by Maureen Groppe
WASHINGTON – A week before Indiana teenager Ryan White died of AIDS in 1990, Massachusetts Sen. Ted Kennedy called his hospital room.
“This is a call I think you should take,” Elton John, who had become a close family friend, told Ryan’s mother.
Kennedy was asking permission use Ryan’s name on legislation he was trying to pass to help people living with HIV/AIDS.
Jeanne White-Ginder thought it was a nice gesture, not realizing how significant the Ryan White Care Act would become.
Now, more than two decades after the law was passed in part to provide medical care for low-income HIV/AIDS patients, White-Ginder and other advocates are concerned about the program’s future.
“We have a chance to really do something about this disease if we could get everyone to stay in treatment,” White-Ginder said at a news conference Wednesday.
The program was not renewed by Congress when the authorizing legislation expired last year. President Barack Obama’s administration is still supporting $2.3 billion in funding for the fiscal year that starts in October. But the annual spending bill that funds the Ryan White HIV/AIDS program is in limbo.
Lawmakers, including California Rep. Henry Waxman, who helped pass the initial legislation, and other supporters, such as Iowa Sen. Tom Harkin, are leaving Congress at the end of the year.
And the Affordable Care Act, which provides health coverage options for people who couldn’t afford insurance, has raised questions about whether the program at least needs changes to better target its resources.
As a result, White-Ginder is back in the halls of Congress, trying to continue her son’s legacy.
Ryan White was born in Kokomo with hemophilia and contracted AIDS through a blood-clotting agent after a transfusion when he was 13.
His became an example of how anyone could contract the disease, and his story was recounted in books, on TV and in movies.
After Ryan’s death, Kennedy asked White-Ginder to speak to senators about the need for legislation to help AIDS victims.
“I’m sure when Jeanne came to Washington in 1990 to help pass the original program, she never dreamed of its success and its critical importance to people living with HIV and AIDS,” said Carl Schmid, deputy executive director of The AIDS Institute. “Over the years it has changed, as science and the times have progressed. Now we are at a juncture of another change.”
Although the ACA increased coverage options, only about half the states are expanding Medicaid, the joint state-federal insurance program for the poor.
Some Ryan White program funding may need to be targeted to those states that aren’t expanding, Schmid said.
The law also provides subsidies for low- and moderate-income people to help buy coverage on the private market. But those plans still can include high out-of-pocket expenses.
Schmid pointed to Massachusetts, which expanded health care early, as an example of how Ryan White program funding still is helpful. Federal funding that had been used to directly purchase drugs for HIV/AIDS patients is now helping pay for insurance premiums and drug co-payments. That has allowed the funding to help nearly twice as many people, he said.
“The Ryan White program is still needed now and in the future, even as health reform is implemented,” Schmid said.
Michael Ruppal, executive director of The AIDS Institute, said treating those with HIV also reduces the spread of the disease by suppressing the virus.
“We actually have a chance to end this epidemic,” he said.
Deputy Executive Director
The AIDS Institute