On the recordDecember 20, 2022
Mr. President, I, too, want to thank Senator Feinstein for her years of effort to get to this point. I am proud to stand today and now celebrate the passage of H.R. 785, which will provide relief to the Bueso family. As you heard, the Buesos came to California 20 years ago from Guatemala because their daughter Isabel had been diagnosed with a rare, dangerous genetic disorder that can cause enlarged organs and skeletal abnormalities. Let me be clear. She was invited--that is right--invited to the United States to participate in a clinical trial at that time by doctors in the San Francisco Bay area to help find a treatment for this condition. Thanks to her participation in this clinical trial, doctors eventually identified and created an effective lifesaving treatment for this disease, not just to help save her life, but others. So, yes, her participation, the treatment that was developed, will save lives of Americans. To this day, Isabel Bueso depends on this drug, which is administered to her at a hospital in Oakland, CA. But more than that, without this treatment, which is not even available in Guatemala, doctors have said that she cannot survive without it. Here at home in America, Isabel is an inspiration to countless others.…





