I met up with a friend last night for some happy hour appetizers at a nice local Mexican restaurant in Williamsburg.  Since we last saw each other in May, he’s traveled to Kenya, attended a family wedding in New England, and twice visited his family in their new home in Georgia.  I, on the other hand, have stayed with family in Minnesota for more than a month, attended a lavish wedding in Santa Barbara, California, and become deeply involved with an internship with the Tuke Institute.  My friend and I had so much to catch up on over cheap margaritas and guacamole.  After we escaped the crowds of hungry hipsters, I was able to finally see his midtown apartment for the first time as we chatted for a couple hours about what we’ve been doing and what our future plans are.

As our conversation shifted to things like food insecurity, the perpetual turmoil that plagues most of the continent of Africa, the rapid urbanization of China and Nigeria, and other such topics white New Yorkers talk about in their high-rent, high-rise apartments, I began to tell him a little bit about the HIV standards we are developing at the Tuke. I explained how Rupert (Whitaker) and I came up with a list of things that people with HIV need, regardless of their location, socio-economic position, race, gender, etc.  I told my friend how when I first started populating the list, I stuck to the safe and familiar–the list that includes mental health services, physical health, and a collaborative team of providers. When I spoke with Rupert, however, he urged me to think outside of that box–to consider that people with HIV want and deserve things like happiness, fun and safety. My friend laughed at that notion and exclaimed, “well everyone wants those things!” as if it was a ludicrous notion to pursue. I retorted that that was the whole point…that people with HIV deserve things like happiness and confidence and freedom from stigma…just like any other person in any part of the world in any situation. Happiness and safety will look quite different in Accra and Santa Barbara and Minneapolis and rural China, but those are the intangible things that all humans should have access to. Those semi-abstract needs are the things that make us human and connected and give us meaning. Without those things, we live fearful, hopeless, and isolated lives.

But the conversation left me feeling worried about these new standards we are setting. If my close friend in my public health program laughs at these ideas, what will my instructor and other classmates say? What will physicians and others clinicians think of these standards? What about policymakers and public health officials? Are these things even worth talking about and addressing when the world’s problems are so big and unmanageable? If we’re trying to address HIV guidelines, are we thinking too far outside the realm of possibility by addressing these issues?

Then this morning I woke up to a New York Times article that my best friend sent me. It was written by one of the children of the mutli-billionaire businessman and philanthropist, Warren Buffett. Although the article was a provocative critical analysis of “the charitable-industrial complex,” it really spoke to me and addressed something very important to my internship.  Peter Buffett eloquently states that:

“It’s time for a new operating system. Not a 2.0 or a 3.0, but something built from the ground up. New code.

What we have is a crisis of imagination. Albert Einstein said that you cannot solve a problem with the same mind-set that created it. Foundation dollars should be the best “risk capital” out there….

Money should be spent trying out concepts that shatter current structures and systems that have turned much of the world into one vast market….

It’s an old story; we really need a new one.”

These thoughtful and challenging quotes truly inspired me and gave me the “hope lift” I needed to continue pushing through the mire of stale thought and poor health standards I have quickly learned comprise the majority of health research and guidelines. I was ecstatic to hear someone speak to the necessity of pushing the boundaries and recreating the way we approach the world’s toughest challenges. Peter Buffett urged me to stop reinventing the square wheel and to start over. If we don’t start from scratch, we make the same unimaginative mistakes and continue contributing to the mess we’ve already made of things. Mr. Buffett reignited in me a flame that was fading. He restored my passion for and faith in what I’m doing and refreshed my memory as to why our work is essential to health and humanity.

10 Dec 2010 01:14
Recently, I was asked to lead the response of the British Psychological Society to the Scottish Government’s draft standards of services for people with HIV. The standards were interesting, confusing, and not a particular surprise. Mostly, they were about what the NHS thinks people with HIV need rather than being based on the experiences of having HIV. They also were far from “evidence-based” (excuse the jargon) in that they were primarily about what the NHS thought it might be able to provide and focused on treating the virus more than helping people get well. Really, they don’t seem to know the difference. As such, it is difficult for us to call these standards. 

Still, they did show an interesting nod towards behavioural and social issues. Now, when you realise that HIV is an epidemic caused by behaviour, fed by social inequalities, and affecting people even more than bodies, it’s quite stunning that these standards still reflect the old, physician-centred model of services. An historical perspective is useful here: before 1996, when physicians had very little to offer, the HIV-affected community participated quite deeply in the services, which were about people. There were integrated physical, mental, and social services, albeit still within the rickety NH-framework, but they were very successful given the limit of what could be done at all. Nice of them to share the responsibility. After 1996, when effective drugs came in and made it possible for us to live a lot longer, the NHS as a whole reverted to physician-centred services, with ancillary staff (literally, ‘handmaids’ to physicians). Nice of them to take back control. 

OK, everyone who had survived was deeply burned out and wanted to make the best of the good news. But the subsequent expansion in HIV-infection rates and related illnesses over the last 15 year have shown this reversion to a physician-centred model of practice to be unwise. Now, we have a whole new generation of people with HIV. Surely, patient-centred services are necessary to help people stay and/or get well? It’s not the virus that suffers from chronic illnesses—particularly clinical depression, addictions, other (often sexual) infections, heart disease, diabetes, metabolic and kidney diseases, and cancers—it benefits from them. And, just like HIV, most of those diseases are related to either specific behaviours or their failure. 

The Scottish draft standards brought this into full view. HIV is an infection transmitted by behaviour and—like every other chronic illness—has long-term physical, mental, and social consequences for those of us infected and for the people who support us. So, if publicly-funded medical services are hoping to create health, then they need behavioural medicine to be up there at the front. It’s nothing more than what the scientific literature says, as my own research on this issue for the Tuke Institute shows. But how on earth does one prod a government to raise its eyes from such comfortably low aspirations and look, instead, to serving the public? 

Hmmm…. quite. Hold that thought.