Attached is a pdf version of the presentation "HIV Stigma: A Discussion for Effective Interventions" presented at the 2012 Conference of Social Work and HIV/AIDS held in Miami, Florida.
Download slides here: Download Stigma SW HIV 2012
HIV/AIDS
May 25, 2012
May 23, 2012
STARTING HIV MEDICATIONS: A LIFE-SAVING CHALLENGE
This article was originally posted on TheBody.com on David's blog "Riding the Tiger: Life Lessons from an HIV-positive Therapist"
Gwen was thirty when she found out she was HIV positive, yet this news didn't come as a surprise. She had injected heroin for several years but managed to get clean when she was twenty-eight. Her struggle with drugs was a terrible phase in her young life and had left her with HIV, but those years also had given her a beautiful baby girl whom she totally adored and who, thankfully, did not have the HIV virus.
Gwen now faced a dilemma. Her doctor just told her, based on her recent lab results, that she needed to start HIV medications. While not unexpected, she felt pangs of anxiety at this news. Since getting clean, she had always been determined to create a good life for herself as well as her baby. She worked part-time from her home and attended community college in the evenings. Gwen's only nearby relative, her sister, worked during the day but was able to watch her daughter while she was at class. Gwen's mind began racing. Who would care for her child if the medications made her sick? The lab, the doctor, and her case manager were available only during business hours. Who would watch her baby while she took public transportation to various appointments to get her meds and the follow up labs? How could she afford time away from work? How could she even afford the drugs? She knew there must be some programs to help her obtain them, but she had also heard there were waiting lists for medication assistance.
Starting HIV meds is among the most serious commitments one will ever make. Like Gwen, anyone facing this decision needs to consider numerous factors which will affect their ability to adhere to a daily regimen for the rest of their life. Disruptions cause resistance, which can render a drug ineffective. Fewer medication options increase the risk of dire consequences. More than almost any other, one's relationship with his or her HIV medications is an intensely personal, long-term obligation that, while certainly life-saving, requires consistency, determination, and acceptance of side-effects, both anticipated and unanticipated.
I have been on this road since 1988, and I am most certainly alive only because of these medications. I am fortunate that my body generally tolerates them and I am able to maintain my daily routines, although it has not always been a smooth ride. In the early days, I survived AZT, which was dosed every four hours around the clock and which caused anemia that hospitalized me and killed several friends, including my HIV doctor. In the 1990s, when the situation was far more desperate, I, along with thousands of others, lent my body for drug trials. Despite pancreatitis and permanent neuropathy, I have no regrets because new, life-saving medications became available. And I remember the miracle when protease inhibitors arrived and, despite serious side effects, dramatically reshaped the AIDS epidemic.
Co-existing with our HIV meds has certainly become easier. There are more medication options than ever before, there is an increased understanding of side effects, and drug combinations have greatly improved convenience. But it is critical not to lose awareness of the tenuous balance between the risk and benefit of HIV medications, because despite today's reassuring, carefree, almost casual portrayal of life on HIV meds, taking them remains a serious, life-long commitment with medical, emotional, social, and financial consequences. Because of the nature of this commitment and its significance, anyone starting HIV medications needs to consider several factors. Here are a few:
- Side Effects: I don't know anyone taking HIV meds who doesn't, on occasion, have an accident when they can't get to a bathroom. It challenges one's dignity, but most people find they can adapt with medication and a routine that includes carrying extra underwear (there's even an app for that: several bathroom-finder apps have proven very useful to clients and friends!). Rashes, headaches, and nausea can also occur, often when starting a new drug. Long term effects of HIV medications are now emerging, including liver, cardiac, and metabolic problems, as well as diabetes, high cholesterol/triglycerides, and osteoporosis. Unfortunately, we just don't know the long-term impact of these drugs, but despite these side effects, most people choose to begin HIV meds and work with their doctor to closely monitor their impact not just on HIV but on other physiological systems as well.
- Substance Use: I work with many patients whose substance abuse has particularly devastating consequences on their medication adherence. This is especially true for methamphetamine. Most meth users take the drug over several days, during which genuine commitments (like using condoms or taking one's HIV meds) are abandoned. Some people make heroic, but usually unsuccessful, efforts to take their HIV meds (setting mobile phone alarms, asking friends to prompt them). Others just give up while partying. Recreational drugs can also interact with HIV meds in a variety of ways which can cause a dangerous increase in blood levels (this can lead to an overdose of the recreational drug) or the rapid metabolism of the antiviral, creating an opportunity for mutation. Anyone starting HIV meds needs to seriously consider their recreational drug use and its potential impact on their ability to maintain their medication regimen. HIV meds don't mix well with recreational drugs.
