E-mail the CoalitionAUGUST-SEPTEMBER GRASS ROOTS ADVOCACY CAMPAIGN
CALL NOTES
ADAP/ATAC Strategy Call, May 23,
2002
BACKGROUND MATERIALS
In May, 2002, a group of interested ATAC members participated in a special conference call to discuss the crisis in many state's AIDS Drug Assistance Programs (ADAPs). This call was suggested by ATAC member Julie Davids who noticed an increase in postings on ATAC's listserve about current and potential limits to treatment access in many state ADAPs. During that call, the group decided to become a subcommittee of ATAC focused on creating a grassroots campaign aimed at obtaining adequate federal funding for ADAP ($162 million increase) in the upcoming appropriations process.
The following is a list of activities and accomplishments of the ATAC "SAVE ADAP" Committee to date:
* Creation/dissemination of four Action Alerts on the current ADAP crisis, the federal appropriations process, and how people can communicate with their elected officials on the issue
* Creation/dissemination of fact sheet on ADAP and the current fiscal crisis
* Assistance with August district meetings focused on ADAP. We know that meetings in Hawaii, Texas, New York, Illinois, and Florida were scheduled in response to SAVE ADAP Alerts.
* Organization of a district call-in week focused on the ADAP message (week of August 26th)
* Organization of a D.C. call-in day (September 4th)
* Organization of a "SAVE ADAP" lobbying event in Washington, DC on Sept. 9th and 10th. The group raised $5,000 from pharmaceutical companies to fund SAVE ADAP members to travel to DC and meet directly with their Members of Congress and advocate for a $162 million increase for ADAP. Over 30 participants came from Oregon, Washington, Maryland, New York, North Carolina, Alabama, and Kentucky. These are all either states with key representatives or states with current/potential ADAP problems. From these lobbying visits came several accomplishments, including interest by one U.S. Senator's office in sponsoring an amendment supporting the $162 million and a sign-on letter by the Congressional Black Caucus asking Labor HHS Appropriations Subcommittee chair Ralph Regula to support this ADAP increase.
* In addition, the group hand-delivered over 100 letters written by individuals around the country about the importance of ADAP funding. One SAVE ADAP member made drop-in visits in numerous Congressional offices, delivered a letter from SAVE ADAP, and discussed ADAP issues with legislative staff.
* Many SAVE ADAP members have also been advocating on ADAP issues at the state-level. A list of these activities and accomplishments is being developed and will be posted in the near future.
July 30, 2002-- The Save ADAP Committee of the AIDS Treatment Advocates Coalition (ATAC) is organizing a grassroots campaign urging Congress to support a $162 million increase for the AIDS Drug Assistance Program (ADAP). ADAP provides access to treatment for low-income people living with HIV/AIDS who are either uninsured or lack adequate prescription drug coverage. The program is a lifeline for thousands of people across the country who otherwise wouldn't be able to afford HIV drugs. See the ADAP fact sheet below for more information.
Right now, many state ADAPs are in a financial crisis. Twelve states are reporting restrictions to treatment access, including waiting lists, while many other states are preparing to implement restrictions in the near future. There are over 500 people on the waiting list for treatment in North Carolina alone. Severe underfunding of ADAP constitutes a public health crisis in America, not only for people living with HIV/AIDS who rely on the program for life-extending therapies, but for all Americans invested in sound health policy. The ADAP crisis is not acceptable given Health and Human Services Secretary Tommy Thompson's recent statement that "No administration in any nation has ever made fighting HIV/AIDS as high a priority as the United States under this administration".
AIDS treatment policy experts have stated that an increase of $162 million from the federal government is needed to help ease the ADAP crisis and enable states to meet the demands of those who rely on the program.
The ATAC Save ADAP Committee is an ad-hoc group of activists who want to make a difference. We know that the best way to convince Congress to act on this issue is for people to communicate directly with their own elected representatives.
That's where you come in. We encourage you to participate in this grassroots campaign by engaging in as many of the following activities as you can:
1: AUGUST RECESS DISTRICT VISITS:
Congress will be on recess from July 29th to September 3rd. During this recess, most members of Congress will be in their home district offices. It is an excellent time to schedule a meeting with your Representative and Senators or their staff to discuss the need for adequate ADAP and other HIV/AIDS funding. So few people ever take the time to meet in person with their elected officials that these visits are one of the most effective ways to bring about positive change. They allow members of Congress to hear directly from those most affected by an issue, such as ADAP funding.
