WASHINGTON (Gray DC) -- Senator Ron Johnson (R-WI) says he wants to give terminally-ill patients the option to try promising, but not fully approved treatment options.
Johnson said, “I think it’s time for the House to just pass the Senate bill, and let’s give patients that freedom, that hope, that right to try.”
The bill, which already passed the Senate, is sitting in the House Energy and Commerce Committee, and hasn't been scheduled for a hearing.
During President Donald Trump's State of the Union address, he said, “It’s time for Congress to give these wonderful, incredible Americans the right to try.”
Johnson said since that, there's been little movement behind the scenes on the House side.
A spokesperson for the House Energy and Commerce Committee said, "Chairman [Greg] Walden (R-OR) is encouraged by the momentum building to help patients experience the full benefit of access to investigational drugs and therapies. The increased attention on this complex discussion has led to bipartisan commitment to balancing individual rights with patient safety. Throughout this process, Chairman Walden has valued how the champions of this issue not only want to help vulnerable patients, but also make sure folks have proper safeguards in place to protect them from unintended harm. While we don’t have a scheduling announcement at this time, Chairman Walden looks forward to continuing to work with the administration to get these reforms over the finish line for patients."
Earlier this month, 38 patient advocacy groups sent a joint letter to House leadership in opposition to Johnson's bill. They say the bill would cut out the Food and Drug Administration, which does more to protect vulnerable patients rather than serve as a roadblock.
Paul Melmeyer is with the National Organization of Rare Disorders, and said, “[Johnson's bill] could actually harm our patients by allowing individuals to perhaps take advantage of them in a very serious situation.”