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.

POSITIVE LIVING 15: CONNECTING HEARTS AND MINDS

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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.