From the moment in 2012 when she was diagnosed with a terminal illness, Stephanie Packer has tried to remain realistic. She is optimistic but doesn’t attempt to give her husband and four children false hope for a cure. She realizes the best treatments for her condition, the autoimmune disease scleroderma, may take her life rather than extend it.
So when Packer followed up with her insurance company in one of many failed attempts to obtain approval for participation in a promising clinical trial, she was flummoxed when a Medicare representative said the company wouldn’t approve the UCLA-based trial, but instead would charge just $1.20 for a medication to end her life.
It was a stark reminder of the far-reaching effect of the physician-assisted suicide bill signed into law in California last year, a law that Packer worked hard to defeat.
“I was just dumbfounded,” Packer recalls. “You won’t give me the medication I need to live but for a buck it’s OK if I go kill myself? I immediately got off the phone and talked to my mother, husband, girlfriends and doctors. True to my generation, I got on Facebook right away.”
After Packer shared the news of her latest medical hurdle, reporters from all over the country contacted her for comment. As one of the handful of documented cases of terminal patients being offered life-ending medication instead of expensive medical treatment, the young mother with the oxygen tank was a dramatic example.
Indeed, Medicare relented when headlines about the denial appeared in national publications such as the Washington Times, she says.
When it comes to dying, “what the public isn’t told is that sick people have other options,” Packer notes, citing the work of palliative physicians such as Dr. Vincent Nguyen, a Newport Beach doctor dedicated to providing end-of-life care for people with terminal diagnoses. “In supporting the new law, they are backing something that could very easily take their lives sooner than they want. They are making it impossible for some people to live. It’s disgusting and sad.”
Once she had grieved over her terminal diagnosis, Packer says, she adopted a ‘new normal.’ “The moments since have allowed me to look at the world in a completely new way. What a beautiful opportunity!”
“As a Catholic, I trust my faith and know there are certain ways God would want me to handle things,” she says. “I believe God is our maker and our lives are not our own. We are given our bodies and our place in the world; everything that I am and have belongs to Christ.
“It’s my privilege to have this life and acknowledge these gifts,” she adds, “but they also are a burden that I must constantly evaluate and say, ‘are these the choices God wants for me?’”
Packer’s family, friends and community of supporters can follow her story at the fundraising site fundingmorality.com and gofundme.com/StephaniePacker.
Full story at Orange County Catholic.