Pat’s Place: Battling My Health Insurance Company To Pay For My Myeloma Treatment
Learning that you have multiple myeloma can be a shocking, life-changing experience. It certainly was for me!
There are tests, painful procedures, lots of drugs, and the anxiety of whether your treatment is working.
Being diagnosed with multiple myeloma was tough enough without having to battle my insurance company to pay for the therapies my doctors recommended.
In some ways, I found dealing with my insurance company at the time was more stressful than living with my cancer.
At age 51, I was relatively young and otherwise healthy. I was also self-employed. But even though money was tight, I had the foresight to purchase a Blue Cross/Blue Shield major medical policy four years before.
When you invest in a comprehensive insurance policy from a well-known company like Blue Cross/Blue Shield, I expected my necessary medical expenses to be covered without investing a lot of time and energy.
Was I wrong!
Early on, I was relieved to learn that the Mayo Clinic, which was located just over two hours away from me in Rochester, Minnesota, was on my preferred provider list. So far, so good.
But when my myeloma specialist prescribed Revlimid (lenalidomide), which at the time was a new, oral chemotherapy drug, my insurance company refused to authorize it. It turns out that Revlimid was not approved by the U.S. Food and Drug Administration for newly diagnosed multiple myeloma patients. My insurance company insisted I use the older version, thalidomide (Thalomid), first.
With help from my doctor and Mayo Clinic insurance counselors, I appealed the decision three times. The first two appeals were denied, based on the fact I had never been treated with another therapy before.
But the third time, I tried a new approach: Having used dexamethasone (Decadron) and undergone radiation therapy immediately after my diagnosis, I argued that this was my second line of treatment.
My insurance company blinked and agreed to pay for the Revlimid.
The appeals process was time consuming and stressful. But in the end, all of our hard work paid off. My insurance-related struggles were over, right?
Wrong! The good news was that Revlimid worked so well for me, my myeloma was almost gone in three short months.
At that point, I had a choice to make: Get my stem cells harvested, then continue taking Revlimid and dexamethasone, or proceed immediately to transplant.
I chose to harvest and then wait. That is, until Blue Cross/Blue Shield refused to pay for my “collect and store,” as it’s called.
How crazy! They would pay to collect my cells if I proceeded immediately to transplant, but not if I decided to wait.
Again we appealed. And once again, we won.
In retrospect, the hard work and stress was worth it. I believe I made the right decision, having delayed my stem cell transplant for over four years.
I share my insurance-related experience because I’m not sure newly diagnosed patients realize that their insurance company or the government (for those on Medicare/Medicaid or those in other countries with government-funded health care) could deny coverage of their treatment.
But as I illustrated above, it happens all of the time. And unlike my experience, appeals aren’t always won, and preferred therapy options aren’t always approved.
This is a big topic—much too large for me to cover in one column. But it is so important, I would like to spend the next week or two addressing these important questions: Is treatment for multiple myeloma a privilege or a right? Should private insurance or the government be able to deny certain types of treatment (stem cell transplants for the elderly or high-risk patients, for example), or should a patient be guaranteed the type of treatment that their doctor determines best?
You can bet I have strong opinions about this. Some of you may agree, and some of you may not.
But starting this discussion may help us grasp a better understanding of our options. Because after all, the goal here is to receive the best available anti-myeloma therapy—while making sure the bills get paid.
Until next week, feel good and keep smiling! Pat
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Related Articles:
- Northern Lights: My History With Myeloma And How Things Have Changed Since My Diagnosis
- Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
- My Myelomaverse: Feeling Dazed And Confused
- Northern Lights: An Update On My Treatment With Darzalex, Revlimid, And Dexamethasone
- Northern Lights: How My Husband Helps Me Deal With My Multiple Myeloma
This will be a fascinating discussion. Thanks, Pat. I agree with you that running through the gauntlet of insurance issues is, at times, even more stressful than the daily MM battle. I look forward to reading and participating in the dialogue. Hope that you are feeling like a million bucks- allusion intended! Sean
It seems our battle with insurance coverage share some common skirmishes. We must also be vigilant as to what course our treatment takes so that we can be sure our insurance covers it or what the co-pays are. I asked mt Transplant co-ordinator if my neopogen/Leukine shots were covered as part of the Hospital stay even though it was outpatient. I was not and I had to pay a co-pay for each shot. I also was not told that the DNA match testing on my siblings required a co-pay for each test. I have 7 brothers and sisters (and not one match umm go figure).
