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.”

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. This is the other side of that same coin. Sure, it’s been a challenge curing HIV, but we’ve got that Berlin patient (now living in Las Vegas, by the way) — he’s cured. And the baby from Mississippi, he/she is cured (sort of). Plus, a whole army of smart HIV researchers actively tackling the problem as we speak. In fact, this very same approach cited by the Danish researchers — stimulating the HIV reservoir with an HDAC inhibitor — is a leading candidate for a viable cure strategy; it’s being looked at by many groups. Hey, why can’t Good Ol’ Ole Søgaard and his team be the first to succeed? The extra funding provided by the Danish government — 12 million Danish kroner! — is further evidence of the soundness of Professor Søgaard’s approach.

Step 3: After all that, land someplace between Steps 1 and 2. Take a deep breath. Read the full piece.

Discard the fluff: Brink of cure; 12 million Danish kroner; expect a cure to be available in months; you can distribute it to millions; it’s affordable, too.

Focus on the facts: Some Danish researchers have some funding to investigate a potentially promising HIV cure strategy; they are testing it in a small number of people; some European scientists may soon be collaborating; we have no actual results yet to report.

After these three steps, all these medical breakthroughs — on HIV, cancer, Alzheimer’s, weight loss, male-pattern baldness, you-name-it — make a lot more sense.

Even if they are less exciting. Enjoy the movie.

Paul E. Sax, MD is the editor-in-chief of Journal Watch HIV/AIDS Clinical Care, clinical director of the Division of Infectious Diseases at Brigham and Women’s Hospital, and a professor at Harvard Medical School. This post also appears on his Journal Watch blog, HIV and ID Observations, which is a dialogue on HIV/AIDS, infectious diseases, all matters medical, and some not so medical.

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?

Contrast this with HIV/AIDS: We had to develop clinics and tests, largely develop new drugs. What we’re talking about here is applying the same lessons in terms of human resources. Let’s hire some health workers, give them living wages, train them, make it an attractive job as we did with HIV. Let’s apply the lessons learned with HIV about how to get drugs to remote places. Let’s use social marketing. It can be done. Let’s apply the lesson that it comes down to management more than anything: human resources, supply chains, monitoring. All of these things are what we did in HIV and we could do the same thing for a fraction of the cost.

How many lives could be saved?

The goal is 95% reduction of pneumonia deaths, 70% of diarrheal deaths, so we’re talking about saving 1.6 million kids a year. It’s an enormous impact.

For how much?

With all the full bells and whistles, $6.7 billion is what we estimated. To cut mortality in half we’d need $3.8 billion. Right now we spend about $14 billion on AIDS in Africa. Right now we don’t even have a line item on pediatric pneumonia and diarrhea, it’s within newborn health, which has a combined budget for $1.3 billion. So what we’re talking about is hundreds of millions of dollars when what we need is a tenfold increase in funds, but still, that is a quarter of what we spend on HIV/AIDS. I’m a passionate supporter of the HIV/AIDS campaign and we’ve done a stellar job and should celebrate that. The problem is not that we’ve spend too much on HIV/AIDS, the problem is that we haven’t spent enough on pediatric diarrhea and pneumonia.

But has HIV/AIDS taken away from attention to these pediatric killers?

It has absorbed people’s attention to an extraordinary degree. I don’t know if you can draw a straight line between the two, but indirectly…It has been perceived, rightfully, as the #1 public health emergency of our time, and that has given it the first place in line in every queue. But that is not sustainable anymore when we actually try to think about what we’re trying to achieve: To maximize health for the maximum number of people.

This problem is big but we can no longer pretend that this problem is insoluble, because we’ve definitely shown that where there’s a will, there’s a way.

The full Lancet series is here. Highlights from the press release:

Pneumonia and diarrhoea account for over a quarter (28.5%) of all deaths in children worldwide, and were responsible for around two million child deaths in 2011, according to new estimates in the first Series paper. Diarrhoea caused around 700 000 deaths in children under five, and pneumonia 1.3 million deaths in the same age group. Over two thirds (72%) of deaths from diarrhoea and over four fifths (81%) of pneumonia deaths are in children under two years old.

The researchers found that sub-Saharan Africa and south-east Asia experienced the highest burden of these diseases, with nearly three quarters (74%) of deaths from diarrhoea and pneumonia occurring in just fifteen countries. Although mortality rates from the diseases are falling in most areas, some countries are still experiencing a growing number of deaths each year, including Afghanistan, Burkina Faso, Democratic Republic of Congo, Cameroon, Chad, and Mali.

