Twenty years and counting into the pandemic, an educator and activist ponders why we are still struggling with the virus and must keep confronting our government.
by Rich Arenschieldt
paintings by James Reaben
2004 marked my 20th year of living with HIV. I remember reading about the discovery of the virus in 1984 while a senior in college. At that time HIV was related to an unknown and elusive illness that was affecting gay men. I was on the brink of commencing my sexual career (albeit cloistered within the world’s largest Baptist university), and I was mystified. Twenty years ago, there was no gay-friendly Vermont or Massachusetts, no Will, Grace, or Ellen. It was an entirely different universe where the gay community was insular, active within only certain geographic enclaves. Sitting at breakfast reading the New York Times, I wondered what this “syndrome” was, who was responsible, and how this boogey was going to impact me.
After being directly involved with the epidemic in various volunteer and professional capacities for 15 of the past 20 years, much about HIV still eludes me. However, given a historical perspective and modicum of wisdom that accompanies middle age, the question at the forefront of my mind is this: Why, in 2005 are we still unable to manage the HIV/AIDS epidemic? The answer is more multifaceted that any other facing humanity today.
The rational man will, when confronted with an insurmountable issue, divide the conundrum into manageable compartments. The challenge when addressing HIV is that none of its related subsets easily subject themselves to manageability or compartmentalization.
Complex problem
The bug itself defies us at every opportunity. The HIV genome is easily deconstructed: a simple construct of nine proteins in a kind of viral peanut M&M with a sugar (literally) glycoprotein coating and an RNA center that possesses some very nasty capabilities. Medicine has dealt with numerous viruses over the years, as evidenced by the discovery and isolation of the SARS virus last year, and has, in some cases, a pretty good capability to define and defend us against them.
HIV confounds us in two specific but completely different areas: its genetic variability and its principle target of action. Though many parts of HIV are “conserved” (common across all HIV subtypes or “clades”), the virus morphs like a Power Ranger—more than almost any virus we’ve ever encountered. For example, when you are vaccinated against any pathogen, the vaccine that you receive varies only slightly from year to year. Measles vaccinations that we received as kids were pretty similar in their genetic construction to those that our parents were inoculated with when they were tots. Scientists usually just tweak the antibodies from year to year to maintain vaccine efficacy.
HIV, as the result of its voracious ten-billion-plus-per-day replication rate and quirky ability to copy itself incorrectly, creates every possible mutation of itself every day. Recent research from Spanish scientists suggests that HIV may, in fact, replicate at an even higher rate than previously thought.
From the onset of the epidemic, some savvy scientists realized what an aggressive pathogen they were facing. HIV disease spurred significant research whereby quantum leaps were made in unraveling the intricacies surrounding the disciplines of virology and immunology. Preservation of immune function and, later, the diminution of viral replication became the pillars upon which treatment of HIV were founded. To accomplish this and short-circuit viral replication, Western medical practitioners have relied on HIV chemotherapy (yes, chemotherapy) to corral this antigen. Nowhere else have our efforts been so successful and so frustrated.
Pharmaceutical mechanisms of action against HIV have progressed from the over-dosed AZT monotherapy days, through the “Please carry your own pharmacy with you” days, to the current paradigm of “Fewer pills! Fewer dosing restrictions! More unknown long-term side effects!” Current therapies (with one exception) all intervene against replication inside the T-cell. This intracellular distinction is critical. Our bodies are designed to be innately protective of themselves. Any time we introduce elements that start interfering with our basic cellular mechanics, havoc eventually ensues. This occurs in the treatment of many diseases—loss of hair as the result of cancer chemotherapy, fatigue when treating hepatitis with alpha-interferon, and with HIV treatment a constellation of debilitating side effects.
When the FDA approves an anti-retroviral medication, what normally happens is this: Industry says, “In clinical trials this medication performed fabulously.” The medication hits the market, and patients hanging on for dear life take the new medication only to have their physicians later tell them, “Your viral load is unquantifiable, but due to increased cholesterol your tube of blood looks like a milkshake and you might have a heart attack.” Many new formulations are limited not only by their resulting toxicities but also by the fact that most new agents need a pharmakokenitic “booster” to increase effectiveness and combat HIV’s many genetic barriers.