- Drug Interactions: Many HIV medications interact with other prescribed medications and nutritional supplements. It's important for anyone starting meds to understand how they work and their potential interactions. For example, many people use St. John's Wort, an over-the-counter supplement, to treat symptoms of depression. Simultaneous use of this supplement with ritonavir (Norvir) can cause dangerous interactions. Ritonavir, along with many other HIV drugs, causes unexpected increases or decreases in blood levels of other medications, so speaking frankly with your physician about everything you take, including supplements, is essential.
- Mental Health: HIV medications, even if taken only once a day, require consistency and stability. Mood disorders that cause fluctuations in motivation or unpredictable behavior can be a great concern. I have had clients with Bipolar Disorder who stopped taking their mood stabilizers during manic phases and soon stopped taking their HIV medications as well. Depression can be equally debilitating if one loses interest in self-care, including HIV therapy. Others find that taking HIV medications is a disturbing daily reminder of their status. This can be greatly alleviated by identifying and expressing the strong feelings that emerge after diagnosis and reframing taking medications as one more empowering activity we do to suppress the virus. Managing mental health is a critical component of managing HIV.
- Strong Support System: Like Gwen, anyone taking HIV medications needs to maintain a strong and supportive network of friends, family, and professionals. A variety of issues can arise when one might need help, such as experiencing strong physical side effects, needing moral support when things seem overwhelming, or finding assistance accessing the medications or making copayments. Physical health and stigma sometimes isolate people living with HIV, yet no one can manage it by themselves. A robust support system is essential.
- Personal Empowerment: Starting HIV medications, like the initial diagnosis, can be traumatic. Most people can't help but view it as one more step toward the inevitable progression of the virus. It's not unusual to catastrophize, or minimize, or even deny what's happening. I encourage my clients to process these feelings, network with others having the same experience, and find their way toward a personal peace with the virus, a place in which they are empowered to remain actively engaged in maintaining their health.
Starting HIV medications is a big deal, but millions of us have done it and found ways to successfully co-exist with these drugs. It requires investing time to understand the meds, creating a collaborative relationship with your healthcare providers, and taking care of yourself emotionally and physically. But with that effort, one quickly adapts to taking these medications and viewing them as just another critical component of living with HIV.
May 09, 2012
PAIN, DRUGS AND THE RISKS OF SELF-MEDICATION
This article was originally posted on TheBody.com on David's blog "Riding the Tiger: Life Lessons from an HIV-positive Therapist"
Even the bed sheet touching my skin was intolerable. The sharp pain was centered in my toes and had kept me sleepless for three nights in a row. It was the worst neuropathy I had ever experienced and I was near despair. My only relief was to lower my feet and sit up in a chair trying to sleep. That was my situation last year when, for some unknown reason, my neuropathic pain suddenly escalated. Over the years I had been relatively lucky. I had become accustomed to numb and tingly feet but I had rarely experienced such severe discomfort. Only on one other occasion, when I broke a toe, had the nerves in my feet rebelled with excruciating stinging which had lasted for months.
I am still uncertain what caused the severe flare up last year, but at that time I needed pain medication. My physician prescribed it until the pain receded. The medications blunted the discomfort but hardly stopped it, and had the undesirable effect of making me feel muddled and out of sorts. I tried other things as well, such as lidocaine patches, but they proved no match for my raging nerves. Thankfully, after several weeks, the pain faded as quickly as it came. I was relieved yet unnerved by the severity of the discomfort and the mixed blessing of the pain medications.
I share this experience to convey that I understand the disabling effects of severe pain and our complicated relationship with the medications that control it. We may need these drugs at times, but they can quickly and all too easily create other significant problems. There is a constant temptation to use them, as well as recreational drugs, to self-medicate both our physical and emotional discomfort.
While I choose not to use mood altering substances in my own life, I am no hero when there is a medical condition causing disabling pain. I have had patients who were in recovery from substance abuse and who had a particularly difficult time wrestling with the issue of prescribed pain medications. I totally respect the desire to remain clean from mood altering substances, indeed, much of my work is toward that end. But suffering extreme pain is not healthy for our bodies or our emotions; living in pain is not heroic. Anyone in this situation needs to find a manageable balance between controlling their discomfort and avoiding the potential damage that these medications can inflict.
