People with sickle cell disease (SCD) are afflicted on two fronts – one by having a serious, chronic condition that inflicts pain and other complications – the other by a fragmented system of care.
Even though we know what causes SCD, there is only one approved treatment and no widely available cures. Individuals with SCD suffer from severe pain and infections with devastating complications such as brain injury, stroke, organ damage, and premature death. People with SCD are often unable to access quality care and the treatments they need.
The status quo is unacceptable, and we are setting out to change it.
Today, there are opportunities to transform this disease and the way we care for people with SCD. We are launching an international call to action on SCD by bringing together researchers, clinicians, individuals with SCD and their families, policymakers, and the private sector to focus our collective efforts and change the state of SCD around the world.
The time is now to change the course of this disease. Here’s how you can join us:
As an Organization
Pledge to take on activities or programs that will move the needle on SCD. Advocacy organizations, government agencies, companies, policymakers, and foundations can contact us at email@example.com to share how they plan to help us transform SCD.
NICHQ, the National Institute for Children’s Health Quality, today announces “Sickle Cell Pain in the Emergency Department: A Guide to Improving Care,” a step-by-step manual for anyone on the front lines of acute care, from emergency room (ER) doctors and nurses, to hematology specialists. The guide, launched on World Sickle Cell Day, is the result of a five-year collaboration between 15 multidisciplinary health care provider teams nationwide. Throughout the process, teams traded lessons learned and best practices for improving treatment for adults and children with sickle cell disease (SCD) in the ER.
An inherited red blood disorder, SCD is a chronic illness characterized by anemia and unbearable bouts of pain, so providing relief quickly is crucial to treatment. This incurable disease can lead to declining health, poor quality of life and early mortality. NICHQ Strategic Project Director Dr. Suzette Oyeku, said, “Sickle cell disease patients wait in excruciating pain longer than they have to for treatment. Guidelines do exist, but they have not been consistently implemented, particularly in acute care settings. Our guide was designed to help providers bridge this gap.”
NICHQ’s SCD work was funded by The U.S. Health Resources and Services Administration (HRSA) which oversees the SCD Treatment Demonstration Program and the SCD Newborn Screening Program. As lead facilitator for the programs, NICHQ was responsible for organizing and reporting on meetings; collecting, analyzing and distributing best practice data; and serving as the liaison between HRSA and the teams. The two projects yielded many results in improving care for SCD patients in the ER. These included a reduction in the wait time for evaluation by 69 percent and a 29 percent improvement in the time between triage and receiving pain medication. One of the most significant outputs of the teams’ extensive work is “Sickle Cell Pain in the Emergency Department: A Guide to Improving Care.” The online publication offers best practice findings such as standardized order sets, a recommendation to consider using intranasal fentanyl and a color-coded, full body chart, reviewed by patients and doctors, as a standard pain assessment tool.
According to HRSA Project Officer Dr. E. Donnell Ivy, NICHQ and the Treatment Demonstration and Newborn Screening program grantees have pulled together an excellent resource. He said, “On World Sickle Cell Day and as Sickle Cell Awareness Month approaches, the timing for sharing this comprehensive guide could not be better. We congratulate NICHQ and all of our grantees on advancing the quality of care for these patients. As a result of their work, thousands of patients, from coast to coast, will receive better treatment in the ER.”
Declare Sickle Cell Disease a national health priority and support legislation to expand and establish SCD programs.
A Response to Your Petition on Sickle Cell Disease
As you know, sickle cell disease (SCD) is a common inherited blood disorder that affects an estimated 90,000 to 100,000 Americans, and can lead to lifelong disabilities and reduced average life expectancy. The disease disproportionately affects people of color, and occurs among roughly one out of every 500 African American births and one out of every 36,000 Hispanic American births.
SCD is a major public health concern that warrants ongoing federal support, and is a priority for President Obama and his Administration.
That’s why the Department of Health and Human Services (HHS) is actively engaged in a number of efforts to help do the following:
Better identify individuals with SCD
Improve access to care
Gather data about best practices in order to improve treatment therapies
Raise awareness of SCD
Promote health education about SCD
Search for a cure through ongoing research efforts
HHS is developing Healthy People 2020 objectives to support SCD-related health promotion and disease intervention initiatives across the federal government. To evaluate progress in meeting these objectives and better inform future federally funded research and prevention efforts, the Department is developing a pilot national surveillance system to collect data to better understand characteristics of those affected by SCD, what complications these individuals are experiencing, and what gaps exist in meeting their health needs.
