Paul's POZ Blog

Today is May Day. In many parts of the world today is celebrated as International Workers Day. In others it is celebrated at the beginning of spring- my ancestors called today Beltane. In big cities across the US, it is now being celebrated as Immigrants Day. It is also the day of my first blog for Poz.com.

Who am I? I am Paul Dalton. I work for Project Inform- a San Francisco based, national non-profit fighting to end AIDS through treatment and public policy advocacy and information. I am also a person living with HIV- since 1992. I am also a person living with AIDS- since 1993.

May Day celebrates the struggle of workers for a better life. In that spirit I want to celebrate activism- specifically the first generation of fighters who forged a monumentally successful movement in the crucible of fear, stigma, illness and death.

As far as I know, the AIDS activist movement was one of the first times when a group of sick people and their allies consciously organized themselves to take on the government, scientific establishment and pharmaceutical industry. It was a creative and multi faceted force- from sits-ins, to mass demonstrations at the NIH, to shutting down the Golden Gate Bridge, to writing FDA regulations, to forming community advisory boards.

The courageous first generation of fighters faced daunting odds. Vilified, ostracized and feared they had few friends and many enemies in the corridors of power. Many were sick. Many were dying.

Still they fought, and largely won.

In 1981, all we knew was there was a new disease affecting previously healthy, young gay men. Soon after it was clear it was affecting others as well. By 1985 the cause was known. In 1987 the first drug- AZT- was approved. Today we have over 2 dozen treatments available. Where once ddC was approved based on its ability it keep people alive for 6 months longer than a placebo, some now feel people with HIV can begin to expect normal life spans.

The victories go well beyond the pharmacy shelves. The Ryan White Care Act- a remarkable piece of legislation that provides care and treatment services for people living with HIV throughout the US- is emblematic of the work done in those halls of power. There are many others.

Of course the fight goes on. Internationally the lack of access to life saving medicines for the vast majority of people living with HIV in the world is nothing short of criminal. Even here in the US access to these drugs is uneven and fragile. The rate of new infections is stubbornly steady and possibly rising despite 20 plus years of prevention efforts. Vaccine development has sputtered.

There is much work to do. That is the work of today’s activists.

Today, I salute all of the activist who came before me. There can be no doubt that we would be much worse off it weren’t for the work done by those who sat in, who stormed, who picketed, who shut down, who sat down with regulators and scientists, who were arrested, who smuggled unapproved HIV drugs in from Mexico, who took the spirit of self determination and put it to work.

I owe you my life.

Note: if you want to learn more about Project Inform please visit our website www.projectinform.org

We have a national, toll free treatment Hotline, staffed by volunteers, most of whom are people living with HIV/AIDS. 1-866-HIV-INFO. We are open M-F, 10-4 pacific.

AIDS Activist Storm the NIH!- my first AIDS demonstration

One of the perks of my job is travel. Some destinations- Dublin, Ireland, Sydney, Australia- are more glamorous than others- Fresno, California or the lovely Philadelphia Airport Ramada Inn. Outside of my home state of California, the state I have visited the most in my 6 ½ years at PI might surprise you. Not New York, not Florida, not Illinois, not even Texas.

The answer: Montana. What might surprise some even more, is I love Montana.

In all, I think I have been to Montana 10 times- once for a GSK meeting and the others for a series of retreats for people living with HIV. Each year they hold three such events- one for women, one for gay men and one for couples (defined however one wants). I have been doing treatment updates at the men’s and couple’s retreats regularly for the past 5 years.

Why do I love Montana? Some of it is the scenery- most of it is the community. Rural states, with their widely dispersed populations face unique challenges in the epidemic. One of those challenges is isolation. The opportunity for people to come from the far corners of the vast state of Montana to come together and create a temporary community of people with HIV is powerful and necessary

I have always felt very welcomed in Montana. The people I meet are kind, warm and appreciative. Some wear cowboy hats.

I write this at the Salt Lake City airport, on my way to Helena. As I type I look up at the snow covered mountains just outside the airport and feel an unexpected sense of home. While it is no doubt an exaggeration, I feel like I have gotten to know every person living with HIV in the state. Twice a year, I feel like an honorary Montanan. For that I am grateful.

