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  • Writer's picture"Our Lives Matter"

"We CARE About Rare Lives"

When the footage of George Floyd's murder went viral, disenfranchised communities all around the world decided to finally stand united against the violent, often abusive, nature of the dominant status quo. In unison, the global community of marginalized people of color (POC) virtually cried "Our Lives Matter!" The shear number of people who began to march, rally, protest and challenge the previously uncontested social ideologies of racism, colorism, sexism, ableism and classism put Diversity, Equity and Inclusion (DEI) on the marketing map. Businesses quickly realized that diversity is good for business. Unfortunately, most businesses chose the route of tokenism and check-box solutions, ultimately establishing "diversify" as an industry-based buzz-word. Several organizations managed and run by white executives saw DEI as an easy product that they simply whip up without much thought and sell to industry as a check-box solution. The rare disease ecosystem is no stranger to this latest phenomenon and while some have chosen to work directly with community-based DEI experts, others have decided to remain in their comfort zones, tasking detached corporate PR and marketing specialists with developing the appearance of valuing and understanding the dynamics of diversity and inclusion. The rare disease community of color witnessed several organizations choose tokenism in the hiring of professionals of color with no rare disease experience, nor significant historical knowledge, and assigning them a DEI title. Others decided to go as far as to hire black-branded organizations to create "imperatives" and "consortiums" commissioned by the industry's white executives in an effort to re-package, existing community-based programs, as a check-box solution that have no real world impact. This unfortunate dynamic of not taking DEI seriously has increased the levels of distrust and disconnection for industry stakeholders and partnerships felt by global communities of color.

In September of 2020, RAM's "Our Lives Matter" Diversity, Equity, Inclusion (OLM DEI) initiative launched the first unLearning program of its kind, in an effort to identify sincere patient advocacy organizations and biopharmaceutical industry stakeholders for trusted partnership and collaborative projects.

Summary of outreach data:

  • 500 biopharmaceutical companies and 4 rare disease nonprofit organizations were actively informed of the "Our Lives Matter" call-to-action.

  • 432 biopharmaceutical companies acknowledged receipt of the "Our Lives Matter" call-to-action information.

  • 21 companies/organizations that were not originally contacted reached out directly to learn more about the OLM DEI Initiative within the months of January and February 2021.

  • 172 companies/organizations signed a Mutual Confidentiality Agreement (CDA) in order to receive an OLM DEI Initiative proposal detailing the community-based DEI programs available to them after introductory discussions.

  • 6 biopharmaceutical companies and 1 nonprofit organization openly expressed extreme disinterest in participating in "this type of program."

  • 54 companies/organizations expressed enthusiastic interest in participating but required a reference, listing which companies/organizations have already participated. The united community-based effort, to identify companies/organizations sincerely interested in DEI and respecting the rare disease community's perspective, established specific rules. One very important rule was that under no circumstances were the identities of any participating companies/organizations to be provided to incentivize participation. This rule was one of several implemented to eliminate those that are seeking DEI campaigns for the trend, as opposed to the lessons learned, and for the partnership opportunities that accompany successful completion of our program(s).

  • 579 collective hours have been reported by RAM's OLM DEI team between the months of October, 2020 and February, 2021 for communications with various rare disease stakeholders regarding the OLM DEI unLearning Initiative.

  • 12 companies/organizations, with a rare disease focus, signed their executive teams up to the unLearning program in 2021, and took the first steps towards establishing trust with the rare disease community. (Note: several academic institutions participated in the unLearning program as the unLearning program is capable of being adapted to the general healthcare DEI space as well)

The above summary of the outreach data shows that the rare disease advocacy environment, in addition to the biopharmaceutical sector, are frustratingly hesitant to embracing actionable DEI solutions developed by community-based experts of color. Why? Perhaps, it is because the executive leadership feels threatened by the professional unification of people of color, LGBTQIA+ individuals and intersex people of a variety of racial categories, all of whom have at least one rare disease. Or, it could be the fact that the launch of the unLearning program was exclusively funded by the rare disease community, without the influence of stakeholders from the industry and advocacy landscapes.

Whatever the reason, the real world community takes comfort in the fact that there are rare disease stakeholders who see value in participating in the OLM DEI programs, the first and only rare disease community-based DEI research and training model developed by a collective of 58 rare disease experience experts with a diverse blend of identities that include but are not limited to people of color, LGBTQIA+, intersex individuals, and a handful of sincere allies.

Developing the OLM DEI programs with only community-based resources, effectively denying all industry financial contributions, was a conscious decision. It was vital that institutional filters not be applied to the OLM DEI program designs. Several patient advocacy programs have been developed with industry funding and as a result have institutional filters built into the programs. These filters are often responsible for failed clinical trial recruitment goals, burdensome clinical trial protocols, the currently and historically siloed rare disease advocacy landscape, and the repetitive half-hearted duplication of authentic community-based initiatives that result in significant hurdles to bringing life-saving therapies to the market.

In order to truly serve the best interests of the naturally diverse real world rare disease community, statements in solidarity must be backed through the support and implementation of meaningful actions that benefit the collective community. The only way to know if a DEI solution is meaningful to the collective community is through authentic community-based partnerships and the establishment of sincerely mutually beneficial collaborations with community-based experts.

The OLM DEI Initiative is committed to identifying rare disease stakeholder groups who are trustworthy and ready to work with the naturally diverse people of the rare disease community.

Our Lives Matter, a message deployed by RAM's OLM DEI Initiative, is the first, and currently only, community-based educational DEI program developed and deployed by rare disease people of color, rare disease LGBTQIA+ individuals, rare disease intersex people, allies and others to provide insights that are required to begin the process of healing and working towards establishing much needed trust, irrespective of the historical practices of exploitation and manipulation that are still being practiced to date.

The real world rare disease ecosystem is naturally diverse. The OLM DEI Initiative is designed to work with sincere stakeholders interested in diversifying the advocacy, academic and industry landscape by making resources and opportunities equitably accessible, irrespective of socioeconomic capabilities.

The global people of the rare disease community would like to thank each stakeholder that chooses to take meaningful steps towards progress by answering the "Our Lives Matter" call-to-action. We see you. We hear you. And we want to collaborate with you to improve healthcare for the people of the global rare disease community.

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