Accepting the #IceBucketChallenge as Someone Who Worked on ALS in Public Health

Friday, August 22, 2014

When people say it's a small world, they're sure as hell not kidding.

Before I left the U.S. to work in South Korea, I worked on a federally-funded ALS Surveillance Project for the state of Texas. I was employed by a federal contractor and assigned to work as an ALS Surveillance Specialist at the Texas health department. The project, which collect ALS data in designated states and metropolitan areas, is designed to strengthen efforts to build and evaluate the national ALS Registry currently being built by ATSDR, a federal health agency under the US Department of Health and Human Services that works closely with CDC. The three state-based projects have wrapped up, but the metro area projects are ongoing. ATSDR published its first paper related to the national registry last month.

Naturally, I learned a lot about ALS in the two years that I coordinated the project. I built relationships with stakeholders such as local ALS Association chapters (which merged to form one Texas chapter in 2012) and worked closely with specialised ALS treatment centers in Dallas, Houston, and San Antonio. I read a great deal about the clinical presentation, common treatments, and ethical considerations in treating patients and counseling caregivers. I visited with neurologists about the disease at conferences as we tried to get the word out about the project. I followed news, kept up with developments in research, and listened to academics and health professionals debate at meetings, often clashing verbally.

I lived and breathed ALS for two years. Similar to my colleagues on the Texas project team or in other states, however, I found that, aside from ALS advocates and healthcare professionals that were dedicated to treating neurological disorders, nobody seemed to know what it was.
"So where are you working?"
"I've taken a position at the health department."
"Oh, that's great! What do you do there?"
"I'm working on an ALS project for the state of Texas."
"ALS? What's that?"
After getting a few puzzled stares, I eventually started including a description of the disease with my job description. A few more people were familiar with it when you described it as "Lou Gehrig's disease," and sometimes I would get a "Oh yeah, I have an aunt who died from that." Occasionally I had the chance to explain how registries and epidemiological studies can be really helpful in understanding the causes of disease (it is still unclear what exactly causes ALS, and there is a genetic component in only about 5-10% of cases), but for the most part people's eyes just kind of glazed over before we went back to talking about football or how the Texas summer is so damn hot.

Which is why, at least to me, the "Ice Bucket Challenge" that has gone viral this week is such a positive thing. Many people have openly admitted to not knowing what ALS was until they took the challenge (some remain clueless, but for the most part I have seen that people who took it on have educated themselves). I have seen a lot of complaints that it is just another form of "clicktivism," and many have compared it to Kony 2012 or the use of the Arabic letter "nun" as a Facebook profile picture to draw attention to the persecution of Christians in the Middle East, but I disagree. "Making a difference" in the Great Lakes region of central Africa or the Middle East is difficult, given the complexity of the geopolitics in those areas. But ALS is different - it's an established neurological disorder with a defined epidemiology, unknown etiology and no effective cure or treatment. The way to address it is to raise awareness and fund research, and the fundraising power of this campaign speaks for itself: as of today, $53.3 million has been raised for the ALS Association.

After the challenge started making news headlines, I began to watch it with some interest, thinking back to the project that I worked on. Before I knew it, the challenge had entered both my professional and personal circles: several of my colleagues that worked on one of the other state projects, plus several expats that I knew in Korea, had been challenged - and soon I was challenged.

The current temperature in Austin, Texas is a blistering 97 degrees Fahrenheit (36 degrees Celsius). I accept.

Media Wars: #Ferguson, American Hypocrisy and a Hint of Spring

Wednesday, August 20, 2014

America has experienced an ugly spotlight reversal with the eruption of popular discontent into violence in its own backyard. Just a few weeks ago, international media was buzzing with reports of ISIS steamrolling the Iraqi military and Russian-supported separatists in Ukraine shooting down passenger airlines. Now, the US squirms uncomfortably under international scrutiny of Ferguson, Missouri, where the shooting of a young black man by a white police officer has once again raised the specter of racism and police brutality.

