Feature

Albinism awareness goes global in dermatologists’ nonprofit work


 

A dermatologist-led nonprofit organization has entered into a partnership with the United Nations to achieve global progress towards greater inclusivity for people with albinism.

Ms. Diandra Forrest, a model and advocate with albinism Courtesy NYDG Foundation

Ms. Diandra Forrest, a model and advocate with albinism, at the NYDG Foundation's ColorFull campaign kickoff.

Representatives from the New York–based NYDG Foundation, including dermatologist David Colbert, MD, recently signed the agreement with the United Nations High Commissioner for Human Rights. At the center of the inclusivity efforts is the foundation’s ColorFull campaign, which aims to shape a collective response to the discrimination and violence that individuals with albinism face around the world.

“We really need to build more inclusive and communal health care systems for all. Partnering with the United Nations will help us to reach our goals and build stronger bonds with those health care providers working with one of the most marginalized and vulnerable groups in Africa,” Dr. Colbert said in an interview.

Stylish images of individuals with albinism, including prominent model Diandra Forrest, anchor the ColorFull campaign’s messaging; Ms. Forrest is featured in a video posted by the United Nations in November announcing the joint human rights campaign. Because the consequences of albinism can be deadly serious for affected individuals in many parts of the world, awareness is desperately needed, participants in NYDG’s work and in Standing Voice, another nonprofit that provides resources for people with albinism in East Africa, emphasized in interviews.

Striving to do good work

Stephan Bognar, a seasoned leader of international nonprofits, has teamed up with Dr. Colbert, NYDG Foundation’s founding physician, to craft the international campaign to raise awareness of albinism and increase acceptance of those with the condition. “You don’t always have to stand alone to break down the walls of exclusion. The fight for social justice and human rights for persons with albinism requires a collective responsibility,” Mr. Bognar said in an interview.

Ms. Connie Chiu, model and singer, is a global ambassador for the NYDG Foundation's ColorFull campaign Stephanie Sinclair, courtesy NYDG Foundation

Ms. Connie Chiu, a global ambassador for the NYDG Foundation's ColorFull campaign

Dr. Colbert, senior partner of the New York Dermatology Group, a large Manhattan-based practice, founded the nonprofit when he became involved in wound-care efforts in Haiti following the 2010 earthquake. The foundation has since supported such philanthropic efforts as helping people with albinism, offering scholarships, and raising awareness of the importance of sun protection among youth athletes.

“One day, 3 years ago or so, I was reading the New York Times and I came across this article – it was called ‘The Hunted,’ ” Dr. Colbert recalled. “It was something I knew nothing about. In Eastern Africa, people with albinism are often hunted down for body parts and their lives are at risk” from being hunted and murdered – but also because their body parts are used for witchcraft and magic, he noted.

“I was captivated by that, and I remember I called Stephan, and I said, ‘I have a project for you.’ ” Because of extensive previous work with international nongovernmental organizations and the United Nations, Mr. Bognar, who is now the executive director of the NYDG Foundation, “had the pedigree to make things happen instead of spinning our wheels,” Dr. Colbert said.

Courtesy Dr. David Colbert

Dr. David Colbert


Albinism is more common by a factor of about 10 in certain sub-Saharan African populations in Tanzania and Malawi, compared with worldwide prevalence. The condition is stigmatized, but people with albinism are also believed to possess some magical powers. People with albinism are attacked, maimed, and even killed for their body parts, which are used by traditional “witch doctors” in ceremonies designed to generate wealth and good fortune. Raping a woman with albinism is thought by some to cure HIV/AIDS and infertility.

If African individuals with albinism escapes these horrors, they are still at high risk of developing a disfiguring, or even fatal, skin cancer. Even in higher-resource countries and in places farther from the equator, though, people with albinism still need stringent sun-exposure precautions and frequent dermatologic surveillance.

Philanthropic work in dermatology

Despite his busy practice, Dr. Colbert said he has found great satisfaction in pursuing philanthropic work. For physicians considering similar efforts, he said that genuine engagement with the issue is critical and global travel isn’t necessary to make a real difference.

