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Thirty whole years have passed since the discovery of HIV. A serious infection that, left untreated, becomes fatal. During those 30 years, as the epidemic took more and more lives, clinical research worked desperately to counter it. Yet to this day we are still losing people to it, and those whose lives are prolonged by biological interventions are still suffering under the state of health-services which are, in many cases, health-damaging rather than health-promoting. Why? Because if we are to take HIV seriously, then every action taken towards countering it must address the individual as a whole person.

We know that HIV doesn’t just affect physical health, it damages behavioural and mental health too. But sadly, all we ever hear about are biological successes in countering the epidemic, not behavioural or psychological treatment interventions. Clinical experts should be equally available to treat the behavioural and psychological health of a patient. Because in fact, what the eye cannot see is far more challenging because we are dealing with a subjective experience, not just the objective marks of the disease – so a physician, for example, would not be sufficient enough to intervene. We have to rely on the level of insight a physician has, in order for them to refer the patient to an expert in behavioural or psychological health. In no circumstance should the patient ever be given a pill on its own because illness isn’t just about the body. Also, in contrast to medication, mental treatments can never be reduced to a pill. Yes, a pill may alter some wires here and there, but really – like I said before – we’re dealing here with people and people are complex.

Put simply, a medication not does address an individual’s behaviour or the motivations for it. So, while antiretroviral therapy (ART) may have transformed what was once a death sentence into a manageable disease and reduced HIV transmission worldwide, it hasn’t stopped it; the pandemic is still expanding. And no, a ‘cure’ is not the immediate answer! See, there’s a trend here: just like a pill isn’t the immediate answer, neither is a cure.

We know ART prolongs life in most cases, but it is simply not cost-effective to keep using it and viewing it as the only solution. The costs are increasing for many organisations and public health systems and HIV is just one exemplar of this situation. Logically, the focus should shift from ‘cure’ to prevention and to making the most of what we have already. Because when used, behavioural and social interventions save a lot of money for public health systems, and they help prevent HIV transmission too. Alternatives to relying solely on medications for HIV are desperately needed in order to benefit patients at manageable costs. An integrated model of services that centres around the whole patient really is the most logical solution, as it will produce the best possible health-outcomes. Ultimately, it’s where we will save costs.

Prevention should also definitely become a priority. When I first read about the International AIDS Society (IAS) conference that was held back in July, I just couldn’t believe how much of the focus was put upon ‘finding a cure’. As if it’s going to happen any time soon, as if pharmaceutical companies aren’t still trying to tackle the complexity of the infection.

But, surely, preventing the infection reduces the need to eradicate it – so why isn’t prevention a priority? Not enough is being done to prevent the infection spreading in the first place, and a significant part of a needed solution is already clear – biopsychosocial medicine, or the integration of biological, psychological and social health-services for people with known risks for HIV. Clinical services provided specifically for behavioural and social health should overlap with public health services.

It seems like ‘prevention’ just doesn’t live up to the glamour of ‘cure’ which is so very popular in the public’s imagination. And why should it? It’s not going to interest anyone who wants to make a quick profit, is it? Well, the question that springs to my mind is: what about the patients? A far-off cure is much less pretty to those who already have the advanced stages of the infection, and have suffered enough. No, I’m sure they would appreciate better quality health-services that address their every need in order that they get better, feel better, and stay better.

Every clinician possesses an ethical duty to help patients acquire the skills and personal resources they need to practice health-promoting behaviour. If they don’t have those skills themselves, by being a psychologist for example, it’s their ethical duty to ensure that a psychologist is available. If they don’t offer their help in this way, how are patients to acquire the knowledge and skills to head for health? This is the reason integrated services are necessary; a physician is there to offer medication, but without collaborating with psychological and behavioural experts to treat those aspects of health, they aren’t empowering patients to change particular behaviours where they are most clearly needed. For instance, the prevention-targeted groups of men who have sex with men (MSM) and young adults.

Now, while it is essentially the patient’s responsibility first and foremost, we can’t criticise people for not having the inner resources to engage in health-promoting behaviours unless they have been provided the best circumstances in which to acquire them – like simply being referred to a behavioural specialist. So it’s fair to say that it’s the clinician’s ethical responsibility first.

