Why I Advocate: The Fight Isn't Over

When someone is diagnosed with a deadly illness, I think we can all agree that the only focus should be on the patient and ensuring they receive the best care possible.  The fight should be against the disease, not corporate bureaucracy.

When my late husband Patrick landed in the hospital after his first seizure, we had no idea what we were in for.  Aside from absolute ignorance of the disease of glioblastoma, we were about to face what was sometimes equally daunting: Patrick's insurance company.  At the time of Patrick's diagnosis, I was in my fifth year as an insurance defense attorney.  I had practiced in various fields (medical malpractice, insurance coverage, personal injury, workers' comp, etc.) so I was well-versed in insurance company policies and objectives.  I knew that denying requests for treatment was par for the course and that most of my job was essentially saying "no."  I was aware that keeping costs as low as possible was incentivized for claims adjusters.  Even with all this first-hand knowledge, it never occurred to me that the corporate behemoth would apply this model to someone battling a brain tumor with a five-year survival rate of around 5%.  No, the insurance company would do right by him... wouldn't they?

Just three short months before Patrick's seizure that eventually led to his GBM diagnosis, I woke up one Sunday morning to find him sweating with his head between his knees on the edge of the bed.  His face was ghost-white.  He was barely able to speak, but was able to get out that he was dizzy.  I tried to help him stand up and he stumbled to the ground.  I was terrified.  I asked if I should call 911, and became even more alarmed when he said yes.  That was the first of what would be innumerable ambulance rides, with me following closely behind in my car and frantically calling family on the way. 

When we got to the ER, Patrick's symptoms seemed to have subsided somewhat.  He continued to have severe dizziness when he leaned his head back or forward, but his cheeks had started to redden and he was not perspiring so much.  They did basic blood tests and when those came back normal, although there was absolutely no explanation of what happened, the doctors simply diagnosed him with vertigo and sent him home with a prescription for Meclizine, which is essentially an over-the-counter medication to treat motion sickness.  They did no CT scan, MRI, or any other diagnostic study to find out what caused his symptoms.  If they had, I suspect that they would have found the lesion that would be diagnosed as GBM soon thereafter, and realized that he was actually experiencing a focal seizure.  But no - this time, they shooed us out as quickly as possible, and I did not even realize that I could insist on more being done.  

Patrick was a life-long Kaiser member, so that was where he was first taken to the hospital in 9/2014 when he had his first grand mal seizure.  As I shared in an earlier post ("From Disaster to Tragedy"), his initial hospital trip resulted in a 72-hour medically induced coma to stop the seizures.  At that time, the doctors collaborated and decided that what they were seeing on the MRI was not a tumor and sent him home directly from the ICU after four days.  Less than a week later, he returned in another ambulance and this time a tumor was clearly spotted.  We were told that he would need to be immediately scheduled for brain surgery at another Kaiser campus in the Bay Area to remove the tumor.  And so it began.

Because of Patrick's psychotic episodes following his seizures, Kaiser's best idea for treatment was tying him down like an animal on his hospital bed and sedating him to the brink of unconsciousness.  It was absolutely barbaric.  On one occasion, his blood pressure dropped so low that it nearly killed him.  Had I not been sitting at his bedside constantly observing the beeping of the monitors, it probably would have.  I watched his numbers plummet and ran to his nurse, requesting immediate assistance.  I was brushed off but I did not back down, demanding she come look.  She looked at me, clearly irritated, before following me back to his room.  When she looked at the monitors, her eyes widened, and she ran for the doctor who hurried in and halved the dose of the sedative.  They all stayed close for the next few minutes while Patrick's pulse and blood pressure returned to normal.

I was not without sympathy for the nurses, doctors, or anyone within earshot of Patrick's room during his episodes.  He was extremely loud, violent, and as strong as the incredible hulk.  I remember when he bent the metal rail on his hospital bed like it was made of clay after waking up in restraints.  After he broke the bed, they brought in a replacement, and I watched three large male staff try to force the bent rail back into place to no avail.  (Patrick was quite proud of the picture of the bent frame that I took.  It was his favorite conversation piece with visitors.)

It was after the near-death episode with Patrick's blood pressure that I knew that we had to get Patrick out of Kaiser.  They refused to start his radiation until the seizures were under control, and no matter what combination of medications they tried, he continued to have them.  This was when I started requesting that Patrick be transferred to UC San Francisco, only 30 minutes away and one of the leading facilities in the country in treating brain tumors.  I was convinced that the doctors at UCSF could either figure out how to stop the seizures, or at least start his radiation while they tried.  Even with what little I knew about GBM at the time, I was aware that a delay in starting his radiation would make a quick recurrence all the more likely, and I did not want to take any chances. 

