An HIV/AIDS treatment advocate's blog

March 07, 2007 ~ I'm totally brain fried

Wed, 07 Mar 2007 16:25:10 GMT

Hello again ~

It’s been a while since my last post. Last week I was at the 2007 14^th Conference on Retroviruses and Opportunistic Infections in Los Angeles, CA.

This conference is a science-focused meeting of the world's leading researchers who work to understand, prevent, and treat HIV/AIDS and its complications. In short, CROI is the place where people report on anything big happening in the HIV/AIDS science world. CROI is a huge mental workout because it is geared for scientists, not the average person like you or me. Thus, nothing is easy to understand. They speak in science like, “The influence of single nucleotide polymorphisms (SNP) of the fractalkine (CX3CL1) gene, the natural ligand of the CX3CR1 HIV-1 coreceptor, and of the CCR2 chemokine receptor and CCL2 on the natural history of HIV-1 infection are not known of inconsistent, respectively.” Now don’t get me wrong, I was a science geek in school, but imagine having to take 7 hours of science for four days straight. It was a brain fry to say the least.

Keeping on top of the science, the following are some links to some of what was reported from the conference (compiled by Jules Levin of NATAP):

CD4 Counts Predict Non-AIDS Disease Risk in FIRST Trial - written by Mark Mascolini (02/26/07)

Therapies for Improved Lipids, Belly Fat, and Limb Fat (02/26/07)

Also….. check out my interview with Steve Felstead, Pfizer VP, about Maraviroc the first-in-class CCR5 inhibitor. http://video.google.com/videoplay?docid=-2101100643582810605&pr=goog-sl&hl=en.

Jan. 05, 2007 ~ Greed, bastards & the Alamo

Fri, 05 Jan 2007 23:00:40 GMT

Hello again ~

If you haven’t done so already, please read the January 3 article “Inside Abbott's tactics to protect AIDS drug” published in the Wall Street Journal and available online at http://post-gazette.com/pg/07003/750966-28.stm … Thank you, John Carreyrou, for telling the Abbott-Norvir story to the world. Also see related story Poz.com story "WSJ Uncovers Abbott's Norvir-Busting Marketing Strategies" http://www.poz.com/articles/761_11084.shtml.

Yes, in the HIV/AIDS activists’ realm, we refer to Abbott as “the greedy, dirty bastards.” My center (The Center for AIDS Information & Advocacy) vehemently decried their evils and helped lead the boycott against Abbott alongside many other prominent activists in the AIDS Treatment Activists Coalition (ATAC) http://www.emediawire.com/releases/2004/7/emw142638.htm. Our center dropped its boycott of Abbott in December 2005 because of the postitive strides Abbott has made in the Houston community.

Carreyrou wrote, “Over time, the outcry faded . . ” I am here to bear witness that in the HIV/AIDS activists’ realm, the Novir pricing issue has faded as much as Japan’s attack on Pearl Harbor has ~ meaning, of course, it hasn’t and never will!

In fact, we advocates are still at each other’s throats over the issue. Basically, there are two hunkered-down camps: the “don’t ever talk to those dirty bastards” group verses the “they’ve made strides, so let’s start the mend” group. Either way, the bigger issue remains that the Norvir price increase, and subsequent monopoly on the “boosting” market, proved(s) how low a company would stoop to make money.

Here’s our new Texas war cry: REMEMBER THE ALAMO; REMEMBER NORVIR!!!

Those greedy bastards!

Dec 13, 2006 ~ The ones to watch

Wed, 13 Dec 2006 16:42:04 GMT

I loved, loved, loved Poz Magazine's 35 Ones-to-Watch list (http://www.poz.com/articles/1891_10868.shtml).

Yes, grassroots activists Julie David’s and Gregg Gonsalves have taken HIV advocacy to a higher realm ~ heck, they’ve rewritten the how-to manual. We follow in their dust.

I’m also pleased to see “Southern spitfire” Joyce Turner-Keller and Phill Wilson included. Charisma is thy name. I just can’t wait to hear what they do and say next.

I would have liked to seen more Southern grassroots spitfires such as: Tom Gegeny, former editor of RITA! (Research Initiative Treatment ACTION!); Judith Dillard, activist and peer educator; and Karen Bates, co-chair of South Carolina Campaign to End AIDS.

Lastly, next year’s list should most definitely include the Ms. Lynda Dee, director of AIDS Action Baltimore. She is a mover of mountains and shaker of people. When she talks, people listen ~ they have to because her unabashed opinions will not be stifled ~ oh, hell no!

Dec 11, 2006 ~ You know this...so why do I have to say it?

