so long Promacta, it's been good to know you

Warning...Danger Will Robinson....This is a 'venting frustrations rant'....so stop reading now if you want to.
I've been on Promacta for nearly 3 years. For me, it has been the best ITP treatment I have tried over the past decade. It has kept my counts steady in the 40k-50k range on just 50mg/day dosage, has easily tolerable side effects, and I could afford the $80 co-pay per month.
Two months ago my wife lost her job and our insurance went with it. So I got insurance for both of us again through my employer. The new insurance premium is still around $300 a month. My HBP meds were only $1.00 more a month for co-pays, cool. But.....Promacta is another story.
To stay on Promacta now, will cost me an additional $3000 from now through January, then another $3000 in January (maximum out of pocket amount). You just have to love it. Where is this 'affordable health care' and who is receiving it? It sure as heck ain't coming my way! I'm half-tempted to quit my job (of 31 years) and go on welfare so I can afford to get decent ITP medication again.

Looks like it's back to Prednisone very soon. I've been taking a half-dose (25mg) of Promacta until it runs out in a couple more weeks. I cannot stand Dex and most of the immune suppressants I took at one time stopped being effective.
Unfortunately, I'm not sure right now if I can even afford to see my hematologist. The new insurance takes my hematologist visit from a $30 co-pay to a $35 co-pay plus 20% of test costs....which will put each visit in the neighborhood of $200 for me now (under yet a separate $3000 out of pocket). Not so bad if it is the 'twice a year' schedule that I've enjoyed on Promacta....but to do it constantly while monitoring another treatment is out of my range. Aaaarrrrgggghhhhhh.

At this point, I am seriously considering the option of 'no treatment'. I usually drop to around 4k very quickly without treatment. I'll just have to locate my big foam-rubber helmet and wear long sleeves again!

My apologies, I had to vent. It is now safe to carry on with the normal order of business.

.

It is OK to vent!! Mentally it feels good to let it out! The cost to treat a condition is unbelievable!! I suppose the drug companies figure in the risk of Lawsuits in the cost. I do not see why an Insurance co can decide what they are going to cover. I pay around a $500 a month premium, $1,000.00 deductible. If I need treatment, they Damn well better cover it!!! Otherwise the Insurance co can refund my premiums if they are going to deny coverage!!

WJ, I love your posts here and I wish you the best in health and everything.

I am pretty sure you don't really think that the public insurance provided when you are on welfare would be more affordable and provide the level of care and the doctors and medications you have come to expect from your private insurance plans? And with public assistance, how would you like to have $2 in foodstamps to pay for each meal?

I know money is tight these days and a lot of us have to make hard unpleasant choices. My sister is working three jobs, I was out of work for a year and just catching up. The job I finally got is not a good situation and I only keep it so I can have health insurance. What is your health worth? Isn't it worth almost everything? Please stay healthy, it sounds like Promacta is what you need.

I guess I'm prickling at the political subtext of your post, maybe you didn't mean it that way. The bottom line is that healthcare in the US is still provided by for-profit interests, including the insurance companies. It isn't a right. I wish it was. Have you contacted the drug company to see if you can get a price break? Have you negotiated with your doctor about office fees and which tests are done? In 2014, the new healthcare law will allow you to have an insurance gap and not have pre-existing conditions excluded. Many other provisions kick in over the years coming. Healthcare overall is being made more affordable through the affordable healthcare act - but of course certain elements are still expensive - the entire supply chain of healthcare is largely funded by private, for profit interests - so who is going to pay for that - insurance premiums and the other payments from consumers. The government is not paying for our private healthcare.

I'm overtired today and stressed out, and this might come off as harsh and I'm sorry, we're in very political times and that's how I'm seeing the discussion in part. Things that should not have to happen: your wife shouldn't have been kicked out of her job. You shouldn't have to go broke for healthcare. You shouldn't have to expend enormous amounts of time and energy and be incredibly stressed out finding a way to stay healthy despite being kicked around by the economy and the healthcare industry. I'm really sorry to hear about your troubles.

We're a community here, how can we help besides listening? Can I assist your wife with her resume (or you with yours, if you want to change jobs to get more affordable healthcare) - that's my expertise? Can I not give you a huge migraine when you are just asking for some emotional support?
Erica

Jack:

Coming from someone who also REALLY depends on health insurance, I hear ya! I have been pushing myself to keep working for years just to keep my insurance. What good is it though if it kills me in the process?

My monthly premium is $660. That is the amount I now have to cover when I elect COBRA (I am quitting my job). I still have office co-pays of $25.00 and pay around $180 a month for medications. It stinks when you become more expensive than your annual worth. I've offered to off myself to help the family defray costs, but they won't go for that.

There are no easy solutions and I am so sorry that you are losing your treatment. You have always been so positive and upbeat about your situation and I am to see you upset. (Do not ask why I used an icon to depict my emotion. I'm not usually that weird).

There is no perfect solution to any of this for any of us. I wish there were. Erica is good at problem solving, so maybe you can take some tips from her (if you ever speak to her again :whistle: )

I have also worked 3 jobs.......for the past 11 years.
I am an engineer by profession, I manufacture hobby items (slot car tires and resin castings) which are sold worldwide, and I play music in a biker-bar band on the side. I normally work 7 days a week already....guess I need a fourth job and a time machine? That's exhausting just to think about.
BTW: I understand the health care industry fairly well. My wife worked for 16 years for BCBS/Anthem insurance, then for the past 15 years managing a large family practice center (part of a very large local hospital system).
And no, it was not meant to be political.

Any way, it was simply a frustration rant. My apologies.
I will shut up now, go to lurk mode, and return you to your regularly scheduled programming.
.

Weirdjack, please don't go into lurk mode. I'm sure everyone would like to know how you're doing and if you manage to resolve the Promacta issue. Aren't there organisations that help fund these expensive drugs for patients?

Nah - we need you around here! No lurking for you!