Wednesday, December 10, 2008
Vanquishing AIDS: Notes on Ending the Epidemic in America
by Paul Bellman, MD
Paul Curtis Bellman, MD, is a physician whose private practice in Greenwich Village, New York, has specialized in caring for HIV-positive patients since 1986. Dr. Bellman is a board certified internist and currently an associate attending in the Department of Medicine at St. Vincent’s Manhattan and a senior lecturer in the Department of Immunology at Weill Cornell Medical College in New York. He is a 1982 graduate of the New York University School of Medicine and has been involved in the clinical care of HIV-positive people since the epidemic began. Bellman actively participates in clinical research as well as the clinical practice of HIV medicine.
In his victory speech on election night, President-elect Barack Obama said, “If there is anyone who doubts that America is a place where all things are possible, who still wonders if the dream of our founders is alive in our time, who still questions the power of democracy, tonight is your answer. It’s the answer…told by the many…who believed this time must be different because their voices could be that difference. It’s the answer spoken by young and old, rich and poor, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled.”
As a doctor who has treated people living with HIV/AIDS since the early ’80s, it is my hope that when Barack Obama is inaugurated, he will add to the above list: “and HIV-positive and HIV-negative people.” Because the time has come for HIV/AIDS to be a nationally recognized epidemic, and it is my great hope that the new administration, led by Barack Obama, will bring a new day of reckoning to our fight against HIV/AIDS in America.
In his speech, Obama claimed that the very act of electing the first African-American president was itself an indicator of change. He said, “It’s the answer that led those who’ve been told for so long by so many to be cynical and fearful and doubtful about what we can achieve to put our hands on the arc of history and bend it once more toward the hope of a better day.… It’s been a long time coming but because of tonight, because of what we did on this day, change has come to America.”
Certainly on the occasion of this 20th World AIDS Day, we need a world of change. As the number of people living with HIV globally tops 30 million and as we discovered this year that the HIV infection rate in the United States is 40 percent higher than previously estimated, it is clear that our approaches to preventing HIV are not working optimally. It is my belief that the key to stopping AIDS lies in the destigmatization of people living with HIV—and a key to that lies in illuminating the fact that people on treatment are less infectious than is generally understood.
As a physician who has worked on the front lines of the HIV/AIDS epidemic in New York City since the earliest days, I’ve got some very good news to share. There has been new progress in medical treatment for HIV-positive people. The goals shared by doctors and people living with HIV—for HIV-positive people to have a normal life span and a great quality of life—are increasingly possible.
Recently FDA-approved medications are proving to be highly effective in treating what were previously very difficult to treat drug resistant HIV-positive patients. This development is one of the most important and helpful in HIV treatment since antiretroviral (ARV) therapy was first introduced 20 years ago. It means physicians can now treat almost every HIV-positive person who needs medical care.
In 1996, we experienced the first major breakthrough in treatment: a development known as highly active antiretroviral therapy (or HAART). Using a combination of certain medications (or “cocktails”), we saw dramatic improvement in patients whose lives previously could not have been saved.
However, over the years since, a significant number of patients developed drug resistance to their initial HAART cocktails or certain combinations of medications. To address this, new ARV medications were developed. However these new meds were often reformulations within existing classes of drugs and they were too few and too ineffective against drug-resistant virus to help some patients.
As a result, we have needed either more potent drugs with different mechanisms of interference with viral replication or drugs that remain effective even when some degree of drug resistance has been developed to other drugs in that class.
Fortunately, today, both types of new drugs are available and the results are extraordinary. Even the most difficult-to-treat, multi-drug-resistant patients in my practice are responding to drug cocktails utilizing these new medications. The way some of my sickest patients are rebounding to health reminds me of the days when the lifesaving powers of HAART first became available.
In addition to our improved ability to save the lives of most people living with HIV is the impact that being able to lower people’s viral load can have on our ability to stop the spread of the disease. Attaining an undetectable viral load is an important goal of HIV therapy. This result doesn’t only mean that an HIV-positive person is more effectively treated; it also means he or she is theoretically less contagious. It appears that effective treatment that reduces the viral load of HIV positive patients to undetectable levels for more than six months (and if no other sexually transmitted infections are present) severely limits the chance that HIV might be transmitted through sex from an HIV-positive person to an HIV-negative one.
If this finding is correct, then its proper incorporation into HIV prevention strategies could have an enormous impact in reducing the incidence of new HIV infections. This finding could potentially transform the landscape of the HIV/AIDS epidemic globally in as positive a way as effective treatment has.
The discovery of the strong link between a person’s viral load and his or her level of infectiousness was made by a Swiss governmental commission comprising a team of highly regarded HIV experts led by Bernard Hirschel, MD. He led an investigation about new HIV infections and the conditions under which they occur. Dr. Hirschel found that no new infections were observed in the HIV-negative partners of HIV-positive people when the HIV-positive partner was on effective treatment as measured by an undetectable viral load. It didn’t matter whether the sero-discordant couples practiced safe sex. According to Hirschel, effective treatment of HIV-positive people—and not whether or not they practiced safe sex—was the most reliable means of stopping HIV transmission.
Hirschel advised that his finding applies only to monogamous, sero-discordant couples in which the positive partner has been on fully effective treatment for six months as defined by an undetectable viral load. Furthermore he/she must be fully adherent with his or her treatment. Hirschel urges that strict safe-sex precautions be followed in all other situations. He also acknowledges that his assertion is based exclusively on studies of heterosexual couples and that further study is required to determine whether the same outcomes would be seen in gay couples.
Hirschel’s findings have raised questions about whether effective treatment for HIV could serve as a form of prevention. Prevention strategies based on the notion of effectively treating HIV-positive people to the point that they are noninfectious (or at least minimally infectious) would, of course, have to stress compliance and monogamy. And regardless of whether a “treatment-as-prevention” approach were employed, safe-sex education would remain a cornerstone of HIV prevention efforts as the majority of HIV-positive and negative people do not find themselves in monogamous relationships with someone whose viral load has been immeasurable for six months or more and who has no other sexually transmitted diseases and who is perfectly compliant with his or her treatment regimen.
