Michael Emanuel Rajner

Are you in the Fight to End AIDS?

Filed By Michael Emanuel Rajner | May 18, 2010 3:30 PM | comments

Filed in: Action Alerts, Living
Tags: ADAP, Denver Principles, HIV/AIDS

As massive dark gray clouds cast a murky shadow, like that of the uncontrolled plumes of oil in the Gulf Coast, for more than 1,500 people living with HIV/AIDS in 10 states are languishing on a wait list to access lifesaving medications, there is little action happening in the United States Congress to address the current ADAP crisis.

As apathy continues to paralyze people living with HIV/AIDS and the organizations and churches to serve them, another 21 states have taken cost cutting measures but have not ruled out the likelihood of instituting a wait list. This crisis could be the Hurricane Katrina for many low-income people living with HIV/AIDS.

While 79 Members of Congress, all Democrats with the exception of one lone Republican, have already signed onto to a letter to President Barack Obama urging him to "bridge the gap" for more those in the United States who have been shut out from accessing their HIV-medications due to a multitude of factors. Capacity for these programs is maxed out or close to it, states with high unemployment rate continue to be a major contributing factor during our nation's struggle with a struggling world economy.

In mostly southern states, state legislatures are failing miserably to fund and support critical programs, such as the AIDS Drug Assistance Program (ADAP), for their most impoverished residents living with HIV/AIDS. Across the country, it's not hard to find amazing and inspirational champions working hard at the AIDS service providers and LGBT-organizations providing basic needs.

While we can often find compassion, you will find few organizations willing to focus beyond their organizational goals and billable units. Many of these organizations are reluctant to engage the community at-large and build an army of volunteer advocates as valued stakeholders.

In 2008, I served on the nominating committee for my local NAACP chapter in Fort Lauderdale, and during that time of service, I was taught the difference between "generosity" and "reciprocity." People living with HIV/AIDS don't need the generosity and pity from others, what many living with HIV/AIDS need is the opportunity for organizations to invest time in us, as a community and community of clients, to teach us the basics on how to effectively advocate for our needs. We need to learn how to engage as individuals for our own needs while at the same time learning how to translate our case advocacy (or individual advocacy) in cause advocacy to make an impact system-wide so others are not forced to endure a painful struggle.

The issues impacting our lives are not always unique as people living with HIV/AIDS, however, the stigma and discrimination that people living with HIV/AIDS suffer is. As a community of people living with HIV/AIDS, we need to be engaged and support for us to share our experiences and recommendations as for workable solutions to ease the burden on everyone.

Since 2005, I have traveled several thousand miles around the country, either in an individual capacity or with the Campaign to End AIDS (C2EA), National Association of People with AIDS (NAPWA) or the Florida GLBT Democratic Caucus. Every time I travel, I hear someone new share their story and their hardship. One of the common messages I hear is how people living with HIV/AIDS are largely marginalized by their AIDS services provider as viewed as a victim. The Denver Principles clearly lays it out that we are not victims. We are survivors who struggle daily. We struggle each day working to restore the dignity, hope and respect for all in the HIV/AIDS struggle. It's just criminal for others to view ourselves as helpless.

We condemn attempts to label us as "victims," which implies defeat, and we are only occasionally "patients," which implies passivity, helplessness and dependence upon the care of others. We are "people with AIDS" --Statement from the Advisory Committee of People with AIDS, June 1983, Denver, Colorado, National Lesbian/Gay Health Conference

Denver Principles - Fighting for our Lives.jpg

Despite the lack of support you may be receiving from your AIDS service organization, do not think for one minute that you are not an instrument capable of creating positive change in your community, nation or world. Each of us is born with abilities and talents just waiting to be tapped. Later in the week I plan to begin reflecting on some of my own success stories, as part of an effort to break down the iron curtain holding so many of us back. One person can play a pivotal role to contribute to making the impossible, possible.

If our world really wants to see a drastic reduction in the number of new HIV-infections, close the disparity gaps and increase access and retention to care, treatment and support services, then we need to answer President Obama's call to action when he was first elected and launched a series of town hall meetings for community members and other stakeholders to gather and share their insight and recommendations for our nation's first National HIV/AIDS Strategy. Sadly, for the several community discussions hosted by the White House, a glaring number of seats were empty as was a glaring number of organizations and supposed community partners. There was a lack of interest in our community to participate in a process designed to engage all of America.

Now is the time to support President Obama and the White House/Office of National AIDS Policy to develop and implement a comprehensive plan. Without our support of President Obama, Congress will not act when action is needed. Without the switchboards being flooded by constituents to say, I have AIDS and I need my member of Congress to support emergency funding for the AIDS Drug Assistance Program, Congress will not act. With you sharing your story and struggle, the discussion ends and death toll rises.

As an unfunded volunteer community organizer, I need to take a moment and admit that over the past few months AIDS-related fatigue and exhaustion has taken a toll on my health and I'm beginning to learn how to better balance life. Learning how to seize opportunities like strapping my kayak to the roof of my Subaru and hit the ocean's waves head-on. And on other occasions, to recognize and accept when I just need to stay in bed and rest.

Each day is a struggle and sometime a living hell when others consider your passion admirable, but deep down, you know that passion is a double edged sword and among the few forces giving you purpose for another day.

Please join me now and make 2 calls today to urge President Obama and the US Congress to act provide an emergency $126 million in federal funding to help those living with HIV/AIDS to access their lifesaving HIV-medications.

Call the White House on their comment line at: (202) 456-1111 (10 minute possible hold-time)
Or submit a written comment at: http//www.whitehouse.gov/contact


Call the Capitol Switchboard at (202) 224-3121 and ask to be connected to your Representative's office or call your Representative's office directly. When connected, ask to speak to the staff member who handles domestic health policy for the Representative and urge your Member of Congress to:

My name is _______________, and I'm calling to urge [President Obama / my Congressman/woman] to provide an emergency supplemental of $126 million for the AIDS Drug Assistance Program (ADAP). Too many people in America are going without their AIDS medications. Please help us.

Feel document your call in the comments section of this blog.

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I made the calls and wrote the letter. Keep up the great work -- and the life balance.

The governments response to AIDS has always been piss poor and that standard continues under the Obama administration.

Thank you for your work and for this passionate call to action, Michael. I especially appreciate the very specific instructions on how constituents can make a difference (made those calls, thank you) and my only feedback is to feature those instructions "above the fold" so people know, right away, that they can do something.

I'm also glad to know you have a sense of your personal boundaries and limitations. Your contributions are precious but your resources must be "renewable." Thanks again.