It gets better

Which means worse. But I sure am acquiring some useful (not to me, but to my advocacy work) first hand experience.

Let’s start with the good news. I just spent three days in Boston wearing my ‘expert’ on clinical trials hat. First at DPharm 2018, an annual conference which bills itself as ‘Disruptive Innovations to Advance Clinical Trials’. Any conference with disruptive and innovation in the title has curb appeal for me. From an industry perspective, (pharma and biotech companies) it was both. From a patient perspective, we still have a long way to go. However, I am grateful that I and a small handful of other advocates (talking to you, Alicia Staley 😉 ) had the opportunity to attend and to sit on a panel. In addition, the networking aspect of this conference is amazing–lots of bright, fresh, enthusiastic individuals who are willing to both converse and listen. Hopefully I will have the opportunity to attend again next year.

Next up was an action packed day as a team member of the Patient Data Access Initiative, a nascent cross industry effort and a gig where I got paid for my expertise. I call this out because given my current economic climate, it is better than lovely to have monetary compensation in recognition of both my time and education/experience (ie: boots on the ground clinical trial participation). In addition, I went in skeptical–with data collection my first question is always ‘what’s in it for the patient?’–but emerged hopeful that this particular initiative might make certain things better/easier for us as well. Such as, tracking the number of scans we’ve had.

In the meantime, I was queued up for my new health insurance when it occurred to me that I hadn’t checked if MGH actually accepted it. Back in the day I understood this was something you needed to do but A. this was the first time in my life I was purchasing my own insurance (in my youth, I kept the same plan my parents got for me and then once I married, it was whatever plan was offered by the company my husband worked for) and B. I just forgot. This is my ongoing problem–this inattention to detail.

So I called the hospital late Thursday afternoon and guess what. As I was going through the Health Connector and getting tax credits, I could enroll in one type of insurance and one only. Two choices of plans—one with a $2500 deductible and $500 copay each time I had a CT scan and the other with a $1000 deductible and 33% of the CT billed directly to me.

This is why I held onto cobra as long as I did. The plans available to me through the Health Connector have lower premiums but high copays and when you are in a clinical trial, that sucks.

Anyway, all moot now. Because I screwed up I am now entering month two with no health insurance. Come November, I will be covered again. I am oddly calm about this. I don’t know if it is acceptance or surrender.

Once again, I cancelled appointments. Fortunately my scans and review were not until the end of October so it’s not that big of deal to move them to November. I should have enough drug to get by and only one prescription was due to refill. Ironically, it is my antidepressant. I am going to have to bite the bullet and pay full price.

I told my son that if I fall ill or am injured not to take me to the doctor. I was only sort of kidding. This is health care in America. Oh, and don’t forget. I will incur a penalty on my 2018 income taxes for the two months I have not had health care coverage. Hit me. Hit me again. Just make sure it’s not hard enough that I require medical assistance 😉

7 responses to “It gets better

  1. If you are on lexapro I can give you some.

    Sent from my iPhone


    • Thanks doll. It’s prozac. I’m going to go pick it up now—maybe I will be happily surprised at the $. Here’s hoping.

      xo Linnea

  2. Although I have been in this game much less time than you I recently had my own pharma nightmare. I was on a trial at Dana Farber that ended with no notice. My dr assured me both drugs would be covered by my health insurance as they are FDA approved. Of course one was denied my dr worked hard on the appeals and peer review. It was weeks of hell. Long story short miracle insurance company overturned and will cover treatment. That any of us fighting for our lives should have to deal with these issues from greedy insurance and pharma companies is disgusting. You really have to be tough to fight this disease. Hats off to you!

  3. Linnea, I used GoodRx (a phone app) when I lost my health insurance. Gets you lower rates and lets you know who has the script at the lowest cost.
    I attended a workshop on “navigating health insurance in Kentucky” last week, for community health workers. The come away is mostly that “everyone is confused.”
    This is all so effing ridiculous and infuriating! Thank you for continuing your advocacy work and letting the public know about the realities of participating in clinical trials. ❤

  4. You know, Linnea, I have no words! That you should be in this situation when you are fighting for your life is plain wrong. It’s also wrong that in this day and age, you should actually have to think about going to a doctor if you have a health issue. I have no words of wisdom about navigating health care and insurance companies as I live in Canada but it’s not perfet either. Hoping you get the insurance you need soone than later.

  5. Under three months you’re okay – “Ultimately, If you had a gap in coverage lasting less than three months, you can claim an exemption when you file your 2018 tax returns. However, if your gap was three months or longer, none of the uninsured months are exempt from the penalty.”

  6. All.. has a ‘gofundme’ been set up ! Am happy to contribute how much are the antidepressants?

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