Many rare disease patients understand the financial burdens of living with a rare disease. As the therapies are only supporting a small number of patients, the price tag is often exorbitant.
Cystic fibrosis (CF) is one of the conditions that comes with a high cost, both physically and financially.
CF is a rare genetic disease that leads to progressive respiratory damage as well as damage to the digestive system. Mucus builds up in the systems of patients trapping bacteria and clogging up airways.
Patients may face-
- Breathing issues
- Frequent infections
- Lung damage
- Persistent cough and shortness of breath
- Stuffy nose
- Male infertility
A group of cystic fibrosis patients have recently come together to file an official complaint against the cost of their treatments. They have filed this complaint directly with the United Nations.
Specifically, this letter has articulated that the Vertex Pharmaceuticals (VRTX) therapeutic price tags are a violation of their human rights. The price tag, in addition to its policies for distribution, make access to the life-saving treatment difficult for patients.
Patients say Vertex has gone against the public health standards illuminated by the UN Human Rights Commission in 2000 which state that health is one of the fundamental human rights of life.
The ultimate goal is that the UN will directly investigate Vertex and publicly publish findings which can help all CF patients advocate for a more affordable price tag for their treatment.
The more voices there are behind a movement, and the more authority those voices have, the more likely it is that actual life changing outcomes will result.
You can read more about this official complaint and the financial plight of rare disease patients here.