If Insurance Companies Treated Cancer Like a Mental Illness

An Imaginary Conversation

If insurance companies treated customers with cancer the same way they treat customers with a mental illness, it would sounds like this:

Insurance Agent: Green Cross Super Insurance Agency, Melinda speaking. May I help you?

Caregiver to a Cancer Patient: Good morning. My husband has non-Hodgkin’s Lymphoma and the hospital informed me that he would be discharged today.

Agent: It appears your husband was admitted to the hospital 36 hours ago, is that correct?

Caregiver: Yes.

Agent: According to our records, his doctors believe he is much improved so we can no longer authorize in-patient care in a hospital setting.

Caregiver: Um, he’s over six feet tall and weighs 135 lbs. and his face is paralyzed. Not to mention that he needs a blood transfusion later today and probably another one tomorrow.

Agent: Those can all be handled on an outpatient basis, Mrs. Ojeda, there’s no need for him to continue at a hospital past the point where his doctors indicate that his situation has improved.

Caregiver: Do you have any suggestions for where he will receive this outpatient treatment? We live in a small town. The closest hospital with an oncologist is 200 miles away.

Agent: I’m sure that your local primary care physician will be able to handle those concerns.

Caregiver: We live in a SMALL town, Melinda. We don’t have a primary care physician that holds office hours on a regular basis.

Agent: I’m sure your husband will be just fine. Seriously, Mrs. Ojeda, I don’t understand your objection to having him discharged.

Caregiver: He doesn’t have any white blood cells, for one thing. What if he gets sick?

Agent: Well, of course if he gets sick you’d want to take him to the doctor’s office, wouldn’t you?

Caregiver: Two hundred miles away?

Agent: Of course not! The local doctor’s office.

Caregiver: He might be dead before I could get an appointment.

Agent: I’m sure you’re exaggerating, Mrs. Ojeda. Thousands of patients have been discharged from the hospital following the exact same protocols and there’s nothing to indicate that your husband would get worse after his doctor has clearly stated that he is doing better!

Caregiver: You don’t understand. I know my husband. I’ve been in the hospital with him and I know how easily his situation can go from ‘doing better’ to ‘life-threatening.’ You’re suggesting that I take him home today, and if he survives the car trip, that I care for him at home—you know, I’m not a medical professional, I’m a teacher for goodness sake! And—

Agent: —And once he’s safe and cozy at home, I’m sure he’ll continue to get better! (Melinda chirps.)

Caregiver: No. Once he gets home and gets a cold, he could die before I transport him back to the hospital. Why can’t he just stay in the hospital and continue to get better?

Agent: I’m sure it’s not as serious as that, Mrs. Ojeda. We know that recovering from cancer takes time, so our underwriters have come up with a formula that will work just fine in your situation. It looks like his next chemotherapy treatment is scheduled and preauthorized for a month from now—that’s standard procedure—

Caregiver:—YOU don’t understand! He doesn’t have ‘standard cancer’! He has a rare form of non-Hodgkin’s Lymphoma that has metastasized to his spinal fluids. Why can’t he stay in the hospital? Or better yet, why can’t he be admitted to a treatment center that specializes in treating someone with his exact form of cancer?

Agent: According to our protocols, there is no indication that such a drastic step is necessary. Of course, you can always send him to the hospital of your choice, you know.

Caregiver: And insurance will help cover it?

Agent: Oh, no, we only cover standard procedures at in-network facilities. Those treatment centers don’t have the same regulations as real hospitals. Why, I’ve heard they are nothing more than glorified resorts!

Caregiver: His doctor did tell us that a treatment center would provide the best outcome for someone with my husband’s diagnosis.

Agent: Doctors. Don’t you hate how they think they know everything?! If you want to go that route, you’ll have to pay for it yourselves. This is an insurance company and we don’t authorize more treatment than is necessary according to our charts and regulations, nor do we pay for high-priced resorts for people who don’t want to go to work.

Caregiver: Wouldn’t it be less expensive to allow my husband to go to a treatment center where they address his disease holistically? It seems as if it would cost the insurance company less and produce less paperwork if there were just one admission and one treatment plan.