“I think that, first, this should be something that you’re interested in and that you have the means to make some impact,” Dr. Colbert said. “Doing something doesn’t need to be a global campaign. You don’t need to have a home run – every little thing counts. Catching one squamous cell cancer on one patient with albinism makes a difference. But if you want to go bigger, you have to look at your community and see who has the resources and who might also be interested” in a cause you’re passionate about.

He added that a busy physician shouldn’t expect to do it all. “You have to find the right partner because we as physicians are taking care of our patients and paying the rent, so taking on a partner who is trained to do that can ... help you achieve what you envision.”

Though the NYDG Foundation has funded trips to Africa and participates in teledermatology there, Dr. Colbert said that the awareness campaign the NYDG is cosponsoring with the United Nations is of fundamental importance as well. “This is a really great example of the positive impact that social media can have on our society – in a good way, instead of a negative or self-serving way,” he said.

“I think that the ColorFull campaign will normalize the idea of people who are living without melanin in their skin. It keeps it out of the realm of ‘Don’t say anything.’ People don’t know what it means, so if we bring out the science, and show successful people who have normal lives, who have children, and we explain what it is, it demystifies it – and everybody wins. ... We’re all just people, no matter how many melanin granules we have.”

Dr. Colbert reported that he has no relevant conflicts of interest.

Standing Voice also provides resources in East Africa

The work of other nongovernmental organizations is also making a difference for people in East Africa with albinism.

Standing Voice is a United Kingdom–based nonprofit that provides education and resources that include sunscreen, as well as assessment and treatment of skin conditions for people with albinism in Tanzania and Malawi.

Courtesy Standing Voice

This and the next three photos depict how Standing Voice works with African healthcare workers to provide skin cancer screening and treatment, sun-protective clothing, sunscreen, education, and other support for prople with albinism and their families.

Andrew Sharp, MD, a dermatologic surgeon in Leicester, England, began volunteering with Standing Voice in 2017 and now heads the surgical training efforts undertaken by the organization in Tanzania and Malawi.

This and other work by Standing Voice were on display in an exhibit at the World Congress of Dermatology meeting in Milan in June 2019. In an interview at the meeting, Dr. Sharp, who spent his childhood in East Africa, contrasted access to dermatology care in the United States and United Kingdom with that in Africa, where an entire country may have hardly more than a few dermatologists.

Courtesy Standing Voice
Much of Dr. Sharp’s work in Africa centers on providing training to the nonphysician health workers who provide advanced care, including dermatologic surgery. When these practitioners see patients with albinism, they must make judgments about which lesions to remove, and which techniques to use. He and his volunteer colleagues have helped practitioners learn less-invasive techniques for squamous cell carcinoma removal, for example.

“I go about three times a year, for about a week,” explained Dr. Sharp. “I’ll do a workshop to teach basic skin surgery techniques – excisions and biopsies. Very simple stuff. I’ll teach skin grafting as well because some of these patients have large lesions that won’t close directly,” he said. “On the whole, we like to use good grafts, rather than flaps, because often a local flap is just moving sun-damaged skin.”

Courtesy Standing Voice
In two or three clinic days, Dr. Sharp and his team see over 100 patients daily, while also selecting patients for supervised surgeries by local health care workers to reinforce the techniques that are taught during the visits.

Many patients have to travel great distances to reach a facility where general anesthesia and a full operating room suite are available, resources that are in high demand in resource-restricted African nations, according to Dr. Sharp. Teaching African practitioners regional anesthesia techniques that can be used for skin cancer surgery also helps ensure that more patients with albinism and squamous cell carcinoma can be treated – and treated closer to home.

Courtesy Standing Voice
Ongoing education about sun protection, assistance with seeking indoor work, and providing sun protective clothing and locally manufactured sunscreen are all also part of the work of Standing Voice. And, said Dr. Sharp, the situation is beginning to change. “In the last 4 years, governments have come on board in a big way, wanting to educate populations” about the rights of individuals with disabilities, including those with albinism.

Dr. Sharp reported that he has no relevant conflicts of interest.

Next Article: