Free Healthy Lifestyle Group Program
Exclusive program offered to CIBD patients and their family members. The program includes:
- Stress reduction techniques
- Nutrition and cooking
- Physical activity
- Music therapy
Dates to be determined at a later time. Please contact Spencer Dunn at 714-221-1200 or email email@example.com.
Congratulations to the Adult Sickle Cell Clinic at the MLK Jr. Outpatient Center in Los Angeles for its 2017 Achievement Award from the National Association of Counties (NACo) for the project titled “A Novel Approach to Sickle Cell Disease Closes the Healthcare Gap for Adults in South Los Angeles” in the category of Health. This entry has been seen selected as one of the 100 Brilliant Ideas at Work, as part of the NACo President Bryan Desloge’s presidential initiative.
The Pacific Sickle Cell Regional Collaborative (PSCRC) leadership team co-developed the new MLK Jr. Adult SC Clinic which opened its doers in Fall 2016 Dr. Ellen Rothman, MD, Chief Medical Officer at MLK Jr. Outpatient Center is leading the collaboration at MLK.
In California, 51% of adult patients with sickle cell disease (SCD) live in Los Angeles County, which lacked an adult SCD clinic for many years. As a result, the U.S. Health Resources and Services Administration’s Sickle Cell Disease Treatment Demonstration Program (SCDTDP) decided to address this gap in care. PSCRC, one of SCDTDP’s four regional grantee teams was eager to build healthcare services for adults with SCD in LA County’s public health system. The decision was to open a comprehensive sickle cell clinic.
“We are constantly modifying our services to match the community’s needs,” says Dr. Rothman.
Pediatric patients with SCD more typically receive evidence based care from knowledgeable providers as pediatric hematologists devote their careers to sickle cell disease. However, the severe shortage adult hematologists devoted to this devastating blood disorder results finds older teens and adults without access to the same high quality of comprehensive care they received in childhood. While new treatments are helping youngsters with SCD live into adulthood, they too often face devastating and often preventable complications because too few clinicians are knowledgeable about their care.
Along with Rothman, Center for Inherited Blood Disorders (CIBD) and PSCRC Leaders Susan Claster, MD, Adult Hematologist; Judith Baker, DrPH, CIBD Public Health/Policy Director for PSCRC; and Mary Brown, President and CEO of the Sickle Cell Disease Foundation of California, have worked intensively to open the MLK Jr. Adult SC Clinic with a mission statement of “The Care You’ve Always Wanted.” For more information, or to make an appointment: www.scdfc.org/scd-clinic-at-mlk.html, (424) 338-2801, firstname.lastname@example.org
“Cord blood can only be collected at birth, that’s why it’s important to do your research well before your baby’s due date. Watch this short video to learn exactly how cord blood is collected, processed and stored.”
For more helpful information visit ConsumerAffairs.
This month CIBD’s staff gathered for a “lunch and learn” built around hemophilia treatments and physical therapy. The presenters were our very own Dr. Amit Soni, Pediatric Hematologist and Associate Medical Director of CIBD, and Grace Hernandez, Physical Therapist at CIBD Clinic.
These learning sessions are provided to our diverse team including our CIBD Pharmacy staff who have various levels of clinical experience, and CIBD Admin staff who provide administrative support. We have all come together to better understand the community that we serve. At CIBD we believe this is the best way to be compassionate in our work no matter what level of support we provide.
In this meeting, Dr. Soni focused on the differences in Hemophilia A and Hemophilia B treatments. Hemophilia patients need a tailored treatment plan based on the level of severity. Even with a thoughtfully planned treatment, there are possible complications including inhibitors which can cause lifestyle changes. Essentially, each patient with a bleeding disorder is unique.
Grace highlighted the benefit of receiving treatment at a multidisciplinary Hemophilia Treatment Center (HTC) which includes access to a physical therapist. CIBD encourages physical activity for living a healthy life. People with hemophilia or bleeding disorders may experience joint or muscle bleeds. In an example, a patient participating in basketball was elbowed in the arm. A bleed was found in the deep tissue but could only be seen by ultrasound, which Grace is certified to use. Had this patient not been seen at CIBD Clinic, he/she could have been misdiagnosed, leading to a delay in treatment and potentially an E.R. visit. This is why it is essential for patients with bleeding disorders to be treated at HTCs.
At the end of each session was an open discussion where plenty of questions were asked. Our CIBD Pharmacy staff who offers a 340B Discount Drug Program to qualified patients, had many questions framed around how we can help our patients more.
At CIBD, we could not be more proud to be part of this dedicated team.
Do you have a bleeding disorder and receive care at a U.S. Hemophilia Treatment Center?
If the answer is yes, have you heard of Community Counts? Been wondering what all the buzz is about and how you can take part? Well, we have just the tool to help answer these questions and others you may have!
Download our informational brochure for patients entitled “How you can benefit from participating in Community Counts Registry for Bleeding Disorders Surveillance” and share this resource with others in the bleeding disorders community. This brochure (also available in Spanish) describes the benefits of participating in the registry and answers the following questions:
- What is Community Counts?
- How is the Community Counts Program structured?
- What are the three components of Community Counts intended to do? What information is gathered and tracked?
- Is participation in the registry voluntary?
- If I enroll in the registry, what am I agreeing to do exactly?
- Why is it important to participate in Community Counts?
- Who can participate?
- What information is collected from me?
- What should I expect if I choose to participate in the registry? What happens next?
If you still have unanswered questions after reading the information contained in this brochure, please visit http://www.cdc.gov/communitycounts/.
¿Tiene un trastorno de la sangre y recibe atención en un centro de tratamiento para la hemofilia en los Estados Unidos?
Si la respuesta es sí, ¿ha oído del programa La Comunidad Cuenta? ¿Se ha preguntado de qué se trata y cómo puede participar? ¡Tenemos la herramienta apropiada para ayudar a responder estas preguntas y otras más que usted pueda tener!
Descargue nuestro folleto informativo para los pacientes titulado “Cómo beneficiarse al participar en el Registro de La Comunidad Cuenta para la Vigilancia de Trastornos Hemorrágicos” y comparta este recurso con quienes pertenezcan a la comunidad de las personas con trastornos de la sangre. Este folleto (también disponible en inglés) describe los beneficios de participar en el registro y responde las siguientes preguntas:
- ¿Qué es el programa La Comunidad Cuenta (Community Counts)?
- ¿Cómo está estructurado el programa La Comunidad Cuenta?
- ¿Cuál es el fin de los tres componentes de La Comunidad Cuenta? ¿Qué información se reúne y se monitorea?
- ¿Es voluntaria la participación en el registro?
- Si me inscribo en el registro, ¿qué exactamente estoy aceptando hacer?
- ¿Por qué es importante participar en La Comunidad Cuenta?
- ¿Quién puede participar?
- ¿Qué información sobre mí se recogerá?
- ¿Qué debo esperar si elijo participar en el registro? ¿Qué pasará a continuación?
Si todavía tiene preguntas sin contestar después de haber leído la información de este folleto, por favor visite http://www.cdc.gov/communitycounts/.