. >> reporter: but that view has not deterred nancy goodman, patient advocate, who after her own son,ob, died created kids v cancer, an organization promoting drug access and development for children. >> the most serious obstacle, frankly, is the relatively small size of the market for pediatric cancer and other pediatric rare diseases. we have to find ways in our society to either give companies a reason to come in this market or really pour in significant government resources into developing these drugs. >> reporter: nancy goodman also points out how difficult it can be for families to apply to the drug company for compassionate use. >> companies don't have on their websites a little button, you know, click here to apply for the compassionate use program. they don't have a stated policy as to what their timeline will be for turnaround. >> reporter: in desperation, some parents turn to social media. the idea is to get people, anyone they can, to support their efforts in getting the drug that they want from the drug company. and there is now some legislative action supporting this cau