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#TLCTransform Chat: The Inclusion Pledge Partnership to Impact Health Equity

The Tigerlily Foundation hosted #TLCTransform Chat: The Inclusion Pledge Partnership to Impact Health Equity, on 7/1/20. The meeting began with an active listening session about the deeply disturbing disparities facing Black women in every aspect of breast cancer research, diagnosis, treatment, and mortality. The community was presented with the origins of the pledge and encourage to consider their role in ending health disparities.

Our all star cadre of guests included: 

Maimah Karmo, President Tigerlily Foundation

Angel in Disguise, MBC Advocacy Organization 

Julia Maues, MBC Patient Advocate 

Christine Hodgdon, MBC Patient Advocate  

Jamil Kali, <> 

Dana Donofree, Patient Advocate  

Tomika Talks, Patient Advocate 

Part 1: The Story of the #InclusionPledge

What’s the Inclusion Pledge?

The Inclusion Pledge is 21 words committing us to intentionally use our power and resources to center Health Equity in all of our advocacy.

What can 21 words do?

A lot. We were already going to be doing advocacy, awareness, education, and storytelling. We were already going to use our social capital, financial support, networking, and other resources for something, that’s why you’re here right now. Every event we attend also wants to use those things. The pledge allows us to combine our efforts, to maximize our impact around the urgent unmet need of Health Equity.

Four Facts of Breast Cancer Life and Death Speak For Themselves

Okay. I see your point! What are these 21 words?

“WE PLEDGE TO ONLY PARTICIPATE IN INITIATIVES – ADVOCACY PANELS, ADVISORY BOARDS, PLANNING COMMITTEES, PROGRAMS, THAT INCLUDE THE EXPERIENCE OF AFRICAN AMERICAN WOMEN.” 

Part 2: What Does The Inclusion Pledge Partnership Mean For Advocates? Here’s what the community had to say.

Q1. For those who have taken the #InclusionPledge: what motivated you?

Q2. If you’ve taken the #InclusionPledge: what actions you have taken so far?

Q3. For those who have taken the #InclusionPledge: what actions have you have committed to take?

Is that it?

Nope! Now it’s time to get going. Let folks know that if they want you they need to bring Black women too. And, if they’re not sure where to find them you and Tigerlily Foundation can help.

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#TLCTransform Chat: Do Black Lives Really Matter Everywhere? Equity, Access, and Advocacy in Cancer

The Tigerlily Foundation hosted #TLCTransform Chat: Do Black Lives Really Matter Everywhere? Equity, Access, and Advocacy in Cancer, on June 17th, 2020. An impressive panel of patient advocates, physicians, and researchers explored the themes of health equity, access, and advocacy in the context of cancer treatment and how these three factors intersect with outcomes for Black patients.

T1 Health Equity: what is it and how does it apply when it comes to Black lives and cancer?

What is Health Equity?


In a report designed to increase consensus around meaning of health equity, the Robert Wood Johnson Foundation (RWJF) provides the following definition: “Health equity means that everyone has a fair and just opportunity to be as healthy as possible. This requires removing obstacles to health such as poverty, discrimination, and their consequences, including powerlessness and lack of access to good jobs with fair pay, quality education and housing, safe environments, and health care.”

May 1, 2017 Publisher: Robert Wood Johnson Foundation
Author(s): Braveman P, Arkin E, Orleans T, Proctor D, and Plough A

https://twitter.com/DrMoniqueGary/status/1273411356088303617?s=20

T2 Access to health care: Black patients face barriers. This includes access to meds, to treatment centers, transportation, clinical trial education, financial toxicity etc.

The community agreed that social aspects of health resource allocation profoundly shape how Black patients experience cancer treatment, but that’s not the only force shaping outcomes. The availability of points of care and the means to enter them isn’t enough to make access happen. Social Determinants of Health and unhelpful mindsets reach right into treatment and support spaces. Everything that happens to patients and their communities happens in society, and that can’t help but matter.

T3 Advocacy: Patient advocates, caregivers, advocacy organizations, and many clinicians are tireless advocates working to help strike down barriers to access and equity.