Obviously, the incident itself is complicated. Eyewitnesses - who have given conflicting testimonies - are the only window into what happened, since there was no dashboard camera. The initial description of Michael Brown, the victim of the shooting, as a "gentle giant" about to start college clashed with video footage of him stealing a box of cigarillos from a convenience store. Commentators have drawn parallels with the case of Trayvon Martin, whose mother has now reached out to Brown's mother. Peaceful protests have given way to violence and looting, reporters have been arrested, and witnesses have complained of excessive use of force by the police.

Social media, which played a major role in bringing media attention to Ferguson in the first place, has played host to the battleground of ideological responses to the incident. The primary complaint from conservatives is that the uprising in Ferguson, and the underlying racial tensions it has exposed, don't deserve our consideration because some of the protesters have been looting and vandalizing stores...


...including a few gems that actually blame the community for the excessive force used against it.


Meanwhile, people used the Twitter hastag #IfTheyGunnedMeDown to spar over which photos of Brown were used by traditional media (wearing a cap and gown vs. striking a "thug" pose) and post their own side-by-side pictures. Still others are expressing frustration at the fact that the vandalism and looting has been used as a straw man to distract from ongoing widespread racial profiling and policy brutality against blacks, including one refreshingly blunt protester at a rally in DC:


What has been the most interesting to me is the global shock and horror at the incident and resulting fallout. The international community sees what many Americans are apparently missing: that the protests and unrest in Ferguson are the manifestation of a minority group sick of being oppressed and ignored. The UN High Commissioner for Human Rights drew parallels to South African apartheid, while several countries have been using the situation to take shots at America's own human rights record when we so often criticize other countries. One might expect Iran and Russia troll the US over civil unrest, but as one friend of mine pointed out on Facebook, "When Egypt calls you out for human rights abuses, YOU'RE DOING IT WRONG."

American police brutality, and the unwillingness of many police departments to be held accountable for their actions, have also been focal points. What happened to Michael Brown will unfortunately always be shrouded in mystery, since the Ferguson police department apparently prioritizes riot gear and tear gas over cameras for officers or police cruisers. They also seemed to have forgotten the meaning of "free press," as they arrested and harassed several reporters who were trying to cover the protests. Interestingly, Obama was quick to condemn the bullying of journalists "here in the United States of America," despite his own administration's secrecy and aggression toward the press, including prosecuting a journalist who refused to identify the source of an intelligence leak.

Indeed, many observers have been quick to point out America's hypocrisy at fingering human rights abuses outside our own borders when we have threads of discontent, similar to those found in the Arab Spring and other global protest movements, woven throughout our own society. When protesters in Egypt, Turkey, Bahrain, and the Ukraine were throwing Molotov cocktails and breaking shop windows, observers viewed it as the natural - and understandable - result of the collective frustration of the oppressed and disenfranchised. The same commentators that were quick to decry autocratic governments for dismissing the protesters as "thugs" are now using the same language to describe Ferguson residents. A lovely little piece of satire from Vox portrays how American media might describe the events in Ferguson if they happened in another country.

When everything is said and done, America doesn't look so much like a shining beacon of democracy and human rights - we just kinda look like everybody else.

Fake AIDS Cures: Apparently Still a Thing

Tuesday, August 19, 2014

The Egyptian military is the latest government that's in hot water over making ridiculous claims of "miracle cures" for HIV/AIDS - among them, that electromagnetism can detect the virus and that they had a "complete cure device" (whatever that means). The saddest part, however, was that they received 70,000 inquiries about it.

Outlandish claims of cures for HIV/AIDS, while tragic and destructive, are by no means new. This article from NPR outlines the history that we apparently still fail to learn from:
The bogus theories of Peter Duesberg, a professor of biochemistry at the University of California, Berkeley, were responsible for a global setback to HIV treatment. Duesberg argued that combinations of drug use and promiscuous behavior caused the virus, and passed his advice on to South African health officials in 2000.

