Too often rare diseases such as tardive dyskinesia (TD) are treated with medications and therapies that were made for other illnesses.
This occurs pre-diagnosis, by physicians who have never seen a patient with the rare disease before, AND post-diagnosis because there are simply no other options.
When you are not treating an illness specifically, and instead only its symptoms, there’s no way to expect real progress in a patient’s well-being or quality of life. When new anti-psychotics were introduced to the market, many researchers believed they would be effective for tardive dyskinesia (TD) as well. That simply was not the case.
Chlorpromazine was the first treatment used in the United States to treat schizophrenia, introduced in 1953.
Since then, those suffering from tardive dyskinesia have been advocating for a therapy that will help their specific diagnosis. For years, TD patients lived without a targeted therapy.
Now, things are changing.
It’s 2017 and we finally have a drug. Its name? Valbenazine.
The drug is expensive, as most are nowadays. Unfortunately, the cost for medications used to treat rare diseases are always exponentially greater than those for more common illnesses.
But, despite its cost, its existence alone is progress for the tardive dyskinesia community and the rare community as a whole.
The more coverage one rare disease receives, the greater the chance medical professionals will begin to more prominently examine other rare diseases. That means progress for one is progress for all.
As members of the rare community, we would find our own treatments if we could. Unfortunately, we rely on the expertise of those in the medical field. Progress may be slow, but it is coming for those with rare diseases.