Holding steady

Tomorrow makes two weeks that my mom has been home, and so far so good. She’s been very careful about what she eats, but also focusing on trying to put some weight on her 95-pound frame. She’s had no nausea, not even after chemo.

She has a supply of her magic lollipops, just in case the pain returns. Getting those lollipops was a study in the chaos of healthcare.

Fentanyl is a powerful painkiller that comes in many forms, most commonly in a slow-dose patch for chronic pain. There has been a lot of news coverage about prescription painkiller abuse over the last few years, and it’s really heated up over the last few months. Over the years, this has made physicians hesitant to be aggressive in their pain management due to liabilities and risks. Oncologists, however, understand the importance of pain management.

Last year, the FDA approved a lollipop form of fentanyl sold under the name ACTIQ, specifically for cancer-related pain. While my mom was in the hospital, her oncologist prescribed it and it was amazing. The drug is absorbed through the cheek and works incredibly fast. When she was discharged, he put in the notes that she should have a prescription. But it was her primary care physician that signed the discharge orders, and he of course had never heard of the painkiller lollipop and it was not included in her orders for discharge.


A few days after discharge, my mom had an appointment with her oncologist and he asked about the lollipop, and we told him the story about the primary care physician and how she needed a prescription. He was upset that his orders were not included in her discharge, and he wrote a prescription for us to take into the pharmacy.

The nurse at the office called several pharmacies (CVS, Walgreens) and NONE of them carry this drug. In part because it’s too expensive (yeah, right, when does a pharmacy NOT carry a drug because of cost??). I suspect they don’t carry it because it’s a hot potato and ripe for abuse (read: lawsuits).


There is a small family pharmacy in town that caters to oncology patients, so we went there. The woman at the counter said they don’t carry it because pharmacies have to be specially registered to dispense it. It’s part of what is called in the pharma industry as a REMS program. REMS stands for Risk Evaluation and Mitigation Strategies. It’s an FDA program that more closely monitors approved drugs to ensure that the risks don’t outweigh the benefits, so they want to keep a close eye on who prescribes, who dispenses and who takes it. And they track any problems that may occur.

When I pushed the woman at the counter, she went back to the pharmacist and returned to tell me that, why yes, they ARE a registered pharmacy and they DO have the drug. HOWEVER, they carry it only in boxes of 30 and the prescription is for 20, and they don’t break the box, and they can’t change the prescription, so we have to return to get an updated WRITTEN prescription from the physician. And, by the way, the PHYSICIAN is not registered to prescribe it, according to the computer.

FAILURES #3, #4 and #5.

By now it was after 5 PM, and the physician’s office closes at 4:59:30. And the answering service is clueless, and I can’t reach the oncologist, only the guy on call and this whole thing is way too complicated to start from scratch and he can’t resolve it anyway.

FAILURES #6 and #7.

So, being familiar with REMS programs (because some of my clients in the pharma industry have fought tooth and nail to avoid being in it), I looked it up online. I got all the information, including the phone number and the forms for the physician to complete to get registered. Why am I having to do this?? How would someone who doesn’t have my basic understanding of health care, pharma and the Internet do this?

First thing the next day, I call the doctor’s office and am able to speak directly with him. I explain the situation (both the need for a revised script and the REMS snafu). He’s exasperated — think how I feel! I gave him the phone number to call to register, and then we waited. Another full day.


The next day my mom calls, since I had to leave and was unavailable due to work. They figured it out, the pharmacy has the updated script and everything is ready to go. EXCEPT Medicare does not PAY for this drug and it costs nearly $600.


The pharmacy, being a small family-run pharmacy, is big on customer support. So they check with Mom’s supplemental health insurance (note to friends: having decent insurance is paramount, but the issue of health care reform will have to wait). The insurance company DOES cover it (amen!) and now the cost is under $200.

So now, finally after this EPIC FAIL of the health care system (there is NO SYSTEM, people…just a hodgepodge of confusing, conflicting players) my mom is fully stocked with necessary and effective pain medication, should she need it.

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