And then there’s the darker, manipulative side to ‘finding a cure’: PR. It is becoming increasingly misleading and does a great disservice to the patients themselves. The ‘Cancer Ends With Me’ campaign, for instance, really does a disservice to people with cancer, who have the right to know how far off the cure is and what is and isn’t in their power to make that happen. It is an example of a campaign that is purely for the media’s gain and doesn’t achieve the goal of ending cancer anyway. While research is necessary now, profiteering PR is not.

Besides, the ‘cure’ being spoken of only targets a small proportion of individuals. It will be a long time before a cure for all can be spoken of. A vast amount of money is being spent on clinical trials worldwide on this quest for the Holy Grail of a cure. I think we need to be more realistic, because finding a cure will take many more years. It’s too soon to be investing so much time and effort into promoting it, especially as most of it goes on misleading PR which is detrimental and unhelpful to patients themselves. Health services should be altered to centre around the individual patient, and experts should be looking for long-term solutions such as the integrated model which targets behavioural and social health as well as physical health. We’re still left with third-rate health-services, even if a cure is found.
The search for a rapid ‘solution’ isn’t improving health-services at all, which really should be the priority. Now more than ever is the time for patient-centred standards of health-services, especially for chronic conditions such as HIV. The HIV epidemic should ideally set an example for any future epidemics in terms of how to deal with it. Currently, it’s setting a very bad example. It’s a shame, because we already know how to do it better – it’s just a matter of convincing those higher up to take a logical solution on board.

 

We’ve heard about how to address the issue of the patient voice (here), and about the benefits of asserting it with openness and transparency, so this is a good time to take a look at what is being done about it already.

 

The Tuke Institute is one of many organisations working hard to promote the importance of, and need for, patient-centred health-services. With an intensive project underway to produce a set of new ‘Gold Standards’ for HIV-services, among other projects, it’s fair to say that the Tuke Institute’s model is deeper than most. Here at the Tuke, we recognise that what’s currently being done to improve services isn’t enough, and without a collective, continuous effort, starting from the very bottom, barely anything will change. Simon Stevens is coming from the USA to take over the Chief Executive’s for the NHS, our current public health-service system, and he’ll hopefully bring with him some more constructive American values that can fight the complacency that swamps these issues. It will take a motivated and experienced leader, excellent organisation, and a willing team to make it progress.

 

The Picker Institute has been a leader in promoting patient-centered services, defining seven primary principles for patient-centeredness, including the need for respecting patients’ values and preferences, emotional support and the involvement of family and friends. They embody the shared conviction that patients’ views and experiences are integral to efforts to improve health-services. This is crucial but not enough.

 

Other think-tanks such as the King’s Fund focus around the importance of clinician-patient partnerships and believe that the patient should be seen as an active participant in their treatment. It’s also crucial, but not enough. Then there are organisations such as Patients Like Me who are key advocators of values like openness and transparency, believing the patients views and needs always matter and come first. Crucially, it links up patient-communities with scientific research to create tools that can help make a difference to the creation of health-effective services and medical technologies. Tools are what will make the change, informed by concepts around patient-centredness, and driving re-design in the delivery of health-services. The Tuke Institute has recently partnered with Patients Like Me to research the development of a comprehensive and patient-centred assessment of health-status, which can be used for identifying individuals’ health-needs, empowering patients’ voices, measuring services’ effectiveness, and reviewing where things need to change in services.
The NHS has recently proposed a Trip-Advisor type platform where patients can review the effectiveness of their health services and speak out about what needs to be changed, what could be done differently, and what is necessary and unnecessary. It’s a shadow of the one proposed by the Tuke Institute, but it’s a first step.

 

All these efforts into improving patients’ lives centre around the patient and not the service-provider. This is important in order to create a relationship between patients and their health-service providers that benefits the patient first. Promoting the patient-voice and putting a patient-centred model into practice are intended to move towards a common goal: to achieve better health-outcomes. Empowering patients’ voices is essential to provide leverage for organisational-level change.

 

Each individual patient is the only one who knows what their life is like and how illness affects them. The Patient Voice is essential to delivering health-services that are relevant and address their health-needs, not just their disease-needs. For organisational-level change, patients need to bring their voices together to make systemic change in the quality and effectiveness of our services. A good example of this is the UK Community Advisory Board which is an HIV-organisation providing a network for community HIV treatment advocates across the UK.

