Blogs posted for BMJ

Organ donation is an emotive topic, and rightly so

Recently, there was a very moving piece in The Guardian about a doctor’s experience of a family donating their dead child’s organs for transplant. It got me thinking about organ transplantation here in Asia, specifically in Singapore, and why donation rates there are so low.

Singapore has an opt-out organ donation policy: a 2009 amendment to the Human Organ Transplant Act (HOTA) allows for “the kidneys, liver, heart, and corneas to be recovered in the event of death from any cause for the purpose of transplantation, applicable to all Singapore Citizens and Permanent Residents 21 years old and above, who don’t have mental disorders, and who have not opted out.” Opting out of HOTA means that you are lower priority on the waiting list for an organ transplant.

It sounds rational and fair on the surface: if you want to benefit from a public good, you should be ready to equally contribute to that public good. It is actually deeply flawed. Assuming that the state is a benevolent organism under the democratic control of the people it is designed to serve, then perhaps it can be trusted make these kind of life or death decisions on behalf of its citizens. But the state is not like this in most countries in Asia, Singapore included. Singapore retains the death penalty: the legal power to end the life of its citizens. Opt-out or go to the back of the queue organ donation is another example of the state holding too much power over how citizens live and die.

The opt-out/back of the queue policy looks purely logically and dispassionately at organ donation, but this is in no way a dispassionate decision for either an individual or their loved ones to make. It’s also a matter of how far the state should be allowed to reach into the personal decisions of individual citizens. That some people cannot countenance the idea of organ donation, but at the moment of need in a life-and-death situation gratefully receive one, is not surprising and should not be legislated against.

It also doesn’t even increase donation rates that much. Before HOTA was introduced in 1987, there were approximately three cadaveric kidneys available for transplant every year. Post-HOTA, the average rose to 13. In 2015, there were 17 cadaveric kidneys available for transplant (vs. 34 the year before). Better than nothing, perhaps, but given this is an opt-out system, the results are parlous compared to those in the top five countries for organ donation—Croatia, Spain, France, Austria, and Norway, where donation rates are 50 kidneys per million population. The annual per population rate equivalent for Singapore should yield 250 cadaveric kidneys available for transplant. The disparity is similar for cadaveric livers.

The system isn’t yielding stellar results because neither the public nor the doctors are on board with it. According to transplant surgeons cited in a 2015 Straits Times piece by the paper’s senior health correspondent Salma Khalik: “one common factor in countries with a low retrieval rate is the lack of buy-in by other doctors, particularly those working in the intensive care unit.

“To be usable, a liver has to be taken from the body before the heart stops beating. This means doctors must verify brain death in a patient and alert the transplant team. Instead, doctors often just tell the family there is no hope and, with their permission, pull the plug on the life support system and allow the heart to stop.

“By doing so, perhaps without realising it, they have also pulled the plug on a patient with imminent liver failure, and perhaps another patient facing heart failure. Both might have been saved if the doctor had done the right thing by ascertaining brain death and allowing the organs to be retrieved.”

Families in Singapore are resistant too and frequently do not give consent, despite the fact that the relative concerned had not opted out of HOTA. This may stem from religious objections to organ donation, or because they don’t trust that the doctors are not simply pressuring them to make a decision for the good of the many at the expense of their relative. Earlier consultation with the family and better explanation could help overcome this distrust.

Someone who has had such a transformative experience as organ donation is highly likely to become a strong and convincing advocate for opting into an organ donation scheme, especially among their family, friends, and social circle. This kind of highly personal advocacy can be part of a range of measures aimed at educating the public, rather than pushing them to defy their religious and subjective feelings about organ donation.

Countries like Singapore looking to improve donation rates would do well to study Croatia’s model, internationally recognized as highly successful. Although it too is a system based on presumed consent, those who opt out are not penalized, and the family’s decision is always respected. A review of Croatia’s organ donation system identified a range of factors that contribute to the transplant programme’s success, including “the appointment of hospital and national transplant coordinators, implementation of a new financial model with donor hospital reimbursement, public awareness campaign, international cooperation, adoption of new legislation, and implementation of a donor quality assurance program.” The public’s positive attitude to organ donation, its solidarity, and people’s willingness to help others is also key. This kind of social solidarity cannot be created by legislation alone.