This isn't a decision that should be made in isolation. The experience of pain is subjective and it is extremely easy to drift into self-delusion about the need for these medications. They can quickly become the focus of nearly every waking moment: making sure there is a supply, obsessing about the next dose, and becoming exquisitely sensitive to anticipation anxiety that the pain will worsen or return. Psychology begins to impact our decisions as much as physiological processes themselves.
So what is someone living with HIV and experiencing significant pain supposed to do? My recommendation is to be as informed as possible and work with your physician, and possibly a pain management specialist, to control the pain in the safest possible way.
It has been my experience that some physicians treating HIV dispense potentially problem-causing medications such as opiates (hydrocodone, oxycodone) and benzodiazepines (Valium, Xanax) entirely too freely. I see the results in my office when my patients add addiction to their existing problems. In south Florida many HIV docs are now referring all such cases to pain management specialists. This has mixed results: they often offer a better range of pain control options but the patient has yet another specialist to include in their already crowded calendar of medical appointments.
If one is referred to such a specialist it is extremely important to inquire about their credentials, which should include a board certification. There are many pain clinics that operate simply as pill mills feeding a large supply of opiates that end up in the hands of addicts. The city where I live (Fort Lauderdale) has the sad reputation of being the capital of such pill mills with visitors coming from as far away as Ohio to get pain meds in bulk. Fortunately, recent joint efforts by law enforcement and the medical community have resulted in a great reduction of such clinics.
Besides working closely with their physician (and perhaps a pain specialist) there are some other things people need to know about pain meds and the risks of self-medication. Here are a few:
Potential for Addiction
"A doctor prescribed it!" It is the responsibility of every patient to take an active role in making medical decisions. As I noted above, some docs are all too happy to overprescribe. Others succumb to the pleas (and yes, sometimes manipulation) of their patients demanding pain meds. Whether prescribed or obtained on the street, opiates have a high potential for addiction. For that reason, their merits need to be carefully balanced with their consequences.
Across the country we are seeing a vast increase in the amount of prescribed opiates and a cross-over effect to heroin. Many people who have become physiologically addicted move to heroin when doctors refuse to renew their prescriptions. In other cases, prescription drugs, which are considered "safer" than street drugs, are sometimes illegally obtained for pain relief as well as for recreational use. All of this increased used of opiates has resulted in a dramatic rise in the amount of hospital admissions and in the stunning fact that, in the US, prescription drugs now account for more overdose deaths than street drugs.
Drug Interactions
Some opiates, particularly methadone, interact with HIV medications in powerful ways. Because both are processed by the same metabolic system in the liver (CYP-450), some antiretrovirals can cause a significant reduction in blood levels of drugs such as methadone. This can actually precipitate withdrawal symptoms long before another scheduled dose. In one study Efavirenz (Sustiva) created the need for a 50% increase of methadone to prevent withdrawal. In another, Norvir reduced heroin levels by as much as 50%, increasing the likelihood for overdose. Kaletra can also cause methadone levels to become subtherapeutic. On the other hand, the levels of some HIV drugs, such as didanosine and stavudine, were significantly reduced when used with methadone. Such a reduction can lead to drug resistance. Alternatives to methadone, such as Suboxone, appear to have less interactive potential with HIV medications. Ultimately it is essential to be honest with your physician about all the drugs you are taking - both prescription and recreational - even if they're for purposes of self-medication. It could save your life.
What about marijuana?
The medical use of marijuana is a major topic of discussion in nearly every community in the United States. Research shows that THC compounds do have a therapeutic effect for both pain management and for mitigation of other symptoms and side-effects. The down side is that sustained use of marijuana can create psychological dependence and marijuana smoke contains more toxins than cigarette smoke. Additionally, the dosage of THC ingested by smoking marijuana is inconsistent. Speak with your physician about the possibility of synthetic THC which addresses some of these issues.
What about emotional pain?
Living with HIV is a difficult experience that creates abundant opportunities for anxiety, depression, hopelessness, and numerous other negative emotions. It is tempting to numb these feelings with the use of mood-altering drugs, both prescribed and recreational. Unfortunately this only compounds the problems by driving uncomfortable feelings not to resolution but underground, impacting overall mental and physical health, and often adding addiction to the mix.
I believe that everyone living with AIDS requires not only antiretroviral medications to remain healthy but daily emotional care as well. This can take the form of meditation, relaxation, connecting with others, quiet time to soothe nerves, recreation to shift attention, and an endless list of other activities that restore our balance. When we experience excessive physical pain we should consult with our medical providers to select the best course. At other times, investing in healthy alternatives is the best form of self medication.
