Van Hollen and Booker introduce bill to improve access to care and quality of life for patients with sickle cell disease

June 16, 2022

Introduction ahead of World Sickle Cell Awareness Day on June 19

Today, U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker (DN.J.) introduced the Sickle Cell Care Expansion Act to improve access to medical treatment and the quality of life of people with sickle cell disease (SCD). Senators are introducing the bill ahead of World Sickle Cell Awareness Day on Sunday, June 19.

This bill, which complements legislation introduced earlier this year by Congressman Charlie Crist (D-Fla.), will allow the National Health Service Corps to provide scholarships and loan repayment assistance to those studying the benign hematology – the specialty under which sickle cell disease falls – making specialization in this area an easier financial decision and attracting more providers into the SCD workforce, which currently does not meet the needs of patients no longer receiving pediatric care. In addition, this bill creates competitive grants to increase awareness of sickle cell disease and the resources available to patients. The senators’ legislation builds on the House version by providing more resources to hospitals to fund more support services for young adults transitioning from pediatric to adult care.

“For too long, sickle cell disease has been a neglected disease, leading to a shortage of healthcare professionals who can treat it and limited resources for young adults who have it,” said Senator Van Hollen. “Our bill will help close the gaps in care that sickle cell patients often face, by training more doctors in the field and improving access to comprehensive care and other services for young adults who come out of pediatric care. As promising treatments for this disease advance and patients live longer, we need to ensure that this care is available to everyone who needs it. We should no longer lose colleagues, friends, neighbors or loved ones to this disease – and I am committed to making this vision a reality.

Last year, a member of Senator Van Hollen’s legislative staff, John Amara Walters, died of complications from sickle cell disease at the age of 29. Since then, Senator Van Hollen has stepped up his efforts to defeat the disease and is working with advocacy organizations and Walters’ mother, Kimberley H. Davis Walters, to address the issue.

“This is a long overdue and much needed step towards equity of treatment for the hundreds of thousands of sickle cell patients across the country,” Davis said. “Capacity building is crucial and I commend Senator Van Hollen for his commitment and concrete action with other colleagues to take constructive action that will have a measurable impact in the lives of patients, families, treatment professionals and of their support systems.

“Despite the prevalence of sickle cell disease globally and in the United States, treatment options remain scarce and awareness efforts still lag behind other chronic diseases,” said Senator Booker. “This bill will strengthen efforts to provide comprehensive care for people with sickle cell disease by providing more resources to hospitals, increasing awareness and encouraging aspiring physicians to specialize in the field of hematology.”

“People with sickle cell disease know all too well that the sickle cell community suffers from a lack of resources, especially for adult patients and those who treat them,” Rep. Crist said. “That’s why the Sickle Cell Care Expansion Act is so important, because this community deserves our full support and needs physicians who understand the unique needs of sickle cell patients. I’m thrilled that Senators Van Hollen and Booker have joined me in leading the charge of this effort. Let’s do this and save lives!”

Sickle cell disease results from a genetic mutation that causes an individual’s red blood cells to distort into a C or sickle shape, reducing their ability to carry oxygen throughout the body. It affects approximately 100,000 people in the United States, the overwhelming majority of whom are black. Maryland has the 5e largest population of SCD patients to approximately 4,860. Sickle cell disease has been primarily considered a childhood disease, as most patients did not survive into adulthood until recently as treatments and therapeutics have progressed. As such, there are fewer specialists to treat adult patients with sickle cell disease than there are pediatric specialists, which is one of the main reasons why Americans with sickle cell disease between the ages of 18 and 30 are more likely than any other age group to end up in hospital multiple times because of their condition.

