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Ed note: Today we welcome Junaid Nabi back to the blog. For more about Junaid, please see the bottom of this post.

Photo credit: James Motter

A couple of weeks ago, two black men entered the Philadelphia Starbucks store to meet a friend, and have a conversation, just like many of us usually do. Unlike many of us, however, they were arrested for trespassing – after minutes of taking their seats. A phone call – that lasted only 30 seconds – led to an arrest of these young individuals, and a national conversation on race relations in the United States in the ensuing days.

This reprehensible incident is an important reminder of how implicit racial bias – or in this case coffee shop racism – works. While this incident has been condemned widely, the service industry is not the only sector where this is a problem. Implicit racial biases are in fact important indicators of the broader negative perception of black people – which in clinical practice often leads to low-quality care, and harm.

How does this racial bias translate to harm in clinical practice?

In 2016, psychology scientists from University of Virginia demonstrated how racial bias lead to disparities in pain management. The investigators reported that black patients are systematically undertreated for pain compared to white patients.

They found that a significant number of white medical students and residents believed in false biological differences between white and black patients, such as “black people’s skin is thicker” and that “black people’s blood coagulates more quickly.” These findings exemplified how racial bias leads to less accurate treatment recommendations for black patients.

In another milestone report, the American Journal of Public Health revealed how implicit racial bias – even if unconscious – leads to reduced trust in the doctor-patient relationship, causes black patients to feel less respected by their doctors, and may contribute to racial disparities in healthcare.

Some of this implicit bias has a historical precedent. In a series of revealing articles last December, the Boston Globe’s Spotlight team illustrated how black patients were continuously discriminated against in the 1960s and 1970s. In fact, the report documented that such discrimination continues today – although it has taken new forms: today, it is more systematic and less individualistic.

What can academic medicine learn from such incidents?

As a physician-bioethicist, I am training to develop research protocols that are equitable and apply regardless of race of an individual. But after witnessing incidents where black people are routinely harassed, I believe it is a moral imperative to consider broader societal impositions on black individuals for any bioethical analysis – a feature that academic training programs have not addressed adequately.

It is a mistake to think that black patients’ exacting social environments do not affect their agency. Understanding – and addressing – how unfair social forces shape the health of black patients must start early in the medical training. One way to address this issue is to teach medical students to take a more thorough social history, that includes documenting instances of racial bias.

In 2014, a report from the Robert Wood Johnson Foundation emphasized: “Your health care depends on who you are. Race and ethnicity continue to influence a patient’s chance of receiving many specific health care procedures and treatments.”

To be sure, most healthcare providers are not actively discriminating against minority patients, but just like the Starbucks manager who called the cops on two innocent black men, the tendency to discriminate is often implicit. Unless one is intentional about their approach to patient care in minorities, it is far too easy to fall in the trap of casual racism.

Black communities already suffer from worse clinical outcomes. Black patients continue to have inadequate access to healthcare; black women are two to three times more likely to die from pregnancy- and childbirth-related complications than white women; and, mortality rate in black infants has not improved in recent years.

Many of these outcomes are driven by implicit bias, which continues to put undue stress on black patients. Implicit racial biases contribute to this perception.

It is important for academic medicine to recognize this issue. A conversation on how culture affects medical care is long overdue. Healthcare providers – and by extension students who are learning from them – are operating on a flawed understanding that societal racism (casual in many instances) does not affect medical care. As noted above, evidence suggests otherwise.

Healthcare providers are in a unique position to address racial bias. By making small intentional changes in routine clinical practice, such as focused empathy and a thorough social history, it is possible to elevate the quality of care for black patients and other minorities that routinely confront racial bias. These small initiatives may help alleviate some of the health disparities.

Equitable medical care can be great equalizer of the health conditions of minority patients.

About the author

Junaid Nabi, MD, MPH, physician, public health researcher, and a medical journalist. He is a Fellow in Bioethics at Harvard Medical School, Boston, and a New Voices Fellow at the Aspen Institute, Washington, D.C. Twitter: @JunaidNabiMD

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A story that’s been making the rounds recently is the impending water shortage in Cape Town. Multiple years of droughts have resulted in lower and lower water levels in the reservoirs that supply the city with water, and while there have been efforts to reduce consumption by residents of the city, the decrease hasn’t been enough to mitigate the effects of the drought. As a result, the mayor and city council have been warning citizens that there will soon be a day when the entire metro area will be without running water, and the taps will be turned off. This affects a huge number of people; the Cape Town metro area has about 3.7 million residents that will be impacted, about the same as the population of Connecticut, or the Seattle-Tacoma metro area.

Water levels in the Western Cape Water Supply System levels from Jan 2015 through Jan 2018

The city council has referred to the day that the taps will be turned off as “Day Zero,” and have set up a website to encourage residents to use less than 50 L per day. In comparison, a shower typically uses 2 gallons per minute, and so a 6 minute shower is the same as the entire amount of water someone in Cape Town has for all their activities. This includes cooking, bathing, laundry, drinking, etc. The USGS estimates that an average American uses around 80-100 gallons a day (300 – 380 L), between 6-8 times more than those in Cape Town.

The water shortage has important ramifications for research and healthcare. Simple things we take for granted – like being able to wash our hands before and after preparing food or going to the bathroom, now become more difficult with the lack of running water. In basic science research, this is further exacerbated by how studies can require caring for lab animals, or a steady supply of water in the event of a chemical injury. In Canada, the Canadian Centre for Occupational Health and Safety required that all emergency showers be able to pump 75 litres per minute for a minimum of 15 minutes, which would go through around three weeks of water in that time. Since researchers deal with highly corrosive chemicals in which minutes matter, it would be unsafe and unethical to continue to conduct research if you cannot provide a safe environment for your staff.

