Trending News Today: Orphan Drug Act in Question

In 1983, former President Ronald Reagan signed the Orphan Drug Act into law, successfully motivating pharmaceutical companies to develop new drugs for rare diseases. However, a recent investigation by Kaiser Health News revealed the system is being manipulated by drug makers to maximize profits and protect the niche markets for medications that treat millions of individuals. According to Kaiser, the pharmaceutical companies are not breaking the law outright, but instead are using the Orphan Drug Act for their own personal gain. Since the law was implemented, more than 200 companies have brought almost 450 orphan drugs to market, however, many of the orphan medications come with a large price tag. According to the Kaiser report, about one-third of orphan drug approvals have been either for repurposed mass market drugs or drugs that received multiple orphan drug approvals. “What we are seeing is a system that was created with good intent being hijacked,” said Bernard Munos, former corporate strategy advisor at Eli Lilly and Co, who reviewed the Kaiser analysis. “[It’s] quite remarkable that it has gone on for so long.”

The AIDS Drug Assistance Program’s switch in pharmacy and enrollment contractors has resulted in enrollment delays, and left some patients without timely access to medical care and necessary medications, California Healthline reported. The AIDS program helps more than 30,000 low-income patients with HIV and AIDS pay for medications and insurance premiums, but since the switch in July, clients and service providers have reported multiple issues with the program. According to Healthline, patients have been turned away from pharmacies, been forced to postpone medical procedures, and have been dropped from the program altogether for no reason. Furthermore, the online system that is used to enroll applicants was shut down in November after security breaches, and is still not up and running. Enrollment employees and potential clients are forced to send applications by fax for the time being, but there have been regular reports of issues in getting the documents through, Healthline reported.

The IRS is sending personalized letters to an estimated 7.5 million individuals who may be uninsured, warning them about the health insurance penalty, according to The New York Times. Under the federal health care law, individuals who do not sign up through HealthCare.gov, could be hit will hundreds of dollars in fines. This year the penalty could be $2085 or more, depending on family size and income. The Obama administration is relying on these IRS reminders to help sign up as many individuals as possible before open enrollment ends January 31, 2017.