Fighting for Quality Healthcare

            Navigating healthcare is not an easy process. I’ve learned this with both my mental illness and cancer.  I don’t understand why it has to be so difficult.  I have what is supposed to be good health insurance, but I frequently find myself on the phone with the insurance company or the medical group that makes the decisions as to what will be paid for and where I will be treated.  It’s frustrating.

            As a patient I trust my medical providers.  When my psychiatrist, oncologist, or primary care order something I expect it to be covered.  They are the ones who know what I need.  They are the ones with the medical degrees.  How can an insurance company who is looking out for their bottom line know better? In dealing with my two diagnoses, I am learning more about how the system works and I don’t like it.  Hence, this post is born of my frustration.  I share my experience here because I want to encourage others to stand up the way I am trying to do.  As patients we have a voice.  It is time we are heard.

            I’ll start with my mental health.  When my psychiatrist determined that medication was not working for my depression, she recommended transcranial magnetic stimulation (TMS) as a treatment.  (More on what TMS is and how it works in a later post.) In order to get TMS treatment, we had to prove that medications didn’t work.  We had to show that I had tried several medications without relief of my symptoms.  I had to get my primary care to refer me because the insurance company said my psychiatrist was not enough.  What kind of BS is that?  My psychiatrist is the expert.  Her statement should have been enough.  TMS works for me, but every time I need it, we have to convince the insurance company.  We must follow their guidelines on when and how many treatments I can have.  My psychiatric nurse practitioner oversees the treatment.  She knows what I need, but we must defer to the insurance company.  God forbid they spend too much for my relief from depression.  TMS works.  There shouldn’t be a need to continuously okay it with the insurance company.  

            My health insurance also insists on three-month medication supplies.  When my depression is bad and I am having suicidal thoughts, overdosing on pills is where my mind goes.  I know it.  My psych team knows it.  I asked my insurance company if my prescriptions could be one-month supplies to protect me. Instead of the required three-month supplies.  They fought me on it.  I had to prove that I had suicidal thoughts.  I had to threaten a grievance if they didn’t relent and allow me to have only one month of medication at a time.  All my doctors agreed that this was best for me, but the insurance company was considering their bottom line.  I finally told them that they would be responsible if I took an overdose.  That finally persuaded them to agree to one-month supplies at time, but they would only agree to that for a year.  Then I must request it again. 

            I was able to stand up for myself, but it was not easy.  I cried a lot.  My anxiety level was high.  I doubted myself.  I felt like giving up.  Luckily for me, I have a good team around me who encouraged and guided me.  Someone with a mental illness shouldn’t have to fight that hard.  It takes most of my energy to fight the illness alone without the added need to fight an insurance company.

            Cancer decided to enter my life.  I thought a physical illness would be easier to address than a mental illness, but I have found the insurance company and the medical group putting up roadblocks here, too.  First, they sent me to an oncologist who was not what I considered high quality.  Despite my primary putting in the request to send me to a higher-level facility, I was sent to this first doctor.  My cousin is an attorney.  She stepped in and helped me make the calls to my medical group that were necessary to get a second opinion and ultimately better care.  Not everyone has a cousin who can do that.  It is not fair that I had to take that step.  I was making these calls while feeling like crap and being scared.  If my cousin hadn’t been by my side, I wouldn’t have gotten anywhere.  Why did I have to fight so hard?  

            I realize the first oncologist was a doctor and could treat me, but his care was lacking.  He spent maybe 15 minutes with me.  He said I had metastatic breast cancer.  I had to ask what my prognosis was.  He merely said it was fair.  What the hell does that mean?  His assistant said I was at stage 4.  I thought I was going to die.  I looked at my aunt, who was with me, and wondered how long I had to live.  This was my first time seeing an oncologist.  I didn’t know I could expect more until my primary care and my cousin helped me push for a second opinion.  When I saw the doctor for the second opinion I was amazed at the difference in care.  She spent about an hour with me.  She explained every aspect of my diagnosis.  She told me I wasn’t dying.  She explained that while my cancer is not curable, it is treatable.  This doctor explained what that meant.  Her explanation provided me with hope.  Hope is something every cancer patient needs.  I immediately knew that this was the doctor I needed providing my care.  

            Unfortunately, my medical group disagreed.  They said this oncologist was out of network and that I didn’t need her level of care.  I was angry and exasperated.  Again, I relied on my cousin.  She helped me stand up and use my voice.  I pushed back.  I threatened to file a grievance.  They knew I had an attorney on my side, and they didn’t want to mess with that, so they conceded to let me be treated by the second oncologist.  Still, they insisted on their terms.  I could be treated by this oncologist and receive treatment under her guidance at her facility, but blood work and other tests had to be done in the medical group’s network.  It was the only way I could get the care I needed.  So, the agreement was signed.

            On the surface it seems okay, but it causes difficulty.  I still need to push the medical group.  I am always on guard, ready to fight for my care.  Why do they make it so difficult to receive quality care?  It shouldn’t be this hard.  When we are ill, we need help from our medical group and insurance company.  We don’t need them putting barriers in the way of quality care.  I have spent so much energy fighting to get the care that I need, how am supposed to have the energy remaining to fight the illness.  I am grateful that I have had my aunt and cousin by my side in this battle.  It is what has allowed me to successfully battle, but I shouldn’t need to rely on them.  Insurance companies and medical groups need to place patient care ahead of profit.  As patients, we need to recognize that we have a voice in our care.  Those of us who have the ability to use our voices need to stand up.  We will help ourselves and help others in the process.

            I will continue battling depression and breast cancer.  Right now, I can’t predict whether I will win the fight, but I can guarantee that I will fight with all I have inside of me.  I’ll continue to use my voice as much as I can.  I ask that those of you reading this consider using your voice to help me and others in the similar situations.  Keep reading my blog.  I’ll continue to share my story.  I’ll continue to use my voice. I’ll continue to fight.