I recently spent a week in Washington DC representing Myasthenia Gravis, an autoimmune disease I have, for Rare Disease Week (yes, that’s a thing). I was also lobbying Congress on upcoming healthcare bills as a patient advocate. The state of healthcare is very exciting on the Hill right now, and the bipartisan support many bills are receiving is helping them pass quickly.  Unfortunately, this is also a very political year which means many won’t make it thought just because it’s a very political year. 

You can truly make a difference in your own life and health, and I will show you how later.  It’s really easy.  Just a couple of clicks and you are done.

Here are some down and dirty statistics you may find surprising.  There are currently over 7000 rare diseases recorded and over 30 million people in America currently have one. That’s a lot of people which makes rare diseases not so rare.  50% of those with one are children who won’t live to the age of six. Unfortunately, only 5% of all rare diseases have a treatment protocol.  One of the reasons for this is because it cost almost a billion dollars to bring a new drug through clinical trial.  Only about 12%  make it all the way through the process so developing a drug for a small population isn’t cost effective to pharmaceutical companies.

Now for the good news…Sort of

In July of 2015, the House of Representatives passed the 21st Century Cures Act by a wide bipartisan margin (344-77).  Among other things, this bill gives new funding to the NIH and FDA, allows for the repurposing of already researched, existing drugs for rare diseases since most use off label drugs anyway since they have none of their own.  It also advances research for neurological diseases, and refocuses drug development on the patient.  This Act has the potential to speed up treatments by decades.  Then it stalled in the Senate.

Here’s the part that could kill you:

Part 1:

The Senate started picking the 21st Century CuresAct apart, scheduling three different hearings at various times to pass individual provisions and bills. Speculation is that they don’t want to see it passed under President Obama’s term so they are slowing it down. Sadly, Congress only meets for 10 days in March and has all of August and October off.  At the rate of their attendance, countless people will have died because our legislature is on vacation.

Part 2

We can either get involved in our own healthcare, or risk dying by lack of attention.  It’s that important. From what I’ve heard from Congressmen, staffers, and other advocates, those regulating our lives in Washington really do listen.  I personally spoke with my local Congressman regarding two bills I am deeply connected with and as a result, he cosponsored both giving them a boost in credibility and making them one step closer to becoming a law.  So did my Senators.

It’s time to make ourselves heard.

Some of the components in the 21st Century Cares Act, have been pulled out as stand alone bills to get them passed quicker.  Although they aren’t as strong as the entire Act, they still have merit and are worth our involvement. Unfortunately, they can easily disappear if we don’t help them get pushed forward. There are 8,863 bills currently under review.  It’s easy for them to get lost in the shuffle. If you want to support any of the bills below, you are just a click away from having a major impact. I made it even easier by giving you the links to find your legislator and send a letter (some are pre-filled) for each bill. You can also click on their links to get more information about them.

These bills are currently under review in the Senate:

  • Family Caregivers Act (HR 3099) – Maximizes childhood cancer survivors’ quality of life, moves childhood cancer research forward and helps kids get access to life-saving treatments. To send a letter of support for this bill to your Congressman CLICK HERE
  • The Advancing Hope Act (S1878) – amends the Federal Food, Drug, and Cosmetic Act to expand the priority review voucher program for rare pediatric diseases and includes treatment for pediatric cancers.  CLICK HERE to support this bill
  • The Open Act (S.1421) – extends by six months the exclusivity period for a drug or biological product approved by the Food and Drug Administration (FDA) when the product is additionally approved to prevent, diagnose, or treat a rare or orphan disease.  To send support of this bill to your Senator CLICK HERE
  • Medicare Home Infusion Site Act (S275) – will allow Medicare patients to receive ongoing infusions at home instead of the hospital.  This is at a $93 million savings to taxpayers and also prevents infection exposure in the patient . To send a letter CLICK HERE

Congressional staffers count the letters received and report back to their members on a daily basis. The more they get, the more they pay attention.  Get their attention now.

You made it!  See I told you it wasn’t that bad.

For those who choose to make a difference in there world and sent a letter, I would love to hear how it went and who you sent one to.  I’ll bake some cookies in your honor as a thank you.

 

 

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, and prove you can be well without perfect health. 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.

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