Fighting Big Pharma in Kaua'i

My battle with Bristol Myers Squibb

Setting the Stage

I’ve been living with multiple myeloma, an incurable cancer of the bone marrow, for fifteen years. Many patients often suffer from skeletal fractures and other debilitating symptoms, but my form of the disease has spared me those occurrences. However, like most who have myeloma, I am immuno-compromised. Low hemoglobin, low red blood cells, low white blood cells, low platelets.

There are many drugs that can help control the disease. Mine is the chemical lenalidomide, the generic form of Revlimid®. For many years I have received the drug with no copay through the generous gift of numerous foundations, and I owe them my life. A month of Revlimid© costs $20,000.

Trouble Ahead

Two years ago the foundation money that had been supporting me that year ran out. The pharmacy that provided the drug told me that I could still receive the lenalidomide if I agreed to a copay of $600-$800 dollars. I had agreed to a smaller copay of $246 a couple of months prior. But I was in no position to agree to another, much larger, one. The pharmacy agent said that grant money was in short supply and there was no way to predict if any additional funding would come my way.

So the pharmacy turned my case over to the Oncology Patient Advocate in Lihue, Hawaii, where I live. She, in turn, applied to Bristol Myers Squibb (BMS), the manufacturer of Revlimid. The agent at the company helped me obtain the drug with no copay for the remainder of 2023. I had been without Revlimid/lenalidomide (they are the same molecule) for more than two months.

I am on a low dose of the drug: a 5 mg capsule once a day for 21 days, then 7 days off, and the cycle is repeated.

One thing you may be interested in knowing is that my myeloma drug can cause birth defects. The drug is related to thalidomide, and many pregnant women who took that drug to help alleviate morning sickness in the 1960s gave birth to babies with severe skeletal defects.

Something Hopeful

To be funded for Revlimid through BMS requires a yearly application. My Oncology Patient Advocate worked with me to fill out the application in November. The deadline for submission is December 31. She faxed in the application and received a confirmation fax that all was in order.

Over the next few weeks I called BSM a couple of times to ask when I might learn the fate of my application. One representative told me I’d receive a call sometime during the first or second week in January. I told him that my current cycle of 21 pills would end on Sunday, January 15, and I’d have a week off until my next cycle would begin on January 22. He said that was plenty of time to arrange a shipment to me.

Trouble Ahead

When I had not received any communication from BMS the first week of January, I called the Patient Advocate Foundation (PAF) on Monday, January 8. The agent I spoke with said that the application review had only just begun on January 5 and that I should call back in a couple of days. I told her that I needed to start my new cycle on the 22^nd and she said that my prescribing doctor could request an emergency shipment.

I did call two days later and that agent told me my application was being reviewed as we spoke and that I should call back in a couple of days. I called again in three days and that agent told me that if I were to be approved, I would receive a phone call, and that if I was denied, I’d receive a letter. I told her I screen phone calls and she said I should answer any call from an unfamiliar area code.

As I was eating my delicious black cod sandwich and furikake fries at Kenji Burger in Koloa, my iphone rang displaying an area code from Pennsylvania. Ah, I thought, I’ve been accepted.

The Hunt Begins

The cheery person I spoke with told me that since my Humana health plan supported a copay for lenalidomide and not Revlimid, my application was denied. I countered with, “They’re the same molecule.” She agreed, but added that since BMS only provided the brand name Revlimid and I had been approved for the generic lenalidomide, I was denied. I was dumfounded!

I emailed my OPA (Oncology Patient Advocate) immediately. She replied that Humana had revised their lenalidomide letter and had resubmitted it stipulating they approved a copay for Revlimid. My OPA had a copy of that letter which had been submitted as part of my application. She called the Patient Advocate Foundation and gave them that information.

My advocate was told by the PAF agent that we could appeal, and that they would expedite an appeal based on that new information. But she gave no indication how long that would take. But get this, my OPA was also told that I should submit a letter claiming financial hardship and that my prescribing physician should resubmit a prescription for my Revlimid. All this information had already been submitted as part of my original application! We complied with the PAF request, and my OPA faxed those required documents to BMS.

What to do in the meantime?

I wrote to the angel at BMS who had set me up with Revlimid in the first place. I explained the current situation in detail. She wrote back saying that she had conferred with her superior. The bad news was that once the BMS Patient Advocate Foundation was involved, her branch of the firm could not intervene on my behalf. She apologized and said she wished she could help, but the matter was out of her hands. Bummer!

A day after all of the above had transpired I received an actual letter from BMS. It said that because I had not submitted proof with my application that my out of pocket expenses for drugs exceeded 3% of our annual gross income, my application was denied. If I wanted to appeal the denial, to please submit the requested documentation. Dumfounded a second time!

That request was never a part of the application! My OPA was as stunned as I was.

Our only possible source now was to see if there was any foundation support available. My OPA went online and found that there was funding available through the Healthwell Foundation (one of my previous supporters). Such grants come and go without warning, so she called the foundation and had to wait on hold for 2 hours before speaking with someone. Success! The grant was for $12,000 and there would be funds to cover my copay. Next step: find a pharmacy to provide me with lenalidomide. Still no word on that.

A bowl of calamansi limes. We squeeze their orange-colored juice onto papaya

A Happy Ending

But within a few days, everything changed. CVS specialty pharmacy, with an office in Honolulu, would provide me with lenalidomide at no cost. I enrolled online and received a phone call minutes later. The agent said the shipment would arrive the next day. And indeed it did. The UPS delivered the package, I had to sign for it, and then I ripped it open, extracted a capsule from its container, and downed it with a full glass of water.

Breakfast

Papaya filled with white pineapple and topped with passion fruit