Patient Advocacy Groups

Many Autoimmune Disease Patients Struggle With Diagnosis, Costs, Inattentive Care

Despite the prevalence of autoimmune conditions, like the thyroid disease Hashimoto’s, sometimes finding help can prove frustrating as well as expensive. There are often no definitive diagnostic tests, so patients may rack up big bills as they search for confirmation of their condition and for treatment options.

Podcast: KHN’s ‘What The Health?’ Reading The Tea Leaves In Blue Wave’s Wake

In this episode of KHN’s “What the Health?” Mary Agnes Carey of Kaiser Health News, Margot Sanger-Katz of The New York Times, Alice Ollstein of Politico and Anna Edney of Bloomberg News discuss the impact of House Democratic leadership elections and their impact on health policy; as well as efforts by the Trump administration to address high drug prices and ensure the safety of medical devices. Plus, Julie Rovner interviews KHN’s Jay Hancock about the latest “Bill of the Month.”

The High Cost Of Hope: When The Parallel Interests Of Pharma And Families Collide

Desperate for help in finding a lifesaving drug for a fatal genetic disease, families banded together to fund early research and then worked with drug companies on clinical trials and marketing. Yet, this small patient advocacy group is stunned by pharma’s pricing.