Good prospects
News from the medication front isn’t all doom and gloom. A bright spot on the pharma horizon are meds in development that work outside the T-cell, preventing HIV from attaching to and infecting it. While pharmaceutical giant Roche pioneered this process with Fuzeon, (an agent that will probably never recoup its $600 million R&D price tag), other, more promising drugs are in the pipeline. A few of these are being studied right here in H-town. Various attachment and co-receptor inhibitors, working extracellularly, may be the next great hope for people with HIV. PWAs have become accustomed to hearing about “the new and improved breakthrough.” Perhaps these novel mechanisms of action will indeed have the same effect on the virus that protease inhibitors did when they were introduced in the mid-1990s, facilitating a major improvement in the HIV treatment paradigm.
Another phenomenon unique to HIV is that its tremendous propensity to multiply also profoundly impacts our inability to deal effectively with this disease. When an individual is first exposed to HIV, during what is called Primary HIV Infection (PHI), the body mounts a fairly effective defense focused on controlling viral replication (as our immune systems do when managing most other viral infections). What researchers cannot decipher is how to sustain that initially effective immunologic response over time to prevent destruction of T-cells, the generals of our immunologic army.
Primary HIV Infection is HIV’s mechanism of stealth invasion. When first exposed to HIV, individuals become immunologic time bombs, allowing the virus to make millions of copies of itself before the immune system has the chance to manufacture antibodies to fight off infection, something that normally take weeks to accomplish. The ramifications of this sequence of events are of supreme importance from an epidemiological perspective. Ponder this: If you believe you have been exposed to HIV, what’s the first course of action? Usually it’s a trip to the doctor. Unless your physician is especially astute and does a sexual risk assessment on you, 95 percent of the time he will diagnose you with the flu and send you home. If you are brave enough to visit a clinic and get an HIV antibody test, you will again usually receive misleading information. During PHI, guess what your immune system hasn’t yet produced? HIV antibodies, the very thing the standard HIV test tries to find. Consequently, you receive a negative test result, while your body is producing millions of virons.
Carry this one step further. Most people know that the risk of acquiring HIV exists on a continuum, with George and Laura sitting on one end of the line and an intravenous drug user partnered to someone who has unprotected receptive anal sex perched on the other. The relative infection risk for oral ? sex is generally thought to be low, somewhere between four and seven percent. Let’s assume someone with PHI is the insertive partner in an oral sex act with ejaculation. Given the viral dynamics associated with PHI, under these circumstances, the infectivity risk to the receptive partner skyrockets. In a scenario in which there is unprotected receptive anal intercourse with someone in PHI as the insertive partner, the risk of infection soars. A fundamental question with regard to HIV in 2005 is this: Are a small number of gay men with PHI as insertive partners to HIV negative men driving this epidemic? Add the variables of Viagra and crystal meth to this mix, and you have job security for HIV treatment educators in perpetuity.
Money, money
In our quest to control the epidemic, we have relied on watered-down prevention messages and access to medications for medically indigent HIV individuals via the AIDS Drug Assistance Programs (ADAP) supported by a combination of federal and state funding streams. These funding sources are shrinking. Ryan White CARE Act funding was cut this year—the first such decrease since its inception in 1990. At a post-election November meeting of 300 HIV clinicians and researchers funded through the National Institutes of Health, two concerns were omnipresent: Will bioterrorism and homeland security hold AIDS research hostage? And, more critical, will the CARE Act be reauthorized in 2005? And if so, what restrictions will individuals with HIV face in order to access care?
These questions bring a major structural impediment to light. Care and services for individuals in Houston are provided by AIDS service organizations that are, at a minimum, 75 percent Ryan White-funded. In spite of repeated calls for diversification of funding, it seems as though everyone expects the Ryan White gravy train to keep chugging along. This begs the question: What are the two subjects that George and Laura are least likely to discuss at the White House dinner table? Sex and drugs. What are the two factors by which HIV is most often transmitted? Sex and drugs. In a morality-permeated political environment that promotes a Biblical approach (guess they’ve never read Song of Solomon) that justifies decreased access to care, it would be naïve to expect federal funding to keep pace with the epidemic.
Here’s a prediction: In the next two years we will see a dramatic decrease in services to individuals with HIV. Of the 23 currently approved Ryan White-funded service categories, only primary medical care, dental care, and medication assistance will be funded. The 15-year buffet of aid for AIDS will end sooner than we think, especially in light of decreased federal funding combating an increasing population of HIV-positive individuals who are living longer, growing older, and requiring more complex medical and psychosocial interventions. As competition to fund other health-related services increases, HIV may no longer enjoy its “protected status.” The original philosophy of the Ryan White CARE Act was that every HIV individual has access to a continuum of care whether he or she lives in a metropolitan area hard hit by the epidemic or in rural America. Given competition from other national health concerns (obesity, cancer, and hypertension), HIV-positive individuals may be forced to seek services from other providers.
