[Congressional Record Volume 143, Number 59 (Thursday, May 8, 1997)]
[Extensions of Remarks]
[Pages E879-E880]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]


``IF NOT NOW . . .''--MARY FISHER'S POWERFUL CALL TO ACTION IN SUPPORT 
                  OF THE AIDS DRUG ASSISTANCE PROGRAM

                                 ______
                                 

                            HON. FRED UPTON

                              of michigan

                    in the house of representatives

                         Thursday, May 8, 1997

  Mr. UPTON. Mr. Speaker, I recently had the honor of meeting 
personally with Mary Fisher, founder of the Family Aids Network, and of 
hearing her address a congressional briefing on the AIDS Drug 
Assistance Program [ADAP]. Her speech, ``If Not Now . . .'' is one of 
the most powerful and compelling statements I have heard on the need 
for a strong national commitment to assist persons with HIV and AIDS. 
Due to remarkable progress in the development of AIDS drug therapies, 
we now have combination drugs that can dramatically lower virus levels, 
that appear to be transforming AIDS from a fatal illness to a 
manageable chronic condition, and that may actually eliminate the virus 
entirely or almost entirely from the body.
  But, Mary asks, do we have the national will to make these drugs 
available to all who need them? That is the question posed by the 
availability of these new therapies.
  I am entering Mary's speech in today's Congressional Record because I 
believe it should be required reading for every Member of Congress--and 
every American.

                          ``If Not Now . . .''

                            (By Mary Fisher)

       Thank you very much, Bill. I appreciate your kind words.
       In order to be very brief today, I intend also to be very 
     direct. I do not mean to be brusque, but I do want to be 
     blunt. The good news is that I won't elongate your program 
     with a massive keynote address. The bad news is that I have 
     no time for good jokes.
       Let me begin with a happy idea. We should be ashamed of 
     ourselves. Like evangelists caught in cheap motels with bad 
     magazines, we are where we ought not to be: Nearly two 
     decades into an epidemic that has killed hundreds of 
     thousands of Americans, we have gathered to discuss how many 
     more should die. I regret that we have come to this point 
     and, as an American, I am ashamed of it. And I want you to be 
     ashamed of it too. We should never have gotten ourselves to 
     the place we find ourselves. And we should get out of this as 
     soon as possible.
       Pharmaceuticals represented here this noon have, by virtue 
     of hard work and well-principled research, produced drugs 
     that may prolong my life and the lives of others with AIDS. 
     They should take great pride in what they have achieved. I am 
     in their debt.
       Members of Congress and their staff here this noon have, 
     through consensus-building and budget-brawling, protected 
     funds needed for AIDS research, AIDS-caregiving, and AIDS-
     intervention. I am also in your debt.
       And colleagues from the AIDS community are here who've 
     fought this epidemic with unimagined creativity and 
     unheralded courage, not out of a desire for national 
     recognition but out of a commitment to keep alive those who 
     are dying. I take enormous pride in being one of you, and in 
     the moral legacy written by pilgrims on the road to AIDS and 
     those who have cared for them.
       In this afternoon's program, expert colleagues are going to 
     explain hard facts, large figures and complicated realities. 
     I am here not to give their speeches, but simply to set a 
     context. And the context I want to set is, in a word, shame.
       For twenty years, this nation has treated persons with AIDS 
     as uniquely responsible for their own condition. Despite what 
     we know about smoking and cancer, we have not done to smokers 
     what we have done to persons with AIDS; despite what we know 
     about diet, we have not done to heart-attack sufferers what 
     we have done to persons with AIDS; despite what we know about 
     bucking horses and skydiving, we have not done to Christopher 
     Reeves what we have done to persons with AIDS. Senators 
     debating HIV-infected immigrants have used, as their point of 
     useful reference, ``infested fruits''--a double entendre' on 
     both ``infection'' and the word ``Fruit.''
       And because we have labored against such stigma and 
     dsicrimination, such ignorance and evil, we have not reached 
     common agreement on the most basic of all understasndings: 
     That Americans with AIDS do not deserve their disease but do 
     deserve our assistance.
       Failure to achieve consensus across moral and political 
     lines on that fundamental reality has done more to contribute 
     to the destruction of the AIDS community than the virus 
     itself. So deep has the stigma been, so controversial the 
     epidemic, that more than a hundred thousand Americans had 
     died of the disease before an American president dared say 
     the word ``AIDS'' in public. Tens of thousands of obituaries 
     have lied about the cause of death, out of families' fear of 
     shame. And those of us who are left are often mute. How do I 
     explain to my sons Max and Zachary their father's death and 
     my disease, on the one hand, and the nation's response on the 
     other, with anything less than shame?
       Archbishop Desmond Tutu once said that the South African 
     Truth Commission was created to ``release our shame, to move 
     us from anger to healing, from futility to hope.'' It is 
     Tutu's sense of shame--an active shame, a useful shame; shame 
     that says ``for

