Public health agencies should prioritize public health based on evidence, not fear

The Editorial: The complexity of health requires an expansion of the areas covered by public health agencies

Ed note: This post comes to us from our PLOS Blogs friend Dr Travis Saunders. Travis Saunders has a PhD in Human Kinetics at the University of Ottawa. His research focuses on the health impact of physical activity and sedentary behaviour. He blogs regularly about both on his blog, Obesity Panacea.

I came across an editorial in Maclean’s this weekend which was both surprising and disappointing (and at times condescending). The gist of the editorial was that public health agencies like the World Health Organization (WHO), Centers for Disease Control and Prevention, and Public Health Agency of Canada, should focus on infectious diseases (Ebola, smallpox, SARS, etc), rather than chronic diseases (heart disease, diabetes, cancer, etc).

I like Maclean’s, and read it regularly. In fact, I was disappointed specifically because their science and medical coverage is so consistently excellent. The now-retired Science-Ish column, written by current Vox contributor and Knight Science Journalism Fellow Julia Belluz, was a fantastic model of high profile science/medical communication. Health feature writer Kate Lunau is also great. Everything I know about Polish democracy, I owe to Maclean’s political writer Paul Wells. So while Maclean’s is typically a great, evidence-based read, this editorial was neither.

Let me begin by saying that I’ve been appalled at how slow the response to the Ebola epidemic has been. Before I get to the editorial, I would like to urge everyone to consider donating to Medecins sans Frontieres, who are coordinating much of the Ebola response. There’s no question this is an important health issue that demands attention. However, I fail to see how prioritizing focus on infectious diseases over the long term at the expense of chronic disease will improve health (especially in developed nations).

Ok, now to my complaints. Below are my arguments, along with excerpts from the editorial (emphasis mine throughout).

Ebola vs cigarettes

From the editorial:

More than 4,500 Africans have died of Ebola to date. The number of new infections is doubling every month. Health facilities in hot-zone countries Guinea, Liberia and Sierra Leone are overwhelmed and understaffed. And while Canada has so far been lucky in avoiding infection, on Sunday, U.S. President Barack Obama mustered the Pentagon into the fight after the botched response by civilian authorities left the American public nervous. Meanwhile, the head of the World Health Organization (WHO)—the UN body meant to provide leadership during international health emergencies—has bigger things on her mind.

Last week, as the Ebola crisis deepened, the director-general of the WHO, Margaret Chan, was in Moscow hosting a conference on tobacco control. “Yes, Ebola is truly an issue of international concern,” she told the Wall Street Journal. “But tobacco—if we put the evidence on the table—tobacco control is still the most cost-effective and efficient way of reducing unnecessary diseases and deaths arising from using such harmful products.” The conference concluded with an agreement on the necessity for ever-higher tobacco taxes. (Canada and the U.S. boycotted the assembly because of sanctions against Russia.)

Ebola may be scary, but cigarettes are scarier.

While diseases like Ebola are terrifying, the death tolls are still relatively small compared to chronic diseases, even in many developing countries. Smoking is the # 1 preventable cause of death worldwide, and is responsible for roughly 17% of deaths in Canada. So quite frankly, it does make sense for the WHO and other public health agencies to discuss ways to reduce tobacco related deaths, even while the Ebola response is ongoing.

Let’s put this in perspective. So far, 4,922 people have died worldwide from Ebola. In Canada alone, 37,000 died in 2011 due to tobacco use. An astounding 480,000 Americans died in 2010 from tobacco related deaths. Put another way: tobacco kills more people than Ebola every three days. So yes, cigarettes are scarier than Ebola, at least in terms of their ability to kill.

And that’s just cigarettes. As chronic diseases account for an ever greater percentage of deaths worldwide (68% of all deaths worldwide are due to chronic disease in 2012), it seems reasonable that public health agencies give them increased attention. By any objective measure, reductions in smoking rates, and related reduction in tobacco-related deaths are an unmitigated public health success story.

Change of focus, or lack of funding?

As Maclean’s illustrated in their cover story last week, the WHO’s inability to deal with the Ebola outbreak isn’t due so much to their focus on chronic diseases like obesity, as to the fact that their funding has been diminishing for years. From that cover story:

The WHO has failed to provide that leadership, [Kelley Lee, a global health professor at Simon Fraser University] explains, for a “perfect storm” of reasons: an ineffective WHO African regional office, political and economic instability in the area and, most of all, because it doesn’t have the money it needs to do its job. The WHO’s regular budget has promised “zero real growth” since the 1980s, only increasing spending to account for inflation. It tightened its belt further in the late ’90s and froze the budget in absolute terms.

In contrast to their article above, the editorial implied that the reason for the spread of Ebola was because of “mission drift” towards a focus on chronic diseases. From the recent editorial:

Unfortunately, this sort of bizarre mission drift is not unique to the WHO. Public health officials around the world have succumbed to a similar preference for tackling issues of personal choice, the free market and political causes apparently inspired by the Occupy movement. The predominant public health fixation in developed countries these days is the so-called obesity epidemic and the alleged need for food taxes, along with other intrusive measures, such as New York’s failed Big Gulp soda ban, to correct this situation.

The mandate of any public health organization is to promote health. Period.

If your goal is to promote health/reduce the risk of disease, then it makes sense to focus on whatever factors are linked to disease… be they viruses, behaviours, or income. At some times and locations it will make sense to focus on infectious diseases, at others on chronic diseases. As discussed below, there are some countries that need to focus on both simultaneously.

The only real argument against focusing on all disease, and all causes of disease, is that some people object ideological grounds, in the absence of data. But there isn’t a strong case to be made in terms of evidence. The Social Determinants of Health framework has shown that the environment you are exposed to have direct impacts on your health – the neighbourhood you live in, the people you associate with, your family structure, all of these can impact health in a multitude of ways. Health is not exclusively at the mercy of bacteria or viruses. This was nicely illustrated in an article published in Macleans in 2013, which included this extremely informative infographic:

Image via Macleans.ca

And now the most confusing portion of the editorial

Last year, Toronto’s activist public health office chastised ABC TV for adding actress Jenny McCarthy, a vaccination critic, to the cast of its talk show The View. It is apparently necessary to remind public health officials that their mandate (and competency) does not include individual food choices, income disparity, trade, agricultural policy or network programming decisions.

This year has shown a tremendous spike in the number of measles cases in the US (see image below). Most of the infected individuals were unvaccinated. Thus, the reason that public health agencies objected to Jenny McCarthy getting a daily television platform is that she is the standard bearer of the anti-vaccine movement. Even if public health agencies focused primarily on infectious diseases as the editorial suggests, it would still make sense for them to publicly oppose her views, and to advocate against giving her a prominent daily platform on network TV. While we cannot stop the network from hiring her, we can be outspoken critics of the dangerous views she represents, and ensure that the public understands that her views do not represent the mainstream, and in fact represent a dangerous alternate reality.

