More in the Newspaper

My patient was on the cover of The New York Times recently. It was a Thursday morning and I was scheduled to see D, a patient coming to the Center for Special Studies after testing positive for HIV in the emergency room underweara few days prior. Getting HIV-positive patients into care is a very important first step in treating their disease. Our HIV clinic has an arrangement with the ER to schedule a new-patient visit for those whose rapid HIV test results indicates the presence of infection.

While all patients should be offered HIV testing in the emergency room, patients may decline the test. The ER is much more likely to recommend and even urge testing when the providers there know they can refer patients to us if the results are positive. I’d seen D’s name on my schedule for Thursday and I read from the chart that D was a gay Hispanic man in his early twenties who had been seen in the ER for a cut on his leg and had agreed to be tested for HIV. And now he was scheduled to see me. That morning The Times ran a front page article entitled, “Poor Black and Hispanic Men are the Face of HIV.” I didn’t know if D was rich or poor but I could guess that he was one of the people the article was describing.

D was born just about the same year that I started working as an HIV specialist. Those were very dark times; our patients were very sick, many died, many were isolated from friends and family for being positive, for being gay, for being gay and positive. Odd how those two words – gay meaning carefree and happy, and positive meaning, well, optimistic, upbeat – could apply to someone desperately ill and lonely.

But that was a long time ago. D never knew those days. Today we have effective, well-tolerated medication and we can control the virus.  People who get into care early can expect nearly a normal lifespan. On his first visit D sat in front of me and admitted that he didn’t really know much about HIV but he thought some of his friends might also have the infection.  D didn’t seem upset or sad at his diagnosis. He didn’t wonder where he got his infection, or from whom. I’m going to start him on some medication soon but first I asked him to start taking a vitamin every day. Taking medication consistently is the most significant aspect of successful HIV treatment. I am hoping D can handle taking a vitamin every single day and get used to the habit so that when I give him a prescription for antiretroviral therapy he’ll be in the swing of things and won’t miss any doses.

D and I don’t talk about his being on the cover of The New York Times.  In that article I learned that 80% of gay men under the age of 25 with a new HIV infection are black or Hispanic.  D says he has had a partner for the last year and that they both tested HIV negative one year ago. At first they used condoms but stopped months ago. D says they do not have sex with other partners. I wonder about the veracity of this last statement but the important thing is that D is here now. And I remind him that he needs to use condoms with each sexual encounter.

The Times’ article talked about the challenges faced by young gay men of color coming out to their families and the difficulties encountered when young people are not accepted for who they are. This contributes to the risk of unsafe sexual behavior in compromised settings and to the continued spread of HIV among this population, particularly as many infections are transmitted from older men who are positive but either not in care or not adhering to their antiretroviral therapy. Young gay men of color are a vulnerable population, but it’s unlikely that they see themselves that way. Young men do not often think of themselves as vulnerable.  I’m hopeful that D will stay in my care and take his vitamins and then take his HIV medications when they are prescribed. It’s a first step after being on the front page of The New York Times.

A Cure That Asks More Questions

I was in college and we sat in a lounge somewhere on campus after closing our books for the night. Jon told us his mother had called earlier in the day. In a southern drawl he related her words: “Jon, you’re an uncle.”

pregnantHe accepted our congratulations with a smile but confessed that he hadn’t known his sister was even pregnant and to our mixed disbelief and surprise told us that his sister hadn’t known either.  He added that she was quite overweight and had presumed a little more weight gain and some flutterings in her abdomen were due to indiscretion, nothing more.

I thought of this the other day when I read about the possible cure of an HIV-positive baby.  While the case raises more questions than it answers in terms of HIV – should every HIV-positive newborn receive triple drug therapy? Is this infant really cured? Was in utero versus intrapartum transmission a factor in the infant’s infection and if so is it a factor in the child’s response to treatment? Were the drugs used particularly effective for an infection in a neonate? The questions go on.  But what struck me about this case was the information that the woman presented to have her baby not knowing that she was HIV-positive and not having received any prenatal care.  How does it happen in our country that a woman gets pregnant, carries a pregnancy to term and delivers the child without receiving any prenatal care?