"The biggest disaster imposed on us was Duesberg with his statements that HIV did not cause AIDS," says Max Essex, chairman of the Harvard School of Public Health AIDS Initiative. Essex has been conducting research on AIDS since 1983, including field research in Botswana and Southern Africa.

Between 2000 and 2005, as neighboring African countries were ramping up HIV prevention programs, South Africa stubbornly stuck to the notion that HIV was not the cause of AIDS. "I think Duesberg played the biggest role in giving [former South African President Thabo Mbeki] a convenient excuse to avoid supplying drugs," says Essex.

Researchers including Essex examined the human toll of those lost years of treatment. Their results, published in 2008 in the Journal of Acquired Immune Deficiency Syndrome, estimated that 330,000 South African adults died because of lack of treatment, and 35,000 infants were born with HIV.

If that was the biggest disaster, no doubt the cruelest of the AIDS false cure claims was the virgin cleansing myth that took hold in sub-Saharan Africa, as well as parts of India and Thailand. Some men believed they could be cured of AIDS by having sex with a virgin. That reportedly led to the rape of younger and younger girls — even babies, by some accounts.

Other unproven AIDS "cures" have kept people from seeking life-saving treatments: herbal remedies, potions to rub into the skin, chemicals like Virodene (derived from an industrial solvent), oxygen therapy and electronic zappers.

North Korea Tourism Video Goes Viral, Despite its Horrendous History of Human Rights Abuse

Monday, August 18, 2014

Apparently a video advertisement for travel to North Korea, "Enter Pyongyang" has been making the rounds on social media. It's a three-minute time-lapse video of several central locations in the Hermit Kingdom's capitol, ostensibly to "provide a glimpse" into a "mysterious city" and - because it was produced in part by a North Korean tour company - to attract potential travelers to an "off the beaten path" destination.

As Amnesty UK points out, there is zero mention of North Korea's hideous human rights abuses (obviously, because that's not how you attract tourists):
People must look beyond the propaganda. North Korea is a country in a league of its own. There’s no nod here to the country’s brutal punishment system of prison camps, where innocent people face starvation, forced labour, misery and death.

Marvel at the aesthetics by all means, but then watch people talking about their life in the camps, where thousands upon thousands of people are still rotting away.
When we lived in South Korea, my husband and I briefly toyed with the idea of taking a tour there, because a tour is the only way you can go - the kind of meandering, go-where-the-wind-takes-you style of backpacking that we and our fellow expats adored is most definitely not allowed. The tours have a very specific itinerary that only takes visitors to "polished" places in the capitol, where you see statues, Starbucks, and famous buildings - but no unfinished roads, villages, or starving farmers. At the end of each day, you are dropped off at your hotel, from which you cannot leave - not even to grab a bite at a local noodle joint. You are escorted everywhere by a tour guide who spouts off propaganda. Despite its rigid nature, Westerners who have gone say it is a fascinating experience - including one of our college friends who has now gone twice. Looking at the price tag attached the tours was enough to dissuade us - particularly since, in addition to being able to spend a month in Japan on the same budget, the thought of giving so much money to support the ailing economy of a horrendous totalitarian regime left a bad taste in my mouth.

Despite the glossy picture they paint, North Korean travel agencies warn potential travelers in no uncertain terms to not try to start discussions with their tour guides about the country's repressive practices, human rights violations, or even poor conditions in the country. In addition to endangering you, such questions can also put the tour guides themselves at risk.

Frankly, I am surprised that no one who passed on the video noticed how few cars there were on the streets for a capitol city. Or how there were absolutely no foreigners. Or how short (and underfed) most North Koreans looked. But then again, I guess we personally have Seoul for comparison.

