Doc: Lyme Underreporting ‘No Surprise’ But Big Problem

It was big news this week when the CDC announced that cases of Lyme disease were vastly underreported and that, in fact, about 300,000 Americans are diagnosed with the disease each year — 10 times its previous estimate. Lyme disease now has this distinction according to the public health authorities: It’s the most commonly reported tick-borne illness in the United States.

In the latest NEJM Journal Watch’s HIV and ID Observations blog post, Dr. Paul Sax, clinical director of the HIV Program and Division of Infectious Diseases at Brigham and Women’s Hospital and professor of medicine at Harvard Medical School, writes that he’s not at all surprised by the Lyme disease underreporting and offers a few theories on what’s behind it:

Go ahead, check my math — that’s a whopping 10:1 ratio of actual to reported patients with Lyme, highlighting that this reporting is something we clinicians just don’t do very well.

And it’s no surprise to me at all.

Here’s why:

–Clinicians are busy doing other stuff, most importantly taking care of their patients.
Lyme is one of many reportable diseases — take a look at this list!
–It’s annoying. If you asked 100 doctors and nurses what they like least about practicing medicine, 74.39% would say “the paperwork.”
–The forms can’t be completed quickly, as they request detailed information about dates of exposure and onset of illness, presence of diverse associated symptoms, and evaluations for ancillary diseases. Plus, they’re paper forms — a particular problem in an increasingly web-based and electronic medical record world. As for the specific dates of possible exposure and onset of symptoms? “I just lie,” one PCP told me.
–“Soft calls” won’t get reported at all. Think about the febrile, achy patient in the summer who’s just spent a weekend hiking in the woods, saying ticks were everywhere, then gets treated (appropriately) for suspected Lyme. That may be the billing code the clinician uses, but often as not, no Lyme test is sent.
–No one’s paying for these reports. Forgive the mercenary tone to the comment, but as these folks will tell you, humans are very predictable creatures — give them some incentive to do something, and they’ll often do it, even if the task is unpleasant.

Sax suggests that those seeking a fix for the underreporting problem might benefit from looking at the history of HIV, Continue reading

Advocates: End Of AIDS In Mass. Within Reach

Frank, a 21-year-old homeless man, takes in Cambridge Commons. (Photo: Martha Bebinger/WBUR)

Frank, a 21-year-old homeless man, on his favorite Cambridge Commons bench. (Martha Bebinger/WBUR)

Could Massachusetts stop — not just reduce but actually stop — the spread of HIV and new cases of AIDS?

Some activists say that with a little more money and a targeted plan, the end of AIDS is within reach here.

“It’s possible for us to end the AIDS epidemic in Massachusetts,” said Rebecca Haag, president and CEO of the AIDS Action Committee of Massachusetts. “This came on our watch and I believe we should put an end to it.”

You may be shaking your head and asking, “Really?”

Well, Haag says, think about this figure: 657. That’s the total number of new HIV cases reported to the state Department of Public Health in 2011. Compare that with the many hundreds of Massachusetts residents who were dying of AIDS every year from the mid-1980s through the mid-1990s.

In 1994, the worst year, 1,156 died. Overall, nearly 13,000 Massachusetts residents died of the disease, and more than 18,000 are now living with it.

But recent years have seen major progress.

“In Massachusetts, we have been successful in dramatically reducing new incidence of HIV infection and are approaching levels that start to look like an unsustainable epidemic, over the long term,” said Kevin Cranston, who directs the Bureau of Infectious Disease at the Department of Public Health.

When might there be so few new cases that HIV dies out? Cranston says it’s hard to predict, in part because Massachusetts is down to the hardest-to-reach cases. Most of them are young gay men in poor city neighborhoods.

Like Frank. When his dad found out he was gay, he was kicked out of the house. Frank, who’s 21, turned to prostitution. Continue reading

How An AIDS Specialist Read Recent News Of A ‘Breakthrough’

HIV particles, yellow, infect an immune cell, blue. (NIAID_Flickr)

HIV particles, yellow, infect an immune cell, blue. (NIAID_Flickr)

By Paul E. Sax, MD
Guest contributor

There it is, right in your daily paper, on your tablet or computer screen, or wherever you get your news today — a headline about a great medical breakthrough everyone’s been waiting for:

Scientists On Brink Of HIV Cure
Researchers believe that there will be a breakthrough in finding a cure for HIV ‘within months’

Yes, I read this exact headline recently. Here’s the full article, published in the English newspaper the Daily Telegraph. It details how some Danish researchers have figured out a way for “the HIV virus to be stripped from human DNA and destroyed permanently by the immune system.”