According to Professor Robert Black of Johns Hopkins University, USA, “While diarrhoea and pneumonia have very different symptoms and causes, several risk factors for the two diseases are the same, including under-nutrition, sub-optimal breastfeeding, and zinc deficiency, meaning that they can be effectively prevented and treated as part of a coordinated programme.” Mass vaccination campaigns will need to play an important role, and the authors estimate that nearly a third of episodes of severe diarrhoea could be prevented by widespread vaccinations against rotavirus and cholera, with up to two thirds of pneumonia deaths thought to be vaccine preventable.

Series 2: Modest further investment could eliminate diarrhoea deaths in just over a decade

The second Series paper evaluates the evidence for possible preventive and therapeutic interventions against childhood diarrhoea and pneumonia, and identifies 15 key interventions – including vaccinations, zinc supplementation, and breastfeeding promotion – which have the potential to save millions of children’s lives. The authors estimate that if these interventions continue to be implemented at current levels in 75 Countdown countries, around half of all child deaths due to diarrhoea and pneumonia could be prevented by 2025, at a cost of US$3.8bn.

However, if these interventions were scaled up to 80% coverage or more, deaths from diarrhoea could be effectively eliminated (95% prevented), and around two thirds (67%) of deaths from pneumonia prevented by 2025, at a total cost of US$6•7bn – less than a quarter of the estimated cost of the 2012 London Olympics .

Series 3: Diarrhoea and pneumonia remain low on list of worldwide priorities, despite huge global impact

…Scarcely half of children with severe acute pneumonia receive antibiotics, while only a third of children with acute diarrhoea receive oral rehydration salts, and fewer than 1% receive zinc supplements. The authors suggest that one reason why many of the barriers identified remain, despite being relatively easily solvable problems, is that recent child survival investments in low-income and middle-income countries have favoured technically sophisticated, expensive solutions targeting specific pathogens or diagnostic challenges, at the expense of broader-based investments in health care systems. According to the authors, “The solutions to reducing childhood pneumonia and diarrhoea deaths are well within our capacity…[but] the pathway…depends on how we prioritise child survival and the investments we choose to make.”

Series 4: Ending all child deaths from pneumonia and diarrhoea by 2035 is achievable

In the final Series paper, Drs Mickey Chopra of UNICEF and Elizabeth Mason of the World Health Organization, representing the Series authors, propose a “bold goal” of ending all preventable child deaths from pneumonia and diarrhoea by 2035. The authors say that this goal is achievable, but will depend on increased international awareness of the scale of the problem, strengthening leadership, and co-ordinated international action and investment.

Further reading on BU Today: Keeping Two Million Children From Dying Each Year

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?”

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.

I was immediately impressed. The Mayor knew a lot about public health. But what really sold me was his passionate vision. He made it clear that he cared deeply about the health of the city’s residents, particularly those who were poor, frail, or vulnerable. He wanted someone to head the city’s health department who was going to shake things up, get in front of the issues, and work in partnership with him to promote good health. He said he wouldn’t be afraid to take on difficult issues. I left the meeting thinking I wanted to work for him in any position that was available.

Within a month of taking the job of Executive Director of the Boston Public Health Commission, I found out that he wasn’t kidding in anything he’d told me. He wanted to announce a proposal to require all restaurants in the city to either go smoke-free or to have designated smoke-free sections. This may not seem controversial now, but in 1998 this was front-page news, and the Mayor met a lot of angry resistance. When we held a hearing on the proposed regulation, hundreds of opponents turned out. Many called this idea un-American.

The Mayor didn’t care. He knew it was the right thing to do. Reflecting both his political acumen and his wry humor, the Mayor decided to hold a press conference to affirm his support in Doyle’s in Jamaica Plain, the restaurant and bar where everybody goes — including people who wouldn’t much like the idea. I wasn’t sure what we were in for. But I should have known better. Typically, the Mayor had spoken with the owners of Doyle’s and secured their support.

He somehow made this pretty revolutionary idea seem like the natural thing to do, consistent with our history and traditions. The regulations passed and were implemented without resistance. Within a few years, he was leading the charge again — proposing that all workplaces within the city, even bars and clubs, go smoke-free. Boston’s current relatively low smoking rates are a tribute to his leadership .

It didn’t take long for me to realize that the Mayor really cared, cared deeply, about certain principles — and you wouldn’t be able to work for him very long unless you did, too. One of those principles was that everyone in the city needed to be treated with fairness and dignity. If the Mayor felt that certain neighborhoods or individuals were being discriminated against because of, say, poverty or racism – watch out.

For example, when he learned of the much higher rates of infant mortality among Black and Latino residents of the city, he wanted a campaign to address it. This led to a number of programs, including home visits to new mothers by nurses and educators, and school-based educational classes on health for teenagers.