 

Each organisation mentioned above is part of the collective effort in addressing the need for patient-centred services. What’s missing in most are an overall, evidence-based framework for creating change, and the tools to make that change possible, starting from the patient up.

 

The tools to prioritise the patient voice are gradually being developed through the Tuke’s work. Among several projects, we are developing tools to review the health-effectiveness of services according to each individual person’s needs and experience, not just a sanitised, “Trip Advisor”-type review that is unlikely to be meaningful or effective — not least because the British libel laws need to change. We’re also creating a radically new template for clinical practice-standards in our demonstration ‘Gold Standards’ project, which focuses on patient-centred service and health-creation, not disease-reduction, for people with HIV. Using just these two tools, patients will be able to say what they need that’s relevant to their own lives, and also voice their reasonable expectations about what a so-called “health”-service should deliver.
Change has to occur at every level of health-services but the NHS has tried top-down approaches and they don’t work: there are too many vested interests in the way of meeting patients’ needs. So, here at the Tuke Institute, we’re starting at the bottom instead of the top, with the patients’ experience and voice, translating those into change by developing tools to make that voice heard in co-designing and co-delivering effective health-services. Ours is a unique approach led by personal experience with chronic conditions and empowered by the knowledge of our scientists and advisors. Starting at the bottom, bringing the patient’s voice every step of the way, is the only way to create real organisational change.

Imagine a world where becoming ill led to you being locked inside a hospital room in complete darkness, strapped to a bed used more times than you’d like to know, alongside patients with all sorts of diseases and only one foul-mouthed nurse to help you all. And every time you scream, or call for help, no words come out. You are silenced and helpless, isolated and consumed by your illness.

 

It sounds like a nightmare scenario, but its close to how some patients feel about their health-services: helpless, dealing with the same situation many others are in, offered no alternatives, often having only one person to ask for help and feeling completely alone.

 

If the people who felt like this found a way to ask for better, would they be given better? Hopefully, and if they asked for help as much as possible they’d be given the answers to everything they wanted to know – so they’d feel as much in the light about their condition as the experts are.

 

The patient voice is fundamental in changing health-services for the better, and it has been recognised and promoted by the Tuke Institute, the Francis Inquiry and other government inquiries, patient organisations such as PatientsLikeMe and the Picker Institute, among many others.

 

Patients should be able to participate in their services fully, not just in their treatment. Their voices should be asserted in order to be heard clearly, and they should be confident enough to raise delicate issues. Participation means complaining when services aren’t good enough, actively changing behaviour and ultimately working out what works for you and what doesn’t. It achieves a more efficient and effective recovery, enforces prevention on primary and secondary levels, and creates a better health-outcome.

 

Participating and asserting the patient voice, and incorporating the values of openness and transparency, are key to online communities (PatientsLikeMe, myHIV, HealthTap, Inspire, etc.) which help greatly to reduce feelings of isolation and loneliness. Patients realise they’re not alone, and that their experiences are more common than they imagined.

 

The coming together of the patient voice means empowerment, personalised services which are more effective and address the whole person, co-ownership of the process and shared responsibility for outcomes, confidence and trust in health-services, and a higher self-confidence to change things in the self and others.
It ultimately creates a vision for the future, one seen in the works of The Tuke Institute which, as a whole, considers the whole patient and every aspect of their journey. It is clear that there is a fundamental need for health-service reform, and that all patient needs should be addressed for a better overall health-outcome.

As someone keen to rise in the field of medical journalism, I am constantly scanning news stories for the latest in medicine, health, science and technology. However, too often I come across bizarre headlines and over time I have learnt to pick the reliable ones from the unreliable ones. What struck me is that there seems to be two types of journalist: one with good intentions, and one that is clearly out to manipulate stories to meet their own ends. Both aim to engage the public but the ways in which some journalists do cannot be justified. Surely the qualified journalists and scientists who represent the world of science are required to do so correctly, and truthfully? While scientists are motivated to represent their results in the best possible light, they also face the increasing pressure put upon them to achieve the best outcomes, so that some are prone to exaggerate, cut information and jump guns in order to portray what their funders and the public want.

 

While good-willed journalists wait patiently for reports to be released from the labs and for the embargoes to lift, there are those who are simply trained to exaggerate their stories in order to make profit and impress the higher-ups, without a care for the people who hang on to their every word of promise and assertion. They take full advantage of the lenient laws regarding content in the media, and once out there it’s difficult to retract any story that does cause damage. Faith is raised in those who grasp upon any sign of hope, faith in the only people that have the power to show it to them, and once the deception is realised, seeing that the real breakthroughs are yet to come – the trust is lost and the emotional damage is done.

 

There’s nothing wrong with an attractive title, but headlines such as ‘Finally! A Cure for HIV!’, ‘HIV Cure For All’ or ‘Doctor Discovers Miracle Cure’ all sway from the truth because they twist the results of the latest scientific study to a story more appealing, and more profit-making. Most of the headlines in the media are harmless to an extent, but these particular types of headlines are diminishing for struggling patients that look to any form of hope for the future and improvement to their health. So why on earth is the media still getting away with it? Especially as they’re reporting from the mouths of the people that terminally ill patients are trusting with their lives.

 

I recently read Dr Steve Taylor’s blogs on http://www.huffingtonpost.co.uk/dr-steve-taylor/ which include the noteworthy entries ‘How HIV Stigma Kills’ and ‘Stigma, Complacency and Ignorance in the Fight Against HIV’. They provide insight into the prejudice that still exists, and the dangerous attitudes of those who aren’t afraid of catching HIV because the treatments are available. Headlines that suggest a cure that’s “free for all” only serve to consolidate this complacency.

 

In his latest blog, titled ‘A Cure for HIV: Really?’ Taylor comments on the International AIDS Society Conference held in Malaysia early July. A scientific study was presented at the conference, involving three HIV positive patients from Boston. Although one patient died during the study, the other two had their blood tested following treatment for cancer where they’d ceased to take their HIV-treatment medicine, and no infection was found.  Despite appearances, the study is not ‘progress’ for HIV-related treatment. It is indeed a step towards an HIV-cure but not at all relevant for those already coping with the infection.


Thinking back to the Mississippi baby case (http://www.bbc.co.uk/news/world-us-canada-21651225), media reports were rife at the time with claims that this case would change the HIV treatment paradigm and prevent further infection in babies. The study’s author, Dr Deborah Persaud claimed it would “transform our current treatment practices in newborns worldwide”. The fundamental mistake made is the fact that it inflated the hopes of individuals. Physicians were suddenly on demand for a cure that doesn’t yet exist, and hopeful patients were sent away disheartened, and confused. Taylor, who commented on this issue in a blog entry, asks the question of whether the case details were prematurely released into the media. I strongly support the fact that they were, because the primary concern should always be about the patients’ needs, and not about existing practices.

Examining the latest developments in HIV-related research, leading international HIV/AIDS experts attended the 7th International AIDS Society (IAS) Conference on HIV Pathogenesis, Treatment and Prevention in Kuala Lumpur, Malaysia in July. They explored how scientific advances can inform the global response to HIV/AIDS and opened the conference with the World Health Organization (WHO)’s 50 new recommendations on biomedical approaches to HIV infection, including recommendations on HIV testing, using antiretroviral medications for prevention, linking individuals to HIV care and treatment services, initiating and maintaining antiretroviral therapy (ART) and monitoring treatment. While their recommendations suggested progress towards more effective prevention and treatment generally, they did not focus on any specific population. This is a problem because, while they’re making technology generally applicable, they’re not looking at the needs of specific populations and working from there to identify the particular solutions needed. Although the solutions include biotechnologies, biotechnologies are not a general answer because solutions lie in the particular not the general. This is echoed in the calls for personalised medicine and even (in molecular biotechnology) personalised medications.

 

Medicine works by creating solutions that work for a specific individual, as opposed to public health which works as a “one size fits all” solution for populations. Physicians and biotech often confuse the two, putting the cart before the horse by making biotech lead health-services. Biotech should be there to support health-services, not the other way round. Biotech products can never be the solution for everyone because they do not address individual people and contexts. This is a problem that needs to be addressed because while the vested interests of commercialism look to impose their perspectives on health-services, their raison-d’être is to make money first, without a view to helping individuals in the long-run.

 

This biotech-based approach is what drives the specification of treatment-standards without reference to the necessary service-standards. We know how to treat an HIV infection, but we clearly don’t know how to treat a person with HIV. That’s why the transmission-rates continue to rise as do the illnesses that come alongside HIV, including Hepatitis C, depression, and so on.

 

Because of this, we are doing a project into the standards of services, led by researcher Luke Sleiter from New York. The project’s aim is to show how services can be more effective by providing standards for the treatment of the patient, not just the infection. The data show that treating the infection is not enough – as with Hepatitis C, where up to a quarter of people who are cleared of the infection become reinfected in some clinics, because basic mental, social and behavioural issues have not been addressed.

 

I am working closely with Luke as communications intern to launch a ‘Patient Voice’ campaign whereby the patient feels empowered and participates in their treatment program by voicing their individual needs. This also relates to the ‘Rights and Responsibilities’ research at the Tuke which is building upon a new framework that enables rights and responsibilities equally. This is key to the effectiveness of health services provided.

 

The WHO conveyed to the IAS conference that their guidelines include expanding the use of ART medications from treatment of the infection to prevention of the infection. However, they lacked any guidance as to how and if at all to treat the behavioural, social and mental health of people with HIV, and given that HIV is a pandemic driven by behaviour, this is short-sighted.

 

At the recent ‘HIV at 30’ conference at Cumberland Lodge, Chairman of the Tuke Institute Dr Rupert Whitaker mentioned the necessity for comprehensive and integrated services. This again refers to individual needs and social, mental, behavioural as well as physical health-services which are essential for helping a person get well in the sense of the WHO definition of health which states: ‘Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.’

 

Rupert Whitaker commented on the subject recently, asking this vital question: “As patients, we have been assured by physicians that medication is all we need in response to serious sexual infections, such as HIV. However, pills are clearly not enough to solve the problems of infectious epidemics, we should routinely include behavioural medicine in health-services, because HIV is about behaviours like sex and drug-use” While pills fix the infection short-term, the patient might not have actively changed behaviour, and this can often be unnoticed for long periods of time while it is assumed by the physician that the patient is recovering and is acting in his health’s best interests. It isn’t until it is specifically requested, or offered upon observation, that the need for behavioural medicine and real change comes into the equation. This is fundamentally wrong; because there is the possibility that a large extent of patients who suffer with mental, social and behavioural issues alongside their physical illness go unnoticed, and therefore unhelped.

 

The rise of pills and biotechnologies as the sole answer to human needs and infections is dehumanising and, while the intentions of these are mostly good, they’re only part of the solution to better health because they don’t incorporate the human element and treatment that so many people require. By ‘human element’ I mean the involvement of mental, social and behavioural treatment that keeps a person healthy all-round, and not just physically.

 

by Luke Sleiter

It was easy for me to complain to my mom and brother when they picked me up outside the clinic about all the things I disliked about my experience at the clinic. But the real challenge comes when I try to imagine what I would have actually wanted to happen during my medical consultation to make me feel healthier and more satisfied.

So I’ve devoted a lot of thought to what I would imagine a productive and health-affirming visit to look like. And I must admit that I’ve hit a wall.  I’m so accustomed to feeling dissatisfied and powerless in my interactions with physicians that I haven’t really given much thought to how I would stage and direct a clinic visit. My imagination simply stops there. I don’t know if it’s a symptom of cynicism or pessimism or lack of creative visualization, but I can’t for the life of me figure out what I would like to get out of an interaction with a physician that would actually leave me feeling better. I keep writing different scripts in my head and can’t seem to land on the right one.  Here are some ideas that arose out of my most recent experience:

At first I thought it may have been nice to have been asked what I would have liked to have gotten out of my visit.  Well, that would have left me stumbling over my words and unsure of what the physician was really asking me.  I would have wondered if I was being tricked into suddenly being responsible for something I wasn’t able to deliver as a panic-stricken patient. This scenario becomes a health-related consumeristic conundrum–the desire to be treated as a passive customer, while at the same time wanting to feel empowered to express what I need in order to feel better.  Perhaps a more collaborative approach by the physician would have changed this.

Then I thought about what it would have been like if the physician had flat-out asked me what he could have done to ensure that I left the clinic feeling healthier and happier.  I would have needed more time to put together a list–and that list would have included things that reach far beyond the scope of what any physician would be capable of doing for me. Could a physician make me feel more financially secure, or find me a rewarding job when I graduate, or calm my fears about long-term adverse effects of my medications?  I seriously doubt it.  Feelings of health and happiness extend far beyond a visit to a clinic.  This brings up all sorts of confusion about how well I know what is best for me and what the physician might know that is best for me.  I don’t know where to draw those power-knowledge lines.  I guess it’s a lose-lose for the physician.

