PI Action alerts & updates ... 1996

President Clinton Announces Emergency $65 Million
Increase for AIDS Drug Assistance Programs

Amount Signals Support, But Remains Inadequate to Meet Growing Need

Grassroots Response Needed to Obtain Significant Increase in U.S. Senate

On July 23, President Clinton announced that he is requesting an emergency $65 million increase in Fiscal Year 1997 funding for the AIDS Drug Assistance Program (ADAP). This proposal would be in addition to $52 million in emergency FY 1996 funding that was approved by Congress earlier this year and already included by the House of Representatives in its FY 1997 appropriations bill. While the President’s support for this life-saving program should be acknowledged, his proposed increase falls far short of the $195 million increase identified by experts as needed to bring ADAP up to an adequate level. Grassroots efforts must focus on the U.S. Senate to increase the President’s proposal. The Senate is expected to review the proposal in early September after its month-long recess. Please write, call, and/or meet with your U.S. Senators during the August recess and urge support for the highest emergency ADAP increase possible!!

Action Needed:
Using the following background information and the enclosed sample letter for guidance, write your two U.S. Senators and urge them to support an increase of $195 million in FY 97 targeted AIDS Drug Assistance Program funding. Explain how access to promising new treatments are important to you, people you know, your clients, etc. Also explain the fiscal benefits of maintaining health and quality of life. Please remember to send us copies of your letters and let us know of any responses you receive!!

Follow up your personal letter with a phone call to your Senators reinforcing your support for this program. You can call the Capitol Switchboard at 202-224-3121 and ask to be connected to your Senator’s office.

Share this Alert with your friends, co-workers, loved ones, etc. Similar to our success in obtaining the $52 million emergency ADAP increase earlier this year, it will take a massive grassroots effort to secure a significant increase in this year’s budget cycle! ADAPs are currently being forced to close enrollment and limit access. This increase will be essential in saving the program.

The Senate will be on recess for the month of August. Now is an excellent time to request a meeting with your Senators or their key staff in their district offices. Bring a small group of HIV/AIDS advocates from your community and speak directly about the importance and cost-effectiveness of the AIDS Drug Assistance Program. Meeting with your elected officials is much easier than it seems and probably the most effective advocacy tool. If you need help getting started, scheduling an appointment, or obtaining helpful background materials, please call Ryan Clary or Anne Donnelly at 415-558-8669.

In all of your communication with elected officials, support funding for all HIV/AIDS care, research, prevention, and housing programs. The federal government’s response to the epidemic must be comprehensive, addressing all components adequately.

Sample Letter on Emergency Supplemental ADAP Funding Request
The Honorable _______________
U.S. Senate
Washington, DC 20510

Dear Senatorm _________________:I am writing to urge you to support a $195 million increase for the AIDS Drug Assistance Program (ADAP) for Fiscal Year 1997. While the President’s request for a $65 million increase is a step in the right direction, it is not enough to meet minimum program need. Experts have indicated that the $195 million ease is needed to bring this lifesaving program up to a minimal level of service.

Insert your personal story here. If you or someone you know accesses the ADAP in your state, or could benefit from the program if new drugs were available, discuss that here. If your state is limiting enrollment or access, detail that problem. You can also simply discuss your treatment needs and/or results from newly approved therapies; i.e., 3TC, protease inhibitors, etc.

In addition to the $195 million increase for ADAP, I also support the highest possible increases for all HIV/AIDS research, care, prevention, and housing programs. The federal response to this epidemic must be comprehensive and address all components. For many individuals, adequate housing, nutrition, support systems, among other programs are key to accessing treatment.The recent FDA approval of new and promising treatments has generated hope and excitement among many people living with HIV and AIDS. However, the fiscal crisis in ADAPs nationwide has created significant concern that those who need these treatments the most might not have access to them. The AIDS Drug Assistance Program is a cost-effective and essential service for people living with HIV/AIDS, as it allows many participants to continue to work and be productive while still affording necessary treatment.The federal government has wisely invested billions of dollars in AIDS research and it has a moral obligation to help deliver effective new treatments to those facing life-threatening illness. Please support and expand the President’s efforts to increase treatment delivery.

Sincerely,
Your Name

Background information:
AIDS Drug Assistance Programs (ADAPs) provide HIV/AIDS treatments at low or no cost to people living with HIV and AIDS on a limited income in all fifty states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands. This treatment access program is intended to serve the low-income HIV positive person who is not eligible for Medicaid coverage and either has no or inadequate prescription drug coverage under private health insurance. The programs are generally funded by a combination of federal (Ryan White CARE Act) and state funds. ADAPs provide a life-saving, cost-effective, and essential service for people living with HIV/AIDS. For many ADAP consumers, the assistance offered by the program allows them to continue to work and be productive while still affording necessary HIV treatment.

ADAPs across the country are currently facing fiscal crises due to a number of factors, including inadequate federal and state funding. The recent Food and Drug Administration (FDA) approval of several new and costly drugs, including 3TC and three protease inhibitors, saquinavir, ritonavir, and indinavir, has also placed a financial burden on these programs. Promising clinical studies on these treatments have instilled hope among people; therefore, enrollment in many state ADAPs is increasing significantly. In addition, since protease inhibitors are approved for use in combination with one or two other antivirals, the overall yearly cost for an individual’s treatment regimen could potentially double or triple.

Earlier this year, The National ADAP Future Funding Working Group, a coalition of community advocates and pharmaceutical industry representatives, was formed to devise a strategy for dealing with this problem. In March, President Clinton requested an emergency $52 million increase for ADAP as part of the FY 1996 budget, which was approved by Congress and is now being spent. While this increase was short of the $75 million identified as the minimum needed to adequately address the problem for the remainder of that fiscal year, it signified that the President and Congress recognized the importance of this treatment access program and that there was bipartisan support for increasing needed funds.

Since then, the crisis in many state ADAPs has continued. Several months after the FDA approval of protease inhibitors, only 14 states are offering at least one of them on their ADAP formulary. Last week, the state of Washington announced that it was freezing enrollment for its ADAP and that enrolled participants not currently accessing protease inhibitors would not be able to start that therapy. Illinois has also capped its enrollment, and to pay for one protease inhibitor, has removed access to over 80 other drugs, including many that fight opportunistic infections. Other states are expected to announce similar measures in the next few months. While some states such as California, New York, and Maryland have responded to the ADAP crisis by significantly increasing state funds, many others are either ignoring the problem, or designing band-aid solutions.

If the current ADAP crisis is to be dealt with seriously, both the federal and state governments must support significant increases in funding so that every HIV positive individual without unlimited income can benefit from the successes of government-funded HIV/AIDS research. The ADAP Future Funding Working Group has determined that $195 million in new FY 97 ADAP funding is needed to bring the program up to a minimal level of service. In addition, state governments must increase their ADAP contributions by a minimum of $58 million to help cope with this problem. It is cost-effective and humane to increase funding now, so that individuals can remain productive and off other costly government programs.