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A Call to Action: Strategies for Effective Advocacy in Challenging Times

January 2004

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

When President Bush took office almost three years ago, there was considerable anxiety about how people with HIV/AIDS would fare. His record on AIDS issues as governor of Texas was not impressive, and he spoke little about what he would do to fight the disease during his campaign.


Little Did We Know How Bad It Would Be

Looking back, there were clearly disappointments for people living with HIV under past administrations. Even President Clinton failed in many ways in the fight against AIDS. His funding requests for AIDS programs always fell far short of what was needed. The HIV immigration ban was codified under his watch. He failed to lift the ban on federal funding for needle exchange programs -- something he now regrets.

However, our challenges have multiplied and dramatically changed under the Bush Administration. President Bush has not only shown little to no leadership in fighting the epidemic, but his administration has shown itself to be experts in "bait and switch" tactics. They promise productive action while actively pursuing an agenda that will reverse gains made in the fight against HIV disease.

The President has shown no leadership in providing adequate funding for the programs people depend on. For the first time since the federal government started funding AIDS programs, President Bush proposed flat funding -- resulting in no increases for HIV care and treatment programs in his first two budgets.

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He also began promising increased commitment for certain programs but then failed to deliver. For example, he proposed a $100 million increase for the AIDS Drug Assistance Program (ADAP) in the 2004 budget, but then failed to insist that Congress include that funding in its appropriations bill. Meanwhile the ADAP crisis rolls on, with many states forced by lack of funding to implement limits to treatment access, including waiting lists.

Even the President's highly publicized promises on the global AIDS pandemic have proven to be little more than rhetoric. He has neglected to use his influence in Congress to make the funds he requested in his initiative a reality. In the meantime, millions are dying in developing countries for lack of access to treatment.

And the challenges run even deeper than these broken promises. The Bush Administration enacted tax cuts at the same time they are leading the country into war. These cuts cripple our country's ability to fund the safety net healthcare and support programs that serve low-income, vulnerable and senior Americans. In addition, the billions of dollars requested for the war in Iraq means that even less money is available for essential healthcare and other domestic programs. This administration appears to be leading the US government out of the business of healthcare, particularly for poor and low-income people, and working toward dismantling or disabling programs like Medicaid and Medicare.

This year the Bush Administration proposed harmful changes to Medicaid, the largest payer of healthcare for people with HIV. The proposal -- which fortunately stalled in controversy for this year -- would have ended the program's entitlement status (meaning everyone who qualifies for the program receives services) and turned this vital safety net program into a block grant. A block grant will cap the federal money that funds Medicaid and, if the money ran out or if some new disease or epidemic struck, services would have to be limited and in some cases even eliminated.

The Administration also has made much of its support for a prescription drug benefit for Medicare, the insurance system that serves seniors and some disabled people. However, their proposed benefit would be of little help for disabled people, including those with AIDS, or seniors who rely on several and/or high cost drugs. Their proposal leaves a large gap in drug coverage that most people couldn't pay out of their own pockets.

President Bush's philosophy on the role of government is dangerous to people living with HIV. He has shown little interest in ensuring that vulnerable populations have access to essential healthcare. He is willing to break promises made to people living with HIV and vulnerable Americans by under-funding the Ryan White CARE Act and threatening the entitlement programs they rely on, such as Medicaid and Medicare.

Unfortunately, the new challenges posed by the Bush Administration come at a time when the AIDS policy advocacy movement is facing its own troubles. Funding for policy staff at AIDS organizations has started to dry up, resulting in far fewer people available to advocate with Congress and the Administration. There are also few staff left to run grassroots networks necessary to ensure that those most affected by HIV get the information they need and communicate with their elected representatives. Individual activists not associated with an organization find it challenging to get support for their work.

However, recently, this has started to change for the better. Recognizing that the best chance of being effective is by working together, policy advocates began forming coalitions around specific challenges. These included defending HIV prevention programs, successfully defeating the President's Medicaid proposal, and fighting for adequate funding for HIV/AIDS internationally. Activist groups such as ACT UP/Philadelphia and HealthGAP are working closely with policy organizations on shared strategies and community mobilization.

Local and statewide coalitions are forming, such as the North Carolina AIDS Action Network in response to the ADAP crisis in their state and the lack of adequate funding for other essential programs. In some cases, individuals have started to fill in gaps on their own by forming their own groups.

One such example is the AIDS Treatment Activists Coalition's "SAVE ADAP" committee. This was established by people who experienced the ADAP crisis locally and wanted to create a grassroots campaign to get adequate funding from the federal government. As SAVE ADAP grew, policy advocates associated with organizations joined the effort. The result is a highly effective coalition of individuals and organizations working together for a common goal.

