Comments by Sandra Thurman
Director, Office of National AIDS Policy
10th Annual National AIDS Update Conference
March 25, 1998
Thank you for inviting me to join you this morning.
I am honored to have been invited to this conference to share some thoughts on how we are doing in the fight against AIDS.
I want to congratulate the conference organizers for developing an extremely comprehensive agenda for the next several days. But I would expect no less out of my good friend Cliff Morrison. The National AIDS Update Conference is one of the nation's premier AIDS conferences, and I am pleased to be a part of it. In fact, this conference was one of the first I attended when I was at AID Atlanta so many years ago. I feel old!
This conference comes at an extraordinarily important juncture in our nation's battle against AIDS. Consequently, your work here at this time, your experiences and your ideas that you have come here to share, could not be more critical.
As you know, this epidemic has always been about grappling with difficult issues. So I want to begin today by directly addressing an issue on which I have very strong and very personal feeling: needle exchange.
Every day, I think about the 22 Americans that will have their lives torn apart by HIV as a result of I.V. drugs. Thirty-three lives that might not have been imperiled had local communities been given the support to implement needle exchange programs. These are not numbers but real lives. I have cradled them in my arms, often in their last moments. I am haunted by the responsibility to use my position to do everything I can to stop this carnage.
Today, America is struggling with not just one epidemic but two. Tragically, the twin epidemics of AIDS and drugs are linked and impose devastating costs on individuals, families and on our society as a whole.
Let me ask you something. Would all of you who think that every American who needs drug treatment should have access to it please raise your hands? (Pause)
Now how many of you support needle exchange programs to help reduce the spread of HIV? (Pause)
And how many of you think the Federal policy on needle exchange should be driven by medical science and not by political science? (Pause)
Thank you. Your views are shared by virtually every major public health organization and medical journal in the country.
Over the past week, there has been a lot of attention paid to the differences that some of us in the Administration are believed to have on this issue - the phrase "Czar Wars" has been used - but let me assure you that those of us who primarily focus on the plague of drugs are no less committed to saving lives than those of us who have dedicated ourselves to battling HIV. Our goals are the same, although we may differ, on occasion, on the best means to achieve them.
What the news stories have not focused on, however, are the areas of agreement which are critically important:
- We agree that drug treatment is the most effective tool in reducing the use of drugs and consequently the sharing of needles, and that we need a lot more drug treatment than is available now.
- We agree that our public health policies must be driven by science, not politics.
- And we agree that the Congress, which imposed the restriction on Federal funding for needle exchange, has given the Secretary of HHS the authority to remove that restricton. We will support her efforts to ensure that the decision is guided by the science
There is no one who has been working in AIDS for a long time who is naive enough to think that decisions on these issues are made in a vacuum. If sound science were all it took to drive policy, we would have had a tobacco settlement and health care reform long ago. However, in the end, science always prevails. I must tell you with the mounting evidence in favor of needle exchange programs, I have every confidence that the Secretary will insure that, once again, science prevails.
Givin issues like this, it will take all of our collective wisdom and expertise to move us productively through this most challenging phase of the epidemic. But no where on earth is there a group of individuals and organizations that has demonstrated a greater ability to rise to the occasion than the AIDS community. Together, we have built more with less -- than any community I have ever known.
An Indian philosopher wrote: "Faith is the bird that feels the light of day and sings while the dawn is still dark." Today, paradoxically at the dawn the new age of AIDS treatments, our faith in society's ultimate support for comprehensive prevention and treatment has been challenged as never before -- but together we will meet this challenge and move toward the light of a new day. A day without AIDS.
There has been a sense of great hope and optimism generated by the new combination therapies. And appropriately so. These new therapies do in fact help many people for some time, often in miraculous ways.
But for most, they remain far out of reach, and for some, they simply do not work. We know that the blinding ignorance born of racism, sexism, and homophobia still feeds this epidemic. And we know that the twin epidemics of HIV and drug use put a growing number at risk and make the dialogue related to needle exchange all the more important.
So, while the reality of emerging new drug therapies keeps us optimistic, it cannot make us complacent. With hope on the horizon, many Americans and too many policy makers yearn to believe that the worst is behind us. Yet the sobering truth is that the AIDS epidemic is far from over.
Perhaps our most important job in the short term is to temper hope with realism, and share the reality that despite the great efforts of a lot of dedicated people, AIDS is thriving and threatening more lives in the communities across this great nation and, indeed, around the world.
With no vaccine or cure in sight, we are actually far closer to the end of the beginning than we are to the beginning of the end. In big cities, small towns, and rural communities across this country, the epidemic rages on. And increasingly, it is women, young people, families, and communities of color that are caught in the crossfire.
We must find new and improved ways to shout from the mountain tops that "it ain't over 'til it's over!"
AIDS is not somebody else's problem--we are all living with AIDS. America is a family and our family has AIDS. Our children, our parents, our brothers and sisters, our extended families, and our communities are all at risk.
Ultimately, the misperception that we have a cure, coupled with the sheer fatigue and numbness that bracing against this epidemic has caused over the last 17 years, has led us into a false sense of security that threatens prevention efforts and fuels public and political indifference.
