Monday, October 1, 2012

Burden

“She had not known the weight until she felt the freedom.” (The Scarlet Letter)

There is a Buddhist parable that tells the story of two monks who come across a wealthy woman standing at the edge of muddy stream with no way across that would not result in getting her dirty. She is selfish and rude and is abusing her servants whose hands are full of her packages and therefore cannot offer her the assistance she feels is her due. The young monk views the scene and decides to do nothing. The older monk, however, heads toward the wealthy woman, picks her up, carries her across the stream and sets her down, her robes still pristine. The woman walks away without thanking the monk, her shrill orders to her servants ringing through the air. Hours pass, and the monks continue their journey, when the young monk speaks. He can no longer keep silent. “She didn’t even thank you!” he intones, obviously very upset. The older monk looks at him calmly and says, “Friend, I put her down hours ago. Why are you still carrying her?”

Ah, to be so wise as to put down our burdens. Think of the energy we all expend carrying around regrets, old fears, judgments, anger, anxieties that weigh us down, cloud our vision, keep us from actualizing ourselves in the moment, from realizing deep connections and forging true relationships today. We didn’t realize a parent’s dream; our waistline is thicker than desired; the playground bully’s old taunts still cling to us; past rejection keeps us from taking new risks. HIV by itself is one helluva burden, often coming gift-wrapped in layers of additionally weighty cargo – stigma, fear, regret, resentment, anger, shame, bitterness, more anger. I have been the observer of too many backs bowed by this weight. What would it feel like to put it down? Imagine how much easier the breathing would be, the movement from here to there, the increased comfort within our own skins. And the health benefits. Like quitting tobacco, reducing our carbs and training for a 10K all rolled into one! Letting go of those burdens by forgiving ourselves and others, by accepting where we are as where we are meant to be in this moment, by opening our minds to her truth and his truth without passing judgment, by preparing ourselves each morning for the possibility of joy and meeting it when it arrives in small ways or big with open arms, by passing on kindness to our neighbors and accepting kindness in return, by loving, by being loved, by working on correcting faults without resorting to blame… what wise and weight-less people would be.

I am reminded of another story; one containing a similar lesson, but taught not by an old monk but by a little boy. I remember when my oldest was no more than three. We were having quite the day. Not too far off from normal as he always was creative in his ability to challenge. He seemed to imagine infinite new ways to push the limits and he once again was on the receiving end of an exasperated parental lecture, complete with head shaking and finger wagging and a voice that rose to the rafters. A short time after he hopped back to me from his bedroom suggesting we head to the park, all smiles and anticipation. I was still reeling from the last escalated interaction and stared at him a bit dumbfounded. “You were just in trouble!” I stated with great emphasis. “Big trouble!" “What?” he asked with some confusion. “That was five minutes ago! And you don’t even like being upset at me. Why don’t you just decide it’s time to be okay?”

Yes, to be so wise as to put down these unnecessary burdens. To just decide, as my three year old suggested, that it’s time to be okay. I like the way that sounds. I suggest we all give it a go and grant ourselves permission to be okay.

Monday, August 27, 2012

Death with Dignity

At the risk of sounding dramatic, the world as we know it may very well be coming to an end - at least as far as that world involves specific HIV/AIDS-funded programs and benefits. The full enactment of the Affordable Care Act will result in serious shifts in funding as the majority of Ryan White eligible recipients will come to fall squarely within the realm of new Medicaid beneficiaries. And the ACA sets up provisions for care management of chronic illnesses in a way that currently is not seen much outside the world of HIV/AIDS and perhaps more limitedly in cancer care. Such emphasis of care management suggests a shift not only in funding but in institutional purview that could threaten the current dominance of AIDS Service Organizations (ASO) for offering medical case management to those with HIV/AIDS. ASOs nationwide are aware of this and are/have been trying to figure out what their next steps into this new world should be.

