Disposable Children Assist Big Pharma?

In the mid-1980s, when AIDS was a new and very hot topic, lots of people wrote about it. One unlikely source of high-quality information was SPIN magazine. Believe it or not, SPIN started out as a vibrantly independent music rag that wasn't slave to the industry. Bob Guccione, Jr. did a good job with it and it was a delightful replacement for the rapidly decaying Rolling Stone. For a while, SPIN had a column called: AIDS: News from the Front. In each issue there was an excellent, information-packed article about some portion of the issue.

The articles stopped around the time that the politics of AIDS got ugly, back when things got shady regarding the allegation that HIV caused AIDS. Lies were told. Numbers were tweaked. Money changed hands and directions. This was public knowledge in real time and then it simply disappeared. I was in my twenties at the time and it was my first adult experience of witnessing how things can happen and then just go away. It was terrifying. I felt a strong rush of denial. There was, to my mind, no way that things could get twisted. Doublethink was from a book. It couldn't really happen.

But it did.

Over the next several years the same maneuvering slowly forced the "fact" that HIV and AIDS were inextricably linked, that HIV caused AIDS. Ultimately, at an international conference, the requirements for the diagnosis were officially changed such that if a patient did not have HIV, was not HIV positive (not just anti-body positive), then s/he could not be diagnosed with AIDS. Boom. They didn't have it. No matter that there were no studies proving the connection. No matter that, at the time, as many as 50% of patients currently diagnosed with AIDS did not test positive for HIV. Suddenly, they didn't have AIDS.

My disbelief and fear were tempered by my involvement in my own life and a feeling of powerlessness. I remember feeling digust when Dr. Robert Gallo walked away looking like a hero while Dr. Peter Duesberg got played like a chump. I thought, "If this guy, who is so fricking smart and has such an amazing research track record, can be stifled, what chance have I got?" Yeah. Defeatist. But I can't really blame myself. When we first get a glimpse of how much power is wielded by people with money and an agenda it's daunting. Who wants to believe it? I don't have inborn conspiracy theorist tendencies. It feels unnatural to think that anyone could make such deadly decisions, with knowledge of the kinds of consequences that will arise from the choice.

One more anecdote: when I was a new graduate from massage school, I donated some of my appointments each month to a local organization for gay men living with AIDS. One of the most telling symptoms was the change in the quality and texture of muscle tissue. The wasting rendered the tissue the texture of applsauce and cottage cheese bound in cheesecloth. I sobbed after my first session. Then, I went back to my massage school and met with the MD and the Pathology teacher, seeking reassurance and a validation of my treatment plan. They were incredibly helpful and supportive and they told me something that shocked me. They said that the texture I described was not a result of AIDS; it was caused by AZT. I can remember the moment like it was ten minutes ago rather than more than ten years ago.

So, now to the present. Wolf and I are fans of www.sure.org, a web randomizer that loads a different page every time you select it. I mean, how else will you find helpful products like the Cartoon Sheep Type Eight Spray-waterfall Twin Tub Washing Machine? (The "Minus Hydronium Water" is a winner, too. Be sure you take a look.) But back to the topic at hand...

Recently Wolf came across The Alberta Reappraising AIDS Society's website and landed on a page with an enormously disturbing article about pediatric AIDS drug trials in the U.S. Now, to be sure, I know nothing about this organization, it's politics, or its accuracy, but if the article is accurate, it's terrifying and warrants immediate action by anyone will take the time. The basic idea is that children who are wards of the State of New York are being used as guinea pigs for testing AIDS drugs. The kids don't necessarily have AIDS, the tests do not follow good clinical guidelines, the drugs are toxic. The kids have no option to not participate.

Initially, I thought, "This must be an urban legend." So, we went to Snopes to have our minds relieved. They had nothing on it. We looked at the FDA website and found more unsettling information about pediatric AIDS drug trials. I'm sorry I don't have the link to post, but I'm rushing and packing to catch a plane. However, the FDA site is easy to search, so please do spend a few minutes there looking.

Then, she found similar stories about testing in Cape Town, South Africa. In that case, the children are not wards of the state but their families are not being provided with clear information and often don't know that they are signing releases to have their children participate. In both cases, the children being used are poor and without strong advocates. This is not being done to children in middle class, two-parent homes. It's being done to the children that few people know or care about beyond an abstract sense of sadness that some people suffer from poverty, even in this wealthy nation.

The author of the article quoted on the Alberta site was Liam Scheff. His email address is liamscheff@hotmail.com (sorry, I don't know the HTML that makes your email client pop up and fills in the To: addy) He published three articles in one of Boston's independent newspapers, Weekly Dig. Here are the links:

The AIDS Debate: The Most Controversial Story You've Never Heard

The AIDS Debate Part 2

Africa: Treating Poverty with Toxic Drugs

We're also contacting our state and federal senators' and representatives' offices to try to find out for sure what is and is not true about the tales of pediatric AIDS trials. I can tell you, though, that nothing on the FDA website made it seem like the story of poor children being used as lab rats was impossible, or even particularly far-fetched. It is only for that reason that I am posting this here. When I know more, I'll post an update. In the meantime, I'll pray two prayers: that this is not true, or that it can be brought to an end swiftly.