Researchers in Cape Town also do a lot of work in the areas of tuberculosis and HIV, and an interruption to the water supply, and the demands of going to line up daily for water, would have huge ramifications for the research being performed. As per an interview in Nature:

Linda-Gail Bekker, deputy director of the Desmond Tutu HIV Centre, says there would be consequences to interrupting her group’s efforts to provide reproductive health services to young women at high risk of teen pregnancy and HIV. Bekker worries that her staff will be unable to work if they must also wait in long lines each day to collect water for their households. “I plan to get ahold of the mayor’s office this week to see if we can figure something out,” she says.

Unless something drastic happens, the taps in Cape Town will be turned off on April 16, 2018. At this point, public health officials will have an essential job in preventing the spread of disease and ensuring residents have the education they need to minimize potential outbreaks. If they do suspect there is an outbreak happening, running samples/tests will require water, which means either prioritizing tests within the limited water available, or sending them elsewhere to be analyzed – further delaying the results. And all of this takes place with extreme water shortages in the background, which some suspect may lead to growing black market and associated problems.

While the water shortage is currently limited to Cape Town, we have seen droughts all over the world in recent years, albeit less severe in nature. However, unless we change our lifestyles to decrease our water consumption, or plan for a time when the taps don’t flow, we won’t be watching Cape Town, we’ll be living it.

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 PLOSBLOGS Network & Public Health Perspectives are pleased to present this guest post discussing a public health controversy that, because it occurred late in December of 2017, arguably did not receive the attention it deserves within the scientific community.  Our thanks to U.K. researchers Ben Kasstan, Meghann Gregg and Jonathan Kasstan for helping us rectify this omission with their informed opinions — representing the fields of anthropology, community development, maternal and reproductive health and linguistics (See their bios and affiliated institutions below.) Please note comments on this post will be moderated by PLOSBLOGS. As usual, your civil and constructive responses are welcome; please scroll below the post (and register if you haven’t previously) to offer your view on any of the issues raised. –Victoria Costello, PLOSBLOGS.

Claims that the Center for Disease Control and Prevention (CDC) had considered revising its language to suit socially-conservative tastes is a clear example of ‘verbal hygiene,’ meaning here an attempt to make language more acceptable by ‘cleaning’ it up. The recent CDC language controversy must be considered as part of a broader politicisation of public health services used by women and minority groups in the US, which has international implications given the influential work of the CDC in global health governance.

Politics of public health language

On 15 December 2017 The Washington Post reported that the US Department of Health and Human Services, which includes the CDC, were being prevented from using specific terms in documents by the Trump administration. These documents would apparently be circulated at the federal government level in relation to the Trump administration’s 2018 budget, and the terms in question included:

  • Foetus
  • Transgender
  • Evidence-based
  • Science-based
  • Vulnerable
  • Entitlement
  • Diversity

The CDC Director, Brenda Fitzgerald, flatly denied this report in a series of Tweets and stated ‘there are no banned words at CDC.’ While the above terms may not have actually been banned, the CDC may have been advised to ‘reconsider’ the language it uses when engaging with politicians and policy-makers (as reported in The Guardian). Some of these politicians would include socially-conservative Republicans who make economic decisions (because Republicans hold the majority of seats in the Senate and the House of Representatives), so it is obvious why the CDC as a government-funded body would need to appeal to their tastes. It is in the public interest to highlight that some of these individuals maintain oppressive positions on women’s sexual and reproductive health and rights, especially when it comes to restrictive access to abortion care. It is no surprise then that accommodating socially conservative values within public health language has resulted in ‘verbal hygiene.’ While verbal hygiene might be practiced for different reasons, in the context of sexual and reproductive health and rights it reflects conflicting positions on abortion in the US. Our concern is the implications of verbal hygiene for sexual and reproductive health and rights, which are increasingly under threat in the US and internationally.

The suggestion that the CDC should revise (or conceal) its language is serious because it would shape a public health service that is in danger of infringing on human rights. It would also legitimise the damaging actions that have been implemented in the US and internationally by the Trump administration in the context of women’s health and welfare, such as the decision to reinstate and expand the New Mexico Policy (which we go on to discuss).

Public health and language share a commonality in the way they are political and politicised, and the interaction of which can be seen clearly in restrictions enforced over sexual and reproductive health and rights.

Let us take the term ‘foetus’ as one example, and let us imagine that the CDC acted upon cautions to instead use ‘unborn child’ in documents submitted to politicians and policy-makers. Many people who are not active in sexual and reproductive health and rights might not notice the consequences of using a term like ‘unborn child.’ It might even be interpreted to some as a pragmatic step to obtain necessary funding for the CDC’s research into the Zika virus, which is known to cause birth defects (and has primarily affected areas with dangerously restrictive abortion legislations). Yet using the term ‘unborn child’ in CDC outputs would actually tread further down a dangerous path for women’s health and rights.

Using the term ‘unborn child’ in place of ‘foetus’ is not a synonym: it carries a very different linguistic value. Adopting (or suggesting as an alternative) ‘unborn child’ would be part of a systematic, intentional and politictised attempt to restrict access to abortion care and undermine the sexual and reproductive health and rights of women. The term ‘unborn child’ is common in anti-abortion discourse, both in the US and the UK, and its use shifts the emphasis away from the welfare, health and rights of a pregnant women.