Still, while perhaps the majority of people might not meet the criteria necessary for being able to forgo safe sex in a serodiscordant heterosexual relationship, I believe it would help people understand the necessity for strict safe-sex precautions in the many situations in which the conditions for non-infectiousness or extremely low infectiousness can not be met. And I believe most people would more cheerfully and consciously be more adherent to their medications if they understood the potential for treatment to bring about a state of sexual non-infectiousness.
Implementing a comprehensive prevention strategy based on Hirschel’s findings would require improved access to testing and effective treatment. People would need to know their HIV status and be comfortable communicating it to potential sexual partners before having sex. And those who are HIV positive would need to be able to access and afford treatment for HIV.
It also requires that public health authorities further evaluate and if appropriate endorse changes in current safe-sex recommendations and then carefully educate the HIV-positive and HIV-negative public about those changes. Current guidelines regarding how to practice safe sex can be found on the Centers for Disease Control and Prevention (CDC) website. These guidelines should be strictly followed.
For all of these things to happen—for people to be willing to get tested, get treated and disclose—HIV/AIDS needs to be destigmatized so that people are not afraid to face the disease and ask for support and care if they have it.
Many HIV-positive and negative people, subconsciously fear the transmission of HIV. The very possibility that HIV-positive people may not be infectious (sexually or otherwise) could itself be the foundation to remove the enormous burden of shame, guilt and stigma that HIV-positive people suffer daily.
Destigmatizing HIV/AIDS must be an essential piece of any prevention strategy. A comprehensive public health education campaign should be launched to destigmatize HIV-positive people—and the disease itself. Historically, HIV prevention efforts have been based on safe-sex or abstinence-only messages. This approach has led at best to a stabilization of the HIV infection rate—but it has not succeeded in reducing the number of new infections even though HIV is preventable.
Interestingly, the rate of new HIV infection is climbing most dramatically in communities in which stigma, prejudice and marginalization are particularly intense. It is well known that fear and loathing around HIV in America are barriers that interfere with HIV testing and appropriate medical care and, as a result, drive new infections. Stigma also increases the likelihood that proper HIV care will be delayed until serious medical complications force people into care—sometimes tragically too late.
Imagine the impact on HIV prevention efforts if almost every single HIV-positive person were treated properly for HIV and, as a result, became noninfectious? Imagine if more people at risk for HIV were comfortable getting tested and had access to testing centers and follow-up care? The majority of new cases of HIV are the result of the virus being transmitted from one person to another with neither partner knowing that one partner is HIV positive. Imagine how encouraging it would be for the countless number of people too frightened to be tested or treated to learn how effective HIV treatment has become—and, most important, that the treatment not only saves lives but also dramatically reduces the risk of HIV transmission.
Imagine for a moment the way the HIV community could be healed if it were widely known by everyone—positive or negative—that having the virus does not intrinsically mean that one can sexually transmit HIV.
To date, the CDC has taken a cautionary view of Hirschel’s assertion. The CDC issued a statement that said, “There are no scientific data that the risk of transmission is zero. The CDC underscores its recommendations that all sexually active people with HIV use condoms consistently and correctly with all sex partners.” While this is reasonable, I hope the CDC recognizes the potential significance of rendering the HIV community non-infectious and makes a commitment to further research whether Hirschel is correct and, if so, then quickly integrate his findings into prevention approaches.
Renowned HIV public health experts such as Ronald Stahl, PhD, MPH, and Julio Montaner, MD, FRCPC, FCCP, are talking about prevention strategies based on reducing the community viral load by identifying and treating effectively the greatest portion of HIV-positive people possible (keeping in mind that HIV treatment is not necessarily indicated for every HIV-positive person).
They believe that the more HIV-positive people who are effectively treated within a community, the less likely it is for new HIV transmissions to occur. This is a viable and important approach that does not depend on Hirschel’s assertion being 100 percent true in every instance. There is ample evidence that HIV-positive people with low or undetectable viral loads are at the least much less infectious, if not entirely so, therefore reducing the odds that they will spread the virus, even if they don’t disclose or practice safe sex.
The concept of reducing a community’s viral load in order to reduce transmission is an intriguing concept that already has some scientific support from a study of HIV-positive and negative people in British Columbia. Its more generalized success in other communities and other countries depends upon effectively treating the greatest proportion of HIV-positive people possible.
The World Health Organization (WHO) just published an analysis that suggests that in countries such as South Africa, where the virus is rampant, widespread HIV screening—coupled with immediate treatment for those who test positive—could “rapidly reduce transmission to the point where elimination might be feasible.” A paper recently published in the British Medical Journal The Lancet reported that most HIV-positive South Africans are unaware of their status and that fewer than half of those who should be getting treatment under current guidelines are receiving it. The report claims: “If annual, voluntary HIV testing for everyone 15 [years of age] and older were started immediately and drug treatment initiated for those who tested positive, transmission [rate] would plummet to less than one new case per 1,000 people in less than a decade. Currently, 15 people per 1,000 are newly infected with HIV every year in South Africa.” Implicit in this WHO analysis is the assumption that effectively treated HIV positive people are at least minimally sexually infectious or sexually noninfectious.
There is an important caveat to the approach of “treatment as prevention.” Currently, it is not medically advised that every single HIV-positive person be placed on treatment. Many patients with high CD4 cell counts remain healthy for years—sometimes even for decades—without treatment. It needs to be shown that the communal benefit of earlier treatment in many patients who wouldn’t currently be advised to start treatment under current treatment guidelines outweighs the toxicity of the medications in individual patients.
I believe as we continue to learn more about drug toxicity and how to prevent it and manage it when it occurs, our insight will allow us to explore earlier treatment for more HIV-positive people. That will have the secondary benefit of reducing the community’s viral load and the incidence of people who newly acquire HIV. Some of the new drugs that are helping overcome the problem of drug resistance appear in clinical practice to be less toxic and better tolerated than older drugs.
Drug toxicity is not the only factor that can reduce the number of people on treatment. Poverty, discrimination, lack of resources and inefficient use of health care resources can and do limit our ability to best treat our patients. In addition, as I mentioned before, so does an atmosphere of blame, shame and fear.
I strongly believe that we will see a change in the way people view those living with HIV once the general public understands that HIV-positive people are not intrinsically infectious and that almost every HIV-positive person can be treated effectively and thus be noninfectious or at least minimally infectious. The notion of HIV-positive people being “clean and safe”—in other words, “noninfectious”—can be used as a powerful tool to destigmatize the disease and HIV-positive people once and for all.
