Alliance Launches to Advocate for US Policies to Improve Patient Care

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by Mary Chapman |

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A public policy alliance has launched to advocate for federal policies that address the “crisis of care” facing the approximately 100,000 sickle cell disease (SCD) patients in the U.S.

The ad-hoc alliance, called the Sickle Cell Disease Partnership, comprises more than a dozen groups representing patient advocates, healthcare professionals, health insurers, and the biopharmaceutical industry. The announcement of its formation was timed to World Sickle Cell Day, held June 19.

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Specifically, the partnership calls on policymakers to implement proposals in a report, “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action,” by the National Academies of Sciences, Engineering, and Medicine (NASEM). Policy recommendations in the report seek to advance access to care and treatment and improve patient outcomes.

“For too long, our nation has turned a blind eye to the devastating toll of sickle cell disease on the lives of 100,000-plus Americans and their families. Today, one in 13 African Americans carry the trait for sickle cell, meaning their children are at risk for having the disease,” Brett Giroir, MD, the partnership’s senior adviser, said in a press release.

“The majority of people living with Sickle Cell Disease lack basic access to care, while our health care infrastructure and investments in research have failed to keep pace with the desperate need for treatment,” he added. “It’s time for our nation’s leaders to prioritize individuals with Sickle Cell Disease and implement the recommendations of The National Academies’ 2020 Strategic Plan and Blueprint for Action.”

The partnership has issued a call to action to lawmakers and the presidential administration to work together to put in place federal recommendations for programs, policies, and research outlined in the NASEM report.

Those recommendations include:

  • Establishing a national system to gather and link data to characterize the burden of SCD, outcomes, and the needs of patients throughout their lifespans.
  • Establishing organized systems of care that ensure patient access to clinical and non-clinical support services.
  • Strengthening the evidence base for interventions and disease management, and implementing widespread efforts that monitor care quality.
  • Improving disease awareness and strengthening advocacy efforts through targeted and strategic education partnerships across key stakeholders, including the U.S. Department of Health and Human Services.
  • Addressing barriers to accessing current SCD therapies and those being developed.
  • Implementing efforts to advance understanding of the full impact of SCD on individuals and society.
  • Creating a research agenda to inform effective programs and policies.

“While no one organization or entity can fully address historical barriers and existing challenges, there is an opportunity and a need across our nation’s healthcare system — in both the private and public sectors — for leaders to collaborate to improve the health of all individuals with SCD,” the alliance states.

“As a payer, regulator, funder of research and training, and provider, the federal government has a responsibility and an opportunity to help improve the lives of individuals with SCD. There are concrete, actionable opportunities to support timely, sustained access to high-quality, coordinated, and comprehensive care and access to future treatments.”