Image by Raphael Lovaski

Rare

Black

Lives

Matter

Too

An Original RAM Collaboration that evolved into a global initiative

The socioeconomic fallout from the COVID-19 pandemic has hit America hard, particularly people of color disproportionately. Because people of color tend to make less than their white counterparts, they are less likely to have the financial resources to outlast the recession brought on by the pandemic and have systematic barriers to health care, as a direct result of deep rooted institutionalized oppression. 

 

America’s institutionally racist and biased systems have generated a snowball effect of oppressive barriers that continue to oppress generations of black people. This historical system of oppression was ultimately exposed to the world through the COVID-19 pandemic. Black people are more likely to forgo necessary medical care as layoffs continue and essential workers are forced to risk their lives without being provided the appropriate Personal Protective Equipment (PPE). Historically, black people are at greater risk of losing their homes to foreclosure and eviction; and as a result of historically being forced into the lowest socioeconomic class, the black collective has resorted to using the local emergency rooms to access medical care. Preventative health care is a luxury and privilege that most black people do not have access to, resulting in an extensive host of pre-existing conditions. It’s not surprising that, nationwide data collected show that deaths from COVID-19 in the black community are two times greater than the percentage of the population they make up. And in most states, this rate is even higher. 

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For black people born with at least one rare condition or have a child with at least one rare condition, the obstacles are even greater. Most rare diseases  black people suffer several years undiagnosed, especially when there are no known familial genetic disorders that have been previously identified. For those with known familial genetic disorders, obtaining the treatment needed to treat debilitating symptoms, like chronic pain, is a well known obstacle amongst the rare disease community of color. Several rare disease people of color (those with the most melanin-rich skin suffering the most) have learned to distrust the healthcare and biopharmaceutical industries, as a direct result of several historical injustices committed by researchers, like the Tuskegee Syphilis trial. Historically, rare disease people of color were victims of brutal medical exploration, lynching shows and European-based side shows. The historical implications of having melanin-rich skin or of having black ancestry, has resulted in people of color to this very day not being invited to participate in clinical trials or included in clinical research. Because most natural history studies and clinical trials do not include people of color, the black community lacks access to vital genetic information, directly impacting the ability to develop targeted treatment options and affecting our overall understanding of genetic conditions on a global scientific scale.

For the stakeholders in the rare disease space, especially those in executive leadership positions, this moment in time has called for thoughtful pause and self-reflection. Most people that enter the rare disease space professionally are well intentioned, seeking to improve and extend the lives of those suffering from chronic conditions. Despite these good intentions, many, particularly those who racially classify as white, have either implicitly or cognitively perpetuated the racist structures that make the U.S. inequitable.  

Several American industries have proposed incorporating an "equity lens" into its corporate structure in order to meaningfully combat hidden racial and gender biases. The truth of the matter is that racial, gender and disability biases can be found at the core of almost every American industry, disproportionately impacting people of color, people with disabilities, people of the LGBTQI+ community, and any other individual that does not fit into the established status quo of the heterosexual white male. However, every single one of the proposed DEI (diversity, equity, inclusion) solutions that have been marketed by the rare disease advocacy environment has been developed by the white collective who created the racially siloed environment to begin with. We are even seeing some "DEI programs" being endorsed by paid people of color (effectively reinforcing the status quo through tokenism). 

 

Despite being approximately 13% of the U.S. population, black people constitute only 5% of all doctors and 10% of nurses. Within the American rare disease landscape, black patients frequently report experiencing neglect and blatant disrespect from biased, anti-black lives, emergency room doctors (irrespective of their racial classification), often resulting in an exacerbation of the patient’s medical condition and overall decrease in quality of life. Some patients of color even lose their lives as a result of the racial biases of emergency room doctors. "Our Lives Matter" DEI Initiative research has uncovered that the educational system that produces emergency room doctors effectively teaches all doctors, including non-white doctors, to value the lives of white patients over the lives of black patients.  

 

America is a multiracial society in desperate need of meaningful, authentic, community-based initiatives and DEI programs that allow for the inclusion of all variations of human-kind. The black rare disease community is in desperate need of practitioners that take their medical claims seriously, despite the amount of melanin that is responsible for the complexion of one's skin. 

 

Unfortunately, the American healthcare industry is not the only industry in need of restructuring. Housing assistance, education, food and judicial industries all have work to do in order to break down the racial barriers that have caused American society to violate the basic standards that all of its residents have agreed to follow and abide by.

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In accordance to the principles of the U.S., as declared by the Declaration of Independence, “all men are created equal”. Unfortunately, members of the black community have not been treated equally in accordance with the principles of the American society, all because of the natural variations in color of human skin. As a result, society must step up and embrace DEI strategies that establish equitable access and distribution of resources and opportunities, coupled with respect and admiration of the strength people of color have had to acquire in order to survive such hostile anti-non-white environments since the hostile colonization and annexation of native people and the brutal abduction of African people. This is a humanitarian issue that can no longer be ignored.