I look forward to the discussion.
In Remission. ASTC Recovery Day 186
Does anyone know if Revlimid is approved by Medicare and FDA for initial treatment for patients over 70? Thanks
Hello Bob,
Revlimid is not yet approved by the FDA as an initial treatment for multiple myeloma. This does not mean that it cannot be prescribed as a treatment for newly diagnosed myeloma patients. In the U.S., a physician may prescribe a drug for uses that are not FDA-approved. Whether or not your insurance company will cover the prescription, however, is another question.
To see if your Part D plan will cover Revlimid as an initial treatment for multiple myeloma, you can either call your plan's customer support group, or contact Celgene's Patient Support group. Their contact information is available here: http://www.revlimid.com/hcp/hcp-psc.aspx
Good luck!
From France your discussion shows that we are here very lucky. There is a state social security which cover 100% of the expenses given the fact that myeloma is a long term disease so there is no intervention from private insurance in this case. Whatever could be the treatment proposed by the doctors it is directly paid by the social security body. It is a great confort to know that you can be treated with the best options whithout struggling with a private insurance and with no cost for oneself. Cheers. Stéphane.
Pat: This is sure to generate a lot of discussion. How can anyone disagree with the premise that "someone", other than ourselves, should pay for treatment prescribed by our doctors? However let us remember as we enter this debate, that the US is the only place in the world where cost is not an issue (at least for us medicare types). Recently we have been reminded that we don't have the money to pay for everyone to get "free" treatment. Obamacare which takes over in a few years is pledged to handle the "bioethical" issue of deciding who will be be treated. Ideally,genetic tests will be used to decide who will be the lucky ones. As patients/caregivers this is where we need to place our efforts.
As usual I am focused on the quantitative versus qualitative issues. What do you expect from us engineering types. Glad to have you back in top form. Gary
Before this discussion gets sidetracked into a tangent full of criticisms of the U.S. healthcare system, let's all be clear about one thing. There is literally no country in the world where you would rather want to have cancer than the U.S.
A little known fact that is ignored by everyone who wants more government involvement in the U.S. healthcare system is that cancer cure rates and survival times are higher in the U.S. than in any other major industrialized country. This is true across the board, for just about any type of cancer, and has been demonstrated repeatedly in study after study.
Don't confuse the matter with general life expectancy statistics or infant mortality rates. They aren't relevant to this discussion about cancer.
In other industrialized countries, people rave about supposedly "free" healthcare. But, Stéphane, check sometime into how many newly diagnosed myeloma patients in France are being treated with aggressive combination treatments like Revlimid-Velcade-dexamethasone -- treatments that are rapidly becoming standard here in the U.S., and which are extending the lives of countless myeloma patients.
In the U.S., regardless of whether you have private insurance, Medicare, or Medicaid, you generally will have access to state-of-the-art cancer therapy, and your cancer will be treated more aggressively than just about any other country in the world.
Yes, you may have to fight some battles to get the coverage you really want. But the point is: you have the choice and the opportunity.
And the competitive, decentralized system in the U.S. means that treatment centers and oncology practices are constantly searching for better treatment approaches so that they can serve patients better and thus attract more business.
I think it's a pipedream to think that Obama's Healthcare plan isn't going to operate just like Medicare and other insurance companies, making the hard decisions like NHS in England, Canada and Europe. We will be denied care based on outcome vs costs and what doctors want to do will be less and less a factor. New drugs cost the most and their efficacy not yet always known, so it makes total sense that a doctor/patient want to try a $7,000/month NEW DRUG, while an insurance company would rather you use the tried and true for much much less.
Socialized medicine also denies by not approving new treatments and drugs shown to work in the US for as long as they can, and then the best thing they get is a country-wide price negotiation with the pharmas, which we in the USA also pay for.
I may not participate in all this Pat. It is always upsetting to me the one-sided-ness of these "rights and privileges" everyone believes are embedded somewhere in our Constitution and if shown to not be there, its a moral imperative that the Government, i.e., all of us, must address. I submit to you, that all of us would do a much better job of taking care of folks than the red tape and incompetence out of DC. There is an answer, but I have not seen it yet. Though I like thus far the New Zealand uninsured plan better than any I've seen, but since I don't know anyone from there, I don't know if its a total mess or not. Take your blood pressure medicine everyone!
Hugs!