Historically, HIV-positive men and women have been marginalized, stigmatized and even actively discriminated against in society. This impedes the ability of HIV-positive women and men to achieve the “dream of our founding fathers” as President-elect Barack Obama so eloquently put it. People living with HIV have experienced misery, social isolation, fear, blame and shame. Although progress has been made in educating the public about HIV/AIDS, ignorant and hurtful ideas persist. I believe that by reviewing and understanding how such outdated and wrong ideas arose historically we can help put them where they belong—in the past.
The first term used to describe HIV/AIDS when it first was recognized in 1980–81 was GRID for Gay-Related Immune Deficiency. At that time it was not yet known how GRID was transmitted, but it was indelibly imprinted in the minds of the American public that it was “gay related.”
Although it seemed early on to be most clearly linked to gay sex, some people were afraid that even coming into casual contact with a gay person might put them at risk. In addition, the link to gay sex itself would prove to be highly prejudicial coming at a time when the American public, due to gay liberation in the late ’60s through the late ’70s, was just awakening to the awareness of our diversity including our many gay, lesbian, bisexual and transgendered members.
Unfortunately, the appearance of GRID in the early ’80s would reinforce negative stereotypes about gay men and gay sex, including but not limited to the idea that sex between men was some how immoral or even that it intrinsically caused GRID.
It was just a short step from that view to the idea that gay men were to blame for the disease itself. In addition, even when the specific cause of GRID was identified and the modes of transmission better understood, the fears of the American public were constantly stoked, leading many to worry that homosexual men would ignite an epidemic of heterosexual AIDS.
Around that time it was realized that GRID did not only occur in gay men. In fact, it was next given a new name or at least a new acronym in the medical profession. It was called “the 4 Hs” or derisively “the 4 H club.” Each of the four Hs stood for a risk group: homosexuals, heroin addicts, Haitians and hemophiliacs. The scarlet letter was an H.
The general public was afraid of people who could be identified as belonging to one of these H groups who were marginalized and discriminated against even before the AIDS epidemic. Simply put “regular” people were terrified they could themselves contract AIDS by associating with these people in the at-risk groups.
In 1984 the HIV virus was identified and the means of transmission was more clearly defined as being sexually transmitted or transmitted by blood contact by a transfusion or a shared needle. A blood test known as an HIV antibody test could tell who had been exposed to the HIV virus. It was widely assumed that exposure to HIV meant that AIDS, if not already present, would soon develop. Regular people were relieved somewhat but were still terrified of associating with HIV-positive people or even people who could be identified as a member of one of the at risk H groups.
Today in America an increasing number of new HIV infections are occurring in another at risk group: women, particularly minority women who lack access to health care and for whom an HIV-positive status is highly stigmatizing. In fact a recent Harris survey (sponsored by the Foundation for AIDS Research, amfAR) of the attitudes of Americans toward HIV-positive women shows a shocking level of ignorance including the idea that HIV-positive women somehow did bad things to become HIV positive. Indeed the ignorant attitudes regarding HIV-positive women today are quite similar to the attitudes towards gay men in the early ’80s.
It is time to correct broadly held misconceptions. For example, the Harris survey also revealed that the majority (86 percent) of the American public believes that HIV-positive women should not have children. More Americans believed that women with schizophrenia or the congenital condition Down’s syndrome were more fit to be mothers than HIV-positive women. In fact HIV-positive women who receive medical care are quite capable of giving birth to healthy children, and they can expect to be capable and healthy mothers who can expect to live to be grandmothers.
It’s time to leave behind these stigmas, prejudices and taboos associated with HIV and replace them with a clear understanding of what it means to be an HIV-positive person in 2008.
With proper medical therapy, HIV-positive people can almost always be prevented from developing AIDS. It is crucial that the public understand that when someone is “HIV-positive” it does not mean he or she has AIDS. AIDS signifies a severe level of immune deficiency that usually only develops today in HIV-positive people who do not get timely and/or proper medical care. The public must understand that AIDS itself can often be effectively treated and that AIDS patients with treatment can usually become healthier HIV-positive people who no longer have AIDS. The public must also understand, however, that some HIV-positive people do have AIDS and that they require ongoing public support and services.
The significant advances we are seeing for people living with HIV should and must continue to translate into better understanding about what it means to be HIV-positive and into better lives for HIV-positive people. Progress in treatment for HIV should inform the way we approach prevention and change the general public’s view about people living with the virus for the better. Progress should also enable HIV-positive men and women to more participate as fully empowered and respected participants in society—in the workplace, in their families and in their love lives. Progress for HIV-positive people is good news for HIV-negative people in our society as well.
Using the term “HIV infected” to describe an HIV-positive person has become be embedded in our language in a way that fosters prejudice and shapes how people think and feel. “Infected” as in “HIV infected” conjures the word “infectious” and that associates to a threat to others and for others a danger to them. Some people in society are still afraid of HIV-positive people, and it is no wonder that when HIV-positive people sense that fear they suffer devastating emotional and life consequences.
Humans are very sensitive to how we are perceived by others and sometimes shut down all together when we sense moral judgment, criticism and fear. We are also sensitive to other’s feelings and often need to protect others from our own truths. As an example, I have observed that some of my HIV-positive patients are afraid to tell family members about their HIV status to protect their loved ones from what they fear will be emotional suffering as a consequence of that disclosure. The result of this sensitivity when it blocks communication is that it, ironically, can increase everyone’s suffering.
People have both a conscious and an unconscious mind. At times, we may seem to be consciously managing to be okay, but inside we may be hurting. It requires a lot of loving support at an individual as well as on community and cultural levels to heal this kind of hurt.
From my vantage point as a physician who is privileged to care for and get to know many HIV-positive men and women, I have observed that a diagnosis of HIV is, for almost every one of my patients, a trauma to their individual psyches and a shock to their souls. It is a shock than can have after shocks, and the trauma caused by hearing you are HIV-positive can compound challenges and traumas that pre-date an HIV diagnosis. Obviously the impact of this trauma differs from person to person.
