Erika Zak has spent the last four years battling advanced colon cancer and only a liver transplant will save the young mother’s life.
Surgery to remove as much of the cancer as possible left her with a fist-sized hole in her liver – but Erika’s insurance provider denied her coverage for the transplant.
The insurer called the surgery an ‘unproven’ treatment – despite a letter from Erika’s doctors insisting that it was not only a valid course of action, but the only shot she would have at survival.
For the past five months, Erika, 38, has fought back the denials, watching her body fall apart as her liver failed, she told CNN.
Finally, her third and most scathing letter to UnitedHealthcare has changed the company’s mind: Erika found out last week she will get a new liver and a chance at seeing her daughter grow up.
Scott Powers (left) and his wife Erika Zac (right) have been fighting to get her a liver transplant to save Erika’s life from the cancer she’s been battling since their daughter, Loïe was born
Erika has had only a few healthy months with her daughter, Loïe.
Shortly after Loïe was born four years ago, Erika was diagnosed with stage 4 metastatic colon cancer.
Erika was only 34, fighting cancer for the second time in her life and suddenly unsure if she would even live to see her daughter’s first birthday.
Tumors were surgically removed from her colon, and she began chemo treatments.
But disaster struck during microwave ablation surgery that targeted the cancer that had spread to Erika’s liver.
The procedure is supposed to use heat to precisely attack the tumors but something went wrong and a hole was cut into Erika’s already-damaged liver. Her bile ducts were ruined, too.
Now, due to the damage to her liver, she has developed dilated blood vessels that frequently bleed. In the last year, she has been in and our of the hospital with 19 stays.
Every sign of bleeding or fever is cause for panic in the Zak household.
Her doctors worry constantly that any infection will kill Erika.
Erika is beautiful, but you can see that she is sick. Her green eyes are ringed with yellow – jaundice, a common symptom of liver failure.
Bile drains into ostomy bags outside Erika’s scarred abdomen. Most of her liver is already dead, and she has lost 20lbs in the last 12 months.
In a last ditch attempt to stop Erika’s cancer last year, she was given an experimental immunotherapy, which worked wonders for her.
Every three weeks, Erika travels to the hospital her her home in Portland, Oregon for the treatment.
She can survive the cancer, but her liver is only going to get worse.
All 100 physicians that have treated Erika have echoed the same thing: They don’t know when, but without a new liver, she will die.
For the first time in four years, Erika will have a fighting chance, if she can get the new liver.
She and her husband, Scott Powers, met with a Cleveland Clinic transplant team for evaluations in December and January.
Erika has been in the hospital 19 times in the last year due to complications of a surgery to remove tumors from her live that the 38-year-old mother had in 2014
At the beginning of February, she was given the go-ahead from the doctors. They put her on the waiting list for a liver.
The family’s elation didn’t last long. Their health insurance company declined to cover the transplant.
UnitedHealthcare, the nation’s largest insurance company, claimed that a liver transplant was not a ‘promising’ treatment for her condition.
Despite her doctors’ claims otherwise, the insurer said that her liver failure was due to toxicity from chemotherapy, suggesting that a transplant would not save her.
Erika was devastated. Feeling as though she had no hope for survival, she started researching Oregon’s Death with Dignity program.
She wrote a sweet, gentle letter to say good bye to her daughter. But then she penned a very different one to the CEO of UnitedHealth.
The insurer was unmoved, denying her again.
Patients are typically on transplant wait lists for between 12 and 36 months and only 7,000 of the 20,000 Americans on that list are expected to get new livers this year.
Time was running out for Erika to fight, and the insurance company had already delayed her progress by two months.
In early April, Erika wrote yet another letter to UnitedHealtcare, this one even more scathing than the last.
She railed that their treatment of her case was ‘shockingly incompetent,’ and pleaded for her life.
Erika told CNN that she wrote to the company: ‘Given that my life hangs in the balance based on this review.
‘It is unconscionable that it has not been undertaken with the level of competence and professionalism anyone would expect of UHC.’
Erika was diagnosed with stage 4 colon cancer just three months after Loïe was born. Immunotherapy is keeping the cancer at bay, but without a new liver she will not survive
As she waited, for something to happen, Erika got sicker, developing a high and persistent fever.
Twice the insurance company set deadlines for when they would finish reevaluating her case. UnitedHealthcare missed both of them.
Dr Andrew Cameron, head of transplant surgery at Johns Hopkins University told CNN that it is ‘exceedingly rare’ for insurance companies to decline to cover a liver transplant.
But Erika’s doctor at the Cleveland Clinic, Dr Federico Aucejo, is one of a very few surgeons who is trying to perform transplants on patients like Erica, who have difficult-to-treat metastasized tumors on their livers from colon cancer.
Outcomes for these kinds of procedures have historically been poor. During the 1980s and 1990s, less than 20 percent of these high risk liver transplant patients survived for more than five years after the operation.
But Dr Aucejo hopes to change that with a new approach.
When UnitedHealthcare finally called Scott the news was the same as ever: They were still refusing to cover the operation.
‘Honestly, you know that is messed up,’ Scott told CNN he said to the representative that called him.
‘I don’t know who you’ve got to go to, but I would go to someone now and have someone call us, because this is so messed up,’ he said.
Even the representative admitted to Scott that he was surprised by the denial, and did not entirely understand it.
Erika sat by while her husband was on the phone, trying to gather herself. Finally, she grabbed the phone from Scott.
‘Hey!’ she yelled into the phone.
Scott and Erika recently celebrated Loïe’s fourth birthday, but Erika worried it would be the last she would spend with her little girl
‘This is Erika, and you’ve never heard from me before. You don’t know what we’re going through. Because I’m dying,’ she told CNN.
The representative told them Erika and Scott they could send still more information about her case – a familiar line.
In the course of their fight with the insurance company, the couple found out no one had ever even called Erika’s oncologist in Oregon.
There was little reason to think they would listen now.
Yet, the following week, on May 7, Scott got another call from the insurer. UnitedHealthcare had changed its mind, inexplicably, and was agreeing to cover Erika’s transplant.
They quickly spread the word to Erika’s family, friends and doctors, and started packing.
Erika, Scott and Loïe are moving to Cleveland, so that as soon as there is a liver for her, there won’t be another moment of delay for Erika.
Liver failure is ranked with a MELD score between six and 40. The closer to 40 a patient is, the more desperately in need of a liver they are and the higher priority they are given on the transplant list.
Erika’s score is around 22. She may still have months of waiting, but she could also take a turn for the worse and quickly deteriorate.
Celebrating what she thought would be her last Mother’s Day this weekend, Erika found herself crying, surrounded by her little girl and husband.
‘I can’t imagine not being here. It’s not because I keep the family together or anything. It’s just the love I have for them,’ she told CNN.
Loïe asked her mother why she was crying and Erika replied, simply: ‘I’m crying because I love you.’
If Dr Aucejo’s surgery is a success, Erika could have many more Mother’s Days with her family.
Because her case is ‘new territory,’ Dr Aucejo hopes that it will help to provide an example to insurance companies that patients like Erika can be saved and should get their best shot at survival as soon as possible.
‘No one should have to fight and work that hard, especially when I have all these doctors saying it will save my life,’ Erika told CNN.