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Joline Gutierrez Krueger '95-now
Monday, October 12, 2009
Kendra's Therapy Decision Reversed
By Joline Gutierrez Krueger
Journal Staff Writer
You can hear the weakness, the frustration, the fear in Kendra Lucero Claeson's voice, her determination dulled by too much pain, too much waiting and too little air through lungs that are stiffening into stone with each passing day.
She is tired, and she is tired of all of it.
Seven weeks have passed since we met this 30-year-old Albuquerque mother of three who is battling an aggressive, rare and deadly form of scleroderma called progressive systemic sclerosis, an incurable autoimmune disease that turns skin to leather and internal organs to useless rock.
It's a nasty way to die.
But it's another battle, one pitting Claeson against Presbyterian Health Plan, that has boggled my mind and outraged many of you.
In January, Presbyterian chose not to authorize the continued use of Rituxan, an expensive anti-cancer drug she had been treated with since fall 2007 with marked success. The insurance folks — physicians other than the ones treating her — decided the drug was medically inappropriate, based on their clinical protocols.
For Claeson, losing Rituxan felt like a death sentence.
For many of you, it felt unfair, cruel and another example of a sick health care system.
You protested on street corners, wrote letters of anger and concern. You donated money, gifts and support to Claeson and her family. You prayed.
Well, folks, looks like those prayers have been answered.
Presbyterian has reversed itself and approved Claeson for Rituxan treatments.
She underwent her first dose Oct. 2, eight months after her last treatment, although the official approval wasn't finalized until a week ago today, hours after I called to inform Presbyterian folks that I was writing an update on the case.
Not that this stunning reversal had anything to do with public pressure and bad publicity, though Presbyterian Health Plan President Dr. Dennis Batey admits both came at him in abundance.
"We received our share of letters. I think that's a safe statement," he said.
Rather, the decision was based on three key elements in an evaluation process Batey insists is working, albeit slowly in this case.
Element 1: After her former rheumatologist — the one who initially signed off on the Rituxan — retired, Claeson went through two rheumatologists before finding one late last month willing to reconsider the Rituxan treatment.
Element 2: New tests done by Claeson's pulmonary specialist determined her lung functioning had been severely impacted by the disease.
Element 3: The specialist researched the medical literature and, lo and behold, found a study that showed promising results among scleroderma patients treated with Rituxan.
"The information was compelling, and, as a result, we approved the service," said Batey, who spoke about Claeson's case after she gave written authorization to do so. "We're very happy."
In addition, Batey said the health plan has approved Claeson for travel for a consultation with a leading scleroderma expert at UCLA once a few logistical issues are resolved.
All of which is a little perplexing to Claeson.
The study, from the University of Patras Medical School in Greece, is the same one Claeson said she provided the rheumatologists and others involved in the lengthy appeals process to win back her Rituxan.
Indeed, the study has been available online on "advance access" since May 15, well before being published Sept. 15 in the Rheumatology medical journal.
"This is not new," Claeson said. "I gave them this study, and they ignored it."
Claeson also said she wonders why it took so long to request the pulmonary tests; why she could not have simply continued with the Rituxan during the appeals process and until she could find a new rheumatologist; why despite having fairly good insurance coverage as a social worker for the state she has been allowed to deteriorate to the point where she must now use a wheelchair, carry an oxygen tank and sit helplessly by, unable to help her husband care for their children — ages 1, 4 and 13 — the way she wants to.
"It's tearing me apart," she said. "I have the fighting spirit in me, but lately I'm too weak to fight. I hate this."
She is now the 218th Presbyterian Health Plan client to receive Rituxan, more, Presbyterian officials say, than most insurance companies would cover. But she remains concerned about those among the 134 other patients who, like her, lost their Rituxan and thus their health, last winter who have not been given the media coverage and the same second chance.
"This is more than just about me," she said. "Other people are fighting for their lives and fighting their own health insurance to help them live."
But those are the bigger issues, and for Claeson that's a battle for another day.
"I'm not out to make somebody look bad, and I'm not out to make somebody look good," she said. "I'm out to stay alive. I'm out to stick around for my kids for a long time."
Maybe now she has a chance.
UpFront is a daily front-page opinion column. You can reach Joline at 823-3603, firstname.lastname@example.org or follow her on Twitter @jolinegkg.