In summary, the Sickle Cell Care Expansion Act:

  • Develops the National Health Service Corps to provide scholarships and loan repayment assistance to those studying benign hematology;
  • Provides for the creation of competitive grants that would increase awareness of sickle cell disease and the resources available to people with sickle cell disease; and
  • Builds on the House version by funding grants to hospitals that provide comprehensive sickle cell care to further fund support services, including mental health, for young adults aged 18-29 transitioning from pediatric care to adults.
  • Grants can also be used by these hospitals to provide scholarships and programs to train more sickle cell care specialists for the needs of young adults with sickle cell disease.

This legislation has been endorsed by the American Society of Hematology (ASH), Sickle Cell Disease Association of America (SCDAA), National Black Nurses Association, Johns Hopkins Medicine, Maryland Sickle Cell Disease Association (MSCDA), Children’s National Hospital and Sick Cells. .

“The American Society of Hematology commends Senator Van Hollen for introducing this bill in the Senate to accompany and build on the progress of Rep. Crist’s bill in the House of Representatives. The bill aims to improve access to care for people living with sickle cell disease (SCD) by increasing the number of providers serving the SCD community and improving education, training and outreach efforts in community organizations , universities and hospitals. As a Society long committed to improving care for people with SCD, we recognize that transitioning from pediatric to adult care can be difficult, so we are pleased to see that Senator Van Hollen’s bill provides additional provisions to support members of the SCD community during this transition,” said ASH President Dr. Jane Winter.

“A major barrier to obtaining high-quality care for sickle cell warriors is the lack of access to medical professionals, such as hematologists, who are trained to treat sickle cell disease. Many of our warriors are regularly required to choose between commuting for hours to see a specialist and receiving inadequate care No one should have to travel out of state or travel great distances in state during a crisis to be seen by a hematologist who understands his condition. The Sickle Cell Disease Association of America believes that the Sickle Cell Care Expansion Act will significantly increase the number of qualified physicians who specialize in sickle cell disease,” said SCDAA President and CEO Regina Hartfield.

“Members of the National Black Nurses Association (NBNA) support this effort to ensure that sufficient numbers of qualified physicians, advanced nursing staff and scientists are available to work with the sickle cell (SCD) population. SCD affects 100,000 Americans; the majority of patients are African American or Hispanic, and one in 500 African American newborns has the disease or trait. Thanks to advances in treatment, patients are living longer. However, as these patients age outside the pediatric health care system, very few adult physicians and providers understand the treatment needs of these patients. Further education in medical and nursing schools is needed to improve the quality of life for the SCD population across the lifespan,” said NBNA President Dr. Martha A. Dawson.

“People living with sickle cell disease need to be seen and treated by expert sickle cell clinicians. This bill will provide much-needed financial support to increase the number of experts to meet the needs of this historically underserved community,” said Sophie Lanzkron, MD, MHS, director of the Adult Sickle Cell Center at Johns Hopkins School of Medicine

“Organizations such as MSCDA work every day to raise awareness of SCD with the goal of improving the lives of those affected by SCD. challenges facing the SCD community. MSCDA wholeheartedly supports Senator Van Hollen’s efforts and stands ready to assist in any way we can to make the goals of the Sickle Cell Care Expansion Act a reality,” said Derek Robertson, president of the Sickle Cell Association of Maryland.

“Children’s National Hospital and its Comprehensive Sickle Cell Program enthusiastically support the Sickle Cell Care Expansion Act as a supplement to HR Bill 7177. Increase the number of sickle cell providers, increase grants to hospitals to provide comprehensive care and support the education of professionals in benign hematology will help close the health disparities experienced by patients and families living with sickle cell disease.We look forward to supporting and partnering soon to this important and necessary legislation on sickle cell disease”, said Andrew Campbell, MD, director of the comprehensive sickle cell disease program at Children’s National Hospital.

“Sick Cells is pleased to support the 2022 Expansion of Sickle Cell Care Act. We hope this will be the first in a series of innovative approaches to improve care and quality of life for people with sickle cell disease across the country,” said Sick Cells co-founder Ashley Valentine.

Text of the Sickle Cell Care Expansion Act is here.

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