Women in certain US states, for instance, are compelled to undergo ultrasound screening in order to access abortion care as part of a disgraceful attempt to dissuade women from making sexual and reproductive health decisions under the pretense of ‘informed consent.’ Texas recently attempted to enforce laws that would see aborted foetal tissues and remains treated as deceased people and legally entitled to a funeral (e.g. burial or cremation), which would bestow the foetus with social personhood and political rights.

None of these interventions are informed by evidence-based and science-based research that might benefit women who need to access abortion care, but only to serve the political interests of the anti-abortion lobby.

Earlier in January 2017 the President of the United States made the regrettable decision to reinstate and widen the Mexico City Policy (also termed ‘global gag rule’), which withholds funding from NGOs in low- and middle-income countries that actively perform or promote abortion care as part of sexual and reproductive health and rights programmes. Restricting access to safe abortion care does not deter women from needing abortions, it only makes women vulnerable by forcing them to seek out unsafe abortions at great risk to their lives and health. Reducing abortion rates is complex, and requires promoting gender equity while protecting reproductive rights by giving women the power to decide the terms of their pregnancies. The World Health Organization, for instance, estimates that up to twenty million women will have to resort to unsafe abortions, and almost fifty thousand of those women will die as a result of complications. So, if CDC documents frame the foetus as an ‘unborn child’, it supports, like the Mexico City Policy, a discourse and a culture that gives rights to a foetus, while taking away women’s reproductive rights.

We can consider any attempt to avoid using the term ‘transgender in CDC documents within a deeper history of how people identifying as (or identified as) LGBT were stigmatised through the politicisation of public health language. The emergence of the HIV/AIDS epidemic in the 1980s brought tremors to the CDC at a time when healthcare professionals, policy-makers, and politicians struggled to grasp the enormity of a disease that had never been encountered before. Public health ‘facts’ made HIV/AIDS appear as an exclusively ‘gay disease’ in the early 1980s. Yet these ‘facts’ were not actually built on evidence but on misinformation, and institutionalised homophobia. Recognising the specific and diverse health needs of transgender and LGBT people entails recognising them as people, and this is achieved through language.

Our position on the politicisation of public health language is clear and unequivocal. Public health bodies such as the CDC are mandated to meet the needs of all people, in all their diversity. Access to quality healthcare services is the entitlement of everybody, and public health language is the basic way through which inequalities and inequities are made visible and addressed. The type of socially-conservative language ideology that is being promoted by the Trump administration serves only to intentionally erase realities that stand in opposition to Republican worldviews and political agendas. Everybody can use language to support and shape inclusive cultures, and we can all more actively participate in creating the kind of world we want by remaining mindful of how powerful language is.

Restoring public confidence: Our recommendations

In light of recent events we recommend the following actions to restore international confidence and credibility in the important work of the CDC and its public health outputs, which may have been undermined by the language controversy:

  1. The CDC should unequivocally and transparently state whether it was advised to review or reconsider the language it uses, and to clarify whether it intends to act accordingly.
  2. If the CDC confirms it will be reconsidering the language used in documents submitted to politicians and policy-makers then this should be made public knowledge.
  • The CDC should conduct a review into the possibly unintended consequences of revising the specific language used in documents that are submitted to politicians and policy-makers.
  • If said language is reconsidered, then the CDC should make it clear that public health bodies in low- and middle-income countries should not adopt the revisions in kind, particularly at a time when global sexual and reproductive rights are under attack.
  1. The CDC should meet with leading NGOs and stakeholder groups to offer reassurance that public health policies and guidelines will continue to be designed in consultation with the intended beneficiaries, especially those groups concerned with gender, equality, and diversity.
  2. The CDC will continue to ensure that its work is grounded in research- and science-based evidence, including qualitative research, to ensure its policies are informed by a full range of academic interfaces.

The views expressed in this post represent the perspective of its authors, and are not necessarily shared by PLOS.

Ben Kasstan is a Research Fellow in the Department of Anthropology at the University of Sussex (UK). Ben combines research and activism in all areas of sexual and reproductive health and rights, and has specific research interests in family health and family-making dynamics among ethnic and religious minority groups. B.kasstan@sussex.ac.uk

Meghann Gregg is a PhD Researcher at the London School of Hygiene and Tropical Medicine. Her work encompasses community development and health research, with current projects focussing on improving maternal health with complexity theory and participatory research. Meghann.gregg@lshtm.ac.uk

Jonathan Kasstan is a Leverhulme Early Career Fellow in the Department of Linguistics at Queen Mary University of London (UK). He holds a PhD from the University of Kent, and an MPhil from the University of Cambridge. J.kasstan@qmul.ac.uk

This post is a revised version of the authors’ response that originally featured as part of the Somatosphere collection, ‘Language, public health, and #CDC7words.’

 

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Last week, I saw someone ask a very simple question on Facebook:

“If you could give one piece of advice to those starting undergrad next week, what would it be?”

The comments were interesting. Several people mentioned how grades, while positioned as the be-all and end-all during undergrad, are not a reflection of your worth or ability as a person. The advice that grades are important, so work hard and do your best, but do not let them dictate how you see yourself, is very good and definitely something people need to hear. On the other hand, this is easier said than done, as for that first position out of undergrad, grades are key to getting your application out of the pile (along with relevant experience/networking). Especially in research heavy fields, success begets success, and the better your grades are, the more likely you are to win awards and scholarships, which then gives you a better chance to win subsequent awards and scholarships. But I don’t think that’s the best advice you can get.

