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The Ryan White CARE Act: AIDS is Still an Emergency

Fall 2004

The Ryan White CARE Act: AIDS is Still an Emergency

Over a decade and a half ago, America and the world were introduced to a courageous young boy with AIDS named Ryan White. He was from Kokomo, Indiana and had been infected with HIV as a result of the blood product transfusions required to treat his hemophilia. The public discrimination that he faced transformed his life and the lives of others living with HIV and AIDS forever. Ryan made it possible for many Americans to understand the struggle to battle HIV and its accompanying stigma. He was truly a champion for that time in our history.

In testimony before the President's Commission on AIDS in 1988, Ryan (pictured at right) stated, "Because of the lack of education on AIDS, discrimination, fear, panic, and lies surrounded me. I was labeled a troublemaker, my mom an unfit mother, and I was not welcome anywhere. People would get up and leave so they would not have to sit anywhere near me. Even at church, people would not shake my hand. This brought on the news media, TV crews, interviews, and numerous public appearances. I became known as the AIDS boy. I received thousands of letters of support from all around the world, all because I wanted to go to school." He passed away two years later.

In 1990, the bipartisan Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was finally signed into law after years of silence and inaction at the federal level on what was originally called Gay Related Infectious Disease (GRID) by the Centers for Disease Control and then renamed Acquired Immune Deficiency Syndrome, or AIDS, in 1982.


What the CARE Act Does

At this point in history, it is clear that the Ryan White CARE Act remains the nation's most important response to the AIDS epidemic. The CARE Act funds treatment for individuals living with HIV who lack health insurance and financial resources for their care. CARE Act programs serve 533,000 individuals in the United States and its territories each year, over half of whom live below the federal poverty level. Outpatient medical care and support services are the primary focus of the legislation, but training, technical assistance, and demonstration projects are also funded (for more detailed information on the Ryan White CARE Act go to The funding allocated for the CARE Act in fiscal year 2004 was slightly over $2 billion. Unfortunately, during the last four years, Congress hasn't increased funding, or flat-funded, the program, except for meager and insufficient increases to the AIDS Drug Assistance Program (ADAP). As funding has continued to erode, local and State budgets have become strained with increasing caseloads and high demand for HIV medication, care, and supportive services. Meanwhile, the patience of AIDS advocates with the government's response to the AIDS epidemic has worn thin.

Advocacy and Media Response

On August 30, 2004 thousands of activists chanted, "Fight AIDS!" during the Still We Rise march from Union Square to Madison Square Garden in New York City, site of the Republican National Convention -- demanding that President Bush and the Republican Party focus on the problems of HIV, poverty, health care, and education in the United States. Another demonstration in front of Madison Square Garden grabbed front page headlines, with full color pictures of starkly naked members of ACT UP, messages stenciled to their bodies calling for the cancellation of debt from developing countries so that they might invest adequate resources to fight the global AIDS epidemic. In Bedford Stuyvesant, Brooklyn, angry community members living with HIV/AIDS protested against Senator Rick Santorum's (R-PA) abstinence-only policies during his visit to a community health center to discuss AIDS issues. On the final day of the Republican National Convention, hundreds of protesters took over Grand Central Terminal during a rush hour civil disobedience to oppose this Administration's apathy toward the domestic AIDS crisis. Nineteen protesters who surrounded the Grand Central Terminal information booth and a few who hung large banners from above the terminal stairwell declaring "America has AIDS" were arrested.

Despite local and national media attention from these and countless other demonstrations, the media rarely discussed the message and, instead, focused on the arrests. Political activism and civil disobedience as well old-fashioned advocacy and lobbying have all attempted to keep domestic AIDS issues in the collective public mind as a high priority among many other competing priorities like the war on terrorism and homeland security. So, what will it take to get through to this President, other legislators, and many of our fellow Americans that AIDS is still a crisis in this country? How do we invoke the spirit of Ryan White which had previously led to America's focus on our own AIDS epidemic in the late 1980s and early 1990s?

The Domestic AIDS Crisis

We often hear from our colleagues in Congress and the Administration that they don't hear from the AIDS community like they used to. The only AIDS-related messages that get through, if any, relate to the global AIDS epidemic in Africa and the Caribbean. Somehow, the domestic advocacy that created the Ryan White CARE Act has diminished, and the voices of people impacted by HIV in the U.S. aren't being heard. The media no longer covers national AIDS issues with the same vigor. It's almost as if AIDS has become the silent epidemic it once was, at the expense of our most vulnerable communities.