TerryH. You are so right on. Let us only hope that we can afford this "luxury". When the "bean counters" in Washington begin to decide who gets the treatment and how much 2.5 months of life is worth we will join our fellow cancer patients across the globe. As Lori suggests we had better be ready to take care of ourselves.
TerryH and Lori: Yep.
Important topic Pat. You're right. When you're not worrying about your M-spike you're worrying about your coverage, particularly when you read about new drugs or treatments coming on board and wonder if you'll be able to take advantage of them. But it's definitely true that I too wouldn't want to have this (at all, of course) anywhere else in the world.
Once again, I made the mistake of checking comments several hours after my column was published. Lots of great opinions and feedback!
Please just try and remember I am not going to "bash" the U.S. healthcare system. For example, UK is much more restrictive (most of Europe is, actually) about which anti-myeloma therapies can be used, how they are used and when they are used. That said, please note Stephane's comment from France. She seems pretty happy with the options there. Everything can be improved, right?
I'm also glad you readers are starting to "talk" to each other and respond directly to each others opinions. But let's work to keep things as civil and as non-political as possible. I'm already working on my next two columns... This should be fun! Pat
Thank you Pat ! This was timely news for me as I will enter soon a clinical study and after 4 cycles I could/should get stemcells collected for a delayed transplant and I also have Blue Cross Blue Shield insurance. Also I would disagree with TerryH, US is great place to be for a cancer patient if one has an insurance (or Medicare). The others will be out of luck (particularly the working poor who dont qualify for Medicaid), and those with a hard luck of having pre-existing conditions like MGUS and SMM and loosing their job and trying to find a new employer, well, Obamacare would be of help. ( By the way, in US many would need the big government to buy the health insurance for them as unfortunately 60% of working people make less than $35K/year, and the statistic is even worse if one looks the average pay of 90% of working population making about $31K/year as of 2008.) Why everybody should purchase a health insurance, it is just like having a house insurance, because a fire can happen and burn your house and your dear belongings, well everything you own. Cancer can happen and kill you without enough money to pay for it. In both cases you loose everything (and in the latter case, your dear life sooner rather than later) if you dont have an insurance. Both cases represent is a shared risk. So the treatment for multiple myeloma is not a privilege or a right, but a shared risk that we purchase a health insurance for. That is of course if the insurance company CEO bonuses or stock option dont cut into my care.
Pat: I hope you don't think I am trying to bash the health care system. It is the best in the world. My only worry is that we don't have the political will to keep it. In fact politics is "everything" in this issue including the response by the providers. I don't think there is any way we can leave it out and have a meaningful dialog.
However, I'm all for civility.
Pat: This is it. I will let it go. Remember Pat you are a very special case. MM is an old person's disease. Over 75% of MM patients in the US rely on Medicare/Medicaid. They do a fantastic job and co-pays simply follow the lead of Medicare. Medicare is political. Let's not lose sight of this as we bash private profit driven insurance providers. I'm done.
In response to Gary. The peak age people are diagnosed for MM is 58 years. This is 7 years below the Medicare eligibility. So much for your old people's disease, these 7 years are critical years to manage under private insurance plans. Read my early response to TerryH.
Many with MM die during those 7 years. It is a pretty big burden to fight private insurance bureaucracy on top of trying to live with MM.
We are fortunate to have universal health coverage in Canada, although of course no system is perfect and patients do experience delays, especially in waiting for surgeries. Health care is always on the political agendas here. In my city of Calgary, we have an excellent cancer centre, and the treatments I received after my MM diagnosis .. induction chemo with Velcade, a SCT, and then maintenance chemo with low dose revlimid, were all very current treatments. Our oncologists here go to the same conferences that the other physicians from the U.S., the U.k. and France do. In fact, the international conference for myeloma was held in Paris France this year. My husband and I are confident that my treatments here are of the best possible. Prescription drug prices are an issue sometimes, since the Cancer Board or Blue Cross does not cover all treatments. That varies from individual to individual. And unfortunately not all cancer treatments are offered in all provinces. Health care remains in the jurisdiction of each province. In a recent poll, the most respected Canadian was held to be Tommie Douglas, who started our health care system back in the 1960's! The research that is being done in all of the developed countries is benefitting all of the MM patients, at least those who can get access to treatment. In that regard medicine is international.
Great topic, though stressful at times!