April 23, 2012
UNDER THE RADAR: MENTAL HEALTH AND HIV RISK
This article was originally posted on TheBody.com on David's blog "Riding the Tiger: Life Lessons from an HIV-positive Therapist"
Getting the level of new infections down to zero will require breakthroughs not only in medications and improved interventions, but also a broadening of our understanding about the underlying causes of high-risk behaviors which can increase vulnerability for HIV, specifically, mental health concerns.
The emotional impact of diagnosis is clearly understood. After all, who wouldn't be depressed upon hearing they have HIV? Can we be surprised that a positive test result can be traumatic? But what about the impact of depression or trauma on the risk of acquiring HIV? Increasingly, we know that depression not only occurs after diagnosis, but actually significantly increases the risk of becoming infected. It is natural that trauma can result from seroconversion, but we now know it is a major risk factor for HIV long before dangerous behavior takes place. The earlier we identify and intervene on these conditions the better chance we have of reducing the number of new infections.
The following are just a few of the issues I feel should become increasingly integrated into our research and programming.
Depressive Disorders
Numerous studies have documented the impact of depression on high-risk behaviors such as unprotected sexual intercourse, multiple sex partners, trading sex for money or drugs, and contracting sexually transmitted diseases, yet mental health is rarely a component of the design of HIV prevention and intervention programs. Depression can lead to substance abuse, itself a high risk behavior, but even when studies control for substance abuse, depression alone remains a significant factor. It leads to a sense of hopelessness and guilt, and severely impacts one's emotional resilience and self-esteem. Depression leads to high risk behaviors which effectively distract or numb an individual from symptoms, but also greatly increase the risk of acquiring HIV or other sexually transmitted infections.
Sensation Seeking
Defined as the need for thrilling, adventuresome, novel, and often dangerous experiences, sensation seeking is increasingly being identified as a separate phenomenon which can increase HIV-risk. Sensation seeking can, of course, lead to substance abuse, but it can independently impact sexual behaviors (multiple partners, risky sex). Men and women who seek increased stimulation appear to have a low tolerance for boredom, and contrary to common assumption, sexual compulsivity is not impulsive or pleasure-directed, but is associated with lower levels of self-esteem. I have had clients, for example, who "act out" sexually not for pleasure but to manage emotional pain. They seek to numb painful feelings by repeatedly having risky sex, and despite numerous sexual encounters, they end up feeling sad and "empty."
Childhood Sexual Abuse
Such abuse has been in the news recently and the statistics are truly shocking. Prevalence studies of adults estimate that between 6 to 62 percent of women and 3 to 31 percent of men were sexually abused before the age of 18. Many experts believe these numbers may actually be low. Clearly, such a childhood experience is devastating both at that time and in later life. The effects of trauma can lead to increased rates of addiction, sexual dysfunction, depression, post traumatic stress disorder, and other significant concerns. But what about risk for HIV?
Childhood victims have a higher risk of becoming infected because of the long-lasting impact of abuse. Such men and women are significantly more likely to become involved in sex work, to change sexual partners frequently, and to engage in sex with casual acquaintances. They use larger quantities of addictive substances, and use them more frequently, and experience a disruption in the development of appropriate sexual behaviors. Cleary, safer sex messages alone are largely ineffective for individuals whose lives have been disrupted by sexual assault.
Intimate Partner Violence
Research has begun to document a correlation between risk of HIV and intimate partner violence (IPV). Although both sexes can be vulnerable, the majority of persons experiencing IPV are female. Possible mechanisms of increased risk include the consequences of forced sex and injury to the mucous membrane as well as an impeded ability to negotiate safe sex behaviors such as negotiating condom use or refusing sex. IPV can predispose an individual to engage in sexually risky behaviors which in turn increase the risk of HIV infection. A history of IPV can also negatively impact one's willingness to engage in voluntary HIV testing due to shame, stigma, or fear. Once infected, a history of IPV, which is known to have immunosuppressive effects, can lead to a faster progression of the disease. There are very few programs that address HIV and intimate partner violence risk reduction simultaneously, making this an area needing urgent attention.
Redefining the Epidemic
To be truly effective, HIV prevention and intervention programs must broaden their scope to include a variety of other issues that directly impact the risk of acquiring HIV. "Syndemics," or simultaneous epidemics, is a useful approach that more realistically reflects what I see in my office and in the community. There are issues of HIV, other sexually transmitted infections, mental health disorders, addictions, trauma, and maladaptive behaviors such as sensation seeking that increase an individual's risk. The HIV community, largely due to accidents of history, is divided by funding streams and professional training into separate silos that too often lack an integrated understanding of what any one individual is or has experienced that could put him/her at increased risk.