Evergreen AIDS Foundation (EAF) is in the same boat. Searching for toe-holds, trying to predict the perfect niche where the experience and expertise of a small non-profit could successfully compete with the more-than-likely corporate run behemoths that will soon take over care management of chronic illnesses, EAF is trying to predict its place in this new future. And all the while it is struggling with these "coulds", it wrestles with the no less powerful or difficult "shoulds". What should we become? What is our responsibility to our clients? To our communities? To our employees? It is enough, I promise, to give one a profound headache - with a bit of heartache thrown in for good measure.

For no matter what occurs - determined by plan or providence - change is inevitable. The kind of change that suggests a death of sorts, and possibly a true end to the agency overall. I would caution that that truth not be left out of this equation. As the tidal wave of possibility comes crashing over us, it is paramount to keep in mind that this agency of more than a quarter century could go out of existence. We must know that, own that, or we risk being swept away, no longer the captains of our own fate.

In thinking of the importance of remaining fully engaged in our destiny, I am reminded of the death of a lovely young woman who, because of the refusal of those around her to allow the fact of her dying to be named, to come into being, they perhaps prevented her from owning and directing this most important leg of her thirty-some year journey.

I knew she was dying. I went to visit her in the nursing home that served as step one down the too short ladder from her independent, relatively youthful, still rebellious thirty-something self to final hours in a benignly decorated hospice house. The steps in between being frantic midnight romps in speeding emergency vehicles that she would not remember and torturous days in yellow smelling hospital rooms covered in tubes and sweat, seesawing painfully between hope and reality.

That nursing home had long corridors of rose-covered carpets that muffled the slap of walkers and canes and spoke distinctly of the average age of the residents. I remember she wore her hair choppy, edgy, with deep ribbons of rock star purple, punk pink. I clung to those colors - lifelines to possibility. But the face beneath the edgy cut spoke the truth. She was hugely swollen, her body filling repeatedly with the fluids her organs could no longer contend with. She was drowning from the inside out; the slow constant rise washing most cruelly through her mind, creating confusion and important gaps in her memory.

We talked about the county fair that was coming. There were advertisements on the walls of the visiting room where we were sitting. Would she attend?, I'd asked, like a fool. "Perhaps," she answered; she was considering it.

I didn't want to be the first one who said the words. You are dying. You are going to die. The end is coming near. Like the game, Taboo, we walked around it. In circles, in curves, in curlicues.

I assumed the doctor would have the conversation. Should have the conversation. I believe the doctor assumed the hospitalists would. But they were barely invested and too focused on the stopwatch care of their Nascar-like rounds. Ninety seconds to greet, read the notes, check the most recent vitals, nod in sympathy, state their plans for tomorrow's collaboration and bow out. And doctors are trained to heal, to fix. Their goal is to extend life and to avoid death.

So we stayed focused on the moment we were in and we rode the ride.

A ride that she no longer had control of. Three decades of rebellious independence terminating in blind corners, fun-house mirrors distorting the reality of even the simplest of images.

Fortunately, it’s been a while since death was a regular part of this business. The agency's beginnings however - so often written - were of friends helping friends die with dignity. This is the ground on which the agency was built and although I was not around then, I must believe that those lessons remain learned and those skills remain reliable. Perhaps it is time to tap back into those skills, circle round a table as friends and seriously consider every possibility, including that of a self-directed exit.

I entered this picture fairly long after the miracles of medications were already being realized and the transition from inevitable departure to long term chronic condition had been made. The event I described above had roots in a different illness, as we see sometimes, of course, across the hundreds of people we serve. But I've heard the stories of our beginnings. Of those friends helping friends. I've met many of the people who were there from day one, or day thirty or six hundred ninety seven. The loved ones, friends, neighbors who held hands and wiped brows, cleaned messes, made meals, and offered that range of actions and emotions that are the hallmark of basic human decency. They created this agency and its mission of fostering a healthy hopeful community response to HIV and AIDS.