If you are interested in scheduling a district visit, but need some help, we have created a fact sheet with tips on getting started. For a copy of this fact sheet, contact Ryan Clary at (415) 558-8669 x224 or [email protected]
District visits focusing on ADAP are already being organized in some parts of the country by the following people. Feel free to contact them if you are in their area to find out more information:
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David Munar (Illinois) (312) 922-2322, [email protected] |
Robert O'Brien (Pennsylvania) (215) 803-5181, [email protected] |
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Jean-Michel Brevelle (Maryland) (301) 890-5132, [email protected] |
Sue Gibson (Texas) [email protected] |
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Lei Chou (New York) [email protected] |
Mark Garrett (Washington) [email protected] |
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Steve Carroll (Oregon) (503) 288-6582, [email protected] |
We are organizing a "call your district office week" from August 26th to 30th. During this week, people around the country will be encouraged to call the local offices of their U.S. Representative and two U.S. Senators and ask them to support a $162 million increase for ADAP. If enough people make these calls, it will send a clear message to Congress before they go back to D.C. to make final decisions on ADAP funding. Look for an Alert the week of August 19th with more information about this call-in week and a sample phone message.
3: "CALL D.C. DAY": September 4th
We will welcome Congress back from their August recess with a national call-in day reminding them of our message: the urgent need for a $162 million increase for ADAP. Make sure you put this action in your calendar and look for an Alert at the end of August with the message to deliver!
We are relying on you to be part of this important campaign. Without our united voices raised in action, Congress may well continue to underfund ADAP, putting thousands of lives at risk.
If you would like to make sure that you receive all of our upcoming Alerts, e-mail us at [email protected]
For more information, contact one of the following Save ADAP Committee members:
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Kathie Hiers (Alabama) 205-324-9822 ext. 331, [email protected] |
Kevin Nuttall (North Carolina) (828) 251-2229, [email protected] |
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Ryan Clary (California) (415) 558-8669 x224, [email protected] |
Steve Carroll (Oregon) (503) 288-6582, [email protected] |
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Bill Arnold (D.C.) (202) 588-1775, [email protected] |
Robert O'Brien (Pennsylvania) (215) 803-5181, [email protected] |
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David Munar (Illinois) (312) 922-2322, [email protected] |
Sue Gibson (Texas) [email protected] |
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Jean-Michel Brevelle (Maryland) (301) 890-5132, [email protected] |
Mark Garrett (Washington) [email protected] |
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Lei Chou (New York) [email protected] |
Fact sheet: The AIDS Drug Assistance Program Crisis
What is the AIDS Drug Assistance Program?
The AIDS Drug Assistance Program is a federal program funded primarily through Title II of the Ryan White CARE Act. It provides access to HIV/AIDS treatments for low-income people who are uninsured or lack adequate prescription drug coverage. It is administered by the states and in some cases, augmented by state funding. Because it is administered by the states, programs vary widely from state to state, including number of available drugs on the formulary, eligibility criteria, etc.
The current fiscal crisis in ADAP:
ADAP is currently at a budget shortfall of $82 million. Many ADAPs across the country are experiencing financial crises, resulting in limits to treatment access. As of this writing, the following states/territories are reporting some kind of restriction to access, including waiting lists:
Alabama, Georgia, Idaho, Kentucky, Maine, North Carolina, Oregon, South Dakota, Texas, Washington, Wyoming and Guam. There are over 500 people on the waiting list for treatment in North Carolina.
Other states, including Mississippi and New York are reporting that they may need to implement some kind of restrictions soon.
What is driving the ADAP crisis?