We need to be certain our outreach and prevention efforts incorporate the effects of mood disorders and behavioral concerns on sexual behaviors. We need to understand that all sexual behavior is not the result of free will but may, in fact, be driven by coercion or survival. We need to understand that high risk sexual behavior or addictions may result from a history of childhood sexual abuse and integrate this information into our interventions. To truly get to zero, we need to broaden our reach to all of the varied settings where vulnerability for HIV is born.
April 18, 2012
“Let Them Die“? - The Dangers of Losing Compassion
This article was originally posted on TheBody.com on David's blog "Riding the Tiger: Life Lessons from an HIV-positive Therapist"
O for God's sake
they are connected
-Muriel Rukeyser “Islands”
Several widely-televised incidents recently exemplified the harsh and frightening polarization we are experiencing in our society. The first was at the Republican debate at the Reagan Presidential Library where the audience spontaneously clapped and cheered when Governor Rick Perry's record of 234 executions was discussed. The second was a clear shout from the audience of "let them die" when Representative Ron Paul was asked hypothetically if he would treat an uninsured individual who required medical attention. For me, these were stunning moments of disbelief.
Themes of independence, personal responsibility, and self-sufficiency have long been at the core of American culture and, overall, I believe they have served us well. But they have been balanced and tempered by a belief in a role for government that provides services and infrastructure beyond the capabilities of any single individual. Indeed, a functioning democracy surely relies upon a degree of empathic feeling among its citizens. From a medical point of view, anyone who states they can take care of themselves (and that they will have nothing to do with the needs of others) has either had astoundingly good luck in terms of health or is so blinded by ideology that they have become delusional.
What does this mean for HIV? Is it realistic for anyone to be able to pay for their own medications? Most persons with HIV have experienced periods when they were too weak to care for themselves. Should they be abandoned? Earlier this year, I heard a nationally- prominent HIV/AIDS advocate state that every year in Washington, for 25 years, he has believed that politicians would ultimately do the right thing in terms of AIDS funding. He stated that this year, for the first time, this might not be the case, and that indeed essential funding and the lives are in jeopardy.
Ironically, self-sufficiency has been central to the AIDS epidemic. In the 1980s and 1990s, when government was not responding, we at the grassroots level took matters into our own hands. We were the ones who cared for the sick, who sat with them when their families turned their backs, and who did not let them die alone. It was demand from the bottom up that fueled services and drug research, and it was persons living with the virus who gave our own bodies for drug trials.
It seems now that large (and growing) segments of our society have come to view basic compassion, the emotional capacity to experience another’s pain, as a character defect, yet it is an essential element of what makes us human. Neuroscience is beginning to provide some intriguing clues about compassion. Each of us has "mirror neurons" in our brain that allow us to emotionally simulate and actually experience the pain of others, which causes us to feel empathic distress. That is, at some level we experience the emotions of others as if they were happening to us. Such feelings are thought to motivate pro-social behavior. These mirror neurons have been observed in both primates and other species, including birds. And while they certainly play a role in imitation and learning, they appear to have an emotional component as well.
This begs the question: how can there be applause about executions and shouts of "let them die" if we have these mirror neurons that promote compassion? Buddhists might say it concerns the self-centered focus that flows from the fundamental delusion of believing one is a "separate self," essentially disconnected from others. This doesn’t have to be the case. Intriguing scientific research utilizing fMRI studies is beginning to map out areas of the brain that are activated by compassion. This research is documenting the increased capacity of experienced meditators (>10,000 hours) to rid themselves of a “self-focused delusion” and thereby understand their integral connection with others and experience more intense compassion for other persons.
When individuals see themselves as essentially separate from others, normal "empathic distress" can actually trigger memories of emotionally painful or upsetting events from their own past. This can, in turn, motivate them not to experience painful compassion for someone else but actually throw up a defensive posture that reinforces separateness and disconnection from others.
When empathic distress is very intense, it can move someone entirely out of a compassionate mode, according to Martin Hoffman (a theorist in this area). Other factors that negatively impact the ability of empathic distress to translate into compassion include familiarity bias (identifying strongly only with an “in-group”) which inhibits identifying with the experiences of someone who is “different,” and habituation (repeated exposure to distress over time).
What does all this mean for the HIV/AIDS community? I believe we have to continue our grassroots tradition of activism. Stigma blossoms where there is invisibility and silence. Such callous and immoral shouts as "let them die" need to be challenged. The destructive myth that we are all separate from one another, and that anyone experiencing HIV (or any illness, for that matter) is on their own, will lead to further stigma, cuts in essential funding, and deaths. It also contributes to the fallacy that our destinies, as individuals and as a society, are not inextricably bound together.
