About a month ago, maybe less, I was interviewed by a reporter with Bloomberg News. The reporter was writing a story about research conducted by Biomarin on what are being referred to the science industry as treatments for dwarfism. Biomarin is a pharmaceutical company based in California that develops medicine for "rare diseases." Evidently, in the world of science, or at least within this particular realm of science, dwarfism is a rare disease. According to the article, Biomarin has a new drug for dwarfism that is ready for human trial. Mice trials were successful. (I wonder if the mice were transferred to the rat lab after the trials.)
While short stature is the most obvious visible affect of dwarfism, the new biomarin drug is not actually intended to affect a person's height. Rather, it is supposed to address other health issues common in people with achondroplasia (the most common type of dwarfism), such as sleep apnea, bowing of the legs, and compression of the spine.
The story ran a little more than a week ago, on January 23. Little People of America knew that phone calls from reporters writing about this type of treatment would be coming at some point. Back in July of 2011, at the LPA National Conference, a few individuals with connections to companies such as Biomarin attended the event. They were excited to share news about emerging treatments.
While Little People of America is primarily and a support and resource organization, and has nothing to do with research, individuals and organizations may continue to approach us, perhaps for guidance, perhaps for human trial participants, perhaps for public support. In mid-February, the Little People of America Board of Directors is scheduled to talk about the issue of so-called "dwarfism cures" at a meeting. Though the meeting probably won't allow enough time for LPA to develop a position statement on the issue, the meeting will at least afford some time for individual members to share their thoughts. Hopefully, those thoughts will lead to some organizational clarity down the road.
As an individual with dwarfism, and as an officer with LPA, it's hard to figure out a good approach. On one hand, would I, as a little person, be better off today, or would I have been better off when I was a child, if I have to endure the leg surgeries and the back treatment that were required as a result of my dwarfism. Would others in my situation be better off?
On the other hand, why should an individual with dwarfism have anything to do with an industry that treats dwarfism as a disease and people with dwarfism as a commodity. Plus, is it ethically correct to pursue drug treatments that cost hundreds of thousands of dollars. Treatments that, even if they did work, would only impact a tiny fraction of the community. So many people with dwarfism will tell you that the real obstacles they have to face in life have very little to do with medical complications. Rather, they have to do with social prejudice, and to some extent physical barriers in the environment. With this in mind, in the spirit of Ed Roberts -- a pioneer of the disability movement and of the social model of disability -- rather than changing individuals with dwarfism to make them supposedly more healthy and less diseased, wouldn't it be more productive, and more healthy, to invest our resources in creating a better, more accepting, and more accessible community.
Who knows. But as technology moves forward, it will be interesting to observe how the dwarfism community responds.