Vaccine advocacy 101

I recently finished a 2-year stint as an American Society for Microbiology Distinguished Lecturer. It’s an excellent program–ASM pays all travel expenses for lecturers, who speak at ASM Branch meetings throughout the country. I was able to attend Branch meetings from California and Washington in the West, to Massachusetts in the east, and south as far as El Paso, Texas, with many in-between. Each Lecturer selects several topics to speak on, and the Branch chooses from those which they want to hear. Mine included basic research (zoonotic disease, antibiotic resistance) as well as science outreach and advocacy topics (zombies, vaccines).

My talk on vaccines covered vaccine hesitancy and denial, the concerns some parents have regarding vaccination, and the way social media and celebrities contributed to the spread of vaccine misinformation. Inevitably, someone would ask in the Q&A or speak to me afterward inquiring, “But what can I do? I don’t feel I know enough about why people reject vaccines, and feel helpless to combat the fears and misinformation that is out there.” These were audiences of microbiologists and other types of infectious disease specialists–people who are very likely to be educated about vaccines and vaccine-preventable diseases, but who may not have followed the saga of disgraced former physician Andrew Wakefield, or aren’t familiar with the claims of the current anti-vaccine documentary, Vaxxed, or other common anti-vaccine talking points.

To help fill this gap, I recently published a paper in Open Forum Infectious Diseases,” Vaccine Rejection and Hesitancy: a Review and Call to Action.” As the title suggests, in it I give a brief overview of some of the figures in the anti-vax movement and the arguments they commonly use. I don’t go into rebuttals directly within the paper, but the supplemental information includes a subset of both anti-vax literature as well as several published rebuttals to them that interested individuals can look up.

I also briefly review the literature on vaccine hesitancy. Who fears or rejects vaccines, why do they do so, and how might we reach them to change their minds? This is really an area where many individuals, even if they’re educated about vaccines and infectious disease, lack a lot of background. As I note in the paper, many science-minded people still think that it’s enough to just educate people about vaccines properly, and that will be enough. While accurate information is indeed important, for many individuals on the vaccine-hesitant spectrum, it’s not only about misinformation, but also about group identity, previous experience with the health care field, and much more.

Still, vaccine advocates can get involved in a number of way. One of the easiest is simply to discuss your own vaccine history in order to normalize it. I regularly post pictures of my own vaccinations on social media (including my public Facebook and Twitter accounts), and those of my kids*. In over 17 years of parenthood, their vaccinations have all been…boring. These “uneventful vaccination” stories are the ones which rarely get told, as the media focuses on “vaccine injury” stories, in which the injuries may or may not actually be caused by vaccines. Those interested in promoting vaccines can write letters to the editor, get involved with local physicians to speak with hesitant families, break out and be political about vaccine exemptions; there are a number of ways that we can work to encourage vaccination and keep our children and our communities healthy (again, explored in more detail in the manuscript).

Figure 1: Examples of photos posted to the author’s social media accounts. Panel A: The author (middle) and her older children after receipt of seasonal influenza vaccines. Panel B: The author’s youngest child at Walt Disney World, wearing a shirt saying “Fully Vaccinated. You’re Welcome.” Both techniques can serve as conversation-starters around vaccination.

 

I hope this paper will serve as a starting point for those who want to be a vaccine advocate, but just aren’t sure they know enough background, or know where or how to jump in. Whether you’re an expert in the area or not, everyone can do small things to encourage vaccines and demonstrate your trust in them. Those of us working in the area thank you in advance for your help.

Reference:

Smith TCVaccine Rejection and Hesitancy: a Review and Call to Action. Open Forum Infectious Diseases, 2017, in press.

 

*AKA, how to get your kids’ pictures into a scientific paper.

Interview with HIV denier-turned-science-advocate John Strangis

Long-term readers of the blog know of my interest in HIV denialism, especially as it is maintained and spread via the Internet. In my online travels, I recently met John Strangis via this blog post. John has an interesting story to tell regarding his experiences with HIV denialism and subsequently, his turn to patient and science activism. Many thanks to John for sharing it here.

John and family
John with his wife and son.
TS: Can you tell the readers a bit about yourself?
JS: My name is John Strangis. I was born in the United States from Italian parents but lived for fifteen years in Italy when I was brought there at 10 years old after my dad retired; I lived there for 15 years before moving back to the States. I have a technical degree in network engineering and computer tech support and have worked in this field until I was laid off in 2010. After my layoff I developed a love for cooking, self taught myself in culinary arts and discovered I was quite talented so I decided to start my own cooking show on youtube. Along with my youtube channel I run a blog where I post HIV/AIDS information, recipes or anything else I may feel like writing about. I also have a passion for science and medicine, which are topics I love to study on my own as a hobby and also because as an HIV/AIDS activist, I find it important to be knowledgeable about certain issues so I can do a better job informing people about HIV through my activism work which I do through my blog and social media. I am a Social Ambassador for Get Tested Coachella Valley; a region wide public health campaign dedicated to dramatically reducing HIV by making voluntary HIV testing standard and routine medical practice and ensuring linkage to care. I believe it is important for people to see that the H in HIV stands for human and being a heterosexual man living with HIV and a public figure, my work can show others that HIV is a condition that affects us all, can help reduce the stigma and discrimination against people living with HIV and encourage others to get tested and treated.
TS: When were you diagnosed as HIV positive? What was your initial reaction?JS: I was diagnosed with HIV in 2011 after learning that my partner, Jessica was living with HIV. I met her in 2007 and she didn’t disclose her status to me out of stigma and fear of being rejected and although I already knew she was living with HIV because I found her prescriptions for HIV medicines, I decided not to hold it against her because I cared for her deeply. When we started seeing each other she made the mistake of throwing her antiretrovirals away and when I discovered she did so, I strongly urged her to tell me the truth because if she was living with HIV as I believed, the last thing I wanted was for her to fall ill because she was not on treatment. Well, my concern became a reality when after four years, she ended up in the hospital with pneumocystis pneumonia. Fortunately she got better and returned on treatment and I reassured her that if after testing, I was also found to be positive, we would deal with it together and I would never leave her side because of it. It did happen that I tested positive for HIV but my initial reaction wasn’t one of fear; I was aware that HIV today is a manageable chronic condition and just viewed my new status as another bump in the road of life and started researching HIV/AIDS to learn as much as possible for us to be able to live a long and healthy life regardless of living with HIV.

