Sean’s Burgundy Thread: Are You Listening?
File this one away in the ‘I Don't Think They Love Me Anymore’ drawer. Here’s how a recent phone call went:
“Thank you, Mr. Murray. I will be sure to mark this request urgent. Is there anything else that I may do for you?”
“Yes, there is, actually – and thanks for asking. According to my notes, there have been one, two, three, let’s see, at least six people who have told me that they’ve marked my request urgent and yet, after three months, my problem still isn’t fixed. I am beginning to suspect that you all neither listen to me, nor do you care in the slightest about helping me with this issue. No offense intended.”
Yikes! Although I was using my ‘indoor voice,’ as my elementary school teacher wife would call it, the poor person to whom I was politely giving both barrels had no trouble sensing my unmistakable frustration.
She was an exceedingly courteous and cheerful customer service representative for the ‘specialty pharmacy’ through which I receive my monthly supply of Revlimid (lenalidomide), a drug used to combat multiple myeloma.
Revlimid, or Rev as we cool cats who hang around the myeloma water cooler like to call it, is one of the main drugs I’m using – along with Velcade (bortezomib) and dexamethasone (Decadron) – in my three year myeloma maintenance regimen. Truth be told, I also call it Rev because saying lenalidomide makes me sound pretentious, and nobody likes a pretentious myeloma patient. That and the fact that I have to repeat it two or three times because I can never remember how the heck to pronounce lenalidomide.
Because of Revlimid’s potentially significant toxicities, it can only be prescribed by physicians and dispensed by pharmacies that have been approved as participants in Celgene Corporation’s RevAssist Program.
In other words, you can’t stop in at Jim Bob’s Drugstore and Smoke Shoppe, conveniently located on Main St. next to the High-Watt Tanning Studio and Leather Outlet, to pick up some Revlimid. You have to go through a specialty pharmacy.
My health insurance company contracts with one of the thirty or so specialty pharmacies registered as of February 2012 in the RevAssist Network. In my three years of taking Rev, my insurance company has mandated which pharmacy I needed to use.
For those of you who haven’t gone through a specialty pharmacy to obtain such a highly restricted drug such as Revlimid, the process is rather straightforward:
First – get myeloma. Check!
Second – engage a doctor who is registered and approved to write a prescription for Revlimid. Check!
Third – figure out how you are going to pay for it. Gulp… Check!
Fourth – when the specialty pharmacy receives the prescription from your doctor, you contact them (or if they’re on the ball, they’ll contact you) to arrange delivery via a service such as UPS or FedEx. Check!
Fifth – one of their staff pharmacists reminds you not to donate blood or sperm, not to engage in unprotected sexual relations with a partner that ‘still has her womb,’ and not to share capsules with anyone. Check!
Sixth – you call the automated Celgene Revlimid Survey phone number and ensure them that you are using Revlimid safely and as directed. Check!
Seventh – you wait for the delivery person to bring the Revlimid sometime between 8 a.m. and 8 p.m. Check!
In all seriousness, Revlimid has many serious side effects and should only be used as intended.
“Mr. Murray, rest assured that I will see to it that attention is paid to your request and that it gets in the right hands.”
”Thank you! But what I’d like to do today, if you don’t mind, is to speak to the head of your department, the highest ranking person in the office on site. No reflection on you at all. I’ve enjoyed chatting with you. I’ve enjoyed chatting with more than a dozen of you very nice folks over the last three months regarding my issue. But today I need to speak with someone who will be accountable to finally helping me get what I’ve been requesting. Did I mention that I have an incurable form of cancer and time is of the essence?” Oh, yes, I did play the cancer card!
The good news is that my issue had nothing to do with getting my Revlimid prescription filled and delivered. Although each of the three specialty pharmacies that my insurance company has mandated that I use through the years have had different operating procedures, the Rev has always shown up on my doorstep when I needed it.
So what is my problem? I have a cancer insurance policy (not associated with my health insurance) that pays me directly for chemotherapy medications like Velcade and Revlimid, various cancer-related procedures, travel, hospital confinements, and more.
They pay, that is, when I submit the proper paperwork. As an example, my infusion center provides me with the documents detailing the Velcade information I need to satisfy my insurance company claim.