But improving organ donation rates has to start with the doctors. It means that trauma surgeons dealing with traffic accident victims, for example, have an established line of communication with the transplant surgeons who could save their patients’ lives through the loss of the trauma doctor’s patient. It means that doctors have to engage with patients long before families are faced with a heartbreaking decision to be made with no time to spare. At that moment, families need to be treated sensitively by trained, in-house transplant coordinators. With the general public, education about organ donation can be done in the waiting room of family physicians or during routine medical examinations, including a clear explanation of how brain death is determined. It can happen in schools by sharing real-life stories of lives saved through organ donation.

The anonymous doctor who described his feelings so movingly writes: “I can never forget the generosity demonstrated by a family experiencing unimaginable pain and their solidarity; their story is an example to us all and I am sure there are several families who are forever grateful for their benevolence… I cannot forget my colleagues and the support they gave to the family, myself and each other. The night demonstrated how each person is one small part of a team without which no ward or hospital would function.” Such heartfelt and personal advocacy could never come about from a system that pushes its citizens to remain in an opt-out system, or else. Organ donation is a highly emotive topic and deserves a response that takes human emotion into account.

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Blogs posted for BMJ, Public health issues in Asia

What radiation risk? I’m going to Japan for the clean air

Chatting to fellow parents about summer holiday plans at a recent school event, I was asked by a mother whether I was worried about radiation levels in Japan. Both her family and mine are travelling to Japan this summer, neither party travelling anywhere near Fukushima. I told her that I was actually looking forward to the clean air and getting away from Hong Kong, giving us all a rest from the relentless impact of the Hong Kong’s hideous air pollution.

She, on the other hand, told me she and her friends were worried about the potential health impact of spending a week in Japan. This is a commonly held view here, and I was reminded of something I learned about risk during my MPH course: it’s not the risk, it’s the risk perception that matters.

Recently I was delighted to discover Safecast, a “global sensor network for collecting and sharing radiation measurements to empower people with data about their environments.” It is an excellent example of citizen science, created in the wake of the Fukushima nuclear power station accident after the 2011 Tohoku earthquake and tsunami in Japan. When the government and other authorities were clearly not going to provide the information people needed to determine the risk to their family and friends, a group of amateurs found each other via the Internet and did it instead. The project then grew into probably the most comprehensive source of radiation level data in the world, as Joi Ito, director of MIT’s Media Lab and co-creator of Safecast explains in this TED talk.

One of the site’s FAQs is, not surprisingly: is it safe to visit Japan? The answer might surprise some Hong Kong travellers: “Parts of Fukushima are highly contaminated, but in most of the rest of the country radiation levels are no higher and sometimes even lower than other major cities around the world. From our own measurements we can say with confidence that Tokyo and Los Angeles have similar radiation readings and that the levels in Hong Kong are even higher than those in Tokyo.” This can be partly explained by higher background levels of radiation in both LA and Hong Kong compared to Tokyo before Fukushima exploded.

So, it turns out that in Hong Kong, not only do we have pollution that is causing serious and widespread illness and shortening people’s lives (you can watch the morbidity and death toll ticking up here on the Hedley Environmental Index) but we also have radiation to contend with. Another aspect of Hong Konger’s distorted perception of risk is that the Daya Bay Nuclear Power Plant, just over the border in mainland China, has been running for nearly 30 years and scarcely gets a mention in the media or conversation about radiation risk from one year to the next. Given China’s less than stellar track record at keeping Hong Kong informed of any public health dangers emanating from across the border, we can’t assume that no news is good news. Hopefully the citizen scientists at Safecast are continuously monitoring radiation from southern China too.

 

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Blogs posted for BMJ, Public health issues in Asia

How many cases will it take for policymakers to realize there is a HIV problem in Hong Kong?

