Arnie’s Rebounding World: The Health Insurance Dilemma
When I stopped working due to my multiple myeloma, my biggest concern was how I was going to maintain my health insurance.
Through a deal I negotiated with my partners, I was able to stay on our group health plan for a while. When my former group merged with a larger group, this option was no longer available. Since the group plan was being dissolved, COBRA insurance was also not available.
After much anxiety and research, I discovered that since coverage was continuous and COBRA insurance was not available, I was eligible for something called an Individual Conversion Plan through the same insurance company.
I have to say, the coverage has been very good. While the plan is not cheap and has a high deductible and high out-of-pocket maximum, it has covered me through an autologous stem cell transplant (using my own stem cells), an allogeneic transplant (using stem cells from a donor), and some pretty out-of-the-box drug regimens including Velcade (bortezomib), Revlimid (lenalidomide), and Zolinza (vorinostat) together at one time without a hitch.
Because of disability, I became eligible for Medicare as of January 1. I had always felt that once I became eligible for Medicare, my health insurance concerns would pretty much be over. I would switch to Medicare, reduce some of my health care costs, and be covered for life. I jumped at the chance.
Then I read an article in the New York Times, which seemed to be making the rounds in the myeloma world. The article, “A Health Insurance Detective Story,” was written by Frank Lalli, a former editor at Money magazine and multiple myeloma patient.
The gist of the article was that his supplemental Medicare plan was changing, and he was trying to find out how much his Revlimid was going to cost under the new plan. As a trained reporter and financial expert, 70 phone calls later, he was unable to get a firm answer. He got answers ranging from $20 per month to $17,000 per year.
Hum, maybe it wasn’t as simple as I thought. Maybe I hadn’t asked enough of the right questions. Was switching to Medicare really the best option? To me, this came down to three questions.
The first question was: Could I really stay put with the plan that I was on without being forced off by becoming eligible for Medicare? This was unclear to me.
According to the Florida Statute regarding Individual Conversion Plans, Medicare eligibility may allow for a reduction in coverage. Like Frank Lalli, after multiple phone calls to my insurance company, Medicare, and Social Security, I was told by the State Insurance Commissioners Office that the key word was “may.” This was a contractual issue with the individual companies.
Again, after several calls to my insurance company asking the question as many different ways as I could, I seemed to be getting the answer that yes, I could just decline Medicare and stay on the current plan until age 65, even though I was eligible for Medicare now through disability. According to Medicare, there would likely be a penalty of 10 percent of the premium per year if I decided to go on it later.
The second question was cost. Which option was more cost effective for me? Again, this was not simple.
The premiums for the two plans were actually pretty close in cost after including the Medicare supplement and Medicare Part D drug supplement.
Under my current plan, after my deductible and out of pocket maximum of $6,000 is reached, everything is covered at 100 percent and my drugs are all covered with small copays, including high-priced drugs like Revlimid.
For the Medicare plan with the supplement, everything is pretty much covered at 100 percent from the first dollar except the drugs. This is where it got sticky. I went on the web site for the Part D supplemental plan, and they actually had a drug cost estimator. I plugged in the current medications that I am on, including the immunosuppressive drugs I have been using since my donor transplant. The out-of-pocket cost could be somewhere between $4,700 and $7,200 depending on the plan option. Just for fun I added Revlimid, which I am not currently on, to the list. The cost jumped to over $10,000.
So maybe Medicare was not going to turn out to be cheaper, especially if I ended up back on a high-priced oral medication.
The third, and to me the most important, question was which one would provide the best coverage for my needs with the least hassle. This is really complicated because so many things are unknown. What treatment will I need in the future? How will they be covered?
I started with what I did know. My current plan has covered me with minimal hassle through auto transplants, allo transplants, multiple chemo drug regimens that included oral and intravenous drugs and now even Kyprolis (carfilzomib).
I started to research Medicare coverage for multiple myeloma and was surprised by some of what I found. Many of you may already have known this, but I did not realize that Medicare will only cover one stem cell transplant. Medicare does not cover stem cell storage. And here is a big one for me: Medicare does not cover donor transplants for multiple myeloma. So many of the treatments I have had to this point without much trouble from my insurance would have been a big issue with Medicare.
It is difficult to know what impact Obamacare will have on private health insurance. We do know that Medicare is driven by politics and economics. While no one knows what will happen with the politics, the economics would dictate that Medicare coverage is not likely to get better over time.
So for me right now, after much hand wringing, I decided to stay with the devil I know, the plan that I am on, rather than switching to Medicare. I can always switch to Medicare later with a penalty, but I can’t go the other way. I hope my private insurance doesn’t come back to bite me.
I would love to hear other readers’ experiences with the two options.
Arnold Goodman is a multiple myeloma patient and columnist at The Myeloma Beacon.
