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.

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.

 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.

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.