Agent: As I said before, there is no clinical proof that a treatment center would work any better than our partial hospitalization program, so we only authorize what we know has worked in the past.

Caregiver: There’s nothing I can do? No one I could write a letter to and explain about the treatment center? Could I even appeal the decision to have him released today? (Said through a torrent of tears).

Agent: Well, you could always TRY writing a letter and it’s POSSIBLE that they would authorize one more day of treatment. But the company has never paid a penny for one of those fancy treatment centers. No proof that they work, remember?

Caregiver: Thank you for your time.

The Difference in Care

Remember, this scenario is purely fictional. My experience as a caregiver and advocate for my husband during his catastrophic case of cancer was generally positive and I will be forever grateful that we had good insurance that authorized every life-saving measure the doctors ordered (I know not everyone has had the same experience—even for cancer cases).

But if one were to replace the word ‘cancer’ in the conversation with ‘depression’ or ‘eating disorder’—that’s a different story. Whilst acting as a caregiver and advocate to an adolescent who struggled with an eating disorder, suicidal ideation and severe depression, I discovered the disparity between how insurance companies treat the two illnesses.

If a person is suicidal at the moment, they will be admitted to a hospital for observation. But if they’re killing themselves through binge eating or anorexia, they have to reduce themselves to a skeleton or cause bodily harm through overeating in order to receive hospitalization benefits—and the benefits only last for a short amount of time (until the patient appears to be making progress).

Once the patient reaches the criteria for ‘making progress’, the patient is discharged and expected to find local, weekly help through a counselor. Which is fine if one lives in a large metropolitan area with plenty of choices.

What if Local Help isn’t Available?

We live in a very small town in a state with a very small selection of insurance-approved facilities—and none of them would authorize full hospitalization unless the patient expressed suicidal ideation (a fancy word that means someone has thought about killing oneself and has considered different scenarios). But once a patient feels slightly better and the crisis has passed, the insurance company sends them back home to receive help once a week or twice a month.

As parents we did everything in our power to find the best place for our daughter (within our means). This included having her live with relatives 600 miles away so that she would be able to drive herself four hours each day (two hours each way) to a six-hour a day partial hospitalization program that insurance DID cover. She lasted a week and then called home and told us she’d been thinking about going for a walk at night and stepping in front of a car.

We drove to Phoenix that night and I caught a flight to go and bring her home. At least at home she would be where we could watch her twenty-four hours a day (that’s not a burden we wanted to place on relatives).

Health Insurance Doesn’t Want to Pay for Continuity of Care for Mental Illness

Without continuity of care (she received care in four different states, and two different countries from five different psychiatrists and five different counselors over a period of two years as she tried to ‘do life’ whilst struggling) two things happened. Neither one of which would have happened if she had been diagnosed with a well-understood condition such as cancer.

First of all, she didn’t find relief for what ailed her. Anyone who has searched for a cause to a physical ailment for more than one doctor’s visit knows how frustrating and debilitating this can be.

Second, she was not properly diagnosed for two long years and she’ll be living with the consequences of that missed diagnosis for the rest of her life (but that’s another story, and not mine to tell).

I can’t help but wonder how much agony could have been avoided if she had been allowed to enter a treatment center where trained professionals look at the problem from a holistic point of view that looked at the complete picture of what had been happening.

Funky Math

I can’t help but question the logic of an insurance program that will fork out $27,000 for a partial-hospitalization program for ONE WEEK but refuse pay $45,000 for a full treatment program that lasts for TWELVE WEEKS.

I’m not that great at math, but even I can see how ludicrous this is. I do understand that not all treatment centers are created equal and that there is no regulation standard or certification process for the many centers that have sprung up in the last twenty years.

I discovered that insurance companies ‘trust’ programs operated by a hospital, and will authorize benefits—but the patient has to be suicidal or almost dead before they can be admitted on a full-time basis. Tragically, they often only receive comprehensive care until the doctors ‘see improvement.’ If one happens to live a long ways from a hospital, well, they get to see a counselor once a week.

