A shorter version of this article by Faith in Healthcare’s editor first appeared last week in Sojourners:
It was when Sa’Ra Skipper was at her lowest point, staring death in the face every day, that she realized God’s presence in her life. Skipper was away from home at college, and had unexpectedly lost coverage for the daily insulin she needs to treat her Type 1 diabetes. The cost of that insulin had climbed to the point where the monthly cost of her medicine and supplies was over $1,000. Skipper didn’t have that kind of money. She didn’t have anything close to that kind of money.
So she took a fraction of her prescribed doses, starved herself to keep her blood sugars low, and went to bed each night afraid that she may not wake up in the morning. Her fear was well-founded. With a vial of insulin that cost about $6 to make being priced as high as $300, new studies show that one in four Americans with Type 1 are forced to ration their insulin due to cost. That rationing has led to multiple recent deaths, including several young Americans like Skipper.
Yet, somehow, Skipper did wake up each day. “At the time, I did not have a great relationship with God,” she says. “But there is no way I should have survived that period. The fact that I lived showed me that God is real, and that I still had a purpose to fulfill.”
Photo Credit: John P. Cleary of the Anderson Herald-Bulletin
When her struggle to afford insulin forced her to drop out of college and look for work in Indianapolis, Skipper found that purpose in a most unexpected way. Last December, a local television station posted on Facebook a story about a young Cincinnati woman with Type 1 who had died from rationing her insulin. To the Indianapolis media, the story’s local angle was that the city’s top corporate presence, Eli Lilly and Company, is the leading U.S. manufacturer of insulin. But Skipper noticed the post and typed out a quick comment about the crisis impacting many of the city’s residents as well. “This is the sad reality some of us have to face,” she wrote.
Soon after, a reporter from the TV station messaged Skipper, asking her to share her story on camera. The resulting interview was widely shared, and led to Skipper being connected with the Type 1 diabetes patient advocacy group T1International. Suddenly, the 24 year-old Skipper was testifying in front of her state legislature, being interviewed by national media including NBC News and the New Yorker, and being asked to speak to church and community groups.
In July, Skipper was invited to give testimony to the U.S. House of Representatives Oversight and Reform Committee. In a somber but clear voice, she talked about the periods in her childhood when her mother struggled to afford the insulin needed by both Skipper and her and her younger sister, Shelby, who also has Type 1. Rep. Ayanna Presley asked about a particular time when the girls’ mother lost her job. Skipper took a deep breath, and paused to compose herself. “Things started to spiral out of control,” she said. She disclosed that the burden her disease was imposing on her family led her to contemplate suicide. “I didn’t know whether me and my sister were going to be able to make it.”
By the time Skipper finished, several members of the committee were in tears. One had to pass on her turn to pose questions until she could compose herself. “Sa'Ra is both bold and passionate in sharing how her personal story illustrates the horrific and deadly situations that patients face because of the insulin price crisis,” says Elizabeth Pfiester, executive director of T1International. “More than that, she calls others to take action and use their voice to make change. Sa’Ra is the epitome of the power of patient advocacy, and T1International is so grateful to have her as a leader in our movement.”
Building Faith Community Support
As part of her new-found leadership role, Skipper will be presenting later this month on a panel about Type 1 and persons of color as part of T1International’s first-ever national workshop. It is a conversation she once thought could never occur. “Growing up, I thought Shelby and I were the only black children in the world with diabetes,” she says. “But it turns out our community is hard-hit by this disease, not to mention the cost of surviving it. It’s important that those of us who are impacted step out of the shadows and speak about what is going on.”
In the midst of Skipper’s high-profile advocacy, the daily struggle continues. She now has a full-time job with insurance, but the policy includes a large deductible that forces her to rely on free samples and donations for her insulin and supplies. Sometimes, she still has to share doses with Shelby. It is a workaround that carries real danger for them both: after Shelby recently under-dosed to preserve some insulin for Sa’Ra, Shelby ended up in the hospital with diabetic ketoacidosis. “Because I could not afford to purchase my full supply of insulin, my sister almost lost her life,” Skipper says. “This just is not right.”
Skipper, like many lawmakers and other advocates, places much of the blame for the crisis on her hometown corporation. Eli Lilly has raised the price of its insulin more than 1,000 % since the late 1990’s , reaping billions in annual profits along the way. “My life has been at the whim of this company since I was diagnosed at age 5,” Skipper told the Congressional committee. “Eli Lilly’s refusal to control the price of the drug I depend on has wreaked heartbreak and havoc on my life, my sister’s life, and those who care about us.”
Since the T1International workshop is being held in Indianapolis, Skipper is coordinating local clergy’s presence at a companion vigil to remember those who have lost their lives due to insulin rationing. For some local clergy, Skipper’s invitation is a challenging one. The vigil will be held outside Lilly’s corporate headquarters, and many have congregation members connected with the company. Others regularly seek donations from Lilly Endowment, which has deep ties to the pharma corporation.
All of which makes Skipper grateful that her congregation at Crossroads African Methodist Episcopal and her pastor Rev. Jerry Davis have been supportive of her advocacy at every turn. Her very first TV interview was conducted at her church, and Rev. Davis will deliver an invocation at the vigil. Although some Indiana faith leaders have ducked Skipper’s invitation, several have agreed to accompany her pastor at the event. “I am so excited by the faith community engagement in the cause,” she says. “It reminds of me about all I have heard about the civil rights movement, where clergy were on the front lines and many of the actions were planned in churches.”
As for Skipper, she may have come to her advocacy role only recently, but she knows she is in it for the duration now. “As patient advocates, we have to stay in this fight as long as it takes, because our lives literally depend on it,” she says. “And as persons of faith, we are commanded to be there for each other.
“I was surprised to be called on to be a voice for others like me—this is never a role I envisioned for myself. But if we support each other and demand an end to this suffering, who knows what change we can accomplish.”
Faith and Healthcare Notes
Americans Are Paying Attention. The pharmaceutical industry that puts Sa’Ra Skipper’s and others’ lives in danger due to price-gouging is the most poorly-rated industry of all, according to this new Gallup poll. 58% of Americans rate pharma corporations negatively.
Healthcare Providers Deserve a Living Wage. It is hard to imagine a more important profession than caring for ill or aged persons in their own home. And home healthcare providers are in big demand. But they are usually paid very low wages. And, in a sad irony, these workers often struggle to get and keep health insurance to pay for their own care needs. To learn more about the push for fair wages and benefits for home care workers click here.