A fresh concern and it’s a whopper

Sent by a straight female friend ūüôā

A lot of you are friends with me on Facebook so you’ve already seen the splendid offer I received. However, too good not to share with a broader audience.

And….so very many of you have leapt into action and sent letters/faxes/emails to WageWorks on my behalf. Thank you thank you thank you.

All of your comments and suggestions have been welcome/helpful as well. One recent comment made me realize I might be in a bigger pickle than I thought if my coverage is not reinstated. Open enrollment for Affordable Care Act policies is in December. However, the end of Cobra is a qualifying event, meaning I could enroll at any time. Termination from Cobra for nonpayment is a non qualifying event, which might preclude me from getting any sort of coverage (I do not qualify for medicaid or medicare) until the end of the year. If I am misunderstanding this, please apprise me.

My rapidly developing ulcer just increased in size. As well as my determination that there is only one way this can end—so very much is at stake. So please, keep those appeals coming. I shall be sending a fresh one off later today (thanks for the tutorial in how to send a fax for free from home, Miss Kimberly).

Terminal & Terminated

Terminal and Terminated.

I realized yesterday that I have had continuous health coverage from the moment I was born until just now–fifty eight years of buying into the American Dream of health and happiness. And it’s hard to believe that one missed payment was the undoing of this longterm relationship–me and my coverage. And given the fact that they cashed the check,¬†I think we can call this a late payment instead. *However, it is important to note (for the sake of accuracy) that I missed the grace period by a few days, not the due date. The due date was May 31st for June coverage. The grace period ended on June 30.

Yesterday I was most concerned about the bills I am now going to face for care, procedures and prescriptions that were procured under the assumption that I had coverage.

Today I am more worried about what lies ahead. If I am not able to reinstate coverage and/or scramble to be picked up by a new insurer by August 1st, I will have to cancel my CT scan on the 2nd. Ditto for the appointment with Dr. Shaw on the 7th, when I would have labs and also pick up my three month supply of trial drug.

This can’t happen.

I am going to get to work on figuring out where I will get future coverage from but in the meantime, I believe it is essential to have my Cobra coverage, in which I have already met my deductible, reinstated. And I am going to ask your help in doing so.

If each of you could send a letter to WageWorks in which you ask them to reinstate my coverage, I would be much obliged.

Say what you like in your letter but here are the facts. Although the termination notice is somewhat confusing, I missed my June payment. The way Cobra works is you have the month of coverage as your grace period but if you do not make that payment by the end of the month, your coverage is automatically terminated.

In my case, I thought I had paid. Because of my short term memory challenges, I keep a ledger of my bills as I pay them and I had checked off my Cobra payment for June. I pay my bills electronically and there are lots of steps to go through for WageWorks and I must have failed to push submit at the very end.

I got home from Montreal late on the 3rd of July and on the morning of the 4th, went online to pay my July premium, only to discover that I had missed June and was now locked out. I immediately called WageWorks and overnighted my appeal the next morning. On the following Monday I called to make sure they had received it and even though the P.O. showed my letter had been delivered, WageWorks could not locate it. I then faxed my appeal and called yesterday to ask about the status which is when I was told my appeal had been denied and that I had been terminated.

If you have access to a fax they can be reached at:

8335146416  ATTN COBRA APPEALS DEPT

If not, please mail to:

ATTN COBRA APPEALS DEPT, WageWorks INC PO BOX 2998 Alpharetta GA 30023-2998

Reference me as Evalynn Linnea Olson, ACCT #22234499. Let them know that this is a matter of life and death. That if I am forced to stop therapy my lung cancer will jump on this opportunity. And so should they—an opportunity to do the right thing.

xo

CANCER WITHOUT COVERAGE

Aside from something happening to my children, there is nothing I fear more than losing health coverage. And it just happened. Talk about a nightmare.

WageWorks chose to deny my appeal. And yet that didn’t stop them from cashing my checks for two months of coverage for a total of $1675.64.

Insult to injury, one I did not handle well. I am currently on hold, waiting to apologize to the supervisor at WageWorks who I spoke to. Sigh. Not only does lorlatinib have cognitive side effects, it also causes emotional lability and in stressful situations like this, I am not at my best. I was near tears, asked her how they could sleep at night (after learning my money would take two more weeks to refund) and then when she told me I could file a second appeal I said I didn’t know what I could possibly add that was more compelling than a cancer patient in a clinical trial with known cognitive side effects. And that¬†I was calling a reporter instead.

