In response to controversy, a group of Colorado lawmakers is abandoning a bill that would have required a new state board — which is chartered with setting caps for the cost of medicines — to create exemptions for rare disease drugs.
Instead, the lawmakers introduced a watered-down version to require the Prescription Drug Affordability Board to consider different uses of any medicine with a so-called orphan designation, which refers to treatments for rare diseases. The new legislation would also allow another state entity, the Rare Disease Advisory Council, to review such drugs in hopes of giving more voice to patients.
The original bill was introduced over concerns that patients may lose access to rare disease drugs if companies halt sales or decide not to invest in developing such medicines. Often, these treatments — which target small patient populations of 200,000 or less people — carry high price tags, which the pharmaceutical industry argues simply reflects large investments for testing and development.
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