Mon, 11 Dec 2006 19:13:42 GMT

I totally get that any “HIV is a gay disease” campaign seeks to empower the gay community and to call people into action. There is nothing wrong with taking ownership of issues in our communities to spur action. However, I fear that directing this particular message to the gay community sends the dangerous message that if you are not in and of that community, you are in the clear. We have made so many strides since the 1980s in getting the word out that HIV/AIDS is a huge issue that goes beyond the borders of the gay community. It would be a shame to see any step backwards. While true, HIV/AIDS is a gay disease, it is also a black disease, a Hispanic disease, a woman/man disease, and so on. Bottom line, it’s an equal-opportunity human disease. So let’s not leave anyone out of that message.

Nov. 30, 2006 ~ No gun pointing here!

Thu, 30 Nov 2006 21:52:02 GMT

Hello again ~ Tomorrow, December 1, is Worlds AIDS Day. If you’ve been living under a rock since 1988, you many not know this.

Now you would think that I would gung-ho about it and want to write inspiring words as to why we should all join hands and come together during this day of remembrance. Nope ~ not this chic, not on this blog. You see, I despise that this day has become a “We are the World” kind of moment where people light candles and sing songs in remembrance of a relative or a friend who died of AIDS.

Don’t get me wrong ~ I support people who do this and I certainly support rich celebrities who publicize AIDS, especially AIDS in Sub Saharan Africa, one of the hardest hit areas. But what I am saying is that we should turn World AIDS Day into World AIDS ACTION Day. Really! Wouldn’t it be great if in addition to attending a church service, lighting a candle, walking in a vigil if people time out to talk to call or write his or her state and national legislators to demand more funding for AIDS research, testing and treatment. Wouldn’t it be great if all of our leaders got inundated with calls and emails? How great would that be?

How much clearer can I (we activists) make it! Every year, the number of people being infected INCREASE…get bigger…become larger…I don’t know how many more ways to say it!!! Women, especially women of color, are increasingly being infected. So for me World AIDS Day is a reminder of these pitiful facts and personally I am saddened and embarrassed ~ aren’t you?

People ask me what they can do, well, here is a list:

Get educated about HIV and other sexually-transmitted diseases.
Educate your friends and have them spread the word.
Get tested and know your status.
Once you know your status (either negative or positive) ~ protect yourself and others by using a condom (or abstaining ~ not the A word!), or by using clean needles (or getting off of drugs all together).

That’s it. 4 things. Yes, we can shout it to the rooftops ~ and have been. But while these “how not to get HIV” tips do work, no one can’t dictate to others how to live their lives. No one can be the “condom” or the “no sex, no drugs” police. No on can point a gun to people and tell people to only do things that are good (but don’t feel good) for them like wearing a helmet when riding a motorcycle, putting on a seat belt, eating right and so on. It doesn’t work like that. People are human. We make our own choices based upon many, many factors and variables. And I’ll admit. I’ve done risky things, and will unfortunately continue to do risky things. So then the question becomes: how far I am willing to go to risk my health or wellness? Bottom line, like it or not, to solve our issues, we need to take personal responsibility. And we need to be accountable for our own actions…PERIOD. I am not saying that is good or bad, it’s just a fact of life.

So here is the deal. If you want to see change, look at the person in the mirror and start there. If you want more change, start the person next door and work from there. If you truly want more change, get a blog, write a letter to an editor, attend a meeting…just do something, anything. Of course I can't point a gun to your head, can I?

Nov 29, 2006 ~ Cookie-dough blasts

Wed, 29 Nov 2006 17:03:14 GMT

Hello again ~ today is my birthday. In years past, days prior to my birthday I would enter into a funk of semi depression that would hasten frequent trips to Sonic for cookie-dough blasts. (For those unfamiliar with Sonic or the sweet ecstasy that is the blast, please visit http://www.sonicdrivein.com/index.jsp.)

But no depression this year. Nope. Why? Well, three months ago, out of blue, I sat up in bed one morning after a restful night’s sleep and proclaimed, “I am old enough to know I am right about what I think.” Now, this may sound vague, but it just means that I have reached that age where I don’t say, “I’ll listen to so-and-so because they’ve lived longer and know what’s right” or “I’m too young ~ what do I know.” Not anymore. My revelation was that I HAVE FINALLY LIVED LONG ENOUGH TO KNOW WHAT’S RIGHT. I think I can call this a coming of age. I am becoming comfortable in my skin, kind of like what happened when I became a junior in high school. I wasn’t the new kid anymore. Well, it's the same in real life. I am not a newbie anymore. Everything I experience now just seems a little more sharper. Yeah, buddy, I know the ropes. I know the pitfalls. I know the consequences. And I know there is no turning back if I make a mistake and screw things up.