My son August was in the room and when I got off the phone he told me that I needed to calm down (no shit) and that saying those things wasn’t going to help me get what I wanted/needed: coverage. Aug used to be a hot head but these days he’s the one wearing the maturity hat around here.

Me, I’m just a mess. My landlord told me that it’s going to be a $100 charge for the replacement of my keys to the apartment, my head and my heart are all banged up and now this.

I sent an email to Alice, the head of the cancer center and the person in finance who has been helping me select my next insurance from the MA Health Care Connector–I was planning ahead for when my Cobra ran out at the end of August. I let all three know that my appointments/procedures at MGH in June and July as well as any prescriptions I had already filled would now not be covered and that until I had new coverage, I would need to cancel upcoming appointments. I asked them for any help/ideas they could offer as I deal with this situation. And I also reminded Mara, the head of the cancer center, that this muddle is exactly the sort of thing I was referencing when I said that clinical trial participants need more supportive services. In my own case, on a drug with cognitive side effects, I could use some help making sure I pay my bills on time. Cuz now I’m kinda screwed.

Hitting the fan.

Hard. In the last two weeks I’ve lost my keys, my boyfriend and my health insurance. I’m over the keys, although what a major pain in the ass. The end of my relationship, a little harder. I was having a really good time and just never saw this coming. We’d never quarreled or had a cross word but everything unraveled quite suddenly and in such a way that I felt rather like a bird who had flown into a window. Absolutely stunned. However, once I’d shaken my feathers, it was clear that I was better off flying solo. Today I availed myself of an unscheduled appointment with my social worker/therapist–just to check under the hood. It would seem I’m good to go but I think I’ll take a little breather before I try dating again.

Screen Shot 2018-07-11 at 11.45.22 PM

But the health insurance, oh my. When I first realized I’d missed a payment I overrnighted my appeal. The post office confirmed that my missive had been delivered last Saturday but when I called WageWorks yesterday they had no record of having received it. And they told me that it would take seven to ten business days to decide my appeal and that the clock would not start ticking until they processed it. I faxed another copy of my appeal to them yesterday but realistically, I will not know until the end of the month whether or not my coverage under Cobra has been reinstated.

It sucks, really sucks, although I own this—it was definitely my mistake. My excuse (and yes, I used it) was that the therapy I am on has cognitive side effects. Sad but true. Anyone who knows me well is quite aware of how challenged I am when it comes to memory. I mean, I have a feeling I’m forgetting something but I can’t remember what (haha). The other night I ordered a pizza, gave them my phone number and then immediately asked if they wanted my phone number. Ten second lag there and it was gone.

This is problematic in a number of ways and as I consider my future I wonder if I will have to go back to work and if I do, how will I manage. It’s not that I’m not intelligent or capable of certain things but when your memory is an issue, it really throws a wrench into things. And in my own case, it might be more than a side effect of my current therapy. Dr. Shaw and I have discussed the possibility that some of my cognitive challenges may be a result of the number of therapies I have had, including two different platinum agents in chemotherapy. And there is no way to know yet if the Gadolinium deposition on my brain is symptomatic–just not enough data and in my case, too many confounding details.

So I muddle along. The good news is that I am less apt to dwell. The bad news is that it is both frustrating and frightening at times to not be able to recall things. Simple things like pushing a submit button, when paying for your health insurance online ūüė¶

Filthy lucre

Screen Shot 2018-07-10 at 11.28.22 AMOk, let’s get real. I don’t expect to get paid $5000 a month to participate in a clinical trial and I deleted that rash comment from my last post. Fantasy, folks, that’s all. However, any sort of financial assistance in the form of compensation would be welcomed. When I met with the head of the cancer center, I also suggested that greater supportive services would go a long way. Free parking and a comped lunch, but also someone to help me navigate the financial morass while I’m on a drug with known cognitive side effects. Visits to a nutritionist, as just like everyone else on my therapy, my cholesterol is through the roof. How about some free massages—to make my life better/more relaxed? And I mean gratis—not billable to insurance.

In other words, there are ways to make the whole clinical trial experience more welcoming and sustainable. These are relatively new concepts as not so very long ago, most clinical trial participants were a one and done—in the most literal sense.

That was the expectation when I enrolled in my first trial ten years ago. That, best case scenario, my life would be extended for a few months. I am incredibly blessed that I have had the opportunity to go on to subsequent treatments and trials, extending my life far beyond what I ever thought possible. I am sensitive to the fact that my grousing about money is potentially ¬†unseemly for those who would give anything to be in my position–alive.

