Andrea Sloan is still seeking compassionate use from BioMarin to administer a drug doctor's believe could extend her life. Read her full statement below:
Statement from Andrea Sloan: Still Seeking Compassionate Use from BioMarin
Thursday, September 5, 2013
Since learning six weeks ago my cancer had returned, I have been focused on today, Thurs., Sept. 5. It’s been the day I had my heart set on being administered BioMarin’s breakthrough therapy BMN 673 – the drug my world-renowned doctors and I believe can extend my life. I’m still waiting. And I’ll admit I’m disappointed, but let’s focus on the positive.
I’ve spent the past two days at MD Anderson Cancer Center in Houston undergoing tests and meeting with my doctors. The good news is my cancer is stable, which means that BMN 673 is still the BEST drug for me. However, tests revealed my symptoms are progressing. Timing is increasingly critical and I’ll return to Houston a week from today. It’s imperative that I have this drug by then.
When I learned that my only option to gain access to the drug was through a compassionate use exemption, I did not know how challenging and time consuming a journey it would be. But I did know this issue lacked a national dialogue. I felt compelled to take action – not just for me, but for others like me – to affect meaningful reform in improving access to life-saving treatments.
I live in Texas – a big state with open spaces. And I love spending time on the ranch – a place that makes me want to expand my reach and offers panoramic perspective. I’m also an American – land of the free, home of the brave. We pride ourselves on our pioneering spirit.
BioMarin embraces that spirit. They are a company that pushes the boundaries of science. They experiment in hopes of making new discoveries that can help people like me. And by creating new therapies like BMN 673, they give people hope. This is an amazing gift. I am so grateful to them for the innovative work they are doing. In fact, I want to help propel them into the next frontier. I understand the risks. I’m willing to take them. And I know that whatever they learn from me – regardless of the outcome – will be valuable knowledge in service to the greater good.
BioMarin, progress demands partnership. And I am a willing partner. While the path to progress often encounters barriers, those barriers are erected by humans, and can be obliterated by humans. Together, we can lead by example. We can show what happens when people collaborate to find a solution. We can get to work on changing a broken system.
I recognize the importance of weighing the risks and the myriad of considerations they face as a company. However, this is a risk worth taking. I will thank them. My family will thank them. And my amazing army of loyal supporters and the more than 26,000 people who have signed our petition – and to whom I owe a debt of gratitude – will thank them.
In America, we do not leave our wounded warriors on the battleground. BioMarin, please be the cavalry that saves me.
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