I have found that the time at which a person was first diagnosed as HIV positive is connected to the impact of that news. HIV-positive people diagnosed before 1996 when HAART first became available are likely to be more impacted by the fear of illness and death than a person diagnosed more recently. Greater knowledge about current advances in HIV treatment also helps considerably. But even well-informed, newly diagnosed HIV-positive people with a prognosis for excellent health can be greatly impacted by the fear of getting sick—perhaps to a greater degree than they might be consciously aware of.
Before HAART, an HIV diagnosis was traumatizing because of its very real and potential devastating consequences of illness and death. When a lack of treatment options meant than a diagnosis of HIV often led to a premature death, even belonging to a high risk group for HIV—even in the absence of a test result—was equally terrifying and traumatizing.
Reducing the trauma of an HIV diagnosis is another key component in our being able to successfully stop AIDS.
Trauma is when it’s so bad that one can’t be present in the experience of it. Coping mechanism such as shutting down emotionally, chronic anxiety and alcohol and drug abuse arise in an attempt to escape its impact. It is highly traumatizing to believe as a consequence of being HIV positive one is at some level a threat to others and for others a danger to them. It’s why social support, individual help and education at an individual and societal level about HIV are so important to heal that wound.
In fact HIV-positive people only place negative people at risk for HIV as a result of specific unsafe sexual practices or a sharing of drug paraphernalia. This most often occurs today as it did 20 years ago due to psychological distress and poor choices made in an atmosphere of fear, stigma and marginalization that inhibits the discussion and disclosure necessary for risk reduction.
I believe what is most of all necessary to prevent new HIV infections is an atmosphere of concern, respect and inclusion that facilitates discussion, disclosure and importantly HIV testing that includes real education and fully informed consent. Many HIV-positive who transmit HIV do not even know that they are HIV positive and/or do not seek the appropriate medical treatment.
Recently a well-known writer on HIV and gay-related issues told me that one of my colleagues, a well-regarded and excellent HIV doctor, told him that when he sees new HIV positive gay patients today he chastises them for not being more careful. If so, I disagree with his approach to the clinical counseling of a newly diagnosed HIV-positive person. My approach would be to be supportive and understanding. Ironically, I have observed that recently infected HIV-positive patients already feel somehow to blame for their HIV diagnosis. My goal is to help them move past the self-blame and shame that can often lead to depression and/or chronic anxiety in newly diagnosed people. But the experience of my patients resonates with the general sentiment in our society as reported by the Harris survey cited earlier.
Our current public health authorities can do more to identify and address stigma as a driving factor in the incidence of new infections and in reducing the quality of life of HIV-positive people. The stigmatization of HIV-positive people comes from the combination of all these wrong ideas—that HIV-positive people did bad things to get infected, are somehow to blame for being HIV positive and threaten to infect other currently HIV negative people.
In this mix of ignorance and fear are misconceptions and prejudices about gay sexuality and sexuality in general. They are part of the American cultural landscape and thus part of the psychological reality conscious and unconscious of HIV-positive and HIV-negative people.
Public health authorities can advantageously use the news that significant progress has been made in HIV treatment and that HIV-positive people on effective treatment may be sexually noninfectious or at the least much less infectious. This could serve as an unprecedented opportunity to educate and re-educate the general public in America and globally about the reality of HIV.
Of note is the fact that 27 years into the global HIV epidemic and 12 years after effective treatment was first available for many HIV positive people neither the CDC nor NIH has completed a study to see whether it is true that HIV-positive people on effective treatment are sexually non infectious.
The NIH has just begun a study designed to determine how immediate treatment for HIV patients with HIV-negative partners affects both the risk of transmission and the health of the HIV-positive partner. The study is scheduled to run through 2014. According to the doctor leading the study, it may provide the clearest answer to the question at the center of debate: Can we treat our way out of the epidemic?
I am glad the NIH is finally conducting this well designed study—something it should have done long ago. But five years seems a long time to answer a question that I believe we should have learned a long time ago. It seems likely that the answer to the question of whether or not we can treat our way out of the epidemic is almost certainly yes. The better and more difficult to answer questions are: Will we treat our way out of the epidemic. And if not, why not? I hope another five years are not wasted until the studies results are available to more aggressively implement a more comprehensive strategy.
Recent research has suggested that some HIV-positive men who consistently have undetectable viral loads in their blood may have detectable virus in their semen. Detectable virus in the semen may indicate that these men are potentially sexually infectious. This would mean that some men who might be considered sexually noninfectious on a blood test may indeed be sexually infectious.
One study reported that 5 percent of men who had undetectable viral loads had detectable virus in their semen at least on one of several occasions measured. Another fascinating study reported that some HIV drugs poorly cross the blood testis barrier and some drugs cross it well. So it may be necessary to be on certain HIV drugs or drug cocktails to eliminate HIV from the semen. It seems to me in any case that while the bar may have to be raised to include an undetectable virus in the semen to declare someone sexually noninfectious the concept remains sound. Similar studies of course need to be performed in women to assess sexual infectiousness.
In my own clinical practice in Greenwich Village, I have seen in the past several years a number of gay men as new patients who had recently tested positive despite attempting to adhere consistently to current safe-sex recommendations. In fact, the only risk factor for a number these individuals, some of whom had never engaged in protected or unprotected anal sex, was unprotected oral sex. Oral sex is categorized as safer sex. It is advised that condoms be used for oral sex, but in practice that safe-sex recommendation is rarely adhered to.
What I found interesting and potentially relevant to the task of preventing new HIV infections is that these individuals who recently tested HIV positive engaging in oral sex rarely if ever inquired about their prospective partner’s HIV status or, if positive, their therapy status. Although it has not been conclusively demonstrated, it is likely that oral sex between an HIV-positive man on fully suppressive ARV therapy indeed carries with it a negligible risk of HIV transmission. It is likely that an HIV-negative man faces a much greater risk with an HIV-positive man either not on treatment at all or not on a fully effective treatment. An HIV-negative man also faces a much greater risk with a man who may self report as HIV negative but who may not have been tested recently enough to know conclusively that he is HIV negative.
There seems to be a “don’t ask, don’t tell” ethos among men who have sex with men (MSM) in New York in which each person is responsible to fend for himself according to his situation and comfort level—which is essentially what current safe-sex recommendations instruct. I believe some of the difficulty that MSM experience in having more frank talk about their health situations and concerns stems from the fears and stigmas that date from the epidemic’s beginning and persist today. A number of my patients have told me this indeed is their own experience.
