Monique Gore-Massy: Advocacy and service - Bristol Myers Squibb

Advocacy and service

Monique Gore-Massy marches on for patients living with lupus and for hope of a cure.

When Monique Gore-Massy thinks about her wedding day 11 years ago, she bows her head and groans.

It was not the dream day she had hoped for. That morning she was quite ill and didn’t feel beautiful–she was feeling rocked by the symptoms of lupus, a chronic immune-mediated disease for which there is no cure. Diagnosed only months prior, Monique still hadn’t wrapped her head around the diagnosis and had almost called the wedding off. But then she locked eyes with her now husband, Alvin, and, “he looked at me like I was the most beautiful thing in the world.” And that’s the memory she tries to cling to most from that day.

The support of her husband, family and closest friends—and from her dachshund, Mr. Chip—has carried Monique through the past decade of life managing lupus, a disease that does not take a day off, she said. Her symptoms have morphed and changed over the years, taking her on an unpredictable roller coaster ride. She’s experienced everything from fatigue and fevers to rashes and sores on her skin and in her mouth, to hair loss, to blindness, lupus nephritis (inflammation of the kidney) and heart issues like pericarditis, which causes extreme chest pain. A few years ago, she lost mobility for over two years, and was completely dependent on loved ones. 

“Lupus is a long-term fight. You’ll have to work at it every single day. But it doesn’t take anything away from who you are individually. It takes nothing away from your power.”
– Monique

“Lupus is a long-term fight,” she said. “You’ll have to work at it every single day. So, celebrate what you’re able to do and understand that some days your body is not always going to respond the way you think it should. But it doesn’t take anything away from who you are individually. It takes nothing away from your power.”

Monique has found many “silver linings” along her journey. She works as an ambassador for the Lupus Foundation of America, and as a Diversity, Equity and Inclusion champion, and patient board and steering committee member, for the COVID Global Rheumatology Alliance, a division of the American College of Rheumatology, one of the leading institutions conducting research in rheumatic diseases. She works to provide access to information and research about COVID-19 and the vaccine to rheumatic patients.

Her advocacy work has allowed Monique to see more patients advocating for themselves, doing more research, and joining clinical trials, particularly patients from historically underrepresented communities. Her service can also take a deeply personal touch. Hair thinning or loss is an early symptom of lupus, and when Monique began losing hers, she discovered that natural-looking, stylish wigs were hard to find and quite expensive. Because there is not the same level of awareness of the link between lupus and hair loss that exists for conditions such as cancer, there are not as many “wig drives” and hair donations for those patients. So when Monique meets fellow lupus patients, she will often respond to any admiring inquiry about her own hair with an offer to make that patient a wig of her own. A gifted amateur hair stylist, Monique may make a dozen or so wigs a year, her time and energy permitting, so that those women can “decide how they feel like showing up in the world, how they present themselves.”

Elevating the patient is extremely important to Monique, and she hopes scientists and researchers are poised to listen to their voices. “The first thing you should do is ask the patient. The last thing you should do is ask the patient. The patient should be the primary focal point in everything that you do,” she said.

Strong researcher-patient relationships are a key part of advancing the science to find more treatments and one day a cure for lupus, Monique said.

Bristol Myers Squibb has ongoing trials in the lupus space and is committed to pursuing innovative approaches to offering personalized medicine options for lupus patients. Our researchers are exploring multiple targets for drug development in lupus that may lead to effective therapies for the lupus population. The exploration of disease pathways and novel biomarkers help further our understanding of the disease biology, advance potential treatment options, and provide hope of long-lasting relief for lupus patients like Monique.

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The touch that transforms

2021 Annual Report


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The patient stories shared in this Annual Report depict individual patient responses to our medicines or investigational compounds and are not representative of all patient responses. In addition, there is no guarantee that potential drugs or indications still in development will receive regulatory approval. This Annual Report contains statements about the company’s future plans and prospects that constitute forward-looking statements for purposes of the safe harbor provisions under the Private Securities Litigation Reform Act of 1995. Actual results may differ from those indicated as a result of various important factors, including those discussed in the company’s most recent annual report on Form 10-K and reports on Form 10-Q and Form 8-K. These documents are available from the SEC, the Bristol-Myers Squibb website or from Bristol-Myers Squibb Investor Relations. In addition, any forward-looking statements represent our estimates only as of the date hereof and should not be relied upon as representing our estimates as of any subsequent date. While we may elect to update forward-looking statements at some point in the future, we specifically disclaim any obligation to do so, even if our estimates change. This Annual Report also contains certain non-GAAP financial measures, adjusted to exclude certain costs, expenses, gains and losses and other specified items. Reconciliations of these non-GAAP financial measures to the most comparable GAAP measures are available on the company’s website at