cell disease the same coordinated, expert care that many receive as children.

Losing the Safety Net

Sickle cell disease is an inherited blood disorder that affects the hemoglobin inside red blood cells. Instead of remaining round and flexible, the cells can become rigid and crescent-shaped —a process known as “sickling.” These cells can block blood flow, causing episodes of severe pain, organ damage, stroke, and other life-threatening complications.

Although medical advances have dramatically improved survival during childhood, adulthood remains a dangerous frontier for those with the disorder.

National data show that people with sickle cell disease still die decades earlier than the general population. One of the most vulnerable periods occurs when patients transition from pediatric care into the adult healthcare system.

“The mortality data show a clear spike at exactly that point,” says Chien, who is uniquely positioned to understand why. Chien is trained in both pediatric and adult hematology, allowing her to care for patients on either side of that divide.

“In pediatric care, a child with sickle cell has a team that has often known them since infancy, a single entity that coordinates everything, and parents managing the details,” she says. “Once they reach adulthood, all of that falls away at the same time.” 

Patients suddenly find themselves navigating insurance changes, school, work, and adult responsibilities while managing a chronic disease that requires constant medical attention. 

“The adult system they enter usually has no equivalent home waiting for them,” Chien says.

The result is a gap in care that can have devastating consequences. “The medicine to keep these patients well already exists,” she says. “What has been missing is the structure to deliver it without interruption at the one moment patients are most at risk of falling through.”

An Ecosystem of Better Care  

For Salmasi and Chien, the solution is not a single clinic visit or a new treatment protocol. It is an entire ecosystem of care that the two are working to pilot together.

“The vision is simple,” Salmasi says. “An adult home for sickle cell disease, where one team manages the whole person over a lifetime, instead of a series of disconnected emergency room visits.”

The program brings together specialists from across Stanford Medicine, including experts in pain management, transfusion medicine, pulmonology, nephrology, behavioral health, and social work. Rather than forcing patients to navigate a maze of separate appointments and disconnected providers, the team aims to coordinate care under one roof.

“In practice it means one clinic where a patient sees a hematologist who knows them,” Salmasi explains. “It means someone is actually watching for organ damage before it becomes irreversible, keeping patients on disease-modifying treatment, staying current on vaccinations, and treating pain promptly so a crisis doesn’t end in a hospital admission.”  

Decades of research show that comprehensive sickle cell care can reduce complications and significantly improve survival. Yet people with sickle cell disease still experience a life expectancy more than 20 years shorter than that of the general population, underscoring the need for continuous, specialized care throughout adulthood.

“A lot of the gap is not the biology of the disease,” Salmasi says. “It is the absence of steady, knowledgeable care.”

“Adults with sickle cell deserve more than survival. They deserve coordinated expert care, a longer life, and a real chance at a cure.” – Giselle Salmasi, MD, & May Chien, MD

A New Era of Possibility

The timing of the program is particularly significant because the field of sickle cell disease is entering a period of extraordinary change.

In 2023, the U.S. approved the first gene therapies for sickle cell disease, offering the possibility of a functional cure for some patients. The therapies, Casgevy and Lyfgenia, modify a patient’s own blood-forming stem cells so they can produce healthier hemoglobin and prevent red blood cells from sickling. 

“It is the most hopeful shift in this field in a generation,” Chien says.

For decades, sickle cell care focused primarily on managing symptoms and preventing complications. Now, physicians can begin conversations that once seemed impossible.

Yet these therapies remain complex and difficult to access. Patients often require months of preparation and intensive chemotherapy, and only a limited number of specialized centers are equipped to provide them.

“Adults across Northern California still have very limited access,” Chien says.

That reality makes comprehensive care even more important. Patients need specialized teams, not only to access emerging therapies, but also to remain healthy enough to benefit from them.

“We want to become a place that can deliver and study these therapies,” Chien says, “and to give the much larger group of patients who are not candidates today the steady care that keeps them well enough to benefit from what is coming.”

Looking Beyond Stanford

The team’s ambitions extend well beyond Palo Alto.

Working with Stanford Health Care, Lucile Packard Children’s Hospital Stanford, and regional health care partners, Salmasi and Chien envision a hub-and-spoke model that could bring specialized care to patients throughout the South Bay and East Bay, and eventually to parts of the Central Valley.

“The point is that a person’s location stops deciding whether they can get expert care, or a shot at a cure,” Salmasi says. 

Creating that network has required years of planning, advocacy, and institution-building. 

“We are working to build a multidisciplinary clinic from scratch,” Salmasi says. “It has meant advocating for resources and recruiting the right people. All of it has to be in place for the care model to succeed long-term.”

For the physicians leading the effort, however, the challenge is worth it.

Their hope is that within a decade, young adults with sickle cell disease will no longer face a cliff when they leave pediatric care. That emergency room visits will become less frequent. That curative therapies will become more widely available. And that early death will no longer be accepted as inevitable.

“Adults with sickle cell deserve more than survival,” Salmasi and Chien declare. “They deserve coordinated expert care, a longer life, and a real chance at a cure.”