Editor's Note: Where's the Silent Majority?
For more than 1,000 days HIV prevention and care initiatives have been held hostage by the federal government. This national crisis has caused great distress to those of us on the front lines of the AIDS movement. Highly successful HIV prevention strategies targeting individuals and communities most severely impacted by HIV have been under constant scrutiny from the government. While thousands of individuals become infected with HIV and nameless others living with HIV and AIDS struggle to access a bankrupt healthcare system, the government continues to mischaracterize scientific facts to bolster political agendas in areas ranging from abstinence education and condom use to missile defense.
I for one am fed up watching advances in science and healthcare initiatives spiked with politics to justify conservative policies. I am sick and tired of seeing appointments to key scientific advisory committees given to people with political, rather than scientific credentials. AIDS is a complex disease that requires a sophisticated response. There are still far too many men, women and children who do not have access to comprehensive health care and lack adequate insurance coverage, too many are living with untreated mental health illnesses, too many are homeless and hungry, and far too many of them are still living in fear and isolation as the stigma attached to HIV disease continues to permeate families and communities nationwide. Diverting AIDS dollars to promote an ideological agenda and ineffective programs is a waste of scarce resources, and more importantly, a waste of lives.
But what is even more troublesome is the economy within the AIDS movement. Too many of us have become too comfortable with our "AIDS jobs," our "AIDS stipends," and our "AIDS subsidies." Once upon a time, working for a community-based organization was about local volunteerism; about giving back to the community that had supported you in one way or another at one time. If you got paid to do this work it was a nice bonus. Yes, as we grow older our perspectives on life also changes, however, working at a community-based, non-profit organization is still about giving back, and sometimes giving back means sacrifice and doing without. While the non-profit arena brings a "relaxed" work environment, it's not glamorous. The hours are demanding, the job expectations are often unrealistic, and for the most part the pay sucks. I've seen many friends struggle with the decision of moving from the non-profit to private workforce during the last couple of years. But it's a decision we all have to eventually face.
This problem also extends into the community of individuals who survive and thrive because of "AIDS stipends." Far too many of us have become accustomed to, too dependent upon the benefits ... the vouchers, the subsidies, the pantries, the AIDS Drug Assistance Programs, Medicaid and Medicare. We expect these benefits to continue rolling in month after month, indefinitely. And if there's a problem with delivery, we expect someone else to handle it.
Well, for those who haven't been paying close attention, the economy sucks big time and the government is cutting back on the Ryan White CARE Act and all the programs that have "supported" us over the last decade. Reports indicate that 43.6 million U.S. citizens were uninsured in 2001. That figure is up 2.4 million from the year 2000. Today more than 35% of Americans live without insurance. This condition has been brought on by higher unemployment rates and health care costs that continue to skyrocket. Small not-for-profit and for-profit businesses are making difficult choices of passing on escalating insurance premiums to employees or canceling coverage all together. As a result many individuals are making difficult decisions to live with an untreated illness, like HIV, or racking up bills they will never be able to pay.
While many of us have been asleep at the wheel, during the last three years, nearly three million domestic jobs have been lost and the number of men, women and children living below the poverty level continues to climb. Georgia, which already has a struggling ADAP, is looking at a 10% cut in HIV/AIDS funding for fiscal year 2004 and 2005. South Florida has seen its waiting lists expand as the number of HIV/AIDS patients seeking assistance grows faster than the federal Ryan White grants. An increase in domestic AIDS spending proposed in an amendment introduced by Senator Charles Schumer (D-NY) failed in Congress in September. With an increasing number of HIV-positive individuals unable to afford the skyrocketing costs of antiretroviral therapy and management medicines, the planned domestic spending for HIV/AIDS care in 2004 displays a disturbing lack of concern for individuals living with HIV and AIDS in the U.S.
Far too many of us spend too much time making obscene references to being the "core" group of this organization or that movement; or pointing fingers and accusing "others" of taking their slice of the pie. Well, it doesn't matter if you're a gay man, a single mother of four, or a clean and sober ex-offender -- it's five minutes to midnight, Cinderella. And it ain't gonna be pretty at half past the hour. If you thought the last three years were tough, you ain't seen nothing yet.
The bottom line is that with cuts and flat funding for Ryan White CARE Act programs, an increasing number of uninsured, underinsured and poor individuals living with HIV will have reduced access to care and treatment.
Somewhere out there I know that there's a silent majority in this struggle against AIDS; a majority that feels the pinch of the economy, that questions the government's AIDS policy and wants to change the status quo. Unless more of us are willing to speak up and take action, in 2004 and beyond, community-based organizations will be expected to provide the same services with less funding and individuals living with AIDS and families impacted by HIV will be forced to make ends meet with less assistance.
Now is the time, more than ever, that the voices of men and women living with and impacted by HIV and AIDS must be heard on a local, state and national level. You can no longer afford to sit on the sidelines and expect someone else to do it for you or to give it to you. It's time to put an end to the "gimme syndrome" and the "pity party."
What can you do? What should you do? Get involved. Organize. Strategize. Mobilize. Vocalize. Vote.
I challenge each of you to become involved in the AIDS movement -- to further the ability of people living with HIV to have access to the services needed to live healthy and productive lives and maintain the personal rights and liberties that many of us take for granted. In the words of Margaret Mead, "never doubt that a small group of thoughtful committed citizens can change the world ... indeed it's the only thing that ever has."
Be Strong. Stay Safe.
Charles E. Clifton is Executive Director/Editor of Test Positive Aware Network.
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