By Stacy M. Brown, NNPA Newswire Correspondent
Following a report earlier this year that drew attention to the challenges of living with sickle cell disease and the urgent need for change in patient care – particularly in hospital emergency departments – Pfizer Rare Disease brought together the Sickle Cell Disease Council for Change (CFC).
The CFC consists of more than 20 national Sickle Cell Disease advocates, patients, and experts who tackle the pressing issues faced by those living with the disease. The CFC is focused on improving quality of patient care along with enhancing education and advocacy for the Sickle Cell Disease community.
Sickle Cell Disease is a lifelong debilitating blood disorder that causes reduced blood and oxygen flow in the body, often resulting in organ damage and severe pain.
“The CFC was formed because there is urgent need to change the acute care paradigm for sickle cell disease patients. Pfizer [Rare Disease] is committed to working with the CFC to ensure that these issues are addressed as quickly as possible,” said Dr. Kevin Williams, chief medical officer of Pfizer Rare Disease.
As part of its mission of education and advocacy, the CFC published a report, “Improving Vaso-occlusive Crisis (VOC) Management,” which focuses on elevating the care paradigm in hospital emergency departments. Since Sickle Cell Disease treatment options are limited, the current practice is to focus on pain management, often with opioid medications, according to the report.
The impact of Sickle Cell Disease
Sickle Cell Disease affects about 100,000 people in the United States, with the majority being those of African descent, Pfizer officials said. Although Sickle Cell Disease was identified more than 100 years ago, there has been little advancement when it comes to its treatment, management and the overall understanding of the pathophysiology of the disease.
VOCs are the hallmark symptom and one of Sickle Cell Disease’s most significant challenges. These pain crises, which some patients experience several times per year, are so severe that patients may end up in an emergency room, desperate for help, according to a published report.
Given the need for repeated treatments, people with Sickle Cell Disease may build up a tolerance to certain medications and, as a result, require higher doses over time. Some emergency room staff may confuse dosage tolerance with dependence, and mistakenly view a patient with Sickle Cell Disease as a “drug seeker,” misunderstanding the legitimacy of the pain—a major barrier to care for these patients.
Improving the Standard of Care. Exploring treatment options.
The vision for CFC was born out of a round-table discussion several years ago, when a handful of patients and physicians discussed their everyday challenges with suboptimal acute care for patients with Sickle Cell Disease. According to Williams, who writes the regular column, “Ask Dr. Kevin Williams” for the NNPA Newswire, these challenges include:
The significant stigma that Sickle Cell Day patients face
Limited access to healthcare providers knowledgeable in Sickle Cell Disease and
The fragmented Sickle Cell Disease community
“The dialogue that ensued resulted in the question, “Could the care paradigm for Sickle Cell Disease be advanced quickly if the various efforts and stakeholders were synchronized?”
“By including experts across multiple medical specialties reflecting acute Sickle Cell Disease care, along with advocates and patients with Sickle Cell Disease, the CFC model delivers meaningful insights, communication networks, and solid solutions to address critical issues in the acute care paradigm,” Williams said.
The CFC endorsed seven comprehensive principles — best practices for managing Sickle Cell Disease patients in emergency departments. CFC members believe these principles will improve Sickle Cell Day outcomes, thereby saving lives, improving patient satisfaction, and lowering costs of care.
“The Council would like to socialize these principles to medical institutions across the country and welcome institutions that might be interested in piloting these best practices,” Williams said.
Sickle Cell Disease Advocacy
Another way the council is attacking the issues is by advancing “Sickle Cell Day” as an advocacy program that will minimize the stigma associated with Sickle Cell Disease by educating health care professionals about the impact of the disease. According to Williams, “The program is focused particularly on VOCs through patients and advocate voices and empowers patients to ‘self-advocate’ for better care.”
The CFC is particularly interested in developing educational tools for others within the Sickle Cell Day community (patients, medical providers, researchers and families).
Council members have brainstormed several concepts such as slides, brochures, apps, and videos that could be used as vehicles for understanding and communicating the novel science of Sickle Cell Day and to increase understanding and awareness.
Expanding the evolving science supporting Sickle Cell Disease is just one of several ways the council is attacking key issues from the report to ensure both healthcare professionals and patients are aware of the latest understanding of the disease and will facilitate more effective conversations about VOC management. “An example of this is a real-time interface through which patients would be able to track and better manage their symptoms, as well as receive reinforcement from their support network,” Williams said, noting that the CFC would like to hear from others who are interested in helping advance those ideas.
“The CFC is seeking to learn more about programs at institutions that have been successful in educating their emergency department staff and reducing stigmas. The Council wants to hear from institutions interested in developing and fielding an emergency department educational pilot program,” he said.
As outlined in the newly released CFC report, “there is work ahead to implement the overall CFC vision and specific workstream call-to-actions to create positive change for those affected by Sickle Cell Disease,” Williams added.
“The CFC hopes this report encourages ongoing efforts and helps to create new opportunities for collaboration and involvement in order to bring these initiatives to fruition. Thus, the CFC hopes to create positive change for those affected by Sickle Cell Disease and looks forward to keeping the community apprised,” Williams said.