Even Patrick's care team was in agreement that they could not help him and recommended sending him to UCSF.  The insurance end of Kaiser, however, refused to allow Patrick to transfer, telling me that they would only pay of out-of-network treatment if there was some specific type of treatment or care that Patrick needed that Kaiser could not provide at their facilities.   This was the first of many experiences where Patrick's doctors and I conspired on how to get the care he needed provided by his insurance company.  His Kaiser doctor said that UCSF would have the ability to hook Patrick up to a continuous EEG machine to monitor his seizure activity, but there was another Kaiser facility in the Bay Area that had that type of machine.  Patrick was shipped off to that location where he remained for another week, enduring the same cruel and inhumane treatment all the while.

This was the third occasion where Kaiser hospitalized Patrick for at least eight days and discharged him in "stable" condition only to have him return after another seizure within 48 hours.  I had had enough.   I sat down and wrote a letter to Kaiser chronologically laying out Patrick's sub-par treatment course.  I used every single legal buzz word in my arsenal, from "bad faith denial" to "gross negligence," to lay out my case for Kaiser approving his transfer to UCSF.  It finally worked, and within 6 hours of giving the hospital the letter, Patrick was on a waiting list for a bed at UCSF.  

After three days on the list, a social worker came in and told me that Patrick could not get approved for the bed at UCSF because he had no insurance.  Apparently, Patrick's employer had mailed his COBRA healthcare materials, but we had not received them and did not know that he needed to elect to convert from group to individual coverage.  So, his insurance lapsed and he was kicked off the waiting list at UCSF.  I spent the next 36 frantic hours talking to his employer, their insurance company, their intermediary third-party administrator, the hospital administrators at Kaiser and UCSF, and Lord knows who else doing paperwork and overnighting checks to get his insurance reinstated and back-dated to the day it had been dropped.  All the while, Patrick was in the middle of an episode, screaming bloody murder every time I left the room.  Finally, it was sorted out and Patrick got back on the waiting list, but it was another six days before a bed opened up and he was able to transfer. 

I wish I could say that once Patrick got to UCSF the fight with Kaiser was over, but it was far from it.  Patrick's care team at UCSF was constantly having to justify why he needed to stay there instead of going back to Kaiser.  I remember once having a phone call with Kaiser's out-of-network manager who was telling me that Patrick would be transferred back to Kaiser the following day because their doctors could manage his care from now on.  Never mind that the UCSF physicians did not consider his seizure condition stable, or that they stated it would be detrimental to him to force another change in location where he would experience more confusion and likely compromise his already precarious mental state.  This manager was the coldest woman I had ever spoken to.  There was no empathy in her voice as I cried and pleaded for her to do what the doctors at UCSF were recommending.  It was not until I pulled the lawyer card and started using those buzz words again that she relented and agreed to approve him to stay for another week, when we would inevitably have to repeat this same drama again.  Which we did.  Over and over.

One of the cruelest abuses by the insurance system came about two months before Patrick died.  We knew that Patrick had life insurance through his employer, and I realized that we had never gotten any paperwork about it.  I contacted his employer, who again referred me to the TPA managing their insurance.  I was informed that along with the package of COBRA documents that had never arrived, there was information about how to maintain Patrick's life insurance  policy which had a hard deadline that had long since passed.  I was stunned, but was sure that there must be something that could be done about it.  Wrong again.  Even though we had not received the documents, the only duty of care that the insurance company had to meet was to prove that they put the materials in the mail.  After that, their responsibility was extinguished.  It did not matter that we lived in an apartment complex where the mailman frequently put things in the wrong mailboxes.  There was no requirement that the mail be sent certified so that there would be some sort of record of receipt.  It did not matter that Patrick had brain cancer and even if he had received the mail, would not have been able to read it or understand its contents.  All that mattered was their record of an envelope going out, and that's all it took to eliminate their liability for the three years of Patrick's substantial salary that should have been paid to his two adult children.  The absolutely callous lack of heart disgusted me.   

From the very beginning it struck me just how difficult it was to navigate the ins and outs of the insurance system.  It was sometimes almost impossible for me to know what to do, and I had been working for insurance companies for years!  It made me angry that claims adjusters were making decisions about Patrick's care instead of his highly specialized physicians.  What business did they have holding his life in their hands when they had no medical training?  Why did they not care what was best for him?  And what about all of the patients who did not have a loved one who was not only a lawyer but able to take a leave of absence from work to sit at their bedside day in and day out, advocating for their care?

