“A Regime’s Tight Grip on AIDS”– My Reaction to the NY Times Article on HIV in Cuba

I read the article about HIV in Cuba (www.nytimes.com/2012/05/08/health/a-regimes-tight-grip-lessons-from-cuba-in-aids-control.html) with great interest.  In the 1980s patients who had HIV in Cuba were put into quarantine.  Prison, only nicer.

I remember those early days of HIV. In the U.S. there was tremendous stigma associated with having AIDS.  At first the disease was a giant riddle, no one knew what caused it or where it came from.  And that sense of unknowing made people very afraid.  Could you get HIV from touching someone who had it? From breathing their air? From a hug or a toilet seat or a handshake or sitting on the same bus?

Even after the virus was identified and it was clear that there needed to be significant blood-to-blood or body fluid-to-blood contact in order for infection to take place, the fear and stigma surrounding patients with HIV remained.  And many patients still face it in their families or communities today.

In Cuba the quarantine situation petered out after several years.  Yet its work to protect its people from HIV has remained strong.  Cuba’s health care system provides free condoms to everyone, free and frequent HIV testing and thorough sex education to kids and young adults.  The sex workers in Cuba are very strongly encouraged and supported to use condoms in their work.  There is not very much HIV in Cuba these days (fewer than 15,000 cases) and relatively few new infections each year.

In the U.S. we have more than 50,000 new infections every year.  Condoms are not free (they are free in our clinic and in lots of health care facilities and HIV support programs) and sex education is not adequate.  We never put people in quarantine but the stigma and prejudice that exist in many parts of the country act as a virtual quarantine for some patients.

I wish our politicians had had the foresight and courage to recognize the danger and the cost of HIV in this country back in the 1980s.  We didn’t need quarantine but we needed and continue to need much more education. Not to mention availability of testing and treatment centers, free condoms (and the message to use them) and understanding that HIV can and should be prevented.  When not prevented, HIV can and should be treated.

 

What the Heck is Narrative Medicine?

Well, it’s an obvious question, I guess.  What is Narrative Medicine?  I’m asked this question fairly often when I say I have a masters degree in the topic.  And a one-line answer is that Narrative Medicine recognizes and values the importance of stories in the medical encounter.  How I explain it is to say that a patient comes to the doctor with his or her story of illness. This illness narrative is part of the larger story of that patient’s life, usually an unanticipated chapter or sometimes a direct consequence of some aspect of that life story.  In a similar way  as doctor or nurses or medicl students, we bring our own life story to that patient encounter.  We may not talk about it but it’s there.  That I am a woman, a mother, a sister, I like to ski, I grew up in the country, I speak french, these things will affect what I bring to the encounter.  And then there is the story of the patient getting care from the doctor, of Joe Schlebotnowitz seeing Dr. Ball for his pneumonia.  Narrative Medicine gives us tools and perspectives to understand that when we listen closely to those stories and reflect on them, when a patient feels that he or she is really being heard and when a doctor or other provider feels that the connection with the patient has truly been made, then there is better care.

One Pill a Day?

I recently upgraded my old cell phone to an iPhone.   My old phone could not send a text without me punching all of the various numbers buttons lots of times to get the correct letter to show up.  My texts tended to be very short.  As I learn to use my iPhone I am happy to discover new gadgets in it and I’m aware of how easily it has slipped into my pocket as a necessary, frequently referred-to item.  If you’d told me twenty years ago that I’d use my telephone to tell me in a human voice how far it is from where I’m standing to my home, or show me the traffic pattern in downtown Houston at 5 pm when I’m in New York, or that my phone could take my picture and send it to my sister in Florida, ( my iPhone can do a whole lot more than this, I know! ) well I don’t know if I would have believed you.

How far we have come from those early days of treating HIV with the “cocktail”.   In the late 1990s we routinely recommended patients take multiple different medications several times a day.  Every day.  Some pills had to be taken on an empty stomach, some with food, some every eight hours on the dot, some at bedtime only.  Initially we were glad to have these options for some of us knew a time even before that, when we’d barely been able to treat a few of the effects of the disease, never impacting HIV itself.  Still, it required a dedicated, determined patient once we did have effective therapy.  And now!  Now we have two options for one pill once a day as a full treatment regimen to treat HIV, with more options coming in the next couple of years.

The changes in these last twenty years are quite remarkable.  Yes, my iPhone is remarkable in that context.  But hundreds of thousands of people who suffer from HIV are alive today because of the changes in the medications.  My old cell phone and its short text messages were nothing when you think of it that way.

Why didn’t the patient return?

I saw a new patient today.  He came to the emergency room short of breath.  He told the doctors and nurses in the ER that he didn’t have HIV, or that he was unaware that he had it. A review of his chart showed a visit to a doctor at our medical center three years ago where an HIV test was done and came back positive. A note in the chart documents that he was contacted about this and told of the result.  A follow-up appointment was made. He didn’t come back.  Three years later he is in our emergency room short of breath. This is a bad sign.  Where has he been? What has he been doing? Why, when he started feeling short of breath and began losing weight over two months ago, why didn’t he come in then??

I ask him these questions and he has vague, evasive answers. One answer he gives is that he didn’t have insurance. I have a hard time understanding this as so many patients come through the emergency room who have no insurance and it doesn’t prevent them from seeking care.  I think there must be more to this story.

Patients and Social Media: Do We Google?

 In a session with a small group of medical students we talked about patient relationships and social media. We read a piece that appeared in the NY Times Magazine in 2010 in which a resident “friended” one of her patients on Facebook.  The patient invited her to his site to look at pictures from a trip he’d taken.  Seeing the photos, the resident saw the patient as a “hot” guy, and not just the desperately ill young man in the ICU.  But later, when he tried to communicate with her on the Facebook site, she didn’t answer him.  Was she right?  Was she wrong?  What kind of commitment did “friending” him entail?

One of the students said that her patient’s family told her that the older gentleman she was following was a well-known sculptor and she should google him to see his work.  She googled his name and saw that he was indeed, highly regarded and quite famous.  She felt it really helped her have a fuller picture of her patient.  She was glad to know him more completely by knowing something that was important to him and about him as a person, not just his medication list and his daily blood count.  The students then talked together about whether or not they’d spontaneously google a patient.  One student adamantly said that he wouldn’t.  Another said it’s public information and there would be nothing unethical or wrong about it.  A third student acknowledged the middle ground in this discussion and the various motivations that would lead one to look up a patient on the internet.  He noted that the doctor/patient relationship is private but the internet has rendered all of us public.

I grew up in a small town.  The doctor was a family friend; my father played golf with him on weekends.  There was no need to google anybody.  When I asked the students if they’d ever friended a patient on Facebook no one said yes.  A couple of students spoke of a rare time of giving a patient their phone number.  None had yet played golf with their patients.

All the words had been spoken, but somehow the feeling still wasn’t right (Jackson Browne)

Sometimes one of the hardest aspects of caring for patients with HIV is getting the patient to take their medication.

We spend a lot of time and effort in our clinic supporting the patients who need to be on medications.  The doctors, nurses, social workers, even the nutritionists all talk to the patients about this.  And why don’t patients take their meds? Why, one might ask, when you have an illness that is almost always fatal, why would you not take the medication to treat it? Medication which, when taken correctly, can lead one to live a normal life span – barring additional illness or trauma.  Well, the answers vary as widely as the patients giving them.  For some the pills are a reminder of HIV, of its stigma and shame.  For some it’s the hassle and intrusion of pills, for some it’s the side effects – real or perceived.  Some patients feel entirely well and taking pills seems unnecessary no matter what the doctors say. Occasionally a patient denies that HIV even exists and the drugs are just another scam by the government and the drug companies. Some patients are just too disorganized, others too caught up in work or family or drug use (or some combination thereof!). The reasons are sometimes unknown. More than a few patients tell me they never miss a dose but when I tell them their blood tests reveal a different story they might say that yes, they were off the meds briefly when the blood was drawn but now they are taking their medications perfectly.  Or they might continue to say that they never miss a dose and cannot understand why the blood tests aren’t better.  We try to talk to them. The nurses will spend time reviewing the disease process and the importance of taking the meds. But when the visit is over the patient walks out the door.  It can be frustrating trying to help and knowing what is potentially in store.