I believe that if today’s atmosphere encouraged a more frank “do ask, do tell” discussion of HIV in terms of testing and treatment, it would prevent new infections. If for example my patient learned that a prospective partner was HIV positive and not on treatment or not on fully effective treatment or if not tested recently enough to be sure of his or her status then the patient might have avoided unprotected oral sex with that partner and consequently not become HIV positive.
Many public health authorities have suggested that people will misunderstand the idea that HIV people on effective treatment are sexually noninfectious and will relax safe-sex precautions, leading to new infections. I strongly disagree with this approach. It cynically maintains the current atmosphere of misinformation and mistrust even at a scientific public health level in order to “protect” the public from the consequences of the truth. Why not give people real prevention tools that depend on real knowledge of how HIV is transmitted rather than take those tools away from them?
In summary, destigmatizing HIV-positive people is crucial to the tasks of reducing the number of new people becoming HIV positive as well as properly diagnosing and more effectively treating HIV-positive people. Meeting this challenge will help both HIV-positive people and HIV-negative people get better access to treatment and prevention.
Imagine a public health leadership that undertook to truly educate the public about HIV-positive people, including the HIV-positive members of the public. Imagine the benefit for HIV-positive people and the public at large if HIV were destigmatized. Imagine the consequences for the developing world if we could export a true public health understanding about HIV to developing countries along with lifesaving medications!
Let’s develop a public health campaign involving a joint effort of the medical profession, public health officials, government, industry, media, foundations, clergy and, most of all, the community of HIV-positive people to destigmatize HIV in our society and empower HIV-positive people once and for all.
Saturday, August 11, 2007
Why No Recent Post?
Between work, running LifeLine and now shutting down LifeLine, things have just been plain busy. When you spend 8 hours a day on a computer at work (mortgage, truck payment, and food are somewhat critical for one's survival), stop by the thrift store after work to handle client service requests, then come home to do non-profit work on the computer, manage several community websites as a volunteer, and spend some necessary time on my one paid website, the rest of your "free time" is most certainly NOT spent on the computer.
I am currently on a sabbatical from the GLBT community... being rather disappointed in the lack of assistance from the remaining board members of LifeLine. Everyone just walked away and left it up to me to deal with. I've learned some valuable lessons during this time, and am going to work very hard not to repeat them. I hope there are folks who have started work on World AIDS Day 2007 for Salem, but unfortunately I haven't heard about any plans.
Healthwise, had a scare a couple of months back after a lovely outpatient procedure. Some precancerous polyps were removed, and as a result I get to experience a lovely outpatient procedure once a year for the next several years, if not longer. Had a rough time with kidney stones last year, who returned for a reunion 2 weeks ago. As a result of the CT scan, docs found 3 cysts that also had to be dealt with. Every experienced a shot of cortisone? How about 3 shots? Try 6 needles... one to drain, and one for cortisone. You get the picture. Let me tell you... it hurt like a son of a bitch.
Quarterly lab work still is a wonderful thing... zero viral load and CD4s in the 900s. An obvious improvement from 162 back in 1996. Lipoatrophy is holding steady, although I miss my chubby cheeks... both sets! One major concern is how I will handle work, or more accurately, coworkers, if the lipo gets much worse. I will cross that bridge when, or if, needed. Researchers now know that Zerit (d4T) and Retrovir (AZT) cause lipoatrophy due to damage of the mitochondria at the cellular level. I was on Zerit for many years, while before and after Zerit, I was on Retrovir for shorter periods of time. Haven't been on Retrovir for over a year since I asked my doc to switch from Trizivir (Retrovir, Epivir, Abacavir) to Epzicom (Epivir, Abacavir). The trade off was starting Viread (Tenofovir). Current combo is Reyataz (Atazanavir), Viread, and Epzicom, for a total of a four med combo. 3 pills once a day, compared to the 18+ back in the late 90s. I do have one question though... who in the hell makes up med names? Some linguistic freak? Or possibly an English major with a twisted sense of humor?
Hoping to be able to finish some gardenyard projects before the rainy season starts in late October or November. Once it starts, it will rain until January or February. Welcome to the Pacific Northwest...
So there's an update, although it may be considered TMI for some. Take care and peace out!
Thursday, October 12, 2006
Two Cows
DEMOCRATIC
You have two cows.
Your neighbor has none.
You feel guilty for being successful.
Barbara Streisand sings for you.
REPUBLICAN
You have two cows.
Your neighbor has none.
So?
SOCIALIST
You have two cows.
The government takes one and gives it to your neighbor.
You form a cooperative to tell him how to manage his cow.
COMMUNIST
You have two cows.
The government seizes both and provides you with milk.
You wait in line for hours to get it.
It is expensive and sour.
CAPITALISM, AMERICAN STYLE
You have two cows.
You sell one, buy a bull, and build a herd of cows.
BUREAUCRACY, AMERICAN STYLE
You have two cows.
Under the new farm program the government pays you to shoot one, milk the other, and then pours the milk down the drain.
AMERICAN CORPORATION
You have two cows.
You sell one, lease it back to yourself and do an IPO on the 2nd one.
You force the two cows to produce the milk of four cows. You are surprised when one cow drops dead. You spin an announcement to the analysts stating you have downsized and are reducing expenses.
Your stock goes up.
FRENCH CORPORATION
You have two cows.
You go on strike because you want three cows.
You go to lunch and drink wine.
Life is good.
JAPANESE CORPORATION
You have two cows.
You redesign them so they are one-tenth the size of an ordinary cow and produce twenty times the milk.
They learn to travel on unbelievably crowded trains.
Most are at the top of their class at cow school.
GERMAN CORPORATION
You have two cows.
You engineer them so they are all blond, drink lots of beer, give excellent quality milk, and run a hundred miles an hour.
Unfortunately they also demand 13 weeks of vacation per year.
ITALIAN CORPORATION
You have two cows but you don't know where they are.
While ambling around, you see a beautiful woman.
You break for lunch.
Life is good.
RUSSIAN CORPORATION
You have two cows.
You have some vodka.
You count them and learn you have five cows.
You have some more vodka.
You count them again and learn you have 42 cows.
The Mafia shows up and takes over however many cows you really have.