Chikungunya vaccine shows promise in early clinical trials

Friday, August 15, 2014

An experimental chikungunya vaccine developed by the NIH's National Institute of Allergy and Infectious Diseases (NIAID) has shown promise in early clinical trials:
In the newly reported trial, 23 healthy volunteers received three injections (two other volunteers received two injections) of vaccine at one of three different dosages (10, 20 or 40 micrograms) over a 20-week span. Antibody production was measured at multiple time points following each injection. Investigators detected chikungunya neutralizing antibodies in all volunteers following the second injection, with a significant boost of neutralizing antibodies seen following the third injection. Vaccine-induced antibodies persisted in all volunteers, even those who received the lowest dosage, for at least 11 months after the final vaccination, suggesting that the vaccine could provide durable protection against disease.

“The candidate vaccine prompted a robust immunological response in recipients and was very well tolerated,” noted VRC scientist Julie E. Ledgerwood, D.O., principal investigator of the trial. “Notably, the levels of neutralizing antibody produced in response to the experimental vaccine were comparable to those seen in two patients who had recovered from a chikungunya virus infection acquired elsewhere. This observation gives us additional confidence that this vaccine would provide as much protection as natural infection.”
This is great news, particularly considered that the vector-borne disease just arrived in the US this year.

Nifty Infographic of the Day: Child Marriage and Human Rights

Nifty Infographic of the Week: West African Ebola Outbreak (from Reuters)

Wednesday, August 13, 2014

Okay, so it's not really that nifty, but as Ebola (and frankly not much else) is in the news, this seemed like a fitting infographic to feature. Reuters has compiled a map of the outbreak, plus a line graph and a bar chart of Ebola cases and deaths by country (not including Nigeria, where the outbreak is still fairly new):

Investigation Uncovers Potential Medicare Fraud Involving HIV Meds

Thursday, August 7, 2014

I normally stick to blogging about global health topics, but since the U.S. is part of the globe (obviously), and HIV/AIDS medications are such an important topic in global health, it felt natural to comment on this story.

U.S. Health and Human services just published the results of an investigation into possible fraud involving ARVs (antiretrovirals, or HIV medications) that were paid for by Medicare's Part D. Medicare is America's health care program for the retired and disabled; Part D is the part of the program that covers prescription drugs. What makes this story unusual, however, is that it focuses on beneficiaries as the ones possibly committing fraud. From NPR:
  • In Detroit, a 77-year-old woman purportedly filled $33,500 worth of prescriptions for 10 different HIV medications. But there's no record she had HIV or that she had visited the doctors who wrote the scripts.
  • A 48-year-old in Miami went to 28 different pharmacies to pick up HIV drugs worth nearly $200,000, almost 10 times what average patients get in a year. The prescriptions were supposedly written by 16 health providers, an unusually high number.
  • And on a single day, a third patient received $17,500 of HIV drugs — and none the rest of the year. She got more than twice the recommended dose of five HIV drug ingredients.
The inspector general's report raises new questions about Medicare's stewardship of Part D. A ProPublica series last year showed that Medicare's lax oversight enabled doctors to prescribe massive quantities of inappropriate medications, wasted billions on needlessly expensive drugs and exposed the program to rampant fraud. Part D cost taxpayers about $65 billion in 2013.

Previous inspector general reports have criticized the way Medicare oversees doctors and pharmacies, but this one focuses on patients, who are not usually the focus of inquiries into fraud and abuse.

The investigation flagged 1,578 Medicare beneficiaries who received HIV medications worth $32 million in 2012.
Government-provided healthcare has been under intense scrutiny, and has come under a lot of fire, with the (sometimes botched) implementation of the Affordable Care Act over the last two years. Personally, I hope this doesn't generate too much negative publicity - after all, fraud will happen in programs this size, which is why these types of investigations are undertaken. I am at least encouraged by the fact that they published the results - unlike the CDC, whose laboratory safety slip-ups over the last decade only came to light when the anthrax incident blew up.