I just came back from my trip to Montana- which was as relaxing and reviving as always. David Herrera and all of the folks with the Montana Gay Men’s Task Force should be commended for the outstanding work they do for all people with HIV throughout the state. So should the staff of Feathered Pipe Ranch, especially Howard who make everyone feel so at home.

On Saturday morning, directly after breakfast and fully caffeinated, I gave my current treatment update for the entire group. In the afternoon I held a smaller group question and answer session. Both of those sessions went well, seemed well received and were hopefully helpful for the participants.

Throughout the weekend I also talked informally with many of the folks there about their situation. These one-on-one talks are typically my favorite part, because I get a chance to really learn each person’s story. Over the years I have grown attached to Montana, and the people I have met. The folks living with HIV there are a diverse, interesting and wonderful lot. After this weekend, I am concerned about some of their docs.

Two stories stand out. The first was a guy who came up to my right after my first talk. He had been taking Sustiva plus Combivir for about 2 years and had a very difficult time with side effects. Fair enough. His doctor’s approach? Put him on Combivir alone!

He wanted to know if this was okay? Uh, no. I was clear that it is never my job to tell people what they should and shouldn’t do, but that Combivir alone was not considered appropriate treatment- by the Federal Guidelines, or just about anyone else. Luckily it had only been a couple of weeks- but still.

The second guy was taking unboosted Crixivan (three times a day on an empty stomach) with Zerit and Epivir. That might be okay if this were 1997, or he didn’t have significant facial wasting, and peripheral neuropathy. But none of that is true.

I know that it is unrealistic to expect that everyone with HIV get the kind of care I am afforded by living in the Bay Area. But these two stories illustrate a real problem- particularly for people living in areas with few HIV experienced providers. I would love to think that in 2008, nobody would get this level of awful care- but I know it isn’t true.

I referred both of these guys to the Federal Guidelines and a telephone service of the University of California San Francisco that provides expert guidance for physicians who are not experts but who are treating people with HIV. I hope that was enough to get both of them the proper care they need.

Oh, and I got a cool pair of socks with bison on them during the white elephant exchange. Yay for me.

Last week I wrote in praise of the early AIDS activists. At the risk of organizational immodesty, I would like to praise one in particular—Project Inform’s Martin Delaney.

Marty is one of the founders of the AIDS activist movement. As chronicled in Jonathan Kwitney’s book, Acceptable Risks, responding to the failing health of his partner and many friends, Marty took action. This model of direct action in the face of despair became the driving principle of the budding AIDS activist movement in the mid-1980s.

He began as a drug smuggler, carting experimental HIV treatments in from Mexico at a time when the FDA dragged its heels as the scope of the epidemic started to become apparent. Marty was not living with HIV himself, but nonetheless had firsthand experience with the very real and personal cost of bureaucratic indifference.

As a participant in a clinical trial for an experimental hepatitis B treatment, he saw a promising treatment denied to folks who needed it. He also suffered the day-to-day consequences of trying to treat a chronic and often debilitating disease—particularly one that was disproportionately affecting gay men.

Marty started Project Inform as a six-month project in 1985. Obviously, it has gone on a bit longer than originally imagined. Quite unintentionally (like many (most?) others in the field) he became an expert in the nascent area of treating HIV. In 1985, HIV was discovered and no approved treatments were available, or even on the horizon. The FDA, under the negligent watch of the Reagan administration, was no friend to people with AIDS. It was up to these burgeoning activists to make change happen. And they did.

As word spread that Marty and others were amassing what little was known about possible treatments for HIV, calls for this information overwhelmed his home phone. Project Inform’s hotline grew out of this need, beginning in his own garage. Today our toll-free National HIV/AIDS Treatment Hotline provides much needed information and support to people infected and affected by HIV throughout the US.

From those humble and quite accidental early days, Marty helped build Project Inform into a leading national HIV treatment and public policy information and advocacy organization. I have been fortunate to work alongside him for the past 6.5 years—first as a trainer, then as a rookie treatment writer, and now advocate.

Marty is now semi-retired … with an emphasis on the semi. There’s little chance you will find him on the golf course or playing shuffle board in Miami. He is still working as hard as ever to end this epidemic, dedicating this phase of his life to promoting cure-based research. His day-to-day programmatic role at Project Inform is less now. Our new Executive Director, Dana Van Gorder, started in November 2007, and I have assumed leadership of our treatment focused activities.