Chronic diseases are a considerable (and increasing) burden, even in developing nations.

While the leading causes of death and disease in Africa are mostly infectious in origin, their role has been decreasing, while the role of chronic diseases has been increasing. Between 1990 and 2010, the disease burden of diabetes in sub-Saharan Africa increased by almost 90%. Only HIV/AIDS saw a greater increase in disease burden than diabetes over this period. The burden due to stroke and heart disease also saw increases of more than 30% during that period, while the disease burden due to respiratory infections, diarrheal diseases and malnutrition all decreased by 15-35%. This is not to say that infectious diseases have been vanquished – HIV and malaria remain the top causes of death and disease in Sub Saharan Africa – but developing nations have the unenviable task of addressing high rates of infectious disease while also seeing increasing levels of chronic disease; a situation referred to as the “double burden” of disease.

The line between infectious and chronic diseases is blurring.

We’re now finding out that several types of cancer (cervical, throat, etc) are linked to viruses, and are therefore in some sense an infectious disease (so too is obesity, and other disease-virus links are likely to follow). At the same time, advances in medications have led some to suggest that HIV is essentially a chronic disease, since it can be managed more or less indefinitely with proper medications (a key characteristic of chronic diseases is that they are long lasting, typically with no true “cure”). If public health agencies were to focus primarily on infectious diseases, would cancer be included? Only those that are specifically linked to viruses? What about HIV? Would that be too much “mission drift”? Or should we only focus on diseases that are dominating the news cycle at any particular point in time?

Final thoughts

Image source

Chronic diseases are much more complicated than infectious ones. We know what causes Ebola, smallpox, and HIV. While it’s not necessarily easy to prevent or cure these diseases, at least the process is itself relatively simple. Contrast that with the risk factors for obesity in the above graphic (a similar graphic could be made for heart disease or diabetes). With a chronic disease it’s often difficult to even determine the key risk factors, let alone agree on the best methods of treatment or prevention.

I know that many people are ideologically opposed to public health agencies focusing on chronic diseases. Chronic diseases are seen as being due to “lifestyle”, while infectious diseases are seen as something outside of our control. Unfortunately there’s little evidence to support that view, and even less evidence that focusing our efforts on infectious diseases will result in better health or longevity in Canada or abroad.

Category: Cancer, Determinants of health, Health systems, Industry, Infectious disease, Nutrition | Tagged , , , , , , , , , | Leave a comment

What is the scariest disease? Depends how you define scary.

IMG_20141029_144136Whether you’re personally afraid of Ebola or not, you have to admit it’s a scary disease: no vaccine, no cure, and high fatality rate are just a few of its distinguishing features. Recently I polled my friends on what diseases they were afraid of, and many of the ones that made the list were things like cancer and alzheimer’s, conditions that can’t be easily prevented or cured, and that have a high likelihood of developing agonizing symptoms.

While public health priorities should focus on the largest or fastest-growing threats, fear is a personal thing that doesn’t always match up with objective numbers. Influenza kills more people each year than Ebola ever has, but that doesn’t automatically make it scarier. Here, I’ll take a look at a few ways to rank how “scary” a disease might be:

1. How likely am I to die of it?

2. If I catch the disease, is death inevitable?

3. How contagious/infectious is the disease?

 

How likely am I to die of it?

Total fatalities are a good place to start, if only to show off how backwards our intuition can be. If something is responsible for a lot of deaths in absolute numbers, it means it’s a high percentage of total deaths, and thus, more likely that you will die of it. So what are the major killers worldwide?

From the World Health Organization

From the World Health Organization

Only three of the top ten are infectious diseases: lower respiratory infections (think pneumonia), HIV/AIDS, and diarrheal diseases, which include the likes of rotavirus, E. coli, and cholera. If you want to rank specific germs, the top three are:

1. HIV (AIDS) – 1.6 million deaths in 2012

2. Mycobacterium sp. (tuberculosis) – 1.46 million deaths in 2013

3. Plasmodium sp. (malaria) – 627,000 deaths in 2012

Selected honorable mentions, for comparison:

* Influenza: estimated range of 250,000-500,000 each year  (there is a vaccine for this, about 60% effective)

* Pertussis: 195,000 deaths each year  (there is a vaccine for this, 80-90% effective depending on age but decreasing over time)

* Measles: 122,000 deaths each year  (there is a vaccine for this, 95% effective)

* Ebola can’t keep up in this category. Through 2013 it caused only 41 deaths per year. The current outbreak stands at 4,877 deaths as of October 22, although if it’s not contained it has the potential to climb high on our list. See this essay on the potential for Ebola to become endemic in Africa. You want scary? That’s scary.

That said, your chance of dying of anything is only about 1% per year. Let’s keep our focus on infectious diseases and look at a scarier statistic…

 

If I catch the disease, is death inevitable?

There’s a metric for that: the case fatality rate, or CFR. (As in, how many cases of this disease result in fatality?)

Several diseases have horror-movie-ready CFR’s of 100 percent or close to it:

  • Creutzfeld-Jakob (the human version of mad cow)
  • Kuru, another prion disease
  • Naegleria, the brain eating amoeba
  • Rabies (untreated—the typical treatment is to administer rabies vaccine after exposure but before the patient starts showing symptoms. There are no official numbers on the effectiveness of this vaccine, but anecdotally it’s close to 100%).

Some other high CFR diseases:

  • Inhalational anthrax – 93%
  • HIV, if untreated, in developing countries – 80-90% mortality within 5 years
  • Ebola – 71% in the current outbreaks, according to the best estimates.
  • MERS-CoV, an emerging disease that is related to SARS and associated with camels: 45%

Does Ebola’s CFR surprise you? The current outbreak has twice as many cases as deaths, which would seem to put the CFR around 50%. But it’s tricky to calculate CFR for outbreaks that are ongoing and even growing, since the total cases include people who will die, but haven’t yet. Example: say you open an Ebola clinic and admit ten patients, seven of whom will die. If nobody is dead by the end of the day, you might say the CFR is 0%. Next week, if five of them have died, you would calculate the CFR at 50%, and in the meantime maybe you’re admitting five new patients, which instantly drops the rate to 33% (5 out of 15). But if you track those original ten patients over time, you’ll get the right answer – 70%. Here is a discussion of current estimates of Ebola’s CFR.

 

How infectious/contagious is it?

Let’s be clear: these are two different questions. Something is very infectious if it takes very few germs (virus particles, bacterial spores, etc) to trigger disease. Ebola is extremely infectious; so is inhaled anthrax.

A disease’s contagiousness, on the other hand, doesn’t count individual microorganisms, but rather describes how quickly it spreads. Say you share a funny cat picture on facebook and it’s so good that ten friends post it on their walls. Ten of each of their friends post it, and ten of theirs, and so on; that picture will eventually be all over the internet. But if you share a funny picture of your lunch instead, and most people who see it (are “exposed” in epidemiology speak) don’t bother to pass it on, that meme will soon fizzle out.

