It started with a 131-character tweet sent Tuesday afternoon.
“All hell's about to break loose. BCBS DENIED Lorelei's transplant. No words for how angry I am. I guess it's cheaper to let her die,” Andrea Decker said via Twitter.
Decker's frustrated tweet came after she and her family learned that Blue Cross Blue Shield of Oklahoma had denied her daughter a cancer therapy that they say would save her life.
The family began a Twitter campaign using the hashtag #ApproveLorelei. Several Oklahoma residents sent hundreds of tweets, using the hashtag to express their feelings regarding the Oklahoma insurance company's decision.
And Wednesday afternoon, the Deckers found out Blue Cross Blue Shield had changed its decision and was told the cancer treatment was approved.
Lorelei Decker said she will not stop with her own fight and is calling for change.
“They can't just give people the runaround because the people they're giving the runaround are so tired of fighting cancer and so tired that they just feel defeated and quit,” Lorelei Decker said. “And that's why this is never public — because it is so hard to fight cancer that it's too hard to fight insurance, too.”
Hilarie Houghton, a Blue Cross Blue Shield of Oklahoma spokeswoman, said she could not comment on a specific case, citing state and federal privacy laws concerning medical records.
“We have an established medical review process to ensure that our members receive appropriate, necessary and effective care,” Houghton said in a statement. “In general, the process may include predetermination/preauthorization, an initial review policy determination by an internal medical doctor, a peer-to-peer review (a discussion between the member's doctor and a Blue Cross doctor to exchange pertinent information) and an appeals process that offers a clinical review by a specialty doctor, often a third party.”
Houghton said Blue Cross Blue Shield respects the roles of its members and their doctors but must “adhere to the plan certificates and regulatory guidelines that direct us regarding coverage decisions, determining what therapies are of proven efficacy, and evaluation of unusual therapies.”
About her cancer
Lorelei Decker, an 18-year-old Oklahoma City resident, was diagnosed with Hodgkin lymphoma during the second semester of her senior year at Putnam City North High School, when she was 17.
Hodgkin lymphoma is a cancer of lymph tissue found in the lymph nodes, spleen, liver, bone marrow and other sites, according to the U.S. National Library of Medicine.
Most people diagnosed with Hodgkin lymphoma are treated successfully through treatment. The five-year relative survival rate for patients with that type of cancer has increased dramatically from 40 percent in whites from 1960 to 1963 to 86.3 percent for all races from 2001 to 2007, according to the Leukemia and Lymphoma Society.
But Lorelei Decker's cancer has been resistant to chemotherapy and other treatments, and she has yet to go into remission, she said. She has a tumor across the middle of her chest.
Doctors at MD Anderson, a premier cancer center in Houston, recommended she undergo an allogeneic stem cell transplant. The transplant would use stem cells from her older sister to replace Decker's immune system.
“If I don't receive this treatment, I will die — that's the bottom line,” Lorelei Decker said. “If I don't receive this treatment, cancer will kill me.”
Blue Cross Blue Shield originally denied the coverage, citing that it wasn't “medically necessary,” she said.
Lorelei Decker attributes much of the reason that the insurance company changed its mind to the hundreds of tweets and Facebook posts that people from Oklahoma and several other states made.
Wednesday, she had more than 1,900 followers and had gained about 200 Twitter followers over 24 hours.
“Typically people don't fight on social media or don't publicize the issues that they're having issues with insurance coverage, and it's just up to them to call and reapply or mail it in, and it's all on them,” she said. “But when there is a level of publicity there, there's a level of urgency to defuse the situation, and so you're kind of put on the front burner, finally.”
Even more expense
Even though Lorelei Decker will likely get the treatment, the denial-approval scenario still comes with a cost. The family had booked its hotel rooms, flight and rental cars, but canceled all arrangements after the news of the denial.
A trip that would have cost about $1,000 will now cost them about $3,000. For some, this might not seem like a big jump. But Andrea Decker lost her job as she stayed home to help Lorelei with her cancer, the family has a son in Afghanistan and another daughter in college.
“It was very painful to have that happen — plus we still have to pay medical bills,” Andrea Decker said.
Lorelei Decker said it's frustrating to know that she isn't the only one who has had to fight for insurance coverage. Without her family's support, she said she wouldn't know what to do.
She said even though her fight might be over, she wants to spread awareness about others with similar battles.
“I'm fortunate to have parents and a community who loves me so much that they are willing to fight for me, and they know their voice is powerful because human life is valuable, and they're willing to fight for that,” she said.