From a financial point of view, treating a patient holistically and intensively for three months (and including the family members in the treatment plan as the professionals see fit) would cost less in the long run. Sarah’s multiple admissions to crisis centers, partial-hospitalization programs and individual counseling sessions stretched out over two years—not to mention the emotional toll extracted from the patient and family members during this process.

Educate Yourself

As brave people with mental health issues stand up this month to speak out about their stories and their experiences, I ask you to listen. If you would have asked me two years ago what I knew about mental health, I would have known very little.

Chemotherapy or radiation don’t provide a cure for mental illness. It’s a lifelong sentence that requires all of us to learn what we can in order to help those who suffer. If we all ask questions and question authority, maybe we can change the way insurance companies pay out benefits for those with mental illnesses.

My voice is small.  But a million small voices calling out for change can create a mighty roar. #MentalHealthMonth Click To Tweet

 

 

Anita currently teaches English to 7th-12th graders. She describes herself as a 'recovering cancer caregiver' who gives thanks daily that her husband has been cancer-free for ten years.

Please note: We reserve the right to delete comments that are offensive or off-topic.

  • Oh, Anita … I could weep for what you’ve been through. You’ve raised a number of vital issues today and all I can do is say thank you for putting this all on the table. Your wise words and profound questions should kick a number of conversations into gear that should have been dealt with eons ago.

    I’m sharing your post on my sidebar today. It’s that important.

    And you’re that incredible …
    Linda@Creekside recently posted…In Which This Is All So Very BittersweetMy Profile

  • Donne

    Thank goodness they don’t treat cancer like they do mental illness!

    I will say this for at least one big company – Kaiser Permanente has been excellent for our journey. They have provided continuity of care, proper diagnoses, and are very good about fitting him in when the situation warrants it. The psychiatrists listen to (and even solicit) my input, since I’m the one who knows him better than they, and are willing to consider my suggestions. That being said, this has all been at one facility, with one provider and one therapist. I am not so confident that it would have been as positive in multiples such as you described.

    • I’m so glad that your provider has it all together! Part of our problem arose from the fact that we moved to a smaller town than the small town we had been living in and that she was so far away through a lot of this (at college in another state and another country). Plus, once a child turns 18, HIPPA laws make it really difficult to arrange for care or communicate with medical professionals.
      Anita Ojeda recently posted…If Insurance Companies Treated Cancer Like a Mental IllnessMy Profile

      • Donne

        I know that full well. We just went through that last summer. But he was able to sign the paperwork that allowed the providers to disclose information to me (again, though, single site, same state, etc..)

  • Sierra

    I understand the frustration. Having been diagnosed in second grade with chronic genetic depression and the inevitable anxiety. Counseling didn’t last long and eventually I shut everything out. I went through a dark period where I thought & tried to kill myself several times. When I finally saw a pin prick of light, I was alone in my high school dorm room, wondering why I didn’t just end it. I gave up and called my mom, who immediately set up tests and more counsellors. I went to many doctors and pschiatrists who all told me the same thing: we can’t help you (which is not what you tell a severely depressed person who has reached rock bottom) I’m on a medication that helps now, but it was a struggle and I never went back to another psychiatrist. Now contrast the chronic illness I’ve had a year and half: I went to the hospital, checked into the ER and commence the testing. Insurance has paid for multiple tests, surgeries, and enough prescriptions to fill a pharmacy, all without question, even though they had no clue what was wrong. Now that I have a diagnosis, they are still more receptive towards paying for thousands of tests rather than mental health. Having several “invisible illnesses” it bothers me that mental health care is one of the most serious problems affecting people now days, but we can’t get all the help we need.

