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Following are the remarks of Joan Samuelson on the steps of the Senate building today. This was referenced in the PRESS RELEASE. REMARKS OF JOAN I. SAMUELSON DIRECETOR, PARKINSON ACTION NETWORK RE: MEDICAL RESEARCH TRUST FUND FEBRUARY 28, 1994 " I appear before you today to speak for Americans who, like me, live with a ticking clock. Many of you here today live with one, too. Like me, you know that, if medical research is prevented from dellivering breakthrough cures to us, your hopes for happy, productive lives will vanish -- perhaps very soon. In my case, having been affected with Parkinson's disease for seven years, every minute of every day is affected by my illness. When I wake up each day I think, how will I do today? If I have events requiring me to walk more than a half block, will I be able to make it? Will my hands shake so much that I have periods when I cannot write, or hold a phone? And I am one of the lucky ones. Unlike many people I know, some afflicted no more years than I, I am still able to feed myself. I still can work wee enough to hold down a job, so I am not yet on disability, on SSI, on welfare. But I also know that without a breakthrouh in treatment, the cell deterioation of Parkinson's will continue. Without that breakthrough, my future is to join those who are prisoners of their bodies, unable to move, unable to speak. The most heartbreaking part of this story is that this is unnecessary suffering. Scientists talk of miraculous breakthroughs that are just beyond arm's reach, using tissue transplants, neural growth factor, genetic engineering. They go so far as to promise me that, if the research can be funded, they can deliver a breakthrough in time to save me. But they also say the research is barely inching forward, because they have no money. To me, that is a death sentence. We have been in this situation before. Four years ago, medical science told us of incredible promise from tissue transplantation, but the Bush Administration was adhering to a ban on federal support. We gathered together, sick Americans, scientists and our loved ones, and worked to change that policy. People in high places told us we would never win, but we did -- with overwhelming Congressional support and the act of President Clinton two days after his inaugration. It would not have happened had our community of sick, suffering Americans not said, "This is not acceptable. This must change." But, as Senators Harkin an Hatfield know as well, permitting research to proceed is not enough: there must be money to fund it. In the case of tissue transplation, despite enormous breakthrough potential, a huge backlog of research sits with only tiny support available, because there simply is not enough research money to go around. We have a great opportunity now to change this, because of the giant spotlight on health care. I ASK TO TO JOIN ME IN SAVING OUR LIVES BY TURNING THE SPOTLIGHT ON THE NEED TO FINANCE MEDICAL RESEARCH. The health care plans on the table, including the President's plan, do no more tha maintain our bodies as we deteriorate and die. WE MUST SAY NO. We must insist that the true health care address the need to end this deterioation,stop this suffering, with treatment breakthroughs and cures. We must tell them to listen to the scientists, who will tell of the medical wonders they can perform. And tell them to listen to the economists, who point out the fiscal idiocy of withholding research funding while paying billions in care for those who could be cured. But the fetal tissue campaign taught us a critical lesson: to get the attention of the American people, they must hear from us know how those dreams and numbers translate into human lives. If we speak up, the American people--the Congrss, and the Administration--will care, because they are us. Every one of the has a spouse with cancer, or a parent with Alzheimer's, or a neighbor with Parkinson's, or a ticking clock of their own, inches away from a diagnosis of diabetes or a stroke. We must show them, and our elected representatives, that our lives hinge on this decision: millions of us could be cured or saved from unnecessary years of pain, crippling, imprisonment in our homes or nursing facillities, or early death. Talk to reporters, and talk show hosts, and people at the supermarket, and your elected representatives. Tell them you don't want a health care reform system that will pay billions for our deterioation and dying, but won't pay to cure us. Tell them the Harkin-Hatfield plan is the only health reform vechile that tackles this problem. And most important, tell them we have to act now. I can't wait. Millions of Americans can't either. Join me. Let's get busy and get this done." Regards, Alan Bonander ([log in to unmask])