Presentation on HIV and stigma at Boston College’s Social Work and HIV Conference – Chicago, May,2013

You can download the presentation here:

Fawcett SW and HIV Stigma 2013

SUPERSIZED ALCOPOPS: FLAVORED ALCOHOLIC BEVERAGES RETURN IN A BIG WAY

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This article was originally posted on TheBody.com on David's blog "Riding the Tiger: Life Lessons from an HIV-positive Therapist"

    Public apprehension about recreational drugs, especially those that impact HIV, seems to come in waves that swell with increasing alarm and then peak and fade away, always to be replaced by the next "drug du jour."  Heroin, cocaine, and methamphetamine, each with a well-deserved reputation for putting people at risk for HIV or, if HIV positive, for interfering with their ability to properly manage their health, have all gained notoriety in recent years.   

    While the popularity of various illegal substances rises and falls, alcohol consistently remains the granddaddy of recreational drugs.  New forms of alcoholic drinks began appearing in the 1980s, first with wine coolers and then flavored alcoholic beverages (that's FAB, for short) and energy drinks.  They have gained popularity, especially among youth.    Now, just months after the FDA urged the removal of caffeine from alcoholic drinks such as 4Loko, beverage companies are once again shape-shifting their fruity-tasting concoctions and they're literally bigger than ever: they've been supersized.  The new packaging, still largely targeting young (and often underage) drinkers, features a 23.5 ounce can with a 12% alcohol content.  That's equivalent to four or five beers.   They're cheap, accessible, and highly potent.

    Why is this a concern?  The numbers tell the story.  10.7 million underage youth drink alcohol, and about 70% of those youth binge drink, resulting in harmful physical consequences, poor judgment, lower inhibitions, and an abundance of high risk sexual behaviors.  And the concerns extend beyond youth.  Excessive consumption of alcohol is a significant health concern for everyone, but especially for those at higher risk for, or living with HIV.

    Some speculate that if alcohol were introduced today it would never be legalized.  It is, of course, here to stay.  Because it is so easily available, socially acceptable, relatively cheap, and widespread, it's easy to forget  its risks, which are really worth a second look.   It's not fair, however, to demonize alcohol.  There is little evidence that moderate drinking (described in most literature as one drink per day) impacts persons living with HIV.   Excessive drinking, however, can be destructive for persons living with HIV for a number of reasons.  Here are a few:

Excessive Alcohol Weakens the Immune System

    The physical toll of too much alcohol is expressed in a number of ways.   It taxes the liver, which is already working overtime metabolizing medications.  This situation is made even worse, of course, when someone is also dealing with Hepatitis.  Alcohol also interferes with the body's ability to create white blood cells and is disruptive to other factors necessary for health such as hydration, nutrition, motivation for exercise, and sleep. 

Interactions with medications

    As noted above, alcohol can affect the absorption of medications necessary to fight the virus.  This can result in reduced efficacy, more unanticipated reactions, and alteration of the effects of some drugs.  Alcohol  also results in medication adherence problems due to altered states and inconsistent behavior.

Risky activities

    Speaking of inconsistent behavior, alcohol impacts  reflexes, inhibition, and judgment, which can clearly compromise the health and wellness of the drinker.  This can lead to poor sexual choices and a loss of motivation for safer sex.  Despite that fact that alcohol impairs physiological sexually functioning, people under the influence can still engage in enough risky sex to get them in trouble!

Mood

    Alcohol is a central nervous system depressant which directly affects mood.  It can be misused to numb feelings of sadness, anger, and fear, and can quickly become a crutch on which people depend to avoid uncomfortable emotions.  Persons living with HIV are at greater risk for addictions of all kinds, and it is incumbent on anyone who is HIV positive to be vigilant about their alcohol consumption. 

"I'm recovering from drugs and alcohol isn't my problem!"

    I have patients in recovery from amphetamines who question why they need to abstain from alcohol.  Many proclaim their dislike of an alcohol high: slow and sluggish. They prefer the perceived clarity of amphetamines and see no reason why they can't indulge in a beer or glass of wine with their friends.  After all, they say, alcohol isn't the problem, it's meth (or cocaine).  Unfortunately many discover that a few beers in the bar with friends reduces their ability to resist the impulse to use their drug of choice (such as cocaine and meth) and their resilience and sometimes their recovery crumbles after a few drinks.

    Despite the numerous risks, excessive alcohol consumption remains a common problem that requires routine monitoring.  Most people won't volunteer this information unless specifically asked, and even then their responses may be less reliable until a level of trust is established.  There are quick screening tools for alcohol such as the MAST (Michigan Alcohol Screening Test) that are effective and easy to administer.  Of course it is dangerous for a heavy drinker to just stop using alcohol, but with proper medical supervision there is no reason for excessive drinking to jeopardize anyone's health.

STARTING HIV MEDICATIONS: A LIFE-SAVING CHALLENGE

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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.

PAIN, DRUGS AND THE RISKS OF SELF-MEDICATION

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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.