Announcing the most recent HIV statistics for Hong Kong, the Department of Health’s Centre for Health Protection reported 154 new cases from January to March this year: in effect, almost every day two more people became infected with a preventable disease that requires lifelong adherence to a drug regimen in order to stay alive.

In my last blog post I talked about how Hong Kong’s schools are failing to teach young people even the most basic facts about safe sex, let alone giving them a forum to safely discuss and learn about sexuality. This shows in the sexual practices of young people: research by local NGO AIDS Concern last year, for example, found that among 121 young people aged 14-21, 40% did not use condoms while having sex.

Another consequence of failing to give young people proper sex and sexuality education is low awareness of the risk of HIV infection and the perpetuation of stigmatizing social attitudes towards lesbian, gay, bisexual and transgender people, and towards people living with HIV. For almost all of the new cases for which there was a confirmed transmission route, unprotected sex accounted for all but one case (which was via injecting drug use).

In a recent conversation with AIDS Concern’s chief executive Andrew Chidgey, he explained that stigma and ignorance continue to make their outreach and education work difficult. “Some people don’t want to get engaged in knowing about HIV. It’s not something they want to be associated with,” he told me. When AIDS Concern staff talk to people who get tested and to people living with HIV, they find that most got infected through unprotected sex. Chidgey attributes this to a number of reasons: people aren’t as aware as they have been in the past about the risks and dangers of unprotected sex; complacency about treatment in the era of antiretroviral therapy; and a lack of information. “The sex education that’s going on is still very limited to reproduction and not about relationships and sex,” he says.

Particularly worrying is that 84 out of the 154 newly reported cases were among men who have sex with men, continuing a trend that has emerged in recent years. The CHPs’ Consultant (Special Preventive Programme) Dr Wong Ka-hing admitted to local media that it has so far been unable to develop an effective strategy to address the spread of HIV among the gay community. The CHP is conducting a study among gay men to try and better understand the prevalence of HIV among the gay community.

I do hope they work closely with local NGOs like AIDS Concern, which clearly have their finger more on the pulse of the LGBT community. The organization is already collaborating with the Chinese University of Hong Kong to research into stigma associated with HIV and discrimination experienced by people living with the virus in Hong Kong. Initial findings using the widely respected People Living with HIV Stigma Index found that half of the 291 survey respondents had “internalized stigmatizing beliefs about their identity as a person living with HIV.” Over a quarter had “experienced insults, avoidance or discrimination from general healthcare workers” at accident and emergency units as well as general out-patient clinics.

Clearly the Centre for Health Protection needs to pass on some basic facts about HIV infection to their colleagues on the frontline of health care delivery in Hong Kong. But if they really want to stop the upward trend of HIV infections over the longer-term, they will need to step out of the health sector and engage with their government colleagues in the Education Bureau. It’s time they pointed out the human cost of continuing to shy away from implementing proper, evidence-based sex and sexuality education in Hong Kong schools.

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Blogs posted for BMJ, Public health issues in Asia

The disease of poverty is a doctor’s business everywhere

“If you miss the poor, you’ve missed the point,” said Dr. Margaret Mungherera in her recent inaugural speech as incoming president of the World Medical Association. She urged doctors around the world to advocate on behalf of the poor. If any delegates from the Hong Kong Medical Association, a WMA member, were present I do hope they were listening.

One fifth of Hong Kong’s population lives below the official poverty line. This was set for the first time in September 2013, at 50% of median monthly household income before tax and welfare transfers.

Hong Kong has one of the highest per capita GDPs in Asia and ranks 11th globally, yet its Gini coefficient, a measure of income inequality, indicates it has the worst income disparity in the developed world. The announcement of the poverty line and that there are 1.3 million people living below it has been big news in Hong Kong, but it hasn’t generated the sense of righteous outrage that such a statistic should.

The toxic effects of poverty on health have been widely documented. Poor housing, food insecurity, inadequate access to health care, the physical and psychological stress of coping with the daily indignities that poverty imposes: these are all well known to be associated with higher rates of all the major non-communicable diseases. The health impact on children of growing up in poverty is particularly deleterious.

