A dermatologist-led nonprofit organization has entered into a
Representatives from the New York–based, including dermatologist David Colbert, MD, recently signed the agreement with the . At the center of the inclusivity efforts is the foundation’s 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
Striving to do good work
, 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.
, 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 ‘,’ ” 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.
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.
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.
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.
“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.”
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.
Dr. Sharp reported that he has no relevant conflicts of interest.