By definition, paternalism is an action performed with the intent of promoting the good of others, but occurring against their will or without their consent.
In medicine, it refers to acts of authority by the physician in directing care and distribution of resources to patients (definition courtesy of the American Medical Association-Journal of Medical Ethics, July 2012 edition). In the setting of Social Work, the National Association of Social Workers Code of Ethics states the following: “Social workers may limit clients’ right to self-determination when, in the social workers’ professional judgment, clients’ actions or potential actions pose a serious, foreseeable, and imminent risk to themselves…” (standard 1.02).
Paternalism in medicine, social work and HIV care is the subject of my article. We are seeing rapid change in HIV treatment, with the advent of Treatment as Prevention (TasP), Undetectable=Untransmittable (U=U), Pre-Exposure Prophylaxis (PrEP), Post-Exposure Prophylaxis (PEP) and anticipated revisions to the maternal/fetal transmission guidelines and breastfeeding guidelines.
With change can come many things: excitement, anxiety, relief, joy, stress and even fear of the unknown. But from my perspective both as a long term professional in the health care environment and as an HIV patient for almost 25 years, things are drastically different this time. There is an anger that I haven’t seen since the early days of the AIDS crisis; an anger that is erupting in many cities in the United States, Canada and worldwide.
The one key thread I am seeing in this anger is the concept of paternalism.
So why this anger now? I think that we need to mix in a bit of a history lesson to understand this, as we have cultivated this bitter fruit for a very long time.
Early on, during the first years of the crisis, when there wasn’t a lot of good information about how the virus was transmitted or really what the virus even was, there was what I like to call a blind panic. Many of us who are of a certain age can remember it. Some bars went to using disposable plastic cups for serving drinks, bathhouses were shuttered in many major cities and gay men were labeled vectors of disease. Healthcare providers who were diagnosed as HIV-positive had their professional licensure suspended in many states/countries and funeral homes refused to bury deceased victims of HIV.
The list goes on and I am not going to go too deeply into the sordid details. However one thing that started to occur was that in many cases, physicians, public health agencies, social workers and the then-emerging HIV service agencies started inserting their collective judgements, rules, regulations and policies into the lives of those that they served on a daily basis. Some of these rules were based upon the requirements of the funding sources/governmental agencies that provided them oversight. Others were based upon what religious group the agency was affiliated with, because back in the early years the churches inserted themselves squarely into the middle of the epidemic and they came to it with their own biases, based on their own religious viewpoints.
There was no cure, no real treatment and not much knowledge. People were becoming catastrophically ill and in most cases they were dying. Because of the death, the destruction and the sheer enormity of the problem at hand during the early years, many of the physicians, agencies and government services that the HIV community dealt with developed a caretaking role. For a while that role may have been necessary.
I worked at Saint Vincent’s Hospital in New York City. Those of you who know the history of HIV care in NYC will know about St. Vincent’s. It was the place where a large portion of Manhattan and the HIV population of NYC came for care. It was the ground zero for HIV/AIDS care on the east coast. I can’t tell you the number of times in New York City I paid for cab rides, prescription co-pays or other bills for patients (all against policy) just so they could get care, adhere to treatment or make their final days a bit easier.
I also worked at a smaller but no less important facility in Albany, N.Y. In Albany, I used to work with a friendly funeral home to get people buried, sometimes out of my own pocket.
Paying for approximately 40 funerals so that those patients that I had gotten to know so well would not wind up in unmarked graves in potter’s field was wrong. Professionally, I was wrong. I had crossed the line. To me, it felt like the right thing for me to do, based upon the circumstances of that extraordinary time.
That brings us to today. Over time the agencies that we deal with have in my opinion had a hard time transitioning from what they started out as, people who were thrust into a complicated quagmire of a full blown crisis into the modern versions of what they are today. They are also dealing with rules that were originally written and guidelines that were conceived for the early years of the AIDS crisis. They have not kept pace with the times and the evolution of the disease into a manageable chronic health condition.
The treatments have advanced, patients are doing better on drug therapies that are improved but the agencies and the providers that deal with us are still treating us like it is 1985. For a period of time the AIDS Healthcare Foundation, one of the world’s largest HIV drug and medical care providers was using advertising targeting PrEP as a “party drug” and has publicly disagreed with the U. S. Centers for Disease Control.
But the perfect example of this is the absolute burying of the Swiss Statement and affiliated research for 10 years, along with the reluctance of the international scientific community to accept that undetectable = untransmittable until a very dedicated and hardworking group of HIV+ individuals led by Bruce Richman drove the U=U campaign forward over the last calendar year. And even some groups that have signed on as supporters of the U=U campaign (in other words they signed the consensus statement) are still not teaching their clients, nor are they providing the general public information about Undetectable=Untransmittable.
At the same time, many people living with HIV are saying they feel ignored by “their” HIV service organizations, that there is a lack of input from the client population and that when decisions are being made, those making the decisions are not from the affected community but instead are either social workers, medical providers or other interested professionals who “have the best interests” of the community at heart.
An example of this caused international outrage in recent months following a legislative hearing where Georgia State Representative Betty Price discussed quarantining HIV-positive individuals as a method of controlling both costs and the spread of HIV.
Information has become free flowing in ways that were never imagined at the infancy of the AIDS crisis, but our agencies, our policymakers in government and our healthcare providers seem ill prepared for the new generation of educated and well informed patients they now face. And even newly graduated professionals have been trained to have a sense of paternalism, a sense that they know better than their patient what is best for them. This is however, unethical.
What are some of the reasons for this dysfunction in our relationship with our providers? I think it comes down to these six items:
1 - Tradition: This is the way we have always done things so why change now. People, groups, organizations are always resistant to change. Change is a scary thing and as we grow older as a person or as an agency/organization we are resistant to change.
2 - Regulation: The regulatory agencies that oversee the HIV treatment providers/agencies are still stuck in the 1980’s. Many of them have failed to keep up with the times with advances in treatment and where they have updated items it has been done piecemeal rather than a top to bottom comprehensive evaluation of every policy/rule/procedure/process. For example, drug lists have been redone by most every government, but criminalization statutes have not.
3 - Funding: No one wants to upset their funding sources. Every agency has to face this fact, Payroll is expensive and so are the lights and the heat/AC. Many funding sources provide their funding with strings or the values and morals of the source attached but there is a moral imperative to provide accurate and relevant information to all of your clients. Otherwise all you’re really doing is prostituting yourselves out to your funding source.
4 - Avoidance of Controversy: Sometimes speaking the truth or adopting the latest science comes with some controversy. In the early years most groups were not afraid of participating in protests. Now if protesters show up outside of a client service agency the agency will call the police on the protesters while telling them they aren’t following the proper client grievance procedure.
5 - Fewer HIV-positive patients means that agencies will work themselves out of a job: This one is a hot button item and I know that I am going to get a lot of heat for this statement. But think about it for a second. With double digit reduction of new HIV cases in many large cities in and many clinics in the United States that used to specialize in treating the HIV-positive are now qualifying themselves as Federally Qualified Health Centers and opening themselves up to every kind of patient. Their argument is that they get higher reimbursement rates from insurance companies and that argument carries a lot of weight. If you have a decreased stream of HIV patients over time because the older HIV patient population starts to die off due to age, plus the newer supply of patients decreases due to use of PrEP, PEP, TasP/U=U, Condoms and Safe Sex education, Early Treatment and Early Testing initiatives then you are starting to impact a multibillion dollar industry in a negative manner. No one likes to work themselves out of a job. But HIV patients are complaining of longer wait times and decreased services.
6 - Paternalism/Stubborn Tendencies: As a whole I think that 99% of the people involved in day to day transactions with the HIV community are good people who have huge hearts and want to do the right thing. Discounting item #5 above for a moment, I think that everyone in the industry needs to remind themselves that the substitution of their judgement or their agency’s judgement or moral compass for that of their client is wrong and that it needs to stop. It is the client’s life and the client should be provided with 100% factual information, complete information and the client should be allowed to make an accurate and informed decision.
How do we address this issue?
First, I think it is imperative that the agencies HIV-positive individuals deal with on a regular basis wake up and finally recognize that there is a problem. We as the clients and patients are not the enemy; instead we are partners and we deserve to be treated as valued and respected members of the healthcare team.
Nothing less is acceptable.
For far too long, HIV-positive patients have been viewed mainly as sources of data and research funding. Yes, as sources of money. Here’s a quote from an article about Michael Weinstein, head of the California -based AIDS Healthcare Foundation (A.H.F.), which I think sums this thought up best:
“The cost of the latest first-line H.I.V. treatment — a combination pill from Gilead called Genvoya — is about $34,000 per patient per year. When a patient uses an A.H.F. pharmacy, about $22,000 of that bill goes to Gilead, and $12,000 goes to A.H.F. The foundation’s pharmacies serve 50,000 patients in the United States, generating approximately $1 billion each year in revenue — about $200 million of it surplus. That money subsidizes A.H.F.’s expansion and advocacy as well as the group’s political activities.” New York Times Magazine, “The C.E.O of HIV”, April 26, 2017.
What this tells us is that people living with HIV are looked at as a source of revenue by our providers, by pharmaceutical companies, by pharmacies and by all of the agencies that they donate to. If those agencies and providers that are meant to serve us are unwilling or unable to listen and participate with the HIV-positive community in a positive and constructive manner then it is time that we as a community take steps to remove them as a roadblock to our care.
If that means we need to resurrect chapters of ACT-UP or similar groups then so be it. If we as patients need to be far more vocal with our politicians in demanding responsive care and responsive services from organizations we interface with, then that is what needs to happen. It is up to each and every one of us to take control of this process and demand change.
We are on the verge of amazing things in the treatment, prevention and eradication cycle of HIV. It is time for our community partners to step up as well and meet the challenges. Sadly the vast majority of them still are not.
T.J. Miller was diagnosed with HIV in early 1993, an event which he describes as one of the greatest gifts that life has ever given to him, because it forced him to re-evaluate his life and make positive, life affirming changes. Born in the Albany, N.Y. area, T.J. has been involved in health care since his late teens when he went to work with his local ambulance service. He then went on to become an instructor for the American Red Cross, twice being named instructor of the year by his students and peers. T.J. holds a bachelors degree in nursing from the SUNY Empire State College and a masters degree in nursing education from The Ohio State University and has worked in health care for over 30 years. Early on in the AIDS crisis, T.J. worked in 2 of the busiest dedicated inpatient AIDS Treatment Centers in N.Y. State, one of which covered a 25 county referral territory from the Canadian border with NY to just south of Kingston N.Y. He also worked at St. Vincent’s Hospital in NYC in their AIDS care inpatient unit. TJ has continued his work with AIDS services organizations all over the country while working as a travelling nurse providing staffing solutions and nursing education.
In his free time, T.J. loves to play piano/keyboards, is an avid cook, loves to remodel old homes, garden and enjoys travelling to new places. He currently lives in Columbus, Ohio.
T.J. can be found on Facebook at http://www.facebook.com/tj.miller.165