TS: How did you become introduced to HIV denialism? Can you describe your involvement with this movement?

JS: It was during my research on HIV/AIDS that I stumbled upon the denialist information; information which is quite easy to find when doing a search for HIV on google. I was into conspiracy theories at the time and the thought of HIV being a conspiracy was something I found pretty interesting to say the least. I asked questions about the denialist information on official HIV/AIDS websites and was banned for doing so by moderators who told me that I was parroting denialst propaganda. This censorship reinforced my belief that perhaps the denialist information had some truth behind it, without knowing that the reason I was banned was because this information can be and is a danger to public health. I searched for denialst groups to attempt to make contact with these people in order to learn more and this led me to joining the Facebook group “Rethinking AIDS”. Eventually, I decided to become a vocal speaker for the denialists because I believed at the time that their information was genuine and I wanted to do the best I could to spread this information in the hopes of helping other people.

During my time with them I was advised not to speak to certain people from the “orthodox side” because they’re all lying shills and sociopaths or not take seriously scientific information on HIV because according to the denialists it’s all propaganda from the “AIDS establishment”. Once I lifted my confirmation bias and decided to disassociate myself from Rethinking AIDS and denialism in general, it caused a wave of attacks, anger, disbelief and insults with some members even alluding to the fact that I was the leader of Rethinking AIDS at the time. Of course I wasn’t and I always reminded them that I was and independent even if I was supporting their point of view regarding HIV/AIDS. You can say I was very involved with the movement; I spoke on radio shows about denialism, filmed my own youtube videos, wrote my own articles about denialism and attempted to inform every person I could about the denialist information.

TS: You mentioned the notorious HIV denialism documentary “House of Numbers” in your blog post. What did you find so compelling about that movie?

JS: The most famous denialist documentary happens to be “House of Numbers” and denialists recommend the viewing of this film to everyone they speak to because according to them, this documentary and others like it prove their allegations that HIV is a scientific fraud. It does so by attempting to show people how HIV tests are unreliable, HIV has never been isolated, HIV drugs are the cause of peoples’ illness and death, etc. I can honestly say I believed the same until I viewed the youtube series “Debunking the AIDS Denialist Movie House of Numbers” by Myles Power. His series deconstructs “House of Numbers” to show you that the film is nothing more than a biased piece of denialist propaganda. I was aware of Myles’ series when I was still a denialist and never took it seriously because for me and others, his series was nothing other than propaganda from the “AIDS establishment”. Once I disassociated from denialism and lifted my confirmation bias, I decided to give Myles’ videos another watch and this time I could see clearly how deceptive the movie “House of Numbers” is. The film contains interviews with scientists that have been edited in such a way to make people believe these scientists support the idea that HIV is a fraud, when in reality many of their statements were taken out of context and some have even released statements to clarify their real position on HIV/AIDS. People to this day are being misled into believing “House of Numbers” is proof that HIV is a fraud, when in reality it’s a cleverly designed tool of denialist propaganda.

TS: What caused you to modify your stance?

JS: During the last year with the denialists, Jessica and I had a son who was born negative for HIV because my she and my child received the appropriate treatment to avoid vertical transmission. I was still entrenched in denialism during the birth of my son and was not too happy about the doctors wanting to give AZT to my wife and newborn child but decided to do so for two reasons. The main reason was the worry that the authorities would force treatment on my son but the second reason was a thought that crossed my mind: What if I was wrong? We opted for the treatment and hoped for the best and although everything worked out fine for us; the denialists chastised us for our decision. The final blow which led to my disassociation from denialism was when months after our son’s birth, my wife Jessica fell ill with pneumocystis pneumonia again; this time so severe she almost died. Jessica restarted treatment after falling ill the first time in 2011 but only stayed on treatment until we joined the denialists; we both stopped treatment during our time with them because as they preach, we believed the medications were toxic poisons and the real cause of AIDS. Something was definitely not right here and I decided to end my time as and HIV/AIDS denialist. Fortunately Jessica recovered and we are back on treatment but this choice and our disassociation from denialism caused us to be attacked, insulted, unfriended on Facebook by many people I was associated with; something akin to being thrown out of a cult, actually.

TS: What has been the response you’ve gotten from the denialist community? How have you and your wife handled it?