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Arnold - This is a great article. I am much younger than 65 and on disability. My employer allowed me to stay with my group insurance company. My premiums and deductibles are astronomical. However, the insurance company covered most of my extremely high medical expenses. I also decided to bite the bullet and to stay with the private insurance instead of going on medicare. Well, the problem is that the insurance company will not let you. They require you to apply for medicare. Medicare will become your primary coverage and the insurance company will be supplemental. If you don't apply for medicare, the insurance company can drop you and also request that you reimburse them for the money that they paid out while you were eligible to be covered by medicare. As a matter of fact, once a year I receive a questionnaire from the insurance company asking me if I applied or am I covered by medicare. I don't know if the rules are different in different states or with different insurance companies.
I did read the NY Times article by Frank Lalli. This whole things is so confusing. Different experts will give you different answers. Its hard to make such important decisions without knowing all the facts.
Mike
I have a couple of places for you to turn. I also am younger than 65 but have been on medicare for a year. In addition, I have a supplemental plan through United Health care and a drug plan through Blue Cross. For the high premimums, I have the Leukemia society co-pay plan to help me out. For the donut hole in the Part D plan, I have the Chronic Disease fund helping me out. You might check out these 2 sources for assistance.
Arnold, at the end of 2012 I faced the same issue and made the same decision you made: stay with my current BCBSFL PPO and take Medicare Part A. I can not decline Medicare Part A because I have been on SSD for two years.
I too read Frank Lalli's article so I know his (and your) pain.
Thank you so much for this very informative column. I am well covered under my husband's PPO at this time, but we are starting to try and figure out what will happen with his employer's insurance/Medicare when he retires in just a few years. I have printed your article as a foundation for our research. Thanks again!!
Once again I am reminded what a blessing it is for me to be living here in Ontario, Canada, where the state-run system has been perfect for me.
The one big downside may end up being the lack of choice I have in my treatment options, but so far, it has gone very well indeed.
The other advantage, of course, is that I have no stressful decisions to make in this regard... we don't have options as regards coverage the way you do in the States.
Hey Arnie, that article made a lot of people realize the decisions they will have to make in the future. Great Job!!
I am on SSD, as well, and on Medicare, but I don't use medicare because I am a veteran and the VA covers everything for me including, Velcade, Dex, Revlimid, Radiation and a ASCT I had 1 year ago. I am very knowledgeable about MM and the VA has given me top notch treatment. If you are a veteran, than that iss the way to go. If not not, it appears you made the only practical decision. Good Luck and God Bless
I'm glad someone is addressing this problem. My husband decided to stay on private insurance although he is eligible for medicare, because we could not figure out exactly what medicare will cover. He's currently on disability but when he turns 65 will he have to go on medicare? Did you research any good medicare plans? I can't believe this isn't a bigger topic given that myeloma has become such an expensive illness to treat and it effects so may people at an age that they are going on or will soon go on medicare.
Is Medicare a national program? It should have definite rules and regulations attached to it, which would be accessible to patients, nest-ce pas? Perhaps since it is a major issue, the IMF or other myeloma patient support group could look into this and publish guidelines.
The American system seems very complicated to us here in Canada, but from what I read, patients manage to negotiate themselves through it usually. Hope you can get some clear answers to these questions, Arnie.
Thanks for the great comments. Our system is complex, fragmented, daunting and down right scary. We are forced to make decisions based on information which is often obscure or unavailable. The rules vary by state, insurance company and plan type. yes Medicare is a national program with published guidelines but at at the state level it is often administered by a private company. In Florida Medicare is administered by Blue Cross Blue Sheild which sets some of its own rules Rules can also vary by the type of Medicare plan such as Medicare Advantage Plans (Medicare HMO's) As with Mike I was concerned that my plan would require that I go with Medicare, but as best I could tell that was not the case with my particular plan. I am still not 100% certain but acted the best information that I could get. It is interesting how many different ways people have had to attack this problem. I am also fascinated by the Canadians response. There does seem to be no question there is less complexity and stress in the Canadian and British systems and seem to do well with standard care. My concern is what happens when non standard care or some out of the box treatment is required. There are several instances where this has been the case for me. I fear that under those systems some of those options where I pushed for non standard treatment would not have been available to me and that I might not be around today, not sure.
I think that you have had excellent health care, Arnie, and am wishing you all the best! Your columns are always very informative. Thanks for explaining about the regional nature of Medicare. It is confusing to someone not in your health care system. Maybe with the help of the media spotlight upon the issue, and with the help of such well informed patients as yourself, myeloma patients will continue to get really good care even after going on disability or turning 65.
We have excellent health care too, IMHO, but sometimes when a drug is not approved here yet or there is some other problem with accessibility, the doctors must feel that their hands are tied.
Just over the last few years, I have heard a lot about patients and gradually realized that myeloma is a very scaRY disease, that doesn't always 'go away' after a remission.
