Comments by Sandra Thurman
Director, Office of National AIDS Policy

Annie E. Casey Foundation
December 11, 1997

Thank you Raymond Torres and Douglas Nelson for asking me to be a part of this conference and for giving me the opportunity to speak with all of you this afternoon. In addition, I would like to extend greetings from The President and The First Lady, who wish you much success in this important endeavor.

We are all very familiar with the great work of the Annie Casey Foundation and appreciate your longstanding commitment to low-income children and families. Today, in particular, I would like to salute you for your willingness to focus much needed attention on children and families living with HIV and AIDS.

Your conference comes at a critical juncture in our nation=s battle against this deadly virus. With hope on the horizon, many Americans, and too many policy makers yearn to believe that the worst is behind us. The sobering truth is that the AIDS epidemic is far from over.

American is a family and our family has AIDS -- our children, our parents, our brothers and sisters, our extended families, and our communities all have AIDS. And in a host of different ways and from a variety of different vantage points -- our children are caught in the crossfire of this epidemic and cry out for our help.

We have made and continue to make great strides -- but we cannot allow good news to breed complacency. Present and future generations are in jeopardy -- and there is more, much more that needs to be done.

Your conference theme -- Planning Children's Futures -- beckons us toward a range of vitally important policy discussions.

• AZT during pregnancy and childbirth can stop the spread of HIV from mother to child but needs to be universally available to all those who need it.
  
  
• Effective prevention efforts can help to keep our children safe -- but they require us to confront difficult topics of sex and drugs.
  
  
• New treatments can bring the promise of longer and better lives to individuals and families living with HIV and AIDS -- but these drugs are expensive and far beyond the reach of many who need them.
  
  
• Children and family members infected and affected by HIV can benefit greatly from health, mental health, and support services but are too often not connected to these essential systems of care.
  
  
• And finally, children orphaned by AIDS can survive the devastation if they can find their way to love, nurturance, hope, and stability but this requires planning, options, and a great deal of support which now comes too little and too late.

But with your help, and through effective public-private partnerships, our nation=s village can raise its children -- even in a world with AIDS.

Recently, the Centers for Disease Control reported major reductions in HIV transmission from mother to child. In just four years, we have seen a nearly 50% decline in the number of children diagnosed with AIDS resulting from perinatal transmission. Since the CDC implemented guidelines in 1995 recommending voluntary prenatal HIV counseling, testing, and treatment when needed -- pregnant women and their providers have worked together to reduce HIV transmission to children. This is great news and it should continue to get better and better.

Furthermore, our nation's pediatric AIDS scientists are to be commended for their diligence -- and we are working closely with them to remove the obstacles children face in accessing new treatments. Currently, of 14 approved anti-retroviral AIDS drugs, only 5 are approved for children. This has put enormous pressure on doctors to prescribe drugs, often without child specific dosage and safety information, to try to enhance their quality of life. It is for this reason that the President and First Lady strongly supported the new Food & Drug Administration rule requiring that, for the first time, drug companies test new therapies for children. And this is not just true for AIDS drugs, but for all new drugs where such testing is feasible.

Recently, the drug companies expressed concern that the proposed testing of new drugs for children may be too expensive to be possible. Well let me be clear, this Administration is committed to implementing the new FDA rule and to improving safe and affordable access to new drugs for children -- and for all people living with HIV and AIDS.

Yes we are making progress. And while some said it couldn=t be done -- researchers, doctors, nurses, social workers, activists, governments, foundations, and families living with AIDS, advocated, organized, and delivered to save our children's lives. This is a true testament to the potential of our collective will. And this is what gives us the strength to face the many challenges that lie ahead.

My friends, right here at home, half of all new HIV infections are among young people under the age of 25. 1 in 4 is a teenager. And every hour of every day -- two additional young people become infected with HIV. To stem this rising tide of HIV infection we need to reinvigorate our prevention efforts -- and this time, we all must join in this fight.

I commend you at the Annie Casey Foundation for launching your APlain Talk@ program aimed at helping adults, parents, and community leaders to communicate more effectively with young people, especially those who are sexually active. Too many young people have lost faith in themselves and in their futures -- and need our support and encouragement if they are to make the transition to healthy and productive adulthood and parenthood.

