Fearing Treatment: Despite increased accessibility to diagnosis and care, denialism obstructs progress

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In lecture on Tuesday, Jody Ranck, Director of Thought, Policy, and Advocacy in the mHealth and UN Foundation, spoke about the breakthrough work he has done with the Grameen Organization to improve health conditions in developing nations. His success in this effort can be attributed to an innovate approach that focuses on equalizing access to information about health conditions and treatment locations. I went on the Grameen website and was impressed with the MOTECH initiative in Ghana, aimed at helping women access prenatal and antenatal information.

When Ranck began describing breakthrough technologies using mobile imaging, such as MIT's low cost mobile phone eye test, classmates expressed the concern that such technology could lead to the degenerating value of visits to a real doctor. Some argued that this competition with technology could affect a doctors paycheck, changing the whole nature of medical care. Ranck and Professor Roman argued that this situation would probably never exist because of the high value that people place on face-to-face interaction. In my opinion, even if technology did advance far enough to replace visits to the doctor, this would be completely beneficial and legitimate, particularly to the poorest of the poor.

In his essay Spheres of Justice, Professor emeritus at Yale University and leading social theorist Michael Walzer argues that medical care is already too privatized. He states that access to medical care is linked to the dominant good of wealth. Therefore, it is subsequently the rich who disproportionately receive care, even when their conditions are not as serious as those living in poverty. Even in the United States, poor people often go untreated to avoid the copayment in a doctor's office for their diagnosis. This situation would only be magnified in a third world country, where doctor visits would not only be expensive, but also inaccessible as the closest clinic might be miles away from the subjects village. 

To me, the ability of mobile phones to provide free and equal access to diagnosis (regardless of the impact on the medical profession) is nothing more than the enactment of justice. This type of technology is the embodiment of Walzer's theory; it separates the good of wealth from the service of care, two entities which should not be linked. Health is too valuable an asset to be "awarded" to those who can afford it. And, often, the poor are the members of the community who are in the most desperate need of care. Despite criticism from angry doctors, the Grameen Foundation is working to provide diagnoses to the members of the community who need it most.

But what happens if the diagnosis reaches people, but they fear treatment? What if they are too afraid to get diagnosed in the first place? What if the government has attached such a negative stigma to a certain disease that people are terrified to access the care they need? Although we would like to believe that a government so tyrannical could only be hypothetical, we would be wrong. 

There is currently an AIDS crisis in South Africa, in which the government has attached such a negative stigma to HIV that people fear diagnosis. Nicoli Nattrass, a Professor at Yale, spoke on the MacMillan Report on April 19th about the tragedy of AIDS denialism in South Africa. Her interview is below:

She explains that the refusal to provide antiretrovirals for AIDS victims was not a cost-related issue as the government had stated to the public. The basis for this refusal was drawn from a certain set of theories that AIDS did not exist, and that if it did it was harmless. The President and the Health Minister colluded to deny access to treatments. Although treatment has improved today, South Africa still has more HIV positive people than any other nation in the world.

Around the 12 minute point in the interview, Nattrass discusses the issue of disclosure, and the fact that many South African people who are HIV positive are  resistant to admitting their condition, even to family members, for fear of rejection. 

In a report in The Economist called "A Doctor in Your Pocket," Zinhle Thabethe expands upon the problem with denialism. She states that "So great is the stigma attached to the disease that some four-fifths of victims in the region will not venture into their local clinic to get an HIV test. Across South Africa perhaps a quarter of the population is HIV-positive, but fewer than 5% know their status." Enraged by these statistics, the article explains how Thabethe turned to the mobile phone as a solution to the crisis. Her "iTeach" program sends out millions of messages per day to people around South Africa encouraging them to call AIDS hotlines, or visit their local clinics to get tested. iTeach even does this in different languages, specialized for each community!

The article explains how mobile health (mHealth) is increasing awareness all over Africa. In Uganda, a

 text based quiz called "Text to Change" raises AIDS awareness, and has brought a 40% increase in the

 number of people getting tested. In Kenya, electronic health records are being set up through people's

mobile devices, enabling doctors to more effectively identify and treat AIDS patients. This seems like

 an extremely effective and necessary program, especially given Ranck's description of the current flaws

in the patient identification systems.

The article also describes incredible tracking technology based on sophisticated software that."can 'crawl' the web and look for press reports in many languages that point to the outbreak of an unusual disease." Google actually has a program very similar to this, which predicts flu outbreaks around the world.  It is easy to see how a similar initiative could be implemented for HIV detection. 

It is certainly commendable that technology can be used to spread information and predict disease patterns. In my opinion, these breakthroughs are equalizers for medical care, defying Walzer's wealth/care dilemma in society. In many cases, they provide free alternatives for the poor to gain access to vital medical information.

However, a focus on the serious problem of denialism in nations such as South Africa lends credence to the idea that an important piece of the puzzle is still missing. Technology could do more. In developing nations, there must be mobile, or online communities that allow people with diseases to connect and share information. Jody Ranck addressed the practical applicability of such programs when he explained how the Patient to Patient network allowed people with the rare Lou Gehrig's disease to connect and share information via the internet. He gave this as an example of the power of "recombinant" innovation. In other words, we can use existing resources to create new opportunities for people with diseases. 

I think this type of community would have incredible implications for AIDS patients in South Africa. We can use Facebook to connect HIV positive citizens in South Africa so they no longer have to fear diagnosis, or live in silence. Facebook could also be used to rally people around events, such as demonstrations or parades to raise AIDS awareness and promote openness. 

South African AIDS victims openly admitting their condition to fight for care

I imagine the creation of "SMS Support Groups" where patients can exchange numbers, receive free text counseling, or anonymously send concerns. I see the development of awareness blogs, and online sharing resources, like the Patient to Patient program. Such programs could also be targeted at specific subgroups in an HIV positive population, such as rape victims and homosexuals, who often contend with harsh discrimination and societal rejection. Ultimately, information is only the first step. True support, community, and change in corrupt government must be the second. I believe technology can achieve this as well.