Insights

Empowering Patient Advocates Across the Globe – Bristol Myers Squibb

Teenager’s legacy helping generations of patients

One of the partnerships that Alsante coordinates is with The Max Foundation, a United States-based nonprofit committed to health equity in dozens of regions around the world, including Africa, Latin America and the Middle East. The foundation believes people living with cancer should have access to high-impact medicines, no matter where they live. BMS helps that effort by providing access to medications.

The foundation is named in honor of Maxamiliano Rivarola, who spent most of his short life in his home country of Argentina, before being brought to the U.S. for treatment. Chronic myeloid leukemia took Max when he was just 17. But his mother, Pat, knew her son could still impact the world.

She went on to establish the Max Foundation, which has helped more than 1,800 patients in 35 countries.

“They’ve proven in a challenging environment that they have a system to get medications to people who would not otherwise have access,” Alsante said. “To me, it’s a miracle what she (Pat) has put together.”

Tattoo artists look out for melanoma

Fran Rojas is a creative tattoo artist in Mexico, whose works of art include vibrant flowers, precious pets and designs that look they’ve been embroidered into the skin. As a tattoo artist, she sees parts of her client’s bodies they can’t easily see. Places where moles and other spots can easily be hidden.

Rojas joined BMS Mexico’s Look for the Spot campaign, which trains tattoo artists to check their clients for signs of melanoma. She knows moles can be dangerous. Before taking part in the initiative, her grandmother’s boyfriend had a mole that ultimately was diagnosed as melanoma. So, Rojas was interested in wanting to learn how to spot potential signs of cancer in her clients and others.

Alonso Zepeda said Look for the Spot was born out of a discussion about building an advocacy initiative around melanoma. They wanted something that went beyond the traditional press release, which is often quickly forgotten. They wanted something that could make a difference, possibly save someone’s life.

He said some of the tattoo artists were a little skeptical at first, but once they realized the program was created to increase awareness, they were all in. And they’re helping spread the word about it.

Zepeda said the tattoo artists are not only talking with their clients about the program, they’re also sharing it with their peers. “They send us screenshots of their colleagues reaching out to them,” he said.

Working with real-life HEROES

In a similar program, hair stylists and barbers are being trained to spot scalp and skin conditions in their clients.

Brittane Thames has been a mobile hair stylist and barber for several years. She heard about the Health Education + Reliable Outreach + Empathetic Support (HEROES) program from a friend who is an ambassador for the National Psoriasis Foundation.  The program is offered in the U.S. through the Global Healthy Living Foundation and supported by an independent grant provided by BMS.

Thames is familiar with what psoriasis looks like and the impact it can have on people’s health outcomes. She was diagnosed with the condition at age 13, after her hair stylist saw symptoms. A visit by Thames to the dermatologist confirmed her stylist was correct.

So, she said, “this program definitely fit me.”

Thames performs a thorough scalp analysis on each client, suggesting they see a medical professional if she sees signs of a health condition. The program helps address the potential stigma by creating a safe place for clients.

Seth Ginbserg, co-founder and president of the Global Healthy Living Foundation, said the HEROES program launched in June and is in more than 100 cities in the U.S., with a goal of expanding to 1,000. The program has plans for expansion in Japan, Australia and Canada. He said the long-term objective is to have the program become part of the certification and licensing process for hair stylists and barbers.

Promoting an understanding of IBD

Tina Aswani Omprakash knows what it’s like to live with a chronic disease. She was diagnosed with Crohn’s disease more than 15 years ago and struggled mightily with it.

In addition to starting an advocacy blog about Crohn’s disease, she co-founded the IBD South Asian Alliance. Omprakash wants to promote early diagnosis, improve access to treatment and dispel the stigma that is often connected with IBD (inflammatory bowel disease). The alliance is active in the U.S. and the South Asian diaspora.

Richard Standifer, director of Patient Advocacy, Immunology for BMS, praised Omprakash for cofounding the group, after recognizing some of the biggest unmet needs in the U.S.

Omprakash received the Impact Award in this year’s BMS and Lyfebulb Global Innovation Challenge for her project to further develop initiatives to help meet the medical, surgical, nutritional and psychosocial needs in the South Asian IBD community. Lyfebulb is a patient-empowerment platform that connects patients with industry to support user-driven innovation.

Standifer said Omprakash has helped the group move forward by making herself an integral partner with like-minded programs. One example is working with the American Gastroenterological Association on a program during Digestive Disease Week. It included helping physicians see what “blind spots” they may have, including possibly not hearing the important things their patients are saying.

Teaming up with an NBA legend for AFib campaign

Kareem Abdul-Jabbar is known around the world as one of the greatest basketball players ever. He is using that notoriety to raise awareness about atrial fibrillation (AFib), with which he was diagnosed. The basketball legend joined the No Time to Wait campaign, which is sponsored by BMS and Pfizer.

Abdul-Jabbar said he initially dismissed the light-headedness and shortness of breath he was experiencing, but ultimately ended up in the hospital and diagnosed with the condition.

More than 9.5 million people in the U.S. are projected to have AFib this year, with many of them going undiagnosed because they dismissed the symptoms. Doing so can lead to serious health issues, including a significantly increased risk of having a stroke.

The No Time to Wait AFib campaign has been named a finalist in this year’s PM360 Trailblazer Awards, which recognize outstanding achievement and innovation in healthcare marketing.  

Having a legend like Abdul-Jabbar talk about AFib and how it impacted his life brings awareness to a much larger audience, including people who normally might not receive information about the condition. And, as patient advocates know, awareness can save lives.