I get a specialty medication for my Pulmonary Arterial Hypertension or PAH, that is very expensive and has to be delivered to me by over night UPS. Along with receiving this specialty medication is that you are signed up in their program, meant to provide information and answwer any questions you have with your disease or medication. There is a nurse practitioner on call to answer “all” of your questions and the nurse would call me once a month to discuss my case and answer any questions that I had.
When they called, the conversation always went the same way with the gathering of a bunch of my information about any side effects I was experiencing, if I was having my required monthly liver function tests, etc. Then they would ask if I had any questions, and every time I did have a question, the answer was always “It is best that you check with your doctor directly on that”. A few months ago, they called and started asking a bunch of questions about depression and if I had thoughts of suicide. When I asked why they were asking that, if there were newly discovered side effects from the medicine that caused depression and thoughts of suicide, they said they were just checking to see if I was okay. What the heck? Do I sound like a potential suicide candidate?
I eventually just stopped taking their calls as I just felt as if they were only gathering information on me as if I was a part of a clinical trial, and not answering any of my questions. The scary thing about specialty medications is that I am sure there are no extensive clinical trials, and patients out in the field are the clinical study.
Last week I received a call from them telling me that I needed to call them back to re-enroll in the program, that my Sarcoidosis specialist had signed me up and they needed to get me back into the program. What program? To gather information on patient responses to the medication? At the end of the message, the nurse said, “… and if you have any questions, we are here to help”.
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