16 replies to this topic

[CDW]

Hello All,

 

I would be grateful if you would share some typical healthcare costs you incur while living with CML. I am planning to move back to the USA for family reasons and need to calculate typical healthcare outgoings. I've been in MMR for 7 years and am on Tasigna with no other complications. I know this is entirely variable based on the quality of your plan, but I'm after some general costs to gauge the level of outgoing.

 

- How much do you pay for monthly coverage and how much are co-pays to get your TKIs?

- What's your total annual outlay on healthcare out of pocket costs?

 

I am still of working age and I know the Medicaid donut hole is a problem, so I'd prefer not to go down that rabbit hole.

 

Grateful for any info you're willing to share.

 

Thanks

 

Chris  

[tiredblood]

~$106 biweekly my contribution to healthcare coverage. I don't have the amount of my employer's contribution to my health plan with me right now. $95/90-day supply of Tasigna (I think that was 2016). $155 for 90-day supply of Gleevec. I think it is $55 for a 30-day supply which is required for first three fills when you're new to the drug— then can get 90-day after that.

[Antilogical]

If you're planning to work, it will depend on whatever healthcare insurance plans your employer offers.  I'm on Medicare now, but when I was working, I paid $25 per month for my TKI drug.  It didn't matter which drug it was -- any drug in the tier 5 category was $25.  Right before I retired, they modified the benefits, so the monthly cost for tier 5 drugs went up to $200.  However, I was able to get a copay card from Novartis that lowered my cost to $10. 

 

Those were the good old days.  If you're up for it, check out the "Cost of Generic Imatinib just got higher!" thread to see the current copays on Medicare.  http://community.lls...ust-got-higher/

[tiredblood]

Like antilogical said, it does depend on the plan. I had one job that my initial copay for Tasigna was going to be $3000. Then, the next copays were going to be much less. There was a health savings account as part of the package. I just left and went back to my old job where the copay was the same all the time , instead of a big copay up front.

[CDW]

Hi, thanks for the replies so far, really useful. I am planning to work, got a couple of decades of work in front of me before I can retire ;-) 

 

I've been researching the Novartis co-pay card and it was useful to hear someone using it with success. I'm moving back to no job, so will have to buy insurance off an exchange - the plans I've seen have OK coverage, but the Tasigna requires a 30% co-pay, with a maximum out of pocket cost capped at ~$12,000. I am seriously hopeful that I'll be able to use a Novartis co-pay card until I get better insurance with a job. 

 

C

[cmljax]

The Novartis co-pay card does work, but you have to have commercial health insurance to use it. It reimburses up to $15,000 per year of your copays.  I am currently on UnitedHealthcare and got a letter about 2 months ago that said they knew I was using the Novartis co-pay program and starting in 2018 they would adjust my deductible and out of pocket categories $ for $ for any reimbursement I receive from Novartis.  Guess they have a way to track this.  Do not know if other health insurance companies have figured this out yet or not.  You have nothing to lose to try it and see. 

 

I start on Medicare on 4/1/2018, so no copay program is allowed anyway.  I know my out of pocket costs for Tasigna will go up due to donut hole and copays even in catastrophic for specialty drugs.  I am blessed that I can afford it and even more blessed that I am only on 150 mg per day right now which is a retail about $3000 per month versus $12,000 when I was on 600 mg.

 

Good luck and glad you're doing so well on Tasigna.  It beat the crap out of me for the first 9 months or so, but much better on low dose. 

[chriskuo]

To clarify, the donut hole is not a Medicaid issue, it is a Medicare issue.

 

Insurance costs in the exchanges vary widely depending on the state.  Do you know which state you are moving to and do you have a choice?

[CDW]

Hi, I'm moving to Ohio and will initially be buying off the exchange. From what I've seen, the insurers do cover Tasigna but have a hefty co-pay (30%) and i'll end up hitting the max out of pocket of ~$12k each year. Obviously, the Novartis co-pay card would help reduce the out of pocket cost.

 

I therefore (I think) have an idea of how much the monthly payment will be until such a time as i get a job with reasonable insurance. It's useful to see how much people are typically paying and what I could expect to pay once I secure decent employment.

 

Thanks for the responses.

 

Chris

[beno]

My copay with BCBS is $85 monthly.  I pay about $200 quarterly for doctor visit/PCR tests.

[IGotCML]

My monthly copay for Tasigna with my employer's health insurance is $100 once I hit my copay which occurs in the first month of the plan. My annual out of pocket cost for CML treatment (including my health insurance premiums) is around $5,000 per year.

[chriskuo]

Employer insurance for prescriptions is almost always better than Medicare Part D (even with employer subsidies for retirees) and given lack of copay assistance for middle-class seniors.  There is charitable help available for seniors with serious financial limitations.

[CDW]

thanks everyone for your replies. It's such shame the generic imatinib has not been the cost game-changer we hoped for. The Medicare donut hole is also a disgrace really. Currently in the UK, the National Health Service pays ~$40,000 per year for Tasigna/Imatinib and this was achieved through negotiation with Novartis. There is no reason the US Government shouldn't lobby Novartis for similar discount for the Medicare program.

 

Thanks again

 

Chris

[chriskuo]

CDW,

 

There is a reason that the US government can't negotiate drug prices for Medicare.

It is against the policy and philosophy of the ruling party in the United States.

There may be reasons why the ruling party could be overthrown in the future, but Medicare drug prices are not high on the list.

Remember that a minority of voters are on Medicare and of those on Medicare, fewer than 30% even enter the donut hole and maybe 5% get into the catastrophic phase.  Under current law, the donut hole is shrinking over the next few years, but politics could intervene for better or worse in the next few years.

[hannibellemo]

I'm on Medicare now but when I was working I paid nothing for my health insurance for the first several years and by the time I retired I was paying about $125/mo. My out of pocket was $1,000 and that is all I paid for the entire year for medicines and doctor visits. We did not have a separate drug plan, everything was covered under major medical.

 

I really miss that insurance!! 

[Susan61]

I do not know who remembers me.  Have had trouble getting back on for awhile, and hope I do not lose you again.  I have been on Gleevec since Oct. of 2000, and have been PCRU since 2001.  I am still on 400mg a day, and we have lost our insurance since my  husband is very sick and lost his job.  I am now on Medicare with Secondary.  I am trying to get help from Novartis, as I did the clinical trial for Gleevec.  I was promised that I would get it for free if we ever could not afford it or lose insurance.  I will be starting the process of all the forms etc.

No idea what I will do if I cannot get help.  Any input is appreciated with this.

I am at 0.000 on PCR Test.  Waiting for my most recent PCR results this week.

[Melanie]

Susan, I remember you! You were a big comfort to me back in the beginning of my journey in 2011. So sorry about your husband being sick! After so long PCRU, I would think you're a perfect candidate for cessation. Have you talked to your Drs about it?

Regardless, I sure hope you get some help from Novartis. You're one of the original pioneers. Praying for you and your husband. Take care!

[kat73]

Yay, Susan, you're back!  I've been wondering where you were and hoping you hadn't gone to the other LLS space or were in physical trouble.  Missed you and your counsels, your voice!

 

I am so sorry about your husband - I remember he had many troubles.  I wish him the best. 

 

I am sure the powers that be are going to honor their pledge to you as a Gleevec pioneer.  It would certainly be in their interest to keep track of such a long-term patient on Gleevec.  You should certainly persevere in that.

 

I remember how reluctant you have always been to go the cessation route.  People tend to forget that there is no guarantee for success just because of many years of PCRU - look at Trey's experience.  You do what's right for you.  But, it might be an option to consider now.