My first two specialty pharmacies had no problems immediately providing me with the Revlimid documentation. My difficulty with this third specialty pharmacy was that they seemed not to be at all motivated to help me.
I began receiving Revlimid through Pharmacy #3 in January of this year and after several requests and being sent the incorrect information twice, they finally put what I needed in my hot little hands. I sent the info to the insurance company, and they quickly sent me the payments.
Great! It was a hassle, but now the pharmacy knows what my insurance company requires. All is good, right? Wrong!
As I began writing this column, I still hadn’t received the paperwork I needed for February’s Rev order, or for March’s, or April’s Rev order. In trying to get the right documents sent, I have talked with nearly a dozen people at the specialty pharmacy, including customer service reps, billing department staffers, and department supervisors.
One supervisor read me the form he was sending. I stated that it was exactly what I needed, send it on. Ten days later, I received the same incorrect form that I had been sent several times previously. Another supervisor said that she would be happy to handle my problem and would call me as soon as the paperwork was prepared. Let’s just say that I’m glad that I didn’t wait by the phone – she never called and I, once again, received the paperwork that I knew my insurance company would not accept.
Who needs dexamethasone to ruin your day? Just use a service provider that seems to conspiratorially take pleasure in your misery.
Thus, here I was telling the nice lady on the phone, “I need to speak with a manager or whoever is the highest ranking person in your office to get this thing settled.” When they finally tracked down the manager, she was apologetic like they had all been. Here we go again, I thought to myself.
However, this department manager took the bull by the horns, got an account manager on the phone with us, and asked that I once again explain my situation. She assured me that the matter would be taken care of and asked me to call her directly if it wasn’t handled to my satisfaction. Though I’ve learned to live with hope through my precarious myeloma journey, dare I dream that the specialty pharmacy was going to come through?
And don’t you know, just as I was putting the finishing touches on this column, my postman dropped off the documents I needed to submit for my cancer policy. The correct documents. I think that I may have even kissed them.
I don’t have a single clue as to why this large specialty pharmacy couldn’t help me sooner with what I view was a very simple request. Maybe it’s a process problem. Maybe it’s a people problem. I don’t know. While they have handled the Revlimid fulfillment and deliveries beautifully, they have delivered as poor a customer service experience that I’ve ever been subjected to.
Nobody’s perfect, I suppose. All I can say is that someone either finally got tired of hearing me complain, or perhaps they cared enough about me to help solve my problem. Or maybe a birdie told them that I was writing a column about just how much I have enjoyed working with their company.
In any event, the overarching lesson that I have learned in this situation is that I should never give up. While there will be times in my ongoing struggles with myeloma and life in general, I don’t have to kowtow to the lunacy that sometimes abounds. If an issue is important to me, I have to stick to my guns and stick up for myself. There is no shame in asking for help and no dishonor in demanding that I be heard.
Sean Murray 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
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Hey Sean,
I have a question about the 'cancer insurance policy'. I'm not familiar with that type of insurance and would like some info. Are they expensive? What kind of coverage do you get? Any info to start my investigation of this would be helpful! Thanks.
Jesse
My husband and I had just signed up for Aflac ins. 1 month prior to my diagnosis. We chose the accident policy only and declined the cancer policy, after all we are young. They would have sent me a $10,000 check upon my diagnosis. Missed that boat, who would have thought? Now we are stuck with the double whammy, cancer and mounting medical bills, doesn't seem fair.
HI Sean, We have a different system in Canada and I was issued my Revlimid prescription from the pharmacy at the Cancer Ctr. One thing that was important was that one's blood levels had to be healthy enough for it to be prescribed. I do remember it being postponed at times for a week until I was well enough , when my neutrophils were at too low of a level. Do you have that safeguard also, of reporting your blood test results? Just curious! The pharmacists would thoroughly quiz me on all manner of side effects, etc. also.
But what it shows me is that handling that amount of paperwork for your own meds is really proof that you don't have much in the way of 'chemo brain', that's for sure! Sounds like a complicated procedure to keep track of! Hope all is going well with you and your family, as you wend your way through these treatments.
I've found that the Celgene Patient Support people can be very helpful in similar matters. I don't use them as a first resort, but when I put a problem in their hands and just walk away, it generally gets solved expeditiously.