There are several factors contributing to the ADAP problem:
Inadequate federal funding (ADAP has received inadequate increases
the past few years)
Inadequate state funding (many states do not contribute at all
to ADAP and others provide inadequate contributions)
Increases in drug prices (several drug companies raised the prices
of their HIV/AIDS drugs at the beginning of 2002, although some
are now offering one to two year price freezes for their HIV-related
drugs for either ADAP only or all payers)
Increase in outreach and testing programs across the country
Increase in the number of people testing positive for HIV and
seeking ADAP services
How people can help:
A strong grassroots campaign is needed to advocate for a $162 million increase in federal funding for ADAP for Fiscal Year 2003 (October 1, 2002 to September 30, 2003). This figure includes the current $82 million shortfall plus $80 million increase needed in the next fiscal year to provide adequate financial relief to ADAP. A working group of advocates from the AIDS Treatment Advocates Coalition (ATAC) has formed to design this grassroots campaign, including targeted "Call Congress Days", writing letters to the editor about the ADAP crisis, and organizing district visits with key Members of Congress during the August recess to discuss the importance of ADAP funding.
To find out how to be a part of this effort, contact Ryan Clary at Project Inform, [email protected] or (415) 558-8669 x224
Participants:
Ryan Clary, Project Inform
Lei Chou, AIDS Treatment Data Network (ATDN)
Danielle Davis, National Alliance of State and Territorial AIDS
Directors (NASTAD)
Chris Aldridge, NASTAD
Julie Davids, ACT-UP Philadelphia
Chris, ACT-UP Philadelphia
Jim Musselwhite, Washington State
Sue Gibson, Texas ADAP advocate
Jerry Spillman, ATAC
Melvin Littles, ATAC
Lynda Dee, AIDS Action Baltimore/ATAC
Richard Jefferys, TAG/ATAC
Call Notes
ADAP Update, NASTAD
Chris Aldridge and Danielle Davis provided a brief overview of the NASTAD/ATDN ADAP Monitoring Project Report. Surveys were conducted of all 50 states, the Virgin Islands, Guam and Puerto Rico.
Current ADAP Restrictions
A survey was done in Feb 2002, and ten states reported institution of one or more program restrictions (e.g. capped enrollment, restrictions on access to drugs). These included Alabama, Idaho, Kentucky, Maine, Oregon, North Carolina, South Dakota and Guam. Georgia did have a waiting list but has recently been able to enroll everyone that was on it. Oregon just had to cap enrollment last week. Chris Aldridge emphasized that these are emergency restrictions, and some programs are restrictive to begin with, e.g. South Dakota still doesn't offer protease inhibitors, Maine has very limited access to these drugs and North Carolina's income eligibility is a measly 125% of the Federal Poverty Level (which comes out to just over $10,000 a year for 2002).
The National ADAP budget was $810 million for FY 2001, which includes Federal funding through a specific earmark, plus voluntary contributions at the local level from Title II and Title I of the Ryan White CARE Act and also specific state contributions that are not linked to the CARE Act.
Trends in ADAP
State Factors
ADAPs vary greatly by state, with eligibility levels ranging from the low of 125% to over 500%. The number of drugs offered ranges from a low of 18 to a high of 471. A subset of ADAPs have chronic restrictions on access.
Feedback from National ADAP Forum
Ryan Clary discussed some of the major causes for concern regarding ADAP funding, including the current economic downturn and resultant state and federal budget shortfalls, increases in drug prices, the President's flat-funded budget request, competing interests such as bioterrorism defense and new technologies/drug classes that ADAP might need to try and cover. At the ADAP forum, almost all the states were predicting a fiscal crisis that would require some sort of rollback of current services. Ryan noted that the current ADAP Monitoring Project Report doesn't reflect these likely future events. Ryan also pointed out that out of the major stresses facing ADAP - inadequate Federal funding, absent of inadequate state funding, increasing drug prices and increased utilization - all apart from utilization can potentially be addressed through advocacy.
Current Situation and Possible Advocacy Strategies
In response to a question from Julie about what people can be doing now, Ryan outlined the current situation:
In terms of the best tactics, Lynda noted that nothing breeds success like success and that people should be encouraged to post successful strategies they've used in ADAP advocacy. Julie suggested that ATAC's mentoring ideas could be brought to bear by hooking up experienced ADAP advocates with people interested in starting to advocate either at the local or federal level. Ryan talked a little about the ADAP Working Group (AWG) which has been the traditional mechanism for advocating for ADAP funding at the federal level - the AWG is a coalition of community groups and pharmaceutical industry representatives that started in 1995 and has been highly successful at securing appropriations increases in past years. Lynda described her experience with the group and the inherent tensions of community and industry attempting to work together. Ryan reported that these tensions have rendered the AWG very dysfunctional recently, primarily due to a slew of drug price hikes on the part of most of the companies involved. The original ADAP supplemental request was $52 million, but had to be recalculated and ended up at $82 million solely due to the drug price increases. Additional structural and communication problems have also affected the AWG's ability to function, leaving something of a void in the area of ADAP advocacy. There seemed to be a consensus that an ATAC ADAP advocacy group could potentially work in tandem with the AWG while retaining independence.
