How Costly the Cure?

I have worked in the oncology arena for close to 20 years. In all of that time, I have helped patients with numerous discharge issues from getting the physical support they need, to ensuring spiritual and emotional needs are met, to making sure that they understood all there was to understand about the medications they’d be taking once at home. I prided myself on how thorough my discharge instructions were. I made sure to use both generic and brand names of drugs so that they wouldn’t get confused if the pharmacy or what they already had at home was called something different. I always wrote the instructions in terms they could understand and made sure I documented what time they last took the medication and when it was due again. I would get frustrated with the nursing staff when I felt that they were not taking the discharge teaching serious enough and simply handed the patient a form that the doctor or computer had generated. Why couldn’t everyone see the importance and be as thorough as I was? Or at least as good as I thought I was. That is, until I found out what I didn’t know.

For those of you who have read other blogs of mine, you will know that my mother was diagnosed with breast cancer late last year and underwent a mastectomy. She was node negative so no further chemotherapy or radiation was necessary. Of course, I explained to her, that she would most likely be prescribed an oral drug that she would need to take for about five years that had shown great strides in the recurrence rates of breast cancer. She was somewhat disturbed about that. Why did she need to take that if she didn’t have cancer? Were we just not telling her everything? Once I explained again that it wasn’t a drug that was treating cancer but rather helping to prevent it from coming back, she felt better. She felt better that is until she went to pick up her prescription. She went to the pharmacy to pick up her 30 pills and the bill was close to $400 after her prescription drug coverage! Like most people her age, she is retired and on a very fixed income. She doesn’t have $400 extra a month. I was shocked. She told me that the first few months, the doctor had given her a “coupon” and it only cost her $10. But that was only good for three months. Of course I investigated the cost of other aromatase inhibitors like this one to see if there was another that was less expensive, but they all were about the same cost. I went to the pharmaceutical companies’ websites to see if they had any help. That’s where the $10 co-pay came from.

The pharmaceutical company had an offer that the patient would only have to pay $10 a month if they met the criteria, and they’d pick up the rest. Thank goodness. She met criteria and for a short while I was relieved. Till I read further. They’d do this up to a total of $800 that they paid. So that meant, after 2-3 months people were no longer eligible. The other pharmaceutical companies were similar in their assistance programs. So now where do we go? I talked to my mom and told her to talk to her physician again. Maybe he’d have some other resources. I told her to contact the American Cancer Society to see if they could help and that she should call the pharmaceutical company directly to see if they had any other assistance. She’s in the process of all of that and hopefully will be able to continue on the treatment.

So what does that have to do with my discharge planning? I think that we, as nurses, need to be more aware of the things that our patients will face when we send them home. We, obviously, cannot know the cost of every medication that they take. But we should have a general knowledge of the ones that are extraordinarily expensive and make sure that they are aware of it and have the resources that they need to face. I know that there are plenty of nurses out there that say that’s the physician’s job, but I think it’s everyone’s job. That is my patient, too. I want to make sure that they are not surprised by anything and that they have the resources they need to face whatever it is that they will have to once going home. Had we known this about the medication my mom is taking, we could have tried to contact these other resources long before she was three months into her therapy.

Patients who take oral chemotherapy are in a similar predicament. Many insurance companies do not provide the same coverage for oral chemo as they do for infusional. Many states though, are addressing this legislatively to make sure that both forms of chemotherapy have the same coverage. You should go to your state legislature website and search for any such bills in your own state. If there is a bill pending, write to your representative to encourage them to vote yes. If it is not even being addressed, write to them and let them know you want them to sponsor such a bill. We are sometimes the only voice of our patients. We are their advocates and we need to speak up loud and clear.