21 replies to this topic

[kathym]

My name is Kathy Hawkins and I have CML.  I am working with the PA legislatures to have a bill passed that treats Oral Chemo the same as IV Chemo. This will significantly reduce the cost of our out of pocket expenses.  It will categorize our chemo in the medical benefit vs. the pharmaceutical benefit plan.  I have met with several Senators and House Representatives and we are coming down to the wire on this bill.  There will be a press conference on Tuesday, October 7th at 3:00 pm at the Pennsylvania Capitol.  I invite any of you in Pennsylvania to attend this most important cause with me.  We need to have the legislatures side with cancer patients instead of insurance companies. 

[reedgirl]

Thank you for doing this!  We are unable to attend, but I will certainly share this information with everyone I know and urge them to contact their legislatures to vote in favor of this!!!

[SUE]

Kathy,

 

Will this bill include Medicare?  It's my understanding that in those states that have passed parity bills, people on Medicare are excluded.

 

Thanks,

Sue

[kathym]

Sue, you can copy and paste this link.  It will give you all the information on the bill.  I have been working on this for 2 months now and I will fight for all of us!!  legiscan.com/PA/bill/HB2471/2013

[chriskuo]

These parity laws are state laws.  Medicare is a Federal program and is not affected by state laws.

Medicare Part D has its own rules.  Drug companies are prevented from providing Federal beneficiaries with copay support.

Under the ACA, the donut hole will be phased out by 2020, which will be beneficial.  In the catastrophic phase, the copays are limited to 5%, which is helpful, but can amount to $3-5K per year.

[reedgirl]

Kathy I sure do wish I could make it Tuesday. I have posted information on my Facebook page urging all my friends to contact their legislatures.  With all the insurance changes, I am very afraid of what might happen to our coverage if we are forced to change plans.  We currently have Highmark Complete Care, which has a seperate prescription plan.  We pay $100 month as a copay, which is fine we can handle that. The problem for us is there is a yearly cap a maximum on what the plan covers on prescriptions, $50,000.  With a 70mg script of Sprycel costing almost $5,000 we will max out soon.  After that I guess we are responsible for the total script, who can pay that in November and December?  If there is anything I can do to help with this bill, please send me a message, let me know I would love to help out in getting this passed in PA.  My email is grauvicreed@yahoo.com.

Thanks,

Audrey

[kathym]

Audrey,  You can contact Senator Don White ® and Senator Pat Vance ®.  One of the two Senators will be the recipient of the House Bill on Tuesday.  It is imperative that these Senators realize how important the passing of this legislation is.  The co-pay for many individuals is close to $18,000 per year.  This amount is too costly for many people to afford this life saving drug.  There are 34 other states in the United States of America that have already passed this legislation.  If any other cancer patients that you know of can make it, it would be a great help for the legislatures to see us there!

[mdszj]

Kathym - I live in PA and will contact both the senators you mention.  Good work!!

[Taylor]

I'm glad you're doing something like this. My state passed one in 2013. However, when I called my prescription provider, they said "talk to your medical insurance." Medical said "talk to your prescription provider." Meh. I have a co-pay card so I haven't pursued it further...trying to spare the headaches.

[SUE]

Kathy,

 

Thanks for the link, and for all your hard work in getting this bill passed.  I moved to Illinois last year, but previously lived in Pennsylvania.  I know how difficult it is to get the legislature to pass this type of bill.

 

I looked at the link and didn't see any mention of  Medicare, but from what Chris says I guess it's not even an option.  On Part D I'm paying more than $6000 per year now.  Even as the donut hole closes, I suspect the price of the drugs will keep going up.  There seems to be no limit on how quickly and by how much the price can be raised.  I'm on Sprycel(started out on Gleevec and got horrible side effects), so there's no generic coming up.  With more and more oral drugs being developed to replace IV chemo, it doesn't seem right to continue to allow the drug companies to charge outrageous prices.