Ryan also provided a brief update on the Fair Pricing Coalition: there is currently a sign-on letter circulating that demands at least a two year price freeze for ADAPs. Sign-on has apparently been slow and people and organizations interested in signing on can contact Martin Delaney at [email protected]. Ryan will try and get the letter re-posted with current sign-ones so people can see who is missing.
Chris from NASTAD reported that the 340B Coalition (a group made up of entities, including ADAP, that receive discounted drug prices through a special federal program called 340B) is considering an advocacy effort aimed at increasing the discount (which is given in the form of a rebate) from 15% to 20%. NASTAD will try and keep ATAC in the loop about the progress of this effort so that supportive actions can be planned.
Lei Chou from ATDN, co-author on the ADAP Monitoring Project Report, raised a number of additional concerns about the current status of ADAP. The current budget projection does not take into account changes in enrollment patterns, and the economic downturn and associated job losses are likely to lead to an increase in the number of people with HIV without health insurance who will need to turn to ADAP for help. For example, enrollment in North Carolina's ADAP has doubled over the past year. Georgia's enrollment increased 44% over the same period, which translates into over 1,000 new clients. ADAPs cannot budget for such scenarios, and nor can they budget for surprise drug price increases like those that occurred recently. Lei also pointed out that ADAP advocacy needs to be ahead of the curve - by the time the symptoms of an ADAP crisis show up, it is typically too late to do much about it because the federal and state appropriations processes are completed.
Lei also talked about the potential impact of expensive new treatments such as T20 for HIV and pegylated interferons for hepatitis C. Without state-level advocacy, these treatments are unlikely to get on ADAP formularies. Although most of the larger ADAPs have medical advisory boards that include community members, this is not the case in all states, and some small states have no formal advisory board. There was some debate about whether T20 might conceivably replace some of the drugs people would be using if they were on multi-drug (eg 4-6 antiretrovirals) regimens and thus be budget neutral, but people felt that this wasn't clear from the current data and may not turn out to be the case. Sue Gibson from Texas felt conflicted about advising the ADAP to cover the expensive hepatitis C drugs given their fairly miserable success rate and questioned how the companies could be motivated to develop better treatments.
Update from Washington State
Jim Musselwhite reported that WA ADAP is facing a $1.3 - 1.7 million shortfall between now and June 2003. Even if the requested federal ADAP supplemental of $82 million comes through it would mean an additional $800,000 for WA, still leaving them with a shortfall. WA ADAP has seen increases in both enrollment and the utilization of the program by enrollees, along with a decrease in state dollars for the program. The ADAP advisory group has implemented or is considering a number of potential measures to try and address the current situation, including:
WA ADAP also has a program that pays for commercial insurance coverage for eligible clients, but the insurance industry is currently lobbying to try and make it illegal to purchase health insurance with state funds.
Wrap Up
Jerry Spillman from ATAC asked about whether Sen. Dianne Feinstein in California is doing anything on the ADAP issue. Ryan reported that while she's not willing to sponsor an amendment requesting the ADAP supplemental it wouldn't hurt to call and ask her to take some leadership in supporting an amendment if it can be secured.
Chris Aldridge let people know there is a drug pricing brief available online that provides more details on the discounts obtained by ADAPs (http://www.atdn.org/access/adap/price2002.pdf).
Julie agreed to post an alert to try and generate calls to Congress and to append Ryan's original alert in case people missed it. Ryan agreed to post info for anyone that might know people in WA who could contact Patty Murray (although this has since changed to an effort to try and get Sen. Gordon Smith from Oregon to sponsor the amendment - see above). Everyone agreed to try and post more about their advocacy efforts and congressional calls to the ATAC list to try and generate more interest in the issue among ATAC members.
The group decided to continue meeting by phone every 2-3 weeks
to track progress.