On Imbruvica for over 4 years, fully paid for through commercial insurance. Got letter in October indicating that Biologics, specialty pharmacy from which i have been getting meds, will no longer be in network. With suggestions about switching to in network pharmacy.
Long story short, after 2 months of gentle run arounds, and a marathon call with benefits manager, seems I will be fortunate to get meds with $23,000/year copay, deductibles.
Very grateful for years of meds, not looking forward to forkng out pretty steep new costs. And truly shabby way of getting information from insurance company, after 25 years of premiums.
Any suggestions? Anyone else in this boat. Am in United States, BTW.
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Lenny123
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Urgh! I also have Blue Cross Blue Shield and I will tell you that I am incredibly disappointed. Due to my markers at this time, that is probably the choice for my first line treatment.
I am in Massachusetts, I know that I am going to do a little digging and I fully intend to contact my state and federal representatives.
(KHN is not connected to Kaiser Permanente Insurance. If you are able to switch insurance I think I saw imbruvica and venetoclax is covered by Kaiser Permanente. I gave it extra scrutiny since I am on watch and wait.)
I agree with Sandy, contact the office of your congressional representative, and followup with a detailed letter explaining what your health insurer is doing. Be sure to copy your local Blue Cross, the prospect of congressional pressure will be more difficult for them to ignore with the Dems in change of the House of Representatives. Political issues concerning the cost of drugs and the behavior of health insurers are going to be a very big deal over the near term.
I understand.. I was only referring to the next open enrollment when you would be able to make a choice to change carriers. Best wish and I hope this isn’t a trend with other ins Carriers starting to take away expensive medications. John
I think the only way our health care in the United States will change is if they allow people to shop out of state. Open all states up to sell to anyone anywhere in the country.
The major carrier’s don’t want to compete against themselves state by state. It’s a scam called collusion to fix and to raise pricing as they see fit. Our political system will take bribes via campaign donations to leverage the political powers to butt out of there business. As a result a family insurance premium as go up to about 1800 per month. When is it going to get to the point you can’t afford insurance.
Speaking of Amazon; when you get ready to purchase an item through them they have a box in upper left that takes you into their leukemia/lymphoma site. This then gives a percentage of your purchase to the society. I use it as LLS has been so good to me. Carole
Was “biologics” just placed out of network - and another specialty pharmacy put in its place? If so, what is that other specialty pharmacy?
I’d check with your state insurance commissioner if a health insurance company forces you out of network for a cancer drug. This is an “ACA” plan, right?
What level plan is it? Gold? Silver? Bronze? Sorry you are being forced into this mess. Perhaps one of the blood cancer societies, etc - can take up the slack in costs? The strange thing is that this would likely affect all cancer patients on biologicals, not just CLL patients - and that is a LOT of people.
I guess the relevant question would be if Blue cross or Blue Shield has totally cancelled specialty pharmacies - or have they just changed them? It seems to me that no mainstream health plan would simply dump all specialty pharmacies. If plans did this without telling subscribers who were taking expensive drugs (supplied by specialty pharmacies) - and give them a chance to find other insurance, then they may be open to quite a few bad faith lawsuits.
I was under the impression (that at least in the USA) that specialty pharmacies are the only places that will handle most 6-figure drugs - like Imbruvica. And Imbruvica is one of many 6-figure drugs - especially for cancer. There are some checkpoint inhibitors that retail at $500,000 a year. Most states have oral drug -- chemotherapy cancer drug parity laws and there are Federal laws and protections as well. Please see ...
I just don't think it's legal in the USA to charge that much for Imbruvica given most oral drug parity laws. It wouldn't be the first time an insurance company went afoul of federal law.
Ask your pharmacy if there are any special programs that you qualify for since you have commercial insurance through your employer. My pharmacy has me in a program in which my co-pay is $10 a month. You have to have commercial insurance to qualify. You will see this program on Imbruvica's website. It will pay up to $25,000 in co-pays. I've been on this program for the last 3 years.
