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Thursday, March 20, 2014

For 14 Million Americans with Disabilities, Accessible Rx Labels Equal Independence - article by Guest Blogger Janice Lehrer-Stein

as shared by Disability.gov blog ...

By Guest Blogger Janice Lehrer-Stein, a Member of the 
A photo of Janice Lehrer-Stein.
As someone who is blind, I make every effort to maximize independence in terms of my own safety and health care, yet the inaccessibility of most drug labels makes it impossible for me to have the same degree of certainty that I have in other areas of my life, such as my work and my leisure time. The bottom line is despite my desire and determination to be independent, when it comes to taking prescription medication, I’m not.
Many of us do the best we can – keeping prescriptions in one room and over-the-counter drugs in another, or by using complicated rubber bands tricks or other methods – in an attempt to sort and separate prescription medications from other medicines. The price of human dignity is dear to all of us, but the risks of taking the wrong prescription or the wrong dose of medication are equally huge – and let’s not forget, can even be potentially fatal.
Did you know that nearly 14 million Americans – and as many as 135 million people worldwide – most of whom are 65 years of age or older, experience low vision or blindness? Low vision can influence quality of life in both obvious and not so obvious ways. For example, it came as something of a shock to discover that older adults with vision impairments are three times more likely to have trouble managing medications compared to people who have no vision loss. When you consider the context, it’s easy to understand why. The increased risk of taking the wrong medicine or incorrect doses of medication can easily lead to overdose or mistreatment of health problems, emergency hospitalization or, in the worst case scenario, death. If we put this into the larger societal perspective by predicting what this might mean in the near future, the numbers reveal why addressing this concern is becoming increasingly urgent.
As the population ages, the number of Americans with low vision or blindness is expected to double in the next 20 years. Prescription medication information, including dosage and other instructions, warnings about side effects and expiration dates, are often missed by those unable to read print or small type. Other people are simply not aware of the options that are available to help them read inaccessible labels. So how can we help make the people faced with this new reality, as well as their pharmacists, physicians, caregivers and family members, aware of the dangers in addition to the options available to them, so that adequate steps can be taken to protect and address their specific needs?
Thankfully, in an attempt to answer these important questions, new guidance is now available from the U.S. Access Board on work that is being done to make prescription drug container labels more accessible to people who are blind or have low vision – including seniors and other persons with visual disabilities. Many questions remain for both industry representatives and consumers, such as, “How large does large print need to be?” “What is the best method of communicating recorded label audio information to users?” “What format is preferred when creating Braille labels?”
In July 2012, President Obama signed the Food and Drug Administration Safety and Innovation Act (FDASIA) into law, requiring the Access Board to engage both consumer and industry stakeholders in an attempt to compile best practices for a variety of emerging and innovative accessible prescription drug container labels. The working group included representatives of national organizations advocating for individuals and seniors who are blind or have low vision, as well as pharmaceutical companies and industry groups.
The guidance recommended by the broad-based working group offers different solutions for making prescription drug container labels accessible, including Braille, large print and auditory technologies, such as “talking bottles” and radio frequency identification tags. Additional accessible alternatives can be delivered digitally through smart phones and personal computers. In preparing its recommendations, the working group on accessible prescription drug container labels assessed these alternatives by taking into account various technical, financial or logistical considerations. The 18-member panel also prepared best practices for pharmacies to use, including specific directions for each format or option.
To that end, NCD has partnered with the Access Board and the working group to increase public awareness of the findings in the report by promoting and publicizing this information. NCD is pleased to be working with consumers, advocates, forward-thinking physicians and pharmacists from across the nation, who appreciate both the value and need to provide accessible prescription labels. As the Access Board report revealed, there have been too many preventable tragedies and dangerous mix-ups.
Our message is direct: Accessible prescription labels equal independence. Our common goal is simple: Inform consumers and the industry about solutions that already exist and promote advances to help everyone move toward the day when accessible labeling is commonplace and unfortunate accidents due to inaccessible labeling never happen again.
For years now, numerous organizations representing people with blindness and low vision have made the compelling case for safe, equal access to prescription drug labels. Advocacy groups, including theAmerican Council of the Blind (ACB), the American Federation for the Blind (AFB) with its prescription drug risk campaign, the National Federation of the Blind (NFB) and others, are doing important work to see that these recommendations are adopted by every pharmacy in every city across the nation. Industry partners have also pledged to commit their resources and devote their attention to see that the information reaches those who prescribe medications to ensure safety and access.
As a concrete step in this direction, on March 18, 2014, CVS/pharmacy chain, in partnership with ACB, AFB and the California Council of the Blind, announced that ScripTalk audible prescription labels will be made available for home delivery through the CVS.com online pharmacy. This is one sign of substantial progress.
Eighteen months after the release of the working group’s report in July 2013, the Government Accountability Office plans to review which best practices have been adopted, but before that can happen, we must first get the information out as far and wide as possible.
No one should have to risk injury or worse when taking prescription medications. Thankfully, the technology to improve access exists and so does the will to implement necessary upgrades in methods of delivery. The work of the Access Board, and the working group they assembled, is an important and necessary step toward ensuring independence will be possible with the medications we take – just as inclusion and accessibility has become the standard in other areas of our lives.
To read the National Council on Disability statement in support of the CVS agreement, go to:http://www.ncd.gov/NCD/newsroom/03202014a/.
To read the Access Board’s “Best Practices for Making Prescription Drug Container Label Information Accessible to Persons Who are Blind or Visually-Impaired or Who are Elderly,” go to:  http://www.access-board.gov/guidelines-and-standards/health-care/about-prescription-drug-container-labels/working-group-recommendations.
Janice Lehrer-Stein was appointed to the National Council on Disability – an independent federal agency – by President Barack Obama and confirmed by the Senate in 2011. She also sits on the board of Disability Rights Advocates, a nonprofit law firm in Berkeley, California and is a national trustee of the Foundation Fighting Blindness. A resident of San Francisco, Lehrer-Stein is married to Lenny Stein and is the proud mother of Emma, Risa and Jake. 
CVS/pharmacy has announced that it will provide ScripTalk talking prescription drug labels for online prescriptions. This new effort will provide a safe and convenient way for customers who are blind or have visual impairments to know about the important health and safety information on prescription labels. The U.S. Access Board contributed to this initiative through recommendations it made last year.

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