[[Page E880]]

     crying outloud, it's enough already''--which should motivate 
     us to do what we've not done before.
       The epidemic is nearly two decades long. Hundreds of 
     thousands of Americans have died. Hundreds of thousands more 
     are in danger of dying. What stands between these Americans 
     and death is drugs; what stands between these Americans and 
     drugs is money; and what stands between these Americans and 
     money is...us, the American people, the United States 
     government, and the AIDS Drug Assistance Program.
       I've spoken in many settings, but I've never before stood 
     in public to argue for any single piece of legislation. I've 
     worked quietly, confidentially, off-the-record with countless 
     legislators and leaders, including some of you here today. 
     But the time has come for many of us to do what we've not 
     done before, including me. I need to say publicly that we, as 
     a nation, should be ashamed at how we have treated those with 
     AIDS. And I need to call all of us, you and me, to assure 
     that life-prolonging and death-deferring drugs are 
     available for every HIV-infected person in this nation, 
     not when we stand at death's door, but while we stand in 
     the public square. Politics and science make it possible, 
     economics and morality make it imperative. If we do not 
     embrace the opportunity now, we have consciously and 
     unconscionably prolonged the legacy of shame.
       We have a new person filling the position popularly known 
     as ``AIDS czar.'' Sandy Thurman is a good and decent person, 
     committed and compassionate. She has no history in this 
     position and, therefore, no enemies' list. Democrats and 
     Republicans alike have every reason to work with Sandy. And 
     if she requires the assistance of people from both sides of 
     the aisle--whether we are homemakers or newsmakers--if we 
     understand the shame that our national response to date has 
     earned us, we will work with her.
       The Vice President has argued, recently, for expanding 
     Medicaid coverage to provide interventions earlier in the 
     case of persons who are infected. This proposal makes 
     enormous sense scientifically, morally, and economically--it 
     will absolutely decrease, not increase, Medicaid spending. To 
     my knowledge, no Republicans have responded with assaults. 
     Therefore, the idea is still alive that common sense and 
     common decency would have a place in common policies.
       We need not have another bureau or department to consume 
     funds, nor does ADAP propose one. We need not have another 
     study to justify funds, nor does ADAP require one. What we 
     need is consensus that those who are infected deserve an 
     opportunity to live. It is a proposition so simple, and so 
     morally compelling, that both AIDS Action and the Catholic 
     Archbishops can agree on it. It is, at its simplest root, 
     merely a pro-life argument.
       Others here today will present the scientific data and the 
     economic numbers. I do not doubt how convincing the case will 
     be. What I wonder about, even worry about, is this: that 
     after two decades of death and dying, we will not yet have 
     the will to move toward hope, even when hope is staring us in 
     the face.
       I spoke last week in Arthur Ashe's hometown. I admitted 
     that the AIDS community is no longer certain what to hope 
     for. My own care for my late husband Brian, in the days 
     before he died, is not uncommon--many of us with AIDS are 
     cared for by others with AIDS. But now we face an altogether 
     new situation, unimaginable the Sunday morning Brian died.
       One of us will respond well to the new [drug] cocktail, and 
     one of us will not. How then will we live together as one 
     rises up from the grave and another sinks into it? Does 
     ``survivor guilt'' leave room for love?
       ``One of us will be able to afford protease inhibitors,'' I 
     said in Richmond, ``and one of us will not. How, then, will 
     we live together in community? How will I love you, if I know 
     you are staying with your children while, for lack of money, 
     I am losing mine?'' The fragile bonds that hold together the 
     weakening, fragile AIDS commnity, cannot withstand such 
     division. Which is why I have come to argue for a legislative 
     action.
       Make no mistake about it: the reason AIDS-related death 
     rates have gone down for American men and gone up for 
     American women \1\ is access to drugs--early access, complete 
     access, sustained access. In the AIDS community, the great 
     difference between men without children, and women with 
     children, is this: One group is living longer, and one is 
     not.
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     \1\The CDC recently released a morbidity report on American 
     AIDS-related deathrates, 1996, showing that such deathrates 
     had decreased 21% for Caucasians, decreased 10% for 
     Hispanics, and decreased 2% for African Americans; decreased 
     15% for males and increased 3% for heterosexual 
     transmissions.
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       The power to change these deathrates is in this room. If 
     those of you who are Republican leaders will say to those who 
     are Democrats, ``We should be ashamed of these deaths,'' 
     these statistics can be changed. We have no cure, but we have 
     within our power the ability to end the immoral discrepancy 
     between those who live and those who die for lack of access 
     to drugs.
       If the AIDS organizations will work with the religious 
     community; if the pharmacies will work with the legislators; 
     if those on the Hill will work with those in the White House; 
     if staff members from both sides of the aisle will make 
     vulnerable lives more important than political ambitions--it 
     can be done. We can have the experience with AIDS that South 
     Africa has had with apartheid: we can put behind us the 
     darkest days.
       When I imagine that goal being attainable, and I look at an 
     audience of such concentrated power, I cannot refrain from 
     asking, ``If not you, who? And if not now, my God, when?''
       You must go explain your actions to your colleagues and 
     your constituents. I must go explain mine to two children 
     not-yet-ten years old. But both you and I must first explain 
     them to ourselves and to Our Maker. In that private chamber 
     of our own souls, surely we can agree that there's been dying 
     enough, and discrimination enough, and injustice enough.
       What's offered us here, today, of science economics, of 
     policies and protocols, may not give us a cure. But it can 
     take us away from shame toward hope. If you would act on 
     that, then I and my fellow-pilgrims on the road to AIDS will 
     offer you more than our thanks, and more than our votes. We 
     will offer on your behalf this ancient prayer, ``Grace to 
     you, and peace.''

     

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