But the Mayor was not content with isolated efforts. He wanted a full-scale mobilization of the city against racial and ethnic disparities in health. He established a blue-ribbon committee with participation from virtually all of the city’s hospitals. He held press conferences to announce the latest statistical finds of inequity. He prioritized funding for the city’s community health centers and agencies of color to increase outreach and accessibility of services. He later hired the brilliant and tireless Barbara Ferrer to lead the Boston Public Health Commission, not only because she is brilliant and tireless but because he knew her proven track record in spearheading efforts to combat inequalities in health, and her unique expertise at working with the city’s children and young adults.

It was pretty edgy for a big city mayor to be giving speeches about combating racial and ethnic inequities in health. Just as it had been pretty edgy to take public and risky stands on needle exchange and cigarette bans. You just don’t see that very often—that leadership, that courage, that principle. Year after year, issue after issue, the Mayor really did get in front of the issues—and led not just the city but the state and, as President Obama noted yesterday, the country too. Even if they didn’t understand or support every one of the issues he raised at the beginning, the people of Boston understood that the Mayor was taking the issues on out of principle, not for political gain. For them, not for himself. And because the people of Boston always knew, he got more done in 20 years than most leaders could get done in a lifetime.

John Auerbach is a Professor of Practice in Health Sciences and the Director of the Institute on Urban Health Research at Northeastern University. From 2007 to 2012 he was the Massachusetts’s Commissioner of Public Health.

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.

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.

Babies are most commonly infected with HIV during birth as they transit the birth canal. A small number of kids get infected because the virus actually passes through the placenta. And unfortunately, what happens in resource-limited settings is that kids not initially infected may be infected post-natally from breast milk.

In this kid, because the virus was initially detected at 30 hours after birth, it argues that probably infection had to have occurred before birth, or you wouldn’t have had detectable virus at birth. But exactly when it happened before birth is debatable, because virus levels weren’t that high. Yet if it had been one or two months earlier, it seems highly unlikely the prompt initiation of antiretroviral therapy would have had this result.

There are some unique features about the timing here that are very hard to tease apart. So there’s still a possibility that this wasn’t actually a full-blown infection. There’s no question there was virus in the baby and treatment prevented the baby from becoming fully infected. And no question the baby is now clear of HIV. But there are some unusual features to the transmission of the virus.

So, I asked, what would you hope the public takeaway would be from this news? 

First of all, from the perspective of the health of HIV-infected mothers and their children, it’s really important that women be tested and, if they’re infected, they get on to antiretroviral therapy, because we can effectively prevent the transmission. There were 150 cases of HIV infection in infants in the last year the CDC reported, which is still 150 too many but it’s a remarkable accomplishment.

Second, 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 toward an HIV cure that would be more broadly applicable. So I think it provides a strong sense of optimism to those of in the field who are working on it….

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 MSNBC.com:

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. However, researchers convincingly showed that people who take antiretrovirals  — medicine that weakens the HIV virus — not only benefit from treatment but are far less likely to sexually infect their non-HIV positive wife or partner…

So, at last, after taking a terrible toll on us for decades, we now know how to get the HIV virus on the run. Get anti-retroviral medications to all 7.6 million people who need them, continue aggressive efforts to promote the use of condoms and the avoidance of risky sexual and injection drug behavior, give out clean needles to addicts and we can have our revenge on the virus that causes AIDS.

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.

Just last week, leadership of the Global Fund to Fight AIDS, TB, and Malaria (GFATM) — the most effective and transparent global health funding mechanism in the world to date — announced that they are canceling the next round of grant applications. The reason: major donors haven’t kept their financial promises to the poor.

The letter goes on to explain that Congress will vote this month on the 2012 contribution to the Global Fund, as well as the President’s Emergency Plan for AIDS Relief (PEPFAR). PIH is asking friends and supporters to urge Congress to allocate at least $6 billion for HIV/AIDS and PEPFAR with $1 billion for the Global Fund in this year’s State & Foreign Operations Appropriations Bill. (For more details, and a sample letter to Congress drafted by PIH, click here.)

Partners In Health co-founder, Dr. Paul Farmer, who will speak today on this topic at the Harvard School of Public Health World AIDS Day symposium, detailed the urgency of funding these programs in an op-ed last month in The Washington Post. “Ten million people — many of them young and most of them poor — will die around the world this year from diseases for which safe, effective and affordable treatments exist,” Farmer writes. “In Haiti, these are known as “stupid deaths.” What’s more, inadequate health services predominate precisely where the burden of disease is heaviest, keeping a billion souls from leading full lives in good health.”

At the same time, the AP is reporting that President Obama will announce new steps to combat AIDS. The story says:

Senior Obama administration officials said Obama will set a goal of getting antiretroviral drugs to 2 million more people around the world by the end of 2013. In addition, the U.S. will aim to get the drugs to 1.5 million HIV-positive pregnant women to prevent them from passing the virus to their children.

