Last August, the UCSF Benioff Children’s Hospital in Oakland was awarded a grant for $4.1 million from the National Heart, Lung, and Blood Institute (NHLBI) to improve work on sickle cell disease. Dr. Marsha Treadwell, the hospital’s clinical scientist, said the money would be put into the facility’s Sickle Cell Care Coordination Initiative. As the initiative’s co-principal investigator, she plans to work with others to resolve issues related to sickle cell treatment for people ages 15 to 45.
Sickle cell disease, according to the Mayo Clinic, causes blood cells to take on a crescent moon shape. These rigid, misshapen cells block and damage blood vessels, resulting in slow or obstructed blood flow and lack of oxygen to parts of the body. The Centers for Disease Control estimates that about 100,000 Americans are affected by this inherited disorder. Common symptoms of sickle cell disease include anemia, frequent infections, severe pain episodes called “crises,” and growth delay. Though bone marrow transplants have the potential to cure the disease, this treatment is not yet available for most patients. Some other forms of treatment are pain-relieving medications, blood transfusions and antibiotics.
The grant money, which lasts through the year 2022, will be used to help Children’s Hospital Oakland staff improve their work with sickle cell patients, including giving healthcare providers educational materials showing the perspective of patients, involving patients and caretakers in the initiative’s advisory board, and, with their help, conducting a needs assessment to find out what barriers they see to giving patients adequate care.
Jameelah Hodge, a patient care advocate with sickle cell disease, will be working with the hospital’s initiative. “Ignorance” was one of the key problems Hodge mentioned when asked to name the three most frustrating aspects of getting proper healthcare. Hodge said she often found herself having to explain to healthcare providers how to treat her while simultaneously managing her own pain, one of the symptoms of the disease.
Hodge said providers’ lack of knowledge can make them disinterested while listening to patients, learning how to properly soothe them, and giving them attention in a timely manner. “I’ve had to wait for several hours for care,” said Hodge. “There are often a lot of—I hate to say—disagreements that go on between patients and providers, and then you hear a lot of providers saying they’re difficult when they come in hospitals. However, providers do not seem to realize that the continued stressful and unfavorable experiences in the ER [emergency room] have created a lack of desire to seek hospital care when it is most needed.”
Hodge said patients feel dismissed by hospital staff when discussing their own treatment. “In an attempt to make ER care less stressful for me and easier for providers that often don’t know me, I carry a letter from my doctor that has a care plan for me that explains what works best for me,” said Hodge. “I’m often told by ER doctors that my letter doesn’t matter. It actually adds to the stress of my ER visit and can be a setback to my care.”
Byron Minter, a security guard with sickle cell who works with Treadwell, said some of his symptoms include intense back and joint pain and muscle spasms which can last anywhere from several hours to several weeks at a time. He said he can go to sleep fine and wake up in a crisis. The pain can be so intense, he isn’t able to walk—let alone explain the kind of help he desperately needs.
“I started going to a hospital where I live in Contra Costa County, and they didn’t know what sickle cell was,” he said. “I had to explain it to them and they gave me pain medication. But it wasn’t really enough to take away the pain. I had to call my [previous] doctor to send faxes to explain what to do. I’ve even gone to some doctors who think you’re faking—and it hurts, you know?”
Dr. Elliott Vinchinsky, hematology oncology director at Children’s Hospital Oakland, said the initiative would attempt to address those difficulties. He said that people like Minter who were diagnosed as children and were first treated at a pediatric hospital often have trouble seeking care as adults.
“When you talk about transitioning pediatrics sickle cell kids globally, what you’re really talking about in the United States is dumping them,” he said. “There is no receptive program that has the infrastructure to take care of them. It’s a national tragedy, in my opinion, and it doesn’t work for many reasons.”
Hodge and Minter said that it is a good idea for patients to maintain their personal health records and healthy lifestyles, speak with everyone from hospital administrators to senators, and educate themselves on the disease through medical resources.
Treadwell said she looks forward to seeing these healthcare disparities disappear. She also hopes that people with sickle cell disease will engage as partners with their care providers in an effort to make the healthcare system more responsive to their needs. “It really does take a partnership,” Treadwell said.