This morning, I would like to walk through some of the progress we have made together; offer a picture of the changing face of AIDS; lay out some of the many public policy issues currently being discussed in Washington and around the nation; and make a plea for you to continue to play a critical role in these discussions.
But before all of that, let me start by simply thanking you for all of the good work that you do. I know that many here have been in the trenches of this battle since its beginnings some 17 years ago. Others have joined along the way, and have helped bring new ideas and new energy to the struggle. I know what it's like in the trenches. I ran a community-based AIDS organization for six years, and have been involved in AIDS work for 14 years. I have lost some of the friends I loved most in this world to this disease. And it is because of them, and in their memory and honor, that I continue to do this work.
Let's face it, none of us came to work in AIDS to get rich or to get home by 5 - we came into it to live and to keep our friends, our loved ones, and our communities alive and healthy. Most of us don't take the time to acknowledge how much pain and anguish we witness and experience, so I'd like to take just a minute to thank you for your strength, your courage, and your perseverance. And, to acknowledge our losses. Together, in the words of Mother Jones, AWe must pray for the dead and fight like hell for the living!@ So onward with our work.
With your help this Administration has made significant progress in our effort to fight AIDS and to serve those who are living with the disease. Let me give you a run down of what we've done together:
- The Clinton Administration has increased discretionary funding for AIDS programs at HHS by 83% since 1993. This compares with an overall increase of just 1% in the total amount of discretionary spending over that same period.
- The Ryan White Care Act, which helps many of you provide for the care and support for people living with HIV and AIDS, has benefited from a 241% increase in funding in five years. In the President's budget request for 1999 released this past Monday, the President proposes a $165 million increase in Ryan White Funding.
- $100 million of that increase is slated for the AIDS Drug Assistance program, bringing our spending to over $385 million. This reflects our absolute commitment to insuring that everyone who needs the new AIDS treatments will get them.
- The remaining $65 million will go to other areas of Ryan White, with $25 million for grants to cities, $27 million for grants to states, $10 million for early intervention, and $3 million for children, youth and families. In total, we propose spending over $1.3 billion on Ryan White. That is certainly exceptional in this day of balanced budget mania, although we also know that the need will continue to grow.
- Despite opposition from some Members of Congress and many of the nation's governors, we have preserved the guarantee of Medicaid coverage for people living with AIDS. Medicaid is the primary health provider for over 50% of people with AIDS and 92% of children with AIDS.
- The Administration supported the creation of the Office of AIDS Research empowered with the authority to plan and carry out the AIDS research agenda and has consistently defended it against setback; and we have more than doubled funding for the Housing Opportunities for People With AIDS (or HOPWA) Program from $100 million in 1993 to $225 million in the President's latest budget.
One area where we have not done nearly as well as we need to is that of prevention. While there was a $5 million increase requested in the FY 1999 budget, and while prevention funds are up more than 28 percent since President Clinton took office to $637 Million, we know that this is not enough and you have told us that this is not enough. We must do more in this area and we are looking closely at how we should approach this. I will state unequivocally, this Administration is committed to prevention and I will do all that I can to make sure that commitment is honored.
These have been hard-won victories for people with AIDS, and I know that many of you fought hard to make them happen. We all know that there is more, much more that needs to be done. We need to use our time here together to share ideas, opportunities, and strategies; and we need to recommit ourselves to fighting the good fight at home until this epidemic is over.
I think the recently released statistics on AIDS deaths by the CDC can help give us some direction. The CDC analysis for the first six months of 1997 indicates a 44% decline in AIDS deaths when compared to the same time period in 1996. That is a truly remarkable accomplishment that we need to celebrate.
However, we also know that underneath these overall statistics are glaring signs of the substantial disparity in how this epidemic affects those who are often more marginalized in our society.
- For example, while the death rate from AIDS declined 22% for men in 1996, it went down only 7% for women.
- And while African-American and Latina women comprise less than one-fourth of all women in this country, they account for more than three-fourths of all AIDS cases among American women.
- For white men and women, the decline in AIDS deaths was 28%. For Latinos, it was only 16%. And for blacks, it was only 10%.
- If we look at primary risk factors for infection, the decline was greatest among men who have sex with men, for whom AIDS deaths dropped 26%. For injection drug users, the reduction was only 15%, and for heterosexuals (which includes the partners of injection drug users) the decline was only 4%. And we certainly know that for young gay men, particularly young gay men of color, the epidemic is getting worse, not better.
Now these numbers get a little blurry after a while, particularly this early in the morning, but buried in here are some of the most pressing policy questions of our time. They are now, or soon will be, considered within federal agencies, the Congress, and local communities and agencies as well.
And it is these policy discussions that desperately need your input and active involvement. These debates are about you and those that you serve day in and day out, and not about us. You are the experts.
Let me take a minute to outline some of the challenges that have come knocking at my door. I'm sure that they'll sound familiar to you.
- How will the Ryan White CARE Act adjust to an ever changing health care environment? How will the essential services you provide be integrated into managed care networks to ensure people living with AIDS get the support they need?
- How will communities, with more and more people with HIV living longer, be able to manage the case load?
