With the 20th anniversary of the Ryan White Care Act next year, Jeanne White-Ginder thought there would have been a cure for AIDS by now.


"I was just a mom, but because of the misunderstood disease called AIDS my life changed overnight," she said.


White-Ginder was invited by the Open Door Clinic of Aurora and Elgin on Wednesday to speak at Waubonsee Community College about the reauthorization of the Ryan White Care Act, named in honor of her son, Ryan.

Ryan died of AIDS in 1990 at age 18, after waging a courageous battle for his life.

White-Ginder, formerly of Indiana, said her son in 1984 was one of the first children and first hemophiliacs to contract AIDS through a blood product once used to treat hemophilia.

"At that time, people thought a person did something wrong to get AIDS. We definitely felt that discrimination," White-Ginder said.

The mother gave an hourlong address from the heart about her son, who was given three to six months to live by his doctors after being diagnosed with AIDS at age 13.

"People think his fight to go to school was what made him famous, but it was his will to live, the smile on his face and his giving life the best shot he could to raise awareness about the disease," she said.

White-Ginder said Sen. Edward Kennedy "told me they had legislation they would like to name the Ryan White Care Act. He said for the first time we have people actually caring about people with AIDS and this was a chance for us to get something done."

Following her son's death, she was invited to share Ryan's story before Congress to promote passage of the legislation.

"For the first time, I thought maybe I had a voice in this AIDS epidemic -- a voice as a mom."

The Ryan White Care Act, approved in 1990, funds essential services, including health care, medication, mental health services and case management. Illinois receives approximately $70 million from the federal program.

Open Door Clinic Executive Director David Roesler and John Peller of the AIDS Foundation of Chicago said the Ryan White Care Act is scheduled to expire Sept. 30. AIDS services organizations across the country are seeking a 3-year extension of the act.

Peller said the program originally was designed to help people with end-of-life care.

"That certainly is not the case today. There are medications to help people live with HIV/AIDS," he said. "... The epidemic is different and the Ryan White Care program needs to change with it."

Peller said an estimated 44,000 people are living with HIV/AIDS in Illinois, and 80 percent of them live in the Chicago metropolitan area.

"A 3-year extension will help us see how health-care reform will mesh with the Ryan White Care Program," Peller said.



source : http://www.suburbanchicagonews.com