In the last few weeks, you have probably seen my posts on Twitter, Facebook and Instagram about HR 971, the OPEN ACT. After meeting with Congressman Bilirakis and discussing the bill, I am throwing 110% of my efforts behind making sure it passes. 


During my discussion with Congressman Bilirakis, we touched on a few important parts of HR 971

  1. It provides an additional 6 months of exclusivity to drug makers, allowing them to recoup costs associated with providing the drug to rare disease patients
  2. Allows doctors to provide potential life saving treatments to rare disease populations without the stigma and constraints brought on by “off-label” use
  3. Opens the door for data collection that can lead to new treatments and potential cures for rare diseases
  4. Creates new jobs and opportunities in Biotech

I am living proof that repurposing drugs deemed safe by the FDA can radically change the lives of rare disease patients. If not for Rituxan, my days would be spent in and out of the lab and infusion center receiving band-aid treatments to keep my platelets up. I would never be able to live a normal life under those circumstances and I would potentially be putting my life in danger between treatments as my body would continue to destroy platelets. Right now, I am able to do pretty much everything I was doing before May 1st, 2014.

There is no reason why HR 971 shouldn’t be passed. It can revolutionize Biotech in ways we can’t even imagine. The OPEN ACT will give patients and doctors the tools necessary to explore not only life saving treatments, but the chance at a strong quality of life. I have been in dark places thanks to Immune Thrombocytopenia, and I can say with certainty that I would be severely depressed and possibly deceased if I wasn’t able to give Rituxan a chance to help me find my “new normal”. I never expected to get my old life back, I knew that wouldn’t happen. However, I felt that if I gave it a shot, I could say I tried and continue fighting another day.

Every rare disease patient deserves the right to have the same conversation with their doctors to improve their quality of life. 

In the next few weeks, I will be calling on all rare disease patients, caregivers and friends to write to their congressional leaders and request that they support HR 971. It is imperative that we get this bill passed as time is not on our side. The sooner we allow the re-purposing of drugs, the sooner we can find cures for the over 7,000 rare diseases affecting Americans today. 

I lived a normal, healthy life for 27 1/2 years, until one day it was taken away from me. I refuse to be a victim of Immune Thrombocytopenia. While I embrace my new identity as a Rare Disease Warrior, I will not allow my condition to prevent me from living life to the fullest.

Every rare patient deserves the same chance that I had.

2 thoughts on “HR 971 The OPEN ACT

  1. The doctors have their hands tied by the Departments of Energy, Commerce, and/or Justice when it comes to helping patients make informed choices in regards to their quality of care. Would you leave it to the “elected” officials to legislate which drugs are acceptable in treating “specific” diseases? The medical doctors are set to that task, not the legislature, to correct the unnatural imbalances to our immune systems causing these sporadic maladies throughout life. We need groups of doctors, to make evaluations, based upon worldwide scientific studies of their peers. Not legislative decisions hindering our rights to choose a health provider or adjunctive therapy “outside” of mainstream medicine. Individual corporate hospital systems lack full disclosure of all treatment methods in use.

  2. Thanks for your comment Mark!

    Congress doesn’t want to control what drugs patients receive, but they are concerned about over-regulation and overreach by the FDA. That’s why the 21st Century Cures Initiative can really help put the power back in the hands of doctors on the front lines of treating rare diseases. There have been a lot of behind the scene issues with the FDA and a lack of synergy with them and the rare community. This legislation is a step in the right direction. At the end of the day, treatment options should be discussed and decided between doctors and patients.

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