Someone else mentioned that you should spend your time networking, and diversify your viewpoints to encompass ideas and values beyond those that you’re familiar with. There’s definite value in this too. For some, going to college or university is the first time they will be exposed to people outside of their community, especially those who are going to pursue education in a new city, state, or country. The opportunity to broaden your horizons and learn from others, as well as respect and appreciate different viewpoints and value structures, is one that will help shape you as a person. Being able to look at issues from different perspectives, and to appreciate the value of these diverse outlooks will help develop your skills and make you a more well-rounded person. But this isn’t the most important advice I’d give someone entering or in undergrad.

For me though, the best advice is that there is no fixed path to success. At the start of undergrad, many first years will have a rigid definition of what they want to do upon graduating: gain admission to medical or law school, getting a job with a top company upon graduation, or embark on graduate education in a specific field. However, in being laser-focused on a singular goal, you risk missing out on opportunities that will enrich your experience and provide you with new and valuable experiences. Seeking out additional experiences that come your way that seem interesting and fun at the time, and stepping off the beaten path to engage in those activities, can be valuable and helpful for developing your perspective. Sometimes those experiences with be positive and incredibly fun, and sometimes, those experiences will be the opposite. However, every experience, both positive and negative, is one you can grow from.

If you continue to do that which you enjoy and love and are passionate about, you’ll have the energy and motivation to push through the tough parts. And if you feel a sense of purpose and a belief in what you’re doing, then you’ll be motivated to go the extra mile and make it your own. The Canadian astronaut Chris Hadfield was asked about pursuing a career as an astronaut, and gave the following answer. It’s one that has stuck with me, and provides another perspective on this same issue.

Decide in your heart of hearts what really excites and challenges you, and start moving your life in that direction. Every decision you make, from what you eat to what you do with your time tonight, turns you into who you are tomorrow, and the day after that. Look at who you want to be, and start sculpting yourself into that person. You may not get exactly where you thought you’d be, but you will be doing things that suit you in a profession you believe in. Don’t let life randomly kick you into the adult you don’t want to become. – Chris Hadfield

Enjoy your undergrad. Enjoy every experience that comes your way, and seize every opportunity. But if, on your journey, you end up taking a path you didn’t expect at the start, don’t become disheartened. There are many paths that lead to your destination, and if you are doing that which you’re passionate about and interested in, every destination represents success.

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Editorial note: This piece was co-written by Atif Kukaswadia, PhD, and Ary Maharaj, M.Ed. Atif is a writer for the Public Health Perspectives blog on the PLOS network, and Ary is a writer for Silver Seven, an SBNation blog about the Ottawa Senators hockey team. This piece is being cross-published on both platforms. Enjoy!

CHALLENGES

The environment within NHL clubs are relatively controlled, with most players together a majority of the time — from on-ice, rooming together on the road, and flying with charter planes. Thus, when one player contracts the illness, it’s relatively hard to contain it other than by separating a player out completely. But with mumps having a long incubation period of about 16 to 18 days, although it can be as short as 12 to as long as 25 days (CDC), detecting that an illness is in fact the mumps can be difficult, and by that point, it may already be too late. However, for the public, this controlled environment means that what happens in the NHL may not necessarily pose greater risk. When things go wrong in sports, we generally blame it on the referees, and here, yet again, we can blame referees for increasing the public risk of an NHL mumps outbreak (sort of kidding). The ~66 referees employed by the NHL fly commercially like the rest of the public, waiting around airport terminals and going in-and-out of rinks with the public, potentially leading to increased risk.

The NHL also has to worry about the administrative and logistical challenge of handling the public health of multiple sports leagues, as demonstrated by the 2017 outbreak starting in October 2016 when three members of the New Jersey Devils’ minor league affiliate (AHL) in Albany, New York contracted the illness. When players are traded to other teams, or players are called up for a game and sent back down, they may carry bacteria from their previous environment.

The fact that the players diagnosed with the mumps in 2014 and 2017 were born in four different countries (Finland, Sweden, Canada, and the United States) speaks to the internationalization of the NHL and also the complex challenge it presents from a public health perspective. These players, given their varied childhood environments, may have received anywhere from 0 – 3 doses of a mumps-containing vaccine as different countries have varying requirements on mandating it.

With a vaccine-preventable disease, there are several angles that need to be considered. First and foremost is that of the players. One of the key aspects of the Code of Medical Ethics is that of patient autonomy – the idea that patients are allowed to make their own decisions with regards to treatment. From the American Medical Association’s website

“Respect for patient autonomy is central to professional ethics and physicians should involve patients in health care decisions commensurate with the patient’s decision-making capacity. Even when a medical condition or disorder impairs a patient’s decision-making capacity, the patient may still be able to participate in some aspects of decision making.”

Players were therefore allowed to make their own decisions, knowing the risks associated. Ryan Suter, who missed games with the mumps in the 2014-15 season had this to say:

“Everybody got the shots on our team, and I’m like ‘I don’t need to get the shot. I think I’ll be all right. I wash my hands a lot. I’m a clean guy,’” he said. “So everybody got it except for me. And of course, two weeks ago I get the mumps.”

However, how do we ensure players have “true” autonomy? Educating players is a fine balance between explaining the risks to them of not being vaccinated, and ensuring that they are not coerced into getting the vaccination, fearing reprisals from management or lost games (which could severely impact their career prospects, especially marginal/bubble players).

For owners, this becomes trickier. With players both being raised in and playing in leagues throughout the world, owners have to consider whether they want the same standard being applied across the board. For those who play in international competitions or are signed/drafted from international leagues, should they be encouraged to get their immunity checked as part of their physical evaluation? For owners, preventing their players from missing time, especially their star players, is a priority (as is evident from their hesitation to bring players to the Olympics). However, they may be reticent to encourage players to get vaccinated, risking repercussions from both the public and the players association.

