Having The “Money” Talk

I just finished our bi-weekly Lung Cancer Social Media tweet chat and I came away with a few thoughts I needed to share.  Our chat was about the rising costs of cancer care and how we can fight it or fix it or change it. Here’s what we know: the costs of research and development (R&D) for new drugs are forever changing and hard to control because no one ever shares what goes into those costs. But one thing we can control is the conversation we have with our health care providers (HCPs). My advice to everyone, regardless of your diagnosis, is to ask your HCP a tough question…HOW MUCH IS IT GOING TO COST? Listen, if you don’t discuss it with your doctor (who can assist in your treatment plan) you can’t very well wait to discuss it with your pharmacist when you go to pick up your meds. It’s too late then because 1) they can’t help you [even though they want to] and 2) it has nothing to do with your pharmacist or CVS or Walgreens or wherever you get your meds.

And we could go into the conversations you could have with your insurer, but when you get on the phone with them, the decision has already been made. You’ve already bought the meds and your doctor prescribed them so you probably need to take that first dose and stop arguing with Blue Cross or Humana about how much they are covering. That ship has sailed (the price of the drug.) Yes, do follow up about why the percentage of what they are covering has changed or if your policy coverage is different and then take it up the management chain. Because that person you’re talking to can’t change it so we need to go elsewhere. (I’ll talk about insurance companies and their issues at another time.)

Talk to your doctor whenever he or she recommends a certain course of treatment or drug. No, they may not know the exact price, but most times they’ve heard from other patients or docs who have discussed the price of certain meds. In many cases it’s well-known how expensive drugs are, but maybe the exact price isn’t known.  Keep in mind that a lot of costs involved with cancer treatment just aren’t known because everyone charges different prices. It’s hard, no doubt.  But you know those letters you get from your insurers that discuss price changes and increases? Read them. That way you aren’t surprised when the same drug you used to pay $20 or $200 for now costs $55 or $350.

The key though, even when doctors don’t know the cost, is to communicate.  When we want to know how much it’s going to cost to fix our cars we ASK our mechanics right? When we need to know how much to budget for HVAC repairs we ASK right? Then why can’t we ask how much it will cost to make us feel better? When you find out how much a certain drug will cost, speak up and don’t be afraid to admit if you can’t afford a certain treatment.  It’s ok to admit that you’re scared because you don’t know where the money will come from to pay the bills. Don’t suffer in silence. Your illness is already making you suffer enough.

What else can you do? Considering signing this petition Protest High Cancer Drug Prices So All Patients with Cancer Have Access to Affordable Drugs To Save Their Lives.  You or your family could one day have to face this very same issue.

And I highly recommend reading (or skimming) a few articles about the cost of cancer drugs (how did these drugs become so expensive and why).  It helps to be armed with some solid information.  A few to get you started:

 Oncologists Reveal Reasons For High Cost of Cancer Drugs in the U.S.

The High Cost of Cancer Care — Your Money Or Your Life?

High Prices for Cancer Drugs Are Set At Launch — ‘It’s Where The Action Is’

Doctors Object to High Cancer Drug Prices

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Why I Love Twitter, Despite The Trolls

When I joined Twitter in 2010 (has it been that long?) I did so because it was the next big thing to do on social media. But I didn’t understand it. I couldn’t understand why one would limit conversations and interactions online to just 140 characters. Who does that in real life? And what did that really mean? Also, I couldn’t possibly figure out why anyone would want to follow me (and I still don’t). But, I decided that even though it sounded crazy, I would try it. During that long, long time of being unemployed I had plenty of time to goof off and learn about tweeting, retweeting and modifying tweets (while also looking for a job, mind you). As a matter of fact, had I actually been working, I probably wouldn’t have ‘met’ half the people I know on Twitter and I definitely wouldn’t be as tech savvy (whatever that means) as I am now. I know that Twitter has come under fire because of the overwhelming presence of trolls and other nasty elements. But just like in real life, I’ve learned to ignore the negative stuff I see and I just choose not to follow those whose tweets give me headaches. Don’t need the stress.

Notwithstanding the trolls, below are the top five reasons why I love Twitter:

 5.  I’m not immediately expected to ‘do’ anything. No liking, no posting, no commenting, no replying to previous replies. Sometimes I just want to read a story, without being a part of that story, if that makes sense.

4.  I can pick any subject or word, attach a hashtag to that word, follow that hashtag and learn anything I want to know (from Emmy nominations to the top NFL draft picks to the latest political uprisings to the top tech gadgets). And I love it! And then I can stop following that hashtag…no commitment, no questions asked. And I love it!

3.  I learn so much by following diverse people who have taken immensely different paths in life than I’ve taken. I follow thoracic oncologists and surgeons, engineering and science nerds and legal geniuses. And some of them they actually follow me back!

2.  I love that Twitter is a ‘real-time’ tool that allows you to find out what’s going locally or globally (24-7). And for a news junkie nerd like me, that gives me an intellectual high.

1.  Through my Twitter group #LCSM (Lung Cancer Social Media) I ‘met’ some of my closest friends who have been on this lung cancer advocacy journey with me since losing my mom to this disease in 2012. We’ve laughed and we’ve cried and I’ve never met a single one of them, ever. But if anything ever happened to them, I’d fall to pieces. My #LCSM Twitter buddies are folks I love for real and they are the ones I know I’d be BFFs in IRL (in real life). I don’t regret that lung cancer brought us all together. It actually makes me happy to know that a tiny bright spot can emerge out of something awful and dark like cancer.

Twitter has been a safe haven that doesn’t require much of me. And sometimes that’s all I’m looking for in a virtual relationship.