Dr. Paul Sax (Courtesy BWH)

Dr. Paul Sax (Courtesy BWH)

Furthermore, they are “expecting results that will show that finding a mass-distributable and affordable cure to HIV is possible.”

By all means, go ahead and read the full piece; you’ve got 20 free reads on the Telegraph website. As a treat, there’s a colorful stock photo too, showing red blood cells floating through some blood vessels, along with a few HIV virions glowing bright green — it’s very Fantastic Voyage-esque, minus Raquel Welch in her scuba gear.

But return here for a moment, please. I’m going to recommend three simple steps to getting the most from this — and other medical breakthroughs — in the mainstream media.

Step 1: Be a skeptic. As exciting as curing HIV would be, and no matter how much you’d like this to happen, just think for a moment about the plausibility of this story. Are scientists really on the “brink” of curing HIV? If so, why is this only appearing in the U.K. Telegraph? Trust me, this brink-of-cure has not yet appeared in peer-reviewed medical journals or at scientific meetings.

And wouldn’t you expect this kind of advance, if real, to show up everywhere in media land? Fire up that Google machine, and see what you can find about it elsewhere — lo, it’s the great following herd, all stampeding after that same U.K. Telegraph story. And importantly, here’s a New York Times piece on the very same general subject — HIV cure — and they don’t even mention these Danish researchers. Sure, the Times misses some stories, but it’s got some pretty impressive Health and Science sections — could they miss this, researchers on the brink of curing HIV, no less? I think not. So perhaps Mr. U.K. Telegraph Science Reporter is exaggerating a bit, for the sake of his story, of course.

Step 2: Don’t be a complete snob — give the story a chance. Continue reading

What Does A Possibly Cured Baby Mean For Adult HIV?

HIV particles, yellow, infect an immune cell, blue. (NIAID_Flickr)

HIV particles, yellow, infect an immune cell, blue. (NIAID_Flickr)

It broke Sunday, the big news that a baby with HIV had apparently been cured by intensive anti-retroviral therapy immediately after birth. NPR’s Richard Knox did a bang-up job on the story here, including our local angle, contributions by pediatric AIDS researcher Dr. Katherine Luzuriaga of the University of Massachusetts.

But given that pediatric HIV and AIDS are — thankfully — rare, in American babies at least, the news seemed to beg the question: So what implications does this have for adults? I put it to Dr. Daniel Kuritzkes, chief of infectious diseases at Brigham and Women’s Hospital. He’s currently at the Atlanta conference where the baby’s case was presented. His response, lightly edited:

I think the implication for adults are not certain, because the difference with children is that we know exactly when they may have been exposed, and have an opportunity to test them immediately after birth or very shortly after birth. Whereas the typical adult may be exposed to HIV and not know it, and come in later when they start having symptoms. So the opportunities to intervene very, very early are much harder to produce in adults.

‘We continue to see evidence that it is possible to eradicate HIV from infected patients — maybe still in very unique and unusual circumstances, but the more of these cases we see, the more impetus it provides for ongoing research.’

Strikingly, there was a presentation just before [the baby’s case] by a Thai investigator working with the US military research program, where they were doing pooled HIV testing of people coming in to testing centers in Thailand, and had the opportunity to identify some people very early on, and show that those who did get on treatment very early on subsequently had either undetectable or very, very low levels of HIV. That suggests that if you could get to people early enough, you might in fact prevent the establishment of the reservoir. [NPR’s Knox explains that viral reservoirs are “hideouts for the virus within the immune cells.”]

Those patients all remain on antiretroviral therapy, so they’re not claiming that the patients are cured, but the timing here is really critical. Between the first group, who are really within the first week or so of infection, and the next group, who were a few days beyond, there was a big difference in what happened with the reservoir. Continue reading

Pulling Back The Curtain On The AAP’s New Pro-Circumcision Stance

For some excellent context and more backstory on the American Academy of Pediatrics’ new recommendations on circumcision, listen to Radio Boston today featuring the very knowledgeable Marvin Wang, co-director of the newborn nurseries at MassGeneral Hospital for Children. (As for his credentials, when asked how many circumcisions he’s done, Dr. Wang said he stopped counting after the first thousand.)