JS: As I previously mentioned, we were attacked, insulted and even my son was brought into the filth they spewed against us. The president of the group “Rethinking AIDS”, David Crowe, accused me of selling my soul to the devil, many others continued to harass me and even told me that our decision to get back on treatment will result in the death of my whole family. My wife and I have pretty thick skins and while she ignores them and is happy she is doing better now, I use my knowledge to help other people avoid the same trap we fell into in the hopes that perhaps I can do some real good this time and avoid people’s suffering because they were fed and believed incorrect medical information. The best example I can make of how we were treated by the denialist community after our disassociation would be how a member of Scientology is treated once he or she decides to abandon the church. To the denialists we are nothing more than human garbage. I was called a shill and a sellout, and they accuse me of leading people to the death camps because today I promote HIV/AIDS awareness instead of pseudoscientific nonsense. The denialists in my eyes are a cult; too bad I did not see this before becoming entrenched into their dogma and becoming a voice for their agenda.

TS: How do you feel others can avoid being miseld (potentially dangerously so) by the denial movement?

JS: In the past, censorship of denialist information was the norm; pretend it doesn’t exist and hope nobody will notice. I believe that people should be informed about the dangers of eschewing necessary treatment for HIV and what can possibly happen to them if they do. I have people writing to me daily asking for help or wanting to hear my story because they got involved in denialism and are falling ill but don’t know what to do. Although I cannot and do not offer medical advice, I share my story in the hopes that they make the best choice for themselves. It’s great to also hear one of these same people write to me again down the road to thank me because their health has improved after returning on or starting treatment. Articles such as this one and many others exposing the denialist agenda are a great help and I will continue to do my part to make sure people understand the risks they are taking when getting involved with HIV/AIDS denialism. Giving people the correct information regarding HIV/AIDS, how today it is no longer a death sentence and that on treatment they should expect to live a long and healthy life comparable to a person not living with HIV is also very helpful. For now me and a few others are the only voices speaking against denialism but there should be more. In some countries it’s illegal to disseminate incorrect medical information and I believe such a law could prove to be of some benefit in this country as well. The article entitled “Can You Inoculate Against Science Denial?” is a great read and explains very well what we are facing today and how to approach this issue.

TS: What message would you pass on to others who are newly diagnosed?

JS: If you’re newly diagnosed, the treatments today can keep you healthy and living a long life comparable to a person not living with HIV and there are many people and organizations that can offer you support; you are not alone. Remember, HIV doesn’t define you, you define HIV. Being newly diagnosed is a life changing experience, but it doesn’t have to be a bad experience. By getting tested and getting into treatment, you are taking control of your health. Become informed as much as you can about HIV. Ask your doctor questions, research, reach out to support groups and if you happen to stumble upon the denialist information, make sure you know what you’re possibly getting yourself into before jumping on the bandwagon. If anyone newly diagnosed is reading this and would like to contact me for information or support, feel free to reach out.

A conversation on smallpox and vaccination with Dr. William Foege

I can hardly do Dr. William Foege justice with a short introduction. He is one of the scientists who led the global smallpox eradication efforts. He developed the concept of ring vaccination, which targeted vaccination to those individuals around a known case of smallpox. This concept really made eradication possible, as it eliminated the need for universal vaccination.  Following the success of the smallpox campaign, he has worked tirelessly to increase global vaccination rates.  He led the effort to provide low-cost treatments for river blindness, resulting in an immense reduction in that disease in Africa. To read some of his amazing stories of his time in the field, check out his autobiography and chronicle of smallpox’s demise, “House on Fire: The Fight to Eradicate Smallpox.” He’s currently a fellow at the Gates Foundation after serving with the Carter Foundation and spending time as the director of the CDC. I could go on and on about his positions and awards, but suffice it to say, he’s a man who knows his stuff.

Dr. Foege was generous enough to answer my questions on vaccination and on smallpox in particular, after I ran across a particularly egregious anti-vaccine article which suggested that use of the vaccine actually increased smallpox cases, and did nothing to eradicate the virus. He also discusses what vaccine supporters can do to promote vaccination.

TS: You have certainly encountered resistance to vaccination in your day, and much misinformation about and fear of vaccinations. How did you overcome this misinformation and fear when working to eradicate smallpox, and later in your career to increase rates of vaccination overall in the developing world?

WF: The first anti-vaccination movements appeared immediately after Edward Jenner introduced smallpox vaccine in 1796.  I start from the premise that parents want to do the right thing for their children, and when they don’t it is because of misinformation rather than evil intent.  While resistance was found in many countries, the fear of smallpox overcame many of the problems.  When people observed a decreased risk of the disease in those vaccinated it was a powerful message.  Now parents don’t always see the disease impact and therefore have a harder time weighing risks.

An overwhelming concern in recent years has been the concern about autism.  We know the studies are good showing no increased risk in children who have been vaccinated, but parents are often left with the first impression when that concern was voiced some years ago and have no way of following the literature.  They have been poorly served by Andrew Wakefield.  We now know that his article in the Lancet was more than poor science.  He fabricated and received money from a lawyer.  He lost his license and yet he continues to give talks to parents looking for an answer to autism.  So he not only lost his license but he lost his way.

The research, by the way, is pointing to something that happens in the second trimester of pregnancy as a cause of autism, not something that happens after birth.

TS: Unfortunately, there is rampant misinformation today even in developed countries. A common anti-vaccine message is that “vaccines didn’t reduce” measles, polio, etc. A recent post even claims that “Small pox had greatly declined before the vaccine, increased after the vaccine in westernized countries, and was effectively eradicated in third-world countries due to the surveillance and containment quarantine program. The small pox vaccine was actually flawed, deadly, and ineffective, killing many and inflicting even more with serious adverse reactions. Small pox eventually exterminated itself when people had access to clean water, good food, clean living conditions, and proper hygiene.” (Source) As one who led smallpox eradication efforts in Africa and India, can you address the claim that what led to the elimination of smallpox was hygiene and quarantine rather than vaccination?

