Lupus advocates take wait-and-see stance ahead of policy summit
Policy moves by a foundation advocating on behalf of people living with lupus will be based on what happens in Congress.
The Lupus Foundation of America will hold a policy summit in Washington, D.C., next month, during which it will argue that those with lupus should not be discriminated against because of a pre-existing condition. May is Lupus Awareness Month.
"The specific issues on which we advocate during the summit in late June will depend upon the state of the health care debate on issues such the Affordable Care Act, fiscal year 2018 appropriations and the reauthorization of the Prescription Drug User Fee Act," Mary Crimmings, vice president of marketing and communications for the Lupus Foundation of America, said.
Crimmings told Patient Daily that discussions will revolve around the organization's priorities, including increasing funding for lupus research and education and policies to advance the development of new treatments for the disease.
These discussions will also include "protecting access to affordable, quality health coverage and care, and ensuring that people with lupus are not discriminated against because they have a pre-existing condition."
New federal funding for research into lupus has been available, including a Department of Defense program specifically looking at the disease.
"This new wave of federal funding is an important step forward in the fight against lupus as it will allow for the continuation of vital lupus programs to raise awareness, increase knowledge and enhance disease management skills of those with lupus and their health care providers," Crimmings said. "More specifically, we will see the establishment of a new lupus-specific research program at the Department of Defense that will be dedicated to solving the cruel mystery of the disease, identifying what causes the disease, and finding new treatments that can improve the lives of our military heroes with lupus and all Americans living with the devastating disease."
Crimmings said that the funding will allow researchers to examine the effect the disease has on people's lives.
"The funding will also help advance clinical trials and the development of new treatments by supporting the implementation of a clinical trial education action plan that will help speed enrollment in clinical trials," she said. "In addition, researchers will be able to examine the costs associated with lupus and its impact on quality of life, which will help people with lupus to better manage the disease."
Crimmings said Lupus Awareness Month is a time to bring greater awareness to a "life-changing and life-altering" disease. It Is the time of year to bring great awareness to the "cruel mystery that is lupus," and rally the public, she said.
"Our goal this year is to urge people to join the fight against lupus by going beyond awareness and raising funds for lupus research and education," Crimmings said. "This can be anything from signing up for one of the 70 Walk to End Lupus Now events across the country, urging family members and friends to make a donation help advance our mission or hosting a fundraiser."
Hundreds of thousands of supporters across the country are involved in Lupus Awareness Month, with the foundation providing tools and resources to promote lupus awareness and raise funds for lupus research and education.
Individuals can learn more about how they can get involved by visiting www.lupusawarenessmonth.org. The policy summit takes place at the Hyatt Regency in Washington, D.C., June 25-27.
Organizations in this story
LUPUS Foundation of America 270 Farmington Avenue, Suite 218 West Hartford 06032