The AAP on Monday updated its 1999 circumcision policy statement (which said the data weren’t sufficient to recommend routine neonatal circumcision) and now asserts that the health benefits of newborn male circumcision outweigh the risks and insurers should cover the procedure. However, the influential pediatrician’s group stopped short of recommending universal circumcision for all baby boys and said the ultimate decision should be left to parents.

Wang says that much of the push for the new AAP recommendations came from clinical studies in sub-Saharan Africa that showed male circumcision reduces the risk of heterosexually acquired HIV infection in men by approximately 60%. Wang also put circumcision in a global context, noting that while the rate of hospital circumcision in the U.S. has dropped from about 79 percent two decades ago to about 55 percent today, in the U.K only about 9 percent of men are circumcised. Continue reading

Influential AAP Says Health Benefits Of Circumcision Trump Risk


The American Academy of Pediatrics new policy statement today asserting that the health benefits of male circumcision outweigh the risks will inevitably set off a firestorm of reaction. Even while the pediatrics group continued to reiterate in their paper that circumcision is a personal family decision best left up to “parents in consultation with their child’s doctor” folks who oppose the procedure and equate it with genital mutilation will certainly not be pleased.

Carey’s earlier post on the increased health costs associated with declining circumcision rates triggered scary and intense online outrage.

All I can say is I’m glad I have daughters.

Here’s the abstract from the AAP paper today:

Male circumcision is a common procedure, generally performed during the newborn period in the United States. In 2007, the American Academy of Pediatrics (AAP) formed a multidisciplinary task force of AAP members and other stakeholders to evaluate the recent evidence on male circumcision and update the Academy’s 1999 recommendations in this area. Evaluation of current evidence indicates that the health benefits of newborn male circumcision outweigh the risks and that the procedure’s benefits justify access to this procedure for families who choose it. Specific benefits identified included prevention of urinary tract infections, penile cancer, and transmission of some sexually transmitted infections, including HIV. Continue reading

As Of Today In Mass., You Can Just Say Yes To The HIV Test

Dr. Paul Sax (Courtesy of BWH)

As of today in Massachusetts, you can get an HIV test without having to sign a written consent form. That means you can also skip that potentially embarrassing walk down to the lab to hand over your consent paperwork. You can just say yes.

Massachusetts is a leader in HIV care and research, but it is the last — yes, the very last — state to switch from written to verbal consent for HIV tests, said Dr. Paul Sax, clinical director of the Infectious Disease Department at Brigham and Women’s Hospital.

In other states that switched to verbal consent, experience has borne out the rationale for making HIV testing easier, he said: More people get tested, so more people know their HIV status, and those who find out they’re positive can get treatment and avoid spreading the virus to others.

How will the new Massachusetts law play out in the clinic? Dr. Sax says that typically, a medical staffer recommends an HIV test to a patient — “For example, you could say, ‘The CDC recommends everyone in the US get at least one HIV test, so I recommend you get one.'” Then the clinician should ask if the patient has any questions about accuracy or other implications of the test. If the patient says yes to the test, that should be noted in the medical record.

(Speaking of the CDC, how cool is this little tool? They have the public-health equivalent of a storefinder: You type in your zipcode and it gives you the addresses of clinics where you can get tested for HIV and other sexually transmitted diseases in your area. It’s here.)

Why is Massachusetts so late on this when we’re normally out front on public health? Dr. Sax theorizes that the existing law also included privacy protections that no one wanted to lose. Testing and privacy were “very entangled, and it was very hard to change one without changing the other.” All previous privacy protections have in fact been preserved.

In Reviewing The Year, Good News On Possible AIDS ‘Tipping Point’

People walk inside an 82-foot condom during an AIDS awareness event marking the World AIDS Day in Budapest, Hungary .

Somebody stop me before I do another year-end round-up. But just a brief note about what I found myself saying yesterday as part of Radio Boston’s year-in-health review: The decision by the journal “Science” to call an HIV-drug study its “Breakthrough of the Year” brought greater attention to some very encouraging news about AIDS.

‘A tipping point in the fight against AIDS, 30 years after the epidemic first surfaced.’

Today’s story by NPR’s Dick Knox — on the study and the questions it raises about ramping up the fight against AIDS — is here.

And here are the basics from the New York Daily News:

The lead story of the year was an international trial, coined HPTN 052, which showed that people taking anti-retroviral drugs reduced the risk of heterosexual transmission to partners by 96 percent.
The breakthrough was described by some experts as a tipping point in the fight against AIDS, 30 years after the epidemic first surfaced.
“People were interested in the idea of treatment as prevention, but it created a hurricane-force wind behind the strategy,” said lead investigator Myron Cohen of the University of North Carolina’s School of Medicine.

