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“We have to be part of the conversation on advisory boards, on clinal trials strategy, so we can help industry frame this conversation in a way that is less clinical and more about the humanity of developing trials. That this is about people who are affected by the science, and once you understand the people, and build relationships, the science and soul connect.”
- Maimah Karmo, Founder and President, Tigerlily Foundation
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Ahead of the year’s seminal pharmaceutical forum, enjoy the below article in which Maimah Karmo, Founder and President, Tigerlily Foundation, explores how pharma can give Black women the representation they deserve in trials and beyond.
Maimah Karmo: Surviving, fighting, winning
The Tigerlily Foundation President and Founder is more hopeful than ever that she can help pharma give Black women the representation they deserve in trials and beyond
By Andrew Stone on Nov 26, 2020
Cancer survivor Maimah Karmo is starting to win her long fight. After 14 years running the Tigerlily Foundation while holding down a full-time job, single mother Karmo is finally beginning to attract for her community the attention and support it has so long lacked.
This year several pharma donors have stepped up to help put the cancer awareness Foundation on the kind of footing that will enable it to make a difference at scale, rather than working hand to mouth. Karmo, the Foundation’s president, will no longer have to self-fund the organisation.
The new financial backing has more than quadrupled her budget this year but Karmo, who was diagnosed with Stage II breast cancer in 2006, is calling for further support, financial and otherwise. This includes help in the form of ‘sweat’ equity, thought leadership, marketing, and public relations, she says.
Karmo’s ambition is, she says, the build “an army of angels – patient advocates, who are trusted by other patients. Who better to help industry and healthcare partners fix problems than someone who are living it?”
And until this year, she felt like she was swimming with her hands tied. Corporations were funding larger organisations with big marketing budgets and large staff, rather than supporting patient-led groups, like hers, despite the fact it is led by a female, first-generation immigrant and patient, who has lived with the very disparities she is working to end.
“How can I help my population when I see money being poured into white-led organisations that don’t have access to Black patients and are not trusted partners? “They are ideating among themselves and don’t know what I know as a Black patient, listening to patients of colour across the country and as a first-generation African immigrant, across the globe. It has been exhausting, like pushing a weight uphill with someone pushing you down.”
Trust and support
She admits she was on the verge of giving up many times, in the face of what she believes is systemic organisational racism, not fitting the mould of what a non-profit leader should look like and being excluded from the ‘club’.
A recent conversation with a metastatic breast cancer patient reminded her of why she perseveres, however. “She called me to let me know that her treatment was not working’. She called me, not her doctor because she trusts me even though she has access to a strong healthcare team; she needed to talk to a black patient for trust and support.”
This year the wider cultural conversation changed utterly as the killing of George Floyd brought the inequalities and inequities black communities suffer into the spotlight. “The world got to see what we see all the time. The death of George Floyd was a stark highlight of what we face every day – most of which is not captured on camera, but that foot, that knee is on our neck every day.” says Karmo.
George Floyd’s death and the subsequent outcry marked the start of some painful conversations, focusing on the many historical injustices Black Americans in particular have suffered in the healthcare sector generally, and in the research sphere in particular.
A change in mood
The lack of participation among African Americans in clinical trials is a long standing failure commonly acknowledged in the healthcare and life sciences sector. Lack of trust in the scientific and research communities is understandable, given a history of profiteering, abuses and downright atrocities.
The story of Henrietta Lacks, the abuses carried out by the father of modern gynecology Marion Sims, or the Tuskegee syphillis experiment are all notable examples of the racism that shames historical research. “People’s traumas need to be talked about, recognised and respected. It begs to be seen,” says Karmo. “It is painful but the next step can be forgiveness and healing.”
The change in mood means more pharma companies are now approaching the issue of health equity afresh and are newly receptive to Karmo’s message.
And her message to them is that her community should be an equal partner. “We have to be part of the conversation on advisory boards, on clinal trials strategy, so we can help industry frame this conversation in a way that is less clinical and more about the humanity of developing trials. That this is about people who are affected by the science, and once you understand the people, and build relationships, the science and soul connect.”
The conversation will also need to be about acknowledging and challenging assumptions and having uncomfortable conversations, as well as acknowledging the many biases and barriers under-served populations face in participating in trials.
Educate, empower, inspire
Tigerlily offers a unique means of reaching under-served populations in some of the most under-represented cities to promote these messages in ways that other advocacy organisations cannot, says Karmo.
A recent drive-in movie night the Foundation staged, giving guests goodie bags, as well as having a mammogram van on-site is an example of the nature of the importance of the Fuondation’s approach to reaching people and patients, to achieve multiple aims. “We had almost three hundred packed cars. That is how you bring people together culturally,” says Karmo.
“We were able to educate, empower, inspire, provide support for people living through COVID-19 who may not be able to afford supplies otherwise, offer screening and connect people in a safe way.”
Karmo’s vision now is to build deeper and more abiding partnerships with the healthcare business including pharma. “Especially as it pertains to clinical trials, I want to see the patient involved in these conversations. Talking about what are the parameters, measurements, potential barriers as industry develops clinical trial and identifies sites.
“I want to see patients fully engaged throughout the process. In order to build trust, understanding, self-advocacy and partnership, people need to feel that they are there at the outset.”
Building trust in trials
Such engagement will only happen by building a well of trust in communities and that takes time. This is what will move the dial on the things that pharma wants to achieve, such as more diversity in clinical trials, she says. “Start with making the work of clinal trials more acceptable. The focus needs to be on relationship building rather than focusing on recruitment.”
Last year Tigerlily took twenty five women of colour to the San Antonio Breast Cancer Symposium. “We selected women from the 20 cities that have the highest mortality rate from breast cancer to attend. They got to understand how to talk to scientists, how to ask the right questions, how to become partners in designing treatments, looking at what's working, what's not working.
“And the scientists got to learn how to build better relationships with and respect for this community. When you start off by educating patients, empowering them, informing them and working with them as a partner at the beginning of the process, you have a relationship that evolves. Then trust can begin.”
Now, the conversation needs to move from the fringes, she says. “I want to see inclusion woven in and around everything. I want to see every major health association, scientific, medical, pharma and other organisation that affects a Black woman’s life, health and experience, to look at the barriers they face and to become partners in eliminating those barriers.
“I want to see patient voices included on how to co-create trials. I would like to see the next level of depth in that conversation on a global stage.”
Now more than ever, it seems pharma may be willing to engage. That, at least, is her hope and her invitation. “Walk beside us so you know where we are,” she says. “Walk together as comrades and friends.”
END
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