Specialty Pharmacies Cater to the Blind and Those with Impaired Vision (https://www.nytimes.com/2021/09/21/health/blind-pharmacies-access.html)
By Joshua Brockman
• Sept. 21, 2021
During the pandemic, Curtis Chong has avoided the 2-½ hour journey to his grocery
store pharmacy — including a round-trip bus ride — to pick up his prescription.
Even though Mr. Chong, a retiree in Aurora, Colo., said he is readily identifiable as a
blind person, because he uses a white cane for mobility, his pharmacist never suggested
he could have his medications labeled in an accessible way.
Through a Zoom meeting, Mr. Chong learned about Accessible Pharmacy Services, a
start-up, that now delivers his medication with labels that convert text to speech. Mr.
Chong said the new specialty pharmacy provided an array of products and assistance “so
that the blind can identify their medications privately and independently.”
Unlike most other pharmacies, Accessible Pharmacy does not cater to walk-in customers
or, for that matter, people who can see. The company offers service to blind people and
those with low vision, including assistance from those who can see and free home
delivery for prescriptions, medical devices and over-the-counter medications.
The pandemic has cast a spotlight on inequalities at pharmacies, where precautions and
new programs have further limited access to health care for people with intellectual,
developmental and physical disabilities.
Critical services like drive-through coronavirus testing, vaccination and pharmacy
pickup windows have failed in many instances because they were rolled out in ways that
were inaccessible. How can a blind person drive through a pharmacy? Why isn’t walk through an option?
In addition, labeling and packaging have been a longstanding problem for older adults
and for anyone who cannot read or understand the tiny type that appears on most
prescription bottles and the accompanying pamphlets listing side effects and drug
interactions.
There is no national standard that specifically addresses accessible labeling or
packaging, despite the potential needs of more than 85 million — approximately 1 in 4 —
people in the United States who, according to the Census Bureau, have a disability, and
more than 12 million people who have serious difficulty seeing.
The Food and Drug Administration is responsible for regulating prescription drug
labels, and under a 2012 law, required a U.S. agency to develop guidelines for accessible
labels for those who are blind or visually impaired. In 2016, the Government
Accountability Office found that blind and low-vision patients “continue to face barriers
accessing drug label information, including identifying pharmacies that can provide
accessible labels.”
Some improvements have been made, and states have taken the lead on pharmacy
oversight. A few, including Pennsylvania, Massachusetts, and Maine, are exploring
legislation that would require pharmacies to provide prescription labels in Braille, large
print, high-contrast and with audio. In 2018, Nevada passed a law requiring pharmacies
to provide a prescription reader or to help patients obtain one, and Oregon passed a
similar law in 2019.
Nestled in a nondescript mini-mall, next to a Pizza Hut and a partially vacant
building, Accessible Pharmacy operates in Fairless Hills, Penn. Concierge agents speak
with each patient on the phone, coordinate refills and drug interaction questions with
their doctors and consult resident pharmacists. A packaging and labeling menu for
prescriptions includes Braille, large print, and audio — all free of charge.
“We decided to create a company where accessibility and reduction of barriers would be
our primary focus with an incredibly welcoming sense of hospitality,” said Alex Cohen,
45, company co-founder and professor of marketing at West Chester University outside
of Philadelphia, and one-time general manager of a hotel. He became blind after being
diagnosed with retinitis pigmentosa, a genetic degenerative disease, when he was 20.
Accessible Pharmacy, which launched in May 2020, resulted from collaboration
between Mr. Cohen, the chief marketing and accessibility officer, and Andy Burstein, the
chief executive.
“It’s still like the Wild West for us in terms of reliably and consistently finding solutions
at the national level,” said Mr. Chong, 67. He gets his prescriptions from Accessible
Pharmacy with ScripTalk. A tag is placed on the bottom of each pill container that is
programmed to include medication information. It can be read aloud using the
ScripTalk app on his iPhone or with a free-standing device. (En-Vision America, the
manufacturer, said ScripTalk is available in 25 languages and is used by over 20,000
people.)
Mr. Chong pays more for his medications because Accessible Pharmacy isn’t a preferred
pharmacy with his Medicare plan, but said he is willing to pay extra so that his
medication labels are tailored to his needs.
He also said he found the websites of major drugstore chains problematic because of
unlabeled graphics, requests for the prescription number and a “general lack of
efficiency” when ordering refills.
Accessible Pharmacy employees respond to video calls via Be My Eyes, a free app that
provides assistance for blind and low-vision people using a network of sighted
volunteers. Users requiring help with prescriptions or devices receive sighted assistance
from the pharmacy. It can also set up and send out talking medical devices including
blood pressure cuffs, thermometers, blood glucose meters and continuous glucose
monitors and troubleshoot through the app, once patients have a device in hand.
The pharmacy also fills orders using specialized equipment and can provide enhanced
packaging with tactile differentiations for morning and night doses.
Lynn Heitz, 63, a community training specialist for the blind who lives in Phoenixville,
Pa., said she preferred the company’s disposable pill organizer so that she doesn’t have
to figure out what’s in every bottle, and the pharmacy sends her the next month’s supply
one week before she runs out. After she and her husband were diagnosed with Covid-19,
the pharmacy sent an overnight package with prednisone and cough syrup that her
doctor prescribed.