I have to wonder why Imbruvica is as expensive as it is. At $11,000+/month, this drug is either made of platinum or the company is using R&D to reap humongous profit. Did the company receive federal funding while being developed? I’m no fan of insurance companies, but this is the kind of incestuous co-dependent relationship where companies can charge outrageous prices, because insurance will pay; and because insurance pays, we don’t feel the gouging but we are keenly aware of the necessity of having insurance. If federal funding supported R&D, we are double-paying to get the drug.
If not for the profit motive we wouldn't have drugs such as Imbruvica and people would die much sooner from diseases like CLL. The cost of R&D is mind boggling and investors will only invest if there is a pay back. Unfortunately, there is an economic cost of treating our disease and others like it. I understand the frustration of high cost drugs but the alternative is worse. It is a complex situation. The steep costs of bringing these drugs to market must be paid to ensure future development. Who should pay and how much? What is a life worth? I don't have the answers but it isn't all the fault of the insurance and drug companies.
It isn't about profits but rather economics. And nothing is above economics, not even healthcare. The real question is who should pay and how much? The simple solution from your perspective is the drug companies and insurance companies should earn less to reduce patient costs. These are nameless and faceless organizations so they are easy to attack. Should we drive their profits to zero? Perhaps but wouldn't this dry up investment and hurt us all in the medium and long run? Should we tax more? Increase insurance premiums? Limit access to care for only those who can afford to pay? What if someone finds a cure to CLL but the cost is $2,000,000 a patient? Does society owe us this treatment? Try and broaden your perspective as you are way, way over simplifying a highly complex problem.
Hopeless dreamer that I am, I believe there are fundamental requirements for adequate life, among them, healthcare. Without a healthy society, you have nothing, so I don’t put profit above healthcare. Economics—recouping expenses for work done—including a reasonable amount for labor—is not the same as charging outrageous prices for something, because deep pockets will pay.
This discussion has veered away from forum topic and into politics, and I apologize for boosting it in that direction. If we want to continue, we should probably move it to a different venue.
It’s OK to dream but don’t lose sight of reality. And remember, the best solutions are often about compromise. A lost art in many parts of the world these days.
Upthenorth, you are completely correct. Please don't believe the rhetoric of HopeME. America is the ONLY civilized country in the world without non-profit, single payer insurance. At the current economic structure, Insurance executives are all multi-millionaires on the backs of sick and dead citizens. Health care is a basic human right and just because one draws the short straw, does not mean they should remit everything they worked for in their lives. The whole premise of insurance is that you pay into it and it takes care of you by mitigating your costs. If a person's house burns down, doesn't insurance pay for most of it without bankrupting him? If you are in a car accident and your car is totaled, doesn't insurance replace it? You don't have to purchase a new car do you? The model of developing new drugs is separate (and should be) from insurance. Why else could countries like Canada, the UK and Switzerland continually crank out new and life-saving drugs. America is not exclusive in that arena. Most pharmaceutical co's are publicly traded companies in America. They make TREMENDOUS profits this way.
HOWEVER, if you've noticed, doctors have been deprived by insurance companies of practicing medicine due to the greed of insurance. They are timed to the point of negligence, restricted as to what they can offer and totally depleted by battling insurance due to an UNPRECEDENTED number of denials by insurance. One doctor I know has gone to cash-only and was able to let go 8 staff who spent 100% of their time battling insurance! Those staff could work for a government controlled program like Medicare, only for all. I say, let Medical Professionals practice what they are trained to do. They are not children that should be told what to do! Medical care has been dumbed down and stripped to the point of starvation.
HopeME, I challenge you and anyone reading this from the USA to ask you doctors and staff how they feel about single-payer. I have yet to have even one tell me that care and their profession would vastly improve. I have been travelling the in medical miasma for over ten years (my daughter also has a chronic disease) and the stench has become overwhelming. Please, do your research patients in America. And Upthenorth, don't get confused, what is happening out there is wrong - stick to your gut feelings!
Hi Global: Your present position seems intractable so I am not going to engage in a debate to try and change your mind. And as Upthenorth mentioned above, this forum probably isn’t the place to have such a debate, anyway. The one favor I’d ask of you is that with the New Year upon us you resolve to listen to and consider other perspectives regarding how to fix the US healthcare system. Despite your belief, the solutions to its problems are not black and white otherwise they would have been applied long ago. And as I stated previously, resolutions to complex problems are often found somewhere between the extremes. Be well and have a Happy New Year!