TALIBAN CORPORATION
You have all the cows in Afghanistan , which are two.
You don't milk them because you cannot touch any creature's private parts.
You get a $40 million grant from the US government to find alternatives to milk production but use the money to buy weapons.
IRAQI CORPORATION
You have two cows.
They go into hiding.
They send radio tapes of their mooing.
POLISH CORPORATION
You have two bulls.
Employees are regularly maimed and killed attempting to milk them.
BELGIAN CORPORATION
You have one cow.
The cow is schizophrenic.
Sometimes the cow thinks he's French, other times he's Flemish.
The Flemish cow won't share with the French cow.
The French cow wants control of the Flemish cow's milk.
The cow asks permission to be cut in half.
The cow dies happy.
FLORIDA CORPORATION
You have a black cow and a brown cow.
Everyone votes for the best looking one.
Some of the people who actually like the brown one best accidentally vote for the black one.
Some people vote for both.
Some people vote for neither.
Some people can't figure out how to vote at all.
Finally, a bunch of guys from out-of-state tell you which one you think is the best-looking cow.
CALIFORNIA CORPORATION
You have millions of cows.
They make real California cheese.
Only five speak English.
Most are illegals.
Arnold likes the ones with the big udders.
Friday, June 30, 2006
The Four Agreements
The Four Agreements
don Miguel Ruiz, M.D.
Based on ancient Toltec wisdom, the Four Agreements offer a powerful code of conduct that can rapidly transform our lives and our work into a new experience of effectiveness, balance and self supporting behavior. Everything we do is based on agreements we have made. In these
agreements we tell ourselves who we are, what everyone else is, how to act, what is possible and what is impossible. What we have agreed to believe creates what we experience. When these agreements come from fear obstacles develop keeping us from realizing our greatest potential.
BE IMPECCABLE WITH YOUR WORD
Speak with integrity. Say only what you mean. Avoid using the word to speak against yourself or to gossip about others. Use the power of your word in the direction of truth and love.
DON'T TAKE ANYTHING PERSONALLY
Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream. When you are immune to the opinions and actions of others, you won't be the victim of needless suffering.
DON'T MAKE ASSUMPTIONS
Find the courage to ask questions and to express what you really want. Communicate with others as clearly as you can to avoid misunderstandings, sadness, and drama. With just this one agreement, you can completely transform your life.
ALWAYS DO YOUR BEST
Your best is going to change from moment to moment; it will be different when you are healthy as opposed to sick. Under any circumstance, simply do your best, and you will avoid self-judgment, self-abuse, and regret.
Wednesday, June 28, 2006
Under the Milky Way
"Under the Milky Way"
The Church
Sometimes when this place gets kind of empty
Sound of their breath fades with the light
I think about the loveless fascination
Under the Milky Way tonight
Lower the curtain down on Memphis
Lower the curtain down all right
I got no time for private consultation
Under the Milky Way tonight
CHORUS:
Wish I knew what you were looking for
Might have known what you would find
Wish I knew what you were looking for
Might have known what you would find
And it's something quite peculiar
Something shimmering and white
Leads you here despite your destination
Under the Milky Way tonight
CHORUS:
Under the Milky way tonight..
Under the Milky Way tonight...
Wednesday, May 24, 2006
PBS Special - Frontline - The Age of AIDS
The Age of AIDS
Part 1, Tuesday, May 30, 2006. In Oregon on OPB, Channel 10, 9pm.
Part 2, Wednesday, May 31, 2006. In Oregon on OPB, Channel 10, 9pm.
On the 25th anniversary of the first diagnosed cases of AIDS, FRONTLINE examines one of the worst pandemics the world has ever known in The Age of AIDS, airing Tuesday and Wednesday, May 30 and 31, from 9 to 11 pm ET on PBS (check local listings). After a quarter-century of political denial and social stigma, of stunning scientific breakthroughs, bitter policy battles and inadequate prevention campaigns, HIV/AIDS continues to spread rapidly throughout much of the world. Through interviews with AIDS researchers, world leaders, activists, and patients, FRONTLINE investigates the science, politics, and human cost of this fateful disease and asks: What are the lessons of the past, and what can be done to stop AIDS?
Wednesday, May 10, 2006
How AIDS Changed America - Newsweek, May 15, 2006 Issue
How AIDS Changed America
The plague years: It brought out the worst in us at first, but ultimately it brought out the best, and transformed the nation. The story of a disease that left an indelible mark on our history, our culture and our souls.
By David Jefferson
Newsweek
May 15, 2006 issue - Jeanne White-Ginder sits at home, assembling a scrapbook about her son, Ryan. She pastes in newspaper stories about his fight to return to the Indiana middle school that barred him in 1985 for having AIDS. She sorts through photos of Ryan with Elton John, Greg Louganis and others who championed his cause. She organizes mementos from his PBS special, "I Have AIDS: A Teenager's Story." "I just got done with his funeral. Eight pages. That was very hard," says White-Ginder, who buried her 18-year-old son in 1990, five-and-a-half years after he was diagnosed with the disease, which he contracted through a blood product used to treat hemophiliacs. The scrapbook, along with Ryan's bedroom, the way his mother left it when he died, will be part of an exhibit at the Children's Museum of Indianapolis on three children who changed history: Anne Frank. Ruby Bridges. And Ryan White. "He put a face to the epidemic, so people could care about people with AIDS," his mother says.
At a time when the mere threat of avian flu or SARS can set off a coast-to-coast panic-and prompt the federal government to draw up contingency plans and stockpile medicines-it's hard to imagine that the national response to the emergence of AIDS ranged from indifference to
hostility. But that's exactly what happened when gay men in 1981 began dying of a strange array of opportunistic infections. President Ronald Reagan didn't discuss AIDS in a public forum until a press conference four years into the epidemic, by which time more than 12,000 Americans had already died. (He didn't publicly utter the term "AIDS" until 1987.) People with the disease were routinely evicted from their homes, fired from jobs and denied health insurance. Gays were demonized by the extreme right wing: Reagan adviser Pat Buchanan editorialized in 1983, "The poor homosexuals - they have declared war against nature, and now nature is exacting an awful retribution." In much of the rest of the culture, AIDS was simply treated as the punch line to a tasteless joke: "I just heard the Statue of Liberty has AIDS," Bob Hope quipped during the rededication ceremony of the statue in 1986. "Nobody knows if she got it from the mouth of the Hudson or the Staten Island Fairy." Across the river in Manhattan, a generation of young adults was attending more funerals than weddings.