The final angle is that of the league. While on some level this is synonymous with the owners, any change would have to be league-wide in order to ensure consistency and effective herd immunity among all players. The league has made changes that respect autonomy but also protect players, with issues such as visors being mandatory for newer players, but not for existing players, as well as the concussion protocol. While some may argue these do not go far enough, they show the league is willing and able to take action. After losing high profile players to (preventable) diseases, can the league afford to not take a stand?

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Editorial note: This piece was co-written by Atif Kukaswadia, PhD, and Ary Maharaj, M.Ed. Atif is a writer for the Public Health Perspectives blog on the PLOS network, and Ary is a writer for Silver Seven, an SBNation blog about the Ottawa Senators hockey team. This piece is being cross-published on both platforms. Enjoy!

INTRODUCTION

When we think of places for disease outbreaks, a few examples quickly come to mind: classrooms, college dorms, crowded trains. Another suggestion? The confines of the National Hockey League, where players are surrounded by literal blood, sweat, and tears. When you watch a hockey game, you’ll routinely see players spitting, swapping saliva through the sharing of water bottles, sweating — either through playing the game, using the same towel to dry themselves off, or rubbing their sweaty glove in another player’s face during a scrum. Add to this the intense travel and training schedule, along with the close quarters players are in between games, and this means that, among other things, the NHL is a breeding grounds for illness, even rare ones that do not generally permeate the public sphere.

Mumps would be far down the list of possibilities at first glance. Generally recognized as a childhood illness, mumps all but disappeared in the 1970s after Maurice Hilleman developed a single vaccine for measles, mumps, and rubella (MMR) after each of the individual vaccines became available in 1963, 1967, and 1969 respectively. Shortly after, vaccination schedules for the MMR vaccine were implemented by the many public health agencies, including in Canada and the United States, with the initial recommendation of a single dose for children.

There has been a significant impact on public health since the implementation of the MMR vaccine. Quantitatively, case reports of measles, mumps, and rubella dramatically declined throughout three decades of the vaccine’s availability. Using Canada as an example, national cases went from over 33,000 cases in 1951-55 to <1% of that in 2011-13. Although this was already a huge success, small outbreaks still popped up semi-regularly, prompting public health agencies to implement the universal recommendation of two doses of the MMR vaccine in children since the mid-1990s.

MUMPS IN THE NHL

The NHL has had two recent mumps-related encounters: October – December 2014, and January – March 2017; the former being much bigger than the latter. As seen in this fantastic visualization from Global News, the 2014 cases started with three teams: the St. Louis Blues, Minnesota Wild, and Anaheim Ducks. By the holiday season, 15 players from four teams were diagnosed, leading NHL teams to postpone their annual holiday visits to hospitals out of fear that an undiagnosed player could introduce the disease into the hospital. When it was all said and done, 24 players from 5 teams showed symptoms or were diagnosed with the mumps – a relatively large percentage given that there were only 584 cases of mumps reported in the U.S. in 2013. Earlier this year, 8 players from 2 teams were infected — with the Minnesota Wild appearing again. The effect of this was severe, with Adam Larsson describing it as:

“It came right away for me. My face started growing and the fever came at night. Those four days were probably the worst days in my life so far. It was really bad at one point. I couldn’t eat or anything. I’m glad to be back. I just have to work my energy level up a little bit to where I can play.”

The amount of games missed by players have varied: some, like Ducks star Corey Perry, were briefly hospitalized; Wild defenseman Keith Ballard missed 8 games, but teammate Ryan Suter only missed two; meanwhile, New Jersey Devils forward Travis Zajac was over the illness by the time the team had confirmed that he actually had mumps. As this fan-run database shows, when most NHL teams are worried about players missing half a season due to concussions, tearing of tendons, and a variety of gruesome upper and lower body injuries, illnesses like the mumps aren’t the primary concern of players and their coaches. That being said, a highly contagious illness like the mumps is a serious issue and has consequences that vary from disrupting a player or team’s game-day routine to missing ~3-4 weeks, losing weight, and needing time to recover to get back to 100% — a hard feat in an already-demanding 82 game schedule. Hockey, like many team sports, often run into trouble with players not wanting to admit that they’re injured, due to fear of lost playing time.

SO WHY THE SUDDEN OUTBREAK?

One theory has to do with the age of the players who contracted the illness: all of them were born between 1980 and 1994. Experts who specialize in vaccinations know this as the ‘lost cohort’ of MMR: people born between 1970 and 1994 represent a group with only partial protection against the mumps and are most at-risk. Between 1970 and the mid-90s, a single shot of the mumps vaccine was common, and is estimated to protect 64-80% of people. People belonging to this group lost the immunity they would have developed through childhood exposure to mumps and getting “over it” in the wild like the previous generation. When public health officials noticed that immunity faded with time, they introduced the MMR booster program in the mid-90s for children between the ages of 18 months and 4 years old, and two doses became the standard. This ‘lost generation’ refers to people currently between the ages of 23 and 37, and can explain recent mumps outbreaks in Toronto and the United Kingdom. What’s the average age of an NHL player? 27.3. Thus, despite being super-fit and vaccinated once, our NHL player sample is uniquely vulnerable — not just because of their environment, but also due to their fading ‘one-shot’ immunity.

