I Didn’t Elect to Have Cancer (Sometimes, Just Sometimes, Politics Work)

IMG_4899

Toar Winter got a crash course on how the politics of his state affected him on a very personal level. 

—-

I went to the doctor last summer for a physical. It was my first physical since turning forty, and the first time I’d been to the doctor in almost ten years. This was due to a combination of laziness and inopportunity—getting married and having kids happened in the interim, and I embraced any excuse for skipping what should have been an annual exam.

This year was different. For reasons unknown, my wife Melissa insisted I get myself checked out. Ironically I missed the first scheduled appointment. Heavy rain and heavier traffic impeded my commute, but at least I actually made it in to the office, and rescheduled on the spot. A month later I was back in the office, being told I needed to lose some weight (duh) while Fletch and ‘Moon River’ echoed in my brain.

A week later I got a call from my doctor, telling me I was a little anemic. This was strange, she said, and wanted me to get some additional tests. When I say a little anemic, I mean A LITTLE anemic– about a percentage point out of the normal range. She explained that this could be caused by many things, and she scheduled me for a wave of tests to determine the cause.

The colonoscopy and endoscopy came back clean, although there was a chance I had Celiac disease. I prepared myself for a Gluten-free lifestyle (no pasta?!? No Italian bread?!?), but additional tests for that came back negative too. More drawn blood, more tests. About six weeks after my initial exam, October of last year, my wife and I were sitting in a hematologist’s office when the fifth doctor to examine me finally had a conclusive diagnosis.

“Well, you don’t have HIV (duh). But you do have Multiple Myeloma.”

Shocked silence.

“It’s very rare in people your age. The average life expectancy after diagnosis is 7-10 years. I know this is difficult, so I’m going to give you some time to talk about it.”

And he walked out of the room. I looked at Melissa. “So… I have cancer?”

All of a sudden a life without pasta or Italian bread didn’t seem so bad.

The next few days were very raw emotionally. I was scheduled to see a specialist the following week, so we had a full four days to Google ourselves silly. My parents got in the car immediately upon hearing the news. We had a weekend full of tears and hugs. I’m getting teary right now thinking about my father’s reaction (he couldn’t really speak, a tough old-school man choking back tears); and my oldest son, hearing the whispers on the phone, seeing and understanding way more than a seven year-old should, coming up to me, putting his face two inches from mine as kids are wont to do, asking, “Daddy, do you have cancer?”

 ♦◊♦

Smash cut to three weeks later. We moved my treatment to Dana Farber in Boston (first impression of DF: it’s the Disney World of cancer), where the doctor informed us that Multiple Myeloma isn’t necessarily a death sentence. Treatments have improved to the point to render life expectancy estimations obsolete. New drugs were being developed and approved every year. I was young and strong, and the disease was caught early, so there was every reason to believe I would out-live that 7-10 year window, and that something else would probably end up killing me, many, many, many years in the future.

It was the first time in almost a month where we were all kinda happy. There would be a regimen of drugs and infusions, and then probably a bone marrow transplant that would present a difficult few months, but with a predictable outcome of remission, hopefully sustained for a long period of time. My mother joined us for the doctor’s visit, and we left optimistic, laughing and joking, this time through happy tears.

By that time my mother was an expert on Myeloma. We joke all the time that if she wasn’t a teacher she would’ve been a doctor, and she still loves to give amateur diagnoses of ailments. She sat with us in the doctor’s office, nodding emphatically with every word, as if the doctor was confirming HER prescribed course of action. We got home that night and talked ourselves through the treatments ahead, going over the drug regimen I’d have to take to combat the over-active proteins in my bones.

My mother said, “You know, Revlimid (one of my drugs) can be pretty expensive.”

Melissa’s face dropped. Among her myriad of duties running the household, she’s in charge of our health insurance. As freelancers, we aren’t part of a company plan; we’re on our own in deciding what level of insurance is right for our family, and we bear the cost of that insurance in its entirety. She immediately called our insurance agent, and discovered that Revlimid was a Schedule D drug, and we were responsible for half of the cost of the drug.

She was told that one course of the drug (three week’s worth), would cost $8,600. So we were on the hook for $4,300 every three weeks.

$4,300. Every three weeks.