As AIDS made its death march across the nation, killing more Americans than every conflict from World War II through Iraq, it left an indelible mark on our history and culture. It changed so many things in so many ways, from how the media portray homosexuality to how cancer patients deal with their disease. At the same time, AIDS itself changed, from a disease that killed gay men and drug addicts to a global scourge that has decimated the African continent, cut a large swath through black America and infected almost as many women as men worldwide. The death toll to date: 25 million and counting. Through the crucible of AIDS, America was forced to face its fears and prejudices-fears that denied Ryan White a seat in school for a year and a half, prejudices that had customers boycotting restaurants with gay chefs. "At first, a ton of people said that whoever gets AIDS deserves to have AIDS, deserves to literally suffer all the physical pain that the virus carries with it," says Tom Hanks, who won an Oscar for playing a gay lawyer dying of the disease in 1993's "Philadelphia." "But that didn't hold." Watching a generation of gay men wither and die, the nation came to acknowledge the humanity of a community it had mostly ignored and reviled. "AIDS was the great unifier," says Craig Thompson, executive director of AIDS Project Los Angeles and HIV-positive for 25 years.
Without AIDS, and the activism and consciousness-raising that accompanied it, would gay marriage even be up for debate today? Would we be welcoming "Will & Grace" into our living rooms or weeping over "Brokeback Mountain"? Without red ribbons, first worn in 1991 to promote AIDS awareness, would we be donning rubber yellow bracelets to show our support for cancer research? And without the experience of battling AIDS, would scientists have the strategies and technologies to develop the antiviral drugs we'll need to battle microbial killers yet to emerge?
AIDS, of course, did happen. "Don't you dare tell me there's any good news in this," says Larry Kramer, who has been raging against the disease-and those who let it spread unchecked-since it was first identified in 1981. "We should be having a national day of mourning!" True. But as we try to comprehend the carnage, it's impossible not to acknowledge the displays of strength, compassion and, yes, love, that were a direct result of all that pain and loss. Without AIDS, we wouldn't have the degree of patient activism we see today among people with breast cancer, lymphoma, ALS and other life-threatening diseases. It was Kramer, after all, who organized 10,000 frustrated AIDS patients into ACT UP, a street army chanting "Silence equals death" that marched on the White House and shut down Wall Street, demanding more government funding for research and quicker access to drugs that might save lives. "The only thing that makes people fight is fear. That's what we discovered about AIDS activism," Kramer says.
Fear can mobilize, but it can also paralyze-which is what AIDS did when it first appeared. And no one-not the government, not the media, not the gay community itself-reacted fast enough to head off disaster. In the fiscally and socially conservative climate of Reagan's America, politicians were loath to fund research into a new pathogen that was killing mostly gay men and intravenous drug users. "In the first years of AIDS, I imagine we felt like the folks on the rooftops during Katrina, waiting for help," says Dr. Michael Gottlieb, the Los Angeles immunologist credited as the first doctor to recognize the looming epidemic. When epidemiologist Donald Francis of the federal Centers for Disease Control in Atlanta tried to get $30 million in funding for an AIDS-prevention campaign, "it went up to Washington and they said f--- off," says Francis, who quit the CDC soon after, defeated.
"Gay Cancer," as it was referred to at the time, wasn't a story the press wanted to cover-especially since it required a discussion of gay sex. While the media had a field day with Legionnaire's disease, toxic shock syndrome and the Tylenol scare, few outlets paid much attention to the new syndrome, even after scores of people had died. The New York Times ran fewer than a dozen stories about the new killer in 1981 and 1982, almost all of them buried inside the paper. (NEWSWEEK, for that matter, didn't run its first cover story on what "may be the public-health threat of the century" until April 1983.) The Wall Street Journal first reported on the disease only after it had spread to heterosexuals: NEW, OFTEN-FATAL ILLNESS IN HOMOSEXUALS TURNS UP IN WOMEN, HETEROSEXUAL MALES, read the February 1982 headline. Even the gay press missed the story at first: afraid of alarming the community and inflaming antigay forces, editors at the New York Native slapped the headline DISEASE RUMORS LARGELY UNFOUNDED atop the very first press report about the syndrome, which ran May 18, 1981. There were a few notable exceptions, particularly the work of the late Randy Shilts, an openly gay journalist who convinced his editors at the San Francisco Chronicle to let him cover AIDS as a full-time beat: that reporting led to the landmark 1987 book "And the Band Played On," a detailed account of how the nation's failure to take AIDS seriously allowed the disease to spread exponentially in the early '80s.
Many gay men were slow to recognize the time bomb in their midst, even as people around them were being hospitalized with strange, purplish skin cancers and life-threatening pneumonia. Kramer and his friends tried to raise money for research during the 1981 Labor Day weekend in The Pines, a popular gay vacation spot on New York's Fire Island. "When we opened the collection boxes, we could not believe how truly awful the results were," says Kramer. The total? $769.55. "People thought we were a bunch of creeps with our GIVE TO GAY CANCER signs, raining on the parade of Pines' holiday festivities." The denial in some corners of the gay community would continue for years. Many were reluctant to give up the sexual liberation they believed they'd earned: as late as 1984, the community was bitterly debating whether to close San Francisco's gay bathhouses, where men were having unprotected sex with any number of partners in a single night.
With death a constant companion, the gay community sobered up from the party that was the '70s and rose to meet the unprecedented challenge of AIDS. There was no other choice, really: they had been abandoned by the nation, left to fend for themselves. "It's important to remember that there was a time when people did not want to use the same bathroom as a person with AIDS, when cabdrivers didn't want to pick up patients who had the disease, when hospitals put signs on patients' doors that said WARNING. DO NOT ENTER," recalls Marjorie Hill, executive director of Gay Men's Health Crisis in New York. Organizations like GMHC sprang up around the country to provide HIV patients with everything from medical care to counseling to food and housing. "Out of whole cloth, and without experience, we built a healthcare system that was affordable, effective and humane," says Darrel Cummings, chief of staff of the Los Angeles Gay & Lesbian Center. "I can't believe our community did what it did while so many people were dying." Patients took a hands-on approach to managing their disease, learning the intricacies of T-cell counts and grilling their doctors about treatment options. And they shared what they learned with one another. "There's something that a person with a disease can only get from another person with that disease. It's support and information and inspiration," says Sean Strub, who founded the magazine Poz for HIV-positive readers.