    • Oh, Sierra. All I can say is, “I’m sorry.” I’m sorry that I wasn’t more understanding and that I was so clueless back when I knew you as a little girl. I’m sorry for any unsympathetic words I may have spoken or unkind thoughts I thought. Please forgive me. I am so much wiser now. I hope that you continue to find healing for both your physical and mental health. I so appreciate the way you have reached out to my baby and made her smile countless times in the past few months.
      Anita Ojeda recently posted…If Insurance Companies Treated Cancer Like a Mental IllnessMy Profile

  • Thank you so much for laying this all out on the table so openly and honestly (I know that’s not easy). As someone who has battled with anxiety/depression for the past four years, I know first-hand how difficult (and expensive) it can be to go from one physician to another. And like you said, it’s not always so cut and dry to find a treatment that works and it can be a very frustrating, uphill battle. I think it’s great that the stigma is melting a little bit surrounding mental health but there’s always more that can be done. In the meantime, I feel blessed to be a part of a community that allows its members to understand and teach and talk openly–that is the only way we can ever dispel any myths surrounding mental health disorders.

    XOXO
    Charlotte recently posted…Come Clean Pop Culture Soap review and giveawayMy Profile

    • I’m so sorry that you struggle, Charlotte. I, too am glad that the stigma is melting–slowly–in our society. I certainly hope that the insurance companies will figure things out soon, though, for the sake of all the hurting people out there!
      Anita Ojeda recently posted…If Insurance Companies Treated Cancer Like a Mental IllnessMy Profile

  • Tara

    Oh friend yes and thank you. Your words are sadly so true even if it is a fictional situation. “But a million small voices calling out for change can create a mighty roar.” YES!!!

  • This is so powerful… such an eye opener that is MUCH needed! Shared on Twitter… spreading the word!
    ~Karrilee~ recently posted…I Often Wonder…My Profile

  • So many people never know this is an issue. I loved the way you laid it out, the call might be hypothetical to this situation but people face this same issue every day for problems that aren’t hypothetical.
    Betsy @ Happily Ever After, Etc. recently posted…Present Ideas for your Man… How to go Completely Overboard!My Profile

    • Wouldn’t it be nice if doctors and insurance companies actually listened to family members?! That was frustrated me the most in trying to get care for our daughter. We KNEW something wasn’t right and that once-a-week counseling wasn’t going to fix the problem–but no one would listen.
      Anita Ojeda recently posted…If Insurance Companies Treated Cancer Like a Mental IllnessMy Profile

  • Great comparison. I had no idea your family had been through all that. I knew the cancer side of your story, but that is all. It’s so great that there are people like you out there being honest and open so that others know they are not alone. I shared on Pinterest.
    Messy Mom recently posted…Mother Son TimeMy Profile

    • Thank you so much for sharing :). The more we get the word out, the more conversations we can start!

  • Amen and amen, Anita! I wish mental illness were taken as seriously as physical illness, and hopefully one day it will be. It is definitely just as catastrophic and life-threatening. My daughter has had suicidal tendencies at two periods in her life and it was the most scary time of MY whole life. 🙁 Thankfully through trial and error she was able to find the right medication that has made all the different in the world for her. Praying that God will redeem the years that the locust has eaten from your daughter’s precious life.
    Lisa notes recently posted…Do you read the Bible over and over?My Profile

    • I’m so glad they’ve figured out what works best to help your daughter! We are currently on the road to healing (by we I mean my daughter and our family–because mental illness takes a toll on family members, too). Thank you for your prayers.
      Anita Ojeda recently posted…If Insurance Companies Treated Cancer Like a Mental IllnessMy Profile

  • This is such an important topic and you hit the nail on the head. We can all see the lack of respect and understanding, and something needs to be done. Bless you for all you have been through!
    Sarah Donegan recently posted…Summer ChallengeMy Profile

  • Anita,
    Oh, it makes me sad and mad at what you’ve had to go through to get treatment for your daughter…I’ve tweeted and added it to my Delicio links on my side-bar…

    Praying God will give you and your daughter hope for help and for God to provide someone who can help you and your family…((Hugs))
    Dolly@Soulstops recently posted…Grace to be where you are-2My Profile

  • Anita—I am a FMF woman, and I sat with you this morning 5:12 a.m. now on EST so you’re likely sleeping. I have had family touched by cancer. My MIL died in 2006 after a year long battle with stage 4 bone cancer…her husband’s insurance company was outstanding…that was a God gift. My aunt now has cancer for the second time. I sent you link to them FB. My uncle and she would like your writing!

