Nickie Coby (puppybraille) wrote,
Nickie Coby
puppybraille

RX Label Enable: A Chance to Push for Healthy Changes

One of the things I've written about frequently here is the challenge of dealing with medications as a blind person. I've always said I have decent blindness skills and can usually identify my medications. But it can still be a challenge, and as I've said before, I know that others may not be as comfortable with the modifications I make. There's also the aspect of accessibility which says that the ideal solution would be not needing to come up with unique uses of rubber bands, tape or random braille labels.

So I'm thrilled to have recently learned about the American Foundation for the Blind's new
RX Label Enable
campaign. Which is "Making Prescription Labeling and Information Usable by People with Vision Loss". The idea is that they are working with "consumers experiencing vision loss, policymakers, federal regulators, doctors,
the pharmaceutical industry, retailers, assistive technology providers, and public
and private insurers to promote solutions, build consensus and take action." According to their site.

On the above linked page, there is more information, including studies on how to make labels accessible and a call for stories from people who are blind and/or their care givers. I shared my story, and I encourage any of you who have a story in this area to go to their site and share your story.

As I mentioned, I do have some experience in the medication label area. I take around 9 medications on any given day, and 7 of them are pills. There are three medications which are small, circular tablets, two which are capsules which are ovals and filled with either a powder or liquid, I'm not sure what it is, one medication which in the name brand form is shaped differently from any of the others and one med, taken as needed (multiple times per day), which is a big circular pill which tastes horrible. There is also a magnesium supplement, which is like swallowing a rock. Finally, there is a long acting patch, and of course my
LidoDerm
patches. The patches are definitely distinguishable from each other and of course I have no trouble telling them apart from the pills. It's still a lot to keep up with, but it's needed for now until we can get the pain and heart rate issues to calm down.

The trick is to make sure I know exactly which pills I'm taking when, how much and why. I know what each medication is for. I use the
MedLine
consumer site to look up the information I need on each medication. I then have an accessible set of information about side effects, emergency information and a basic idea of what each medication is generally used for. That can be helpful, since many medications used with RSD aren't what you would automatically think of when you think pain. In fact, I don't think there are any medications specifically approved for RSD by the FDA. So I feel it's my job to educate myself on what I'm taking.

One thing I forgot to mention is that before I ever take a medication home, I get an idea of what it is and what it should do from the doctor. I've been known to ask about side effects, class of medication, how it works and how long it should take to work. My doctors are excellent about educating me about my medications, so I rarely need to ask these simple questions, but it is an important thing to ask about.

Now that I know a bit about each medication, the fun starts. Now, I need to know which bottle houses the medication I'm supposed to be taking. And the thing is, you can't assume. If the pharmacy switches to a generic or if they switch between generics, the pills might feel different. I generally need to ask someone before I do anything because what I think I know may be inaccurate. It's also vital that if there's even a question in my mind that I might have trouble identifying my medication, I need to label it. At that point, I get out the tape or braille labels and get creative.

There have been times when I have had some near misses, or noticed a problem just after I took the medication. Luckily, it's always been something I could fix. But what if I had taken an Ambien instead of a "long-acting" (note the quotes), pain medication at 9 in the morning? That never happened, but it was a very close possibility at one point and all it would take is the tape falling off, or me getting slightly confused.

And for all of my attempts to adapt, there are big problems and wholes in most systems which are available to me. Quite frankly, with my medications, it would be too expensive to buy the recording systems. So here are a few problems with my current system:

  • My system doesn't allow for the recording of prescription numbers on the bottle, so I'm dependent on someone to help me call in refills. This is a big problem if I remember late at night.

  • If I pick up a prescription on my own, I need to wait for someone to help me check the information and rig up some adaptation to the bottle.

  • Even when I have a good system, tape can fall off.

  • It can be tricky to remember if the medication I want has one tape band or two. Sighted people need only read the bottle and see "Ambien" to confirm their selection is correct.

  • If I need help, my confidentiality is compromised. Some medications I don't want people to know I take, but for my safety, I need to ask for help if I'm unsure.

  • Even though the talking pill bottles look cool and would be helpful, they can get expensive and some I've seen seem bulky to me.



I hope this post explains the issues surrounding the inaccessibility of medications. Health is too important to be relying on the stickiness of one piece of tape. Please educate yourself on medication accessibility and do what you can to help make independent identification of medication a reality for all people with visual impairments. In other words, help make it easier for me to know what I'm taken, I wants to know my drugs, yo.
Tags: accessibility, chronic pain, disability related, health, rsd sucks
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