It is truly humbling (and, I confess a bit anxiety provoking) to follow in Marty’s footsteps—along with Brenda Lein, Ben Cheng and the many other brilliant activists who have worked here at PI. Without Marty’s leadership and mentoring, I wouldn’t be half the advocate I am today. Without Marty’s leadership in the fight against AIDS, I don’t know if I would be here today.

As much as he might want us to, Project Inform cannot let Marty go too quietly. We are hosting two events to honor his vital contributions to the fight against AIDS—one here in San Francisco and one in Washington, D.C. For information about these events, please see our website: http://www.projectinform.org/support/events.shtml

Marty would be the first to acknowledge that he is but one of many important movers and shakers in the fight against HIV/AIDS. Their work has brought us much progress, but as my last post shows, there’s much still to do. Maybe the best way to honor Marty and all the others, who battled the scourge of HIV/AIDS, is to continue the fight.

I have been called to task for making ‘sweeping generalizations,’ and ‘obvious misstatements,’ regarding my post titled, ‘Trouble in Paradise.’ Let me take each issue separately.

Sweeping generalizations:
I didn’t intend to put forth the idea that those two situations were typical, or even common throughout Montana. Over the years I have been going to Montana, I have heard a range of stories regarding medical care, and few of them were troubling. Most of the folks I have spoken with are getting fine care from what I can tell. Also, I am fully aware that I am more likely to hear the weird and bad stories than the good. After all, if you are doing well, getting good care, on the right meds and so on, you are much less likely to talk to me about your situation.

If I gave the impression- which it seems that I did- that either 1) those cases were typical, or 2) that Montanans with HIV get substandard care, I apologize. It wasn’t my intent, and I take the feedback to heart. Oh, and I would love to come to the clinic next time I am in Montana- which looks like September.

Obvious misstatement:
This referred to the guy who was having a difficult time taking Sustiva and Combivir and who told me his doctor had switched him to Combivir alone. The point made here is that, if someone were starting a treatment interruption they would indeed stop taking the Sustiva for some period of time before stopping their Combivir, to prevent the development of resistance. This was not the case with the guy who spoke to me- I asked the question, and he said that they had not discussed treatment interruptions at all.

Perhaps I could have- should have put that detail in.

So maybe I can chalk this up to being a newbie in the blogosphere. For the past 4 years I have been writing HIV treatment information for Project Inform. We write in a certain way, and take care to try and ensure both completeness and accuracy in our materials. I confess that I do not take the same kind of care when blogging, and possibly this illustrates that I should.

Now, what I wanted to write about today:
HIV and the Mortgage Crisis.

We received a call on our Hotline this week from a man who was forced to choose between paying his mortgage and getting his meds. He chose to pay his mortgage, but still got behind. He has fallen into that trap of having too much money on paper to qualify for things like his state’s ADAP program, but not having enough to really cover his medical and living expenses.

I have been waiting for this kind of call. The current ‘economic downturn’ was bound to hit folks with HIV. The idea that someone, in the richest country in the history of history, would have to choose between his housing and his health illustrates the madness of our health care system. Sicko indeed.

Been away from the blog for a few days. I was on the road, traveling to Birmingham, Alabama for a treatment update meeting. Normally being on the road doesn’t keep me from wanting to write, but this time it did.

I am an experienced traveler- more so than I can really believe. Most of the time I travel pretty well, but this trip kicked my butt. I was tired the whole time and had a really hard time getting any work done.

It was great to do the meeting in Birmingham- another city I can chalk up on my list of places I might never have been if it weren’t for my job. I wish I could say that I got a sense of the place, but I didn’t. I got in after midnight on Monday night, did my meeting on Tuesday afternoon- rested the rest of the day and left early in the morning on Wednesday.

There has been some interesting chatter going on in the treatment activist world about Abbott. Abbott, makers of Kaletra and Norvir, are being sued for their notorious 400% price hike on Norvir. As part of the suit, the plaintiffs filed to have some internal Abbott docs released. Some of them have been and they are telling.

Abbott is not well liked by treatment activists. Not at all. When they quadrupled the price of Norvir, many of us said that there were two clear reasons for doing so- first to make more money off of Norvir, which was only being used as a booster at that point. That part was clear. We also argued that they were trying to give Kaletra a pricing advantage over all other boosted PIs- which it did.