So I imagined whether I would have liked the physician to have snapped on those purple latex gloves, touched the bug bites, and closely examined my skin.  I mean, it’s certainly not the most comfortable thing to have a stranger’s hands on my body, searching for answers through poking and prodding. There’s an acute awareness of the existing power differential when I’m passively standing naked in front of someone who’s fully clothed and examining my body.  It makes perfect sense that this sort of vulnerable experience doesn’t exactly get people running to their next medical appointment.  But at the same time, I was upset that he didn’t touch me or really look closely at the bites. I thought that was what physicians were trained and paid to do.  Even after the awkward partial strip-tease I went through to show him the bites, I left indignant that he didn’t do a more thorough exam.  I was conflicted.

I then wondered if I would have felt better had the doctor asked me a list of questions pertaining to my presenting symptoms rather than me feeding him a long list of questions I’d typed up on my smartphone. Leading our discussion should have felt empowering to me, but instead it left me feeling like I was doing all the work and wasn’t being met with an equal level of effort. On the one hand, I was glad I could share my own medical theories. But on the other hand, I felt that he wasn’t actually hearing what I was saying. Even if the he was hearing the actual words coming from my mouth, he wasn’t concerned about the emotions behind them.  I was at Urgent Care, after all, so I was obviously feeling a sense of urgency, if not outright panic. But he didn’t once acknowledge that my long list of possible causes for the rash or my eagerness to jump in and offer solutions to the problem could have been symptomatic of my anxiety and need to leave the clinic with a better collaborative understanding of my condition and concerns. Maybe some basic empathy or sensitivity could have turned things around a bit.

My final wish was to have left the clinic with a prescription in hand in case I needed to fill it later. After all, it may have been comforting to leave the clinic holding something in my hand–proof that someone had taken the time to write something down or given me a backup plan. But, then again, I may have interpreted the act of writing a prescription as a typically dismissive pharmaceutical response to an unanswered question. How dare he just pull out a prescription pad and hand something off to me to pacify me!  Yet another example of a no-win situation for the physician.  There were obviously other needs that weren’t being met in order for me to feel so conflicted about not having a prescription I wasn’t even sure I needed.

And so the confusing script continues. It’s pretty obvious that a lot of soul-searching is required to fully understand the complexities of just one visit to an urgent care physician. Maybe that’s where the problem lies–that imagining a healing and satisfying visit to a clinic is far beyond the scope of my experience.

That’s precisely where I need to start when thinking about new standards for medical visits–in a creative and imaginative place.

by Luke Sleiter

As I was about to leave for the Urgent Care clinic in a suburb of Minneapolis with what could have been anything from hundreds of harmless non-itching bug bites to a potentially fatal rash from the mood stabilizers I’ve been taking for years, I was explaining to my brother why I hate “going to the doctor”:

I don’t like giving my personal information to someone sitting across a check-in counter with other patients and clinic workers within earshot.

I don’t like being asked to recount my entire medical history.

I don’t like explaining all the medications I take and justifying why I need to be prescribed controlled substances to help with anxiety and depression.

I don’t like stripping down to my underwear in order for the physician to ask me the same questions the nurse just asked me.

I don’t like trying to make the physician feel like she/he is doing a good job when I’m the one doing all the work.

I don’t like receiving even less information than I got from an internet search for my symptoms.

And I don’t like leaving the clinic feeling like nothing has been accomplished

 

Not only were all of these concerns confirmed; but I also left the clinic with some new reasons for why I dislike such visits.

The physician asked me very few questions. He awkwardly told me I could show him my bites “however [I] felt most comfortable” (so I ended up feeling like I was doing a medical office strip tease). I fed him an exhaustive list of reasons I thought I might have this condition and he hemmed and hawed over why he didn’t think it was related to (a) a recent increase in one of my medications, (b) recently starting an entirely new medication, (c) swimming in lake water, (d) spending an hour in a hot tub, (e) a recent cold sore after fifteen years without a herpes simplex outbreak, (f) recent aches and flu-like symptoms, (g) a trip to Brazil a few months earlier, or (h) bed bugs.