- There is a broad and growing consensus within the government and in the AIDS community that it is time to track HIV infections along with AIDS cases in order to get a more accurate sense of where the epidemic is today and where it is going so we can plan our responses and allocate our resources accordingly. However, if we choose to begin surveillance of HIV cases, how do we assure confidentiality and protect years of carefully constructed and fought-for patient protections? Or will fear of disclosure and discrimination create yet another barrier to to people being tested and thus, ultimately to care and treatment?
- The individuals who are expressing concern about these issues are not alarmists...they are simply alert to the harsh reality that discrimination is alive and well in America.
- How does the system respond to the incredible cost of the new treatments while at the same time continuing to build pathways to care that do not yet exist for so many? With discretionary dollars harder and harder to come by, how do we prevent these two needs from being pitted against one another?
- How does the public health system respond to the most vulnerable and disenfranchised populations in this country, including the homeless, the immigrants, the mentally ill, and active and recovering drug users? When benefits and housing are increasingly unavailable to those who use drugs or even those who have succeeded in getting off drugs, how can primary care and supportive service providers meet their basic human needs?
- Are homeless people and drug users able to use the new treatments or are they to be judged inherently incapable of treatment compliance and denied access to potentially lifesaving medications? Is that a decision that should be left up to individual practitioners or should some standard be developed? Are decisions made by health care providers based on the real capabilities of their patients or on preconceived notions of the homeless or the mentally ill or drug users? Can support structures be put in place to ensure these individuals will benefit from the fruits of our research?
- How do we ensure that disenfranchised populations, especially racial and ethnic minority individuals, have care and treatment provided to them in a linguistically and culturally appropriate manner. Too often, all minorities end up being grouped together, as if Blacks, Hispanics, Asians and Indians are all alike. We forget that there are 575 Indian tribes in the United States, and that half of the American Indians/Alaska Native populations lives in urban areas. We often forget that Latinos come from more than 29 countries, and that each of those countries is culturally unique. You cannot effectively craft a "one-Spanish-language-approach-fits-all" policy. It will fail.
We often forget that there are more than 50 Asians dialects spoken in the U.S. We tend to lump all African Americans together. We often tend to just forget about Caribbeans all together.
Each of these populations, just as the majority population in the U.S., has wonderful aspects of culture and history. We must look closely at that culture and history to ensure that we are doing all that we can to prevent HIV infection in these communities and to provide the services that they deserve in a way that is accessible to them.
What are we doing to develop the infrastructure of organizations targeting minority populations so that they can reach out to their communities to do the work that is necessary. I was particularly disturbed by a new study by the Kaiser Family Foundation which indicates that African Americans are more likely to think that AIDS is the nation's leading health problem, but also think that African American leaders are ignoring the problem. If that study is correct, a terrible responsibility rests on leadership to make AIDS a top priority issue in the context of the African American community as well as the larger American community.
These are clearly not just academic discussions. How our nations responds, how each state, city, and community across America responds, how you and I respond -- will mean life or death for hundreds of thousands of Americans of all backgrounds and colors. AIDS remains an equal opportunity epidemic.
I expect that you've recognized some of these as your own issues, ones with which you and your organizations have struggled. Over the next few days, you'll have a chance to talk about them, and hopefully to develop some creative solutions. I urge you to communicate your ideas both to our office, the other government agencies that are responding to the AIDS epidemic, and to the associations and groups that represent a louder, collective voice for those living with HIV and AIDS--so many of which are partners in this conference.
Finally, I would like to mention one of the promising endeavors of the federal government, and that is our effort to find a vaccine or vaccines for HIV. You all know that no epidemic has ever been stopped without a vaccine.
In May of last year, the President made a bold commitment to finding a vaccine within ten years. The National Institutes of Health is busy pulling together the researchers and creating the new facility to lead this important work. The UNAIDS program recently reported that there were an estimated 5.8 million new infections last year. That is nearly double the number originally predicted and over one million of those newly infected were children.
When we examine numbers like that we need to see the handwriting on the proverbial wall. There is no hope of triumphing over this epidemic without an easily administered, safe, effective, and inexpensive vaccine, and there is an enormous amount of work to be done in order to achieve that goal.
My Grandmother used to tell me "an ounce of prevention is worth a pound of cure" and it is true. But, we must have both: prevention and cure.
In the interim, we must continue our triple-track approach of care, research, prevention. And housing. Let's not forget housing!
Let me close with a quotation from Vito Russo, an activist in the AIDS and gay communities:
AIDS is a test of who we are as a people. When future generations ask what we did in the war, we have to be able to tell them that we were out here fighting. And we have to leave a legacy to the generations of people that come after us. Remember that someday the AIDS crisis will be over. And when that day has come and gone there will be people alive on this earth--gay and straight people, Black people and white people, men and women--who will hear the story that once there was a terrible disease, and that a group of people stood up and fought and in some cases died so that others might live and be free.@
You are those people. We recognize the incredible strength and commitment that you demonstrate day in and day out, working in the trenches to end the AIDS epidemic. Thank you again, and God's speed to us all in our quest to stop AIDS.
There are prepared remarks; actual remarks may be different.