Gary: I'm not so sure that MM is considered, any longer, to be "an old person's disease" (although my hubby falls in that category). More and more, the people I've met online as well as in the oncologist's office are under the age of 65. This puts those people in the private sector of insurance (if they have coverage).
As long as my husband's chemo treatment was injections in the cancer center, there was no question of payment by Medicare and his Medicare Supplement. However when the treatment changed to Revlimid,taken at home, this switched him to his Medicare Part D Drug Plan and things changed. At first, there was a question as to whether or not his Drug Plan would approve the drug (even though this was not his first treatment). And, there was a question of cost. Private plans have co-pays, and so does Part D.....but when I was told our co-pay would be $2,000, each month I was thankful I didn't have heart problems! Luckily, there is a Chronic Disease Fund which, if one is approved (and we were), will pitch in and help with the cost.
His Drug Plan has a Board that consists of reps from Medicare, the FDA, and a group of doctors. They met and made the decision whether or not my husband would be approved for the Revlimid treatment. Their decision was based, solely, on facts on a piece of paper, and not on any personal knowledge. I'm assuming that somewhere in our future, whenever the Obama Healthcare Plan is in effect, we will face these same type of decision-makers regarding treatment, for everything.
But, as someone (above) said, I'd much rather be facing these issues here than anyplace else in the world. Again, great topic with dozens of different opinions ...... just as MM affects patients dozens of different ways.
We also have bc/bs and had it when my husband found out he had MM, We are a group of two, and get our insurance from our small family owned, (and now barely profitable), business. At the time (two years ago) we were paying $15,000 a year for in insurance, and had no deductibles. They paid for everything including the stem cell transplant. The following year the raised our cost of insurance to $30,000 a year for the two of us. We could not afford it, but took high deductibles and copays to bring the cost down to $18,000 a year, which with out of pocket probably is around $22,000. My husband it turning 65 next month, and I thought that would be a god send. Wrong.
My research says Revlimid is a tier 4 drug. That means most part D companies will not carry it. Those who do require between a 25% and 33% copay, not to mention the donut hole. I would have to have single, no group, higher cost health insurance. I am able to keep him in the group, and our drug coverage will cover his drug. I figure our health care cost, with medicare, and bc/bs, to be about the same as last year. He must go on Medicare. Medicare will pay first, and bc/bs will pay the remainder. (If we were a group of 20 or more it would be bs/bs first, and medicare secondary.
If my research is correct, what bothers me, is if the first insurance (in this case medicare) does not pay for a procedure according to their guidelines, (and bc/bs would have if they were first insurance), then neither one of them pays.
I am also disturbed, (again if my information is correct) medicare will only allow one stem cell transplant, and only if......(what stage, etc. etc). Since my husband has already had one, (bc/bs) and the doctors feel he would benefit from on in the future, will he be denied? It does not appear that medicare is financially friendly to MM.
I might have to get a job at Starbucks, if he needs another transplant. I understand they have good health insurance.
Love the dialogue--especially when our international readers get involved! I do want to address Sue's concern. Sue, sounds like you and your husband are prime candidates for co-pay assistance through LLS or Chronic Relief Fund. My guess is you would get most if not all of your drug co-pays paid, along with at least part of your insurance until then. Good luck- Pat
Wow, lots of opinions! Well I am 40 almost one year from my diagnosis. So far my insurance issues to cover treatment have been very minimal. But my employer has said they will not have a position for me any longer and now I will be going over to my wife's bc/bs plan. I am dreading arranging moving my doctors and treatments over to a new plan. On a another note, I have an uncle getting cancer care in the UK. He has had to wait 6 weeks to have a CAT scan reviewed with his doctor. So not maybe we all agree not countries health plan is going to be perfect.
Denis-
I'm afraid health care and cancer treatment is a lot like most other things in life: Not black or white, but various shades of grey. Sorry for the administrative hassle of switching your care. But as some might chime-in, at least you can get it! I'm glad that is the case for you- Pat
Pat, et el,
The Patient Advocate Foundation (PAF) is another non-profit organization that provides co-pay assistance along with other patient support that assist patient access to care, employment and preservation of financial stability relative to their diagnosis.
