‘It Takes a Village … and We Need a Village’
Report on Sickle Cell Disease Suggests That Current State of Treatment and Care is Inadequate and Improvements Are Needed
“It takes a village …” was the theme running throughout the September 6 press conference that launched the Sickle Cell Disease Coalition – a partnership whose goals are to amplify the voice of the sickle cell disease (SCD) community, promote SCD awareness, and transform SCD care both in the United States and around the globe. The event took place at The Knight Conference Center of the Newseum in Washington, DC, where ASH, along with more than 20 other member groups, released the State of Sickle Cell Disease: 2016 Report. This report focused on four priority areas: access to care, training and professional education, research and clinical trials, and global health.
In addition to these priorities, ASH has committed to developing and implementing up-to-date guidelines for managing acute and chronic complications of SCD and to educate health-care providers in a variety of settings – including hematologists, primary-care providers, and hospitalists – to recognize and properly respond to SCD symptoms in their everyday practices. The Society is working closely with the Emergency Department Sickle Cell Care Coalition to support their efforts to improve emergency care of individuals with SCD.
ASH is also exploring the development of a consortium of African countries to institute a population-based registry study for newborn screening and early intervention. The Society will continue to encourage SCD research through advocacy and has developed research priorities in SCD and sickle cell trait to encourage the study of unaddressed questions that could impact these conditions. ASH continues to work with Congress and federal agencies to enhance and expand federal sickle cell disease programs.
“There are unique challenges that people with SCD face. For example, the transition from pediatric to adult care can be especially difficult, and many people struggle to find health-care providers with comprehensive knowledge and expertise to provide proper care, especially in rural communities,” said ASH Vice President Alexis Thompson, MD, MPH, of the Ann and Robert H. Lurie Children’s Hospital of Chicago. “Given recent advances in research and treatment, there is enormous opportunity to transform the way we care for people suffering from SCD and conquer this disease.”
The Coalition will provide a platform to encourage stakeholders to work together to develop and implement important projects and activities that will ultimately help the SCD community and improve outcomes for individuals with the disease. Some examples of these projects include:
- The American College of Emergency Physicians is supporting the Emergency Department Sickle Cell Care Coalition, a collaborative group that is dedicated to the improvement of the emergency care of individuals with SCD in the United States.
- The Food and Drug Administration recently launched a campaign to encourage minorities to participate in clinical trials for all medical conditions. The initial focus of the campaign is a series of videos to help the SCD community become “Clinical Trial Champions.”
- The Sickle Cell Disease Association of American continues to work with stakeholder groups as they further implement Get Connected, a patient-powered registry program, as well as develop many new initiatives such as programs to expand the use of community health workers in SCD care and increase patient engagement in clinical trials.
- This past spring, the Centers for Disease Control and the Association of Public Health Laboratories released a guidance document on Hemoglobinopathy Laboratory Testing and Follow-up Techniques, which aims to strengthen newborn screening and diagnostic testing capabilities in the United States and around the globe by offering examples of best practices.
- The National Marrow Donor Program was instrumental in influencing the Centers for Medicare & Medicaid Services to modify the agency’s existing National Coverage Determinations Manual to expand national coverage for allogeneic hematopoietic stem cell transplantation for three hematologic conditions, including SCD.
To date, 31 organizations have joined the Sickle Cell Disease Coalition. ASH is asking these organizations to pledge to take on activities or programs that will move the needle on SCD. Advocacy organizations, government agencies, companies, policymakers, and foundations can send an email to [email protected] to share how they plan to help ASH transform SCD.
Read the full report, stay up to date with coalition activities, and view a comprehensive list of coalition members at scdcoalition.org.
More About the Four Priority Areas
Access to Care: Developing evidence-based guidelines and coordinated health-care delivery models to ensure that individuals with SCD can access quality care regardless of age, location, and socioeconomic status
Training and Education: Increasing the number of providers who are able to care for those with SCD by educating established clinicians to treat symptoms and complications while encouraging medical trainees to pursue careers in SCD care
Research and Clinical Trials: Investing in strategies to expand use of existing treatments, developing novel therapies, and strengthening curative options while accelerating their discovery
Global Issues: Expanding newborn screening and early intervention programs, increasing SCD awareness and education, and improving access to quality care in developing regions
ASH Commits $3 Million Annually to Help Preserve Critical Blood Disease Research
Established in 2012 as short-term support for researchers affected by federal funding shortfalls, the ASH Bridge Grant program is now a permanent Society offering. The ASH Bridge Grant program started in 2012 as a short-term pilot study to support researchers affected by federal funding shortfalls. In the years since, more than 80 researchers have received these one-year awards. The long-term goal of the award is to help sustain recipients’ research and contribute to their retention in hematology investigation.
The National Institutes of Health (NIH) is the world’s top provider of medical research grants. However, more than a decade of flat funding and spending reductions have drastically reduced the agency’s ability to fund innovative research. While NIH has received funding increases in recent years, its ability to back high-scoring proposals remains severely limited due to the unpredictable nature of the congressional budget process. This has resulted in extraordinary competition for NIH research project grant (R01) awards, which prevents many worthy projects from receiving necessary financial support.
ASH established the Bridge Grants as an innovative $9 million, four-year pilot initiative to ensure that advancements in treating hematologic diseases would continue in spite of inconsistent federal funding. More than half of Bridge Grant recipients awarded from 2013 through 2014 have subsequently received R01 grants. This demonstrates the value of this program in allowing critical research to continue.
There are two award cycles each year, and ASH membership is required at the time of application for a Bridge Grant and throughout the award period.
The eighth round of the award cycle is currently open, with applications due no later than October 31, 2016, at 11:59 PDT.
For more information about eligibility criteria and supported research, visit hematology.org/Awards/Career-Training/407.aspx.
New Hematologist Podcast Focuses on Theranos Controversary
A new podcast for The Hematologist: ASH News and Reports is available online. Tracy George, MD, and Rama Gullapalli, MD, PhD, of the University of New Mexico School of Medicine, have a conversation with The Hematologist Editor-in-Chief Jason Gotlib, MD, MS, of the Stanford School of Medicine, about lessons for clinicians and pathologists learned from the Theranos controversy, as written about in their recent Op-Ed available via hematology.org/thehematologist/Op-Ed/6540.aspx.
Access all podcasts and videos from The Hematologist on the ASH website at hematology.org/TheHematologist/Multimedia. Make sure to subscribe via SoundCloud (soundcloud.com/ash_hematology) and iTunes to stay up to date with new monthly installments.