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Andrea Sloan, the Right to Try and A Fight Not Finished

Andrea Sloan, the Right to Try and A Fight Not Finished

“Some say good things come to those who wait, but I know the best things come to those who go out and find them.” Andrea Sloan

 

I found Andrea Sloan in August of 2013, in her office at the Texas Advocacy Project, where she was the Executive Director. I’m writing about her now for many reasons, first among them being that she was one of the best humans I have ever met.

 

She used her education and skills as an attorney to lead a non-profit organization that provides free legal services to people who are victims of domestic violence, stalking or sexual assault. She could have continued her career working for a big law firm, making more money than she could ever spend. But she chose to change her course and that should tell you a lot about her.

 

We met that August day for an interview because Andrea was in a literal fight for her life. The kind most of us couldn’t imagine. She was in year seven of her battle with ovarian cancer. And that damned cancer was back. And she was only 45.

 

“My life matters,” she told me that day. “To me and to a lot of other people.”

 

And maybe it was unprofessional, and you didn’t see it on TV, but I cried with her during that interview. Because something about her made you feel her pain. Made you put yourself in her shoes. Made you want to fight like hell with and for her.

 

The only hope to prolong her life, her doctors said, was a safe but experimental drug, which a drug company refused to give her even under compassionate use, citing concerns about safety and effectiveness. It was confusing to Andrea and those who loved her because the drug was headed in to Phase 3 trials and had been highly touted by company executives for its results in the first two trial phases.

 

I reported several stories about Andrea in the Summer and Fall of 2013, sharing mostly just the facts. But I’ve never shared how she impacted my life in the very short time I was so lucky to know her.

 

I think everyone who knew her will tell you she was a magnet. Something about her wide eyes and her smile and her laugh. They drew you in. And she listened. This woman was an extraordinary listener. She didn’t have to be. I mean, she was looking at certain death without the experimental drug, and even if she got it, the outcome was far from certain, even if the odds were better. But she listened about important things and trivial things and you just wanted to talk to her and really know her and be her best friend.

 

Our second meeting came a few weeks after the first, in Lometa, Texas, at the ranch belonging to the parents of her actual best friend, Michelle Wittenburg. This time, we did the interview in her favorite place in all the world— on horseback. She graciously allowed me to ride her beloved Heathen.

 

 

But those few weeks could have been a lifetime. She was still fighting to get the drug, and there was a marked difference in her health and appearance. She was slow to catch her breath and slower with her words. And she was so thin. That was the day I took this photograph.

 

 

And still, that day, both of us sitting on the ground under a tree, she told me, “I am NOT going to die of ovarian cancer. I just know it, the way you know things.”

 

Almost five years later, I still hear her saying those words.

 

Ultimately, Andrea received another experimental drug, also a PARP inhibitor, from another drug company. But really, it was too late. The drug was having its desired effect, but she had been waiting for too long and her system was fragile and weak.    

 

And four months after we met, she died on January 1, 2014, from pneumonia. 

 

Michelle called me early in the morning.

 

“Shannon.........”

 

And that was all she needed to say. And we cried.

 

As journalists, we’re not supposed to get involved in the stories we tell. But there was something about this woman. Something about her fight. Something about her that just drew you in. Drew me in. She was everyone’s sister. Everyone’s daughter. Everyone’s aunt and best friend. And yet, she was one-of-kind, too. A light. And you didn’t want this light to go out. And you could see yourself in her.

 

And so when she was robbed of so many of her years, the people who loved her couldn’t allow the fight she started to end. And what happened to her just simply could not happen to anyone else.

 

So Michelle— and many others— fought valiantly for the passage of “Right to Try” legislation in Texas, and we told the story every step of the way. And my husband and I were so proud to watch as the Andrea Sloan Right to Try Act was signed in to law in Texas.

 

 

And just this year, less than five years after Andrea’s fight for compassionate use began, Right to Try became the law of the land for all Americans. 

 

 People with a terminal illness or a chronic disease must still follow protocol, but there are systems and procedures in place so they have greater and faster access to experimental drugs that could save or prolong their life.

 

But the fight continues. And now it involves adult stem cells, an experimental treatment that gave Andrea a three year remission.

 

Michelle and many others pressed on, now fighting to expand Right to Try laws in Texas, to include adult stem cell treatments. Their efforts led to the passage of Charlie’s Law in 2017, named for former State Representative Charlie Howard, whose last hope to live was an adult stem cell protocol only available outside the U.S.  

 

He died of cancer when he couldn’t travel out of the country to get the treatment.

 

The law allows patients with chronic diseases or terminal illnesses the right to try adult stem cell treatments.

 

Charlie’s Law is now serving as a model for other state legislatures to debate access to experimental adult stem cell therapies not yet approved by the Food and Drug Administration. After all, our own cells are not drugs and shouldn’t be regulated as such.  

 

We know from experience that calling your lawmaker helps change hearts and minds on this issue. I hope you will call yours.

 

After many years of research and reporting, of listening and reading, traveling to Washington, D.C. to talk to lawmakers about Right to Try and Compassionate Use, I have formed a personal opinion, based in fact, and also out of empathy.

 

If a patient is dying or suffering and there is something out there that could extend their life or ease that suffering, and the patient understands the risk, not allowing that treatment is simply cruel.

 

One of my favorite Andrea-isms was her resolve to wake up every day and “choose joy.”

 

She always posted inspiring messages on her social media and her positive spirit in the face of so much adversity amazed me and so many others. In fact, I go back and read her words from time to time.

 

There’s one, I like to think, she wrote just for me (even though we didn’t know each other when it floated off of her fingertips).

 

“Note to me,” she wrote. “The amazing thing about chasing your joy is that along the way, you end up out running your fear.”

 

Yes, my sweet friend. We did. Your life mattered. It matters still.

 

#BeAGoodHuman