Gratitude is far more palatable and it makes my disease/continuing survival easier for all to digest. However, the problems I face are faced by others as well and as an advocate/activist, I feel it is vitally important to discuss them—in a public forum.

Being alive is a good problem to have. But having to worry all the time about the expense associated with your medical care is not. I now have way more anxiety about my money than my cancer. How crazy is that?

And the thing is, I am not poor. However, with health costs exceeding a third of my income, it’s not doable.

What if (and I don’t feel this is unreasonable) trial sponsors covered all medical costs for participants, just as so many people already assume is true? If that was taken off my plate than I could pay my other bills. My financial situation would still be tight but it would be tenable. And that is all I’m asking for; (I’m talking to the medical establishment now) don’t make this already tough situation–living with a terminal illness–more difficult than it needs to be. Show some appreciation for the very real contribution I and other clinical trial participants make. Without us and our mutations (that’s right, we actually represent a rare commodity, not just an opportunity) these drugs would never make it to market. That would be a real loss, both in terms of lives and dollars.

So let’s keep this conversation going. My experience might be fairly unusual in terms of years spent in trial, personal finances and marital status, but it’s not unique. Clinical trials are the lynch pin when it comes to cancer therapeutics. Things have been done a certain way in large part because few have questioned the status quo. We, as consumers, have greater value than we sometimes realize and it is time we demand a better experience. As a society, let’s stop asking clinical trial participants for more blood, more sweat, more tears and instead find a way to support them as they lead the way. It’s the right thing to do from both a humanitarian and a business perspective—in a word, profitable.

The financial toxicity that is part of staying alive

Cancer is big business. Yep, I said it. What is a devastation for us, as individuals, is an opportunity for others. I have sat in on meetings where that word opportunity was bandied about as if I, an opportunity myself, was not in the same room. Thirteen years in, I am a cancer cash cow. Milked and milked some more. Of course I am grateful to be alive. But I am also exhausted and increasingly depleted.

And I’m angry. Angry that I have now fronted (been in the first few cohorts) of three phase I clinical trials. That because of my (and other’s) contributions, many lives have been extended. And money has been made, lots and lots of money.

Several weeks ago I posted this on Facebook:

A rant and then a rave. I just received a notice from Partners health care threatening to send my account to a collection agency. If they do, this will be the third time. Included in this bill are my copays for the brain MRI’s that I don’t effing need but which are required for the clinical trial. The same brain MRI’s that are responsible for the fact that I now have Gadolinium deposits from the injectable contrast in my brain, a rare phenomena referred to as a brain stain. And if this wasn’t frustrating enough, I also received a notice from Cigna that my echocardiogram will not be covered at all, because it is not medically necessary. Again, mandated by the trial. But, in this case, clinically required as there is the potential for cardiology complications from the experimental therapy.¬†

And while sitting in a restaurant at the airport on the way home from the HOPE summit I watched numerous people come up to the soldiers at the table next to me to thank them for their service to our country.

I too am a soldier in an entirely different sort of war. I don’t get to board the airplane first—I can’t even get my parking paid for at the hospital. Instead I am a cog in the wheel–a cog that pays for the very service it provides. In more ways than one (brain stain). Wrap your head around that one.

#MoreRights&SupportiveServicesForClincialTrialParticipants

The exceedingly large number of comments on this post told me it had touched a nerve. The next day I forwarded it to the head of the Yawkey Cancer Center, requesting a meeting to discuss the financial toxicity associated with clinical trial participation. The director responded immediately, and invited representatives from the financial and clinical research departments to join us.

I brought along a sheet with my out of pocket expenses for the previous year, as well as my monthly budget. I addressed the misperception that clinical trial participants get all costs covered. Drug is free, some procedures and labs, everything else is billed to insurance. And clinical trials require more frequent visits and scanning, adding to overhead. Premiums and coverage are variable, but one can safely assume that a clinical trial participant will max out their deductible quickly. And that other out of pocket costs (parking, travel, meals, hotel) will almost assuredly not be covered at all.

I also shared my frustration at seeing notices seeking healthy volunteers for clinical trials at MGH. These volunteers are invariably offered compensation, whereas people with cancer are not compensated for their participation in trials. The long standing rationale is that to do so would be inducement. Which, of course, is total bullshit. The only thing inducing those of us with terminal cancer is our imminent demise. And any suggestion that the FDA mandates that cancer patients not be compensated for clinical trial participation is false.