If I am so intractable, it's a wonder you continue on to ask that I listen to the other side - a bit of a contradiction, neh? Add to that, you are incorrect in that assumption - I would love to hear more on how you justify crippling sick people with the debt of healthcare. My voice is from the experience of my parents who lost everything to a tragic but common health event a scenario I am trying to avoid myself. Please explain beyond that of economics and in comparison with other countries who manage do so without crippling their citizens. I am all ears.
The fact that Lenny123 expressed his/her feelings of "shabby" treatment tells me that this IS the forum for discussion. Have you looked at other comments? As sick and declining citizens, should we heap on the worry of paying increasing bills, accumulating debt and ultimately going bankrupt (BTW the #1 cause of bankruptcy in America is healthcare)?
I suggest you open a forum of your justification and let others chime in. Maybe beginning with how other countries manage to produce new drugs without passing costs to patients? Also, did you know that the federal government is the largest contributor to pharmaceutical development? Isn't that gauging patients twice? And who is getting rich? I TRULY look forward to your response.
Finally, for the New Year - please accept MY
challenge of asking your health care providers (docs, nurses, techs, phlebotomists, etc) how they feel about single payer. Good luck to you in your journey, I look forward to your post to answer these questions.
Clearly the USA spends far more for health care per capita than any other nation: en.m.wikipedia.org/wiki/Lis... and life expectancy is sadly less than that of other nations spending less per capita: en.m.wikipedia.org/wiki/Lis... Every nation can learn from other nations how to improve various aspects of their health systems. Arguably the USA has significantly greater opportunity than most countries to identify changes to implement to the benefit of its citizens, given it spends "more for less". Sadly the sheer complexity of the US healthcare system, complicated by vested interests and its highly political nature, make the necessary bipartisan support to explore different approaches to achieve more for less apparently impossible.
The individual experiences of the members of our international community provides us with a wider perspective whereby we can appreciate the respective strengths and weaknesses of our different country approaches to health care. Unfortunately our ability to be involved in making worthwhile changes is somewhat constrained, so I applaud those in our membership who are contributing to those efforts.
This is a reminder to all of us to be respectful of the opinions of others and follow our community guidelines: healthunlocked.com/cllsuppo...
Thank you,
Neil, on behalf of our community volunteers and admins
I think part of the reason Congress hasn’t cleaned up the healthcare mess is the enormous influence pharmaceutical and insurance lobbies wield. Ironically, taxes support pharmaceuticals and pharmaceuticals spend big dollars working against any legislation that would make healthcare sane. Insurance is a good idea gone stupid: the incestuos relationship between insurance, the medical community, and pharmaceuticals has created a monster that feeds off our health to our detriment and their huge benefit.
Perhaps. But somehow the majority of the world’s medical innovation occurs in the US. The best doctors, hospitals and drug companies are domiciled here. To illustrate, I have heard of lots of folks coming from Canada into the US for CLL treatment but I never heard of anyone going to Canada from the US for treatment. It also seems the most cutting edge treatments are available in the US first. Yes. Cost per-capita is high and access is uneven but I wouldn’t want to be anywhere else than the US for my healthcare. As I have said before, be careful what you wish for because you may get it.
The standard of care and the new drugs for CLL reflect international expertise. Please don't overlook three very important factors that result in this US focus:
1) Venture capital
2) Population
3) Marketing
In more detail, (1) much drug development happens in the USA because elsewhere it is much harder to find investment seed capital. Few companies can afford to buy out successful start-ups. Then the drugs are made in China! Venetoclax resulted from Australian research, with early trials in both countries, but needed overseas funding to bring it to market.
(2) About half our membership is US based, yet our parent charity is UK based
3) As has been mentioned elsewhere in this post, the USA's provision of health care follows a "for profit" model, more so than the universal health care model implemented most elsewhere. In countries with universal health care, there's no need for government funded health care services competitively advertising! There are only two countries in the world where direct advertising of drugs to consumers is legal - the USA and New Zealand. Marketing increases awareness. It is not a good predictor of effectiveness! I think a country that spends considerably more per capita on health care should be able to advertise much better than 34th position in life expectancy rankings...