If you want to glimpse inside Abbott take a look at the documents. They paint a truly ugly picture. At one point they considered stopping the sales of Norvir altogether- which would have left Kaletra as the only boosted PI option. Short of that ‘nuclear option’ they settled on an unprecedented price gouging.

This behavior has led all treatment activists to despise Abbott. It has also created a bit of an activist controversy over whether we, as a community, should talk to Abbott. Right after the price hike the community basically boycotted Abbott. This made sense at the time- action needed to be taken to show our collective displeasure. I don’t think it makes sense anymore.

Not talking to Abbott feels better, but basically lets them off the hook. When they don’t talk to us they get to do what they want, with impunity. For example they developed a heat stable (Meltrex) formulation of Kaletra a while back, which meant it didn’t need to be refrigerated anymore. This is particularly important for the developing world, where maintaining a cold chain can be impossible.

They have not however developed a Meltrex formulation of Norvir. There is no reason that they can’t develop one, but it isn’t really in their immediate interests to do so. Without the activist breathing down their corporate necks, it has been that much easier for them to dawdle on this.

Below is the link to the released documents.

http://www.prescriptionaccess.org/lawsuitssettlements/current_lawsuits?id=0022

An HIV positive Texas man was sentenced to 35 years in prison for allegedly spitting in the face of a police officer during an arrest for public intoxication. Willie Campbell, a 42 year old resident of Dallas was convicted of ‘assault with a deadly weapon’ for spitting on an arresting officer after being placed in the squad car.

HIV is not spread through saliva- a fact which has been known since the early days of the epidemic. The Texas court system is using Mr. Campbell’s HIV status as a weapon against him- and by extension all people living with HIV.

There have been other cases of this type of judicial outrage against people with HIV. The science on this is clear and convincing. That the jury was even given the opportunity to consider these charges is beyond the pale.

This is a clear cut case of discrimination against people with HIV. All of us should be up in arms.

I sit on Project Inform’s Institutional Review Board. IRB’s are one of the safety measures designed to ensure the safety and interests of research subjects are protected in the research process. PI’s IRB is meant to focus on community based research, particularly what is called ‘investigator initiated’ trials.

We hadn’t met for an entire year (OK, a year minus 3 days). Why? Nothing much to do. Even when we met last night, there was very little on our agenda.

There is just little of this kind of research going on. Some of the explanation is money- tighter competition for research dollars, more going to large research institutions and so on. Some of it is scientific ennui- a real lack of energy behind the kind of smaller scale, cutting edge research which typifies community based trials.

It is not just a shame, it is a problem. Most of the trials that are going on are coming from either industry or large institutions. There is nothing wrong with that kind of research- in fact some kinds of trials really should be coming from the companies or large networks. There is a conservative bent to this kind of research. It is not the best environment for cutting edge, creative kinds of research.

It makes me think, oddly of the Defense Department. They have a research group- called DAPRA (the Defense Advanced Research Agency), that does some weird, highly creative research- some of it downright wacky. The point is they have the freedom to do the kinds of research that has a high likelihood of failure, but also a big upside if it doesn’t.

My concern is a growing trend toward conservative, low risk, low reward, incrementalist research. I am all for incremental advances, but we need to try for the pie in the sky stuff as well. I am particularly interested in cure focused research. For a nice overview on the topic see http://projectinform.org/info/pip/45/index.shtml

Often I feel pretty cocky about my HIV disease. After all, I am a professional treatment wonk, who thinks, reads, writes and talks about HIV treatment day in and day out. I am also pretty healthy- my CD4s have hovered around 500 for years now, my regimen is stable, easy to take and has no noticeable side effects.

It certainly wasn’t always the case. I once had a CD4 count of less than 30, had Kaposi’s Sarcoma all over my body and I weighed under 140 pounds (I am a bit over 6’1”). There were times when I choked down over 50 pills a day. I went from choking down 36 Invirase a day, to holding on through a year of Crixivan (pre-Norvir boosting), and endured Virecept and the low point of all full dose liquid Norvir.

So, now as I take my 3 pills, once a day, no food restrictions no side effects regimen, it feels like a piece of cake. Likewise, when my doctor’s visits are more about my high blood pressure, or losing a few pounds, rather than keeping me alive, I feel totally on top of my HIV disease.

Then there are days like today. First off, I left one of my meds at work, and I am out of town for a few days. I went to Walgreens here in Portland to see if I could get some, but they didn’t have the drug in question and couldn’t get it till Monday. They called 2 other nearby Walgreens, and no dice.

