Saturday, December 31, 2011

Top 10 HIV and ethics stories for 2011

I was looking on the web today hoping to find a top-10 list of bioethics stories for 2011. It is time of the year for such lists, and you would think that someone would be busy compiling bioethics stories of global significance, like whether extremely obese kids should be removed from their parents, the identity issues raised by face transplants or those pesky animal-human hybrids. Alas, I can't seem to find anything. There is always the Top 10 Evil Human Experiments, but beside the question of how these are determined (is there an Academy of Evil?), this is not specific to 2011. Of all places, IRIN/PlusNews, the humanitarian news and analysis service of the United Nation's Office for the Coordination of Humanitarian Affairs, has put out a top 10 list of the HIV/AIDS stories of 2011. And we can go with that, since the global significance of HIV/AIDS, and it only takes a certain degree of tweaking to turn it into an ethics list. It is in no order of importance:

1. HIV/AIDS turns 30. In June 1981, the CDC published a report in its Morbidity and Mortality Weekly Report (MMWR) about cases of what would later be called AIDS. Despite three decades of research and program implementation, both often hindered by politics and alternative public and private priorities, millions continue to be infected by HIV and die of HIV-related causes each year, particularly in low-resource settings like sub-Saharan Africa. How many died who could have been saved during this period, were it not for stigma associated with the condition and the stubborn preference among the world's wealthiest nations for military rather than health-related expenditures?

2. ARVs as prevention. Prior to 2011, there was already some evidence that being on antiretroviral treatment reduced the risk of a HIV-positive person transmitting the virus to others. The HPTN 052 study, a randomized controlled trial with sero-discordant (i.e. one partner HIV-positive, the other not) couples sealed the deal in 2011, indicating a 95% reduction of risk. The real ethical challenge now is implementation: should we target antiretrovirals for prevention purposes at those most likely to transmit the virus? How is this fair to those (such as children) who need such treatment but are unlike to pass it on to others?

3. AIDS funding. Research breakthroughs like the HPTN 052 study come at a painfully ironic time: just when real progress is made with HIV prevention research, we have an economic downturn that seriously threatens funding for studies and initiatives. The Global Fund for HIV/AIDS, Tuberculosis and Malaria just ditched its round of funding for 2011-2013, citing lack of sufficient contributions from supporting countries. What does this mean, ethically? Over the last decade, there has been a tremendous increase in the numbers of persons gaining access to anti-retroviral treatment. Cutting into programs could mean cessation of treatment, with serious potential impact on individuals and public health (in terms of rise of drug-resistant HIV strains).

4. Disappointing HIV prevention trials. The idea of giving antiretroviral drugs to HIV negative persons in order to prevent them from acquiring HIV has been kicked around for awhile, but 2011 has been an awful year for this line of research. Last year, the CAPRISA microbicide study looked very promising. But this year saw the crash and burn of two important studies (FEM-PREP and VOICE), tossing the whole pre-exposure prophylaxis approach to HIV prevention into serious disarray. Besides, if you want to (ethically) do a study with those exposed to HIV infection, doesn't HPTN 052 now imply that you ought to provide antiretroviral treatment to their partners? The mind boggles.

5. Gaffe prone politicians. Yes, this was on last year's list. It is still allowed, as long as you come up with fresh gaffes, and politicians are all too happy to help. Helen Zille, premier of the Western Cape (South Africa) apparently aimed for the title of most gaffe-prone this year. After stating that all HIV positive persons who knowingly infect others should be charged with attempted murder, she came up with a spectacular encore: the creation of an HIV lottery of sorts, where you get a chance of a cash prize if you get tested for HIV. For those not ready to regard these as gaffes, there is always Christine Ondoa, Uganda's new Minister of Health, who claimed in August to have known three persons cured from HIV by prayer. Top that one.

6. Anti-gay legislation. Anyone can make a gaffe. But attempting to make laws that discriminate against persons at heightened risk for HIV on the basis of sexual orientation is another matter. In sub-Saharan Africa, there is a perception that being gay is 'anti-African', as if same-sex orientation would be a Western import along with Volvos, Ipads and hot yoga. Mindless prejudice tarted up as defense of traditional values is nothing new or especially African, but the ferocity of the denial, as well as its negative public health consequences in the midst of an epidemic, might end up having a special African character. But not in a good way.

