Save LPA from Takeover by Big Pharma!
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Earlier this month, the Board of Directors of Little People of America, the world’s oldest and largest support and advocacy organization run by and for Little People, announced its decision to accept funding from pharmaceutical companies actively developing “therapies” and “cures” for various kinds of dwarfism (including, but not limited to Achondroplasia). We believe this is a serious mistake that puts the integrity of our organization and the very existence of dwarf culture at risk because of undue influence from big pharma.
We believe that this action directly contradicts LPA’s mission, especially the call for “improving the quality of life for people with dwarfism throughout their lives while celebrating with great pride Little People's contribution to social diversity.” This is because these unnamed pharma companies are primarily motivated by the profits they will gain by developing “therapies” and “cures” aimed at normalizing dwarf bodies, not celebrating them.
We reject the Board of Directors’ justification that this funding will somehow foster a richer dialogue between LPA’s membership and these corporations. While open dialogue should be considered, it is not necessary to have these companies recognized as official sponsors of LPA or any of its events for such dialogue to occur. It is implausible that accepting funding from big pharma will give LPA more influence over their business decisions. Rather, accepting this money puts the independence of LPA’s decision making at risk of being influenced by the priorities of pharmaceutical business interests.
This funding is a bad bargain that puts dwarf culture’s very existence at risk; a culture that celebrates LP bodies and the full lives they enable us to lead. In fact, our national conference should be the one place where Little Person youth can be free from the constant societal message that they are in need of being “fixed,” but visible sponsorship from pharmaceutical companies shatters that safe space where our children can exist on their own terms.
We are also perplexed by the Board’s statement that their recent actions are in line with a desire to remain neutral about the health care decisions of its members. Neutrality toward the individual medical decisions of members is a laudable goal, but such neutrality is in no way promoted by accepting sponsorship money from those producing these controversial interventions. Establishing a relationship of financial dependence on pharma diminishes the board’s neutrality toward these biotech companies by binding LPA’s fiscal interests to the financial success of the drugs produced.
Furthermore, we dispute the Board’s characterization of these corporations as “healthcare companies” since their products are only being tested for their effectiveness at generating greater height in children with achondroplasia (to our knowledge, bone length/height is the primary outcome measure of every current pharmaceutical study targeting Achondroplasia), rather than addressing the current healthcare needs of the majority of LPA’s membership (adults with achondroplasia, children and adults with other skeletal dysplasias) or the barriers to accessing medical care that our community faces.
Finally, while we appreciate that LPA needs to prioritize its fiscal health and cannot be responsive to any and every objection a member may make to potential sponsorship partners, we see accepting monies from companies that are actively seeking profit from the eradication of our community and culture by normalizing our bodies as a bright line that should not be crossed.
Thus, we demand:
1) The immediate return of any dollars received from any pharmaceutical company that is developing a “therapy” for any kind of dwarfism that will result in increased height.
2) The immediate and complete transparency with LPA’s membership of any agreements that were made on our behalf by LPA’s Board of Directors with any such companies.
3)The immediate amendment of LPA’s bylaws to forbid the acceptance of any kind of future sponsorship donation from any such company.
4) A public letter notifying all LPA membership of this change.
We call upon all of our allies who value the rich dwarf culture that LPA has created to join us in making these demands, especially members of LPA and the Dwarf Community.
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