Written Tuesday, August 21, 2007

Early this morning our team traveled to Vulindlela, a 90 minute drive outside Durbin, South Africa. I wanted to see first hand Caprisa, a combined treatment and research organization several U.S. organizations contribute to.

It is the epicenter of the HIV/AIDS epidemic. Vulindlela is a community of 400,000 people, but it appears highly rural and extremely poor. Most of the people speak Zulu.

I met Nkosi Sondelani Zondi and Nkosi Nsikayezwe Zondi, two impressive traditional tribal heads who became alarmed by the number of funerals they were attending and concluded that the very survival of their community depended on doing something. They invited researchers, community organizations, community leadership and health service providers to establish a partnership that would combine treatment with research. The result is a unique place where over a thousand people are getting ART (Antiretroviral Therapy) treatment and important research can be conducted.

The feeling the chiefs had about survival being on the line was born out in surveys done by the research staff at Caprisa. HIV prevalence in pregnant women has steadily been increasing. Among pregnant women 32.4% were HIV positive in 2001. By 2005, more than 42% tested positive. The rate fell to 39.4% last year.

Among the entire population age 20 to age 29, more than 46% are HIV positive. In this area, half an entire generation is infected.

What I learned

I’m not going to write a lot about Caprisa; suffice to say, it’s remarkably valuable, run by dedicated brilliant people and constitutes a unique partnership with the community. You can read more detail at the Web site (www.caprisa.org). What I want to focus on is what I learned by talking to the patients, doctors and chiefs.

I had a candid conversation with a fellow I’d say was in his mid-twenties. He tested positive in 2002 but kept it a secret until 2005 when he was, in essence, forced to tell his secret. He had applied to attend medical school in Cuba. His application required testing. In the process he had to reveal the secret he had kept. He described the combination of fear and relief he felt. The revelation felt like the end of not only his dream to be a doctor, but also the end of his life. He described the painful process of overcoming the dark hopelessness he felt. He’s doing better now. “I have more years to live and I want to do good things with them,” he said.

“Why,” I asked, “are men so much less willing to get tested?”

“They are scared,” he said. “Or, they think HIV occurs because of where you live.”

I was quite surprised by the thought that after all this time there are still a lot of men who don’t see HIV tied to behavior. The researchers confirmed many have misconceptions and skepticism that cause them to avoid testing. That adds some light on why women get tested 2.6 times more often than men.

    

The more I learn about the behaviors surrounding this crisis, the more complex it seems. This is  extraordinarily complicated sociology.

Dr. Salim Abdool Karim, the head of CAPRISA, told me women have their share of misconceptions. He told me of a study he had conducted where he asked women if they thought they were vulnerable to being infected; 32% said they were. When asked if they thought their partner was in danger, 78% said yes. There is an implicit admission inherent in those answers. The women surveyed clearly know their partners are having sex with multiple partners but don’t see it as a threat to them.

Salim told me part of the problem can be attributed to the policies of apartheid. The black populations were forced to live in specific areas often far away from their work opportunities. The consequence was that they would rarely see their spouses/partners. In many areas it was common for four or five men to share what they call a “town wife.” While they were away from home, a worker would receive food, company, comfort and sex. In return, he provides a portion of the woman’s support.

It does not take much imagination to construct the algorithmic progress a virus can make in such an arrangement. Especially if a significant number of the women left at home are engaged with multiple partners.

In another interesting project, CAPRISA found 86% of new infections were among people with stable relationships; married or long term relationships. Researchers characterized the actual viruses and found in 25% of the cases, the female got the virus from a male other than her partner.

I asked several of the patients I talked with if they had any sense that women they know were more selective about their partners if they suspected they could be HIV positive? Their responses did not give me confidence it was so.

In all our research, we need to understand better the combination required to help people change their behavior. This work is about changing hearts. The status of a nation is defined by the aggregation of their hearts. When a heart changes, a nation changes in a small way with it.

Comments

Human nature precludes us from perceiving that a danger to others is also a danger to us personally. Your sited figures demonstrate this mindset. If 32% of the people feel that they are personally in danger from HIV infection, but 78% felt that their partner was in danger from the same infection, then 46% of the people are in personal denial. Would education of the treat help? Sure, but human nature still comes into play with the “It can’t happen to me” mindset.

Unless educated, and with the education and ramifications reinforced regularly, mankind tends to ignore threats. Even when man sees manifestations of the problem all around them, unless the people in charge, the people that the common man looks to for guidance, step forwards and regularly reinforce the message of the danger, mankind ignores the danger as he plods on with daily existence. The Powers That Be must beat the warning drums loudly and often to get their message across to most people.

Your personal tour of South Africa probably personally saved a few lives, your tour is “local news” in South Africa that may help a few more people become and remain aware of the dangers there. And for that I thank you.