And now we're here. 2012. Facing unknown but inevitable and very likely big and important changes in the next few years. The Affordable Care Act jumped another hurdle with the Supreme Court ruling in June. Millions of Americans will (hopefully) be newly insured through Medicaid - the majority of our clients among them. The Ryan White Care Act sunsets next year with unknown consequences. Professional helpers, such as us, are scrambling nation-wide to figure out who they are, who they can be, who they wish to become. We're no different. We are doing just as much scrambling.

The way I see it, we can transition to an afterlife, continuing as an HIV agency in this new heavenly realm of the federally insured. We'll leave our substantive selves behind, streamlining into something less practical, more idealistic.

Or we can opt for reincarnation. Find a new niche. Build on our years of experience and our knowledge to grow into something similar but different. Probably bigger in the sense of both numbers served and illness experted.

Perhaps we can even do some kind of combo, casting our net as wide as possible; standing in front of every door that might possibly lead to the promised land of continued purpose and ongoing income.

Or we can let the end come. We can celebrate the many victories of twenty-seven plus years, remember fondly the many many people who've been part of this agency, throw ourselves a damned fine party and embrace our death with dignity.

But whatever we - the Board of Directors, the staff, our communities - decide, it will include a death of some sort. Whether that death leads to something new or simply to an end, we must acknowledge the dying in order to truly own the process and the outcome. We cannot sit back and expect others to name it for us. I am not calling today for one plan over another. I am asking that we walk into our future knowingly, with nothing left unsaid - no regrets. And I acknowledge that all are viable options, even that of a graceful end, eulogy self written.

Tuesday, July 17, 2012

The FDA, OraQuick and an Inveterate Scandal

scan-dal [skan-dl]
noun
     1. An offense caused by a fault or misdeed
       2. A 24-year ministerial act of governmental paternalism

In the midst of our country’s 236th celebration, it seemed as if independence was on everyone’s mind, including (and most especially) from those within the Food and Drug Administration (FDA). Independence, in this case, was from paternalistic policies.

The approval of the 20-minute, OraQuick Rapid HIV test—the over-the-counter home-use kit—doesn’t seem too terribly scandalous at first glance. In fact, if anything, it sounds like an unmitigated achievement, a holy grail for reducing HIV transmission. That is until you dig further into the initial FDA ruling, when that occurred and the cost of that decision.

According to statistics from an FDA Advisory Committee that presented its findings in May, the OraQuick technology holds the key to preventing more than 4,000 new HIV transmissions in its first year of use alone. Roughly translated, that’s about 8 percent of the 50,000 new U.S. infections that occur yearly.  In all, about 1.2 million people are now living with HIV, according to the Centers for Disease Control and Prevention (CDC); about 20 percent of those infected don't even realize they have it. Those 20% go on to the vast majority of all new infections.

And while July 3rd quietly marked the approval and announcement of this “new” test, the true scandal is that—minus the packaging and inserts—it’s the same one that’s already been in use for over eight years (April 2004) by AIDS Service Organizations and medical professionals nationwide. Eight years? Ouch!

A Timeline of Prevention and Care

This past June marked the 31st year since the first cases of AIDS were reported in the United States. For those first blindsided by AIDS in 1981, there was no treatment; in fact, for those diagnosed they were already in the later stages of AIDS, and no matter the medicine (or money), it was too late. Today, thank G*d, that’s not the case.

In thirty-one years, we’ve seen a rapid progression of treatment, from mono-therapy AZT to the “cocktail”—the panoply of antiviral medicines, taken in combination, which eases yesteryear’s suffering. But in order to be prescribed those lifesaving and life-prolonging treatments you need to know your HIV status. To do that, you have to get tested. But in order to get tested, you have to physically go somewhere, disclose your sexual history (or histories), wait for them to reveal your status, and hope they don’t secretly judge you. Couple that quandary with epidemiology—the HIV incidence and prevalence rates among gay and bi-sexual men and/or intravenous drug users—and you’ve got a recipe for instant discrimination. Even today, getting testing for HIV is often a dreaded day to mark a person’s passage from sexually-transmitted disease naiveté to potentially AIDS-ribboned man, woman or child. The beauty of the rapid home test is that it offers true confidentiality, privacy and convenience.