Without putting on gloves or getting near me, the young physician suggested I may have hundreds of harmless bug bites of some sort and that I should take pictures of them to watch for changes. If any changes occurred, I was to come back to Urgent Care and start the whole process over again with a different physician.

I left the clinic with no new information, no recommendations for home remedies, and no prescription in case things got worse.  Instead, I walked away with that familiar sense of discouragement, outrage, powerlessness and frustration.

That is why I hate “going to the doctor.”

 

How would I have liked my visit to go?  Check for “Why I Hate ‘Going to the Doctor’ – Part II.”

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.

So we’ve looked at rights. And we’ve examined responsibility. And somewhere in the kaleidoscope of both concepts we find that we need some kind of dialogue— some kind of synthesis that will let the individual with HIV say, I am a person with dignity and rights, but I am also a rational person capable of taking responsibility for the things that I do. And being human is all about this synthesis. About receiving and engaging. The challenge is that, let’s be honest these things don’t play out perfectly.  In the normal runnings of life it is oftentimes easier for us to say, I am owed this, rather than taking responsibility. Or maybe, for some, it is the reverse. Perhaps reacting to guilt and stigma reduces the person to say, I am undeserving of any rights; I need to shoulder this whole thing alone. But neither extremes work to the advantage of the individual as they try to get well and stay well.

Why is this? What are the issues if I say that my rights hold the trump card on any responsibility? Here we are saying that what we are owed holds the ticket to our health. If I am given access to the limitless medications that I require, if I am given top-notch health services that address my body, my mind and my social challenges, then I will get better. To a certain extent, yes! We need to have the health services necessary to enable people to get better. We need to have medication for people to take. But this is all still passive. It’s reaching out empty hands without moving our feet forward. And perhaps it comes out of experiences— from feeling like people have not taken these issues seriously before. Or from experiences of stigma, of isolation, of disempowerment, of frustration with people who don’t seem to understand the challenges the individual is facing. But I don’t think it works. Not fully, at least.  Because any sustainable action requires movement. Something that takes us from one state of being to another. From being sick to getting well and staying well.  And that means that we need to move our feet. Which means that we need to engage responsibly.

But what happens if responsibility then gains the upper hand? What happens when the human being becomes defined by what we are expected to do morally instead of what we are? A shell of a creature with muscle and motion sustained by neither intrinsic worth nor dignity. And this is equally, if not more, problematic. Because this can give rise to incessant demands. You deserve this if you do this. And that isn’t the point either, is it? Instead of addressing the intrinsic dignity of what we are, we receive endless lists of what we ought or ought not to do with our sexual lives, how we ought to conduct ourselves with each other, how we ought to take care of our bodies, our mental health and our social interactions. It seems reductive as well. And unsustainable. And can cause significant challenges if responsibility becomes another series of hoops that we have to jump in order to feel like we are worth something. If you do this, then you will be deserving… But self-worth should be intrinsic and supported by behaviour, rather than something just permitted by behaviour.

So what am I trying to say here? That neither rights or responsibility work? Not really.  Perhaps more that we must hold them in a delicate but intentional balance, and allow them to operate side by side, in co-operation with each other. We are endowed with dignity. The Universal Declaration of Human Rights states that clearly: ‘All human beings are born free and equal in dignity…’ (UDHR, 1947: a.1). But we are also endowed with a capacity to act rationally. And with these two things working in conjunction, I believe that it is possible to approach a model of health services that will not only enable the individual to get well, but to stay well. A model of health where we say, I deserve the best possible services. But I also deserve to take care of myself, because my life has intrinsic value. I deserve to rest. I deserve to engage in a community that will support me and take me out of my isolation. I deserve the best possible treatment. But I also deserve to know how to engage in safe sexual practices, so that I can have a health sex-life that contributes to my overall well-being. I deserve to educate myself. And I think the exciting thing is that these two concepts, rights and responsibility, were made to work perfectly with each other. And as they play out in balance and synthesis, they are able to provide a framework that brings the individual from sickness to a state of health that is integrated and therefore sustainable.

