September is known for Childhood Cancer Awareness month. It is often exhibited throughout September with its gold ribbons worn by teams and displayed at professional baseball parks, coin jars at grocery stores and throughout social media. Yet, not as many people are aware that September is also Sickle Cell Disease Awareness month.
In fact, sickle cell disease is the world’s most common genetic disease in the U.S., and most common among African American and Hispanic American persons. But as a group, people with sick cell disease experience worse health outcomes compared to other diseases and have access to fewer health resources. Many sickle cell patients are Medicaid beneficiaries, but less than 70 percent of doctors in the U.S. accept new Medicaid patients. In addition, many other medical conditions out there receive more funding from national foundations, even when the occurrence rates are far less. These health inequities are why the leadership team, clinicians and staff at Jonathan Jaques Children’s Cancer Institute at MemorialCare Miller Children’s & Women’s Hospital Long Beach are committed to the ensuring this important health need and programmatic support is available to the communities it serves.
“We are committed to providing quality and advanced care to our patients with cancer and serious blood disorders,” says Jacqueline Casillas, M.D., M.S.H.S, medical director, Jonathan Jaques Children’s Cancer Institute, Miller Children’s & Women’s. “Our clinical team is working on expanded access to a new medication to help our sickle cell patients manage their condition. We are hoping to continue to expand access to this vulnerable patient population to ensure access to the newest therapy options for this at-risk patient population regardless of socio-economic status.”
Zaya, 4, and her mom, Zianna visit the Sickle Cell Clinic – under the direction of Maritza Ruiz, M.D. and Leigh Hunter, NP – where Zaya is seen by physicians and clinical team members who specialize in serious blood disorders. In persons with Sickle Cell Disease, the abnormal sickled shape of their red blood cells can cause blockages in blood flow in any part of the body. As a result, people with sickle cell disease can have severe pain episodes, respiratory problems, and even strokes caused by these blockages.
Zianna still remembers the first time Zaya went into a sickle cell pain crisis while on an airplane. “We went to visit my dad, and Zaya was experiencing some swelling, and I thought it could be dehydration from the flight. But soon, I realized it was much more than that. She was in pain for quite a few hours, and I wasn’t sure exactly how to comfort her in the moment. It wasn’t an easy experience for any of us.”
The multi-disciplinary Sickle Cell Clinic prides itself on empowering patients and their families to learn about their disease and advocate for themselves. Unfortunately, there are times when health care providers who are not familiar with Sickle Cell Disease do not understand the severity of sickle cell pain or think patients are exaggerating or drug seeking. The sickle cell clinical team helps try to educate and change that stigma.
Currently, the only true cure for sickle cell disease is a bone marrow or stem cell transplant, which is only available to a small percentage of patients. Patient treatment at the Sickle Cell Clinic remains focused on clinically proven medications such as hydroxyurea, which has been used for more than 20 years to improve outcomes, and newer medications such as voxelotor and crizanlizumab.
Since sickle cell patients can be overlooked when it comes to awareness campaigns that highlights the needs of a pediatric disease, it was important for the Miller Children’s leadership team to make time to bring inspirational messages to the Sickle Cell Clinic as part of the Flames of Hope Project. Flames can be collected through Sunday, Oct. 3.
“Zaya is an inspiration to us all,” says Ike Mmeje, chief operating officer, Miller Children’s & Women’s. “She is a perfect little girl, with an imperfect illness – and my hope is that one day we can find a cure beyond a transplant to help these children. We definitely need more funding, research and resources to help promote health equity in the Black, Indigenous and People of Color (BIPOC) community.”
Zaya, whose name in the Tibetan language means, “the victorious woman,” doesn’t let sickle cell slow her down. She runs around from room to room talking to all the doctors and nurses and enjoys music and dancing once she gets home. She has a keen interest in swimming and gymnastics but must be careful with her condition.
“My dad often tells me I should move closer to him, “says Zianna. “But I just can’t leave this place. Miller Children’s is our home away from home, and we are grateful for the medical care, and most importantly the love and support she gets from the team here.”