In epidemiological terms, our funny cat picture has a basic reproduction number, or R0 (pronounced “R naught”) of 10. Our lunch picture, somewhere near zero. An infectious disease needs at least an R0 of 1 to spread; that would mean each person spreads it to one other person. Ebola’s R0 is somewhere around 2; think of the Dallas patient that spread the disease to two health care workers. That’s a typical case.

Measles clearly gets the gold in this contest, with an R0 of up to 18. That means that, in many outbreaks, each sick kid was infecting an average of 18 friends. Here’s a ranking from Wikipedia, taken from published data on each entry:

 Values of R0 of well-known infectious diseases

Disease

Transmission

R0

Measles

Airborne

12–18

Pertussis

Airborne droplet

12–17

Diphtheria

Saliva

6–7

Smallpox

Airborne droplet

5–7

Polio

Fecal-oral route

5–7

Rubella

Airborne droplet

5–7

Mumps

Airborne droplet

4–7

HIV/AIDS

Sexual contact

2–5

SARS

Airborne droplet

2–5

Influenza
(1918 pandemic strain)

Airborne droplet

2–3

Ebola
(2014 Ebola outbreak)

Bodily fluids

1-2

 

Important public health message: Note that the top seven diseases on this list are vaccine-preventable. If you get your kid the MMR and DTaP-HepB-polio shots, that’s all seven (plus tetanus and hepatitis B as a bonus) prevented with just two jabs of the needle. Not a bad deal.

 Here’s a good explainer on the difference between infectious and contagious (and, bonus: the difference between isolation and quarantine).

 

Bottom line

Which diseases are the scariest? It depends on what scares you. Ebola ranks high for its case fatality rate alone. HIV made all of our short lists, and it’s still not preventable, although treatments are available that can mitigate symptoms for years. Heart disease and stroke are more likely to kill you than any disease, but if you have a choice of what to catch, your odds are better with the flu than with kuru or brain-eating amoebas—which are, thankfully, rare. But ultimately, it’s up to you to decide what disease should be the star of your next nightmare.

Fun fact: The disease in the 1995 movie Outbreak was not Ebola, but the fictional “Motaba virus.” Symptoms were Ebola-like but it had a 100% case-fatality rate and airborne transmission. I’m unaware of any calculations of its R0; anybody want to watch it and run the numbers?

 

 

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12 simple ways to prevent cancer

heart1

33% to 50% of all cancers are attributable to preventable lifestyle causes, such as smoking and tobacco use, poor diet, alcohol consumption, and obesity (1-3). Genetics play a tiny role, causing only 5-10% of all cancers. The remainder of cancer cases can be attributed to environmental factors such as radiation, infections, and occupational exposures such as asbestos.

Given this information, we should understand that cancer is preventable and it’s not necessarily fate or the luck or draw when it comes to getting cancer.

Public attitudes towards cancer are poor: two-thirds of the American public believe that everything causes cancer and almost one-third believe that there’s not much you can do to lower your chances of getting cancer (4).

Luckily, the latest edition of the European Code against Cancer has just been released. It is a project coordinated by the International Agency for Research on Cancer and consists of 12 simple evidence-based recommendations for individuals to reduce their risk of cancer.

The 12 recommendations for cancer prevention are as follows:

1. Do not smoke. Do not use any form of tobacco.

2. Make your home smoke-free. Support smoke-free policies in your workplace.

3. Take action to be a healthy body weight.

4. Be physically active in everyday life. Limit the time you spend sitting.

5. Have a healthy diet:

  • Eat plenty of whole grains, pulses, vegetables, and fruits
  • Limit high-calorie foods (foods high in sugar or fat) and avoid sugary drinks
  • Avoid processed meat; limit red meat and foods high in salt

6. If you drink alcohol of any type, limit your intake. Not drinking alcohol is better for cancer prevention.

7. Avoid too much sun, especially for children. Use sun protection. Do not use sunbeds.

8. In the workplace, protect yourself against cancer-causing substances by following health and safety instructions.

9. Find out if you are exposed to radiation from naturally high radon levels in your home. Take action to reduce radon levels.

10. For women:

  • Breastfeeding reduces the mother’s cancer risk. If you can, breastfeed your baby.
  • Hormone replacement therapy (HRT) increases the risk of certain cancers. Limit use of HRT.

11. Ensure your children take part in vaccination programmes for:

  • Hepatitis B (for newborns)
  • Human papillomavirus (HPV) (for girls)

12. Take part in organised cancer screening programmes for:

  • Bowel cancer (men and women)
  • Breast cancer (women)
  • Cervical cancer (women)

Every single item on this list is important. If you identify something on this list that you could improve, do it. If you’re unsure or have questions, talk to your GP.

Although the list is stated in incredibly simple terms, in reality it’s not that simple to change many of these behaviours. Some things on this list, like smoking, are habit-based and incredibly difficult to change. Pressures of daily life get in the way and we often have to prioritise the here and now, rather than take time out for something that won’t affect us for probably many years. For example, going for cancer screening can be stress inducing and time-consuming, but it could save your life. There are other structural barriers too, such as the increasing cost of a healthy diet.

Although we know that many cancers are preventable, this knowledge does not mean that if you do get cancer, you are to blame. In reality, the true causes of any individual’s cancer are often impossible to disentangle and victim blame is never helpful. In any case, knowledge is power and making an informed decision about your own lifestyle is the best way to approach it. Know that many cancers are preventable, and also what you can realistically do to reduce your own personal risk.

For more information, visit the American Cancer Society, Cancer Research UK, or World Health Organization websites, or talk to your GP or another health care professional.

 

References

  1. Parkin DM, Boyd L, Walker LC. 16. The fraction of cancer attributable to lifestyle and environmental factors in the UK in 2010. Br J Cancer 2011;205:S77-81.
  2. Anand P, Kunnumakara AB, Sundaram C, Harikumar KB, Tharakan ST, Lai OS, et al. Cancer is preventable disease that requires major lifestyle changes. Pharm Res 2008;25(9):2097-116.
  3. World Health Organization. Global cancer rates could increase by 50% to 15 million by 2020.  http://www.who.int/mediacentre/news/releases/2003/pr27/en/ (accessed 18 October 2014).
  4. Kobayashi LC, Smith SG. Cancer fatalism, health literacy, and information seeking: a national survey of American adults. In prep.

Image source: Underground Health Reporter

Category: Cancer, Epidemiology, Fitness, Infectious disease, Nutrition, Preventable Deaths | Tagged , , , , , , , , , | 1 Comment

The ethics of mobile health technology

 

 

 

 

 

 

 

 

Today, we welcome back Priya Kumar, a digital researcher from the University of London for part two of an interview on mobile health. If you missed part one, you can catch up here.