I ‘am looking forward to reading and participating in dialog on this subject. My belief is that the goal should be more treatment for all but never at the expense of limiting treatment to anyone. This is going to be a colossal challenge given the financially constrained environment that the U.S., Europe, and the world is now experiencing. I also believe this challenge can be met if all involved parties; politicians, heath care industry (including pharmaceutical, insurance, profit and non-profit), and patients, remain realistic in their expectations and actions. I hope that in the U.S., that the 85% of us that are satisfied with our level of health care (I believe us MM patients level of satisfaction with health care is roughly equivalent to this stat) increases not by reducing any of this 85% (real people) to add any of the other 15% (also real people), but by finding the means to reduce the remaining 15%, hopefully sooner than later. I believe it's immoral to do otherwise.
Thank you for the helpful suggestion, Paul. Hard to argue with any of your thoughts... Pat
One thing that hasn't been touched on in this discussion, yet which I suspect will end up becoming increasingly important over time, is the prices charged by the pharma companies for some of these treatments we need. At some point, I suspect there will have to be a rationalization of cost/selling price, as I strongly suspect people are dying because they cannot afford treatments at $1K per dose or whatever.
I would also like to offer the incidental comment that, in Ontario, I have received superb care via OHIP and that a great deal of the pharma burden was picked up by the Trillium Plan, a provincial needs-based funding system for pharmaceuticals not administered within the hospital. We certainly do not have a 'wide open' funding plan (eg, thalidomide isn't yet covered), but even then there were options.
As to insurance: we have to fight almost every month with our disability ins. provider for that month's cheque. Tedious, for sure.
Thanks, Pat, for bringing this to the table.
I am a female who has work outside the home 40 years, raised the my family and took care of household chores. my husband worked too but died soon after retiring and not long after my Myeloma diagnosis. I started paying into Meficare when it first started in 1965. Because of my salary I have always paid the maximum into Medicare I will not have access to medicare until 2012. The company I work for also paid into Medicare the same amount I paid into it. Baby boomers are just now become eligible for Medicare.
My mother died recently and was eligible for Medicare. She worked most of her life and contributing what she could to medicare when working at the lower wage jobs that some women, in fact a lot of women typically are able to find.
I am happy that I was able to help my mother and all those other low income women when all they had was Medicare. This is all just a political discussion. ObamaCare. RyanCare. Who Cares? Those of us with Multiple Myeloma patients are just struggling to survive. Some of us are older or younger. It seems the disease has no unique calling card. There are a lot of health care debate web sites out there, but it is a much bigger debate than Myeloma. Myeloma patients are only a small fraction of people with health care issues in the US. Anyway, did not mean to go on.
Pat: I know your plan, at least I think, is to write a book, but please don't use any of my information
Thanks.
Of course not, Sandy. The book is going to be about different types of stem cell transplants from a patient's perspective. No politics, promise! And I agree--all we are all trying to do is get by the best we can... Pat
Thank you Sandy...I share your views. You said a lot very well. Lots of healthcare debate sites.
The partisanship is a real brain drainer...too polarizing and non-productive.
No one who is dying should even have to read the callousness of some of the partsian/political views.
Just is beyond rude.
Politics is a contest/struggle for power, nothing more.
The only power available to patients is the will to live and the will to choose to do so happily and with the full expectation of God's grace, as God's Will, will not take you where his grace cannot keep you.
He is omniscience, omnipotent and omnipresence.
If only folks understood that we are not human beings having a spiritual experience on earth...rather we are all spiritual beings having a human experience here on earth.
Thanks again Sandy for your commentary.
Thanks, Suzie. Spirituality is a lot more important than politics!
Appreciate so much your feedback, Suzierose.
Hi my name is Melissa;my father Ernie Ortega was diagnosed with Multiple Myeloma in October 2011. We are now March 6, 2012. He is insured through a local insurance agency called "Presbyterian". Last month he was give the "golden certificate" to receive treatment at the Mayo Clinic in Scottsdale AZ. After a short trip for blood work and initial consultation, my dads insurance company and the Mayo clinic have denied him treatment in AZ. The Mayo clinic says it is due to his insurance. 500,000. would not cover the "follow up care" and Rx. needed for the Stem cell transplant. I spoke with his "Case worker" at Mayo who told me to find a supplemental insurance. My dads health has dropped. His internal organs are shutting down due to the aggressive Chemo treatment prescribed to him to begin the transplant process. I don't know what to do where to go....My fathers life is being decided upon by his insurance company. Can anyone offer me help?
Melissa-
Since this is an older column, I'm not sure how many readers will see this. Anyone have any suggestions? If this gentleman's organs are "shutting down," could he proceed to transplant anyway right now? How scary! So sorry you, your father and family are going through this...
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page