Through the Health Resources and Services Administration’s SCD Treatment and Newborn Screening Programs, HHS is also expanding access to care for individuals with SCD by increasing the number of providers treating patients with SCD who are knowledgeable about current treatment options and identifying those with the disease sooner so that they can begin receiving recommended treatments. HHS is also increasing patient education and outreach efforts for individuals with SCD or who are carriers of the sickle cell gene mutation to prevent infections and ensure needed medical care is received. You can read a recent report detailing these efforts here.
The Centers for Disease Control and Prevention (CDC) has additional materials to raise awareness of SCD among teachers, non-medical professionals, and other members of the general public — all of which you can find online here.
We’re also investing in critical research on SCD at institutions across the country. The National Institutes of Health (NIH) funds research focused on increasing the effective use of known SCD therapies, discovering new treatment options, ameliorating complications, and ultimately finding a cure. In September, NIH released the first systematic and evidence-based report to assist clinicians in delivering care to people living with SCD.
Finally, the CDC has an agency-wide working group to explore opportunities to address unmet needs in SCD research, surveillance, and health education. Through the efforts of this working group and consultation across agencies within HHS, the Department will consider other ways in which it can strengthen its current activities regarding SCD.
We still have much more work to do, but we will continue to make progress — not just to help the tens of thousands of Americans currently living with sickle cell disease, but to ensure that one day, we have a generation where the disease is only something that’s read about in history books.
Thank you for your adding your name to this petition, and for your involvement in the We the People platform.
Follow @WeThePeople on Twitter all day long for a series of Q+As with various Administration officials on the petition responses we released today.
Tell us what you think about this response and We the People.
St. Jude Children’s Research Hospital, Department of Hematology, Comprehensive Sickle Cell Center, developed a series of educational modules “Sickle Cell Transition E-Learning Program (STEP) for Teens with Sickle Cell Disease”. The STEP program consists of videos designed as educational modules with interactive pre and post quizzes. The modules were designed as supplemental educational tools to help teens with sickle cell disease successfully transition from pediatric to adult medical care. There are 6 modules; a short synopsis of each module is provided below:
Module 1 : Sickle Cell and Me
This module provides a general definition of sickle cell disease, and common signs and symptoms of sickle cell disease.
Module 2: Healthy Living and Sickle Cell Disease
This module reviews the importance of nutrition and exercise for a teen with sickle cell disease; the effects of alcohol and tobacco use in a person with sickle cell disease; and the changes that occur during puberty in teens with sickle cell disease.
Module 3: Pain, Infection, and Sickle Cell Disease
This module reviews possible pain triggers, the importance of preventative pain measures, and treatment for mild or moderate pain episodes for a teen with sickle cell disease. Additionally, the video discusses signs and symptoms of infection in a person with sickle cell disease and the importance of knowing the proper response to signs of infection.
Module 4: Other Complications of Sickle Cell Disease
This module provides the basis for a preliminary discussion of some of the complications that may occur in a teen with sickle cell disease: stroke, avascular necrosis, acute chest syndrome, retinopathy, priapism, osteomyelitis, leg ulcers, gallstones, and some renal complication.
Module 5: Genes and Sickle Cell Disease
After reviewing this module, teens with sickle cell disease should be able to discuss the difference between sickle cell disease and sickle cell trait; to describe how genes are related to sickle cell disease; and to be able to name the most common types of sickle cell disease in the United States.
Module 6: Self-Advocacy for Teens with Sickle Cell Disease
The purpose of this module is to help teens with sickle cell disease become self-advocates by learning to communicate effectively; to assert his or her own interests; to speak up; to partner up; and to be firm, positive, and assertive. At the end of the video, there are two scenarios to help practice these skills.
You can access the modules at http://www.stjude.org/sicklecell ; click the link on the left, “Sickle Cell Interactive Teen Education Video” , and you will be directed to the links for the educational modules. The modules are available free of charge. The modules are not intended to take the place of the care and attention of your personal doctor. Our aim is to promote active participation in your care and treatment by providing information and supplemental education. Questions about individual health concerns or specific treatment options should be discussed with your doctor. Development of the modules were funded St. Jude Children’s Research Hospital, ALSAC, and a grant from the Verizon Foundation.