 

LK: What issues surround the ethics and governance of mHealth?

PK: As I mentioned in the first part of this interview, we expect that by 2017, 85% of the world’s population will be covered by a commercial wireless signal (1). Wireless networks cross state borders. However, ethics and governance mechanisms for virtual technology are still unclear, and particularly so for apps on hand-held devices. A notable instance was in September 2013, when the FDA released guidance for the developers of mobile medical apps. They defined ‘mobile medical apps’ as those which are intended ‘to be used as an accessory to a regulated medical device’ or ‘to transform a mobile platform into a regulated medical device’ (2).

These criteria are defined so that the majority of health apps are not considered ‘mobile medical devices’ and are therefore not FDA-regulated as ‘they post minimal risk to consumers’.

A study published in the New England Journal of Medicine in July 2014 discussed that only about 100 out of about 100,000 health care apps are FDA approved (3). According to the article, members of US congress and industry are lobbying for even less regulation of mHealth, with the worry that ‘applying a complex regulatory framework could inhibit future growth and innovation in this promising market’ (3,4).

The ownership of health data collected through these apps is unclear. Different from other apps that automatically share your data, health apps often require the user to sign off to third party sharing (such as allowing you Apple HealthKit data to be shared with the WebMD app), and here informed consent becomes an issue. This question also relates to privacy and data security issues.

The new HealthKit on the latest iPhone operating system claims to store health data in a separate place ‘away’ from the cloud, but we as the public don’t really know where this ‘away’ is or how secure it is.

On the marketing side, there are still many questions about intellectual property, the idea of competition, and whether health care service should be something we’re competing over or not. Digital ethics are constantly evolving country to country. There are over 150 countries that have yet to develop any kind of regulatory framework for apps. A one size fits all model is not possible for mHealth. Every country has a unique health system, which these apps must fit with.

 

LK: If mHealth apps are used a tool for health management, what could this mean in the context of private and public health systems?

PK: Health apps can allow us to address gaps in institutions, in service delivery, and in public knowledge. All of these things can be facilitated through a simple download. Applications targeted at patients, such as in cancer or HIV/AIDS can be very useful in providing automatic medication reminders, dosage information, and mobile support groups. The first HIV/AIDS app to come out on the market was from the UN (UNAIDS) in June of 2011. The UN app provides HIV/AIDS fact sheets for 129 different countries, with charts of epidemiological data on HIV/AIDS and the number of individuals taking anti-retroviral drugs. This UN app, in a way, shrinks space through infiltrating global consciousness with the international priority that we have given to HIV/AIDS.

app-facing-aids

Facing AIDS | AIDS.gov

There are other functions of HIV/AIDS apps as well. One is called ‘Facing AIDS’. It allows you to take a ‘selfie’ and upload it to the app to show how you are personally ‘facing’ AIDS. The picture can be of you, a family member, a friend, anyone affected the illness, and it can be shared across your social media platforms. The purpose of the app is to reduce the stigma surrounding HIV/AIDS and make it more visible. There is also ‘inPractice HIV’, which is an app for health care professionals. It gives guidance for patient care, provides an FDA approved drug database, and research abstracts from PubMed. Then you have ‘PozTracker’, which is a personal HIV management app, which allows you to track your medication needs, monitor your test results, and time your medication dosages. This app creates your personal history as an HIV patient.

mHealth apps address HIVS/AIDS at multiple scales from international organisations to your doctor’s clinic and your own social network.

An interesting facet to how these apps are used is the in-store user reviews. As an HIV/AIDS patient, apps are reviewed and vetted by your global community and that carries a lot of weight. These discussions about illness happen in real-time, and that shrinks the world in a way. The only ethical issue I would raise is that the benefits of these apps depend on how they are treated in the social context of the countries in which they are used. Wireless networks transcend borders, but not every country has the same health system and health care policy.

 

LK: Who is at risk of misuse of mHealth apps, and on the flip side, who is the most likely to derive real benefit from them?

PK: The most obvious negative consequences can be oversimplification of health issues, developing hypochondria, and also questions of accountability. If we follow the guidelines given in a health app and something bad happens, who is accountable? In this way, apps can disturb the traditional primary care model of health delivery. A commonly reported misuse is in melanoma detection apps. In principle, they appear to be very easy, you take a snapshot of a skin mole and it calculates the risk that it may be cancerous. But, the best practice is to see a doctor for consultation. Another example is apps to aid in breast self-examinations. These apps offer self-examination tutorials and alarms to remind you to do your self-exam. Although these apps can provide useful information about the symptoms of breast cancer, at the end of the day, any health care provider would say that self-examinations do not replace a mammogram (5). If self-examinations are not recommended, then what message does that send to people who are downloading and using these apps?

photo

Should this be allowed? | Your Man Reminder app

 

LK: That’s right, we place a lot of trust in the information that we receive online, particularly if we receive it via the Apple store. There is some kind of legitimacy associated with the store, particularly if an app is well designed and looks nice. Also we place a lot of trust in the health domain, we trust doctors and maybe we implicitly see these apps as an extension of that.

PK: Exactly. The public is being misinformed in this instance. On the one hand, the US National Cancer Institute says that routine breast self-examinations are not effective in reducing mortality from breast cancer, (5) but on the other, the Apple store give us multiple apps you can download to help with your regular self-examination. The medical accuracy of these apps needs to be validated.

 

LK: That’s where FDA or other regulatory approval should come in.

PK: Yes. I would say that with respect to the ‘reach’ of apps, it’s too early to draw any conclusions on the positive or negative sides of these apps. We might have more information and we might be able to hold our health care providers accountable through harnessing our own power through these apps, but we have to be responsible. Second of all, and perhaps most importantly, within the next year there are going to be 500 million smartphone users newly using health apps (6). We really don’t know the long-term behavioural impacts of these health applications. Even just having certain apps embedded in our phones upon purchase impacts our day-to-day behaviour. That’s where I think health sciences can play a role. There are clinical trials currently collecting data through Apple’s HealthKit, so we have to increasingly acknowledge that there is a behavioural component of these apps. There is a patient-consumer-producer relationship that we need to figure out. And that’s not going to happen right away.

 

LK: What the directions that we need to take, as researchers, looking forward?

PK: I think that all researchers who are interested in virtual technologies need to collaboratively develop effective tools to capture the depth and scope of these technologies. And to do that will be very difficult. To capture the intricacies of these phenomena, to capture both sides of the screen and be able to see the transformative impact of online technology will require a more collaborative relationship between qualitative and quantitative methodologies.

We are going to have to reshape our methods, with the understanding that scientists using pre-formulated hypotheses do not generate virtual data; rather, virtual data are user-generated and purely observational.

And for a lot of researchers that may be a little bit threatening. That’s the nature of these applications. Whether or not health researchers and even social scientists may not like subjective or user-generated data, the reality is that these are now being looked at.

LK: Any final words?

