Sunday, September 30, 2012

Twenty-Five Years

On my birthday this year, at the AIDS International Conference in Washington D.C., there was a press release saying that two more patients treated early with antiretrovirals, they had been cured.  Cured.  Of HIV/AIDS.  Incredible.

Of course it wasn't phrased like that.  What it said (and you can see for yourself here: ) was that two French adults who had been treated with the antiretrovirals until their viral load of HIV was in the "negative" range, and who then stopped taking the meds, their tested HIV cells remained in the "negative" range for six years so far.  But it was released as you can see under the banner of the "HIV Cure" initiative, and it was for these folks as much of a cure as any cancer patient gets--that is, an indefinite remission.  Without the sometimes--physically-brutal and always-mind-consuming duty of taking daily antiretrovirals.  

The key was to catch the infection early, when the relative viral load was lighter, and there weren't yet secondary medical conditions.  Which is why everyone who has any risk at all of contacting the virus is advised to be tested every six months.  That test is not a death sentence.  It is your chance for a long life.

Imagine if we said this about cancer:  Get a blood test every six months, and if we find anything we can  "cure" it.  The line would be out the door.  But HIV/AIDS isn't like cancer.  It never has been.

Twenty-five years ago the AIDS Memorial Quilt began, started by Cleve Jones in San Francisco as a way to memorialize and personalize rather than demonize those who had died of AIDS.  It hasn't been possible to display the whole quilt for years given how large it's grown, but they did it this year in Washington, all 1.4 million square feet of it.  I put my name in and this is the first of many "Lisa's" on the quilt, a five year old girl.  This fits in a way, since I was a foster parent during those years when it was almost an obsession within foster parent groups about whether to take in HIV-positive children, often requiring care because their mothers had died or were disabled.  It often came down to the "toothbrush" issue--what if another child in the home picked up and used their toothbrush?  But the real issue was:  could you watch a child die in your home?  Because there were grueling chemo regimines, but there was no cure.  Everyone died.

I had my first child the year the Quilt was first displayed, and I remember thinking that I had brought her into a scarier world than the one I'd been born into.  I had my second child the year that "Lisa" above died.  Our third and fourth kids were born in 1990, and contrary to what I expected, all four have grown up in a world where they've been told to have "Safe Sex" but otherwise not to worry nearly as much as I supposed they would have to.  There are treatments now.  There are possible cures.  We are an optimistic land.  We think we've turned the bend.

But more than a million Americans have contracted HIV/AIDS, and more than half of them have died; and the global totals are far higher.  The tragedy of it is epic, and hard to convey.  The quilt tries.  So do authors. This week I read Tell the Wolves I'm Home  by Carol Rifka Brunt and I loved it.  It's told in the first-person, a 14-year-old girl named June whose beloved uncle is dying of AIDS.  It takes place 25 years ago, in 1987, with all the cultural references to that time that those of us who were teenagers or adults will remember, and the hopelessness of those with AIDS and their loved ones.  A treatment was said to be six months away.  It's not in time for her uncle Finn, or his partner Toby, who is kept in the shadows by Finn so he can continue to have a relationship with his family until the end.  Toby only comes to June in desperation, for comfort, and for company after Finn dies, and their friendship becomes the odd and funny core of the book.  She has to see him in secret.  It's sad, and it's uplifting, and it's an amazing book.    It made me miss love and miss Finn too, an artist who was full of life and talent and good humor and grace and forgiveness and love.  And long as June lives, she'll never really get over it.  That's what tragedies are.


  1. Cleve Jones created the quilt to honor Marvin Feldman. Marvin's mother was a teacher and principal in the Pawtucket, RI school system and one of the most wonderful and inspiring women I ever had the privilege of knowing.

  2. Then I guess in some ways Marvin was a lucky man.