I also realize I’ve got to wholly prepare my son, who is heading off to college in June. I’ve got to ensure he has the skills to survive out on his own going into the cold, brutal world… like teaching him about driving at night, ATMs, walking downtown, pick-pockets, watching the puc during hockey games, exchange rates, Mexican border towns during spring break, checking for ticks after a camping trip, German tourists, clean underwear… (%*$&#...panic, panic, breath, breath, calm, calm)….. ~ I definitely feel a blast coming on.

Nov 21, 2006 ~ no sugar coating here...

Tue, 21 Nov 2006 04:57:27 GMT

Hello again ~ I was in an advocates' meeting a few weeks ago when I heard a sentence that ticked me off big time.

“We need to make advocacy cool, hip and sexy as to attract a new generation of activists,” someone said.

When I heard this, I picked up my head from my laptop and flung my head in the direction of the speaker and thought ….EXCUSE ME???? Now, don’t get me wrong, I am the original “cool, hip and sexy…” but I thought this statement was total BS! Advocacy is hard, grueling, intellectual work. Let’s not pussyfoot around, don’t sugar coat it. If you don’t have the right stuff, you don’t have any business doing this work. There is too much at stake.

In my first year of journalism school, one professor said the first day of class, “if you are in this profession for the money, you are in the wrong place ~ go to law school.”

Well, I feel the same way about social-service and advocacy work, if you are in this to be hip, cool and sexy, you are in the wrong business. You do this work because you love it, because you’ve got the brain for it, because you've got the passion and because you believe in it and you want to work very hard to make meaningful changes. Period. If that’s not you, go do something else.

Nov 20, 2006 ~ Indian shoes

Tue, 21 Nov 2006 04:24:31 GMT

Hello again ~ do you remember that scene in The Matrix where Neo answers the door looking poop tired and pale white having worked on is PC day and night combing virtual land for any information about Trinity and the matrix? And that one guy says something like, “man, why don’t you come out with us? You need to unplug.” And then Neo doesn’t want to, but he does because he sees the white rabbit that he is supposed to follow.

Ok, so I can’t recite a storyline to save my life, but the whole jist of the scene was that he looked liked crap and he needed to get away from his PC. Well, that was me. I seriously really needed to get the heck away from my PC, from my laptop, from my Sidekick 3, from my five phone numbers, from my five email addresses, from any IMing ~ I totally needed to unplug from the whole world. So I did.

Not out of any grand design I ended up in a little town two hours west of San Antonio, Texas. It was not my idea to spend the rest of my vacation days in a place with three feed stores and no fast food restaurants. But I jumped at the chance because I truly needed to get away from the big city daily grind and from advocacy work.

So for five days and four nights I lived in a 20-some odd-foot travel trailer… and boy was it nice. My nights were spent watching stars, catching up on the latest James Patterson novel and getting some much-needed rest. My days were spent sitting under small shade trees in the Texas hill country brush. I could see miles across the curved landscape and not hearing anything but a few buzzing bees and the occasional wild deer with its hooves clanging on the foothill rocks. It was gorgeous.

And yes, I had lots of time to think. I first thought about the pioneers who I knew crossed this land ~ I was sitting on the damn trail. Man, it must have been tough. Then I thought about the American Indians, my ancestors. How did they hunt with no shoes? I'm sure they had shoes. But what kind? What were they made of? Weird thing to think about ~ shoes.

Then I thought that people could solve the world’s problems just sitting in such a peaceful place. How did the world get so complicated? How did we get from Indians making shoes to instant messaging, Internets and Sidekick 3s ~ what happened? I spent another couple of hours trying to solve some of my own problems ~ and this was the place to do it, right? But I have to be honest, I couldn’t think without my laptop and my wireless connection. And I really wanted to scour the Internet to find out about Indian shoes. How sad is that?

Oct. 17, 2006 ~ Quilts, The Munsters & cowboy hats

Tue, 17 Oct 2006 23:46:54 GMT

Hello again ~

The US Conference on AIDS (USCA) was a huge emotional drain. There were so many great motivating speakers addressing attendees with the Names Project AIDS Memorial Quilt panels as backdrops. There was a black cowboy hat memorializing one man from Houston, my hometown. I stared at it for a long while. And then my mind started to wander.

I thought about my grandmother who died a few years ago. She would spend her summers taking care of my brother and me when we were young in the late 1970s. I hated her being there because she was so strict and religious. She would not even let us watch Archie Bunker or the Munsters on TV. "Evil" she would say. She spoke very little English but she knew the word "evil" and knew it pertained specifically to the Munsters. What the hell? Each time I mentioned the Munsters, she made me say a rosary. And believe me, I did it because somehow she knew when I recited a fake rosary. She would shake her head knowing I had lied about saying it and then would assign me 10 "real" rosaries. And for extra pennance, I recall her escorting us to church for confession because we obviously racked up a whole host of sins.

