Legislators to meet with Sickle Cell Disease Association at first legislative advocacy day at Capitol today
LANSING—Senate Minority Leader Jim Ananich (D-Flint), Senator Bert Johnson (D-Detroit) and the Michigan Senate Democrats recently introduced legislation to promote sickle cell awareness at the state and federal level, Senate Bill 398 and Senate Resolution 71. Today, June 18th, members from the Sickle Cell Disease Association are holding their inaugural legislative advocacy day at the State Capitol, including meeting with legislators to promote the passage of these bills.
“I have been devoted to addressing sickle cell disease since coming to the Legislature, and hope we can finally see progress on this simple legislation to promote sickle cell awareness,” said Senator Ananich. “I appreciate the efforts of the Sickle Cell Disease Association and look forward to working with them to help curb this disease.”
Since Senator Ananich first took office as a Representative, he’s been pushing for the creation of a Sickle Cell Disease Awareness campaign, which has already been implemented in other states like Virginia. He reintroduced legislation this year, SB 398, to create an awareness campaign through the Michigan Department of Health and Human Services to promote sickle cell awareness and treatment methods, and to develop a program to coordinate services for sickle cell disease. SB 398 is assigned to the Senate Health Policy Committee.
In Senator Ananich’s district, Diplomat Specialty Pharmacy partnered with Hurley Hospital & UM-Flint to do a pilot program to increase medication compliance among sickle cell sufferers (medication is unpleasant to take so many stop taking it and experience worsened pain episodes and an upsurge in other painful symptoms).
“Sickle cell disease inordinately affects African-Americans and more specifically, nearly 5,000 babies are born with the sickle cell trait each year,” Senator Johnson said. “I am committed to helping get the word out about sickle cell across Michigan, through awareness, identification and treatment to people of all races and economic standing. With these bills, we have the power to establish a state-based Sickle Cell Awareness campaign, as well as improve the much-needed action on a new federal act to address sickle cell.”
Senator Johnson has introduced Senate Resolution 71, which calls on Congress to pass HR 1807, the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act of 2015. The Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act is meant to replace the Sickle Cell Treatment Act, which expired in 2009 and has been underfunded for most of its existence (it was enacted during the Nixon Administration).
“As a mother of a son with sickle cell disease, I have spent every day for the past 16 years worrying about my child. If a classmate sneezes near him, I worry. If it’s too hot or cold outside, I worry—you never know when and how the disease will attack,” said Kelly Garrett of Mothering Justice. “When I found out that the Sickle Cell Disease Association of Michigan was holding their first advocacy day in Lansing and that there are Senators in Michigan looking to raise awareness of this disease, I was overjoyed. Finally this disease is beginning to get the attention that it deserves.”
In Michigan, there are roughly 2,800 people with sickle cell disease and 140,000 people in Michigan carry the sickle cell trait. Sickle cell is a chronic, lifelong disease with an estimated national health care impact of $2 billion. In the United States, about 1 in 13 African American babies is born with sickle cell trait and 1 in every 365 black children is born with sickle cell disease. There are also many people with this disease who come from Hispanic, southern European, Middle Eastern, or Asian Indian backgrounds.
Sickle cell receives very little attention in comparison to other blood disorders, with terribly inadequate research funding for treatment methods. Children in Michigan can get specialty coverage for sickle cell disease through Children’s Special Health Care Services, but it drops once they turn 19. This makes it very difficult to transition into adulthood when they no longer get specialty care. There are very few health care providers in Michigan that specialize in sickle cell, so even adults with insurance have a difficult time getting the care they need.