When you get back home, please beat the drum and get the people of the US to listen to your voice of authority. Perhaps, should Pandemic Flu or other dangers threaten the lives of the common man, your increased personal presence and message will help more of our citizens prepare ahead of time, and save more lives. Saving others’ lives is perhaps the biggest reward anyone can get in this lifetime. Telling them to prepare now, in times of plenty before the storm hits, is perhaps the biggest action you can do in this life for others, and for yourself.

Thanks for caring for the health and well-being of everyone, and everyone will thank you someday, in some way.

Posted by: Scott Jones | August 23, 2007 at 03:42 PM

I guess in a nutshell you could say that "ignorance kills".

When you offer the unvarnished "truth" and a means to help people understand on their level they can work miracles.

Much work is needed in the world to reduce the plague of HIV. It is a worldwide catastrophe.

An uninformed public is an unprotected public.

The information the public has received concerning Pandemic H5N1 is dangerous. Continued "managed" news is being presented painting mostly rosy pictures. What we need is a clear and honest communications program NOW.

Vaccines wont help us during the first wave of Pandemic Flu. There are not enough anti-virals. To avoid infection you must be prepared to self quarantine for the duration of the first wave. The first wave will last 6-8 weeks. There will be supply disruptions of unknown duration. Critical services may not be available for an unknown duration.

Prepare now while we still have the time or we may see a catastrophe that dwarfs HIV... in just a few weeks time... not 20 years.

Please Mr. Secretary, now is the time to tell the truth to the American people. Do the right thing.

Posted by: Goju | August 24, 2007 at 08:57 AM

Dr Leavitt,

I knew what I wanted to say until I read your post. Wow.

From the past: Source is History Channel, Program was on the Atomic Bomb and Chernobyl. After August 1945 people did not want to marry anyone from Nagasaki or Hiroshima for fear of radiation and how the kids would turn out.

From the present. Lindsey Lohan and other Hollywood stars do not fear DUI conviction. Rehab for drugs or alcoholism is ok - but they hide what types of plastic surgery they have had done. In my state plastic surgery is ok but DUI means mandatory one year in jail.

My point is that stigmas are malleable. They vary from culture to culture and place to place because we let them. The facts do not change but the reactions do.

Note: at a block party I found out that during blood donations HIV testing is normal. That if there is a false positive your name and social security number are sent to the public health department and you can never again give blood.

In my opinion it is all about NIMBY - "Not in my back yard" Paris Hilton's and Lindsey Lohan's DUI happens "over there" but a DUI by a local could kill me or my family so that is bad. Cancer, drug resistant TB and HIV are all deadly - yet cancer is not contagious and hence lacks social stigma of HIV.

I now see more value in what you talked about with health diplomacy. I also agree with Scott Jones, and the Allstate insurance commercial that say "people do not think about nor plan for the bad things that could happen to them." Not only do most citizens not think and expended money to ward off or mitigate future problems, neither do politicians. There is political penalty for planning for a disaster that does not happen. There is no penalty for not doing the right things during a disaster. The mayor of New Orleans was rehired. The Mayor of Washington D.C. was rehired after his drug conviction.

Yes all this is a window on H5N1 and how people may with hold information if there is stigma associated with H5N1. In my opinion Australia is trying to defuse the problem with "do not soldier on but feel free to take a sick day if you have the flu."

Regards,
Allen

Posted by: Allen | August 24, 2007 at 09:40 AM

Secretary Leavitt,

Funny how some things transcend cultures and beliefs. The very basic fact is that we are all human. We share life in different locations, different backgrounds and different ambitions….. Most live their lives based on the simple right to life……… They just try to make it from one day to the next with very few expectations. Others, [the few] of course, want to rule (or change) the world.

For those who notice the many… we are humbled.

You wrote:
Human nature precludes us from perceiving that a danger to others is also a danger to us personally.

You could also think of human nature exactly opposite of your quote. I see life this way also: Human nature precludes others from perceiving a danger to one is also a danger to all.

I am referring to pandemics, of course. I (personally) need information from someone about triage guidelines for all patients (not just flu patients). We have to be able to manage the flow of all patients in our health system. If these guidelines are not being written by some organization that has authority, then we will serve a patchwork network of chaos. I do not want that to happen in my county.

If these are being worked on, then a simple confirmation will suffice. Otherwise, I will have to seek other avenues.

You also wrote:

“Unless educated, and with the education and ramifications reinforced regularly, mankind tends to ignore threats.”

This is what I intend to do, but it is becoming increasingly more difficult without some educational material at hand. Drills and scenarios are great and serve the purpose for which they are written. But, without using the proper teaching tools and some recommended Triage guidelines, we will fail.

If a pandemic were to happen in the next year or two, how prepared might we be at the local level, when we have yet to really take into consideration all the possible issues that might arise.

I think the American people are talented and creative, but they will also develop a crowd mentality unless they perceive there is an organized approach to solutions in any given issue.

Thank you for having this blog….. the observations of your travels say much about your character.

Posted by: Kim Crady RN | August 26, 2007 at 06:40 PM

It all come down to awareness, they need to be aware of the dangerous.

Posted by: baby girl | December 15, 2007 at 09:26 AM