PK: The final thing I would say is, as researchers, we need to understand that the iPhone or Smartphones are now the standard. For people younger than us, something like the HealthKit is normal, nothing special. The market monopoly of the iPhone means that the HealthKit has the potential to infiltrate our everyday behaviours in ways that we may not even consider. That’s where you see the boundaries of scientific data slowly expanding, and it’s user generated. Finally, another really interesting future question ethically would be if we look at mobile providers. They actually cut the population. As a virtual researcher, the first thing I think is that if we look at health apps, we’re looking at a Samsung device or an iPhone, for example, and it may be that these service providers are able to cut populations into different datasets. Samsungs don’t have the HealthKit. Only the iPhone has it. So Apple may end up having a dataset that Samsung doesn’t have, and vice versa. Whether or not we want to engage with these market and consumer realities from a theoretical and academic perspective, we have to acknowledge that they are there and they will shape our data. In that way, there is a lot of research potential and we really need a lot more collaboration between social sciences, health sciences, and public policy and governance as well.

 

References

  1. Savitz E. Ericsson: 85% global 3G coverage by 2017; 50% for 4G. Forbes. 6 May 2012. http://www.forbes.com/sites/ericsavitz/2012/06/05/ericsson-sees-85-global-3g-wireless-coverage-by-2017-50-4g-coverage/ (accessed 12 October 2014).
  2. U.S. Food and Drug Administration. Mobile medical applications: guidance for industry and Food and Drug Administration staff. U.S Department of Health and Human Services. 2013. http://www.fda.gov/downloads/MedicalDevices/…/UCM263366.pdf
  3. Cortez NG, Cohen IG, Kesselheim AS. FDA regulation of mobile health technologies. N Engl J Med 2014;371:372-9.
  4. Letter from Representative Marsha Blackburn et al., to Margaret Hamburg, FDA Commissioner, and Julius Genahowski, FCC Chair. 3 April 2012. http://blackburn.house.gov/uploadedfiles/letter_from_congress_to_fda_and_fcc_-_3apr2012.pdf
  5. National Cancer Institute at the National Institutes of Health. Breast Cancer Screening (PDQ®). http://www.cancer.gov/cancertopics/pdq/screening/breast/healthprofessional/page1 (accessed 15 October 2014).
  6. U.S. Food and Drug Administration. Mobile Medical Applications. http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/ConnectedHealth/MobileMedicalApplications/ucm255978.htm (accessed 15 October 2014).
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Health in hand: mobile technology and the future of healthcare

Flurryapps

Wi-Fi, smartphones, and all associated phenomena have permeated lives all around the globe. We are just seeing the first generation of humans to grow up with these things – the first of the ‘digital natives’. The health implications of virtual information and communication technologies have recently been questioned by academics, with forecasts of growing inequalities in health due to differential population access to virtual technologies (1), along with unequal distributions of the literacy skills and ability to find and use high-quality online information. June of 2014 brought about a shift in the digital market, whereby average daily use of health and fitness apps grew by 62%, outpacing the use of apps overall, at only 33% growth (2).

PLOS Public Health Perspectives is pleased to welcome Priya Kumar to discuss these issues on the blog. Kumar is a nearly finished doctoral candidate in the School of Oriental and African Studies at the University of London. Her doctoral research questions the impact of the World Wide Web in fostering online and offline connections between migrant communities around the globe. She is an expert in digital research methods and online content analysis.

This piece will be conducted in two parts, check back on Thursday, 16th October for Part 2.

 

LK: Why are the growth of mobile apps and the data they produce interesting to you?

PK: As a researcher of virtual phenomena, I find that mobile apps are an interesting area now that mobile devices are outselling personal laptops. The largest area of mobile app growth is in health and fitness, which will have ramifications in terms of the dissemination of health information, individual behaviors, and health care delivery. There are also questions about the governance and ethics surrounding the vast amounts of cloud-based personal health data that are being generated, such as in the health apps embedded within the Apple and Android operating systems.

Given the recent data leakage scandals surrounding the cloud, privacy is of primary concern for everyone involved (3). And ‘everyone’ is a lot of people: individuals, as both consumers of digital apps and patients within health care systems, also the producers of the apps, and health care providers themselves.

Mobile health apps raise big questions for health ethics in the future. On the positive side, as researchers, we can now look at more long-term and specialized data for certain diseases that can be collected through these apps that we could not look at previously.

 

LK: What does the recent growth of the mobile health (mHealth) and digital health wearables market mean for how we ‘consume’ health and fitness?

PK: Mobile apps are interesting because they are available across countries. By 2017, 85% of the world’s population is expected to be covered by a commercial mobile signal (4). That transcends state borders, and in that way, mobile apps bring about a lot interesting questions for anyone studying regulatory frameworks and state-based policy.

For me, the word, ‘consume’ is interesting as it identifies a new type of health ‘consumer’ that wasn’t there prior to the introduction of mobile health apps. There are at least three different broad uses of health apps: for personal fitness and well being, for clinical and care-enhancing tools, and for health research. The first usage, fitness and well being, most directly relates to ideas of consumption. On this side, we will continue to see increasing types of consumer benefits with these apps over time as more and more are produced. A potential target on both of the clinical and health research sides is the ability to track health behaviors through these apps over long-term periods. Still, we have to consider that the majority of health care delivery services are through health practitioners. And although we can define these broad uses, the output targets are not well defined.

We don’t really know what will happen in terms of the ‘consumption’ of health, or whether health is something that should be ‘consumed’.

healthkit

 

LK: In that case, are mHealth apps a flashy feature or a real tool?

PK: To even question the idea of apps being ‘flashy features’ versus being real transformative tools, we have to look at the online-offline nexus. What that means is the effects that health apps are having in the ‘real’ world. Understanding these phenomena on the research side of things will require mixed qualitative and quantitative methods. We need to see a lot more collaboration across disciplines in order to characterize ‘hand-held health’, to really understand the health, health care, marketing, and creative sides of apps, and the idea of the patient as a mobile consumer. We need to tap into more collaborative relationships to gain a sense of how effective apps are in improving population health. For example, a 2013 study by the IMS Institute for Healthcare Informatics analyzed over 40,000 health apps to investigate how beneficial mHealth is to healthcare (5). Just over 16,000 health apps were for patients to help enhance their healthcare, 7,000 were directed at health care professionals themselves, and over 20,000 were not actually related to health care (5). Clearly, a minority of apps is targeted at improving patient experience in health care at the moment. The image below shows findings from the IMS report.

Screen Shot 2014-10-12 at 16.19.16

The phenomenon of ‘hand-held health’ is complex. With Apple’s HealthKit and the other health tracking apps embedded in Android software, it’s becoming the norm to track health. For those of us above the age of 25, these are cool features, but we have to consider younger generations, the ‘digital natives’ who will be growing up with pre-existing social and digital norms surrounding these things. Behavioral changes in health care consumption stimulated by apps may lead to changing norms surrounding health care in the future. And maybe even the ethics surrounding sharing of personal health data will change, if we don’t view it as being so private in the future. But, we really don’t know these things. Health apps have really only been around for about four years, that’s not a lot of time.