Human Rights

 

An important part of the research that is presently being done at the Tuke Institute is surrounding the area of HIV rights and responsibilities.  It first seemed a rather straightforward task of examining and weighing how we are responsible for our own wellbeing (think ‘agent responsibility’). But I don’t think I realised the breadth and depth of ethical ground that this topic could (and would!) cover.  When research covers a topic such as this, the interviewing process brings out a plethora of experience and challenges. Which makes the whole project all the more engaging, because you quickly realise that the words you are writing are more than black-and-white ink jotted onto a page. They come tied to individuals’ life experiences, and the struggle, pain and wisdom that comes with this. Similar to the practice of medicine, the study of HIV really does affect people’s lives. So examining what the basic challenges are in trying to map out HIV rights and responsibilities can be rather expansive. There have, however, been common themes that have threaded their way through critical analysis and interviews with key decision-makers and opinion-leaders in the field: namely the problematic definitions of rights, the concept of stigma and self-stigma, teaching skilled health behaviours, and the influence of inadequate sexual education on the individual’s ability to get well and stay well. Not only do we need to ‘get’ the right information together. We also need to frame it in a way that can have a real, positive effect on the individual’s life.


But how does how we define rights and responsibilities, this seemingly conceptual sphere of academic banter, actually affect how we live our lives? How we go from sickness to health, and a health that lasts? Funnily enough perhaps, both are connected in this process. For as we examine what my rights are: rights to food, shelter, education, or in the case of HIV treatment, rights to adequate information, medication, rights to the most effective treatments and modalities, we are creating frameworks that are based on something — that ‘something’ being our understanding of what is a human right. And the tricky thing here is that this is a conceptual task with huge practical significance. We need to say, ‘if we’re to do X, then we need to do Y first’. So first we need to define what is essential for the human to live well, or at least in some elementary capacity, to live. Then we can figure out what we are owed, i.e. what kind of rights we need. Or what others are owed. We can’t figure out what our health systems need to provide for their people, or what we owe each other, unless we know what our basic human rights are. So defining rights here is crucial, and yet, as we see in a lot of activism and rights-based research, we often stumble on what may seem to be competing rights. That is, my claim may seem to be staked irreconcilably above or in opposition to your claim. A clear dialogue and ‘mapping out’ of what rights can honestly and realistically be asserted based on a unified definition of human well-being in some primary form is needed before this research can proceed.


Another challenge in researching HIV rights and responsibilities has been unpacking and clarifying the psychological concept of stigma and self-stigma and the relevance to its effects on the well-being of the person with HIV. There are ethical consequences to the stigmatisation of people, as we classify and label others, and as individuals classify and label themselves, we (and they) are engaging in a dangerous game of judgment. You are ‘this kind of person’, I am ‘that kind of person’, and we are therefore different. A game of judgment with an ambiguous measuring device that leaves individuals feeling isolated, hurt and angry, and directly impacting psychological well-being and behavioural adherence to medication. What, why and how would the judgments be used? This is difficult, because while stigma can affect the overall running of public health services (who is deserving, and therefore, who will receive the increasingly rationed treatments?), it can also affect the individual at a profound level in which these same questions turn in on themselves and isolate the individual from themselves (‘I am not deserving and therefore it doesn’t matter if I do things that harm my health because they feel good’), leaving the individual feeling helpless to face the reality of the situation that they are in (more on this in the guest-blog on stigma). So understanding the ethics of labelling and how these judgments are being distorted is key in developing this effective framework that can say ‘this is what I can claim about my health, and this is what I need to do in order to get well’.


Finally, there are the challenges of inadequate understanding of the issues, which then translate into counter-productive conceptualisations of responsibility. This, it seems, could be quickly and easily dealt with through providing access and resources to people who have been diagnosed with HIV, and indeed we find that organisations such as the Terrence Higgins Trust are doing just this. What remains a challenge is therefore maybe not what is being distributed, but rather how people are processing and taking on board this information that is available to them (or if they are). Then it becomes a matter of people actively putting themselves into the narrative that is going on here, owning a part in the discussion and realising that this is actually something that is important to both their own health and the health of others.


As I stated before, these are only a few challenges that have been generated from this discussion on HIV rights and responsibilities. And, with any important topic, the dialogue extends far beyond the short questions and comments that have been left here. However, as we continue to delve deeper and look further, as we continue to bring troublesome hindrances into the light of critical thought and mature discourse, I think that the knots will begin to unravel and we will be able to outline a framework that deals with previous challenges and enables the individual to more effectively weigh their role on their path to well-being.

English: Map showing HIV-1 subtype prevalence ...

English: Map showing HIV-1 subtype prevalence in 2002 (Photo credit: Wikipedia)