Since Hong Kong’s poverty line has been announced, the social welfare sector has been very vocal and highly visible in the media, asking what action will follow. But despite the well-established links between poverty and ill-health, any organized response from the local medical community has been conspicuous by its absence.

Unless they are only treating the well-to-do and middle class patients, the medical professionals who treat Hong Kong’s sick, the doctors and dentists who routinely screen all Hong Kong children through government health clinics, must see the health effects of poverty every day, but their professional associations are saying little or nothing about it.

There are ways to tackle poverty. Toronto family physician Dr Gary Bloch treats poverty itself as a disease, for example. Physicians in some parts of the US routinely screen for poverty along with other health risk factors. On a national scale there are many societies that have successfully narrowed the inequality gap. None will say they have a perfect solution, or achieved what they have by making easy choices, but unlike Hong Kong, neither do these developed countries have people living in 20ft2 cage homes, one in five children living in poverty, and one in three elderly people struggling to survive without a pension. Nor do they have the economic and social burden of the health consequences of allowing such a shameful state of affairs to exist.

The World Medical Association may have been speaking more to developing countries in its call to doctors to advocate for the poor. Dr. Mungherera noted that almost half of the world’s population survives on less than a dollar a day, but she also pointed out that there are poor people everywhere. “As physicians, we have been given the privilege to do something about it,” she said. “And we can do so as individual physicians, but we can do even better through organized medicine, as national medical associations and as the World Medical Association.”

Hong Kong’s income disparity may be an extreme example, but how societies like Hong Kong tackle poverty holds lessons for middle-income countries climbing up the development ladder. These countries are already facing the dual burden of infectious and non-communicable diseases, but the latter are not just the diseases of affluence. They will also have to find ways to deal with the diseases of urban poverty. I hope they do a better job than Hong Kong and have a medical community more willing to stand up and be counted in the fight.

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Blogs posted for BMJ, Public health issues in Asia

Heads: Hong Kong babies lose. Tails: the formula companies win

It’s been a busy couple of years in Hong Kong for the international baby formula companies. As soon as the Department of Health announced it had set up a Taskforce on Hong Kong Code of Marketing of Breastmilk Substitutes in June 2010, the industry quickly mobilized to get ahead of any potential for their self-interests to be threatened.

The Hong Kong Infant and Young Child Nutrition Association, set up by the industry in May 2011, may sound like it has the interests of Hong Kong’s children rather than profits at heart. But it has since harnessed every opportunity to promote its member’s interests, and this year a so-called crisis of supply for local parents has been a bonanza for the industry, giving them many opportunities to promote their products through media assurances that they will support government efforts to maintain stable supplies.

In a clear effort to get ahead of any potential restrictions on advertising, in the unlikely event that the Hong Kong Code should ever become anything more than a suggestion for voluntary action, for the past two years the international formula manufacturers have been plastering their tacky images of ‘brainy’ children across public transport and TV screens. It is impossible to watch the terrestrial TV stations or take a bus or underground train in Hong Kong without seeing their advertisements.

But overshadowing their own marketing efforts is a bigger force that as been at play this year: massive demand for their products from mainland Chinese shoppers and parallel importers who have flocked to the city to buy formula, in favour of buying home-grown brands.

Domestic Chinese manufacturers are still feeling the impact of the melamine scandal that killed six children and sickened thousands more in 2008. Freelance parallel traders look to make a bit of extra cash hauling bulging luggage trollies from Hong Kong back to the mainland, having cleared the pharmacy shelves of formula in the bordering areas. They have been a thorn in the side of local residents who bemoan the impact on their lives and there have even been tense scuffles and protests.

This demand for imported formula came on the back of equally burgeoning demand for Hong Kong’s maternity ward services. Hong Kong-born babies obtain right of abode, regardless of the abode status of their parents. Giving birth in Hong Kong was a neat way for mainland parents to circumvent the implementation of the One Child Policy or to have a back-up plan in case they don’t like the educational and health options for their children open to them back home: right of abode confers access to free, high-quality healthcare and education in Hong Kong.