 

LK: Who uses mobile health apps?

PK: Usually they are targeted demographics. In general, the users of the ‘flashy features’ such as tracking running, heart rate, and counting steps are termed ‘fitness fanatics’. These people are typically women between the ages of 24 and 54 and come from relatively privileged backgrounds (2). In North America and in western European countries, it appears that the market emphasis is on these types of complementary apps for leisure-based users.

Health behaviors become more visible through social media, such as uploading running distance to Facebook through the Nike app. However, this visibility doesn’t necessarily mean that these apps are efficacious in improving health.

The second trend, beyond western societies, is in developing countries. Usually, these countries end up ‘leap-frogging’ technologies. What that means is that in the African continent, for example, most of the virtual technology that is used comes from hand-held smartphone devices rather than from laptops, which have been in large part bypassed. One of the most notable cases is with Samsung. Within this year, all Samsung mobile devices distributed in the African continent will be embedded with a free app called ‘Smart Health’. The app is claimed to be ‘the first ever Pan-African Mobile Health Delivery Network’, and was launched by Mobilium Global in seven countries: Nigeria, Kenya, South Africa, Angola, Ghana, Tanzania, and Senegal (6). It’s been heralded as a comprehensive app with real-time information on three pandemics, HIV/AIDS, tuberculosis, and malaria, along with approved symptom checkers for each disease (6).

The app provides access to information that individuals may not easily get from their governments or public health authorities. The app builds a health-related institution, which functions across state boundaries and allows for more civic engagement with health issues. In this context, the app could be very beneficial and now that it is built into Samsung technology, it becomes the standard through which users are questioning their health. Maybe this level of accessibility is something that we in the western world take for granted. However, when something is built into your phone without you even asking for it, it becomes an unquestioned part of your language, something that’s not taboo and something that you can discuss.

 

Check back on Thursday, 16th October for Part 2 of this piece, covering the ethics and governance of mobile health apps and risks of their use.

 

References

  1. Viswanath K, Nagler RH, Bigman-Galimore CA, McCauley MP, Jung M, Ramanadhan S. The communications revolution and health inequalities in the 21st century: implications for cancer control. Cancer Epidemiol Biomarkers Prev. 2012;21(10):1071-8.
  2. Khalaf S. Health and fitness apps finally take off, fueled by fitness fanatics. Flurry Insights. http://www.flurry.com/blog/flurry-insights/health-and-fitness-apps-finally-take-fueled-fitness-fanatics#.VDlXESldV5k (accessed 11 October 2014).
  3. BBC. FBI investigates ‘Cloud’ celebrity picture leaks. BBC. 2 September 2014. http://www.bbc.co.uk/news/technology-29011850 (accessed 11 October 2014).
  4. Savitz E. Ericsson: 85% global 3G coverage by 2017; 50% for 4G. Forbes. 6 May 2012 (accessed 12 October 2014).
  5. IMS Institute for Healthcare Informatics. Patient apps for improved healthcare: from novelty to mainstream. IMS Institute for Healthcare Informatics. 2013.
  6. Mobilium Global Limited. Mobilium announces launch of breakthrough mobile health App ‘Smart Health. http://mobilium.com/about-us/october-2013-mobilium-smart-health-app/ (accessed 12 October 2014).
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Fear vs. apathy as Ebola expands beyond Africa

Map of Ebola Outbreak - 1 October 2014

Should you be afraid? How afraid? While it’s tough to report well on any public health issue, it’s especially tough in the case of Ebola, where the essential messages seem to be contradictory: First, that Ebola is dangerous and devastating; and second, if you don’t live in the location of the current outbreak, the danger to you personally is next to zero.

Playing up the devastation feeds fears, while emphasizing the safety of a well-organized health system can backfire if it leads to “othering” and disrepect for African lives. In fact, Nigeria did a fine job of eliminating its own Ebola outbreak, as did Senegal and the town of Harbel, Liberia, proving that it’s not “western” medicine that’s essential, but simply having the resources and urgency to get the job done.

Lack of concern for Africans’ health is arguably a part of what allowed this outbreak to become an epidemic in the first place. The World Health Organization points to its own under-funding; ironically, the outbreak is poised to cause billions of dollars in economic damage as farms and businesses shut down.

We made fun of Africans’ conspiracy theories (Of course Ebola is real! No, the doctors aren’t just trying to harvest your organs!) but are now manufacturing our own. Natural News publishes advertisements disguised as conspiracy theory disguised as public health messages. Pundits blame the American president for somehow deliberately cultivating the epidemic, and apply just a little bit of xenophobia in advocating a travel ban that would probably just make things worse.

Perusing these, inevitably you’ll see citations for a years-old study that supposedly showed Ebola can be transmitted through the air; more recent experiments show that it can’t. But that doesn’t stop people from seemingly confusing Ebola with the airborne, 100% fatal Motaba virus featured in the 1995 movie Outbreak. That virus, in case you couldn’t tell, is fictional.

We need a healthy respect for the virus. It can cause not just a horrible death, but a horrible death isolated from loved ones. But we also need a healthy respect for the families and countries that are being torn apart by the disease. To proclaim that you’re not concerned about Ebola may sound at first like a healthy skepticism of sensationalized news. But then, why doesn’t it bother you that the disease is orphaning children and devastating villages?

It will be a good thing if this outbreak leads to enough outrage and motivation to come up with vaccines and treatments and awareness and public health funding that can be used to quash it where it pops up in the future. Perhaps the worst outcome would be if Ebola becomes endemic in Africa. Then it could join the ranks of malaria and civil war as a major killer that, internationally, is too often ignored.

(Just as I was posting this, I saw a statement from the CDC director along the same lines: he said, “We have to work now so that this is not the world’s next AIDS.”)

 

 

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IUDs and implants have checkered pasts but a pretty awesome present

This week, US pediatricians (in agreement with a previous report from US gynecologists) announced a set of recommendations on contraceptives for young women. The headline grabber: IUDs and implants should be first-line choices. After all, they’re safe, effective, and as “set it and forget it” methods, reliable.

IUDs, formerly obscure, have become a little more popular in recent years. But implants? I didn’t know they were even still on the market.

20101009 1705 - Museum Of Sex - vintage IUDs - IMG_2282

Vintage IUDs at the Museum of Sex. The finger is pointing at the one you want (it looks like the Copper T). You do not want the other ones.
Photo by clintjcl, CC BY-NC-SA 2.0

Both have bad reputations based on ancient history, although (as the AAP and ACOG say) modern versions beat out other forms of contraception on almost any cost/benefit analysis. To those who object to potential side effects of hormonal contraceptives, it’s important to remember that contraceptives are safer than pregnancy.