Then I get a call about my friend Nilda. I have known Nilda for many years. I got a call from a friend of hers today and she is in the hospital with kidney failure. I am not sure why, and it might not be HIV related. But then again it might.

Hubris is basically the folly of overconfidence. Life has a funny way of reminding us how powerless we can be- whether it is a pharmacy not having a medicine in stock or a beloved friend sick in the hospital.

I will find myself my meds, and I will hope that Nilda gets better. And I will wake tomorrow a bit humbler for it all.

I just returned from my first non-work related trip in so long I can’t remember. I drove up to Portland, OR to visit my daughter and hang out with punk rockers. The highlight of the trip was a dramatic thunderstorm on Saturday night. I grew up in Rochester, NY and we had thunderstorms pretty regularly. Here in the Bay Area, they are rare and unimpressive. Apparently, they are rare in Portland (surprising given the amount of rain they get), and this one was impressive.

I was happy to see that my post about Willie Campbell struck a chord with folks. At last count there were 60 comments. It is times like there when I miss the 80s. While I was living it the 80s were characterized by despair and apathy. In retrospect, they were a time of both regression (Reagan, AIDS, the S&L scandal, Hair Metal…) but also tremendous action (ACT UP, the anti-Apartheid movement, Punk). Right now we are at war in 2 countries, the economy is tanking, the planet is sick (if not dying)- and by and large we aren’t in the streets. Why?

Long time radical activist, folk singer and all around cool dude U Utah Phillips recently died. Phillips was one of those great life long gadflies- the folks that never stop sticking it to the man. He spent decades organizing unions and singing folk songs. He never went quietly in to that good night. He is a kind of secular saint to me- an example of a life spent in struggle for a better, more humane and just world.

So today I am grateful for Thunderstorms, AIDS activist, and secular saints.

As an activist and person with AIDS, I am vexed by the folks I call ‘denialists.’ These are people who believe- for various and disparate reasons- that HIV is not the cause of AIDS. They vex me because 1) they run in some of my circles, 2) they are dead wrong and 3) I want very badly to shut them up.

HIV denialism comes in a few flavors. There are the folks who see conspiracies lurking behind every bush. There are the bigots like Duesberg, who literally hate folks with HIV/AIDS and bend over backwards to pin our disease on our apparently aberrant behaviors- like having sex and getting high.

And then there are the instinctively oppositional folks, the molecular level rebels. These are the folks that run in my activist and, to an extent punk rock circles. A few years back, while attending an Anarchist conference in Toronto, some of them held a denialist workshop. It was disgustingly well received, in spite of my persistent debunking.

These are folks- like me- who seek to overthrow nothing less than the whole world. We stand in opposition to the powers that be, pretty much no matter who they are. Most of the time that puts us on the right track. Examples of enlightened governance are few and far between. Sometimes it turns in to knee jerk oppositionalism- poorly thought out, reactive anti-establishment thinking.

Now, I will put my anti-establishment credentials up against almost any one. As much of a revolutionary that I might be, I am also a skeptic. I am deeply mistrustful of dogma and group-think. These kind of denialists see themselves as challenging mainstream medical dogma, but aren’t. They are engaging in a mishmash of pseudoscience and conspiracy theory that is frankly unseemly for people who purport to fight on the side of the downtrodden.

I am generally opposed to shutting down people’s ability to express themselves. But just as I protested the notorious Holocaust denier David Irving’s speech at UC Berkeley years ago, I protest these folks. Recently Duesberg and his press lackey Celia Farber were given awards as ‘whistleblowers.’ What a crock! They are no more whistleblowers than the folks on school boards around the country who are trying to have creationism taught as science- but to much worse effect.

Sometimes denial dies harder than denialists. Here in San Francisco a gaggle of denialists took over ACT UP SF, and turned it into a denialist group. Most of their leadership is now dead of AIDS. Worse still is the impact this has on people with HIV, who fall prey to the all-too-attractive message that HIV is harmless.

One of the worst cases of this involves the well known denialist Christine Maggiore, who wrote ‘What if Everything You Knew About AIDS Was Wrong?.’ Her daughter, Eliza Jane was never tested or received care for HIV. She died of AIDS. She was 3.

Denial=Death.
Fight for the Truth.
Fight AIDS.