ASH Advocates to Improve Maternal Health in Hematology
Throughout the past year, ASH has greatly expanded its efforts to improve maternal health care outcomes in hematology. While much attention has been focused on maternal health in the past several months due to the Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization, ASH’s efforts in this area came as a direct response to ASH member feedback noting that maternal morbidity and mortality closely intersect with hematology, and that it was important for the Society to be more engaged in this important public health issue.
Starting in August of 2021, the ASH Executive Committee declared that the Society would begin exploring new ways to help improve maternal health care outcomes in hematology. This announcement led to the creation of the Working Group on Maternal Health and its mandate to find ways to enhance current activities and establish new programs. To learn more about how the Society is expanding its role in this issue, The Hematologist spoke with the Chair of the ASH Working Group on Maternal Health, Dr. Sarah O’Brien from Nationwide Children’s Hospital in Ohio, and the Chair of the ASH Committee on Government Affairs, Dr. Jennifer Holter-Chakrabarty from the University of Oklahoma Medical Center.
“The need is real, and we’ve seen the gaps in care that many of our patients face,” explained Dr. O’Brien. “That is why it is so crucial that ASH has decided to take a leading role in this important issue. You can already see a lot of progress that the Working Group on Maternal Health has made since its founding just a short while ago.”
Some of these new initiatives include the development of the soon-to-be-published Maternal Health Compendium, a collection of articles from Blood and Blood Advances focusing on maternal morbidity and mortality in hematology. The Working Group on Maternal Health has also collaborated with the ASH Subcommittee on Clinical Trials to help try to solve some of the challenges of recruiting women of reproductive age into clinical trials as well as the difficulties of testing new therapies in pregnant women.
Another major area of work that ASH has undertaken is raising awareness on Capitol Hill and state capitals about maternal health and hematology issues, including weighing in on policies that interfere with the patient-physician relationship. “There are a lot of misconceptions out there, and we’ve been working hard to educate policy makers,” said Dr. Holter-Chakrabarty.
In October of 2021, ASH and several partner groups cosponsored a virtual congressional briefing, Their Lives Depend on Us: Rising to the Challenge of Providing High Quality, Evidence Based Reproduce Care for Women with Sickle Cell Disease. The briefing presented an overview about the current state of reproductive health care for women with sickle cell disease and included a personal story of a mother’s pregnancy journey with the disease, as well as outlining proposed policy strategies to improve outcomes. Since the congressional briefing, ASH has continued to work alongside other organizations and has forged relationships with other medical societies and patient groups, including the American College of Obstetricians and Gynecologists and the Foundation for Women and Girls with Blood Disorders. These partnerships help increase the reach of ASH’s message and provide opportunities to engage with these groups in states where maternal health care is under threat.
ASH has also been working closely with federal agencies, including leaders at the Centers for Disease Control and Prevention (CDC). Earlier this year, ASH and CDC leaders met to discuss opportunities to ensure the hematologic perspective is included in cross-CDC discussions about maternal health and ways the CDC’s Sickle Cell Disease Data Collection program could be expanded to close knowledge gaps related to the impact of sickle cell on women’s health.
More recently, ASH released a policy statement “The Right to Maternal Health Care in Hematology,” which outlines the many blood disorders that put pregnant women at risk of severe, even fatal, health complications. The statement supports the maternal health rights of women with hematologic conditions and underscores the importance of the patient-physician relationship by stating that access to evidence-based medical information and lifesaving medical options, including termination of pregnancy, is a maternal right.
Since July, ASH advocates have sent nearly 800 letters to lawmakers at both the federal and state level in support of maternal health rights and the need to protect the ability of health care professionals, including hematologists, to provide medical care and counsel to their patients. Dr. Holter-Chakrabarty underscored that the Society’s advocacy for maternal health this year would not have been possible without ASH members writing, calling, and meeting with their lawmakers. “There are so many areas of maternal health that need improvement, and we need the help of every ASH member to reach out at every level of government,” she said.
It is important for ASH members to remind their elected officials about the importance of maternal health care and the needs of hematology researchers, clinicians, and patients. Members can participate in the Society’s advocacy efforts by joining the Grassroots Network to receive regular updates and information about how to contact their members of Congress. Grassroots Network members also receive the monthly Advocacy Update and periodic Action Alerts encouraging members to contact their lawmakers whenever legislation affecting hematology is introduced or when a key vote is approaching on Capitol Hill. Additionally, ASH members have access to the Society’s Advocacy Toolkit to help prepare members for state and federal advocacy to protect access to maternal health and the physician/patient relationship. For more information on how to get involved visit www.hematology.org/advocacy.
“ASH makes it easy to be engaged and there are quick ways to remind your lawmaker about why you sent them to Washington to represent you.” Says Dr. O’Brien, “providers need to speak up on behalf of our patients and our practice.”
Mark Your Calendar for Maternal Health Sessions at the ASH Annual Meeting
Maternal health will be represented at the 2022 ASH Annual Meeting in New Orleans. A selection of some of the programs featured at this year’s annual meeting can be found below. Attendees are encouraged to check out these sessions whether attending in person or virtually. For more information and to register visit www.hematology.org/meetings/annual-meeting.
Maternal Health in Hematology Special Interest Session — This session covers the current political climate around the right to maternal health care and well-being as well as ways to be an effective advocate. Attendees will examine advocacy-related case studies highlighting ways to bring attention to hematology and maternal health research and practice issues affected by public policy decisions. The session will also cover the current efforts and future opportunities for engagement by members of the hematology community. Monday, December 12, 2022, 10:30 a.m.-12:00 noon, Ernest N. Morial Convention Center, Hall E
Grassroots Network Lunch — This session serves as a forum for interested members to learn how they can participate in ASH’s advocacy efforts, communicate with Congress, and discuss the Society’s legislative and regulatory priorities. The keynote speaker for this year’s event is Dr. Veronica Gillispie-Bell, a board-certified obstetrician and gynecologist at Ochsner Health System in New Orleans. Dr. Gillispie-Bell will address the important connection between hematology and obstetrics/gynecology and will also provide her perspective regarding ways ASH members can be involved at the state and local levels to effect change aimed at improving health outcomes. Saturday, December 10, 2022, 11:15 a.m.-12:15 p.m., Hilton New Orleans Riverside, St. James Ballroom
Women in Hematology Reception — This networking reception provides a space where all can gather in an informal environment, interact with peers, connect with role models and potential mentors, and become inspired and empowered to overcome the challenges women face in hematology. This year’s keynote speaker is Dr. Arghavan Salles. Monday, December 12, 2022, 7:30-9:30 p.m., Hilton New Orleans Riverside, Jefferson Ballroom
Education Program Session: Obstetric Management and Complications in Sickle Cell Disease — The session will offer a detailed examination of the results from a pooled analysis of recent obstetric and hematology studies conducted in low- and middle-income settings, showing the disparities in maternal death faced by women with sickle cell disease. Sunday, December 11, 2022, 4:30-6:00 p.m., New Orleans Convention Center, Room 243-245