This part of the treatment would go on for eight to twelve cycles, so all told we were looking at a minimum of $35,000 out-of-pocket to cover the drugs that would hopefully prolong my life, and it could be as much as $50 grand.

♦◊♦

This is where a political blog finally becomes political. During all this medical craziness, the country was speeding towards Election Day. I am an unabashed fan of President Obama. His first inauguration was one of my proudest days as an American. I don’t think he’s perfect by any means, but he is a hero of my adult life, and I firmly believe history will look back on his presidency favorably as the beginning of the next American Renaissance. My Facebook posts tapered off as cancer and treatment took a front seat to political theater, but I stayed engaged with the debates through November, and happily pulled the lever for Obama on Election Day.

Despite my support for the President, I owe the happy ending of this story to Governor Romney. As a resident of Massachusetts, many of the benefits of Obamacare are well-established with Romneycare, well before the rest of the country. The one that affects me specifically is discriminating coverage of pre-existing conditions.

The day after our Revlimid sticker shock, Melissa called our insurance agent back and asked her our options for switching coverage. We were elated to discover that we could switch plans easily, to one that had a more comprehensive prescription drug plan. We’d have to max out our deductible again, and our premiums would increase, but we’d be responsible for a $50 co-pay instead of $4,300 for each cycle of Revlimid. We’d net a savings of at least $30,000 initially.

If I didn’t have Romneycare, I would have had no options as this facet of Obamacare isn’t implemented until January 1, 2014. We would be in hoc for $35 grand. And my treatment has moved on to the ‘maintenance’ phase, which is a lower dose of Revlimid (I’ll be taking this for the rest of my life)—another $4,000 a month. I’d be responsible for another $32K until we could legally switch plans next year. Nearly $70,000 in sixteen months for one drug.

Now, the truth is Dana Farber and the drug manufacturers work with patients to help alleviate costs. We got a grant to cover the first cycle of treatment before our insurance could be switched, but the point is we were lucky. If we had moved to Rhode Island a few years ago like we talked about, we wouldn’t be so lucky. Romneycare was the signature achievement of the former Governor’s tenure, politically poisonous for him but incredibly fortunate for us.

I feel like the partisan divide has clouded our ability to see what’s good for us, with each side forced to chastise the other because we MUST be right and they MUST be wrong. Governance has become absolutist. One side says “NO WELFARE!” and the other screams “OF COURSE WELFARE!” when the reality should be “welfare is a necessary program to help out our vulnerable citizens, but how can we minimize the amount of people that need it?” The same with healthcare. One side clamors for absolute repeal, forcing the other to hold fast and defend absolutely, when perhaps they both could be saying, “How can we make this better for everyone?

My reality is a Republican governor of a liberal state acknowledged that the healthcare system could be improved, and set about making a change with a Democratic legislature. And me, Joe Average Citizen, now sees the fruit of that compromise, in all its glory.

If only Washington worked this way. If only Washington worked, period.

photo: stevendepolo and _theo_ / flickr

Sponsored Content

Premium Membership, The Good Men Project

About Toar Winter

Toar Winter is husband to Melissa, father to Kaden and Zander, and creative editor for TV and the web to the Boston market. He loves golf, poker, and the Yankees, and will give an opinion on just about anything. Ask him yourself on Twitter @gordonggourd.

Comments

  1. Chuck Ferreira says:

    Fantastic piece and so spot-on…and, happy to read that the prognosis is extremely positive.

  2. Great piece Toar., if anyone has the proper attitude to battle cancer it’s you.

  3. Even though I knew all of this, you have a way of finding the positive, crystalizing ideas and making me feel that there may be hope for people working together.

  4. David A. Frankel says:

    Well said, my friend. Would have expected nothing less. Gov’t has to get back to working to create solutions, not worrying about left or right or who is right or wrong. Keep up the good fight!

  5. Harrison says:

    I know your mom, and I love the part about the doctor confirming her protocol. : )
    So schedule D is the experimental class? That works best and not yet covered? And is lobbying
    the FDA the way to move it down to another class?

    • Toar Winter says:

      Harrison, I misspoke a bit in the piece. Revlimid is a ‘Tier 4′ drug on our old plan, and from what I can tell, it’s an arbitrary list that doesn’t correlate to the federal ‘schedule’ of prescription drugs. Thanks for reading.

Speak Your Mind

*