In the mean time, some states are trying to cap out-of-pocket expenses for prescriptions and other medical costs. Medical advocate Muilenburg says helping families pay for prescriptions will also help them survive.
"And if you don't take these drugs regularly, your cancer comes back, or you get sick, or you die," says Muilenburg.
These specialty drugs are often used for chronic conditions like cancer, HIV, MS, and kidney disease.
According to one report, 57 million Americans rely on specialty drugs.
These medications account for about 1% of total drug use, but 17% of drug spending.