#LCSM Chat 8/27 8pm ET: Let’s get social… in our health?


This week’s chat is for anyone who has always wanted to know more about becoming a patient advocate via social media. Many think that it’s difficult to join or follow a tweet chat or that it’s hard to comment about topics that might be too personal. In some ways it CAN be difficult to share such personal stories with people you don’t know. However, you never know when something you share might help others. Also, no one forces you to share anything that you don’t want to share. Even if you’ve never participated in a tweet chat before, it doesn’t take a professional to follow one. If you’ve always wanted to join a chat on Twitter, but you were afraid or didn’t know how, this should be your first chat. You’ll learn some tips and you’ll probably discover that you aren’t alone in your journey. You also just might make a few friends! Read on for more about Thursday’s chat, 8/27, 7 p.m Central. Be sure to check out the links to some excellent articles about chats and other online communities.

Originally posted on #LCSM :

by guest host Christina Lizaso

The internet has obviously changed a lot of things. One of the most exciting and impactful changes for me has been how it enables patients to find each other and form disease communities. It began with discussion boards; now there are an amazing number of options to suit various interests, styles and comfort levels. The rise of online patient communities has been especially important for those with rare disease and diseases which carry stigma.

What is really exciting is to see patient communities go beyond internally supporting one another and reach out to make a bigger impact — with their data, in cross-disease advocacy and information sharing, and in working directly with doctors, healthcare workers, researchers, pharma and health IT professionals.

I’m definitely an admirer of the #LCSM community, which was formed and launched just prior to Dee Sparacio (@womenofteal) and I forming…

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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