I thought of her because she would pass the time by making quilts. I sensed she was always in a hurry, too, like she was on a strict deadline. She made one after another after another after another. Why? I thought...what a waste of time! Being young and restless, I just wanted to go the park, roller skating, the movies or the zoo or all four. But she just wanted to sew like she was on a mission. Why? I really didn't care because it was boring, B-O-R-I-N-G. To get me interested, or at least to stop my nagging, she taught me how to sew and make quilts, too. I didn't quite care for those things either, but I did it because it was less boring than saying back-to-back rosaries.

How stupid was I? I now know her life was especially difficult because she couldn't read, write or speak English. I don't think she even made it past the fifth grade. On my grandfather's tile layer's wage, she managed to raise seven children and keep a tidy, blooming garden in one of the city's worst neighborhoods. I never thought of her as a creative woman, but she must have been because from somewhere in the back of her mind, she came up with these amazing quilt designs. And these designs came to life with leftover, unsold (really unwanted) pieces of fabric she scrounged for from the fabric store's remnant bin. Where did she learn this? She didn't read about it. And certainly she didn't strategize with the "white" ladies at the fabric store on how to make her quilts.

Today, decades later, I know better. She did not speak very much to me, but her actions now speak volumes. With very little left from a 92-year life ~ a few photos, a few pieces of jewelry ~ those quilts help mark her life and her time with us. I am grateful we have them. When we use these quilts every winter, I think about how driven she was in making them ~ possessed actually. I now believe she just wanted us to have a piece of her hand-made love to remember her by.

So during the plenary sessions at USCA, I thought about my grandma and all of the people memorialized on the folds of fabric. I also thought about who might have quilted the quilts. What did they think about when they designed them? What were they thinking about while working on them? How long did it take to make them? Then I thought, how the hell can one person's life be summed up on a quilt? It's so final. Each stitch connects to the next, then the next, then the next until the it's done. Then, what next? What do people do when they are done? Is that it? Is that a fitting end to someone's life? Are we wll expected to sit back quietly making quilts? Don't get me wrong, I am all for quilting and summing up one person's life on a 6-by-6 foot stretch of fabric (like that's truly possible), but once your done, what's left? Should we just be contented to just sit and admire it? And when someone dies of diabetes, HIV-related conditions, breast cancer, or a drunk driver, or anything else for that matter, do we just end it all with a quilt? I mean, don't we owe it to our loved ones to do more? Something? Anything? Because we can, you know. No one tells us we can, but we can. We should. Think about it. How many more damn quilts will it take before we realize that there is something seriously wrong with the whole damn situation? Don't we owe it to our lost loved ones to speak out and advocate for change to help others ~ to prevent them from being taken away by these things?

I did not realize how emotional I was at USCA until I broke down crying after lunch one afternoon in the lobby of the Westin Diplomat writing an email to a friend whose daughter was in the hospital with a very critical illness. "I feel like this is all a big test," he wrote. In the hopelessness of his words, and thinking about quilts and stitches and summing up a person's life and loss and sewing machines and grandma and friends long gone and cowboy hats, I lost it.

The worst thing in the world is seeing illness overtake a loved one. It's heart wrenching. It's numbing. We pray and wonder why we are not the ones burdened with our loved one's pain or illness. We would willingly accept it upon ourselves just to spare them. Anything but them, we plead. It's unbearable torture to be in the endless horribleness of it all. It makes us raw and old before our time. And we get so fist-clenching angry that we want to wrap our hands around the situation as if it were a half-full balloon. We want to squeeze it tightly until it busts out of existence.

My friend's written words conveyed overwhelming fear, anger and dire hopelessness. All of these things loiter deep inside and seek to destroy us. And for some, it does. But in my friend's virtual cry for help, he really needed us (his best friends) to hear where he was at now ~ this horrible place. He was sinking by the day. We all know this place. We've all been there time and time again. We hate it! We never want to go back, but we do. It finds us -- it's never our choice, it just finds us.

When the drawn-out nightmare is over, after our loved ones have left us, there are pieces needing to be picked up. There are scraps of fabric to be rummaged for and bought. There are quilts to be made by half-empty, tired, colorless-grey looking people. And there are panels to be hung at USCA plenary sessions.

September 22, 2006 ~ good news

Fri, 22 Sep 2006 20:41:29 GMT

Opps, I forgot ~ Today's big story: The U.S. Centers for Disease Control and Prevention (CDC) recommends routine HIV testing is for all U.S. residents between 13 and 64 years of age.

CDC press release: http://www.cdc.gov/od/oc/media/pressrel/r060921.htm

This is good news, but this should have happened 20 years ago.