The new global goals build on the work of the President’s Emergency Plan for AIDS Relief, which focuses on prevention, treatment and support programs in 15 countries hard-hit by the AIDS epidemic, 12 of them in Africa. Bush launched the $15 billion plan in 2003, and in 2008, Congress tripled the budget to $48 billion over five years.

Despite Obama’s more ambitious goals, the plan’s budget is not expected to increase.

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.

And more from the release:

“We demand that Merck join in negotiations with the Pool by January 2012, produce licenses for its patented AIDS drugs, efavirenz and raltegravir, that allow generic distribution in all middle and low-income countries, and guarantee that the resulting licenses will not place restrictions on the procurement of Active Pharmaceutical Ingredients (API),” explained Alyssa Yamamoto, from Harvard College.

The Pool is a two-year-old organization established for pharmaceutical companies and other R&D organizations to voluntarily share their patented AIDS drugs, offering lower prices in poor countries. According to UNAID, last year only 35% of people needing HIV therapy had access to treatment. In the past year, the U.S. National Institutes of Health and the pharmaceutical company Gilead have licensed patents to the Medicines Patent Pool. Unlike its peers in Big Pharma, including Boehringer-Ingelheim, Bristol-Myers Squibb, F. Hoffman-La Roche, and Viiv Healthcare, Merck refuses to enter negotiations.

That gives you the background to understand the photo below, in which a protester playing the role of Merck is refusing to join others in the pool. From the release: “Friday’s Pool Party is part of an ongoing campaign for the MPP across the U.S. and U.K., and the activists plan on heading to Merck’s New Jersey headquarters next.” Alyssa, a Harvard senior, says the group has been in correspondence with Merck, but received no response specifically about the pool party.

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.

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.

Website FierceHealthcare reports here:

OCR opened its investigation of Mass General after a complaint was filed by a patient whose PHI was lost on March 9, 2009. OCR’s investigation indicated that Mass General failed to implement reasonable, appropriate safeguards to protect the privacy of PHI when removed from Mass General’s premises and impermissibly disclosed PHI potentially violating provisions of the HIPAA Privacy Rule.

The breach of privacy is the subject of a lawsuit on behalf of at least 20 of the patients whose records were lost, according to attorneys John Yasi and Robert F. Mazow of Salem.

Mass. General sent over this statement:


Regarding Settlement Agreement with 
US Dept. of Health and Human Services

Massachusetts General Hospital and the Massachusetts General Physicians Organization have entered into a settlement agreement with the U.S. Department of Health and Human Services (HHS) Office for Civil Rights related to the loss, in March 2009, of MGH patient encounter billing forms and schedules containing protected health information (PHI) on a Red Line subway train. Under the agreement with HHS, MGH has agreed to implement a corrective action plan during the next three years to enhance protection of PHI when it is physically removed from MGH premises for work purposes. In addition, we agreed to pay $1 million to HHS as part of the settlement.

MGH will be issuing new or revised policies and procedures with respect to (1) physical removal and transport of PHI from MGH premises; (2) laptop encryption; and (3) USB drive encryption. After these policies and procedures are issued, we will be providing mandatory training on them. All members of our workforce must participate in the training and certify that they have completed it.
We look forward to taking these steps to further our continuing efforts to protect the privacy and security of our patients’ health information.

This World AIDS Day, Twitter, Facebook and other social media sites will be especially quiet. Celebrities like Usher, Lady Gaga, Ryan Seacrest and at least a dozen others have pledged to remain digitally silent until $1 million is raised to provide support to children and families affected by AIDS.

Money raised for the Buy A Life campaign will go to the Keep A Child Alive foundation, co-founded by singer Alicia Keys and long-time AIDS advocate Leigh Blake. Aside from providing food and medical support, KCA also operates 10 orphanages in different parts of Africa and India for children whose parents have died of AIDS.

While the reason for the cause is literally life threatening, the campaign itself raises some questions. This particular campaign, for instance, comes complete with celebrities resting peacefully in coffins and “last video” testaments – oh, and you can buy a cute t-shirt, too.

Not surprisingly, what’s being dubbed the ‘digital life sacrifice’ is considered to be social media at its best -– or worst (depending on whom you ask).

It’s clear that social media has changed the game in charity fundraising, but are we exploiting the very causes we’re raising money for? Or is it OK to take the Malcolm X approach and raise money and awareness By Any Means Necessary? What’s your take?

Related Coverage:

• World AIDS Day In Pictures
• HIV/AIDS In The U.S. ‘Worse Than Most Perceive’
• 100% Prevention And A Cure For HIV/AIDS: On The Horizon?