Ironically, despite my anger, I have some level of compassion for these rigidly self-focused, "self-reliant" people. While this certainly doesn't mitigate their destructive potential, I believe that anyone who applauds executions or shouts "let them die" is, at some emotional level, in pain. They might benefit from the words of the Dalai Lama: "if you want others to be happy, practice compassion...if you want to be happy, practice compassion."
March 31, 2012
POSITIVE LIVING 15: CONNECTING HEARTS AND MINDS
Gulf of Mexico at Fort Walton Beach, Florida, site of the Positive Living Conference
This article was originally posted on TheBody.com on David's blog "Riding the Tiger: Life Lessons from an HIV-positive Therapist"
Several attendees drove fifteen hours from St. Louis. Others came by caravan from Atlanta. In the hotel lobby there were happy reunions of friends who hadn't seen each other since last year. Overall nearly four hundred and fifty people made their way from 22 states to the white sandy beaches of the Florida panhandle in early March. It was spring break, but their purpose was much more a matter of life and death. They were gathering for Positive Living 15, the largest conference in the nation specifically for people living with HIV.
For fifteen years Butch McKay and his small staff at OASIS, the Okaloosa AIDS Support and Information Services, have somehow patched together a variety of funding to create a world-class conference where nationally-known figures share information and support with hundreds of persons living with the virus. A generous scholarship program underwrites the hotels and meals for most who otherwise would be unable to attend. Many have no other access to workshops where state of the art information as well as life-saving skills are shared in an atmosphere saturated with both laughter and heart.
The information provided is first rate. Martin Delaney, a prominent activist and founder of Project Inform, attended every Positive Living conference until his death. Other well-known figures continue to lead workshops and deliver keynote addresses. NMAC, the National Minority AIDS Council, provided support for an update on the 19th CROI (Conference on Retroviruses and Opportunistic Infections) which occurred just days before in Seattle. Additionally, the North Florida SHARP (State Healthcare Access Research Project) report was unveiled. This document, a project of the Harvard Law School and the Treatment Access Expansion Project, was one of several that have assembled critical data concerning states' capacities to meet the healthcare needs of people living with HIV. An annual Activate U Advocacy Academy provided invaluable training on basic advocacy skills and encouraged attendees to make their voice heard.
The workshops were informative, interactive and fun. Topics ranged from housing to ADAP, intimacy to trauma, and faith-based prevention to laughter therapy. There were groups for woman, transgendered, and men who have sex with men. In my own workshop about managing the effects of living with the virus year after year ("When the Crisis Lasts a Lifetime: HIV, Burnout, and Emotional Survival"), the attendees were hungry for information about both the physiological and emotional effects of stress and trauma as well as for solutions and skills to manage that stress.
The real magic of Positive Living doesn't happen in the breakout rooms, however, it takes place in the person-to-person connections made throughout the weekend. It could be felt in the moving heart-circle on the beach in memory of those who are no longer here, or at the dance where everyone loosened up to rhythms and moved their bodies among somewhat surreal remote-controlled, large-scale inflatable fish. Most of all, it was evident in the casual socializing where, perhaps for the first time, attendees could relax in a space where everyone they encountered was either living with HIV/AIDS or was an advocate and understood how it feels to survive and thrive with the virus.
It is this universal acceptance that was truly profound. Even after thirty years, HIV carries enormous stigma. The majority of people attending this conference come from the south, many from rural areas where they survive in relative isolation. Some typically drive one hundred miles to access care, many have been irreparably separated from their families, and each one lives with the burden of social stigma and isolation. It was a gift to witness the magic of people moving from isolation to connection with others living with HIV. It was a respite, at least temporarily, to the isolation imposed by AIDS. When stigma and barriers of serostatus are neutralized, a playfulness emerges. Strangers feel, and indeed are, connected in profound ways. People make eye contact, say hello, and smile spontaneously. There is a conscious acceptance that we are all on this journey together.
The Positive Living conference is a powerful reminder that living with the HIV virus requires much more than medication access, adherence or good medical management. People living with the virus need information, skills, and social support. As professionals, we must recognize that the spirit of our patients also needs to be nurtured, because it retains the hurt and shame and fear that accompanies HIV.
This conference is one of the few places where a large group of individuals can get together and connect at the level of the heart. It is every bit as essential as daily medications.