In fact, the CDC reported in 2010 that over 47,000 of the 4 million births in the United States were to women who had received no prenatal care.

There are several reasons but none of them feel right.  The woman may not have had access to care; she may live far from any obstetrical clinic or she may not have the financial resources, insurance or benefits to obtain that care.  She may be in denial about the pregnancy.  She may be cognitively challenged or not realize what is happening to her or if she realizes, she may lack the knowledge or understanding of how to deal with it.  It’s possible that she’s obese and like Jon’s sister she might be oblivious to the bodily changes that occur in pregnancy because her weight so distorts her self-image.  Lack of prenatal care correlates with lower socio-economic status and poor education in the mother.  And as such doesn’t bode well for the child born of that mother.  Mothers and their babies who receive no prenatal care are at risk for any number of short and long term complications, including death.  It seems wrong and sad that a baby should be born without its mother receiving care for her pregnancy.

For this one baby, however, regardless of its mother’s circumstances, the fact that her HIV was undiagnosed means that the child’s HIV was not prevented – with standard medications offered at the time of delivery and post-partum.  So in this case the child was started on medication for treatment, not prevention.  And while it is disturbing to think of any woman in the United States going without prenatal care, this one child may lead us to a significant finding in the treatment of HIV.

Snowflakes and Starfish

In a snowstorm each snowflake that falls is said to be unique.

There was a study done in 2006 (Walenksy, JID) in which the authors demonstrated in bar graphs the months of life saved by effective anti-retroviral medication when compared with the gains by drugs against several other chronic, life-threatening conditions such as relapsed lymphoma and coronary artery disease after a heart attack.  The per-person survival gains for HIV drugs were 160 months, that is, over ten years, compared with 90 months for lymphoma and 50 months for heart disease.  Ultimately, the article concluded that in the ten years since the arrival of therapy, more than 3 million years of life had been saved.  By now perhaps that snowy nightnumber has doubled.

For nearly ten years my clinic supported a small HIV-treatment program in Nigeria, north of Lagos.  We named it the Starfish program after a story about a man walking on a beach littered with thousands of starfish.  On the beach was a boy picking up starfish and one by one throwing them back into the sea.  The man approached the boy and asked what he was doing, that given the number of starfish on the beach, his efforts wouldn’t make any difference. The boy kept on bending over and picking up starfish and throwing them into the water.  “It makes a difference to this one,” he said as he threw.

I teach an elective Narrative Medicine class to first year medical students.  One of the students is writing about her experiences in an orphanage for sick babies in China.  The name of the orphanage is Starfish.  The student wrote the same story about the boy on the beach as the origin of the name of the orphanage.

For lives to be saved, for years of life to be gained, we need to continue to get patients into care.  Patients and doctors need to be aware of risk and amenable to testing.  Testing needs to be available, straightforward and inexpensive.  And once a diagnosis is made, care needs to be accessible, affordable and multidisciplinary.




You, Who Are on the Road

I went to see Crosby Stills and Nash the other night. I have always been a big fan. I bought the Déjà vu record when it first came out and it was the first record album I ever bought.  The first of many, many records that I bought over the years (an enormous pile of which I still have on a shelf in a closet). I must have listened to that record ten thousand times. Maybe more.

The concert was great.  Stephen Stills is an awesome guitar player and while he might struggle a little with pitch, he was inspiring to watch up there on the stage.  Graham Nash was barefoot and with his big shock of white hair and blousy dark shirt he looked a bit ethereal as he swooped around.  I thought David Crosby’s voice was terrific.  He has quite a presence with his flowing crown and that big mustache of his.  He  has an understated, self-deprecating humor that I loved.

I noticed that everyone, or almost everyone in the audience was old.  There were a couple of teenagers there with their parents but so many of the people were wrinkled, or grey, or both. At one point, at the end of a song I saw this guy holding up his fists in the air and shaking them in exultation with the crowd. He was kind of scrawny and had some wispy grey hairs poking out of his head. The guy looked like he could have been eighty years old!

Then, on a restroom break, I looked in the mirror.  I’m not eighty but it’s sure a long time since I first bought that Déjà vu album.

When that record came out we had never heard of HIV.  It’s possible that a case or two existed in the United States, but we were still about a decade away from the catastrophe of AIDS.  CSN (and Y at the time) sang about Woodstock (yes, I know it was a Joni Mitchell song) and long hair and not trusting the government.  They were singing those same songs the other night.  Now they are not only great songs but they are infused with a kind of nostalgia for who I was and how I felt at that earlier time.

What’s amazing is that any of those three guys singing up on the stage, or any number of the grey, wrinkled, happy crowd around me could be HIV-positive.  We’ve come so far in how we can treat and manage HIV that patients can live long and healthy lives if they get into care and take their medicine.  Fifty used to be considered old for a patient with HIV.  That is completely no longer the case. Last week in one of my clinic sessions every single patient on my list was over the age of fifty.  In a couple of years over half of all the patients with HIV in this country will be over fifty.  One of my patients will be eighty next month.  He could have been standing there shaking his fists above his head in bliss as CSN sang that fabulous finale to Suite: Judy Blue Eyes.


My Patient Joe

I have a patient, I’ll call him Joe.  Joe loves to drink beer. He loves beer more than anything, it seems.  He doesn’t think of beer as alcohol.  When we ask him, “Joe, are you drinking lately?” He says no. Then there’s sometimes a pause.  “I drink beer,” he says. “That’s all.” But the problem for Joe is that he drinks beer and he doesn’t take his medication to treat his HIV. I’ve known Joe for about six years now and every so often, for a few months, he takes his medication beautifully. When he does, his HIV viral load goes down and his T cells rise. Not long ago he even had an undetectable viral load. It didn’t last. When I saw him the other day he said he’d been off his medication for over two months.  He said it was because he’d moved and that had knocked him off his schedule. But he told me he moved two weeks ago, not two months ago. He wanted me to give him new prescriptions.  He claimed he was going to go that same day to the pharmacy in his new neighborhood and he was going to fill the prescriptions and start taking his medication again.

Joe used to come into the office smiling and he kept up a banter of talk of how great a doctor I am and what a great clinic we have and how I might not be happy with him but he’s going to do better because he wants me to be happy and I take the best care of him and it’s because of me that he’s still alive.  He was always very pleasant and mild and while he sometimes blatantly lied about taking his meds (we could see very well from the labs that he wasn’t) he would usually fess up about his drinking.  He’d always say that he was thinking about quitting but maybe would do it next year or for Christmas or for his birthday. The one time his viral load was undetectable he was ecstatic and told me he felt great and all his labs would be just as good going forward.

The other day, though, Joe seemed more sad. His excuses were flimsy and his overall appearance was ragged. He had a rash on his face that comes out when his viral load is high.  He said he hadn’t been drinking.  Just beer.  He came to his appointment with a woman who is a case manager for a community-based organization that reaches out to patients and helps them get to their appointments and reminds them to take their medication.  Joe has come with different case managers over the years.  This woman, like the others before her, seemed to know Joe fairly well, and to like him.  She told him she’d call him the next day to remind him to take his pills.  “I know you will,” he said, looking at her.  Our nurses will call Joe next week to check on him.  The case manager will call him every few days.  Sometimes Joe doesn’t answer the phone.  It’s been a hot summer.  The beer is cold.

Heart Disease and HIV

A recent article in the New York Times highlighted the increased risk of heart disease in patients with HIV. (  I’m always glad to see articles about HIV in the newspaper.  It’s important for the public to be informed and up-to-date on issues that relate to this epidemic.  I was surprised, however,  that the article presented the link between HIV and heart disease as a new phenomenon, or something that HIV doctors and cardiologists have not been aware of.  There has, on the contrary, been tremendous interest, research and discussion of this topic going back to the late 1990s, when it became apparent that some patients were seeing marked increases in their cholesterol and triglyceride levels while taking the new protease inhibitors.  Further research has looked into the role of inflammation in coronary artery disease and the contribution of heightened immune function to this condition.  

We know from studies involving thousands of patients that there are a number of HIV-related factors that directly or indirectly contribute to increased risk of heart disease in those infected with HIV.  All of this research has concluded that there is an incremental increase in risk of heart disease just from being HIV positive.  This incremental risk can be added to the risk attributed to higher lipid levels in those taking protease inhibitors, higher rates of diabetes linked to older protease inhibitors, higher rates of smoking among patients with HIV and increased inflammatory markers in untreated patients.  The increment from HIV alone is very small next to the well-known, previously established risks.  Male sex, age over 42, smoking, family history, hypertension and diabetes are all significantly more important as risk factors for heart disease.  Smoking is a particularly bad problem in HIV patients; nearly half of all patients with HIV are smokers (as opposed to less than 30% of the general population).  So the link between HIV and heart disease is not a development.  It’s good to be aware of it but keep those major risk factors in mind if you hear of an HIV patient having a heart attack.

What About Sex?

My patient wants to know if he can have sex with his HIV-negative partner without a condom. My patient has an undetectable viral load on his medication. His T cell count is normal.

What should I tell him?

The risk of transmitting virus is very low. But would anyone say it’s nonexistent? I don’t think so. In Switzerland not long ago there was an article that supported unprotected sex in monogamous HIV-positive couples who have undetectable viral loads. We are perhaps more conservative than the Swiss? That seems like an odd notion!

I continue to advocate for safer sex practices with all my patients, even those who have undetectable viral loads.  It may be overly conservative at this point and I usually acknowledge as much when I’m speaking to patients.  But for now I feel it is the best advice to try to keep my patients safe.

Unfortunately the monogamy issue can be a very big elephant in this room.  On more than one occasion I’ve had a patient acknowledge that they or their partner has had sexual encounters outside of their primary relationship.  Patients have come in with new infections with syphilis, chlamydia and gonorrhea.  Even with a condom Herpes can be transmitted from skin against skin.  For partners who are serodiscordant (one with HIV and one without) the risks of not-monogamy combined with not using a condom can be life-altering.  For couples who are both HIV positive there is the risk of transmission of resistant virus; even when that risk is very, very small.



Should We Treat Recent Seroconverters Early?


First we had “Hit early, hit hard.”  Most people attribute this statement to David Ho, who wrote an editorial in the New England Journal of Medicine in 1995 entitled, “Time to hit HIV, early and hard.” (NEJM 1995; 333:450-1.)  Dr. Ho recognized that even in asymptomatic patients there was tremendous viral activity and T cell turnover and that treatment could reduce virus.   Dr. Ho reasoned that early treatment would support the body’s immune system, through the preservation of T cells.  With the protease inhibitors we finally had effective therapy and we recommended treatment to nearly all our patients, even those with good T cell counts.

After six years of “Hit early, hit hard,” the recommendations for when to start an HIV-positive individual on antiretroviral therapy (ART) shifted toward waiting until the T cells were lower.  The reasoning was that patients with stable T cell counts above 200 were not at particular risk for opportunistic infections.  Further, the medications were onerous to take and were associated with side effects and long-term toxicities such as risk of body fat redistribution, diabetes or cardiovascular disease.   

In the last five years clinicians have been shifting back toward treating patients with higher T cell counts.  Several large studies have supported this and current guidelines recommend treatment being offered to all HIV-positive patients with T cell counts less than 500.  Some clinicians recommend treating any HIV-positive patient no matter what the T cell count is.  In addition, the medications are much better tolerated these days, and the toxicity issues are not as prevalent with the newer ART regimens.  You could say that we’ve really come full circle in this discussion, back to “Hit early, hit hard.”