Adding to this is the idea of herd immunity. When a critical mass of people are vaccinated and unable to transmit a disease, this protects the unvaccinated e.g., those with compromised immune systems, the elderly or very young, and those who cannot take the vaccine due to previous adverse reactions. However, as we mentioned above, some NHL players would have lost their immunity over time, and thus can no longer count on the benefits of herd immunity to protect them. Add to this how they share confined spaces and equipment with peers, and you have an environment where diseases can be transmitted quickly.

WHAT HAS THE LEAGUE BEEN DOING

As noted at the beginning of this piece, given the warm, moist, and relatively gross environment surrounding an NHL player, there’s only so much you can do in terms of prevention. What has the league been doing?

The NHL and NHL Players Association (NHLPA) have a joint health and safety committee that work with teams when issues like this come up and issue league-wide memos, which it did twice during the 2014 outbreak. For contagious illnesses like the mumps, this is often through education, such as emails to players with the symptoms and warning signs, setting up voluntary vaccination appointments, and implementing best practices with respect to sanitizing equipment, such as water bottles, jerseys, and dressing room stalls. Interestingly, nothing is mandated, with a statement from the committee encouraging ‘booster shots’ of the vaccine and recommended changes to “bench and locker room behaviour” but noting that decisions for mumps and any other diseases are made at the club level [referring to the NHL’s 31 franchises]. Some clubs are more proactive than others. In Buffalo, as soon as a player shows any sign of sickness, players have to drink from their own water bottles, their equipment is marked, and hospital-strength laundry detergent is used to wash their uniform separately. In Detroit, a portable room sanitizer called the Fresh Gear ActivO has been ordered. The machine is designed to kill mould, viruses, and bacteria using ozone and is mainly used in cases of fire damage, but the Wings use it in the dressing room after every game.

Come back Wednesday for the second part of this series, describing the challenges in preventing mumps outbreaks in the NHL!

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Today, we’re welcoming Senator Jane Cordy, a Senator from Dartmouth, Nova Scotia and Mrs. Lanre Tunji-Ajayi, President & Executive Director of the Sickle Cell Disease Association of Canada to the blog to discuss their initiative to make June 19th official Sickle Cell Awareness Day in Canada. Part one of the interview focused on their desire to create a Sickle Cell Awareness Day, and part two focuses on how this moves through the political process and the impact they hope to have.

Why a day for awareness?

LTA: As you may be aware of, the Awareness Day Bill is the key and the foundation to improving the lot of many with SCD (to enact appropriate policies, laws and programs) as well as reduce the number of new SCD births. By supporting UN and WHO’s mandate in raising awareness of the disease on June 19th—we are exposing many more to the disease- general community (encouraging SCT testing); care providers (many Canadians doctors have limited knowledge of the disease and as such brand many patients seeking treatment for pain crises as drug seekers) and the law makers (to ensure we have laws and policies enacted that will support suitable care and treatment including research into SCD).

A Child Prodigy, a Painful Disease, and a Life-Changing Treatment | National Geographic - YouTube

For the benefit of those readers who are not familiar with the Canadian Parliamentary process, can you let us know how a bill becomes law in Canada, and what it means that the National Sickle Cell Awareness Day Act is in its third reading?

SJC: In the Canadian Parliamentary process, a bill can originate in either house of parliament. A bill originating in the House of Commons begins with a ‘C’ (example: C-208) and a bill originating in the Senate begins with an ‘S’ such as S-211.

A bill will go through several stages before passing into law. It is first introduced, then debated for a first time at what is called ‘Second Reading’. After debate has concluded at Second Reading it then moves on to be studied by a committee. When a committee has finished study of the bill it is then reported back to the chamber at which point it will then be debated again at what is called ‘Third Reading’. Following third reading of the bill, there is a vote on the bill and if the bill passes, it will then move on to the other house of parliament where it will go through the same process again. Once a bill has passed both houses of parliament in the same form, it will then received ‘Royal Assent’ and become law.

This is a simplified explanation of how a bill becomes law. There are many things that can happen to a bill throughout the parliamentary process, such as amendments, which I didn’t get into here but if your readers would like to know a bit more about how a bill becomes a law I have included a handy link.

As for our National Sickle Cell Awareness Day Bill (Bill S-211), it has passed unanimously all the stages in the Senate without amendments. It has also passed unanimously second reading and committee study in the House of Commons. Currently, the bill is scheduled to continue its third reading in September. If the House of Commons votes to accept the bill without amendments, after third reading concludes, the bill will receive royal assent and become law.

Our Story: Living with and Managing Sickle Cell Disease (Nicholas H.) - YouTube

What is your hope for the Act?

SJC: Sickle cell disease is the most common genetic disease in the world. It is important that we have discussions about sickle cell disease so that Canadians and the medical community are more aware of sickle cell.

In order for a child to be born with sickle cell, both parents must have the sickle cell trait. The concern is that many people who carry the trait are not aware that they are carriers. We need more genetic testing so that adults can make informed choices if they know that they and their partner are both carriers of the trait.

We also need new born screening which is a simple blood test so that if a child is born with sickle cell disease treatment can begin immediately. Too many children are not diagnosed and this creates challenges when they go to emergency departments because of severe pain and are given Tylenol and sent home. Knowledge creates better opportunities for families and medical personnel to provide early interventions and treatment.

I am hopeful that the passing of this bill will increase the awareness of sickle cell disease and will encourage the Federal Government to support further research for a better understanding of the disease, which treatments work best and hopefully, one day, to find a cure.

I would also advocate a national strategy for sickle cell disease which can happen after research.

