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!”
Still, by the time Medicare finally granted approval – after at least five denials lodged by a variety of doctors over a long period of time – Packer’s condition had deteriorated. At that point, her team of physicians, respiratory therapists, nurses, rheumatologists and other medical professionals were anxious for her to begin the experimental treatment.
“You have to be sick enough to need the treatment and strong enough to withstand them,” she notes. Presently, Packer and her team are preparing to begin the stem cell transplant that will set the complicated medical trial in motion.
The treatment costs about $25,000, Packer says. Even with medical insurance, not everything will be covered. Her team has launched a GoFundMe page to help cover expenses, including care for her family members. “People have been more than generous,” she says. “The most beautiful part is that I’m here today and I can spend time with my kids. It’s a bittersweet thing.”
The timeframe of treatment and recovery depends upon which organs are involved, she says. Once the plan is approved and they have the funds, preparation for the stem cell transplant will require daily injections to draw cells from her bloodstream so that they can be filtered and then returned to the body.
“Once the cells are withdrawn,” Packer says, “the most difficult and painful part of the trial will begin.” She will be given extremely toxic chemotherapy drugs in very high doses for 10 days. “They want to do a reboot of the immune system so that it operates in a cleaner, healthier way as red blood cells enter the system and, hopefully, work normally.”
Thus far, she notes, results are promising. But it won’t end there. “If I survive that, then it is on to healing, recovering and getting on the list for a double-lung transplant,” Packer adds. Though she will still have scleroderma, if the cells are working properly, they will slow the disease so that she may survive for a significant period of time.
Packer remains a passionate pro-life spokeswoman, advocating for compassionate treatment of patients with terminal diagnoses. It’s role that began after she spoke about the proposed law for the first time at a Servite High School event. In the months since then, her position has never wavered.
“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.