WF: I would never speak against clean water, good food, clean living conditions and proper hygiene, but that is not what eradicated smallpox.  Smallpox was almost a universal disease in Europe at the time the vaccine was developed in 1796.  Even in the 20th century there were an estimated 300 million deaths from smallpox worldwide.  The surveillance/containment strategy was based on using vaccine and getting it to the people at immediate risk because they were in the vicinity of people with smallpox.  Quarantine of smallpox patients in their homes was part of the strategy in order to reduce the number of people they could expose.  Visitors were allowed into their homes but only after being vaccinated.  The science of vaccine preventing smallpox is so abundantly clear that it is difficult to imagine one looking at the evidence and reaching the conclusions cited above.  The same is true of measles and polio.  Measles killed large numbers of children in Africa and Asia before vaccine was introduced.  The number of measles deaths was over 3 million a year in the early 1960’s and has been reduced by over 90% with the introduction of vaccine.  The people who ascribe the reductions of cases in measles, polio and smallpox to hygiene provide proof to Mark Twain’s comment that people who don’t read have no advantage over people who can’t read.

TS: Another common anti-vaccine claim is that “herd immunity is a myth.”  Would smallpox eradication have succeeded if this was the case? 

WF: Herd immunity is a complex subject.  There is no percentage of protection that will automatically protect others.  For example, 90% smallpox vaccination in a state such as Bihar, India, would still allow more susceptible people per square mile than 10% smallpox vaccination in most of the United States.  Measles virus is so contagious that it seeks out susceptible children with tenacity.  Introduce a person with smallpox to a room of susceptible children and only about a third will have smallpox one incubation period later.  Do the same with a case of measles and 80% will have the disease one incubation period later.

However, the concept is correct that increasing the number of persons protected in the population will decrease the chances that an organism will be passed on.  Not only is the vaccinated person protected but they can’t pass on the disease to others.  At high levels of coverage the remaining population receives great protection.  With surveillance/containment in smallpox eradication, our objective was to vaccinate all contacts of a person with smallpox and in that sense attempt to get 100% of close contacts protected, a form of herd immunity in a small defined group.

TS: You were instrumental in increasing vaccination rates in developing countries in years past. What are your thoughts on those who sit in a position of privilege in the U.S., eschewing vaccines and declaring vaccine-preventable diseases “harmless” while many of them have never seen a case of polio or measles?

WF: It would be nice to be protected from both the diseases and the small risks of vaccine.  But it doesn’t work.  The social contract requires that we all participate or the diseases will come back.  Every pregnant woman in this country should be aware that their child will not have Congenital Rubella Syndrome.  Why?  Because other children have been vaccinated against rubella and while they get no direct benefit, they have stopped the transmission of the virus to a fetus.  It is a social contribution they can be proud of providing.  Parents who withhold vaccines from their children are doing their children a disservice. They put others at risk if their children get a vaccine-preventable disease and they have also put their children at increased risk if they want to travel abroad as students or later as adults.  It has turned out to be a heavy burden for parents who have lost their children in recent measles outbreaks.  Indigenous measles has disappeared in this country so every case can be traced to importations.  But we have continuous importations and at times we have had large outbreaks because of the many children are unvaccinated.

TS: In your campaigns against smallpox, for global vaccinations, and for the distribution of ivermectin to treat river blindness, it seems like you have frequently played the role of diplomat in addition to scientist/physician: bringing together people from opposing “turfs” to come to a mutually beneficial understanding and outcome. Do you have any advice for those of us working on raising vaccine awareness in the current U.S. climate, and how we can work to better play the role of diplomat as well?

WF: First, know what we all want.  Our children to be healthy.  Both sides can’t be right (although as Lincoln pointed out they could both be wrong!) so what information is needed to reach a decision?  Immunization rates have improved on Vashon Island because parents got together to try and understand why the difference of opinion.  My belief is that Andrew Wakefield so poisoned the well that the facts have to be explained before there can be common ground.

I often tell students that health leadership today is found not in a title but in a person that can make a coalition work effectively.  We need many coalitions to discuss this at local levels to discover what do the anti-vaccination people need in the way of information.  There has been a movement by some pediatricians to say they can’t care for children who are not immunized.  I understand the feeling but feel those are exactly the children who need care because they already have a strike against them because of parents not understanding the science.

You can make a great contribution by making the science clear, encouraging feedback and providing reassurance to the parents who need support.  Autism is such a difficult burden for parents that they want answers.  They need help in getting what is known about the science.  They are not helped by erroneous information.

 

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Superbugs rising

It’s a parent’s worst nightmare. Your healthy child is suddenly ill. The doctors you’ve trusted to treat him are unable to do anything about it. Drugs that we’ve relied upon for decades are becoming increasingly useless as bacteria evolve resistance to them. New drugs are few and far between. Old drugs, shelved because of their toxic side-effects, are being brought in as last resorts–kidney failure, after all, is better than certain death.

Unfortunately, this is increasingly the state of medicine today, and people are dying from it. The World Health Organization even recently sounded the alarm, noting that “the world is headed for a post-antibiotic era”–and it takes a lot of consensus to get the WHO to act, so this is a Big Deal.

I was in Washington, DC last week for two days to discuss the issue with other “supermoms” and dads (farmers, physicians, researchers, and parents whose children had experienced antibiotic-resistant infections), and to share information with legislators and government agencies. (I also brought William, 4 months old, for an extra dose of adorableness).