LTA: As mentioned above, the bill is a catalyst that will open the door to a national strategy for SCD-National Strategy. A national strategy will reduce the health care cost associated with sickle cell disease and improve the quality of care received by the approximately 5 000 individuals living with the disease in Canada. As such, our Medical Advisory Board is willing to lend technical expertise to the federal, provincial and the territorial ministries of health in moving forward with the planning and implementation of a national strategy and has provided an extensive report on the need for this strategy based on SCDAC/AAFC’s three “Asks” identified in this document.

SCDAC/AAFC is seeking federal leadership and funding in cooperation with the provinces and territories for the three key asks to bring about:

  • Implementation of universal newborn screening program for haemoglobin disorder in all provinces and territories
  • Establishment of a Canadian network of Comprehensive treatment centres, and
  • Creation of a national patient registry.

Given that Senators operate at a Federal level, is there a partnership/plan to engage provincial partners to help promote this day to ensure that more people are aware of this?

SJC: Of course it is extremely important that there is a partnership between the Federal Government and the Provinces/Territories to create awareness of Sickle Cell Disease across the country. Six provinces and one territory currently provide newborn screening to detect Sickle Cell. I am pleased that my province of Nova Scotia is among them. This information is invaluable if we are to make a difference. If Bill S-211 passes I will be contacting the Provincial Health Ministers to encourage them to promote Sickle Cell Awareness Day. We have been pleased with the support Bill S-211 has received in the Senate and in the House of Commons.

LTA: Yes, Nova Scotia for instance has declared June 19 as World SCD. We believe that once the Bill passes more provinces will follow suit. Never the less, once it is law at the Federal level, we believe it will be law in every province. With our member organizations in almost all provinces, we will be able to progressively engage the provincial partners

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Today, we’re welcoming Senator Jane Cordy, a Senator from Dartmouth, Nova Scotia and Mrs. Lanre Tunji-Ajayi, President & Executive Director of the Sickle Cell Disease Association of Canada to the blog to discuss their initiative to make June 19th official Sickle Cell Awareness Day in Canada. Part one of the interview focuses on their desire to create a Sickle Cell Awareness Day, and part two will focus on how this moves through the political process and the impact they hope to have.

 

Hi and welcome to the blog. Could you let the readers know a little about yourselves?

Senator Jane Cordy: Hello, my name is Jane Cordy, I am a Senator from Dartmouth, Nova Scotia, Canada. I am a former elementary school teacher. I was named to the Senate of Canada by former Prime Minister, The Right Honourable Jean Chrétien in June of 2000. I sit in the Senate as a member of the Independent Senate Liberal caucus. Since joining the senate I have had a focus on issues related to mental health, multiple sclerosis, sickle cell disease, seniors and aging, education and children.

Mrs. Lanre Tunji-Ajayi: Born as the eldest child in a family with sickle cell disease (SCD), I became an advocate and caregiver for my siblings at a tender age- I remembered dressing my brother warmly so as not to catch cold when I could not have been more than 7 years old and he was about 5 years old.

Watching my parents doted on my siblings with SCD, I quickly learnt the reasons for their actions and followed their footsteps in reducing environment induced pain crises for my siblings—especially my brother who was the closest in age to me. I would ask about his protein intake and demand that he ate beans three times a week. He must also take the bus from school rather than walk home—you must avoid stress and its resulting pain crises, I found myself advising quite often.

It was not until 5 years after my brother Sunday Afolabi succumbed to the complications of SCD in 1999 that I decided to do something about the disease especially within the At-Risk communities in Canada. In 2005, armed with the conviction that raising awareness around testing for sickle cell carrier status  is the place to start if we must reduce the number of unplanned for SCD births; the Sickle Cell Awareness Group of Ontario was incorporated. In 2012, along with other national advocates from across the country, we established the Sickle Cell Disease Association of Canada. With about 28 years of experience in Management, I am pleased to continue to support both the Ontario and the national associations in various capacities.

What is Sickle Cell Anemia?

LTA: Sickle Cell Disease (also called Sickle Cell Anemia) is a group of inherited red blood cell disorders affecting production of hemoglobin. The genes producing abnormal hemoglobin are inherited from parents, who may be ‘carriers’ of the sickle cell gene or ‘trait’ or may have sickle cell disease themselves.

Hemoglobin is the part of the red blood cell that carries oxygen around the body and keeps vital organs working. In Sickle Cell Disease, the abnormal Hemoglobin (HbS) is not able to work properly, and it gets destroyed quickly, leading to anemia. The red blood cells also becomes stiff and block up the blood vessels in the body, causing pain and damage

Canadians affected are mostly those whose ancestors are from sub-Saharan Africa and the Maghrib, Asia (including the Middle-East, Arab Peninsula, India), the Americas and Southern Europe (including southern Italy and Sicily, Greece, Turkey). With Canada being multicultural and very diverse, these ethnicities represent today’s Canadians. Furthermore, with the increasing cross-procreation among the different ethnic groups in Canada, it suffices to say that SCD is not confined to some selected ethnic groups but will, can and is affecting all Canadians.

Currently there is no patient registry for SCD and as such the true epidemiology including true burden of the disease is unknown, however, our estimates of the affected is about 5000 Canadians and over 100-120 children born with the condition annually. There will continue to be further increase in the number of the affected and new births due to the current international and cross- provincial migration patterns.  We have immigrants from all over the world and it is important to support the health issues of the new comers to our country. SCDAC has developed both at the national and provincial levels, SCD strategies that will reduce health care costs related to SCD while ensuring optimal contributions of the affected to our economy. It is also high time we treat testing for sickle cell trait (SCT) as a public health issue especially with SCT being asymptomatic and the number of affected within some ethnic communities as high as 25%

According to the World Health Organization (WHO) estimates, sickle-cell anemia affects nearly 100 million people throughout the world, with over 300 000 children born every year with the condition.  Tragically, the majority of these individuals will die in childhood due to lack of basic care, and those who survive into adulthood are too often face a life of chronic disability and premature death unless disease-modifying therapy can be provided.   The WHO therefore urges countries affected by SCD to establish health programs at the national level and promote access to medical services for people affected by the disease. We are witnessing a continued increase in the number of the affected yearly and Canada must shift its focus to SCD.

