A young AIDS patient: What love is

Dr. Betsy MacGregor’s story:

     We admitted a great number of children who were sick with AIDS to my hospital back in those days, and sadly we lost many of them.  I remember one two-year-old boy in particular.  He touched me deeply.  As was typical, he had acquired the virus from his infected mother when he was born, and despite our best efforts to help him, he was slowly slipping away from us.  He lay quietly in his crib, hollow-eyed and emaciated, never smiling or even crying.  He simply did not have the energy.

     The little boy’s mother had brought him to our emergency room one night, burning up with fever.  The chest x-ray we took showed he had pneumonia, and so we promptly admitted him to the pediatric ward.  His mother lingered at his side for a time, but then departed and never returned.  Eventually we learned she had been admitted to another hospital shortly after leaving ours and had died there from complications of her own AIDS.  The one thing she had left her son was his name. She had called him Angel.

     Angel had been on our pediatric ward for three months.  There was no other place that wanted him, and frankly we were happy to keep him with us.  At least we knew he would be fed and kept clean and sheltered and would occasionally be held in another human being’s arms when one of the staff was able to spare a moment or two.  We knew he had little time left.

     One night, when I was on call and kept busy on the ward into the wee hours of the night, I glimpsed a side of Angel’s story I had not been aware of before.  The lights had all been turned down and most of the children put to sleep in their beds, and I was going about my intern’s work – reviewing orders, checking on patients’ vital signs, and peeking in on the sickest ones – when something caught my ear.  A faint lyrical sound was whispering down one of the dimly lit hallways.  Listening closely I detected the thin notes of a melody carried by a human voice. 

     I was tired and still had chores to do, but the wistful sound called to me, and so I followed it, curious to learn what its source was.  It led me to Angel’s room.  Yet what I saw through the doorway as I approached made me pause and remain in the quiet shadows of the hallway rather than enter.  For it was clear that more was taking place in Angel’s room than the sad wasting of an unfulfilled life.  Something more intimate was happening, something that needed not to be disturbed.

     With Angel was his father.  I had never seen the man before, but during discussions on our daily morning rounds, I had heard that he often came in the wee hours of the night to visit his son.  He was a tough-looking person, unshaven and stamped with the harsh signs of inner city life and his own battle with the AIDS he had acquired during years of drug addiction.  I wondered what factors in his life prevented him from visiting in the light of day as other parents did.  Perhaps he was fully occupied with trying to survive, I thought, or maybe he just preferred the lonely hours of the night, when he was less likely to encounter the accusing stares of strangers’ eyes.

     The man was sitting in a chair, holding Angel on his lap and feeding him infant formula with a dropper.  As I watched, he waited carefully for his son’s lips to accept each drop before offering him another, all the while gazing into his child’s eyes and softly crooning a melody – a hauntingly soothing sound, the notes filled with reassurance and encouragement.  Angel’s eyes remained fastened in turn on his father’s face, as if he were drinking in life-giving nourishment from the look that he saw there.

     The two of them were in such a rapt communion that I remained bound in unmoving silence outside their door.  It seemed that I had been summoned not to enter, but to stand as an observer of this exquisite scene, witness to an act of meaning that lay beyond my mind’s measuring.

     What I had been called to witness, my heart said, was the love that was shining brightly in that little room.  Nothing more than that, and nothing less.  In the light of that love, the tragedy of Angel’s pitiful life – of both their lives – was being lifted up and set aside.  I could feel the truth of that as surely as anything my medical books had ever taught me. 

     The shadows in the hallway seemed to whisper, Do you see?  This is what love is.  It is a force more powerful than even life-destroying disease.  It can tenderly embrace whatever the world has abandoned as hopeless and transform it into something to be cherished.


Read a story about the power of love from a group.  Thanks to Dr. Betsy MacGregor for permission to reprint this excerpt from her book, In Awe of Being Human: A doctor’s stories from the edge of life and death. 

25th anniversary of ACT UP: A tribe in desperate trouble

This month marks 25 years since the the start-up in 1987 of ACT Up (AIDS Coalition to Unleash Power), the coalition of gay activists that transformed health care for AIDS. The changes they won in funding to fight AIDS, in the ways medical research is performed, etc., marked an historic event in consumerism: the first major victory won by the grassroots efforts of citizens at risk of a particular disease.

