The Chronic Disease Coalition was invited last week to participate in a patient round table hosted by Congresswomen Suzanne Bonamici of Oregon. The topic of the round table discussion was “Health Care Protections.” Several organizations were represented at the round table discussion in addition to the CDC, including the American Diabetes Association, Cystic Fibrosis Foundation, Alzheimer’s Association, Juvenile Diabetes Research Foundation, Latino Health Coalition and the Pancreatic Cancer Action Network. Here are three takeaways from that meeting:
1. Protecting patients with pre-existing conditions is of utmost importance. Everyone attending agreed that laws prohibiting insurance companies from dropping or denying coverage for patients with pre-existing conditions must be maintained and even strengthened. It was noted that this issue, assuring coverage for patients with pre-existing conditions, is one of the few that enjoys strong bipartisan support.
2. Even with protection laws, treatment access is still at risk. Insurance company tactics that utilize loopholes in existing law, tactics like step therapy (fail first), co-pay accumulators and denial of charitable financial assistance, were also discussed at length. Congresswoman Bonamici said that a growing number of congressional members are aware of these loopholes and tactics, and are committed to addressing the problem through legislation.
3. Patient advocacy and patient stories are key. Congresswoman Bonamici and her staff were very interested in hearing about patient advocacy and patient stories. She noted that patient stories are one of the most effective and necessary tools for making or maintaining good public policy. At the round table, we heard powerful stories about parents and spouses with Alzheimer’s Disease; a daughter and a granddaughter with diabetes; a grandson with cystic fibrosis; and the story of a dad of four teenage daughters who suffers from pancreatic cancer. It’s for these patients and their families, and millions others across the country with similar but unique stories, that the Chronic Disease Coalition will continue its fight for patient rights.
