A couple of months ago, I met Monica Roa in Washington DC to discus whether we could team up to deal with the issues facing many of the Colombian families - the lack of institutional and government support, the refusal by many of the insurance companies (called EPS in Colombia) to provide them with palliative medication (tetrabenazine, antipsyhoctics etc) even though they have a right to do so under Colombian legislation. Similarly, there are no family planning and reproductive programs aimed at decreasing the incidence of HD in vulnerable communities. Because of all of this, I contacted Monica, a human and women's rights lawyer from Colombia living in Spain, to see if she could help. This article (click HERE) is the first she has written about the issues, and we plan to travel together to Colombia to organize a legal strategy to protect the patients.
Please read it, and thank you Monica!