 

Regardless of ethnicity, skin color has been the main determining factor as to how an individual is treated in America. While the experience of having darker skin can only be truly understood by melanin-rich people, several white people have joined the efforts of the Black Lives Matter movement as allies. However, in order for the day to come when the color of one’s skin no longer triggers others to behave in ways that result in shorter life-spans, unwarranted shattered dreams, premature deaths and unjustified murders, white allies must join the movement in action, not just solidarity. White allies must not support DEI P.R. campaigns and DEI themed events that are developed, hosted and managed by the white collective. White allies must not encourage the duplication of DEI educational programs that have already been developed by the communities of color they claim to support. White allies must speak up to those attempting to resist diversification and hide behind DEI buzz words and DEI themed shell programs.

The Rare Black Lives Matter Too RAM Collaboration launched in May of 2020, evolved into the "Our Lives Matter" DEI Initiative in November of 2020 and has grown to serve as a sanctuary for the global rare disease community of color. Until the establishment of the "Our Lives Matter" DEI Initiative, the rare disease community of color was abandoned, neglected and kept hidden. Only a handful of people of color were allowed to engage in the advocacy community, as tokens, in an attempt to appear open to the concepts of diversity. Unfortunately, the practice of tokenism is still being utilized today by rare disease advocacy executives and a select number of people of color are knowingly embracing the role, regardless of the negative impact on the greater global community of color.

 

Knowing and studying the dynamics of tokenism and how it was used historically to combat authentic efforts to unify the human race, the "Our Lives Matter" DEI Initiative was thoughtfully designed to challenge historically reinforced racialized systems, without being coopted by industry-based stakeholders determined to reinforce the status quo. each contributor to the "Our Lives Matter" DEI Initiative is determined to support programs that contribute to the real world diversification and inclusive access to resources within the rare disease community.

 

The "Our Lives Matter" DEI Initiative has developed meaningful solutions designed to guide rare disease stakeholders (including but not limited to nonprofit-based advocates, industry-based stakeholders, government organizations and policy makers) to understand the real world experiences of the naturally diverse people of the rare disease community from a community-based perspective.

 

Currently, there is a distasteful DEI trend that has taken over the patient advocacy landscape. Nonprofit advocacy organizations and rare disease-focused biopharmaceutical companies, alike, are participating in the act of tokenism and blatant refusal to embrace authentic solutions designed by the people of the rare disease community of color.

 

The real world, community-based, people of the rare disease community have had enough. The "Our Lives Matter" DEI Initiative has become the official safe-haven for disenfranchised groups of people within the rare disease landscape that seek to actively unify in strength for meaningful change.

The "Our Lives Matter" DEI Initiative is 490+ strong and growing as of February 2021. For those organizations and companies that refuse to acknowledge the importance of valuing the humanitarian qualities and goals we espouse and unapologetically demand, rare disease people of color will continue to refuse the accommodation of the status quo established by the dominant white collective's attempts to reinforce systemic oppression. 

 

As the "Our Lives Matter" DEI Initiative continues to work in collaboration with authentic individual allies, organizations and corporations, on paving the roads to recovery from the historical injustices that have imbedded deep roots of distrust to the disproportional impacts of the COVID-19 pandemic, the contributors and supporters of the "Our Lives Matter" DEI Initiative vow to be transparent, honest and unapologetic regarding the efforts to dismantle racist systems that reinforce health disparities and threaten the integrity of global advancements in therapeutic treatments.

 

Each contributor to the "Our Lives Matter" DEI Initiative has committed themselves to creating a more just future for all disenfranchised groups of people, starting from within the siloed, racially charged, rare disease advocacy community.  

The "Our Lives Matter" DEI Initiative calls on everyone to consciously choose unconditional love while utilizing their professional positions to actively raise awareness and/or implement meaningful DEI solutions, developed by the disenfranchised community in which they claim to serve. For the case of the rare disease community, the "Our Lives Matter' DEI Initiative is the only community-based network that has developed authentic DEI solutions for rare disease stakeholders. 

 

To all rare disease community-based experience experts, advocates, leaders and allies active (or wanting to be active) in the rare disease advocacy space, we hear you and are open to include you into our initiative and collaborations. To all the others, we are just getting started. The longer you wait to join the side of humanity, the more work you are going to have to do to earn our community's trust.

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RAM is a rare disease community leadership network founded on the premise of developing mutually beneficial collaborations between rare disease community leaders, influencers, experts and other rare disease stakeholders, with the goal of developing insightful publications dubbed RAM Collaborations. 

RAM removes toxic competition amongst community-based rare disease leaders, influencers and experts and replaces it with support, camaraderie and mentorship as patient advocacy professionals navigate the drug development continuum, regardless of which disease specific community one originally belongs to.  The RAM network encourages unity, collaboration, professionalism and support amongst the membership, embracing the concept, "a win for one is a win for us all".   ​