My gay college friend Don may be alive because the gay community acted up since then to safeguard themselves, and to speed the development of anti-retroviral drugs that kept many of his friends healthy.

I hope we in the patient advocate community can one day be equally successful in promoting safer care. As Frank Bruni wrote in the NY Times on March 17: "a tribe in desperate trouble...elected self-reliance over self-pity, tapping its own reserves of intellect, ingenuity and grit to make sure its members were cared for."

I was a good patient: Patient-doctor relationship

Nurse Practitioner Richard Ferris' story:

I am so damn tired of this...I am not my f----ing T cell count or viral load level and I wish to hell people would stop treating me like I am. It is degrading, and worse yet, it puts up roadblocks to communication between friends, medical providers, and the rest of the damn world.

I have been practicing AIDS medicine since the beginning of the epidemic. Today is very different and as a clinician I am a much happier man because of the advances in HIV therapy, but we have become a community that is still fixated on clinical numbers and not the person sitting in front of us and this had got to stop.

I recently felt compelled to change my AIDS doc because all I was a bunch of numbers to her. I was the "good" patient." She knew I took care of myself, was sober, worked out, and was nearly perfect with sticking to my meds. So I got the "greet them, treat them and, street them" kind of medical care all clinicians fall into now and then on a regular basis. So after numerous attempts of talking with her about my care concerns and not seeing things change I said the short version of the Serenity Prayer, which is "F--- it!", and found another provider who is wonderful. She treats me like a real person. I am a real person! She asks what is going on in my life and my numbers, while still important, are not the heart and soul of every visit.

I have had several other medical conditions overlooked because of my being a "good patient" that I had to handle myself. But I am lucky because I am an AIDS certified Nurse Practitioner and knew how to get the help I needed. What about the average person with HIV/AIDS without that sort of background? What happens to them? I assume they fall through the clinical cracks and suffer.

Maybe that is the lesson here: NEVER BE A GOOD PATIENT!

Read another story about an HIV patient who’s very aware of the relationship with his doctor.

Thanks to Richard for his post, at Richard’s POZ blog.

Medication becomes like diamonds: An access & patient compliance story

"Carlos," a slight, soft-spoken man who makes a living ferrying tourists around Boca Chica in the Dominican Republic, arrived at the doctor’s office in 2000, near death. He had tested HIV-positive a few years before, but had been unable to afford the 30,000 pesos, or $1,000 a month, for medicine on the black market. The doctor started him on an older, cheaper drug combination, and then Carlos’ brother-in-law in the Bronx began buying medication from a "non-control" drug dealer (of prescription, non-controlled substances). Now, Carlos supplements his $300 monthly income by reselling pills he doesn’t need for about $80 a bottle.

"Medication becomes like money," says his doctor, "like diamonds for somebody, because they see their life in there. And it is in there."

Advice for patients like Carlos: If your doctor says you need the pills, take them.

Read a related black market access story, or Kai Wright’s source story in the May/June issue of Mother Jones.

Psst, Got antriretrovirals?: A wrong patient & compliance error story

For years, "Jerry" bounced in and of various jails for burglary, theft and armed robbery. He tested HIV-positive 10 years ago, apparently from having shared an HIV user’s needle. Later, while while nodding off on heroin, he stumbled in a subway platform, and lost most of his front teeth. Still, he has a wide, boyish smile.

He would use his New York State Medicaid card to buy prescriptions worth hundreds of dollars, then turn around and sell them on the street for as little as $20. "You’d take it, out of desperation," he says.

These days, he’s clean, and not desperate for cash, so he’s unloading his painkillers and the Marinol his doctor prescribes to help his appetite. When he finally finds the "non-control man”"who buys prescription ("non-controlled" substance) drugs, Jerry nets $80. The non-control man can sell them for huge profits.

Advice to HIV patients: Only ask for the meds you need. For the others, don’t ask, don’t sell.

Advice for Medicaid program managers: Look into possible fraud by tracking the prescription patterns of habitual criminals who are HIV-positive.

Read a story about access to treatment by a poor family, or Kai Wright’s source article in the May/June issue of Mother Jones.