HIV/AIDS prevention interventions have limited effectiveness in the best circumstances. Future efforts, hamstrung by politically motivated morality, are certain to be increasingly ineffective. The view that permeates prevailing American culture is this: In America, sex is bad, and violence is good. This is in direct contradiction to the rest of the Western world, especially Europe, where sexual expression is considered healthy, and violence is generally abhorred. Our inability to deal with human sexuality from an honest and rationally scientific point of view assures that continued ignorance will fuel this epidemic.
Risk factors
It’s an established fact that prevention and adherence to medication regimes are both more effective when treated individuals witness the impact of an epidemic around them. Since our current HIV images consist of magazine ads in which Abercrombie & Fitch look-alikes rappel off of cliffs, we cannot rely on seeing AIDS as we once did—evidenced by young men with Karposi’s sarcoma lesions visible at 20 feet. Given that behavioral methodologies haven’t quelled the epidemic, is clear that a scientifically based therapeutic solution is what is necessary to mitigate this disease.
We have failed to contribute the necessary dollars to the development of an effective therapeutic vaccine (in which the vaccine helps to stimulate the body’s own defenses) or a preventative vaccine (in which the vaccine provides the body protection against an invader). While this is our most daunting task, scientists are looking at tools such as RNA interference whereby selective silencing of specific genes is accomplished without destroying an entire genetic sequence. While this targeted approach has applicability to vaccine development, the consensus scientific opinion is that an effective vaccine of either type is at least another decade away.
Hurricane season is over, but our perfect storm is upon us. Two decades into the pandemic, this nation, in spite of the millions spent on prevention messages, has failed to prevent new infections. We also have failed to adequately fund domestic HIV/AIDS concerns while playing an appropriation shell game consisting of empty promises for global funding. Money previously allocated domestically is now moved internationally out of reach from taxpayers. The needs of those in Texas and the center of the nation remain adrift while bi-coastal concerns are instead continually brought to the forefront of the national political agenda.
Given the debacle of the recent election results on all things GLBT-oriented, it might be tempting to get into bed, pull up the covers, and reemerge in January 2008 when the groundhog may be cast out of his hole for not seeing the shadow surrounding the HIV/AIDS crisis. But we can’t risk that behavior either. If politicians are tired of seeing HIV with a gay male face, it’s about time we start showing them others that more resemble their own. Confounding this is the fact that individuals will only come out of hiding when their specific survivability is endangered. HIV-positive men possess years of experience as a marginalized community. If other infected individuals come forth, an established community of advocates can train them to become participants in the political dialogue to demand a seat at the table.
The next four years will be the most decisive regarding HIV/AIDS funding and public policy since the beginning of the epidemic. The current political regime believes that the perpetration of violence is preferable to the care of our own citizenry and that the rights and needs of individuals without economic power are expendable. Society in 2005 increasingly vilifies individuals who exhibit characteristics outside the recently ordained narrow norm. After more than 20 years of struggle with the epidemic, we must once again insist that hatred focus on the HIV virus itself, not the persons carrying it.
Do not let the narrow Republican agenda catapult us back to 1984. Time is moving away from us.
Rich Arenschieldt is an HIV treatment educator who works with HIV-positive individuals, their medical providers, and the AIDS service organizations that support them. He reported on bleak prospects for AIDS funding in our December 2002 issue.
About the Artist
James Reaben, the painter and sculptor who created the works on these pages, was born in Houston in 1956. His first solo exhibition was held at Studio One in 1983, writes Kendall Curlee in the entry on the artist in the Handbook of Texas Online. “After this exhibition he developed a more subtle but no less disturbing style using imagery from his dreams and ‘charged’ materials. He was inspired by the writings of French poet and dramatic theorist Antonin Artaud, whose words he often quoted in his work; he also found inspiration in the visionary art of the Texas painter Forrest C. Bess.”
As with too many artists, HIV altered the progress of Reaben’s life and career. “Reaben was diagnosed as having the AIDS virus in 1987,” Curlee continues, “and his knowledge of his impending death increasingly colored his works….His last works, drawings executed with his left hand after his right hand had been stilled by toxoplasmosis, were included in Tradition and Innovation: A Museum Celebration of Texas Art at the Museum of Fine Arts, Houston (1990). His work is included in the permanent collections of the Menil Collection, Houston, the Museum of Fine Arts, Houston, and the VooDoo Museum in New Orleans, Louisiana.”
Reaben died in 1989. Read more about his life and work in the Handbook of Texas Online, produced by the Texas State Historical Association (www.tsha.utexas.edu).
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