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/.
Saturday, April 29, 2017
10:00 am – 2:00 pm
nquiries can also be made at 1-800-882-9539
The National Prescription Drug Take Back Day aims to provide a safe, convenient, and responsible means of disposing of prescription drugs, while also educating the general public about the potential for abuse and medications.
“Innovation Belongs In Every Moment” is this year’s theme at the Regional Annual Conference.
In partnership with the Hemophilia and Thrombosis Treatment Center at Rady Children’s Hospital in San Diego, CIBD co-hosted the 2017 Annual Conference of the Western States Regional Hemophilia Treatment Centers (HTC). Beginning on April 2nd, the two-day conference was held at the Catamaran Resort and Spa and hosted over 200 attendees. Our theme was “Innovation…belongs in every moment.”
The conference brought together clinical and non-clinical staff and supports HTC’s in expanding their professional networks, build clinical skills, and obtain updates on best practices. Attendees represented 14 HTC’s, community based organizations, community clinicians, and industry partners from California, Nevada, Hawaii, and Guam.
To learn more about the work done in our region you can go to: Western States Region IX Network.
If you are interested in learning more about HTC’s and their origin, check out our video on YouTube, entitled, “Blood Roots – Hemophilia Treatment Centers,” produced by the Federal Hemophilia Treatment Centers in Region IX, the University of Colorado Denver|Anschutz Medical Campus, and Oregon Health and Science University:
March 30 is National Doctor’s Day, a time set aside to honor those in the medical profession.
It’s easy to forget just how important, valuable and necessary good doctors are – that is, until you get ill or sustain an injury. CIBD would like to highlight our hard-working doctors, and recognize the long hours they work, their compassion, and the effort they put into taking care of our patients.
Diane Nugent, MD
President and Founder
Amit Soni, MD
Associate Medical Director
Nina Hwang, MD
Susan Claster, MD
David Buchbinder, MD
Loan Hsieh, MD
Arash Mahajerin, MD
Geetha Putheveetil, MD