Alisa knows how lucky Justin is to have medication available that keeps him healthy and active but also knows that more treatment options are needed for himself and future patients. If for some reason Justin’s current medication could no longer support his health, they may have nowhere else to turn. That’s why every single day Alisa prays for a cure – or at least another treatment – to be discovered for ALD.
As an advocate for her son and for others with rare diseases, Alisa is concerned about proposals in Congress that could disrupt our innovation ecosystem and slow the development of new treatments and cures. Specifically, she worries government price-setting policies could prevent life-changing therapies from being available to patients entirely or restrict patient access to existing treatments.
For Alisa, knowing researchers and scientists are pursuing new treatments and a cure for ALD gives her hope for a brighter future for Justin, and the last thing she wants to see are misguided policy proposals rob her of that hope.