Patients who have recently seroconverted, that is, those who have recently become HIV positive, offer an interesting subset of patients.  At the immediate time of seroconversion the amount of virus circulating in the blood is very high.  This level falls over the next weeks to months and eventually settles at what is known as the “viral set point.”  This level corresponds to a period of clinical latency for most patients and can last for several, sometimes many, years.  The factors determining the viral set point and the length of time of clinical latency have not yet been fully discovered.  It would be great to know why one person’s disease progresses much more rapidly than another’s and the answer is based on both the individual’s immune function and on viral factors, but there is a lot we still do not understand.  Similarly, it’s been wondered if these recent seroconverters should be treated earlier or if treatment should be held, given the possibility of years of latency without the need for medications.

A recent study (The Setpoint Study, JID 2012:205 (January 1)) looked at two groups of recent seroconverters.  One group received immediate treatment (within six months of serconversion) and one group did not.  After 36 weeks of treatment the medication in the first group was stopped and both groups were followed for another 36 weeks.  After 72 weeks 50% of the group who hadn’t received early treatment had T cells at a level requiring ART whereas in the immediate treatment group only 10% of the group met the requirements for starting ART.  It seems the immediate treatment group had slowed down the disease progression. Because we don’t typically stop therapy in a patient who has started ART it’s not entirely clear how to translate these results into clinical practice.  It does, however, further reinforce David Ho’s motto.  Treating earlier, with effective therapy, can benefit the immune system.


PrEP for HIV


I have been thinking a lot about PrEP.  It sounds so great when you first think of it.  A simple, one-a-day pill to prevent HIV infection.  Straightforward and easy.  The obvious parallel is oral birth control pills.  One pill every day and no pregnancy.  Isn’t PrEp the same thing?  Sort of?  So why have I been thinking about it?

Pre-exposure prophylaxis (PrEP) involves getting anti-viral medication into your system before the HIV gets there so that if you are exposed to the virus the medication will prevent the virus from replicating and thus reduce the likelihood of infection from the exposure.

Several studies tried to demonstrate that this idea even works.  Two large studies in women in Africa were stopped early because of futility.  Of the nearly 7000 women studied, those on the prophylaxis agent didn’t have lower rates of infection than those not on the drug.  But when they looked back at the actual drug levels in the women who were supposed to be taking the prophylaxis they found very low to negligible levels.  The women weren’t taking the medication.  That must have been so frustrating for the people running the study!  But it did reinforce the lessons from oral birth control medications: if you miss more than two days, all bets are off.

Two other studies, one in heterosexual discordant couples (one spouse HIV + and one HIV -) and one in men who have sex with men (MSM), did show significant differences between the groups taking PrEP and those not taking PrEP.   Adherence was better in these groups, evidenced by higher drug levels.  These study subjects perhaps had more motivation, more direct confrontation with potential risk in their partners.

So it seems that the question -does it work?- has been answered.  If you take PrEP you can reduce your risk of infection from HIV.  That is, of course, important to know.  But this leads to many new questions.  I wonder who should take PrEP – should it be any sexually active person between the age of 15 and 24?  That’s the group where we are seeing the most new infections these days.  Should it be all sex workers?   Should it be anyone in a serodiscordant relationship?  Anyone who has anonymous sex?  Anyone who has sex?  Anyone who thinks they might have sex?  Anyone who thinks?  It’s not simple.

Another line of questions has to do with the drug used in all of these studies, tenofovir.  It’s a drug that we use very commonly for HIV treatment and we rely on it.  Does using it for prophylaxis take it away from someone somewhere who needs it for treatment?  Does it risk creating virus that’s resistant to that drug?  And this drug can cause kidney problems in some people.  We watch for this in our HIV patients on medications.  How closely should this be monitored in people who take the drug for PrEP?

Who is going to pay for PrEP?  Will our healthcare system?  Will insurance?  Will the church?   These days the answer might be “none of the above.”

Will taking PrEP give someone a sense of security that leads to more risky behavior such as more anonymous sex or skippping other, important forms of protection such as condoms?

There are lots of other questions raised by the concept of PrEP.  Not all will have clear answers.  I keep thinking about it.

“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 ( 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.