So what’s the deal with these devices and why are they so obscure? Let’s step back into the time machine. First stop: 1971.

IUDs: the past

The Dalkon Shield, an IUD introduced that year, ended up being sold to 2.5 million women, of whom 17 died and 200,000 experienced infection, miscarriages, and hysterectomies. Lawsuits followed, some with hefty settlements, and it was pulled from the market.

IUDs: the present

Discussing this history, Anna Bahr of Ms. Magazine quips that “the new and improved IUDs are like iPhones compared to the telegrams of old.”

As the AAP report discusses, today’s IUDs are safe even for women who have never had children (in spite of old warning labels that said otherwise). Another concern, that women who contract a sexually transmitted infection are at higher risk of getting pelvic inflammatory disease, is only a risk in the first few weeks after insertion, and so providers can test for STIs at insertion time.

Implants: the past

If you’ve heard of contraceptive implants, you’re probably thinking of Norplant, the 6 implantable rods that were offered to, and perhaps pushed on, poor women and especially poor women of color in the early 1990s. The mini-documentary Skin Deep talks to some of these women, who experienced side effects they say they weren’t warned about, and who found it easy and cheap to get the device inserted but are having trouble getting it out. A doctor explains how difficult the removal process will be; a woman on public assistance says that she knows women who paid to get it inserted and removed, but that her doctor refuses to remove it. (The same laws that provided free insertion didn’t cover removal.)

About 10 minutes in, the Dalkon Shield makes a cameo, as the women compare the two methods, saying they felt like they were experimented on.

 Implants: the present

Like the Dalkon Shield, Norplant is no longer on the market. Single-rod implants (Implanon and Nexplanon) are now available, which have milder side effects and are easier to remove.

Two hour wait in doc's office + Implanon rod removal + Lots of gauze = End of side effects.  Huzzah

This lady is happy she got her implant removed.
Photo by Mandy Lackey, CC BY-NC-SA 2.0

What now?

But still, old-fashioned attitudes are a major barrier, among both patients and providers. Take this op-ed from a doctor on Fox News. He says that while as an obstetrician he understands that IUDs are a great choice, as a father he would never recommend one to his teenage daughter. Why? He brings up issues from the bad old days, and neglects to consider that the risks of modern IUDs are far less than the risks that accompany pregnancy.

What does he recommend instead? Abstinence. In case the flaw in his logic isn’t clear, here is what the AAP’s report says about this method, which should be 100% effective with “perfect use” (compare to 99.95% for implants and 99.8% for IUDs, rates that are nearly identical for typical and perfect use in these methods):

…existing data suggest that the ["typical use"]

effectiveness of abstinence for preg-

nancy and STI prevention over ex-

tended periods of time is likely low. For

example, among adolescents reporting

virginity pledges in the National Longitu-

dinal Study of Adolescent Health, at 6-year

follow-up (wave 3), 88% had engaged in

sexual intercourse (most premarital), and

5% were infected with STIs.

They go on to recommend that providers check in with the patient at each visit to ask if they still intend to remain abstinent, and to make sure that they understand the other options available. (This includes gay and lesbian teens, because some will occasionally have opposite-sex partners.) It’s a smart attitude for doctors, and it would be a smart attitude for parents to adopt, too.

The AAP report devotes several pages to the minefield of confidentiality and consent, noting that girls are better about using contraceptives when they don’t have to explain it to their parents, but insurance billing, among other things, makes this difficult.

After all, the age when a person starts having sex, and the age when they are ready to be a parent, are typically many years apart—no matter what their old-fashioned father thinks.

 

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The rising global burden of dementia

Alzheimers-brain_shutterstock_300

“Dementia is costlier in societal terms than the other four NCDs put together” Image: Shutterstock

The World Alzheimer’s Report has just been released. The report, commissioned by Alzheimer’s Disease International and led by Prof. Martin Prince at King’s College London in the UK contains staggering, yet not well-known statistics about dementia (1,2):

- Worldwide, 44 million people are estimated to be living with dementia. This figure is estimated to rise to 135 million by 2050.

- Every 4 seconds, someone in the world is diagnosed with dementia. This figure does not include undiagnosed cases, which are common.

- Middle- and low-income countries will be the most vulnerable to rising dementia incidence over the next few decades.

- The global societal economic cost of dementia exceeded $600 billion USD in 2010, over 1% of global GDP. These costs are estimated to rise.

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“It’s never too early or too late” Image: Flickr

Dementia often tends to be dismissed as a disease of the elderly. It isn’t given the same weight as cancer or cardiovascular disease in the media, in terms of of research funding, or in the younger public’s collective psyche.

However, given the rising incidence of Alzheimer’s, and the fact that overall brain health is inextricably linked to similar risk factors as chronic diseases such as cardiovascular disease and cancer means we all need to be more aware.

The World Alzheimer’s Report focuses in on four key risk factors for Alzheimer’s disease, as found in their systematic review and meta-analysis of current evidence (1):

  1. Early life education
  2. High blood pressure in mid-life
  3. Diabetes in late life
  4. Smoking in late life

This type of information is probably going to reach few of those who are the most vulnerable to dementia – those already in poor health, with low education, and with low levels of cognitive engagement in later life. Particularly given global inequalities in dementia, which are likely to rise, it is necessary that dementia and Alzheimer’s disease are included in global strategies to reduce non-communicable diseases (NCDs). This achievement would include emphasizing the importance of preventive behaviours in later life, a time that tends to be ignored by existing recommendations.

If we can all enter old age with better developed, healthier brains we are likely to live longer, happier and more independent lives with a much reduced chance of developing dementia. With an estimated global societal economic cost of dementia of over $600 billion, and rising, the stakes could hardly be higher.

References

  1. Prince M, Albanese E, Guerchet M, Prina M. World Alzheimer Report: Dementia and Risk Reduction: an analysis of protective and modifiable factors. Alzheimer’s Disease International, 2014.
  2. Alzheimer’s Disease International. Dementia: the facts. http://www.alz.co.uk/world-alzheimers-month/dementia-facts (accessed 23 September 2014).
Category: Epidemiology, Health systems, Preventable Deaths | Tagged , , , , , , , | Leave a comment

Rare enterovirus in US children: what’s going on?

Enterovirus 71

Enterovirus 71. Image source

Recently, a mild-to-severe respiratory illness in children in the Southeast and Midwest United States has been emerging. The US Centers for Disease Control and Prevention (CDC) report that between mid-August and September 11th, 2014, their laboratory has confirmed 82 cases in six states of Enterovirus-D68 (1). This figure doesn’t include non-confirmed cases and cases tested outside of the CDC laboratory; the true number of cases is certainly higher, with hundreds of children reportedly showing symptoms.

What is Enterovirus-D68?

