by Mike Freeman
From the Editor: Labeling items has always been a challenge for the blind, since the printed labels affixed to objects give us little in the way of usable information if we can't read them. Of all the items we label, none poses more of a challenge than medication. Sometimes labeling is easy if the number of medications one takes is small. But, when the number grows and the instructions are more complex, the rubber band, Braille label, or dot of glue doesn't provide enough information.
To provide blind people with all the information that appears on a drug label, several competing systems have emerged. In this issue we will discuss two systems, and we will print the articles in the order they were received. One article has been edited by Mike Freeman, the president of the Diabetes Action Network, the other by our former affiliate president in Oklahoma, Les Fitzpatrick. Les works as an employee of AccessaMed. Our request of Envision America and of AccessaMed was that they make what they wrote both interesting and informative and that they be more than simple advertisements for their products. I believe each has made a genuine effort to comply with our request. Of course both companies need and want to publicize what they have, and each needs to capture market share, so in these two articles you will find some general information and some straightforward advertising. We hope this is helpful to all concerned.
"Take two aspirin and call me in the morning."
Ah, if only it were that easy! For most of us, though, managing our prescription medication regimens presents numerous issues and roadblocks. Trying to decipher pill shapes, bottle sizes, and multiple instructions can be more than just frustrating. It can also be hazardous to your health.
I'm sure we have all heard stories about medication errors. Not being able to easily read the label data can lead to a myriad of issues: taking the wrong medication or the wrong dosage, taking expired medication, taking medication differently than prescribed, mixing up medications, not knowing warnings or interaction notices, or having generic drugs changed without notice.
Isolated incidents? Think again. Prescription medication errors are more common than you might think and more frightening than you might imagine. It's not just the medication name and dosage to which we need access. More information appears on the label that is vital to our safety and health. If you take only one prescription and the dosage never changes, you are probably doing okay on your own without accessible accommodations. However, many of us regularly take multiple medications. The more we take, the harder it is to remember information and to keep everything controlled and organized, and the easier it is to get things mixed up. In the past the only option was relying on systems such as rubber band reminders, keeping medications in a specific order on the counter, refilling old specially labeled bottles with new medicine, or having to ask another person to read the label for us. While these are still useful systems, many may find them inadequate.
Much has been said in the news lately about the technological advances in helping blind and visually impaired people manage prescription medications. Legislative and regulatory advances have been made as well, resulting in updated laws and requirements for pharmacies in providing access to prescription label information. This mountain of information can be confusing and overwhelming, enough to bring on a migraine, for which you might need to take a prescription, which means you need to access the label information . . . well, you get the idea.
When the Americans with Disabilities Act (ADA) was amended in 2010, it included more detail and clarified instructions on how public accommodations—specifically citing pharmacies—must provide auxiliary aids and services to blind or low-vision customers in order to provide effective communication. The new language goes on specifically to list large-print materials, Braille materials, and accessible electronic and information technology as recommended solutions. While the original rules and regulations have been in effect for more than twenty years and the updates for three, many pharmacies are still refusing to provide needed public accommodations that would make it possible for the blind and visually impaired to access prescription label information safely and privately. Whether this is due to ignorance of the law and available technology or claiming financial burden, such excuses have worn out their welcome. It is time for the pharmacies to be educated and time for them to implement solutions.
To answer the excuse of ignorance, the Food and Drug Administration Safety and Innovation Act was passed in 2012. As part of this act the US Access Board was authorized to assemble a working group, with representation from members of both pharmacies and consumer advocates representing the blind, deaf-blind, visually impaired, and more. Their task was to develop a list of best practices or recommendations for pharmacies to implement and follow. This would ensure that their blind and visually impaired patients would have safe, private, independent, reliable, and consistent access to prescription label information.
After multiple meetings members of this working group devised a list of best practices in providing accessible prescription labels. They included detailed advisory criteria for producing large print, audible, and Braille labels. They were clear that a one-size-fits-all package would not work. This reflects the updated language of the ADA, which now obligates the pharmacy to consult with the individual and find out what aid is needed to ensure the effective communication of critical information.
One item of note that seems to confuse many is the statement that the best practices established by the working group "are not mandatory." It reads, "They [best practices] are not to be construed as accessibility guidelines or standards of the Access Board, nor do they confer any rights or impose any obligations on working group participants or other persons. The law makes it clear that nothing…is to be construed to limit or condition any right, obligation, or remedy available under the Americans with Disabilities Act of 1990…requiring effective communication, barrier removal, or nondiscrimination on the basis of disability."
Wait! What does that mean? The best practices have no influence? The pharmacies don't have to implement anything? The ADA doesn't have to be enforced? Actually, it means just the opposite. The FDA Safety and Innovation Act was intended to nullify any excuses that remained for pharmacies in denying access to label information. By outlining and detailing how to provide multiple solutions for effective communication to their blind customers, pharmacies would no longer have the defense of not knowing how to help or what services were available. The Safety and Innovation Act is a study guide to the ADA. ADA outlines what pharmacies are required to provide for their patients, and the Safety and Innovation Act outlines how they can do it. It gives support to the individual to say, "These are my rights. Here are your options. This is what I need. Now please do it." As stated in the ADA, "In order to be effective, auxiliary aids and services must be provided in accessible formats, in a timely manner, and in such a way as to protect the privacy and independence of the individual with a disability."
So what is the next step? It's clear that we must raise our voices loudly and insist that pharmacies provide the services granted to us under the ADA. It is important that we speak up, both as individuals and as communities and advocacy groups. We need to make sure that the pharmacies understand that we know our rights and that we will not take no for an answer.
Because of a "negotiated legal settlement," one major pharmacy chain is beginning to offer accessible prescription labels. Over the last year or two Walmart has been providing the ScripTalk™ Talking Labels to patients at about three dozen pharmacies across the country, as well as through its mail order facility. That's great, and it's totally free. In conformance with the requirements of the ADA, pharmacies can't charge for accessibility. The ScripTalk Station patient reader is free to the individual by calling the company at (800) 890-1180. So, if you don't happen to have a local Walmart that is supplying ScripTalk labels, it is imperative that you ask your Walmart pharmacist for the service. Tell him or her that you want it. Demand that Walmart provide it.
In addition to Walmart, CVS is also providing the talking labels through its mail order service. There are another hundred or so pharmacies across the country that are currently offering ScripTalk to their customers. Many of these pharmacies offer large print and Braille labels too.
For those pharmacies that continue to deny accessibility, we can't lose hope. Again, we must speak up and speak out, and keep doing so until we get what we need. Ask to talk with your pharmacy's district supervisor, or call its national customer service line. Request to speak with an ADA compliance specialist, explain the situation, and state your rights and requests. Let him or her know that an ADA lawsuit is not out of the question. The point here is that the squeaky wheel gets oiled.
Let's not play Russian roulette with our medications anymore. We live in a time in which technology is continually advancing. We just need to make sure that the laws and their enforcement are advancing as well. Not only can we make our own lives safer and more independent, we can make a change and a difference for everyone if we take action and continue to push this forward. The ADA is in place. The US Access Board's best practices for prescription labels are in place. The technology is in place. Accessibility is within reach. Let's grab it!