Advocates make themselves conspicuous and consequential wherever decisions about health are being made. In their view, this should include medical research, support for patients and care partners, funding, advancing awareness, and anything else that could possibly effect health.

Key Community Insights

The community offered a sobering analysis of the life and death struggle patients and care partners face without adequate health equity. There are no cheat codes to beat the crushing impact of racism, sexism, poverty, stigma, or other thieves of health equity. And there is no time to lose. Each of these tweets contains its own urgent call to action because patients are sick now and help can’t wait.

https://twitter.com/DrMoniqueGary/status/1273407638064246786?s=20
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#TLCTransform Chat: Pivoting, Partnerships, and Purpose During and After #COVID19

The Tigerlily Foundation hosted  #TLCTransform Chat:  Pivoting, Partnerships, and Purpose During and After #COVID19, on May 20th, 2020.  An expert panel joined a diverse cadre of patients, clinicians, advocates, and other breast cancer stakeholders in an exploration of a care environment disrupted by COVID-19 and what’s being done to meet the needs of patients. 

The Panel included:

  • Tiah Tomlin, Co-Founder and Executive Director, My Style Matters @MyStyleMatters2
  • Maimah Karmo, President, Tigerlily Foundation @Maimah
  • Jesus Anampa, Oncologist, MD, MS  @jesusanampa
  • Gil Morgan, Oncologist, MD 
  • @weoncologists 
  • Liza Bernstein, Patient Advocate @itsthebunk.

There was widespread agreement that the COVID-19 pandemic has shaped every aspect of how patients experience breast cancer, but direct patient care and psycho-social needs have been especially affected by disruption and adaptive responses. 

T1 The Pivot: the COVID-19 pandemic has forced us all to stop and adapt and do things differently, for better or for worse.

The pandemic finds each stakeholder with a mix of old and new responsibilities with diminished certainty about how to get things done

Clinicians are responsible to provide care in the context of new personal risks and the possibility of covering patients for peers who might fall ill. 

The serious risks and strain posed by COVID-19 has disrupted the scheduling of tests and increased the use of telemedicine.

Creative and flexible approaches to treatment modalities help clinicians assure continuity of care for their patients. 

Lockdowns may give the impression that nothing is happening, or that life is canceled. Nothing could be further from the truth. Breast cancer doesn’t stop, and neither do Patient Advocates like @swaggsheila1

Advocates like Liza Bernstein continue their work with higher levels of personal stress and demands for their help. They rely on technologies as physical travel is off the table.

Some patients in treatment and recovery can’t do without the technology that supports their telemedicine and community support. 

T2 The Partnerships: with the COVID-19 pivots we just discussed, like with any difficult situation, we know that partnering is one way to find our way through.
The relationship with patients is why we’re here. We must center it in all that we do.

Partnerships improve the resilience of our work.

Advocacy groups should improve their efforts to reduce duplication and overlap as much as possible. 

Approaching partnerships with an abundant mindset goes a long way in our world.

T3 Our Purpose: When we encounter big changes, it often causes us to think about our purpose in life. Is this new environment of the pandemic transformative for you?

The pandemic is a tragedy, and it’s inappropriate to overemphasize its potential as an agent of change without keeping that in mind. Each pivot and every hard won drop of resilience comes from human suffering. The depth and diversity of our chat’s participants engaged this challenge by offering a clear vision of a better healthcare system shaped for the better by the lessons of COVID-19. This system is more compassionate about trauma, more equitable in terms of social determinants of health, and responsive to the desire for telehealth. 

We find our purpose in the circumstances we face. Big moments call for big efforts.

COVID-19 reminds us that compassion is the center of all that we do in this space.

Working to reduce resistance to wearing masks and other essential public health measures is an important community based way to manage stress for immunocompromised patients. Changing our culture is the help.

We all rely on meaningful connections to receive care or carry out our work. The pandemic is challenging us to bring our best selves to this moment in new and authentic ways.

Participants concluded by sharing their purposes in ten words or less: