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

Lancet: How To Save A Couple Of Million Small Children’s Lives A Year

(Wikimedia Commons)

(Wikimedia Commons)

We’ve made so much progress on AIDS in Africa; now it’s time to tackle the world’s biggest child-killers, pneumonia and diarrhea.

That’s the logic driving a new series of papers just out in the medical journal The Lancet. Here’s the summary, and from the press release:

Leading causes of death in children under 5 could be eliminated in 20 years

Diarrhea and pneumonia – regarded as relatively minor illnesses for most people living in high-income countries – are together the leading causes of death for children worldwide. In 2011, they were responsible for two million deaths of children under five, despite the fact that they can be treated and prevented at relatively low cost.

A new Lancet Series on childhood diarrhoea and pneumonia, from a consortium of academics and public health professionals led by Professor Zulfiqar Bhutta of Aga Khan University in Pakistan, provides the evidence for integrated global action on childhood diarrhoea and pneumonia, including which interventions can effectively treat and prevent them, and the financial cost of ending preventable deaths from childhood diarrhoea and pneumonia by 2025.

Dr. Christopher Gill of Boston University’s Center for Global Health & Development, who co-authored one of the Lancet papers, offers this (lightly edited) context for the series:

Roll back ten years. Around 2000, there was a big, passionate debate about what we should do about AIDS in Africa. The activists were saying, ‘This is a public health emergency, we’ve got to move. We can do this.’ And the skeptics and pessimists were saying, ‘This is too complicated and expensive.’ The activists won this debate, and today we can look back and say that we have made unprecedented progress on AIDS in Africa. Millions of people are in treatment, there are new drug supply chains and clinics, and the infrastructure is all built de novo. It’s spectacular.

So I look at that and say, ‘Okay, pediatric diarrhea and pneumonia kills 2 million kids a year, way more than HIV/AIDS does by many fold. The cure for pneumonia, amoxycillin, is widely available and costs nearly nothing to manufacture. For diarrhea, you need oral rehydration salts, sugar and water and zinc. Again, costs almost nothing and is wildly effective. We could cut mortality in half with interventions we’ve had available for literally decades, and we don’t do it. Why? It’s not too complicated. We’ve shown with HIV/AIDS you can take a problem that’s highly complicated and solve it in the most difficult situations possible. We have no plausible excuses why we don’t do this with diarrhea and pneumonia. We don’t need new technologies or vaccines or antibiotics to solve this. We can do it with what we have. If we’re not doing it, it’s simply because we’ve made a political decision not to, and I think that’s tragic.

So what needs to be done? Continue reading

Commentary: Mayor Menino, Out-Front Leader On Public Health

By John Auerbach
Guest Contributor

In the early 1990’s, at the height of the AIDS epidemic, there was a shortage of courage among many political leaders. That was why I was surprised when I heard that a little-known city councilor from Hyde Park was taking a public stance that needle exchange should be considered as a way to slow the spread of HIV. Needle exchange was (and still is in many circles) too controversial for most elected officials to support, in spite of the substantial body of evidence that it was effective. When I heard he was from Hyde Park, not a neighborhood that had felt the full impact of the epidemic, I wondered, “Who is this guy?”

John Auerbach

John Auerbach

That guy, it turned out, was Tom Menino. And in classic Menino style, he wasn’t taking the position he took because it was politically popular to do so. It wasn’t. He was taking the position because he thought it was the right thing to do.

It was several more years before I actually met him. I heard he was looking for someone to head up the newly created Boston Public Health Commission. I wasn’t interested in the job. I thought that the task was too overwhelming – pulling together 50 or more relatively small programs into a single department at a time when resources were limited and most of the attention was focused on supporting the success of the nascent Boston Medical Center. But I remembered the story of his courage in the AIDS epidemic, and I wanted to thank him. 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

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

Advocates Pressure Congress To Fund Global AIDS Programs

Pressure is rising on the U.S. to continue funding for global AIDS treatment

“Save Millions More Lives.”

That’s the subject line in a letter being sent to more than 184,000 supporters later today from the global health nonprofit Partners In Health.

The letter begins this way:

We’ve never done this before.

We’ve never asked you to contact your Members of Congress, but the situation is dire. Today is World AIDS Day and the poor we serve need your help.

PIH, along with other international health organizations and donors, has made enormous gains against HIV/AIDS over the past decade. These gains led to 6.6 million people receiving HIV/AIDS treatment. But today we’re at significant risk of seeing our progress stall or even stop. Continue reading

‘Occupy,’ Longwood-Style: AIDS Drugs Protest Outside Merck

'Occupy Merck' protesters Friday in Longwood

I’d planned to run over to the Longwood Medical Area on Friday to cover the “Occupy Merck” protest  — a small but creative “pool party” demonstration in the chill autumn air, aimed at pressuring the major pharmaceutical company into making its patented AIDS drugs more accessible to poorer countries.