Superbabies against Superbugs
Superbabies against Superbugs

Some of the “super” attendees might be familiar to readers. I had the pleasure of meeting Russ Kremer, who has been profiled in several articles and documentaries. Russ raised pigs in confinement, dosing them with antibiotics from birth to slaughter until he was gored by a boar, resulting in a very difficult-to-treat infection that almost cost him his life. David Ricci was also present. His story was profiled in the Frontline documentary, “Hunting the Nightmare Bacteria.” He contracted an infection with bacteria carrying the NDM-1 genes, making them resistant to almost all known antibiotics, and required multiple surgeries and treatment with some of these last-line drugs over many months.

There were also participants you may not have read about previously, like Amanda Hedin and Everly Marcario, who both lost children to antibiotic-resistant infections. I’ve written before about the immense sadness that comes at times when studying infectious disease, noting that I have a freezer full of bacterial isolates that, while important for study, frequently mark someone’s illness or death. It’s important work, but heart-wrenching at times.

However, we have very little funding to study such infections. My colleague Eli Perencevich recently estimated the amount of money spent on antibiotic-resistant infections versus HIV/AIDS, and the answer is that it’s vastly less. Antibiotic resistance needs to be a priority on many fronts. The FDA has recently made some headway into possibly reducing antibiotic use on farms, though optimism is mixed regarding how much that will actually help things. Hospitals and clinics are working with physicians to encourage and enforce best practices for antibiotic prescribing in these settings.

We need to be responsible with antibiotics. Drugs in development are scarce, and none are ready for prime time. It’s almost unimaginable that we may return to a time when an infected scrape could mean the death of a healthy young man, but we’re closing in on that every day. The WHO wrote in their report:

“A post-antibiotic era, in which common infections and minor injuries can kill, far from being an apocalyptic fantasy, is instead a very real possibility for the 21st century.”

We need action, not promises. And we need it now.

Matt Damon: no poo for you

Readers may be familiar with Matt Damon’s charity work with water.org, an organization he co-founded. Water.org seeks to raise awareness of the lack of clean water by almost a billion people on earth, and lack of toilets by almost 2.5 billion–and more importantly, they work to remedy that situation by providing sustainable, local solutions. His new video brings awareness in a rather unorthodox manner: he’s refusing to go to the bathroom until everyone on earth has access to clean water and toilets.

Obstetric fistula as a neglected tropical disease

Mahabouba*, age 14, was sold into a marriage as a second wife to a man 50 almost years her senior. Raped and beaten repeatedly, she ended up pregnant, finally succeeding in running away 7 months into her pregnancy. Fleeing to the nearby town, she found that the people there threatened to return her to her husband, so she ran back to her native village in Ethiopia. However, her immediate family no longer lived there. An uncle eventually took pity on her and provided her with housing. When Mahabouba went into labor, lacking resources, she tried to deliver her baby herself. Her pelvis was still too small for the baby’s head to pass through, and she ended up in obstructed labor for 7 days before a birth attendant was finally called in to assist. By this point, the tissue of between the baby’s head and Mahabouba’s pelvis had become necrotic due to lack of blood flow. The baby was stillborn and Mahabouba had developed a fistula–a hole had formed between the tissue in her vagina and her rectum. She had no control of her waste elimination, and couldn’t even stand up due to damage to her nerves.

Her uncle wanted to help her, but the common belief was that women who experienced such tragedies were cursed by God. She was moved to a hut at the edge of the village and left to fend for herself against circling hyenas. Eventually, still unable to use her legs, she crawled to another village searching for help. Found by a missionary, she was taken to the Addis Ababa fistula hospital. The damage to her body was too severe to completely fix, but she received a colostomy which allowed her to at least live in society, and eventually she became a nurse’s aide at the hospital.

Mahabouba’s story, on the grand scale of things, is a success story. It’s estimated that up to 3.5 million women currently suffer from fistulas, with somewhere from 50,000 to 130,000 new cases each year–and most of them go untreated. Because many of these happen in rural areas lacking health care providers, it’s difficult to get at exact numbers, and there is little push to obtain them. A woman quoted in Kristof and WuDunn’s “Half the Sky,” an Australian gynecologist who has worked in Ethiopia for more than 30 years, notes that women with fistulas “are the women most to be pitied in the world…They’re alone in the world, ashamed of their injuries. For lepers, or AIDS victims, there are organizations that help. But nobody knows about these women or helps them.”

A new paper aims to change that. Out today in PLoS Neglected Tropical Diseases, Dr. L. Lewis Wall of Washington University in St. Louis argues that obstetric fistula should be included among the neglected tropical diseases (NTDs), which currently include a variety of infectious conditions. NTDs typically are present in warmer climates, and they disproportionately affect the “bottom billion” of the world’s population–the poorest of the poor. They also lack attention from the research community, particularly when it comes to funding priorities.

Though obstetric fistula isn’t an infectious disease, it certainly fits the other parameters for a NTD. “The emphasis on infectious diseases has meant that other important forms of morbidity and mortality have been neglected,” explained Wall via email. “Surgical services are not high on the list of most public health interventions and infectious disease specialists and public health workers are, in general, ill-equipped to deal with surgical issues or obstetric issues. This would mean focusing attention on a huge category of human need that is also neglected as are the traditonal NTDs and could mean a significant uptick in funding for programs to deal with maternal health generally, and obstructed labor/obstetric fistula particularly.”