    My own story of anxiety/depression is one of many years of accepting, counseling, medication, two hospital stays (no clue what they cost), and thankful that my husband has good insurance and fabulous faith to stand with me through the highs and lows. I’m thankful your daughters and husband have YOU. God made your family, and for some odd reason illness of many kinds is in our world. Thankful that we have recovery, resources, and writing to help cope! We are blessed to live in the America for sure…not sure I’d be alive in other less well developed medically speaking countries. <3 to you…Jenn
    jennifer recently posted…5 Steps to Conquer GaggingMy Profile

    • It’s great to meet you, Jenn! I’m so sorry to hear about your family’s struggle with cancer and your own struggle with anxiety and depression. I’m also glad that God promises to draw near to the weak and brokenhearted and burdened and that is my prayer for you and your family. I agree with how fortunate we are for the health services available to us in the United States–even if they anger us some times, they are far superior to what many countries have.
      Anita Ojeda recently posted…You’re Blessed in Unexpected Ways When You FollowMy Profile

  • Hi Anita! I can totally relate to your story, your feelings. Such a burden is placed on parents, and patients, who look and look for help. Why do we have to run around like crazy to get help for a loved one? I can’t imagine the anxiety you went through to get help for your daughter. What a warrior you are!

    It’s so hard to see our precious children go through such hard, hard times. I commend you for your constant care, and managing in your circumstances. I’m so glad your daughter got diagnosed too, even though she had to wait so long… I pray she is doing better now? And I know you are being blessed for your work on her behalf. All illness is illness! We shouldn’t have a tier system for mental health. It’s just too hard…
    Blessings and hugs,
    Ceil
    Ceil recently posted…What’s Your Sign?My Profile

  • Thank you for writing this. I am coming to you from “Espressos of Faith” via #DanceWithJesus. I write about our own journey, which is just starting (my child) and someday will write more about my own struggles with depression. I also am on a mental health advocacy group in my town. I lived on an island (U.S. army installation) where we had no psychiatrist, and a counselor came onto the island for 6 weeks at a time and then was gone for long periods of time. That was one of the most desperate times in my life. You’re right. Things need to change. I watch so many friends with family members with mental illness go through this. Thank you for writing this. I pinned and tweeted it!
    Bonnie Lyn Smith recently posted…He Meets Us at the RailsMy Profile

    • I’m so sorry that you and your child have to deal with mental health issues. It’s so difficult when a child suffers :(. Thank you for pinning and tweeting. If we band together, our million small voices CAN make a difference.
      Anita Ojeda recently posted…Seeing God’s Face in the StarsMy Profile

  • Anita, your voice is so powerful as well as full of compassion and wisdom. I’ve learned over the years both in my own health care as well as in helping with family members (a few with mental illness) that using our voice and advocating are so vital – so necessary. It doesn’t make sense the way that mental illness, especially when paired with physical illness, can be treated as so inconsequential. It’s devastating to think of the lives that are permanently effected due to bureaucracy and politics. I stand with you, friend and thank you for bringing awareness.
    Tiffany recently posted…Will Our Children Know How to be Still? {Speaking Truth: Part 2}My Profile

  • Anita, even your “fictional” account has a ring of truth to it. My heart breaks for so many people who have to battle their insurance companies while battling illness. I’m so sorry for all you’ve been through with your daughter. May God bring full healing and restoration.
    Betsy de Cruz recently posted…The Teen Years: Holding onto the WonderMy Profile

  • Very eye opening! Insurance companies can be such life savers and such stressors. They definitely seem to have a list of socially acceptable illnesses. Prayers for all who must fight this battle.
    Jenni DeWitt recently posted…I Still Can’t Believe ItMy Profile

  • Such a good post. People always scratch their heads after a suicide and wonder why someone didn’t do something.
    Melissa recently posted…The Housewarming PartyMy Profile

  • Amen, and Amen! I’m shouting this from the rooftops! As a mom, special needs mom, foster and adoptive mom, as a person who has dealt with depression and had family members with mental health issues — yes to everything you are saying!
    Sara @ The Holy Mess recently posted…Depression Does Not Define YouMy Profile

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