It is troubling that every year this conference becomes more difficult to organize. Dollars are increasingly scarce and the constituents of Positive Living, diverse both in terms of race and sexual orientation, have traditionally been marginalized. We need to protect this conference and any others that directly serve people living with the virus. They are unique events that provide skills as well as emotional and spiritual nourishment to a starving population. It is, or course, necessary to quickly disseminate scientific knowledge but let's not forget the most important constituency in this fight - people living with HIV/AIDS.
June 23, 2011
The Endangered Wonder of the Positive Living Conference, and Why It Matters for Our Patients
Every spring, on the white, sandy beaches of the Florida Panhandle, an unlikely gathering takes place. On that narrow strip of land, between the Gulf of Mexico and Choctawhatchee Bay, 450 HIV-positive men and women from around the country, but mostly from the Southeast, come together amidst occasional spring breakers for a weekend of socializing, education, some silliness, a few tears, and just plain fun.
This year, the Positive Living conference turned 14, an extraordinary success by any measure, but even more poignant because it is the only remaining large-scale conference for persons living with HIV. It is a remarkable blend of individuals: Those who are well-known for their work in the field mix easily with positive men and women who may never have seen the ocean, or been able to spend a weekend by themselves at a hotel, or (most certainly) been around so many other positive individuals in one place.
I am always struck by the rich amount of valuable information available for both attendees and presenters. Tom Liberti, Florida's HIV/AIDS Bureau Chief, gives an annual review on the state of affairs, especially poignant this year because of the AIDS Drug Assistance Program crisis. There are medication updates and workshops on mental, physical and spiritual health. There is a daylong AdvocacyU workshop, where attendees learn how to use their voices to advocate on their own behalf.
And there is history. Until his death, Martin Delaney never missed Positive Living. And this year, as Martin Delaney did in years past, Paul Kawata, the executive director of National Minority AIDS Council, gave a keynote that captured a long-term view of HIV -- where we have been, our successes, our setbacks, our power, and the many struggles to come.
The heart of the conference lies with the participants, and it is here that the immense benefit for one's clients living with HIV can be clearly seen. Most receive scholarships, which pay for the beachfront hotel rooms and meals. Many are from the rural South and simply don't have adequate access to medical resources -- or, for that matter, each other. Positive Living fosters the formation of networks for both medical and social support; but mostly, at least for a few days, it normalizes the stigma of living with HIV. For one brief weekend, everyone is HIV positive (or a very close ally). One can feel a sense of joy and freedom in sharing this physical and emotional space.
The very existence of this conference is a tribute to the vision and hard work of Butch McKay, the executive director of a relatively tiny agency, Okaloosa AIDS Support and Informational Services, Inc. McKay and a handful of staff raise the necessary funds and organize this event with a mastery and focus that have a sense of life or death. And there is no doubt that Positive Living enhances, and even saves, the lives of persons living with HIV.
But the conference itself, like others before it, is at risk. Every year, fundraising is more difficult even as the need grows. Across many states vital programs are being cut, individuals are struggling with fewer resources, and bureaucratic shifts resulting from budget cuts make maneuvering the system, and surviving, that much harder. We witness our clients struggling with these issues every day.
It's easy to see why such events have disappeared. They require extraordinary determination to bring them to life, and the costs are daunting. But their demise represents one more great loss attributable to this virus. Without such gatherings, persons living with HIV have one less resource by which they can remain educated, connected, empowered and even sustained.
Too often we allow ourselves to focus on the objective data of HIV: CD4 counts, viral loads and years since diagnosis. Events such as Positive Living heal at a deeper, more subjective level: the spirit. They renew our determination as providers and they reenergize our clients' ability to integrate healing at multiple levels. For all this and more, they are well worth fighting for.
August 14, 2010
NATIONAL GAY MEN'S HEALTH SUMMIT TO BE HELD IN FORT LAUDERDALE AUGUST 25 - 29
Hundreds of gay men and their allies from throughout the country and beyond will gather on August 25 – 29, 2010, at the Sheraton Fort Lauderdale Airport and Cruise Port Hotel to participate in the 2010 National Gay Men’s Health Summit. The theme of the event is "Creating a Brighter Future: The Next Decade of Gay Men’s Health" and will be held jointly with the 9th annual Southeast Regional Gay Men’s Health Summit. Over 250 gay men (as well as, bi, trans men, other men who have sex with men and their allies) will gather to reflect on and celebrate gay men’s lives while working on a brighter future for gay men’s health and wellness.
The summit is open to all and registration has been underwritten for residents of Dade, Broward, and Palm Beach Counties by the Broward County Health Department and the Florida Department of Health. Pre-summit workshops begin on Wednesday, August 25, and include a panel featuring an intergenerational dialog around gay youth, adults, elders and ancestors; another focusing on body image and weight issues; and a gay men's leadership institute.