The culprit of this outbreak, Enterovirus-D68 or EV-D68, is a rare member of the non-polio enterovirus family. According to the CDC, it was first reported in California in 1962, but has rarely been seen in the United States since (1).

What are the symptoms of EV-D68 infection?

EV-D68 causes respiratory illness. At the mildest, the virus acts like the common cold, causing coughing, sneezing, and a runny nose. It may act like the flu, causing fever, and muscle and body aches.

A main concern is for children with a history of asthma or wheezing. These children are prone to more severe cases of EV-D68, which involves difficulty breathing and wheezing.

About 15% of cases among children have resulted in hospitalization, which is unusual and concerning (2).

Mark Pallansch, director of the CDC’s Division of Viral Diseases, stated that the number of hospitalizations reported could be “just the tip of the iceberg in terms of severe cases” (2).

Why are there so many hospitalizations?

The plain answer: we don’t know. Public health is a challenging field, where scientists and doctors have to act quickly and in real time as outbreaks unfold. Enteroviruses typically do spread amongst children at this time of year – but they tend to cause simple colds rather than surges in hospitalizations. The CDC is working hard to unravel the source of the current outbreak.

Earlier this year, we reported on an outbreak of another enterovirus, EV-68, among children in California. EV-68 was incredibly rare, but caused polio-like symptoms including muscle paralysis. Could the causes of the two outbreaks be related?

Should I be worried?

EV-D68 has been reported in Alabama, Colorado, Michigan, Georgia, Ohio, Iowa, Illinois, Missouri, Kansas, Oklahoma, North Carolina, Kentucky, and Utah (3,4). If you live in or near these areas and have children, keep an eye out for symptoms, especially if your child has asthma or a history of wheezing.

It is recommended that you take your child to the doctor if he or she develops a rash, fever, or has difficulty breathing (2). Fortunately, most cases will be self-limiting, and will only require treatment for symptoms.

How do I prevent EV-D68?

The CDC has provided a useful infographic, below:

 EV68-infographic

 

References

  1. Centers for Disease Control and Prevention. Non-polio enterovirus: Enterovirus D68. http://www.cdc.gov/non-polio-enterovirus/about/EV-D68.html (accessed 12 September 2014).
  2. Martinez M, Newsome J, Cohen E, Dyerm K, Hughes T, Biery-Colick K. 10 states report outbreak of respiratory illness in kids. USA Today [Internet]. http://www.usatoday.com/story/news/nation-now/2014/09/08/respiratory-virus-midwest-children/15269751/ (accessed 12 September 2014).
  3. Wilson J. What parents should know about EV-D68. CNN [Internet]. http://www.cnn.com/2014/09/08/health/enterovirus-d68-symptoms/index.html (accessed 12 September 2014).
  4. Shankar S. Enterovirus EV-D68, causing respiratory infection in children, reported in 10 US states. International Business Times [Internet]. http://www.cnn.com/2014/09/08/health/enterovirus-d68-symptoms/index.html (accessed 12 September 2014).
Category: Epidemiology, Health systems, Infectious disease, Time trends | Tagged , , , , , , , | Leave a comment

Ethical dilemmas of giving Ebola drugs to the people who need them most

Ebola in Guinea

Credit: European Commission’s Humanitarian Aid and Civil Protection department (ECHO). CC-BY-ND

Although the outbreak is bursting beyond efforts to contain it, and daily finds ways to reach whole new levels of scary (for example, there have been a handful of cases in Lagos, a city the size of New York), hope is on the way. We’ve been hearing about experimental drugs and vaccines for the past few weeks, some being tried in humans and others yielding results from animal trials. But so far, they haven’t reached the places in West Africa where they are most needed.

Take ZMapp, the famous “experimental treatment” that Americans Kent Brantly and Nancy Writebol received. Both survived, although there’s no way to know if it’s because of ZMapp, because of other care they received, or because they were among the roughly 50% who would survive anyway.

ZMapp is a collection of human antibodies produced (in a feat of genetic engineering) by tobacco plants. There is none of it left; the company that makes it only had a small amount on hand for testing, and says it shipped out all the doses it could spare, at no cost, filling every request it got, first come first served.

Only a handful of doses were ever available. As far as we know, Brantly and Writebol’s employer, Samaritan’s Purse, requested two. Around that time, they were treating about 17 other Ebola patients in their center in Liberia, who presumably did not get the drug.

The Wikipedia article on ZMapp catalogues seven people who are known to have received the drug. Only three are African. A pharmacist in Guinea, in an AP interview, said what we’re all thinking:

“There’s no reason to try this medicine on sick white people and to ignore blacks. We understand that it’s a drug that’s being tested for the first time and that could have negative side effects. But we have to try it in blacks, too.”

But here is the dilemma: if a drug or vaccine turns out to be harmful, have we unethically experimented on a vulnerable population? A South African researcher summed it up for the New York Times:

“It would have been the front-page screaming headline: ‘Africans used as guinea pigs for American drug company’s medicine.’ ”

NPR reported that foreign leadership of Ebola treatment may be contributing to distrust., so fear of being a guinea pig may not seem farfetched. But as the situation grows more desperate, untested drugs and vaccines are looking better and better.

Still 50 white people away?

The Onion’s take on this issue is harsh: Experts: Ebola vaccine is at least 50 white people away. (“[W]hile progress has been made over the course of the last two or three white people, a potential Ebola vaccination is still many more white people off.”)

Life nearly imitates the Onion, as the fast-tracked safety trials enroll 60 people in the UK and 20 Americans (race unspecified). If the vaccines prove safe, though, larger quantities will be sent to Africa in November, where they will be offered first to health care workers.

That will leave us with further dilemmas about how to distribute the vaccine (who gets it first when there are limited supplies?) and the possibility that, if the vaccine doesn’t provide the promised protection, people may behave as if it does, perhaps touching and taking care of loved ones with the disease, believing they are protected when they aren’t. While we can assume workers will do their best to explain that the vaccine’s efficacy is untested and its safety only somewhat known, will everyone understand? Will they feel coerced to try it? If the vaccine doesn’t work after all, a large scale vaccination program would amount to a waste of time and resources at a time when clinics are already under-staffed and over-worked.

A treatment we already have

Last week’s WHO meeting on Ebola treatments discussed vaccines and experimental drugs, but the biggest action item they recommended was using a raw material already in abundant supply in Ebola-stricken regions: the blood of Ebola survivors.

Survivors’ blood should contain plenty of antibodies against the virus; in this sense, ZMapp is essentially an imitation of it. There are downsides here, too, including the possibility for transmitting other diseases such as HIV. While it may not sound as snazzy as a newly developed drug, blood is probably the most practical treatment to roll out on a large scale.

Even with effective drugs and vaccines, Ebola treatment in this outbreak will still depend heavily on basic medical care, since so many people are sick and, with or without drugs, isolation and supportive care are essential for patients.

But maybe, with luck, this will be the last big Ebola outbreak.

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