Indeed, history has shown that obstetric fistulas are fairly easy to prevent and treat, given the proper medical personnel and training. Once common in the United States (the Waldorf-Astoria hotel in Manhattan sits on the site of the first fistula hospital in the U.S.), Wall points out that they are now rare enough here that they merit case reports in the medical literature. Why are they so uncommon? Primarily, very few women in the U.S. are so unattended in childbirth that they would go days in labor without intervention. Rather, most would have a Cesarean section to remove the baby and thus the fistula wouldn’t develop in the first place. Access to this intervention is severely lacking in women in developing countries. “The Cesarean rate in the United States is over 30% (for various reasons) but in many African countries, the rate is less than 1%; well below the 6% needed to meet minimal maternal health needs,” points out Wall.

For women who do develop fistulas, surgical treatment has a high success rate–and is cheap. One of the tragedies of obstetric fistula is that the surgery to treat the injury in many cases costs only around $420–for less than the cost of a fancy TV, you could give a woman back her life. Still, that’s far above what most women in developing countries can afford to pay. Furthermore, even if every woman could afford treatment, “the surgical capacity to treat current fistula cases is woefully inadequate; probably only 10,000 cases per year, with 3-10 times that many new cases,” says Wall.

Unfortunately, there are painfully few treatment centers in developing counties. In addition to the facility in Ethiopia, Dr. Wall is also one of the founders of the Danja fistula center in Niger, which opened its doors earlier this year. There are others scattered throughout continent, but given the rarity of surgical expertise and the frequency of obstetric fistula, the need far outpaces the personnel available. Nevertheless, early attention and surgical intervention are both needed. Wall notes, “The most important thing is identifying prolonged labor and intervening before a fistula develops. There are pilot studies using village health workers to identify women who do not delivery in a timely fashion and to route them to centers for more advanced obstetric care, but these are few and far between. There are programs to train emergency medical technicians who can perform Cesarean sections without being fully qualified doctors; there has been some success with this. With rare exceptions, however, fistula surgery requires surgical skill, long training and experience, so healthcare systems must develop the capacity to perform this kind of work, even when patients are not popular or wealthy enough to ‘pay’ for services.”

While obstetric fistula mirrors many other NTDs, there is one way it is also unique–it affects women solely, and particularly very young women (age 12-14) whose bodies have not developed enough to safely bear children. Maternal health is already a sorely underfunded area of research. Every day, even in 2012, 800 women die from causes related to pregnancy and childbirth, and 99% of those are in developing countries, particularly in rural areas. A midwife working in Ethiopia and quoted in “Half the Sky” lamented, “If this happened to men, we would have foundations and supplies coming in from all over the world.” The inclusion of obstetric fistula into the umbrella of NTDs could open up new funding streams and awareness, and bring us one step closer to this goal.

_____________________
*Mahabouba’s story is told in “Half the Sky” by Nicholas Kristof and Sheryl WuDunn, pages 93-97, as well as in this New York Times article. Other women’s stories can be found at this site.

Works cited and further reading

Wall, LL (2012). Obstetric Fistula Is a “Neglected Tropical Disease” PLoS Neglected Tropical Diseases, 6 (8) Link

Kruk et al. (2007) Economic evaluation of surgically trained assistant medical officers in performing major obstetric surgery in Mozambique. BJOG.

White et al. (1987) Emergency obstetric surgery performed by nurses in Zaïre. Lancet.

Wilson et al. (2011) A comparison of clinical officers with medical doctors on outcomes of caesarean section in the developing world: meta-analysis of controlled studies. BMJ.

Kristof and DuWunn (2009). Half the Sky: Turning Oppression into Opportunity for Women Worldwide. Knopf, New York.

Epidemiology and social media: conference fail

I have written and deleted this post. Twice. But damn it, it needs to be said.

I’m here in charming Montreal for the North American Congress of Epidemiology. It’s a good-sized meeting, as far as epi meetings go. The site notes that it’s a joint effort between four major Epi organizations: The American College of Epidemiology (ACE); The Society for Epidemiologic Research; the Epi section of the American Public Health Association, and The Canadian Society for Epidemiology and Biostatistics. Collectively, those associations represent a lot of epidemiologists.

The conference started off well. The first night kicked off with a movie about bioterrorism preparedness followed by a panel discussion. Great–movies! Engaging public in novel ways! Love.

On to Wednesday, when the first real sessions begin. The opening plenary discussed Science, skepticism, and society. Great again–this is a perfect warm-up. Later that afternoon, there was another session titled “Communicating Epidemiology: The Changing Landscape”. I was happily surprised when the room for this was pretty packed, as these types of meetings tend to be heavy on chronic disease epi and epidemiology methods. However, I was disappointed with the content. While the first talk was to give “a snapshot of how premier science journals experiment with features that blur old distinctions: blogs, data repositories, standard-setting, and advance online publications,” almost none of that was discussed–instead, it focused on how Nature Genetics was doing…something….about datasets. (Unfortunately I don’t have great notes and was at this point still trying to get the wifi to work; more on that later). Either way, it wasn’t anything as advertised in the description I quoted above, and it discussed *only* Nature Genetics–surely there are more “premier science journals” than just NG? (Why only NG discussed? The talk was by Myles Axton, who is the Editor).

Next on tap was Jennifer Loukissas, communications manager at the National Cancer Institute’s Division of Cancer Epidemiology and Genetics, to discuss “When epidemiologists talk to press and public.” However, there really wasn’t any “public” involved–it was a media training session. Period. Use soundbites, stay on target, think about your message, control the interview, call the journalist back in 5 minutes if you need to collect yourself, etc. Good stuff for scientists to know, to be sure, but isn’t there a world out there beyond talking to journalists? More on that later as well.

