Lighting a Candle

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The sun was setting beyond the fields and the lake into the Everglades as the sparse gathering came together at the community college cultural center last week.

In all about two dozen people came to commemorate the 27 years of loss, misery and hard work the AIDS epidemic brought to the far western edges of Palm Beach County.

The turnout wasn’t big enough to dot more than three rows of seats, but it wasn’t small enough to dampen the ceremony that organizers have built into their tradition over the last two decades.

Belle Glade Mayor Steve Wilson with the help of the luminous “Little Miss Destiny Stewart,” daughter of longtime organizer Sandra Daniels Stewart led the pledge, and speakers delivered welcomes in English, Spanish and Haitian Kreyol.

The elder Stewart has been with ACOTGI – the AIDS Coalition Of The Glades, Inc., since the start, when nurses, church members, and others in the mid ‘80s started joining forces against the epidemic that was sweeping the nation, and yet somehow said to be singling out their town for shame and loss.

Together, they have always come through when money was needed to help a local patient make rent, or food to take with medicine.

“Our theme this year is your life is worth saving, and it truly is,” Sandra Chamblee, longtime Glades resident, grandmother, hospital board member, volunteer, and since 1998, when she took her first paying work, director of the Glades Heallth Initiative, said in the English verson.

This is a close knit town, and when at the end, Stewart named some of the members of their little army that were gone, only the children didn’t remember the famous Dr. Deanna James, who worked at the Health Department clinic, and who told a congressional committee that if things didn’t change, black people would soon become extinct in the Glades.

“She passed away just before you were born,” a woman told her daughter. “Your father went to her service.”

A medical technician, she had worked with Dr. James six months before the doctor transferred to West Palm. “You know how some doctors clock in and clock out, and go back to where they came from and forget about you? She wasn’t like that.”

Someone had donated red plastic cups with holes in the bottom to hold candles for the walk from the campus to the city’s downtown, and Stewart asked everyone to remember to give them back at the end.

The sheriff’s office was charging $250 this year for the cars and deputies to escort the walkers along the mile and a half in the dark along one of the town’s two highways, so the organizers had wheedled the money out of friends and supporters at the last minute. They said they understood the sheriff’s office was hit with hard times just like everyone else in this year that had seen the $700 billion bankers bailout.

World AIDS Day 2008 is Time to Own the Epidemic

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First it was urban gay men meeting in living rooms, joining forces to fight the epidemic that would be called AIDS. Then nurses and church-goers giving comfort to the dying in rural Belle Glade, doctors and scientists taking their expertise to forgotten nations around the world, donor nations and philanthropists’ foundations and sending food, medicine and a plan to try to make up for lost time, and still it is not enough.

From medical journals and international global health conferences to a lunch today in a Belle Glade church, those who know the epidemic best come to the same conclusion: we are not winning this battle.

The efforts of some will never be enough until everyone who knows of the AIDS epidemic recognizes it as ours, because the inequities that have fed the epidemic are ours as well. When that recognition comes, universal health care, comprehensive sex education, laws protecting decent affordable housing and the abolition of discriminatory laws — such as three just passed barring same sex marriages in Arizona, California and Florida — will follow.

So for those who want to know more, do more, change more, here is a start.

Colonialism and plagues still linked

This is an important perspective on AIDS and indigenous people.

And another friend writes

From CHAMP, Health GAP & the Organizers of the 100 Days to Fight AIDS March, looking for support:

Today, 1,000 AIDS activists are gathering in Washington, DC to “inaugurate” President-elect Obama as the president who can change the way the US fights AIDS. We will be marching to the White House and Transition Team offices with this message. We know that many of you cannot make it to DC for the rally, but that doesn’t mean you can’t take ACTION! Our 100 Days to Fight AIDS Coalition NEEDS YOUR HELP to get our message out to the President-Elect and his Transition Team (the people who are deciding now what President Obama’s priorities will be).

Can you take one minute to make this call today, and help reinforce the message that 1,000 people are bringing directly to the transition team? The phone number, and a call-in script, is below.

Transition Team

Phone #: 202 – 540 – 3000

After instructions, press “2” to speak with staff.

Then, just follow the script below:

“Hi, my name is _________. “I want to let my new president and his transition team know that i fully support the visionary commitments he laid out during his campaign, including guaranteeing universal access to HIV treatment in the US and around the world and reforming US prevention policies at home and abroad. I’m especially supportive of Obama announcing his plan to fulfill these important commitments during his 1st 100 days in office. Between 1:00 and 2:45 PM today, 1,000 supporters will gather outside the White House and at the Transition Team offices to support President Obama’s commitments, and we hope you can join us.”

More information on the action and our demands can be found here

A survivor tells story of hope and struggle

A friend sent this link, a reminder that survival in this epidemic does not come easy, in the story about the last living of the 53 HIV-positive extras in the 1993 movie Philadephia.

Cured can be a cruel word

When it’s not certain — no matter to whom the word is attributed.

News outlets could have done better than to use the word “cured” in headlines to describe the condition of an HIV positive man who showed no signs of the virus after a bone marrow transplant.

For one thing it was premature.

For another if it is a cure, sadly in this case it could be one that is worse — and more dangerous now — than the illness.

It gets the hopes of desperate people up, and the slows motivation to address the factors driving the epidemic.

Science reporting, which this should have been, should be based on evidence, not hype.

Read views of what this announcement meant here

And this is what I mean

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When I say we can do better than we have, at home and abroad, in tackling this brutal epidemic by including things we should have done a long time ago in our strategy:

That is what has been highlighted, with dramatic emphasis by Sen. Edward M. Kennedy, who, if he hadn’t already, sealed yesterday his claim in history as the most important, influential, and redemptive sons of the late Joseph Kennedy Sr.

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The 76-year-old lion of the Senate did this by returning to the senate, using his father’s old cane for support, to continue his work for universal health coverage.

To him, this was enough of a priority to spend his last days among us pursuing it. If we had universal health coverage a quarter century ago, it is unlikely we would be home to more HIV/AIDS patients than any country in the developed world. Wen didn’t, and we are. Universal health coverage should be our priority too.