Oh the stories we can all tell! Had a similar problem with my mom who had disability insurance for her cancer, but was getting treated at a top of the line military facility that doesn't submit insurance forms. Every 6 months they would stop her checks because they couldn't get documentation. They continually would use her SS# and be told no one there like that, when she was under my father's SS# as a dependent. One helpful person on the phone asked her when she would be cured and go back to work. Which of course had nothing to do with what she was supposed to be handling. Anyway, after my sobbing mother called me, hardly coherent, I did as you did, went up the line, "No, thank you, not interested in having this conversation with you." As the stalemate in the process was presented like a couple of lawyers, each presenting their side of the situation, needs and wants, I came up with a suggestion of a manual, hand carrying of documents to be signed off every six months instead of electronic. YES!!! Victory was at hand. But oh what my poor mother had to go through.
Be happy you aren't a female of childbearing age...then you could add a pregancy test to your extensive list of requirements to get revlimid each month.
Nancy- I've been receiving my Revlimid from Celgene as part of one of their clinical trials for the past 4 years. They require blood tests before each month's issuance of pills. My prescription has also been stopped a couple times due to low white blood cell counts. This seems to be US policy.....
Isn't Celgene fun--just had my own go round with them this month. How many times do they need to be told I am in my sixties, had a tubal ligation and it is absolutely impossible for me to become pregnant? Every other month I guess. i think it is overkill to overcharge. I had to stop taking Revlimid due to low platelet counts which would have led to constant blood transfusions. Now taking Thalidomide and already had the dosage reduced as I can tell it is causing more neuropathy. Talk about between a rock and a hard place-- live but lose feeling in your extremities. I am glad that there are now guidelines regarding the drugs and neuropathy. That will make things clearer. You are lucky you had special insurance for cancer. There are no medicare prescription plans that cover our drugs--and the donut hole is not closed and 30% of $7,000
the bargain you get after shelling out for the donut hole is yours to pay. Hardly a bargain. This is not a cheap disease for the insurance companies or the insured in the USA.
Hi Again! Sorry, of course since Revlimid originates in the US, the same restrictions on it would be in both our countries. Have you ever heard of those rare cases where women in their sixties have babies by IV methods? The whole pregnancy is supported by hormones supplied by medical science.....it has happened and I suppose that might be a reason why everyone is asked about their fertility.
All of you struggling with drug copay problems or insurance premiums need to contact the Leukemia & Lymphoma Society to enter their copay assistance program. They will cover up to $10K in expenses for insurance premiums, doctors, and drugs. You do not have to be real low income to qualify. Also the Chronic Disease Fund can help on drug expenses.
One of the MM people told me about it in a column. It has been great! Please check into these great programs.
Thanks for your comments everyone!
@ Jesse White: My cancer policy is with National Teacher's Association Life Insurance Co. and is through my wife's employment. Completely separate from our health insurance, our yearly family cancer policy premium is less than $250 a year and has paid us many multiples of that figure. There are many plans out there; talk with your health insurance provider to see if they have one, or use a search engine to see the multitude of policies available. I know that AFLAC offers these policies. I understand that every plan is different and covers different things. Unfortunately it is difficult to get enrolled in one post diagnosis, but look to see what might be out there. Best wishes to you.
@ Christine: I am so sorry, first of all, that MM has come to you, and secondly, that the insurance situation didn't work out better. MM is such an expensive cancer to fight and no, it isn't at all fair. It seems that the fears of the financial issues involved in the MM battle are sometimes as stressful as is the disease itself. Keep looking for help in the financial arena that you might qualify for. I'm not an expert and don't have great advice, but someone out there does. Scour every resource you have at hand. The IMF, your current health insurance provider, or individual drug providers, as Stan shares in his comment above, among others. Look at the Beacon archive or pose a question in the Beacon's Forum. Stay strong, Christine, we will be keeping you in our thoughts and prayers.
@ nancy shamanna: Thank you, Nancy, for your kind wishes. And thanks for the education about the Canadian system. I'm in a maintenance phase of treatment so I get weekly blood tests (CMP,CBC, liver function, etc.), but nobody has asked for confirmation of my counts as far as Rev is concerned. I do have to meet certain criterion for my weekly Velcade infusion to be green lighted. ANC (absolute neutrophil counts x WBC x 100), platelets, WBCs and a couple of others.