The third talk was Jonathan Samet of USC, on “Communicating around conflict.” He’s recently worked on the WHO cell phone-and-cancer opinion that was released earlier this month, and essentially extended what Loukissas began as far as what to and not to say to interviewers, particularly in controverisal areas.

This was not exactly my idea of science communication in 2011, especially since everyone agreed at the beginning of the session that scientists were terrible communicators, our messages frequently ended up getting distorted, all the typical canards. Merely telling scientists to stop being so jargon-y and prepare soundbites–while necessary–isn’t going to solve these problems.

During the (very brief) Q&A, I asked about scientists directly communicating with the public–via their websites, blogs, web video, etc., to get their own message out there and not have to worry about journalists messing it up. Loukissas was the main one to answer the question, saying–incredibly–she hadn’t thought about that.

It was all I could do to keep myself from saying “d’oh!,” complete with facepalm.

The reality is that scientists don’t have to be passive any longer, relying only on reporters to translate their work for them in order to send it along to the public. We should have our soundbites, but realize that we can go beyond our manuscripts (I’ve had ones recently trimmed down to 1200 or even 800(!) words). We can write about the research if it’s behind a paywall. We can write about the realities of doing our work as a jumping-off point after a journalist covers your research, and go beyond the dry data that goes into the paper. We can go beyond the press release and talk about what may be interesting to us about our findings, but maybe aren’t the “meat” of the publication, or are secondary to the “main point” that you’ve worked on for your soundbites and want to emphasize to interested journalists. We can elaborate on interesting research done by others, to discuss subtleties that you can’t fit into a 20-minute interview.

And more.

Communication-wise, this meeting has unfortunately been a bit of a letdown. The science is interesting and there have been some great speakers, but I haven’t been able to share much of that because wifi wasn’t arranged for in the conference rooms. I have internet in my room ($14.95/day, of course), but the password from my hotel room isn’t valid downstairs (something it took me almost a day and a half to find out, after getting the run-around from various people), and the organizers either didn’t care, didn’t think, or couldn’t afford to allow attendees to use the wifi network in the hotel conference rooms. So while I was able to take conference notes from the American Society for Microbiology meeting right on Twitter and share them with everyone via the conference hashtag, not so for this meeting. (ASM even had their own mobile app for smartphones).

The thing is, *epidemiologists need to be plugged into these kinds of things.* So many of the studies reported in the media have to do with epidemiological topics–cell phones and cancer, vaccines and autism, “chronic” lyme, does the internet really give you “popcorn brain”, just to take one current story from CNN. We can’t sit in our towers and just wait for a journalist to call us about those studies anymore–and why should we?

Last year, Craig McClain wrote about why scientists need to use Twitter. That post, while good, focuses mainly on the benefit to the scientist (though he does note that the public can also find information there). We need more of this. We need good, reliable information to be out there on the internet, freely available–and if that’s not possible in your academic publishing model, it’s still possible with a blog, or YouTube video, or basic website that you keep updated with recent news. Epidemiologists are certainly using social media and Google to explore disease; why not give back by wading out there and actually taking part in the conversation?

CBS airs anti-vaccine Jumbotron ad

Via Skepchick, CBS will be airing ads from the National Vaccine Information Center and Mercola on the CBS Jumbotron in Time’s Square (NVIC announcement here). This, while there’s a measles outbreak in Minnesota (and another one being investigated in Utah), and we’re on the heels of the worst pertussis outbreak in generations in California. Shameful.

Hello,

I recently learned that CBS will be playing ads featuring misinformation by the National Center for Vaccine information Vaccine Information Center. These ads are misleading and potentially dangerous. Vaccine-preventable illnesses have had a resurgence in the past decade, and there currently is an ongoing measles epidemic in Minnesota. Pertussis cases (and deaths) hit a record high in California in 2010. Much of this increase in disease is due to unfounded fears about vaccination, pushed by NCVI, Mercola, and even your own Sharyl Attkisson.

Recently AMC theaters did not run similar anti-vaccine ads (http://getsatisfaction.com/amc_theatres/topics/remove_the_unfounded_anti_vaccine_message_from_your_ads). Until a similar solution is reached by CBS, I will boycott CBS TV shows and sponsors, and ask others to do the same. I am an infectious disease epidemiologist and have seen the dangers that can result from vaccine misinformation. Please do not be complicit in spreading these dangerous lies to your consumers.

Thank you,

Tara C. Smith, PhD

(Some other template language can be found here).

You can also sign the petition at Change.org, email CBS (jeremy.murphy@cbs.com, info@cbsoutdoors.com) and tweet @CBSoutdoors to let them know your thoughts on this development.

Rock Stars of Science, part deux: coming to a GQ near you

The second edition of the Rock Stars of Science is now out online, and in the November 23rd (“Men of the Year”) edition of GQ magazine. As Chris Mooney notes, this is a campaign funded by the Geoffery Beene Foundation, working to raise recognition of scientists’ work (and scientists, period, since roughly half of the American population can’t name a single living scientist). Part of the campaign is to make science noticeable and “cool;” I’ll quote from the press release:

ROCK S.O.S™ aims to bridge a serious recognition gap for science, observes journalist Chris Mooney, co-author of the recent book, Unscientific America, and a partner of the campaign.

“The current gap between science and our popular culture,” says Mooney, “keeps Americans from recognizing the centrality of science to their daily lives. They think science is some strange activity performed by slightly geeky others in white coats. In fact, science fuels our economy and is our great hope for cures to diseases that affect all of us.”