Senator Jane Cordy on Bill S-211: National Sickle Cell Awareness Day Act - YouTube

How did you both meet and why did you decide to pursue the National Sickle Cell Awareness Day Act?

SJC: My journey with sickle cell disease began about two and a half years ago when MP and now Minister Dr. Kirsty Duncan hosted a breakfast on Parliament Hill to introduce senators and MPs to sickle cell. At that meeting I met courageous, wonderful people who came to Ottawa to tell their stories about sickle cell and how it affected them and their loved ones. I also met doctors who spoke about the need for the early diagnosis and treatment of sickle cell disease.

Lanre was also at that meeting. Afterwards I spoke with her and told her that I would be willing to help out. Fortunately, Lanre accepted my offer and this led me to introduced Bill S-211, an act that would establish June 19th as National Sickle Cell Awareness Day in Canada.

I am honoured to work with Lanre and the other wonderful advocates like her who are passionate about improving the lives of Canadians who have sickle cell disease.

LTA: I met Senator Cordy in 2013 at the breakfast event supported by the Minister Kirsty Duncan as a part of the SCDAC’s advocacy and education day on the Parliament Hill. It was the first time that sickle cell disease education and advocacy day would be held on the Hill and it provided the delegates the opportunity to provide the necessary awareness and education to the law makers. The delegates’ meetings with the MPs and Senators after the breakfast event helped to expose the limited SCD knowledge on the Hill. Quickly we realized that with the limited knowledge of the disease on the Hill, asking for their support may not be realistic.

Two years after (2015), and with the help of Minister Duncan, we asked Senator Cordy to introduce a Senate Bill for National Awareness Day in Canada. We believe that policy makers must have a good knowledge of the disease including the challenges and complications imposed by SCD to the patients and their care givers; and the economic and financial impacts on patients, caregivers and our health system if there must be policies to advance SCD Education, Research, Care and Treatments.

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In healthcare we’re data rich, but information poor. There are lots of surveys, studies, and healthcare data available to us through different programs, but very rarely do we see it presented in way that is clear and understandable to an audience that isn’t familiar with the subject matter. I’m going to highlight three of my favourite visualizations today – be sure to share your favourites in the comments below or on Twitter!

The drug overdose epidemic is one that has been growing rapidly over the past few years, with wide geographic variation. Rates at the state level vary dramatically, with ~ 6.9 deaths per 100,000 population in Nebraska (the lowest in the country). Meanwhile, rates in West Virginia were almost 6 times higher, with 41.5 deaths per 100,000 in 2015; a shocking 17% increase from the previous year (click the image below to see where your state ranks).

Number and age-adjusted rates of drug overdose deaths by state, US 2015 (graphic from the CDC website)

Last week the NY Times presented the drug overdose epidemic in a way that was incredible insightful and profoundly effective. In a piece titled “You Draw It: Just How Bad Is the Drug Overdose Epidemic?“, you were given historic data and were asked to plot forward how many Americans have died every year from car accidents, gun deaths, and other major causes of death. From this, you can project forward and see how your estimates compare to what is actually being observed.

You Draw It: Just How Bad Is the Drug Overdose Epidemic? (click image to go to website)

What I really liked about this was how the website was set up to engage with health data in a way that is very different from static graphs and visualizations, and forced you to think about what you think it happening, then presented you with data that either corroborated or went against what you expected. For example, I was surprised to see how high deaths from car accidents were, but that could be for a multitude of factors.

Another really good example of visualizing data is the Census 2016 Demographic DJ by the CBC. This was a really innovative way to see how a reader fits into Canada’s demographic landscape, in terms of how many people are older than you, how the number of people in your age group changed since 2011, and other demographic details. As more information is released, they will continue to build out other visualizations that convey this information even more effectively.

Census 2016 Demographic DJ: Where do you fit in Canada’s 35 million? (click image to use)

Now, healthcare and public health are the obvious focus of this blog, but one visualization that I absolutely love that uses visuals incredibly effectively to lead you through a story is this one on The Pudding: Are Pop Lyrics Getting More Repetitive?

Are Pop Lyrics Getting More Repetitive? (click image to follow)

This image takes a relatively common theory – that modern songs are more repetitive than older songs, and tests it with data. However, the way they do this is by using an algorithm called the Lempel-Ziv algorithm. The piece opens with a description of how the algorithm works – showing you as you scroll through how duplicated words are eliminated. It highlights in a very easy to understand fashion how a very complicated algorithm works, and the effect of it. For example, it shows how you could compress the entirety of Around the World by Daft Punk into 61 characters from 2,610. But it then breaks things down even further, looking at trends over time, how this is driven by certain artists, and finally how much variation there is by individual artists depending on the song. I highly recommend taking 3-5 minutes and going through it.

Public health, and medicine in general, can learn a lot from how other industries convey important and complicated information. Even when the data isn’t related to health information, we can still learn from it to make our findings engaging to an audience who may not be immersed in the subject matter, but would like to know more if it is presented in a compelling and engaging way. Other industries are doing this already; we just need to learn from them and tailor our content to a public health audience.

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