LASCC/HOPE FOUNDATIION—SICKLE CELL INITIATIVE

by: Nancy Rene

On April 12, 2021, The LA South Chamber of Commerce through its Hope Foundation formed the Sickle Cell Initiative.  The goals of the Initiative are to promote education regarding sickle Cell Disease, support local and national sickle cell CBOs, and increase political will to encourage state and federal funding.

Those of us in the sickle cell community, patients, families, and friends have been living with the sorrow and frustration of sickle cell for many years. Although there is some promising research using stem cells to find a cure for the disease, the landscape on the local level is bleak.

• There is inadequate training of doctors and nurses on the disease. Many doctors do not know the basics of good care.
  
• There are only two medications designed to lessen the sickling of blood and organ damage. Many doctors do not prescribe them, focusing instead on pain meds.
  
• There are about 100,000 people in the U.S. with sickle cell, 6,000 in California. This is a relatively small percentage of the population, making it difficult to get funding initiatives passed.
  
• Although newborns are screened for sickle cell disease and sickle cell trait, many adults may not know their trait status. We need nation-wide data collection so that we can see how many people actually have sickle cell, and so that those with the disease or trait can access the resources they need.
  
• SCD is largely a disease of African Americans and as such exists in a context of racial discrimination, mistrust of the health care system, and the effects of poverty.

As members of the LA South Chamber and Hope Foundation we can help by becoming educated on sickle cell, and supporting the activities of sickle cell organizations like Cayenne Wellness, SCDAA Sickle Cell Disease Association of America, and Axis Advocacy. We can also use our voices to support legislation that will improve funding for research and training. 

---

If you have questions on sickle cell disease or how you can help, please contact Nancy Rene nancymrene@yahoo.com.

---

Cecil McLinn LASCC Board Member who passed in January 2021 was a tireless advocate for sickle cell disease. He raised money for research and education in support of his daughter Tiffany who had the disease.