“The RSOS™ campaign shines the spotlight on this critical national issue,” says G. Thompson Hutton, CEO and Trustee of the Geoffrey Beene Foundation, supported by the designer menswear brand Geoffrey Beene, LLC, which dedicates 100 percent of net profits to philanthropic causes. “If we invest in research, we will save lives now and trillions of dollars later.”

So, I think it’s a great cause, and a unique way to spread the word. From that side of things, I’m all for it.

But… (there has to be a “but,” right?)

The first campaign didn’t exactly knock my socks off. Chris gives an update on the participants at The Intersection; if you read through it, you may notice the 2009 participants had many things in common: they were universally older, white men. To be sure, they include older white men doing great things (Tony Fauci, head of the National Institute of Allergy and Infectious Diseases, NIAID, was one of those featured)–but they promoted the stereotype of scientists as, well, old white guys.

This time around, the lineup is more diverse, featuring 17 scientists–including 4 (white) women and 2 men of color (though still, mostly older). The scientists chosen include notables such as Nobel prize winner Elizabeth Blackburn and physician/astronaut Bernard Harris. The lineup is also heavy on cancer researchers and other biomedical types; understandable, since they are focused on disease and cures. I realize these are easier to “sell” to the public, because we all know someone who has experienced cancer–but if the foundation does a round 3, perhaps some more physical scientists could be included? Even if they maintained the focus on health, climate change, for instance, has the potential for huge impacts on health–and many engineers, physicists, and chemists work on health-related problems.

They also have a cutesy Q&A with each scientist, providing them all the same questions. Some I find to be fairly lame (“What was your worst part-time job?” “Alternate career choice?” “Longest med school study session” [!? why the emphasis on med school?]), along with some that I think make a better impact, like discussing misconceptions of their work, or their best moment in science/research. I realize the “lame” ones are to help the audience see that scientists are just like them, and spent time in crummy jobs, but diversity in the questions would be nice to shake things up a bit. Then they have a portion where the scientist’s research is described…which is terrible. I don’t know if this made it into the print version or is only online, but in many cases, these descriptions are lifted right off the scientist’s professional website. Look at Catriona Jamieson’s, for instance (taken verbatim from her lab website):

Dr. Jamieson specializes in myeloproliferative disorders (MPDs) and leukemia. Myeloproliferative neoplasms are a family of uncommon but not rare degenerative disorders in which the body overproduces blood cells. Myeloproliferative neoplasms can cause many forms of blood clotting including heart attack, stroke, deep venous thrombosis, and pulmonary emboli and can develop into acute myelogenous leukemia. Although some effective treatments are available, they are laden with serious side effects. In addition, individuals can become resistant to the treatments. Dr. Jamieson studies the mutant stem cells and progenitor cells in myeloproliferative neoplasms. These cells can give rise to cancer stem cells. Cancer stem cells may lie low to evade chemotherapy and then activate again later, causing disease progression and resistance to treatment. Her goal is to find more selective, less toxic therapies. In the past two years, Dr. Jamieson’s stem-cell research studies have taken a great leap: from identifying a promising treatment in the laboratory to opening and completing the first clinical trial to target cancer stem cells in humans. This trial is the result of teamwork that has brought together her discoveries in myeloproliferative neoplasms and a local pharmaceutical company’s drug development track.

I mean, really?? I’m a scientist, and just reading that even made *my* eyes glaze over. If one thing they’re trying to convey is the importance and relevance of the scientist’s research to GQ readers, what percentage of the readers are really going to walk away with a deeper understanding of what Dr. Jamieson does by reading that description? It would have been a small thing to ask each participant to submit a layman-friendly version of their research (their “elevator talk” description, for example) for GQ to include.

Finally–one of the “scientists” is Dr. Oz. What is he doing in there? One, I would think he’s already well-known enough; why not save that spot for another scientist? Two, yes, I know he’s actually done research and published, and is on the faculty at Columbia. Fantastic. He’s also a serious woo peddler, who has even featured everyone’s favorite “alternative” doc, Joseph Mercola, on his talk show, and discussed how vaccines may be playing a role in autism and allergies (despite mounds of evidence to the contrary). This seems to completely contradict their goal of “research funding as a national priority,” since Oz is often (and Mercola is always) highly critical of “mainstream medicine.” I really don’t understand his inclusion, and think it’s to the detriment of the rest of the campaign.

I know, this is quite a lot of complaining (isn’t that what bloggers *do*?), but I’m sincere in hoping that this campaign does raise awareness. I hope they expand it beyond GQ–why not do something similar in magazines with a larger female readership, such as Good Housekeeping or even People magazine? Women are the ones who make many of the healthcare decisions, after all. We’re often advocates for health and healthcare research–and if more funding is what they’re ultimately looking for, we vote too.

[Edited to add: Science has an article on the campaign as well.]

Skepchicks are made of awesome–and they could use your help

The Skepchicks are sponsoring a pertussis vaccination clinic at Dragon*Con over Labor Day weekend. They’re teaming up with the Georgia Dept. of Health, who is providing free assistance and vaccines, but they need some assistance raising funds to cover space rental, posters, and other miscellaneous charges. If you’re able to assist, you can donate to their “Hug me! I’m vaccinated!” campaign at the links included in the post.

And while I’m nagging about donations, I’ll also note that donations to help the flooded in Pakistan have been slow, especially compared to the Haiti earthquake. If you can spare a few dollars, Doctors Without Borders is one of my favorite charities (though I’ve not seen a dedicated Pakistan donation page there), and here is one list of other charities working there. With either of these causes, remember that every little bit helps.