Arguably, the USA is the place to be if you have CLL and you can afford treatment. Financial toxicity is a consideration too!
Thanks for your insight. I agree there are many complicating factors not only with CLL but with health insurance as well. Let’s hope progress keeps happening on both fronts.
One thing you left out was the cost of said insurances and what happens when you USE them. Let's look at homeowners insurance.. Say your house burns down and you make a claim. Is your rates going to climb? What happens if you have a fire one year and then a house robbery the next?? If you are fortunate enough to keep your insurance (most would be dropped due to high risk), your rates WILL INCREASE accordingly. The more risk you you become, the higher your premiums.
How about car insurance? Same difference.. The more you use it, the higher the premium until you get to an un-insurable point. At this time, you move into a high risk pool and pay much higher premiums for much less coverage.
So, where is the cut off point? I have CLL and I am on Ibrutinib as well.. In a single payer system, should someone who is sick pay more for insurance? I mean, I use it more than someone who isn't sick. Should the type of sickness I have go into how my "premium" is handled and/or calculated? Like you said, look at car and home insurance, right? The problem with this comparison is what I laid out above. You are penalized for use. And if you use it too often, you lose it all together.
Apples and oranges, as far as comparisons go.. May be more like apples and green beans..
Drugs are developed in combination of people donating to research,state and federal grants and by the drug companies. Even down to the local county city and town have involvement waving property taxes and county sales tax. So we are paying for these drugs in many ways. But if you were to ask the drug companies they would say they spent billions to make the drug. That may be true but how much of those billions actually came out of the drug companies pocket !! I would say tax dollars paid most of the cost.
Everyone complained about the affordable Care act, a/k/a Obama care, but now that it is being removed, so are all of it's benefits. I tell you that this countries insurance problems just go from bad to worse. I wish I could tell you of a solution, but unfortunately, this just seems to be getting worse. I fear by the time my husband needs treatment there will be no coverage at all. I'm sorry for your situation.
I don’t understand. What is it about your BC-BS plan that takes ibrutinib and makes it available at $23K incl. co-pay and deductible? Are you in one of the few states that does not have a drug parity law? Even so, the Federal drug parity law would kick them hard for charging that.
What follows is an e-mail received from Diplomat Specialty Pharmacy; it is relevant to this discussion because Diplomat is affiliated with Biologics RX. Clearly something is going on between the Diplomat family of companies and some U.S. health insurers. I have not figured out what this means to me, just waiting for the other shoe to drop.
"Hello,
A few of our consumers have let us know about confusing letters they received from their insurance companies. We wanted to reach out to you to provide some clarity. Some insurance companies own their own pharmacies and might send you communication letting you know they would like to you switch. These communications can make it sound like you must switch, but this is often not the case. You might still have the freedom to choose the pharmacy that best suits your, and your family’s, needs.
If you do receive a letter of this sort, please reach out to your Diplomat Specialty Infusion Group consumer advocate so we can help you learn more.
This sounds like the answer. Diplomat and other specialty pharmacies are losing their contracts with insurers. Insurers are either creating their own specialty pharmacies - or hooking up with others and asking subscribers to switch. Some may forgetting to tell policyholders to switch, and places like diplomat come back possibly to tale advantage of the situation.
To me - it sounds like Diplomat has lost “in network” status and is trying to keep plan subscribers using their services and out of network. If you swiched to your insurer’s new specialty pharmacy, it might be cheaper than staying with your old (now out-of-network) pharmacy.
Diplomat is not making this clear as they probably want to retain as much business as possible and are hoping that people won’t change. It may be cheaper to change.
This is speculation, but everything I am reading points to that. If you called your insurer directly, they might have a different story to tell you than Diplomat is saying.
This is scary. I have BCBS but have not received this notification. The specialty pharmacy might be able to find a grant to help pick up this cost. It’s based off your income.
Unfortunately I do not have any answers for you and hope you'll be able to find a way soon to resolve the financial burden. Not an issue for us at the moment, but your example certainly highlights that it can be an issue at some point.