These include the HIV-positive African-American woman with AIDS who pays her bills and works to support her kids in Biloxi, Mississippi; a recently infected homeless youth scoping out the scene and hanging out with friends in New York City's West Village; and the newly arrived immigrant in Portland who works the night shift and became infected through sex with an HIV-positive man -- even though he doesn't consider himself to be gay. This slice of AIDS in America is only an illustration of the over 40,000 new HIV infections that we see in the U.S. each year, and the Ryan White CARE Act touches most of their lives at some point in their care.

Protecting AIDS Services in the U.S.

The CARE Act is the safety net by which we can assure that HIV-positive people have access to adequate medical care and the critical supportive services that get them into care and keep them there. As the board Chair of the CAEAR (Communities Advocating Emergency AIDS Relief) Coalition, Patricia Bass, is known to frequently relate to congressional staffers, "HIV medications don't come out of a vending machine." The CARE Act has provided, in most instances, the only service system which enables people living with HIV to access medical care because their case management, housing, nutrition, substance use, and mental health needs are being addressed. The entire CARE Act -- Title I, Title II, Title III, Title IV, Part F: SPNS (Special Projects of National Significance), Dental Reimbursement, and AIDS Education and Training Centers (AETC) -- works in tandem with other HIV/AIDS funding streams to create a sustainable system of care that will collapse if under-funded.

Since the passage of the Ryan White CARE Act in 1990, countless AIDS activists have passed away, yet the soul of their advocacy is not dead. For example, Keith Cylar, Co-Founder and Co-President of Housing Works in New York City, died in April of this year but lived every day of his life reminding us that we must respond to the needs of people living with AIDS and HIV, just as Ryan White did. "Making sure that we were going to stop this government, changing the way this epidemic was killing us. Life could not just go on as usual as long as we were suffering, as long as our friends, our lovers, and our sisters, our brothers were dying," said Mr. Cylar in 2003. Keith and so many of our community heroes played a leading role in the development of federal legislation to create and fund HIV/AIDS service programs, including the Ryan White CARE Act. Their legacy of action reminds us that the struggle to enhance the nation's response to AIDS is embodied in the importance of the Ryan White CARE Act as a linchpin of the public health infrastructure for people living with HIV/AIDS.

2005 Reauthorization

Since the Ryan White CARE Act was enacted in 1990, it has been reauthorized and signed into law twice by Congress, in 1996 and in 2000 -- always passing by unanimous votes in the House of Representatives and the Senate. Authorization of legislation expands and creates programs such as the CARE Act. The CARE Act is due to expire on September 30, 2005. It is timely that this article appears in ACRIA Update now, with a one year deadline looming for the hopefully bipartisan reauthorization of the CARE Act for an additional five years. Our President may have the unique opportunity to demonstrate clear leadership on domestic AIDS by signing the reauthorized CARE Act into law in 2005.

In a prelude to his thinking on the Ryan White CARE Act, President Bush surprised many members of the AIDS community with his comments regarding the global and domestic AIDS crises at a church in Philadelphia on June 23, 2004. It's widely known that the President embraces faith-based initiatives and abstinence-only policies, yet it may be less widely understood that he has not proposed increased funding for successful and effective domestic programs like the Ryan White CARE Act. In his speech that day, the President identified areas of focus for the Ryan White CARE Act that grassroots advocates, providers, people living with HIV/AIDS, and government officials need to be aware of as we prepare to formulate potential changes to the CARE Act to make it more responsive to the emerging needs of the AIDS epidemic in 2005 and beyond. President Bush stated, "When the Ryan White CARE Act is reauthorized next year, I propose to make it stronger and more effective by focusing resources on life-extending care, such as antiretroviral drugs and doctor visits and lab tests. This kind of care was just a dream 20 years ago. It is a reality today. And we will work with Congress to make sure that as many patients as possible are receiving the modern care they deserve. We need to change the way that money under the Ryan White CARE Act is provided to caregivers and states and communities. Today, funding decisions are made according to a rigid geographical formula that takes too little account of the most urgent needs. In other words, you can't set priorities -- that's what that means."

