A bipartisan bill aimed at fighting sickle disease was signed into law by President Donald Trump on Tuesday night.
The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 was introduced by Sens. Cory Booker, D-N.J., and Tim Scott, R-S.C., in February and passed in the Senate in October.
The bill also reauthorizes a current sickle cell disease prevention and treatment program for nearly $5 million each year over the next five years.
“Even though sickle cell disease is the most common inherited blood disorder in our country, research and treatment lags behind that of other chronic illnesses,” Booker said in a statement. “Our legislation will help find new ways to improve the lives of people suffering from sickle cell disease. It’s time we start treating sickle cell disease as a serious and debilitating illness and allocate adequate resources to monitoring, researching, and treating it.”
According to the Centers for Disease Control and Prevention, sickle cell affects 100,000 Americans — predominantly African-Americans, Latinos and other minority groups. One in 365 African-American babies are born with the inherited lifelong disease in which red blood cells that are normally round and disc-shaped are instead crescent or sickle shaped.
These sickle-shaped cells are not flexible, and they can stick to the walls of blood vessels, causing blockages that stops the flow of blood to organs or tissues. This is the hallmark of the painful, sometimes debilitating, sickle cell pain crises that often require a visit to the emergency room or hospitalization. The crises can occur without warning or can be triggered by stressors such as cold weather, dehydration or pregnancy.
The National Institutes of Health was funded an estimated of $115 million in research of the disease this year, $6 million more than in 2017.
Beverley Francis-Gibson, president and CEO of Sickle Cell Disease Association of America, called the bill “a victory.”
“The impact the legislation will have is tremendous for the sickle cell community,” she told NBC News in a phone interview. “It authorizes prevention and treatment grants that will help a lot of the surveillance work that we have already started across the country. We’re really excited about the possibilities it will present for families and organizations across the country.”
Grammy-nominated songwriter and producer Nana Kwabena, who works with artists such as Janelle Monáe and Jidenna, was diagnosed with sickle cell disease as a child. He has worked to increase funding for research and raise awareness of the disease through his nonprofit organization AllOneBlood. He said the act was a “necessary step forward.”
“It’s great to finally see sickle cell get the support that it needed on a government level,” he told NBC News. “It’s been awhile since we’ve seen actual legislation pass where sickle cell has been a priority.”
When asked if what was set forth in the bill was enough, Kwabena and Francis-Gibson said more awareness was key.
"It’s about amplification," Kwabena said. "There’s great work being done and there are voices that all they need is right now is a microphone and an amplifier, and they need it to be in front of people in a way where they’re paying attention on a larger critical mass level.”
CORRECTION (Dec. 24, 2018 6:47 p.m. ET): An earlier version of this article incorrectly described the share of African Americans with sickle cell disease. One in 13 African-American babies are born with sickle cell trait, not with sickle cell disease. One in 365 African-American babies are born with sickle cell disease.