This summer, the American Foundation for the Blind expanded its research on the
effects of the pandemic to learn more about service interruptions as well as the short and long-term issues encountered by those who are blind, deaf and blind or have low
vision.
In an Op-Ed last fall, Penny Rosenblum, the former director of research at the
foundation, described one such obstacle: “‘Drive-thru’ and ‘curbside pickup’
discriminate,” she wrote. “This doesn’t work for those with vision loss. Communities
must have alternative plans, be it porch delivery, walk-up or bike-thru.”
DeAnna Quietwater Noriega, a writer and a full-time caregiver for her husband, Curtis,
gets the couple’s prescriptions and any other pharmacy items they need hand-delivered
to their front door by D&H Drugstore in Columbia, Mo. Ms. Noriega, 73, was born with
glaucoma and has been blind since she was 8.
“They know us by name and always treat us with respect and friendliness,” she said of
her independent pharmacy. “They go the extra mile to be sure our medications are
compatible with each other and argue on our behalf if our insurance company balks at
the drug our doctors prescribed.”
Ms. Noriega’s medications come with ScripTalk labels that she reads with her iPhone.
Previously, she filled their prescriptions through Walmart. But the problem, she said,
was the couple was never told when the refills had run out until they showed up at the
pharmacy. “We were expected to read the very small print on the label,” she said.
Many independent pharmacies offer personalized services including home delivery to
meet customers’ needs. Major drugstore chains also offer home delivery in many places.
Over the last several years, chain pharmacies have become somewhat more accessible,
in part, because of lawsuits and negotiations led by advocacy organizations like the
American Council of the Blind.
But finding a pharmacy with a full menu of accessible solutions under one roof has been
elusive. Last summer, CVS Health, which offers ScripTalk via its website, added a
feature to its app called SpokenRx that can scan labels and read the prescription aloud,
which the company said is now available in 10,000 stores.
Walmart also provides ScripTalk in nearly 1,800 Walmart and Sam’s Clubs locations.
And there have been other agreements reached with Walgreens to offer its Talking Pill
Reminder free of charge. Eric Bridges, executive director of the council, said they have
yet to engage with Amazon Pharmacy.
Dr. Steven Erickson, a pharmacist and professor at the University of Michigan College of
Pharmacy, teaches a class where guest speakers with various disabilities share their
experiences with pharmacists so that students can demonstrate “disability cultural
competence,” he said.
“Without that education there is a greater risk of patients stopping the medicine, or not
taking it as intended by their physician,” he said.
Getting one-on-one time with a busy pharmacist can also be daunting, so people often
settle for printed instructions. The small font size can be an impediment for people with
low vision. In addition, those with cognitive issues or limited health literacy may have
difficulty understanding the material. Lack of access can also affect deaf patients when
the pharmacist doesn’t know sign language or when video relay service or a translator
are not provided.
Disposable pill organizers and sealed packets provide a “user-friendly” solution, Dr.
Erickson said, but some large chains do not provide them. (CVS offers presorted packets
that can be delivered to one’s home or pharmacy for pickup.) And refilling medications
at the same time — so-called med-syncing — also helps patients by reducing trips to the
pharmacy.
“Both customized patient medication packaging and med-syncing are especially
beneficial for people with disabilities who may face transportation barriers or difficulty
manipulating traditional medication vials,” Dr. Erickson said.
Mr. Cohen said the company meets monthly with a packaging advisory committee of
blind adults. Customer feedback led to the addition of pet and guide-dog medications to
the delivery menu and over-the-counter sundries like aspirin and toothpaste.
What’s more, Dr. Erickson said it’s common for some people — especially those with
intellectual and developmental disabilities — to have other medical conditions that
require five or more prescriptions, a scenario known as polypharmacy.
For a few years, Hayden Shock, 28, who is deaf and had a kidney transplant, took
several drugs for his condition. During the pandemic, Mr. Shock, a program analyst for
the General Services Administration, who lives in Arlington, Va., used either an app that
provides speech-to-text, called LiveCaption, or pen and paper when he went to
Walgreens.
Masks posed another difficulty because they blocked the visual clues of pharmacy staff.
(Safe’N’Clear makes an F.D.A.-approved mask with a window.) “I would not call myself
a lip reader,” he said. “But I like to see people’s facial expression and lip movement
when I communicate with them.”
When his insurance changed to Inova Pharmacy Services, which is affiliated with the
regional nonprofit health care provider, it delivered his prescriptions. Through his video
phone number, which is connected to apps like Convo, Purple or Sorenson, he can talk
to the pharmacy staff with the aid of a sign language interpreter.
So far, Accessible Pharmacy has made inroads largely in the Northeast and mid-Atlantic
regions of the country. Mr. Cohen said the company is licensed in 31 states and hopes to
expand to all states.
The pandemic, Mr. Cohen notes, has given pharmacies and retailers reasons to rethink
their customer service, because many “overestimated the role technology could play in
assuaging” the fears of people with disabilities. The assumption that these communities
of people with differing needs are tech savvy is “perilous,” he added, noting that some
people still only have a landline.
“We always welcome a phone conversation,” Mr. Cohen said.