Morgan

Copyright 2004 Seasmoke All rights Reserved

Finneran Begin Again

I live in Massachusetts. As you may know, our Commonwealth is grappling with the issue of same-sex marriage in a vital way right now. I have a lot of thoughts and feelings about it and want to share a few here:

1. Last year, seven couples sued the state for the right to marry. It went to the Supreme Judicial Court (SJC). For those who don't know this, it is the highest possible court. No court can overturn its rulings. It's the end of the line.

After a prolonged deliberation process, the SJC ruled that to deny marriage rights on the basis of sex is unconstitutional. Further, they gave the cities and towns six months to get their forms and processes together. Starting in May, queer folk can be legally married. It's breath-taking.


2. Equally breath-taking is witnessing the public discourse. See, our legislature is deciding whether or not to convene a constitutional convention to submit amendments that will make the SJC's ruling moot. (So much for checks and balances.) The inspirational bit starts there. In order to amend the state constitution there is a large and formal process that must be followed before the ultimate votes are cast. Included are a number of hearings and votes regarding everything from whether or not to float and amendment to how many versions to content. It's ponderous. And that's a good thing.

This process forces people to slow down. It acts, in part, as a filter to help the participants move through (and past) their emotions so that they can get to the business of thoughtful consideration. The most recent round showed people on both sides of the issue working incredibly hard and with great sincerity. Ears listened, minds opened, positions shifted. To watch these men and women striving so genuinely was to see the tremendous art and beauty of Humanity. It went beyond partisan politics. Heck, my Republican Senator voted against bigotry and my Democratic Representative voted for it.

The "good guys" won by narrow margins, but they won. Just like they won last year when the Super D.O.M.A. bill was defeated. Anyone old enough to remember Stonewall can attest to the tremendous acts of courage and conscience required to get us to this point. It is increasingly difficult to hide in denial and ambiguity regarding discrimination based upon sex, gender, sexuality. People may still feel the feelings, but they sense that the days of acceptable imposition of them are waning. At the very least folks now have to consider their audience before speaking. Progress is measured in millimeters in real time.


3. I used to feel like "Domestic Partnership" was enough. Now I don't. My discontent with that title arrived suddenly, while sitting in my car and listening to a review of the arguments being used in the court case last year. Once I got that the logical argument comes down to chromosomes, it was done. There is no defensible argument in favor of discrimination based upon sexual orientation. Ah, but the emotional arguments... In that twilight arena reason rarely stands a chance. So, I think that the only solution is to focus on the mundane, the specific. Nothing derails a rant about the threat to heterosexual marriages like asking what that means, precisely. Ask for examples. Diagrams are a plus. I've asked a number of times and have yet to receive an answer to the question. I either experience the cricket effect or the rant continues as though I'd not asked the question.

That being the case, the absurdity of granting parallel rights, responsibilities, and privileges but under a different name becomes apparent. It's an effort to appease the irrational emotions, a sacrifice to the erupting volcano god. It's pointless. Separate But Equal is doomed to fail. It embeds prejudice. It subverts the fairness of its founding lip service.

If it's marriage, call it marriage. Marriage is a secular office, not a religious prerogative. Churches and synagogues don't grant marriage licenses, nor do they own the institution; they have no power to modify the content of the legal state of marriage. We confuse ourselves when we think their official opinions relevant to civil decision-making.

I don't want to domestic partner my girlfriend; I want to marry her.


4. Banning same-sex marriage is an expensive proposition, too. If domestic partnership is approved, it will require separate documents and processes to be prepared and people to maintain them; additional ink, toner, and other printing materials; every piece of paper associated with every one of the 1000+ legal protections and rights of marriage will have to be modified and/or duplicated. Computer databases will need fields added to their data entry forms and/or modifications to their value lists.

If no legal office is implemented, then there's the gnarly question of taxes. See, I'm pretty sure that it could convincingly argued that people who are not being afforded the rights of full citizenship should not be paying full citizenship taxes. That being the case, 10% of the population will be due a handsome refund. I hope that the IRS's check-writing machines have plenty of ink.


5. Wil Wheaton has a worthy at blog. Today, he wrote about this subject and did a great job. Not even "a great job for a straight guy". Just, straight up, a great job. Margaret Cho would be proud. It's worth the read and even does the remarkable job of making me nod my head and agree with Andrew Sullivan about something. Some would say that the latter would be impossible unless a full solar eclipse occurred at Elvis' "come-back" concert performed on the back of a live blue whale on the Mongolian steppes. (Of course, those are folks with imaginations nearly as eclectic as my own so I have a soft spot for their hyperbole.)


