American Society of Hematology

ASH Sickle Cell Disease Initiative Fund

The ASH Sickle Cell Disease (SCD) Initiative addresses the state of SCD treatment in the United States and around the world by uniting people who care about SCD to improve care, early diagnosis, treatment, and research. This is the first time that ASH is undertaking an initiative in support of a single disease.

What Is SCD?

Sickle cell disease is a devastating and painful condition affecting nearly 100,000 Americans of all ages and millions of people worldwide. An inherited, lifelong blood disorder, SCD produces abnormal hemoglobin which causes red blood cells to become rigid and sickle-shaped. Sickle cells die early, which causes a constant shortage of red blood cells. Sickle cells also get stuck in blood vessels and then block blood and oxygen flow to specific organs. This causes severe pain and other serious problems. SCD complications include stroke, acute chest syndrome, organ damage, other disabilities, and in some cases premature death.

  • Approximately 1,000 children are born with SCD in Africa every day; more than half will die before they are five years old.
  • In resource-poor countries, 90 percent of children with SCD do not survive to adulthood, and treatment today is akin to what it was in the United States before 1970.
  • Stroke is a devastating complication of SCD that occurs in young children. Approximately 30 percent of children with SCD will have either an overt stroke or silent infarct. There are strong links between stroke and cognitive deficits which often lead to lifelong learning and physical challenges.

Why Is SCD a Problem?

People with 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. In the past, children with SCD rarely lived to adulthood. Although the survival rate has improved substantially, many health-care providers are not equipped to treat adult patients with SCD, so getting appropriate health care is a challenge. Additionally, because many people with SCD frequently require strong painkillers to treat pain crises, they are often misunderstood as drug-seeking and are not taken seriously. For this reason, many people with SCD distrust the health-care system and do not receive the care they need.

  • Because SCD is a complex illness that affects multiple organ systems, few physicians specialize in SCD or can assume primary responsibility for a patient’s care.
  • More than half of surveyed physicians report having no patients with SCD in their practices.
  • Less than half of physicians are comfortable managing the pain of those with SCD.

Although funding for SCD research has increased dramatically in the past 25 years, it is still not on par with research funding for other diseases that affect far fewer people.

What Is ASH Doing?

The ASH Foundation seeks to raise $500,000 in private charitable support to develop specific programs that focus on:

  • Raising awareness and encouraging action on SCD
  • Providing training and education for hematologists and other health-care providers who may treat people with SCD
  • Stabilizing funding of SCD programs in the United States
  • Improving global standards of care, research programs, and access to clinical trials for people with SCD
  • Sustaining a workforce of hematologists and other health care professionals to optimally treat patients with SCD throughout all of its stages: from early diagnosis, through childhood, and into adulthood

A new Sickle Cell Disease Coalition was initiated by 31 organizations partnering to collaborate on key priorities. The Coalition is issuing a call to action, inviting government agencies, patient organizations, health-care providers, public health organizations, researchers, foundations, and others in the private sector to join us in making a commitment to ensuring that people with SCD have access to state-of-the-art clinical care.

How You Can Help

ASH is convening key partners to help address the global burden of SCD, but we can’t do this without you, so we’re calling YOU to action, asking YOU to get involved now and partner with us to ensure that people with SCD have access to state-of-the-art clinical care. Charitable support for the ASH Sickle Cell Disease Initiative Fund will help ASH pursue key programs making a positive impact on access to SCD care, research, and global issues.

Because of strong institutional support from ASH, 100 percent of all charitable donations to the ASH Foundation directly benefit programs sponsored by ASH and are tax deductible as allowed by law.

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