The Dirty Little Secret

In 1987, University Hospital Laboratories submitted an application seeking approval of a rapid in-home blood test for HIV. In March 1988, the FDA declined to accept it for filing—a ministerial act, that in the ordinary course of the regulatory process, holds up approval (or ultimate rejection). Rather than rule on it immediately or open future submissions to hearings, the FDA published a sequence of prerequisites for future applications. In essence, it stalled the possibility of rapid in-home tests. In fact, it went so far as to state that the only rapid test applications to be considered for approval were those performed in clinical settings.

The underlying rationale? So clients could receive the proper counseling from accredited professionals in order to: alleviate confidentiality concerns, social stigma and recrimination(s) from testing positive; reduce the likelihood of a false positive (or incorrectly interpreted negative result, especially for those in the “Window Period”); get people into medical treatment sooner (rather than later); reduce behaviors endangering; help facilitate disclosure to past partners; and offer psychological and emotional support to those infected. And so Counseling, Testing and Referral (CTR) organizations were borne (as was the big business of AIDS). But truth be told, it's easy to see the motivations behind  the FDA’s initial ruling in 1988.

Public-health concerns are as slow to maneuver in and around as are rulings by the FDA and the CDC. I get it. Public health officers want to get it right the first time. But their rulings (like lots of other governmental “intrusions” depending on how you view them) often overlook Occam’s razor—the ultimate law of parsimony; or, in laymen terms, “other things being equal, a simpler explanation is better than a more complex one.” To put it plainly, a quiet paternalistic moratorium on future in-home test kits was ill-advised initially and became even more so with each passing year. In fact, it only perpetuated stigma (in my humble opinion). What held true in 1987 and 1988 didn’t hold true for 1996, 2001, 2004, or any subsequent year thereafter.

By 2004, we learned even anecdotally that when people became aware of their positive HIV status, had access to, engaged in routine medical care and began treatment, the progression of HIV was dramatically reduced, bringing us all one step closer to our goal of ZERO transmissions. By 2011, in fact, meta-analysis studies statistically showed that when we’re adherent to our medications (antiretrovirals) and have an undetectable viral load, there is a significantly (2011, CDC pronounced) reduced likelihood of transmitting the virus to others. Some data says that it can reduce new infections by upwards of 96%. So why wasn’t there a new ruling during those years? What held up a  definitive ruling on a testing technology that had already been medically proven for eight years?

The potential human toll since the FDA’s first rapid, home-use HIV test application in 1987? While averting 4,000 infections (people, mind you) per year is a best guestimate from the advisory panel, anything greater than 1 was always too many. Thirty-one years into the epidemic, it all comes back to the basics of taking the first brave step to test. And for many of us, that would have happened much sooner if we could have tested in the privacy of home.

Wednesday, July 11, 2012

Welcome

Welcome to a blog in three voices. Here we will write not about us (except that all writing is personal and self-revealing), but about where we find ourselves, this agency, its work, our clients, the community, a disease and the differences between us. In the eddy (of calm, of counterpoise). We invite you both to learn and to engage, as we try to settle rightly into the space between stillness and movement.

A line from a Pierce Pettis song (God Believes in You) goes "everything matters, if anything matters at all." It's a notion that runs through many cultures, traditions and faiths. Mitakuye Oyasin: We Are All Related. We will strive to keep that perspective as we go forward, mindful of how what we do or don't do, the courage we have, the fear we follow, the example we set, the gratitude we offer, affects everything.

We hope that you will be part of this journey. Because the path will almost certainly be better. And us wiser.