We recently caught up with Ryan White’s mom and the Grove’s National Leadership Award honoree, Jeanne White Ginder, to ask her about her involvement with the Ryan White CARE Act over the past 20 years. You can’t help but be struck by her candor, her humility, her dedication and her bravery.
My involvement in the Ryan White CARE Act began with a phone call from Senator Kennedy in March of 1990. Ryan had been admitted to the hospital and was having a tough time and the press calls and other calls were overwhelming. A call came through to the hospital switchboard and Ryan’s doctor (Dr. Martin Kleinman) took a call and told Elton John, who was helping screen calls for us, that it was Senator Kennedy and he wanted to speak to me. Elton John told me it was a call I should take… There was a bill, Senator Kennedy said, called the CARE Act and wanted to know if he had our permission to rename it in honor of Ryan and he wanted to know if he had our permission to do that. I told him yes, but gave it no more thought. I was focused on Ryan’s health.
After Ryan died, I got another call from Senator Kennedy asking me to please come to Washington DC to testify to Congress and I said no. I was afraid that I would do more harm than good to the cause. I didn’t know how the legislation process worked; I was afraid my being there might hurt the cause. Later I got a call from Senator Hatch (Kennedy’s co-sponsor of the original bill) asking me again to please come and tell the Senators about Ryan, as his mom, from my heart. My friends from amfAR also called to encourage me to come to DC and testify and that they would be there to help me. And so I did.
My first reaction was that the talking was what Ryan did. I went with him when he spoke, I supported him but I wasn’t the person speaking. But when I finally went to DC and spoke, I felt like I had something to offer – I had my story to tell and that was what I was supposed to do. Often when I am traveling the country speaking, I get a lot of people coming up to me and thanking me for the Ryan White CARE Act and what I want to say to them is that I was just a face, one of the faces, but that there were many others who really made the CARE Act happen, and sadly a lot of them are no longer with us. They are the ones that should be thanked.
Of course none of us could have ever anticipated what the CARE Act would look like now or be like now. How could we? What I do know is that it makes me very sad that we still face the same number of new HIV infections that we have been facing for many many years. The system can’t withstand this kind of pressure forever. What we need to do is really educate our kids – and not when they are in college but when they are younger and when they need to be given the skills to be safe. I am really troubled that we don’t provide comprehensive HIV and STD and alcohol and drug and reproductive health education to our youth.
And you know, it is true, we have come a long way since then, but stigma and discrimination still exist and still affect people with AIDS. We still have a lot of work to do.