UNDER THE RADAR: MENTAL HEALTH AND HIV RISK

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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.   

“Let Them Die“? – The Dangers of Losing Compassion

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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."     
   

AVOIDING THE SLIPPERY SLOPE TO BURNOUT

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This article was originally posted on TheBody.com on David's blog "Riding the Tiger: Life Lessons from an HIV-positive Therapist"

The text alert came in the middle of a session.  It was from a colleague and read simply "call asap."  I dialed his number between patients and when he answered I was surprised at his quiet tone and his admission that he was really shaken.  We often utilized each other for consultation and support, but on this day he sounded defeated.  He told me that a patient had just died.  

This had, of course, happened before.  We both had spent the better part of our professional lives working with AIDS patients and their mental health concerns.  Simply due to the nature of the work, we had seen plenty of pain, both emotional and physical, and had experienced significant loss.  This patient had been a middle-aged man co-infected with HIV and hepatitis who succumbed to liver failure.  In the absence of any family, my colleague had invested extra effort fighting a disorganized health care system in an attempt to address his needs.  That frustration, combined with growing emotional exhaustion and ultimately his sense of failure that the patient died, made obvious to both of us that he was experiencing burnout.

Burnout Syndrome (BOS) was identified in the 1970s and  results from prolonged exposure to a variety of job stressors, ranging from long work hours (number of night shifts, time since last vacation, workplace organization or conflicts)  to emotional upheavals.  BOS is characterized by diminished emotional coping abilities, increased depersonalization (detachment and cynicism), and a low sense of personal accomplishment. It can be indicated in a variety of ways: long term exhaustion, feelings of failure, irritability and physiological symptoms such as headache and insomnia.

Healthcare professionals working with HIV/AIDS patients — physicians, nurses, social workers, and other personnel — are at a very high risk for Burnout Syndrome.  Some studies estimate that as many as 50% of workers in this field either currently or previously have experienced burnout.   There are even more specific risk factors within our ranks.    For example, younger workers experience more burnout than older ones.  Perhaps those that endure in this field develop coping mechanisms or have more control over their work environments.  Individuals with unresolved prejudice about sexuality or concerns about death may also be at risk.  Conversely, internally-based coping strategies, such as expression of feelings, patience, persistence, and a sense of optimism, appear to be protective factors.

What can be done about burnout?  Organizations can have a significant impact by carefully managing how staff and procedures are structured, as well as by focusing on communication and team building.  Individuals, as well, can employ a number of strategies to keep themselves emotionally fit and resilient.  Here are a few that will strengthen one's ability to keep burnout at bay. 

· Self care 

I frequently hear myself telling patients about the importance of self care: rituals of renewal that provide grounding for the turmoil we inevitably face on a daily basis.  These can take many forms: meditation, relaxation, physical exercise, healthy eating.  In my own life,  I know that these essential activities can often be deferred while other priorities vie for my attention.   It never fails, however, that if I invest time and effort in myself,  I am much more present and effective in my professional life.

· Interpersonal skills

There are common self-defeating patterns that contribute to work-related frustration and burnout which, once identified, can be easily corrected.  Among these are:

  • Overreacting, that is, trying to find an immediate solution to every problem.  Answers may not always be immediately clear, or they may require some thought in order to reach a good decision.  
  • Taking ownership of problems that are not our own.  Individuals in the helping professions frequently have co-dependency issues that contribute to the false belief that everything is our problem to solve.  Clear boundaries are essential to survive in this field.  
  • Remembering to act on facts, not feelings.    If we are tired or worn down, it's easy to react on the basis of emotions (anger, hurt, fear) rather than facts.  It's important to take a step back, breathe, and get a sense of what is really going on inside.   Old feelings can often be triggered by present circumstances and sometimes seriously distract our focus.  

· Balanced Living

At a recent a workshop of healthcare workers in HIV/AIDS, I asked people to share how they employ recreation in their lives.   Surprisingly few hands were raised.  Many of the participants admitted they lacked a hobby, a passion, or any other recreational activity that got them physically and emotionally out of their workspace.  Our brains and bodies need balance in order to function well.  Remember that having fun is essential to one's health.   

· Connection

Whether through friends, family, partners, or spirituality, each of us needs a strong sense of connection to the world around us.   It is easy to get caught up in the drama of our professional lives and forget to nurture the other relationships that are essential for our wellbeing.   It is through these that we practice receiving love and support.  Many healthcare workers find it much easier to give rather than receive in their relationships and they often give until they are depleted.  In the end, giving and receiving must be in balance. 

The work we do is vital.  It can be emotionally and physically taxing, but it doesn't have to be personally harmful.  It we pay attention to our needs, acknowledge the other people in our lives, and monitor how smoothly we move through our day, we can create a professional life that is not only rewarding but sustainable as well.   

  

POSITIVE LIVING 15: CONNECTING HEARTS AND MINDS

PL 3
Gulf of Mexico at Fort Walton Beach, Florida, site of the Positive Living Conference

Thebody reduced   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.