After Patrick died, going back to work for insurance companies and defending their constant decisions to deny care became incredibly difficult.  Every time I found a technicality that would allow a client to refuse to pay for a CT scan, I thought about that visit to the ER when the doctors did not order one for Patrick and how that might have changed the course of his illness.  What if my winning brief defending a surgical denial was the reason that someone was never able to go back to work?  What kind of impact would that have on the patient's family and loved ones who were bearing the financial, emotional and physical burden of caring for the injured worker?  Don't get me wrong - there are plenty of people making fraudulent claims and treatment providers who overprescribe and scam the workers' compensation system, so the insurance companies rightfully need defense attorneys to operate as a check on these abuses.  I just could not stomach being one of them anymore.

Initially, my grief was so thick that I could not do anything outside of basic functioning and pretending to still be human.  After the veil started to lift a little bit and I began to process all that had happened, I decided I needed a way to channel all of the energy associated with the experience.  I started looking up brain tumor organizations and came across the website for the National Brain Tumor Society.   There was a brain tumor walk benefitting NBTS the next month and I contacted the regional director to find out how I could get involved.  

It was love at first walk.  NBTS is a wonderful organization which is doing everything possible to advance research and advocacy for the brain tumor community.  I attended their annual gala in Boston in 11/2016 and was completely inspired by the passion and dedication of its members and those living with brain tumors.  I became a member of the planning committee for the Bay Area Brain Tumor Walk.  In 5/2017, I attended my first "Head to the Hill" event in Washington D.C. where more than 300 volunteer brain tumor advocates from all over the country converged to meet with our state government representatives to push for additional funding for research into GBM and all other brain tumors.  I became a member of the Pacific West Regional Advisory Board who assists NBTS with the development of strategies, initiatives, and programs that grow the organization's presence in California, Oregon and Washington.  I attended their annual Scientific Summit in Boston in 10/2017 where I learned so much (often way above my pay grade) about NBTS' Defeat GBM Research Collaborative.  Additionally, I volunteered at the Society of Neuro-Oncology's Scientific Summit in San Francisco which afforded me not only the opportunity to share about NBTS with the wider brain tumor community, but to see some of Patrick's doctors who became like family in the months we lived in the hospital. 

Most recently, I became a stakeholder with the Brain Cancer Quality of Life Collaborative, where we are focusing on optimizing palliative care for those with brain cancer.  I was also selected to attend the American Association for Cancer Research's Scientist Survivor Program in Chicago this May, a unique program designed to build bridges and unity among the leaders of the scientific and cancer survivor and patient advocacy communities worldwide.  I am looking forward to learning to become a more effective advocate and bringing much-needed attention to the brain tumor community.

What Patrick went through was horrible on every level.  I found it absolutely unacceptable that the insurance companies involved throughout his illness and death did nothing but make things worse for not only Patrick, but those who wanted nothing more than to ease his suffering.  When someone is fighting to live, the last thing anyone should be having to worry about is paperwork, deadlines, and denials of reasonably recommended care.   ​I am constantly plagued by the question of how to incentivize insurance companies to become part of the patient care team so that they are motivated to fund not only standard of care treatment but clinical trials that will eventually provide an end to the suffering of the thousands of people diagnosed every year.  No one dealing with a terrifying and deadly illness should be treated like Patrick was.  We can, and must, do better.

Like every other area in my life, I don't know where my advocacy road will lead me.  I do know, however, that I am built for this kind of work.  Nothing has given me a greater sense of purpose than sharing my experience with those who find themselves joining a community that none of us ever asked to be a part of.  If all of the years in school and the hundreds of thousands of dollars in student loans were for the sole purpose of making Patrick's journey a little lighter, it was worth it.   But I have a feeling it is bigger than that. 

My involvement with NBTS has brought both purpose and meaning to a sometimes desolate existence.  I have forged friendships with those living with brain tumors who fuel my fire for finding better treatments and ultimately a cure.  I have been touched by other care partners who are currently walking along side of the diagnosed, as well as those whose journeys sadly ended like ours.  Is it difficult to grow to love incredibly beautiful, brilliant, talented people whose futures are as uncertain as Patrick's was?  Yes.  Is it worth it?  Absolutely.  

For those of you who are grieving the loss of a loved one, or a marriage, or a job, or whatever other transformational change life has thrown your way that leaves you feeling lost, my advice is this: find your people.  Fight for them.  Show them, and in turn yourself, that none of us is in this alone.

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