In conclusion...

I seem to recall school lessons about a scuffle on American soil over the rights of self-determination. I want to say that there were a couple of Georges involved and that one of them, despite a bad history with cherry trees, went on to a role of some importance. Later, there was another local dustup that was based, in part, on the idea that competent adults are entitled to equal status in the eyes of the government. Of course, it took some time to really roll that out and full citizenship, voting rights, etc., took a while to get ironed out.

In my own lifetime, issues of insitutionalized bigotry have been on the table. My parents were involved in block-busting activism in the 1960s. For those who don't recall those days, this was a way of undermining racism-by-real estate. A non-white couple who were told that a house they wanted to buy was no longer available would contact the organization with which my parents were affiliated and then a white person would go to view the same house. If, as was often the case, the house was "available" for them, there was a quick and efficient court action to put things to rights. It was a small thing, but it had an impact in our community and went a long way toward shaping my ideas about what being a member of a community means.

If the state legislature or our President manage to define me as a less-than-full citizen, there will be no way to categorize that other than bigoted and hostile. One-in-ten is still the working statistic for gay/lesbian/bi-sexual/transgender/transsexual orientation. It's hard to believe that any politician would be willing to declare 10% of the population as subhuman, but then again, it's hard to believe that President Bush was able to convince anyone that there was a direct connection between the September 11th attacks and Saddam Hussein. So, while I believe that the right of same-sex couples to marry is an inevitability, I'm bright enough to know that things can go quite horribly wrong in the meantime.

Maybe I should practice broadening my "a"s and "o"s in anticipation of emigrating to Canada. Do you suppose I'll have to wear a pink triangle on my way to the border?


Copyright 2004 Seasmoke All rights reserved

Let Love Rule

Dear Senator Tarr and Representative Verga,

In court, I would argue that to say that John can marry Jane but Mary, by virtue of having XX instead of XY chromosomes cannot marry Jane is unjust and that the inequity of that discrimination goes on to grant John and marry more than a thousand legal rights and responsibilities not available to unmarried couples. I would point out that marriage is the issue, not civil union. History affords copious evidence that "separate, but equal" does not work.

In life I say that no one can legislate love and that all marriages are based upon the daily commitment of the participants. I point out that marriage is a pre-Christian and secular office that should not be confused with religious ceremonies that use the same name. I add, because I'm a trivia hound, that it was grounds for ex-communication for more the first millenium + of Christianity. Most importantly, I look you in the eye and say that if you act to prevent me from obtaining legal marriage, then you are telling me in certain terms that I am less entitled than you are. You are telling me that I am less than a full citizen. You are telling me that I am legally less than a full person. You are, in effect, relegating me to a non-status, even while I pay full-status taxes for the privilege. What comes next? Queer-only drinking fountains? Straight-only seats in the front section of Mass Transit vehicles?

When a government commits acts of hostility against its constituency, everyone loses. Conversely, when a government validates the rights of its constituency to live authentically, secure in the fact of their civil rights, everyone wins.

If you are among those concerned about the effect of same-sex marriage on The Institution of Marriage, I have some simple questions to ask: How will me marrying the woman I love harm you? How will it challenge the validity of your marriage? What IS the threat? Specifically? Ask yourself that. I keep hearing that there a threat, but no one ever seems to articulate the details.

A fellow politician, Mayor Richard Daley of Chicago, had this to say recently:

"They're you doctors, your lawyers, your journalists, your politicians. They're someone's son or daughter. They're someone's mother or father... I've seen people of the same sex adopt children, have families. [They're] great parents."

"Some people have a difference of opinion--that only a man and a woman can get married. But in the long run, we have to understand what they're saying. They love each other just as much as anyone else."

"Marriage has been undermined by divorce, so don't tell me about marriage. You're not going to lecture me about marriage. People should look at their own life and look in their own mirror. Marriage has been undermined for a number of years if you look at the facts and figures on it. Don't blame the gay and lesbian, transgender and transsexual community. Please don't blame them for it."

Those words came from a staunch Roman Catholic Mayor. He seems to have integrated the separation of Church and State in a way that our own President cannot seem to manage. Your track-record of thoughtful legislation suggests that you are more like Mayor Daly than President Bush in this regard. I'd like to think that's true. How about you?


Click the link below and watch the images. They really tell the story. Look at the faces. Realize that same-sex marriage is an inevitability and that you have the opportunity to shine as an "early adopter". There aren't too many obvious moments like that. Go ahead. Grab the brass ring. You'll sleep better knowing that you did the right thing.


Faces of Love

Sincerely,


Copyright 2004 Seasmoke All rights reserved