The real truth is this. Healthy volunteers are offered compensation because no one would volunteer otherwise. And ‘volunteers’ in clinical trials for cancer are not offered compensation because (you choose) A. we are desperate and will do anything, B. it’s always been done this way C.¬†why pay for what you can get for free.

However, it doesn’t have to be this way. Nope. At the tail end of the second decade in the 21st century, it’s high time we adopt a new paradigm. One in which clinical trial participants are paid for their important contribution to medical research. Not only is it the right thing to do from a compassionate and ethical perspective, if the financial barriers to clinical trial participation are mitigated/removed, ‘volunteers’ (fucking hate that word) would no longer represent such an elite portion of the patient population, resulting in both greater equity and better science. And greater accrual, a continual challenge when enrolling patients into trials.

If I were to be compensated or heck, even paid a salary for my participation, than I might just be able to make ends meet. Imagine if I’d received a stipend for each of the 100 months I have now spent in clinical trials for drugs that command well upwards of $10,000 a month once they’ve gotten FDA approval. I might be able to pay my bills and also to live more comfortably. As it is (and yes, I will keep bringing this up until the day it actually happens), not even my parking is comped.

Taken from a current listing for clinical trials at MGH using healthy volunteers. Note the parking compensation.

And now the rub

I live on the edge. As I have a terminal illness, it is to be expected. Had I an intact family unit into which to retreat, that edge might blur. Living alone, it remains in sharp focus. Fortunately, my disease is currently stable. However, my finances are not.

Because of the cognitive side effects I experienced initially with lorlatinib, I found it difficult to organize my life in any material sense. I couldn’t seem to think in a linear way anymore, it was hard to reason, and my loss of memory was so profound that it felt as if it had been wiped.

It was a lot to handle on my own and worse still as I was also going through an incredibly acrimonious divorce. Before I began receiving alimony, my children started a go-fund so that I could pay my bills. The attorney fees soon became outrageous, and when I received a statement for $10,000, I lay down on the couch and wept. I had no idea what to do, and wondered if killing myself might not be the best solution (another potential side effect of lorlatinib is emotional lability and reduced inhibition).

However, I have the most amazing friends and two of them stepped in and simply paid my attorney fees. And when the dust settled they refused to let me pay them back.

Once I began receiving alimony plus child support, I was able to make ends meet. Child support ended after our son graduated from boarding school, and for the last two years I have been operating at a net loss every single month.

Now that I have a much better handle on the cognitive side effects, (aside from memory loss–which remains a great challenge) I am better able to organize. And to think about the future–in itself, a luxury; the very notion of future.

In the bigger picture, my alimony will run out at the end of next year, as I was granted only five years (from my perspective, don’t ever get divorced in NH). I do not qualify for disability because of the number of years that had elapsed between my last paycheck and my terminal diagnosis. I was awarded half of our retirement fund in the proceedings and once I am able to take social security, I will receive it at 1/2 the amount my ex-husband will get.

I am not without resources but there is at least a five year gap if I don’t want to burn through a somewhat modest retirement savings (of course, all of this is presuming I am going to live, something that is now conceivable). And that is why I am hard at work on writing a book—and also envisioning it as a best-seller (not going down without a fight).

In the meantime, my health insurance through Cobra runs out next month. I have been working with the financial department at my hospital to figure out what plan from the Affordable Care Act will work for me. It’s tricky, because clinical trials are procedure rich, ie; more copays. And, because I must seek coverage with a new provider before the end of the year (I should have anticipated this) I must now meet a new deductible.

It is all very worrisome stuff. Cue the cognitive side effects. With Cobra you must pay your premium within a specific grace period or you lose your coverage; period. A year and a half ago I missed a payment and had to appeal—I was given a second chance but also told it would be the only one. Four days ago I realized that I had again, despite my careful bookkeeping, missed another premium. All I can think is that I forgot to push submit.

When I called WageWorks, the man on the other end of the line was elderly and obviously very kind. I was unable to stop myself from weeping as I told him this was my worst nightmare–that I should lose my health insurance. And that if it happened, I would be financially devastated (my scans last month would not be retroactively covered). He was so very sympathetic but unable to help so I have once again submitted an appeal that goes something like this: please please please don’t take away my coverage because I missed the grace period by three days.

I will know what they decide shortly. The stress/anxiety is just about undoing me. And I share this with you so that you understand that I am a spin artist—you ask me how I’m doing and the pat answer is great. I am great, life is good, but there is a hell of a lot more on my plate than I sometimes acknowledge and not all of it easy to swallow.