Saturday, November 2, 2013

The Failure of Our Medical System.

I apologize in advance because this post isn’t really about dementia or caregiving, however, it is about living with a chronic illness, which is definitely something I’ve written about here in the past. I may also have written about something similar, but it just seems to need repeating. I feel like I just can’t be the only person dealing with this problem, and I know this because I have a lot of experience with the medical community and their attitudes toward certain prescription medications.  I am quite certain that families dealing with the illness, dementia, and dying of their family members have, at one point or another, had trouble obtaining necessary medication because of the prejudices and problems of a physician.  This is for all those people who have either had difficulty getting medication for themselves or for a family member.

As I’ve said before, I’ve been dealing with Rheumatoid Arthritis since I was twenty-one years old, more than half my life now.  While I’ve learned how to live with it, it definitely affects every aspect of my existence.  I suffer from a lot of fatigue and I am in near-constant pain, and I’ve been on various pain medications for fifteen years now.  I’ve been on my current meds for a year now, and one of them just happens to be one of the most highly-abused and therefore highly-charged ones available. In fact, I have just been told by an on-call doctor (mine being out of town) that one of my prescriptions won’t be filled for a few days despite the fact that I have been out of it for a week.  This doesn’t seem to concern anyone and I felt like a drug-seeker merely for questioning it.  I can only assume that he doesn’t want the responsibility of prescribing these particular meds and is waiting until my doctor gets back to assume it.

I have repeatedly been shamed by the medical community for needing, and using pain meds – it is something I have had to get used to over time.  That, and their seeming inability to truly get the fact that people need pain meds for a very good reason, not just because they are fun to take. Believe me, I would prefer not to have to be on any medication at all – especially these.  Because pain meds have become the drug of choice for so many of the addicted, the federal government has enacted stronger and stronger restrictions on the prescription of pain medication and I have watched on the news as pain sufferers legally entitled to these meds are made to suffer because of the lack of self-control of those who abuse these meds.  This makes me very angry.  I have heard from caregivers about physician’s hesitation to prescribe pain meds to a dying individual out of concern that ‘they will become addicted’ to which I reply, “Who cares? They are old, in pain, and dying.”  Even families sometimes hesitate to request medication for their loved one because they are afraid of what the doctor will think or say.

If it’s not physicians causing difficulties with access to medication, it is the insurance companies.  I have often had trouble getting a prescription legally given to me by a doctor because my insurance company views it as too expensive, or experimental, or not really necessary, or that the generic is ‘good enough’ even though we all know that generics don’t always act in quite the same way as the name brand prescription.  I’ve heard of caregivers fighting for name brand dementia medications in the desperate hope of help for their loved one only to be denied by an insurance company for cost.

We continue to labor under a system of shame and judgment with regard to prescription medications of all kinds.  Those who are lucky enough not to need to use medication seem to have no concept of what a challenge it can be and that few of us are doing it for fun.  We need to change our attitudes and those of the medical community and remove the emotional charge we have placed on what is basically a tool to help those who need it.  I know that changing this system – these attitudes, prejudices, opinions, and cost-cutting decisions – will be hugely difficult and time-consuming.  But if each of us, when the time comes, can stand up to the doctors and pharmacists and insurance companies and fight, not only for our medications but for a change in attitude, maybe we can start to make a difference.


  1. Kathryn Barrett, RN, MSNNovember 2, 2013 at 6:15 PM

    Well said, Joy. As a nurse, I consider pain the fifth vital sign. It is just as important as BP, pulse, respiration, and temperature. If we, as health professionals, don't ask about it, understand it, and provide resources that can help one deal with it, we're not doing our jobs.