Nancy, I'm not sure that I could have handled (in more ways than one!) this kind of skirmish when I was undergoing induction, tandem stem cell transplants, and such, but I am so happy to not have this on my wonderful wife's plate. Warm wishes to you and yours, friend to the north!
@ Stan: Thank you Stan for your wise suggestion! The CPS folks are great; I didn't feel that I was quite there yet to call on them - close though! Celgene wants happy, satisfied clients. They probably wouldn't want to hear bad stories about approved RevAssist pharmacies, I guess. I'm a patient at UAMS, where I imagine a good deal of Revlimid is prescribed and my health insurance company (which mandated that I use Pharmacy X, is one of the big boys. As I stated, the money I was to receive, wasn't coming out of Pharmacy X's pockets - not sure why they have made this so difficult. I feel fortunate that my Revlimid arrives on time! Thanks a million, Stan.
@ Lori: Hello my friend and as I would have suspected, most dutiful daughter and caregiver to your mom. Which service branch was your family? My dad was career Air Force. Military procedures are sometimes beyond curious, true? I had some practice as a caregiver with my parents, as well, but it didn't prepare me for playing the role of patient. Oh well, water under the bridge. Hang tough, keep up the terrific blog and FB presence, and the excellent care to your Dave. We WILL run into each other again someday!
@ Kris Grandinetti: Kris! Guess what? My first providing specialty pharmacy did ask for the pregnancy test results a couple of times, before they would send me the first blister pack of Revlimid. I ended up sending them my picture - we had a big laugh! My pre-chemo full beard told them that I was male or perhaps that I was a circus side show act. I would have thought the part on my record that said '49 year old MALE' would have given them a clue. Thanks for making me laugh, and you're right, I'm glad that I don't have to prove that I'm not pregnant every month. Thanks for the laughs! Be well!
@ John Williamson: Thank you for sharing this info, John. All my best.
@ Shirley Pike: Thanks, Shirley, for sharing your story. I do, indeed, know that I am fortunate in the scheme of things. I'm very sorry to hear of your issues with blood counts and PN. Thalidomide caused DVTs and pulmonary embolisms (emboli?) between my stem cell transplants. Switched to Rev for maintenance. PN has also been an issue, though much less so than your case. I pray that you get a break, you deserve it. I'm 53 years old, describe myself as independent from wealth, not independently wealthy and have started looking at Medicare and its complexities for my future. Sheeesh! I will be thinking about you, Shirley.
@ Nancy D: I wholeheartedly agree with you and thank you for info about the LLS's program and the Chronic Disease Fund. Thanks for spreading the word. Be well!
Air Force. He was one of the original SR (Blackbird) pilots in the 60's and my hero.
It was funny how I had to talk my Mom into Bethesda and finally she admitted, "But their NAVY!" Sheesh!
Hi Sean, great article, I was curious if you got your cancer insurance policy pre diagnosis ? I'm assuming it must be difficult after?
My husband does have great insurance, but when he retires who knows what we will do. Thats still a ways off but I do think about it .
@ Christina: Hi. Yes, we had the policy before there was a cancer diagnosis. And yes, I understand that it is quite difficult to get this kind of coverage post diagnosis, as you might imagine. As I am in no way an expert in all-things insurance, I would encourage you to talk with your current health care provider to see if they underwrite an attractive plan for you or if they have a recommendation. Check with AFLAC or do an internet search - there are options out there with many different plan descriptions. Our policy's premiums are less than $250 a year for our family of 4, and it has paid back in the low six figures over the last three years. With risk statistics like one in two men will get cancer and one in three women, I would encourage anyone to take a look to see if there's an affordable option for you. We are fortunate to have such coverage within the unfortunate situation of having myeloma. I certainly wish the very best for you and your husband, Christina.
Hey, Lori. One of my good friends, Lt. Col Bill Groninger (USAF ret), has his Habu patch. I'm proud of him and guys like your dad. What tremendous men, those Blackbird pilots and support teams. Lori, you're cut from most excellent cloth! I wish there was a way for us to soar above MM!
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