Health reporters have had little call to cover the myriad “Occupy” groups springing up around the country, and this would have been my first chance to get in on the action. But I couldn’t make it — despite the “Occupy” in its name, the group staged only a brief protest — so am playing catch-up from its press release, and there’s more background in the Harvard Crimson:

A Patent Pool Party: Activists Make a Splash Outside Merck’s Pharmaceutical Labs
Groups warn that Merck’s refusal to join other companies in negotiating with the Medicines Patent Pool will jeopardize access to lifesaving AIDS treatment.

(Boston, MA, Friday, 21 October, 1:30pm) Over 50 students from Harvard University, Boston University, and the Massachusetts Institute of Technology, people living with AIDS, and allies from Boston community groups held a “Pool Party” demonstration at Merck’s laboratories, adjacent to Harvard Medical School. The protesters donned bathing suits, sounding the call for Merck to enter negotiations with the Medicines Patent Pool.

Continue reading

Elizabeth Taylor’s Courage On AIDS

Today’s announcement that Elizabeth Taylor had died prompted WBUR’s David Boeri to recall the courageous, prominent role she played in changing the public’s attitudes toward people with AIDS back in the 1980s, when the disease was new and widespread fear led many to shun patients. David witnessed her AIDS work firsthand as a television reporter in Seattle and Boston. He writes:

I remember going out to cover my first stories on the AIDS epidemic. It was the early eighties, the CDC had just named a new disease and I was still trying to memorize “Acquired Immunodeficiency Syndrome.” When we went to meet my first “victim,” the camera man didn’t want to get out of the car. Another camera man wanted to shoot the interview from the street. Lots of people didn’t want to cover the stories; we had fights over who was going to be assigned to them.

It’s striking now to remember how people didn’t want to get close to those whose symptoms we couldn’t see. I remember some of my camera men wouldn’t shake hands with patients I was interviewing. Others wore gloves. Even contact with family, friends or gay lovers of those with symptoms frightened people. There was so much fear and so little established information, and therefore so much ignorance.

Elizabeth Taylor embraced the sick and abandoned when few others would. Physically as well as politically. The entertainment world had made her a princess and then a goddess, but what she did in the early eighties was extraordinary. In the way of Hollywood overkill, she’d be dubbed “The Joan of Arc of AIDS,” but what she did was real. She was the first one in the entertainment industry to reach out, the first one, as well, to speak out about the harsh discrimination that labeled AIDS the “gay man’s cancer.”

You may recall that she had some rather influential friends, like the former actor who was president of the United States at the time. She weighed in heavily. She shamed the industry that turned its back on its own, like her friend Rock Hudson. And then, complaining that no one was doing anything to raise money, she did. She raised millions — for the AIDS Research Foundation and the AIDS Medical Foundation and the Elizabeth Taylor HIV/AIDS Foundation. And she kept on going.

I came to know her in a small way in the mid-eighties, when she was battling with her own demons of addiction. She was grand, all right, and she hypnotized crowds with her eyes and manner, but she had the dedication of a bedside nurse. And for those years in the early eighties, she had more clout than the surgeon general.

MGH Settles For $1M After HIV Patient Records Lost On Subway

The Red Line near Massachusetts General Hospital

Hat-tip to investigative reporter Tom Mashberg, who’s working on this story, for pointing this out:

The federal Department of Health and Human Services reports here that Massachusetts General Hospital has agreed to pay $1 million to settle claims that it violated patient privacy rules. The department’s dry summary:

“The incident giving rise to the agreement involved the loss of protected health information (PHI) of 192 patients of Mass General’s Infectious Disease Associates outpatient practice, including patients with HIV/AIDS.”

To which must be added: Those records were lost on the Red Line, and never recovered. The account in the settlement posted here offers some painful details:

(1) On March 6, 2009, an MOH employee removed from the MGH premises documents containing protected health information (“PHI”). The MGH employee removed the PHI from the MGH premises for the purpose of working on the documents from home. The documents consisted of billing encounter forms containing the name, date of birth, medical record number, health insurer and policy number, diagnosis and name of provider of66 patients and the practice’s daily office schedules for three days containing the names and medical record numbers of 192 patients.
(2) On March 9, 2009, while commuting to work on the subway, the MGH employee removed the documents contalning PHI from her bag and placed them on the seat beside her. The documents were not in an envelope and were bound with a rubber band. Upon exiting the train, the \1GH employee left the documents on the subway train and they were never recovered. These documents contained the PHI of 192 individuals.

The $1 million settlement agreement specifies that it does not constitute an admission of guilt by Mass. General. The hospital does agree to put in an extensive “corrective action plan” to improve privacy protections. Continue reading