I have Blue Cross (live in USA) and when Ibrutinib was mentioned I was thrilled it would be covered. I ended up with FCR chemo also covered. So this is sad they won't pay anymore! Hopefully I have long remission but felt comfortable knowing I would have Ibrutinib paid for if needed. Good luck!
This is very concerning to me. I'm also on Ibrutinib and get it through Biologics. I'm also have Blue Cross Blue Shield through my work. I just recieved a letter from them earlier this week that I've been approved for Ibrutinib for another year.
Thats what I’ve been refereing to when mentioning drug parity laws. I don’t think (under the federal law alone) that any insurer has the right to tell you Ibrutinib or not.
All the drug parity laws make it clear that insurers cant impose prior authorization, step-therapy, etc. they have to cover the drug - at a rate that would make it the same cost as provider administered chemotherapy.
So that “approval” letter from BC-BS may be a whole lot of “BS.” They are required to cover Ibrutinib whether they like it or not.
Lenny - you are so right and this is so wrong. In addition to egregious costs, I spent on average 20 hours a week just keeping up and challenging for-profit insurance companies. See my post below to Upthenorth. You should look into and support those groups in favor of the patient and doctor, not for-profit insurance companies. I belong to Health Care for All here in Washington state - ironically recommended by my primary doc of over 30 years who is retiring due to the oppression of insurance companies! There is also Health Care for All or see what your state is doing. This is insanity! My state is even working on its' own health care program. Forget the feds!
I'm on Venetoclax through Diplomat. My oncologist called to tell me they'd received notice that I would now get my meds through another specialty pharmacy. It was the new pharmacy that made that call to the Dr. Anyway, I called them to make sure I was in the system and could get refills and they'd never heard of me. We've been trying to figure out who made the switch, and I was pretty sure it was probably my health care provider. United Health through Medicare part D. Still haven't gotten any answers and getting nervous as I only get a one month supply at a time. Yikes!
Lenny- Which state are you in? I have BCBS of TX through a small group employer. Have you asked to see your plan's drug formulary list? I received ours when selecting a plan for 2019. Ibrutinib is still on the list and is a tier 5, requires prior auth, and has dispensing limits, but it is still on the list of covered drugs. Thankfully our state has an oral chemotherapy parity law so I have never had to pay outrageous copay amounts for my monthly medication. Blue Cross also has a "coverage exception form" that you may be able to have your physician complete which might allow you to get the meds covered. I can't help but wonder what happens to all of the medication that people can no longer take due to side effects or efficacy. It seems as though we should be able to pass those expensive pills to people in your situation who might need to continue to take them until issues like this can be resolved.
I am in NC as well, and have BCBS supplement for my Medicare. Is your insurance through your employer, or private? I am on a trial now, so not paying anything; but wonder if Medicare would be treated the same as yours.
wonderful discussion. Do want to weigh in on US health care which is so very poorly understood. Fact is government( ie taxpayers) already pay for easily 80% of health care in the United states, but few understand how.
Medicaid/ Medicare-at least 30%. Then military( tricare, VA etc). add in local and state insurance. Then the big whopper- so called commercial insurance, through work. Since 1948, this has been tax deductible, through work place, so companies pay for workers insurance trough pre tax dollars. and if the company pays for really great( so called Cadillac coverage), the taxpayer picks up the bill. in fact health care coverage, through employers is the single biggest entitlement, by far.
And as a bonus, training of doctors is paid for mostly through Medicare at a cost of about 5 billion yearly.
So in completely non political, purely economic terms the only thing that begins to make sense is for the government to do a single payer system, something like medicare for all. Not a panacea lots of problems but far better than existing.
I'm assuming you are not yet on Medicare and have BCBS as private health insurance. You might try to determine whether it is Biologics they are dropping, or if it is Imbruvica. If they still cover Imbruvica, there are other specialty pharmacies, such as Onco360 or Diplomat, that BCBS will still have a relationship with. Glad you have contacted Biologics. They should be able to determine the fine points, either to find a way to continue coverage through them, or to recommend another specialty pharmacy. Good luck.
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