Community advocates agree that the CARE Act must be reauthorized. The Ryan White CARE Act is one of the only pieces of health legislation that mandates a community planning process (for 51 eligible metropolitan areas) and coordination with other healthcare systems. In a reauthorized CARE Act, control over local decision-making and service needs must not be lost to the federal bureaucracy, since local communities are in the best position to assess their own needs, prioritize services, and allocate resources effectively. Furthermore, proposing to focus resources, and the formula which distributes them, is ineffective at best if annual funding is not increased to meet burgeoning demand.

Defending and Enhancing the CARE Act

AIDS is still an emergency, especially among marginalized populations -- low-income people of color, the homeless, drug users, women, gay men, and other populations. Rural communities and urban neighborhoods are disproportionately impacted. Political will is needed to effectively address the epidemic, and that must begin with the CARE Act. Due to woefully inadequate annual AIDS funding from Congress, it can be tempting to focus on fixing all of the problems in our healthcare for people living with HIV/AIDS through legislation like the Ryan White CARE Act. But the CARE Act is not a panacea, and advocates must continue to focus on improving it through the reauthorization process. This is a unique opportunity to retain what works while improving the legislation to be more responsive. National AIDS advocacy organizations are currently developing specific policy positions which may impact on the reauthorized CARE Act, and we should engage in these federal advocacy efforts at all levels.

There are also other proposals like the proposed Early Treatment for HIV/AIDS (ETHA) bill and, more recently, the Institute of Medicine Committee's proposed HIV Comprehensive Care Program (HCCP). But at this point, the Ryan White CARE Act (supplemented by an inadequate Medicaid system for the poorest Americans) is as close as we get to effectively address and fund the domestic AIDS crisis. AIDS is still an emergency and the CARE Act responds to this emergency. Without further funding, it will be unable to do so.

At minimum, the CARE Act needs to be protected. No other piece of domestic legislation has ever received as much scrutiny as the Ryan White CARE Act, with several audits by the Government Accounting Office (GAO) and the Health and Human Services Office of the Inspector General (IG). This doesn't even include congressional inquiries and other highly subjective CARE Act critiques by government reform "think tanks." Generally, Ryan White providers and government grantees have welcomed any and all efforts to demonstrate program accountability, and the CARE Act has held up well in these audits and reviews. As we move towards the expiration of the amended CARE Act of 2000, the community must be diligent in its efforts to ensure that amendments to the CARE Act of 2005 protect the integrity of the current Act while enhancing the system of care which has taken a decade and a half to develop. Clearly, the CARE Act will continue to be effective and accountable.

Let Congress and the President know in no uncertain terms -- PROTECT THE RYAN WHITE CARE ACT BECAUSE AMERICA STILL HAS AIDS. Respond to the AIDS crisis in the nation. Provide much needed increases to the CARE Act and reauthorize the CARE Act in 2005.

Robert Cordero is the director of federal advocacy at Housing Works, the largest community-based, minority controlled HIV/AIDS agency in the country, and serves as a board member of CAEAR Coalition, which advocates for Title I and Title III of the CARE Act.

The Ryan White CARE Act
What Each Section of the Act Covers

Title I provides assistance to Eligible Metropolitan Areas (EMAs) with the largest numbers of reported AIDS cases to meet the emergency primary care and supportive service needs of people with HIV.

Title II provides funds to States and territories for primary health care, including medications through the AIDS Drug Assistance Program (ADAP) and to improve the quality, availability, and organization of healthcare and support services for people with HIV and their families.

Title III supports medical care and early intervention services to people with HIV through grants to public and non-profit organizations such as Community and Migrant Health Centers.

Title IV supports services and access to research for children, youth, and women with HIV and their families.

Part F:

  • AIDS Education and Training Centers (AETC), regional centers that offer trainings for healthcare providers and other people who provide AIDS-related services;

  • Special Projects of National Significance (SPNS), a health services demonstration, research, and evaluation program to identify innovative models of care; and

  • Dental Reimbursement Program, which helps cover dental expenses incurred by people with HIV that aren't otherwise covered.

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This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.
See Also
Purpose of the CARE Act
Guiding Principles for CARE Act Programs
More on the Ryan White CARE Act