The doubling of demand for maternity beds in 2011 when nearly 44,000 women mainland women gave birth in Hong Kong without any concomitant change to supply, outraged the local population, and Chief Executive C Y Leung took the arguably unconstitutional step of barring all mainland births unless the father is a Hong Kong permanent resident.

It was against this backdrop that in March 2013 the government introduced a limit on formula exports of two 900g tins with the aim of protecting supplies for local women. The government also announced it was engaging with the formula manufacturers to ensure that local demand could be met.

What a windfall for the formula industry: the fact that the Hong Kong government helping them to avoid formula sales to mainlanders in Hong Kong cannibalizing their business over the border is a side benefit. The real benefit is the tremendous endorsement of its product from the government’s top health officials.

The message they were sending to parents is: here is a product that’s so precious, so invaluable to the well-being on our Hong Kong babies, that we will guarantee your supply. All this endorsement came without a single word from either the Food and Heath Bureau or the Department of Health about the real risks associated with formula feeding. This policy was also at the expense of the government’s own evidence-based policy of promotion breastfeeding. No amount of advertising dollars can buy you that kind of credibility. And given that Hong Kong’s lifetstyle habits are often emulated over the border, the ripple effect of this credibility into the mainland market is potentially enormous.

It seems the party is coming to an end, however. Secretary for Food and Welfare Ko Wing-man, speaking on a radio show on September 24 2013, said that the government was pondering abandoning the two-tin limit, if they were reassured that there was enough supply for local mothers.

Currently the industry is required to maintain 1.65 million cans of baby formula a month for local parents: all this formula for the babies and young children of a seven-million strong population. The formula industry’s spokesperson said the industry would welcome lifting the quota and that it had no problem maintaining the required level of stock.

So for Hong Kong’s legion of formula-fed babies, it seems that it’s heads they lose, tails the formula industry wins. Meanwhile the government’s guardians of public health continue to squander the opportunity to reach out to new and prospective parents with information about breastfeeding and warnings about the risk of using formula. The government quietly ignores its own stated public health goals for the support of big business and a quiet life without complaints from parents.

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Blogs posted for BMJ, Public health issues in Asia

Why are we so resistant to calling sugar the enemy?

Sparing developing countries the fate of obesity-associated diseases that plague the developed world is currently one of the most pressing global public health issues. Before we export wholesale the ‘follow the food pyramid, exercise, and eat no more calories than you burn’ approach, it may be time to review how effective it actually is. The answer is: not very, if a recent study by the Institute for Health Metrics and Evaluation at the University of Washington, showing that the obesity rate continues to climb even as Americans are exercising more, is anything to go by.

I recently came across the work of Peter Attia (like a lot of interesting people, I came across him via his TED talk) on obesity, diabetes and insulin resistance. He is currently exploring a novel hypothesis: that obesity is not a cause of diabetes; rather, it’s a symptom of a much deeper underlying problem. Turning conventional wisdom about diabetes on its head, Attia asserts that adding fat cells could be the lesser of two metabolic evils for a body being bombarded with excess insulin and faced with a choice between using it or storing it.

Attia is now in a team of researchers looking at the causes of obesity from multiple angles, but his, that refined carbs, the culprit of insulin resistance are the problem, is one that makes a lot of sense. Attia is the co-founder of the Nutrition Science Initiative, a non-profit research organization in San Diego. The other co-founder is Dr Gary Taubes, who recently wrote extensively and eloquently in an essay for the BMJ on how little real science is behind the energy imbalance theory of obesity and on the endocrine hypotheses that have been lost in the mists of time.