7. Threats to generic ARVs. HIV is tricky, and it takes a great deal of research investment to create drugs to control it. Those with the deepest pockets -- Big Pharma -- are most likely to develop antiretroviral drugs. While having cheaper generic versions of these drugs are in the interest of poor individuals and nations, it is not in the financial interest of the multinational corporations concerned. 2011 saw conflicts between generic ARV manufacturers in India and European Union, where the EU is widely seen as not being on the side of the angels. In 2012, mathematical modelers should examine the 'persons vs. patents' consequences of whatever policies come to pass.

8. Contraception and HIV risk. Some philosophers wonder if our urge to have children has any rational or ethical basis, but most take this conception as an unquestionable value. But in regions where HIV is highly prevalent, how to conceive without the mother and child risking HIV infection? A condom reduces risk of both HIV and conception. In 2011, a study suggested that a popular contraception drug (Depo-provera) increased risk of HIV acquisition and transmission. Back to the drawing board for researchers perhaps, but in the real world, couples continue to be torn between conception and HIV risk.

9. Medicines Patent Pool. As the IRIN/PlusNews report puts it, 'The patent pool was established in 2010 by the international health financing mechanism, UNITAID, and aims to stimulate innovation and improve access to HIV medicines through the negotiation of voluntary licenses on medicine patents that enable generic competition and facilitate the development of new formulations.' Quite a mouthful, but the point (see #7) is the impact this initiative has on patient access to HIV medicines in actual practice. Gilead should be commended for dipping its toe into this new pool in 2011. We will see if other big pharmaceutical companies follow suit.

10. New HIV targets. Yes, it is easy to get cynical about ambitious targets set by international health agencies, when you consider they rarely if ever get met. In June, the United Nations came out with the language: 'Zero new infections, zero stigma and zero AIDS-related deaths." On the face of it, a bit ridiculous: really, zero? Can we believe that any more than zero-teenage pregnancies, zero-drug abuse, or zero-drinking and driving? In reality, it is more a rallying cry or slogan than a goal. Goals have numbers on them, and the numbers are generally not 'zero'. Doubling the numbers of those on ARV treatment, halving TB-related deaths among HIV positive persons, bringing mother to child transmission of HIV down towards zero, and increasing prevention options among the vulnerable are valuable goals. This may be deja-vu for resource poor countries in Africa, and in an economic downturn the probabilities are altered. But it is better to have targets than none at all, as long as there is some commitment to pursuing them. Something like New Year's resolutions?

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Monday, December 19, 2011

Ethically dubious business practices at Boingo

This is a post about ethics, but not bioethics.

On my recent trip to Madagascar, I needed to get online at airports in order to do email and surf the web, in preparation for the planned bioethics and public health ethics workshop at the Institut National de Sante Publique and Communautaire in Antananarivo. So I signed on for a 'pay as you go' plan with Boingo, a company that enables you to gain access to internet hotspots at a price. You can find Boingo hotspots in airports from Malawi to Moscow to Jakarta. But the company, as I later found out, charges you outrageous prices for every access; has an app that facilitates without mentioning the precise financial implications of doing so (basically draining your bank card); intentionally makes unsubscribing to the service an ordeal, i.e. in my case a greater-than-one-hour wait on the customer service line. I was finally able to cancel my account, after the customer service representative offered that I pay 'only' about half of the bill that I was smacked with. So they made a juicy profit out of services I hardly used, and I am not alone in this. I wonder how those in lower-income countries, with undoubtedly less resources to extract themselves from the practices of dodgy companies, fare in such cases.

Amazingly, the company is celebrating its 10 year anniversary. If a research institution was found to treat research participants as Boingo treats its customers, heads would likely roll. I guess this is a difference between research ethics and business ethics: the former still clings to old-fashioned ideals like respect for persons, transparency and accountability. The latter is happier with 'buyer beware.'

Well, I feel somewhat better now. Back to global bioethics issues soon ...

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