While all of these are positive changes, we will only be as successful as the collective efforts of everyone who gets involved. That's where you come in. Our battles right now are so important that everyone who is affected and/or infected must be a part of the solution. Our elected officials are affected by what they hear from their constituents with regards to HIV policy and funding. In other words, the best chance we have of securing adequate funding for AIDS programs is to make sure that elected officials hear the demands directly from their own constituents.

Similar to developing a strategy around treatment decisions, ensuring effective policy requires a combination of strategies. Policy advocates and activists are changing their strategies to meet the new challenges. However, one of the most effective ways to make change is your involvement as a citizen advocate, a person living with HIV or who cares for someone with the disease or a community at risk. It will also be important for you to develop and use the best strategies to build relationships with the elected officials who make the decisions that affect your life.

Below you'll find some strategies that might help you take action:


Educate Yourself

Take some time to learn more about policy issues and what role you can play as an advocate. While you don't have to be an expert on the issues or the legislative process to be effective, it does help to understand the basics. For example, it is helpful to know what decisions are made at the federal, state, and local levels so that you can target your advocacy with the right elected officials. It's also a good idea to pick one or two issues that you want to focus on so that you don't get overwhelmed.

You can find many good resources on Project Inform's public policy resource guide at www.projectinform.org/org/presources.html. You will find a host of national, state, and local organizations that engage in AIDS advocacy on a variety of issues. Many of them have Web sites with fact sheets on key domestic and international policy issues. Several maintain grassroots networks, organize visits with legislators, and send action alerts. Remember, you can ask local, regional, and national community based organizations for assistance and tips on how to start developing a relationship with your elected officials.


Join an Advocacy Coalition

If you have time to get more involved in advocacy, you might consider being part of a local, state, or national advocacy coalition. These groups go beyond communicating with their own elected representatives and design campaigns to achieve a particular policy goal and/or to mobilize grassroots support. Even if you don't have experience with this type of advocacy, you bring expertise based on your own life experience.

Most groups are happy to provide training or mentorship in advocacy work. The most useful members in a coalition are those willing to learn and take on work. You might contact some of the organizations in your area on Project Inform's resource guide and ask what coalitions you can join.

While many national coalitions are composed of organizations, recently several new groups have formed with individuals as members. The AIDS Treatment Activists Coalition (ATAC) is a national coalition of new and longtime treatment activists that is working to advance the AIDS research agenda. You can find more information at www.atac-usa.org. SAVE ADAP is a committee of ATAC and is a national group of policy advocates and treatment activists focused on grassroots strategies to get adequate funding for ADAP. For more information about this group, email rclary@projectinform.org.

Another new coalition is the HIV Medicaid and Medicare Working Group, which originally came together to fight the harmful proposed Medicaid reforms. The coalition now advocates to protect and expand Medicaid and is also working to influence the debate on a prescription drug benefit for Medicare beneficiaries, focusing on the needs of people with AIDS. New advocates are always welcome to this group. For more information, contact Lei Chou at theaccessproject@aol.com.


Prepare for 2004 Election

One of the most important ways you can get involved in AIDS advocacy is by getting involved in the 2004 election. If we elect the right leaders, fighting for adequate funding and protecting safety net programs like Medicaid would be much easier. In November of 2004, not only will we decide who should lead the country for another four years, but all House Representatives and one-third of the Senate are up for re-election. This provides an excellent opportunity not only to elect new representatives but to educate candidates as they campaign.

One way you can get involved is by joining Project Inform's Treatment Action Network (TAN). In 2004, we will send TAN members a fact sheet with tips on getting involved in the election process, including a listing of resources and suggested questions to ask candidates when they come looking for your vote. To join TAN, go to www.projinf.org/org/tanform.html , or send an email to tan@projectinform.org with "subscribe" in the subject field.

The political environment has shifted dramatically in recent years. The programs that support people living with HIV and those at risk of infection are suffering. Scientific research is being affected by advisory boards driven by ideology rather than science. Healthcare programs are threatened by inadequate funding. Entitlement programs are increasingly under subtle and overt attack as the government pulls away from its "commitments." The advocacy groups acting on behalf of people living with HIV continue to work but with fewer resources, less access, and reduced influence.

Elected officials do listen to voting constituents. Your help and action are essential to making a difference in this environment. Whether it's writing to your elected representatives for the first time, challenging candidates about their vision for fighting AIDS, or joining a coalition and organizing your own community, you can be part of the solution.

After all, if not you ... then who?


Back to the Project Inform Perspective January 2004 contents page.

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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This article was provided by Project Inform. It is a part of the publication Project Inform Perspective. Visit Project Inform's website to find out more about their activities, publications and services.
 
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