Obesity is not the only health issue that stands to benefit from a better understanding of the causes and effects of insulin resistance. As a public health researcher and writer, I study the factors that make it difficult for so many women in high-income countries to successfully initiate and sustain exclusive breastfeeding. There are many factors at play, from hospital practices to the attitudes and behaviours that travel along women’s own social networks, and not least the pervasive onslaught of propaganda from the formula industry. But recently published research into the role of insulin in milk production points to sub-optimal glucose metabolism impairing breastfeeding. The research adds to the body of knowledge and clinical trials now underway to test whether diabetes medications can be used to regulate insulin action in the mammary gland. However, the ideal approach is a preventive one, says Dr Laurie Nommsen-Rivers, a scientist at the Cincinnati Children’s Hospital Medical Centre and corresponding author of the study. “Modifications in diet and exercise are more powerful than any drug.”

It’s heartening to see Taubes’ work in the BMJ and Attia garnering the massive publicity that a TED talk can bring. Probably the most famous critic of sugar is Robert Lustig and his work on the health impact of fructose, and there are voices within the medical community trying to get the dangers of sugar on the public health agenda, such as Laura Schmidt and Clare Brindis (see the opinion piece from Schmidt on CNN.com and Nature for the underlying academic paper). Still, it is fat, and saturated fat in particular, that is touted as the main dietary public enemy, and the all-pervasive presence of sugar and refined carbs does not attract similar criticism.

There are pharmaceutical interventions for diabetes and obesity, all with their own side-effects and none offering a cure. Yet there are simple, side-effect free dietary changes that can tackle the underlying issue of insulin resistance. They aren’t lucrative for anybody, except perhaps whole food retailers. Neither the pharmaceutical industry nor the agri-industrial complex will be promoting these changes any time soon. But the public health community can, and arguably should.

Jane Parry is a Hong Kong based public health and medical journalist and researcher.

24 July 2013

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Blogs posted for BMJ, Public health issues in Asia

Why real-name HIV testing won’t fly in China

Two interesting documents that came across my desk this week got me thinking about how different HIV-related human rights look depending on where you’re standing. The first was a press release from UNAIDS, UNDP and the International Commission of Jurists about the first-ever judicial dialogue about HIV, human rights and the law. The second was a news story from the China Daily about legislation recently passed in Guangxi Zhuang autonomous region requiring real names to be used for HIV tests.

The authorities in Guangxi, including doctors charged with the task of treating people who are living with HIV, and keeping the epidemic under control, have sound reasons for wanting to use real-name testing. They say it will reduce loss to follow-up: it will be easier to track people down and convince them to get treated. It will also contribute to better public health policymaking because the region will have a more accurate picture of its HIV epidemic.

No it won’t, AIDS NGOs say, because people won’t come forward for testing in the first place, never mind being lost to follow-up. Instead they will at best do home self-testing, which is not accurate and could leave them with a positive test result and no clue what to do next.

It’s a typical example of how public health policy often serves the needs of the health system instead of the patients. One of the main reasons patients prefer anonymous testing is that they want to know their status but have no inclination to share that information. Once the information leaks out of the medical system, all too common in a society where individuals’ rights are routinely trampled on by the state, people living with HIV are subject to widespread stigma and discrimination.

A 2009 survey conducted by the China Stigma Index found that over 49% of people living with HIV interviewed had experienced discrimination related to their HIV status. Over three quarters said their family had suffered the same discrimination. Pregnant women living with HIV are routinely advised to terminate their pregnancies: 12% of the respondents reported being pressured into having an abortion. The children of 9% of respondents were forced to leave school regardless of their own HIV status. Discrimination by medical staff, teachers and government officials was rampant.

So I think it’s great that eminent judges from the Asia Pacific region gathered to discuss what they can do to provide a supportive legal environment for people living with HIV and to protect those particularly vulnerable to being infected. The conversation has to start somewhere, and there were Mainland Chinese judges participating in this ground-breaking event.

But for people on the receiving end of public policy about HIV, it will be a long while yet before the target of zero discrimination is reached. And until that time, the Guangxi authorities would do well to turn around in their minds the conundrum of how to combat HIV and look at it from the perspective of their patients. Until they can guarantee that those who test positive won’t feel the chill of stigma from the very same health care workers responsible for testing and treating them, and until their communities are educated out of shunning them, real name testing is still just a good idea in theory.

 

Jane Parry is a Hong Kong-based public health and medical journalist and researcher.

 

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