The formal summit begins on Thursday, August 26, and concludes on Sunday, August 29, and features a number of plenary speakers and nearly 70 workshops on topics as diverse as addictions, mental health, HIV, wellness, dating and relationships, and spirituality. Many of the workshops will address special topics and populations, such as HIV negative youth of color, building community among Hispanic gay men, return to work issues for those on disability, and addictions recovery. The summit is designed to promote social interaction and fun. A significant number of the workshops are experiential, such as laughter yoga or meditation, and are intended to be edgy, such as the impact of GRINDR on our community and the use of social media to improve gay health and wellness. Besides casual interaction with gay men from around the country (and beyond), there will organized social events such as a show and a pool party.
The gay men's health movement grew from an interest in expanding the scope of gay men's health beyond (but certainly including) HIV to a full range of other issues that impact our health and wellness. At the Summit, gay men and their allies will have frank and open dialogue about race, racism, identity and gender politics, aging and class. We will discuss these and other domains and paradigms for thinking about gay men's health. Our conversations will cover the broad spectrum of interests for gay men with key focus on strengths-based organizing, emerging issues, and other hot topics.
One of the key challenges facing gay men is to ensure that we continue to be involved in the strategizing and implementation phases of Health Care Reform. Another key challenge is to develop creative funding strategies and work alongside key policy makers while we simultaneously work with fellow advocates to shape policy such as ADAP and the National HIV/AIDS Strategy.
Walk-up registration is available beginning at 10:00am on Wednesday, August 25. For more information visit the 2010 National Gay Men’s Health Summit website at: www.gmhs2010.com.
December 01, 2009
A Different Longtime Companion: Reflections on World AIDS Day 2009
It was 1982 when my friend Andrew developed an odd pneumonia that put him in the hospital and ran through his body with such ferocity that he was dead in three days. My friends and I were stunned, until it soon happened again – this time with another acquaintance who survived longer, but ultimately succumbed to an illness the New York Times called “GRID,” gay-related immune deficiency. GRID soon became AIDS, and one by one almost all of my friends became sick.
Thus began a journey that continues to this day, first marked by terror, then sadness, then overwhelming grief, and then by sheer determination as we stepped up to care for each other. My life as a thirty-something gay men in New York was quickly transformed from exuberance in the aftermath of Stonewall to determination marked by caretaking and political advocacy.
The energy on streets in the Village and the Upper West Side, once both high-spirited and sexually charged, became heavy with sadness. Many men simply disappeared as the disease confined them to their homes, or their friend’s homes, or hospital wards. Many died. Others were out using the patchwork of services that began to develop in response to the crisis. The streets were filled with the odd sight of thin men with wide terrified eyes walking awkwardly with canes. I vividly recall one very cold winter day when I helped one frail young man struggle across Seventh Avenue through slippery frozen slush on his way to St. Vincent’s.
Despite persistent optimism and a strong sense of spirituality, for me the eighties became a human tragedy. My life was entwined with AIDS at every level: intimate, social, and community. As we lost one friend after another there was nothing to do but go forward, caring for those who were dealing not only with physical illness but also struggling with the emotional pain of rejection and stigma. And AIDS kept coming.
One price we paid, among many, was never really stopping to grieve because so much needed to be done. We hardened our emotions and our resolve – there was simply too much to do. Men of my generation live with a great wound that, for many, remains unacknowledged and unexpressed. We need to heal, even in the face of the ongoing epidemic.
Now, nearly thirty years later, AIDS continues to create suffering. For many, it has lost its urgency. A new generation has grown up with the disease and new medications, and view it as a manageable illness, but it is relentless and continues to demolish lives. Long term survivors have developed an acceptance of the unknown. They have given their bodies to drug trials and dealt with multiple losses, either through the death of partners and friends, or alienation from family. Ironically, they now face a new wave of heart, liver and kidney disease as a result of the medications that have kept them alive.
We need to remain vigilant about AIDS. We need to advocate for new treatment alternatives like rectal microbicides and redesigned prevention efforts. We need to remain informed and fight complacency. We need to end the stigma that surrounds AIDS to this day, undermining both prevention and treatment. Mostly, on this World AIDS Day, we need to remember the pain, the lessons, the courage, and the successes of the past and use them to renew and reenergize our continued work to end AIDS once and for all.
David Fawcett
David Fawcett, PhD, LCSW, is a psychotherapist, sex therapist, and gay men’s health advocate in Ft. Lauderdale.
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