12 replies to this topic

[thatguy]

Got a notice in the mail that my insurance provider (part of United Healthcare) is reclassifying Bosulif as tier-4 for 2018. Called the co. they informed me that this means I'll have to meet my yearly $3000 med deductible then pay 50% each refill. So that's a cool $7500-ish a month. Called Pfizer, they referred me to their $0 copay card which covers $25000 of copay per year. Now waiting for further financial assistance approval..

Nuts. I can't help but think the market can't sustain this crap.

[xxgirl]

Thatguy I am not an expert on insurance AT ALL, but does your health plan have a yearly out of pocket maximum?

[thatguy]

That's a very good question, I'll check!

[kat73]

thatguy - It's not a market when one party has a life or death requirement for the goods.  There's no pushback when there is no choice to walk away and say, nah, too high, I'll pass.  I'm afraid the only remedy is going to be political.  I'm so distressed by our elected representatives' inaction.  They do not hear us and they do not care.  I'm not a radical leftie, but I feel a revolution coming on if they don't address the vast numbers of people, who through no fault of their own, are having their lives ruined by these outrageous drug prices.  No reasonable person, no prudent person, no careful person who works hard and saves and has educated himself could possibly plan for these numbers.  They are draconian.  There will be more and more of us - will we organize ourselves into a force, or will we just find a way to keep paying, silently, because we have to?

[Lori's okay]

Kat73,

HEAR, HEAR!!!  Could not agree more, you've said it perfectly!!

[ROMO]

I have decided that Marijuana will cure my CML before

science and politics. Before enough money, or the love of Jesus.

 

I have no ansewers.

 

 

 

 

Romo

[chriskuo]

Have your doctor file for a tier exception?  In a couple years, I have been successful in getting the tier reduced based on a statement of necessity from the doctor.

[campanula]

It's not a market when one party has a life or death requirement for the goods.  There's no pushback when there is no choice to walk away and say, nah, too high, I'll pass.  I'm afraid the only remedy is going to be political.  I'm so distressed by our elected representatives' inaction.  They do not hear us and they do not care.  I'm not a radical leftie, but I feel a revolution coming on if they don't address the vast numbers of people, who through no fault of their own, are having their lives ruined by these outrageous drug prices.  No reasonable person, no prudent person, no careful person who works hard and saves and has educated himself could possibly plan for these numbers.  They are draconian.  There will be more and more of us - will we organize ourselves into a force, or will we just find a way to keep paying, silently, because we have to?

Couldn't have said it better, kat73 - I agree wholeheartedly.  I have not gone public with my CML, but have decided the one reason I would disclose my condition would be to join a movement dedicated to reducing drug prices and saving lives.  Count me in.

[thatguy]

thatguy - It's not a market when one party has a life or death requirement for the goods. There's no pushback when there is no choice to walk away and say, nah, too high, I'll pass. I'm afraid the only remedy is going to be political. I'm so distressed by our elected representatives' inaction. They do not hear us and they do not care. I'm not a radical leftie, but I feel a revolution coming on if they don't address the vast numbers of people, who through no fault of their own, are having their lives ruined by these outrageous drug prices. No reasonable person, no prudent person, no careful person who works hard and saves and has educated himself could possibly plan for these numbers. They are draconian. There will be more and more of us - will we organize ourselves into a force, or will we just find a way to keep paying, silently, because we have to?

I wish people were as motivated as we like to speculate. Let's start it Kat, since I admittedly lean right-and have effectively black sheeped myself on this board by making no secret of it- it naturally came out as we needing a T.E.A.F party!

T- TKI's are
E- Expensive
A- As
F- F***

Catchy right? Let's get a social media campaign rolling, since there seems to be an abundance of social justice warriors out to "raise awareness" every where you look now days, our numbers should grow fast. (Part sarcasm, part dead serious)

And there is nothing short of nobility to this cause, really. Ethically, I almost see the patenting and distribution rights in violation of the Good Samaritan law. Is it not potenially denying help to those in serious life/death need? Maybe this is why there are assistance programs under the manufacturers...maybe they're legally bound in some way?

Its such a sticky situation. I want to be fair and say "well these scientists trained extensively and devoted their lives, so they deserve unlimited return for their accomplishments"... the aggravating aspect is that the drug companies can set these ridiculous prices because insurance or government will subsidize the costs. If we didn't have the subsidies, the prices would have to be driven to reasonable levels. The profit by volume motto would be great to adopt, since a dead customer is no longer a paying costomer, seems like it might work? Sam Walton should buy these companies.

But it's quite an unneeded burden to stress about this stuff constantly. Not like cancer is a life asset anyway...and I Guarantee things would change if these people or their families were in our position. But it's natural. Nobody cares until they've experienced it.

[thatguy]

Have your doctor file for a tier exception? In a couple years, I have been successful in getting the tier reduced based on a statement of necessity from the doctor.

Thanks Chris, I'll check into that if needs be.

[ROMO]

"Nobody cares until they've experienced it."!

 

...Words of Genius.

 

I'v read that major drug companies are buying up

all research from independent labs to either patent the 

science or "spike", the science.

On all oral cancer chemo therapy. Oral chemo has no price protections.

If you take your Chemo by mouth you have less coverage.

If you take it intravenous it's covered.

Old style is covered

New style not covered.

 

 

We are expendable.

 

Romo

[kat73]

My best advice:  Let your elected officials hear from you - a lot.  And make sure LLS has a good lobbying presence in Washington.

[kat73]

Expansion on above:  Try to connect with staff, especially the guy's legislative aide.  Start with the constituent services at your local level.  A thoughtful, well-written, personal (not form) letter - short and to the point, as unemotional as possible - with VERIFIABLE facts about your situation (our situation as well) in it will go much farther than petitions, sit-ins, placards, etc.  It's when these guys start getting a LOT of letters (real ones) and hearing from a LOT of constituents that they start to pay attention.  If you can get face-to-face with the legislative aide, that's the best.  Let LLS know this is what we want them to do, also.

 

Because CML is uppermost in our thoughts 24-7, we forget that the rest of the world knows very little about our travails.  The two main things they (our elected officials) don't "get":  One, they are largely unaware of the enormity of the drug prices - they don't see the individual specific numbers that we discuss here on the forum.  This is a middle class problem - when your income precludes subsidies or free stuff, you are bankrupted eventually.  Unless you have the insurance that congressmen have, or government workers or military have, or if that coverage changes someday, you will be devastated.  They also don't understand how Medicare lets the middle class down specific to these astronomical drug costs.  Which brings me to the second thing they don't get: Look at the survival curve for CML, guys!  We and our financial problem are growing every year, exponentially, especially the Medicare crowd.  Both those points are politically relevant to them.