what are the top 5 things people can do to prepare?
During a recent phone call arranged by the National Organization for Rare Disorders (NORD) to help members prepare for healthcare reform, Secretary of Health and Human Services Kathleen Sebelius told a story that any rare disease patient or caregiver can relate to.
It was about a nurse,whose name is Cathy Stoddart. Her son was born with heart defects that required multiple extensive surgeries. Stoddart and her husband both worked and had insurance coverage, but each surgery resulted in thousands of dollars of out-of-pocket costs. To save their son’s life, they used credit cards to pay the bills, which ultimately drove them into bankruptcy. Today their son is alive and well and going to nursing school, but the Stoddarts’ credit history was damaged in a way that people in rare disease communities will be able to avoid in the future, thanks to healthcare reform. Read More
Having faced death, Dave asked himself what he’d do with his “free replay” in life.
If you haven’t heard of Dave deBronkart, popularly known as e-Patient Dave, you soon will. Diagnosed in 2007 with Stage IV, Grade 4 kidney cancer, Dave learned it had metastasized to both lungs, several bones, his tongue, and his median survival time was 24 weeks. Using the Internet, he learned everything he could, joined an expert patient group on ACOR, built a social network on CaringBridge and shared his online medical records with anyone who could help.
He beat the odds.
Having faced death, Dave asked himself what he’d do with his “free replay” in life. He became a healthcare blogger and joined the e-patient movement, where he’s one of the most outspoken advocates for patient engagement. He has been featured in US News & World Report, Time, Health Leaders and interviewed on CNN.com. Dave is also a Founding Co-Chair of the Society for Participatory Medicine and has a healthcare consulting practice.
e-Patient Dave recently spoke at CBI’s eMarketing event with Wendy White, Founder & President of Siren Interactive, and I took the opportunity to ask him 5 questions.
Today, far too many people under the age of 65 with serious medical conditions have inadequate or no access to health insurance.
Jason Ross, Project Manager at Siren Interactive, contributes this post:
Many Americans — especially those with rare disorders — are denied coverage by many health insurance companies. According to a recent national survey, an estimated 12.6 million non-elderly adults were discriminated against because of a pre-existing condition in the previous 3 years. In fact, 36% of those who tried to purchase coverage in the individual insurance market were turned down, charged a higher price, or excluded because of a pre-existing condition. So, what does this mean? This means that adequate health insurance is unavailable to millions of Americans, especially to those who need it the most.