And from bio-ethicist Art Caplan on

When the study on the benefits of antiretroviral therapy ran last August in the New England Journal of Medicine, it did not really get the attention it deserved. Continue reading

100% Prevention And A Cure For HIV/AIDS: On The Horizon?

Dr. Fauci speaking recently at Holy Cross

As promised in my previous post, here’s more from Dr. Anthony Fauci, a leading expert on HIV/AIDS and director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health. I asked him for a summary of new findings and advances in preventing the spread of HIV/AIDS and finding a cure for those infected.

Since my interview with Dr. Fauci, another new finding was announced. As reported by the Globe, an international team of researchers has cracked the genetic code of the “controllers,” a mystifying group of individuals infected with HIV who are virtually free of symptoms and the need for medication. The researchers discovered five amino acids that distinguish controllers from their HIV counterparts facing less fortunate fates.

An excerpt from the Globe:

“HIV is slowly revealing its secrets,’’ said Dr. Bruce Walker, one of the leaders of the international consortium and director of the Ragon Institute, an AIDS-vaccine research center affiliated with Massachusetts General Hospital, Harvard University, and MIT.

“We’ve now been able to go from a haystack down to a needle and see that this is really the key place where we need to focus our effort,’’ he said.

Have there been any breakthroughs or developments in HIV/AIDS research?

Dr. Anthony Fauci: The first is in the arena of vaccine. We have been trying for over 20 years to develop a safe and effective vaccine, with nothing but unfortunate and discouraging failures. But a year and a half ago, in a trial that the NIH and the Department of Defense sponsored in Thailand among 16,000 people, it was the first indication of a modest, positive effect of preventing acquisition of HIV infection. It is not good enough to be ready for primetime by any means, but it’s the first positive step to prove the concept that a vaccine is at least feasible.

Also, this past year we’ve had some very encouraging results of studies that were conducted in South Africa using a topical microbicide — a vaginal gel which is inserted before and after intercourse — that prevented infection in, again, a modest number of individuals, about 39 percent compared to placebo. It was strongly related to whether or not the individuals actually used the gel. But this is again another important proof of concept. We have to improve upon the results, but at least it’s proved that this approach to prevention can work. So in the areas of microbicides and vaccine, [it’s] not quite yet where we want to be, but certainly going in the right direction.

Another important area that is being pursued is what’s called pre-exposure prophylaxis: mainly getting people who are at high risk and practicing high risk behavior – for example, discordant couples, commercial sex workers, injection drug users and others — and giving them a drug, every day, an anti-viral drug that is known to be safe, to prevent them from getting infected. The results of that study should be forthcoming in the next month or so.

What are the timelines for the development of such prevention methods and vaccines?
Continue reading

HIV/AIDS In The U.S. 'Worse Than Most Perceive'

More than 1 million people live with it in the U.S., and one in five don’t know they have it. While the annual numbers of new HIV infections have remained stable, more than 56,000 Americans are newly infected with the virus each year, according to the Centers for Disease Control.

In a recent survey, more than 60 percent of Americans said advancements in HIV/AIDS have received too little coverage. I spoke with an infectious disease doctor and expert to find out where we stand in combating HIV/AIDS. Dr. Anthony Fauci is the director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health.

What is the state of HIV/AIDS in the U.S. today?

Dr. Anthony Fauci: The state of HIV/AIDS in the United States is clearly worse than I believe most people perceive, because we’ve reached somewhat of a plateau — but at an unacceptable level — and there has been a degree of complacency about that.

I believe the perception of HIV/AIDS in the general population, is [that people don’t] perceive it as serious a situation as it is. The people who are involved with it every day, like I and my colleagues are, we see that right up front, just looking us square in the face. But for the ordinary person who has so many other things on their mind, they’re really not thinking about this as a big problem in the United States, when in fact it still is.

What is being done in terms of funding and outreach for HIV/AIDS?

There’s always a need for robust funding for HIV/AIDS research, but there have been enough major advances, particularly in the arena of therapy, where we really need to implement the things that we have done, as much as, or more than, getting new things.

This is really a low-tech public health/sociological issue, where you’ve got to get into the population, particularly people at risk, and you need to seek them out in a voluntary way, get them tested and get them into care. Continue reading