Part 1- A Patients’ Perspective on Healthcare in America-The Good and the Bad Patient State of Union
Lisa D recently spent the week in Washington, DC listening to some staggering statistics on rare diseases. She was also lobbying Congress on upcoming healthcare bills as a patient advocate. At one point, she thought her head was going to explode with all the information that was downloaded into it. She took took detailed, patient worthy notes to give you the State of Union regarding your healthcare.
Bad News Listicle First…
- There are currently over 7000 rare diseases documented and new ones every year. Rare diseases are defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. Unfortunately, only 5% of them have a treatment
- Over 30 million people in America currently have a rare disease and 50 million Americans have an autoimmune disease making people with these diseases not so rare
- 50% of all those with a rare disease are children. Most wont live to the age of six
- At the current pace of research, it would take 2000 years to find treatment for current rare diseases
- It costs almost a billion dollars to bring a new drug through trial. Only about 12% of them make it all the way through
Now here’s the good news…
- There is a growing trend at the National Institute of Health (NIH) and the FDA to include patient advocacy in their studies (happy to have but why is that a new thing???)
- The NIH is focusing on precision or targeted medicine
- Research is looking more at families of disease instead of specifics which broadens the information to a bigger audience
- Doctors are shifting their research and processes to one of collaboration internationally
- The NIH is streamlining clinical trials to expedite the process and get rid of bottlenecks
- FDA doubled rare disease drug approval in 2015
Most legislation is bi-partisan and passing easily in the House, and rare disease issues are becoming a top priority in Congress because 10 percent of voters have them. Because they are spread so thin, the new FDA Commissioner has made beefing up his workforce a major priority. Major legislation is currently being considered that could revolutionize treatment for rare diseases.
Seriously this is freaking great. But we- YOU, ME, your MOM, We ALL can make a difference by getting involved in our own healthcare legislation. It’s not hard, and from what I’ve heard from Congressmen, staffers, and other advocates, those regulating our lives in Washington really do listen to our voices.
About the Author:
Lisa Douthit is the author of Amazon’s #1 bestselling book, Wellness Warrior – Fighting for Life in Fabulous Shoes and an Integrative Health Consultant who is passionate about healing from all perspectives. After struggling with multiple bouts of cancer and autoimmune disease, no one understands the physical, spiritual, and emotional rollercoaster better than she does.
As one of the 40 million American women currently suffering with an autoimmune disease, she made it her mission to have a voice for all those with an invisible illness that cannot, as well as share the understanding of lessons she learned to help us all feel and be better. She has a private Facebook Group called Wellness Warrior Tribe for all those with chronic illness looking for support and encouragement. For more out of the box thinking that is guaranteed to bring you joy, Like her Facebook Page here or join the tribe here.
