Children’s Specialty Center of Nevada Joins New Sickle Cell Disease Collaborative
Partnership Brings Better and Consistent Care To Those With Sickle Cell Disease
The Children’s Specialty Center of Nevada will join other well-known regional treatment centers in the Western United States to improve available services, as well as the long-term health, of those affected by sickle cell disease (SCD), the most common inherited blood disorder in the United States.
The Pacific Sickle Cell Regional Collaborative (PSCRC) part of the U.S. Department of Health and Human Services’ Health Resources and Services Administration (HRSA), will specifically address the unique needs of those affected by sickle cell disease.
The vast majority of those with SCD are of African American and Hispanic descent. In many communities, economic disparities often pose barriers to receiving treatment. The sickest of those with SCD are often unable to work and must rely on Medicaid. However, fewer providers are willing to see these complex patients due to low reimbursement rates. Additionally, few physicians working with adult patients are trained to manage SCD and there are dwindling numbers of hematologists working with adult patients.
As such, health related quality of life is often poor for those with SCD and the lifespan is significantly shortened based on the absence of knowledgeable health care providers.
PSCRC outlets, including the Children’s Specialty Center of Nevada will provide:
- Sickle Cell Comprehensive Care Team – knowledgeable health care providers who are up-to-date on the latest treatment methods, best outcome practices and clinical trials. Team members provide consistent medical access to SCD patients improving overall health and life expectancy.
- Shared measurement and data monitoring – allows best treatment methods to be tracked and ultimately shared to providers in and outside of the collaborative.
- Family to Family community based organizations – to help access patients/families in need of services.
“It is truly a great honor to be included with this great endeavor,” said Alan Ikeda, M.D., Director of Oncology at the Children’s Specialty Center. “In addition to the ongoing clinical trials that are evaluating the efficacy of new therapeutic agents at the Children’s Specialty Center of Nevada, the PSCRC will increase the cooperative interaction with other providers that treat sickle cell disease in order to identify other needs and decrease suffering for patients affected with sickle cell disease.”
“This is the type of collaboration that is much needed in our community and will provide access to a wider range of research for our sickle cell patients,” said Nik Abdul-Rashid, M.D. “To be able to work in close communication with the leading experts in this field is truly exciting.”
The Children’s Specialty Center of Nevada will join other sickle cell disease treatment centers including, Providence Hospital, Anchorage, Alaska; University of Arizona Cancer Center, Tucson, Arizona; St. Luke’s Mountain States Tumor Institute, Boise, Idaho; Oregon Health Sciences University, Portland, Oregon; and Seattle Children’s Hospital, Seattle, Washington.
The Children’s Specialty Center of Nevada and The Hemophilia Treatment Center of Nevada are programs of Cure 4 The Kids Foundation, a 501(c)(3) non profit organization founded in 2007.
Alan Ikeda, M.D.
Nik Abdul-Rashid, M.D.
Cure 4 The Kids Foundation is a 501(c) 3 nonprofit organization. Its mission is to provide funding and access to the latest medical treatments for those facing life-threatening diseases such as cancer, rare and ultra rare diseases, inherited bleeding disorders and rheumatological conditions. Dr. Jonathan Bernstein founded Cure 4 The Kids Foundation in 2007. Bernstein saw firsthand the difficulties faced by families whose children were affected by major diseases but didn’t have the financial resources or health insurance to receive treatment. Cure 4 The Kids Foundation was created with these families in mind. Cure 4 The Kids Foundation’s Charity Care Program ensures patients at the Children’s Specialty Center of Nevada and the Hemophilia Treatment Center of Nevada receive medical treatment regardless of family income or presence of health insurance. www.cure4thekids.org