Hats off to Tanzania Albinism Project

In Tanzania, where some of the oldest human fossils have been found, and where Mt. Kilimanjaro rises above the clouds, a group of international dermatologists are hoping to help a very vulnerable population.

The region has one of the highest incidences of albinism in the world. Although the condition is rare in the western world, it is quite common in sub-Saharan Africa, according to some studies. (While the incidence of this genetic condition is about 1 in 37,000 U.S. residents, the rate in this region is as high as 1 in 1,400.)

The people with albinism are also subject to discrimination, stigma and even murder.

Sun Damage to Back of an Albino Individual

But, another important concern is the health of the albinos whose pink skin is exposed to the African sunshine, and where many of the occupations are outdoors and in the field.

Many of the locals with albinism die of cancer before age 40; in fact, fewer than 2% make it to their 40th birthday. And almost all of the children with albinism show signs of sun damage before age 10.

Because of a lack of funding, many can’t afford hats to protect themselves; because of a lack of education, many don’t know the link between sun damage and cancer.

That’s according to Dr. David McLean, the secretary-general of the International League of Dermatological Societies, a nongovernmental organization affiliated with the World Health Organization.

Dr. McLean has been visiting the region for the past 2 decades, helping to establish and grow the Regional Dermatology Training Centre (RDTC), an ILDS program, in the town of Moshi in Tanzania.

He is also among a group who recently spearheaded a project to make hats — the ones with 7.5-cm rim — available to the albinism population in Tanzania. [Listen to Dr. McLean below.]

Called “Hats On for Skin Health,” a collaboration between the ILDS and Stiefel, the project is a global effort to raise funds for the purchase of hats and other protective items for albinos in Tanzania.

Sun-Protective Hat on an Albino Girl

The items will be distributed by RDTC that manages a mobile skin care clinic, which regularly visits people with albinism living in the region and educates the locals, especially parents, about albinism. The lesson they try to get across, said Dr. McLean, is to let their children play outdoors, but cover them up first.

The group has located a hat manufacturer in Moshi, which is currently producing template models for children and adults. Many of the workers, said Dr. McLean, have albinism. “We think that’s definitely part of the solution going forward,” he said.

The cost of manufacturing a hat in Africa? Less than $2.50. The hats are expected to last for at least for 10 years.
To start the campaign, Stiefel, a subsidiary of GlaxoSmithKline, has donated $25,000, and Dr. McLean hopes that dermatologists, other professionals, and even the public, get involved with the campaign.

“Our people are on the ground there. We know what happens to every donated dollar,” said Dr. McLean.

The group expects to have handed out at least 15,000 hats by this time next year. Visit www.hatsonforskinhealth.org to learn more.

(Photos courtesy of the patients and staff of the Regional Dermatology Training Centre, Tanzania.)

By Naseem S. Miller (@ReportingBack)

Transatlantic Disagreements on Diabetes

Not surprisingly, the Avandia news was the big buzz at the meeting of the European Association for the Study of Diabetes (EASD) in Stockholm. Attendees I spoke with expressed surprise that although the U.S. Food and Drug Administration and the European Medicines Agency had made announcements on same day, their decisions were different: The EMA had suspended Avandia entirely from the European market while the FDA decided to keep it on the U.S. market with tight restrictions.

How could the European and American agencies have reviewed the same data yet come to different conclusions regarding risk/benefit? And which decision was right? There was much speculation and debate in the hallways at EASD.

European Union flag photo by openDemocracy via Flickr Creative Commons

Simultaneously, another transatlantic debate was taking place at the meeting.  This one, though less likely to make headlines, also has major implications for clinical practice worldwide.

Back in January 2010, the American Diabetes Association recommended the use of hemoglobin A1c for diagnosing diabetes, listing convenience and stability of the test among the advantages. The move was controversial, with many scientists citing data suggesting that sizable proportions of people with diabetes will be missed by using that test rather than either fasting glucose or an oral glucose tolerance test (OGTT), considered the gold standard.

At the EASD meeting, investigators from the U.K., Spain, Norway, France, Portugal, and the Republic of Korea presented data showing a lack of correlation between the tests, and either advised against or at least recommended caution in the use of A1c as a diagnostic.

Prof. George Alberti summarized an expert committee’s recommendation to the World Health Organization that glucose testing should remain the preferred diagnostic method, with A1c as an alternative provided that certain conditions are met. Both the WHO and the EASD are expected to issue positions soon.

American Flag photo by ayblazerman via Flickr Creative Commons

I asked Dr. M. Sue Kirkman, clinical affairs vice president at ADA, to comment. She said that the ADA had been aware of data showing that the A1c may be less sensitive and therefore would identify fewer people with diabetes than does the fasting glucose, which in turn detects fewer cases than does the OGTT.

She noted that the ADA didn’t advise against glucose tests. “If people want to use glucose tests, they certainly can. But the reality is that a quarter of people with type 2 diabetes in the U.S. are undiagnosed. If you have a test that doesn’t require fasting, that you do when the patient’s in your office—especially in populations with less access to medical care—we think in the real world you can actually diagnose more people.”

While there’s disagreement over diagnostics, at least there’s one point of agreement: Few if any of those patients will be treated with Avandia.

—Miriam E. Tucker (@MiriamETucker on Twitter)





Please Turn On Your Cell Phones

Photo by Sherry Boschert

From a meeting sponsored by the American Diabetes Association in San Francisco.

It’s so routine it’s almost a Pavlovian response — at the start of each medical conference that I cover, the course director asks everyone to please silence their cell phones and pagers. I reach for my iPhone, turn off the sound, and discreetly keep it handy in case there’s some tidbit of news worth tweeting.

But not this time! Dr. Richard M. Bergenstal of the American Diabetes Association asked the hundreds of people at a postgraduate course to turn on their cell phones. He then walked us through the process of sending a text message with the letters “ADA” to 25383, which generates a return text asking the user to confirm that you’d like to donate $5 for diabetes research. The charge shows up later on the user’s phone bill.

Judging by the giggles in the emphatically non-adolescent crowd, this may have been the first text message that many of them have sent via their cell phones. Dr. Bergenstal slyly suggested that they may want to practice their texting chops by texting “ADA” to 25383 again… and again… and again…

It’s all part of the Association’s “Stop Diabetes” campaign, and it’s the first time I’ve seen a medical organization use this modern tool in its public outreach. I think we’ll be seeing more of this.

— Sherry Boschert (@sherryboschert on Twitter)