It took a movie star to get the rest of the nation's attention. In the summer of 1985, the world learned that Rock Hudson-the romantic leading man who'd been a symbol of American virility-was not only gay, but had full-blown AIDS. "It was a bombshell event," says Gottlieb, who remembers standing on the helipad at UCLA Medical Center, waiting for his celebrity patient to arrive, as news helicopters circled overhead. "For many Americans, it was their first awareness at all of AIDS. This prominent man had been diagnosed, and the image of him looking as sick as he did really stuck." Six years later, basketball legend Magic Johnson announced he was HIV-positive, and the shock waves were even bigger. A straight, healthy-looking superstar athlete had contracted the "gay" disease. "It can happen to anybody, even me, Magic Johnson," the 32-year-old announced to a stunned nation, as he urged Americans to practice safe sex.
Given the tremendous stigma, most well-known public figures with AIDS tried to keep their condition a secret. Actor Brad Davis, the star of "Midnight Express," kept his diagnosis hidden for six years, until he died in 1991. "He assumed, and I think rightly so, that he wouldn't be able to find work," says his widow, Susan Bluestein, a Hollywood casting director. After Davis died, rumors flew that he must have been secretly gay. "That part of the gossip mill was the most hurtful to me and my daughter," says Bluestein, who acknowledges in her book "After Midnight" that her husband was a drug addict and unfaithful-but not gay.
With the disease afflicting so many of their own, celebrities were quick to lend support and raise money. Elizabeth Taylor was among the first, taking her friend Rock Hudson's hand in public, before the TV cameras and the world, to dispel the notion that AIDS was something you could catch through casual contact. Her gesture seems quaint today, but in 1985-when the tabloids were awash with speculation that Hudson could have infected actress Linda Evans by simply kissing her during a love scene in "Dynasty"-Taylor's gesture was revolutionary. She became the celebrity face of the American Foundation for AIDS Research. "I've lost so many friends," Taylor says. "I have so many friends who are HIV-positive and you just wonder how long it's going to be. And it breaks your heart."
Behind the scenes, Hollywood wasn't nearly as progressive as it likes to appear. John Erman recalls the uphill battle getting the 1985 AIDS drama, "An Early Frost," on TV. "The meetings we had with NBC's Standards and Practices [the network's censors] were absolutely medieval," says Erman. One of the censors' demands: that the boyfriend of the main character be portrayed as "a bad guy" for infecting him: "They did not want to show a positive gay relationship," Erman recalls. Ultimately, with the support of the late NBC Entertainment president Brandon Tartikoff, Erman got to make the picture he wanted-though major advertisers refused to buy commercial time during the broadcast. Within a decade, AIDS had changed the face of television. In 1991, "thirtysomething" featured a gay character who'd contracted the disease. And in 1994, on MTV's "The Real World," 23-year-old Pedro Zamora, who died later that same year, taught a generation of young people what it meant to be HIV-positive.
If TV was slow to deal with AIDS, cinema was downright glacial. "Longtime Companion," the first feature film about the disease, didn't make it to the screen until 1990, nine years into the epidemic. "There was a lot of talk before the movie came out about how this was going to hurt my career, the same way there was talk about Heath Ledger in 'Brokeback Mountain'," says Bruce Davison, who received an Oscar nomination for his role. As for "Philadelphia," Hanks is the first to admit "it was late to the game."
Broadway was the major exception when it came to taking on AIDS as subject matter-in part because so many early casualties came from the world of theater. "I remember in 1982 sitting in a restaurant with seven friends of mine. All were gay men either working or looking to work in the theater, and we were talking about AIDS," recalls Tom Viola, executive director of Broadway Cares/Equity Fights AIDS. "Of those eight guys, four are dead, and two, including myself, are HIV-positive." By the time Tony Kushner's Pulitzer Prize-winning "Angels in America" made its Broadway debut in 1993, some 60 plays about the disease had opened in New York. Producer Jeffrey Seller remembers how he was told he "could never do a show on Broadway that's about, quote unquote, AIDS, homosexuality and drug addiction." He's talking about "Rent," which a decade later still draws capacity crowds.
The world of "Rent" is something of an artifact now. Just before it hit Broadway in 1996, scientists introduced the antiretroviral drug cocktails that have gone on to extend the lives of millions of patients with HIV. Since then, the urgency that once surrounded the AIDS fight in the United States has ebbed, as HIV has come to be seen as a chronic, rather than fatal, condition. But the drugs aren't a panacea-despite the fact that many people too young to remember the funerals of the '80s think the new medications have made it safe to be unsafe. "Everywhere I go, I'm meeting young people who've just found out they've been infected, many with drug-resistant strains of the virus," says Cleve Jones, who two decades ago decided to start stitching a quilt to honor a friend who had died of AIDS. That quilt grew to become an iconic patchwork of more than 40,000 panels, each one the size of a grave, handmade by loved ones to honor their dead. Ever-expanding, it was displayed several times in Washington, transforming the National Mall into what Jones had always intended: a colorful cemetery that would force the country to acknowledge the toll of AIDS. "If I'd have known 20 years ago that in 2006 I'd be watching a whole new generation facing this tragedy, I don't think I would have had the strength to continue," says Jones, whose own HIV infection has grown resistant to treatment.
Inner strength is what has allowed people living with HIV to persevere. "They think I'm gonna die. You know what, they better not hold their breath," Ryan White once told his mother. Though given six months to live when he was diagnosed with HIV, Ryan lived five and a half years, long enough to prod a nation into joining the fight against AIDS. When he died in 1990 at the age of 18, Congress named a new comprehensive AIDS funding act after him. But the real tribute to Ryan has been the ongoing efforts of his mother. "I think the hostility around the epidemic is still there. And because of religious and moral issues, it's been really hard to educate people about this disease and be explicit," says White-Ginder, who continues to give speeches about watching her son live and die of AIDS. "We should not still be facing this disease." Sadly, we are.