 

Sue

[chriskuo]

Reedgirl,

Is your health plan ACA compliant? From what I understand, that kind of cap would not be allowed under ACA.
A CML patient needs catastrophic insurance and your plan seems to be the opposite of that.

[chriskuo]

SUE,

How much do you pay monthly once you enter the catastrophic phase of Part D?
I enter the catastrophic phase in March each year and after that I pay $261/month
(Capped at 5% copay). Fortunately my retiree health insurance covers the donut hole.

[reedgirl]

Chriskuo

  Our health plan does meet the new regulations. We've had this plan for many years, it is actually grandfathered in.  As of right now, it is affordable for us, it covers his visits to U of M to see Dr Talpaz, the only downfall of it is the prescription coverage which is separate from the medical part of the plan.  The script part has a 50 thousand a year max so of course with the cost of the pill we will reach that very soon.  I am very reluctant in switching insurance plans because I don't know that the visits to Michigan will be covered, or how much of the script will be covered, the PCR test, etc and I don't know how much the monthly premium will be.  I really wish they had left the insurance stuff alone, or found a way to not mess with those of us who are happy with what we currently have!!  I have tried contacting Highmark to gather information on new plans, costs etc but they have nothing available until the beginning of November, or late October. Although every time I call I get a different answer 

[mark1963]

Does this mean I would have to pay my full deductible my first month of the insurance year? right now I pay $30 a month after a $50 deductible for the gleevec through my prescription plan. My medical coverage has $1000 deductible but anything I do in network they knock off half the deductible and once that is reached they knock of half the copay for in network services. the math does not seem to work in my favor.

mark

 

[chriskuo]

Mark1963,

 

Do you have your own individual insurance or do you have employer health insurance?

 

Are you referring to health care costs or pharmacy costs?

 

The individual plan drug coverage has traditionally not been great for drugs like TKIs.  The ACA has established caps on out-of-pocket drug costs which should make a significant difference.

[chriskuo]

Reedgirl,

 

I bet Highmark loves you for paying $50K for TKIs.  That may be close to the discounted price they pay.

 

The health care exchanges for 2015 open on November 15.  I would be very surprised if you could not find a plan that includes your doctors that would be a lot less than $50K.  With CML, the drug costs tend to be much higher than the doctor costs, but any plan that qualifies for the exchange should have much more reasonable caps than you currently have.

 

When you have CML, it really pays to become an insurance expert.  When my former employer converted the retiree drug coverage to a plan integrated with Medicare Part D, I had to spend the better part of a year getting the insurance company to calculate the copay correctly instead of in their favor.

[reedgirl]

I only pay $100 a month as a copay.  The insurance company say's they will only pay out a maximum of $50k per year on scripts.  It doesn't take long to reach $50k with these pills!  From what I have seen trying to search plans, the monthly premium on these new plans still puts us up way higher than we pay now, not counting what copay's deductibles etc we'll have to add also.  It's a lot to consider, way more time is required to search it out than what they give a person.  I can't understand why there is nothing available now, but a few weeks before open enrollment....wa la there they are available to see.  I need more than a few weeks, guessing they just don't want us studying and researching this stuff!

[SUE]

Chris,

 

When I am in catastrophic, I pay $257 per month.  I straddle catastrophic and donut hole in either February or March(not sure which), and the following month I start regular catastrophic.  I paid a higher catastrophic for Gleevec, but I changed plans when I started Sprycel, so I'm not sure if the price difference was due to the plan or the medication.  I haven't looked into the 2015 plans yet to see if there will be something that will work better for me.

 

Sue

[chriskuo]

Sue,

 

Most of the Medicare Part D plans seem to charge the max 5% in catastrophic.  Your donut hole should get smaller each year until it goes away in 2020.  I don't see much hope of further improvement in Medicare Part D.  All of these oral parity attempts are geared toward private insurance for under-65s.

[mark1963]

Chris,

 

I don't understand. will it still be covered as a prescription or as a health care cost? I have an employer paid plan through a local hospital

mark.