US Nonprofits Team Up to Bolster Advocacy Efforts

Two U.S. nonprofits are partnering to tackle legislative issues that benefit sickle cell disease (SCD) patients and their families.

The partnership between the Sickle Cell Disease Association of America (SCDAA) and the Sickle Cell Community Consortium (SCCC) will include collaborating on the association’s annual Advocacy Day efforts, and on advocacy training. The two organizations will also work together to develop federal legislative priorities.

The groups “share the same mission of improving the lives of people with sickle cell disease,” Beverley Francis-Gibson, president and CEO of the SCDAA, said in a press release. “We’re excited to work with the consortium, which brings a range of organizations, advocates, and advisors that will help us achieve our legislative goals together.”

The consortium was established in 2014 to harness and amplify the patient voice in legislation and other matters. It consists of sickle cell community-based organizations, patient and caregiver advocates, community partners, and healthcare and research advisors. The consortium establishes strategies and partnerships to address community needs.

Meanwhile, the aim of the SCDAA is to advocate for patients and their families and to empower community-based organizations to raise disease awareness and enhance patients’ quality of life, all while advancing the search for a cure. The inherited blood disorder affects approximately 100,000 U.S. residents, occurring in about 1 out of every 365 Black or African-American births.

The SCDAA’s annual Advocacy Day is an opportunity for patients and caregivers to learn how to advocate for issues that are important to them. Participants are apprised of key legislative issues affecting families, including more research funding, better healthcare access, and increased sickle cell education and awareness. This year’s Advocacy Day was held virtually April 20–21. Individuals representing the organization’s 53 member organizations and affiliates from 29 states were invited to participate.

One major advocacy push that has borne fruit was for the Sickle Cell Treatment Act of 2018, which was signed into law. It committed the federal government to continue funding research for more and better therapies, and authorized the Centers for Disease Control and Prevention to award surveillance grants to states, academic institutions, and nonprofit organizations.

The SCDAA also has the National Sickle Cell Advocacy Network, made up of patients and families seeking to advocate for and educate fellow patients and families. Its Teen Ambassador Contest promotes the development of the next generation of advocates.

In 2014, the organization formed the Sickle Cell Disease Congressional Caucus, which focuses on increasing legislative support for what it calls a largely under-funded disease.