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November 21, 2006
SOLIDARITY IN THE SOUTH
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Columbia, SC- Yesterday, over a hundred South Carolinians living with HIV/AIDS and supporters marched the two-mile path from the Department of Health and Environmental Control to the State Capitol to memorialize their three compatriots who have died while on the state-mandated ADAP waiting list.
Activists came from all over the state, all over the South, and all over the country to ask for the funding necessary to prevent more death. At press time, state officials couldn't say if they would take the step marchers wanted: an immediate $3 million funding request to end waiting lists for AIDS drugs in the Palmetto State.
After a week of intensive organizing, Karen Bates, South Carolina-Campaign to End AIDS (SC-C2EA) co-chair, used a cane to make her way through the streets of Columbia. She suffers from neuropathy, and her feet can't sense the ground anymore.
Jessica Mardis, an HIV-positive, single mother from Mississippi, scooped-up her son Gabriel and settled him onto her shoulders as she chanted, "End the death list!" and "AIDS drugs now!"
South Carolina Campaign to End AIDS chair, Stephanie Williams, who had just left the hospital, put on a coat of fresh lipstick, settled into her wheelchair, and got a push from Charles King, C2EA's national chair.
Over a hundred others formed a slow moving, singing procession through Columbia that drew in by-standers from the sidewalks. Flags snapping in the wind, the group marched through mid-day traffic and downtown lunch hour, past a half-decorated Christmas tree and the Confederate flag to the steps of the State Capitol. There, they prayed.
"There are people who do not care enough. There are governments who do not care enough. There are politicians who do not care enough. God, forgive those who do not care enough," said Pastor Andy Siddens of Garden of Grace United Church.
"Are we disposable people?" preached Siddens. "Does God say we are disposable?"
The crowd thundered back a resounding "No!"
Rally at the State Capitol
Introduced by emcee Arlene Rustin, an HIV-positive woman from Columbia, South Carolina, Bates reminded the crowd of their purpose: "The only way to get off that waiting list is for someone on ADAP to die, and you get their slot. Or you die. ... No one in the US, or anywhere in the world, should die because they cannot get the medication they need to live."
For those just tuning in, last summer, state officials set up a waiting list for the AIDS Drug Assistance Program (ADAP) that provides HIV/AIDS-related medications to low-income, uninsured and underinsured people living with HIV/AIDS, citing funding shortfalls. The waiting list for care has grown quickly, and many people with AIDS here are either going without treatment or getting inadequate care.
"The same politicians who come to our churches at election time...they do not care enough to care for the least of these," said Rev. Haynes Gainey, pastor of the Edisto Fork United Methodist Church in Orangeburg, SC. "If they do not sound the alarm on our behalf, we will check the record" and vote them out of office.
Many speakers in the broad coalition let state politicians know that both lives and their jobs are on the line - strong voices included Donna DeWitt, president of the state AFL-CIO and co-chair of the South Carolina Progressive Network and Melissa Moore, Field Director of the South Carolina Equality Coalition.
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Vowing to stand with people living with HIV/AIDS, Moore had the crowd pull out their cell phones for a hundred simultaneous calls to SC Health Commissioner Earl Hunter to ask him to immediate request the Budget and Control Board to approve $3 million in emergency state funding for ADAP.
Others around the country joined the calls to Hunter, SC Budget and Control Board Executive Director Frank Fusco, and President Bush.
DHEC swamped
According to one advocate, "I just called the number for Commission Earl Hunter and was transferred to the STD hotline where the woman said they were 'overwhelmed' with calls in reference to the ADAP situation and that every call was being noted and the information sent to the Commissioner. So that sounds like good news. They even sounded happy to be getting the pressure, I would say."
In fact, DHEC spokesperson Thom Berry said, "We're just like everyone else. We're faced with a situation where we're forced to make cuts. We don't want people to sit on this waiting list, and we're trying to fill the [funding] gap."
According to DHEC, the state lost over a million dollars in federal funding just this year. With state appropriations a mere $500,000 they say they're trying to stretch the money they have.
Right now, South Carolina relies mostly on pharmaceutical charity programs to make up for the ADAP shortfall (after encouraging folks to apply for Medicaid and Medicare coverage for which they may not be eligible or may have to wait up to two years).
SC official claim this strategy gets medications to all but a handful of wait-listed people - but they acknowledge that case managers are swamped with the "enormous" amount of paperwork and that comprehensive hig-quality health care just isn't in the cards for those who are waiting.
"This is a temporary solution only. We're working at the state level and with our Congressional delegation to get Ryan White reauthorized," said Berry. "We'll get through this."
Advocates from all over the country promise to push DHEC to walk the walk and not just talk the talk.
What we need: an end to the 'death list'
South Carolinians- people living with HIV/AIDS and local leaders- said they were moved and inspired by the people who traveled to stand beside them.
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Valencia Robinson of AIDS Action Missippi came to Columbia to let the South Carolinians know, "you are not alone." |
"We had to let them know they are not alone," said Jessica Mardis of AIDS Action In Mississippi (AAIM). "We're all in this together. This could have been me or any one of us. It is my duty as a human being to stand up and say this is not right."
In a soft voice, Miriam Cassanova, who has been HIV-positive since 1994, said it meant a lot for her to be here all the way from New York City. "You could feel all the people's pain. I know a lot of people don't understand their pain; maybe you need to be in their shoes. I hope they get results. They need to live how we do," she said.
Karen Bates said, "I have been very touched by the outpouring of support the people living with HIV/AIDS in South Carolina have received from people from Florida, Maryland, Mississippi, DC, New York, Texas and South Africa.
In a prayer, Doug Lewis, retired Methodist Minister from West Columbia, South Carolina, said, "We thank everyone coming from elsewhere to join us in our weakness and our strength. May we all go in peace."
WANT TO GET INVOLVED?
Contact Karen Bates at scaplwa@aol.com.