The irony of it is, to me, that when I grouse about drug approvals in general, people always point out to me that thalidomide was approved too hastily bACK IN The 1960's (not in the US though). They couldn't realize that part of my treatments included a derivative of thalidomide, revlimid. The Canadian system tends towards caution.
" My concern is what happens when non standard care or some out of the box treatment is required. There are several instances where this has been the case for me. I fear that under those systems some of those options where I pushed for non standard treatment would not have been available to me and that I might not be around today, not sure."
That is exactly right, Arnie... it's a pretty programmed box we operate in, and quite inflexible. Definitely not "bleeding edge" when it comes to pharmaceuticals or treatments, nor particularly willing to change up even within the confines of the box.
So yes, our system is less flexible than yours and some fall through the cracks. When that happens, a lot of us go to the States for treatment, and go broke in the process begging our respective jurisdictions to fund our alternatives.
I am not on diabilty but will be retireing in oct 2013 any advise to what i schould do about ins. also my wife doesnt work and i have her under my plan at work what happens to her when i retire thanks
Chuck, that is actually a complicated question. How old will you be when you retire? Will you be 65? If so your best bet would be Medicare. If not COBRA might be an option. How old will your wife be? Does she have any other medical problems? How big is the company you work for or are you self employed. I would need more info to know all the options. But be careful, it can be very tricky. When Obamacare goes into full effect in 2014 that actually may make things easier for you.
Thanks for the article- always good to read an article that makes you think. My husband has been on disability for a year now and, although our employer (my husband and I work for the same company) had not indicated they might take his health coverage away, we decided it was safer for me to increase my hours from 20 to 30 hours so I would be able to carry the insurance for our family. Better to do it when we could overlap the coverages to make sure nothing fell through the cracks. We are now switched over with only one hiccup (easily remedied), so I am very thankful for that. Hopefully we can stay with this coverage for as long as we need to.
I turned 65 in August and was laid off Dec. 3. I had returned to work after chemo and ASCT and take Revlimid orally as maintenance. I had excellent insurance coverage and was able to take COBRA. It's well worth the cost because of the drug coverage - $50 co-pay - and because my wife and son are still covered by the plan. That will change in July, and I can cut back to individual premium, which will save a lot. I intend to keep COBRA to the 18-month limit.
On Medicare, I have Part A and will pick up Part B when it makes financial sense to do so. Hopefully, I will not need Part D until COBRA ends.
I looked into Medicare coverage and here's an oddity that I hope is changed; if you get maintenance meds by infusion or injection at the hospital, it may be covered, but if it's taken orally at home it's not. The distinction makes no sense and it's something I hope to help get changed.
Arnie, wouldn't a high-end Medicare supplemental plan cover most of the drug costs? I declined Medicare once I became eligible, too. One of the reasons was the one transplant issue and no donor transplants. Thanks for pointing that out!
Pat , a high end part B supplement will cover all of the iv infusion drugs. The problem is the high end oral medications like Revlimid and soon to be Pomalidimide. These fall under part D oral medications. Even with a good part D supplement once you are out of the doughnut hole and a $4700 out of pocket max is reached you fall into catastrophic coverage which still requires a 5% copay on tier 5 drugs which for Revlimid can run around $10,000/year, at least with the best United/AARP part D supplement I could find. As Ron points out above it does not seem right that Iv chemo is covered differently than oral chemo. Some states have passed laws mandating the oral drugs like Revlimid be treated the same as IV drugs like Velcade, Florida is not one of those states. I am wondering how others have dealt with this issue
Very interesting discussion. Let me tell you, how insurance issues are here in Germany where I am writing you from.
Health insurance for my husband and me together costs 330 Euros (about 420 US-$) a month. Our of pocket maximum is 400 Euros a year. When that amount is reached, we pay nothing more.
It includes all costs, regardless how many transplants or expensive drugs like Revlimid or Velcade one needs. And we can go to the doctor or clinic we choose.
And this is almost the same for all German citizen. If the family income is lower, you pay less.
Kindest Regards,
Elfriede
Berlin/Germany
Insurance is confusing. I have worked in Medical Billing until I retired in 2011. I am 69 years old. I chose traditional Medicare and the high option AARP medicare supplement. Cost and coverage is not the only issue. I live in a Dallas suburb. The physicians here do not accept Medicare HMO patients. One very large acute care hospital system {10 hospitals} will not accept Medicare HMO patients. Both my oncologist and cardiologist accept only traditional Medicare with a supplement. It is hard to find an internist or Family Practice physician that will see any Medicare patients at all. "we currently have our alloted number of Medicare patients ? }
I received a 100% copay grant from the Leukemia Society for Revlimid and the drug company called and offered to sponsor my copay for Kyprolis. I think that there are a lot of resources for help with copays. Eligibility is based on income and does not include assets. Income requirements are generous, $50,000 for Rev-$100,000 for Kyprolis. Certainly worth investigating. Keep it going!
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