Women too are increasingly at risk of HIV. In fact, the rate of HIV infection is growing most rapidly among women -- with a disproportionate impact on poor women and women of color -- most of whom have children or are of childbearing age. Often these women, and their children, are caught in cycles of despair, poverty, violence, and drugs. All too frequently they feel they lack the control over their own lives needed to make safe choices and safe passage. Helping these families requires outreach, trust building, cultural sensitivity, and a comprehensive array of services and supports.

Unfortunately, the hopeful new AIDS therapies are a distant dream for far too many of these families.

• Do they know they are infected? Should they find out?
  
  
• Should they try these new drugs? Should their children?
  
  
• Are they eligible for Medicaid? How do they get it? Does their state Medicaid program cover these drugs? What about the support services?
  
  
• Is there a clinic in walking distance from their home or shelter? Can they afford the bus? and
  
  
• Who will watch their children while they go or when they get there?

These are just a few of the questions that arise for disenfranchised families struggling to get by. And these real life realities exist before we even get to the medical reality that unless families can create the space in their lives to take 30 pills a day at precisely the right times each and every day -- these drugs can do more harm than good. This is not a simple Acocktail@ as many have referred to it. It is a complex challenge of highest order.

But we know what we need to do. With funds from the Ryan White CARE Act, we have been able to develop truly comprehensive and family-centered care networks -- programs that understand the when a family has AIDS -- every member of that family needs help, especially the children.

We know that effective therapies are a good start, but drugs alone are not enough. Our experience with immunizations should have taught us that. If are to reach those families most in need, comprehensive systems of care and support services are essential.

And finally, I know that you will spend time today working on issues of permanency planning, standby guardianship, and other critically important child welfare matters. All too often these issues get lost in the many complex challenges we face in the fight against AIDS. I commend you for your focus on planning for our children's futures.

As a nation, we have only just begun to deal with the fact that 80,000 American children will lose their mothers to AIDS by the turn of the century. And worldwide, 40 million children will be orphaned by AIDS by the year 2010. These are the children caught in the crossfire. In many ways, these are the children of war -- and the enemy is AIDS. The only difference is that frequently the community rallies around children of war. Unfortunately, all too often our children surviving AIDS are shrouded in stigma and plagued by prejudice, fear, and uncertainty.

We must do better and with your help -- I know we can. We need to fight AIDS, not people with AIDS. After more than a decade of this epidemic, people should no longer have to suffer in silence or hide their realities from their natural support systems. Extended family and kinship networks have traditionally played a critically important support role -- particularly in communities of color -- and these networks are an essential part of planning for children's futures in a world of AIDS. The church and the community too must come to be involved in this effort.

We need a legal system that puts children and families first. A foster care system that provides children with a temporary safe place to live in route to a permanent home. And a society that find ways to support families in understanding their rights, realities, and responsibilities, and supports them whenever possible in planning their children's futures. But you know far more about this than I do -- and I hope you will keep my office advised about how together -- we can do better.

In closing, I would like to say that from Annie Casey's KIDS Count, I learned the power of facts in raising public awareness and increasing public accountability. Numbers help to us to quantify the magnitude of what we are dealing with. And in the battle against AIDS -- the numbers are staggering.

But if there is one thing that I hope you will remember -- it is that behind these numbers are real lives and shattered dreams.

Several weeks ago, I had two experiences I will never forget. The first was in Nairobi where I held little baby Joseph whose life had been saved by a nun. You see, Joseph=s mother, desperate and dying of AIDS, fearing no one would care for him after she was gone, tried to bury him herself to put him out of his misery. Thankfully, she could not go through with it.

A few days later here in Washington I had the good fortune to learn from an amazing young woman who found out she was HIV+ when she became pregnant at age 17. Luckily, her beautiful son is HIV-negative. This woman, full of ideas and hope -- still fears that if anyone finds out she is living with HIV, her son will pay the price. So many before him have. But she is determined to make a difference, for herself, her son, and all children.

This brave young woman's spirit gives me hope. Baby Joseph and the countless children, who have survived hard times and lived on, give me hope. These are the faces of families with AIDS. And their resilience leads us on. God bless you for your work.
Thank you very much.