When the Supreme Court’s judgments are disregarded and exports of Braille-embossed medicines are prioritised, India’s visually impaired population bears the brunt.
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INDIA is home to 2.28 crore people with various disabilities, of whom around 77 lakh are visually impaired, as per data collected from the 2011 census.
Reduced government and private sector intervention in manufacturing medicines, specifically the absence of embossed Braille packaging, has resulted in visually impaired persons relying on others for medical assistance.
Understanding the problem
The Rights of Persons with Disabilities (RPWD) Act, 2016, defines a ‘person with disability’ as a person with long-term physical, mental, intellectual or sensory impairment which hinders their full, effective and equal participation in society.
The use of assistive technologies is certainly making a difference for visually impaired persons but they continue to face challenges in availing correct medical treatment.
Reduced government and private sector intervention in manufacturing medicines, specifically the absence of embossed Braille packaging, has resulted in visually impaired persons relying on others for medical assistance.
An essential aid for visually impaired people is Braille embossing on medicines. However, pharmaceutical companies in India are yet to produce Braille-embossed medication to assist them.
B.R. Alamelu, an associate professor at Delhi University, who suffers from benchmark visual disability— at least 40 percent visually disabled— says that purchasing and consuming medicines on her own was fraught with challenges. While buying medicines, Alamelu has to rely on oral instructions from the chemist.
She shares, “Chemists give a fair idea of the shape and sizes of the medicines and inform about the dosage.” Alamelu believes that oral memory is short-lived and not reliable. “I have to depend on others to give me the right medicines,” she adds.
According to Alamelu, the use of assistive technologies— that make daily chores easier for visually impaired people— is certainly making a difference for them, however, all visually impaired people continue to face challenges when it comes to availing correct medical treatment.
Alamelu adds: “An essential aid for visually impaired people is Braille embossing on medicines. However, pharmaceuticals in India are yet to produce Braille-embossed medicines on a large scale.”
Covid-19’s impact on the visually impaired
Dhiru Rajosara, a government employee, went completely blind in 2008, putting an immediate halt to all his plans, including education. In 2012, he resumed his education.
“I work as a volunteer with [the] Blind People’s Association, play chess and participate in outdoor activities,” Rajosara says. But despite being active and independent in other walks of life, Rajosora has to depend on others for his medicines.
Rajosara cannot differentiate between colours and depends on the shapes and sizes of several things to identify them. However, the problem for Rajosara arises when medicines have indiscernible shapes. He says, “In the US and Europe Braille script on pharmaceuticals is already available, however, it is a long road for India.”
He agrees that pharmaceutical companies in India do not pay much attention to Braille packaging, as “it is a common notion that visually impaired people are always dependent on others and can take someone else’s help”.
Alamelu is of the view that challenges are aggravated during emergencies when no help is near. She recalled that the lockdown following Covid pandemic was particularly troublesome since everyone was confined within four walls and many were pushed into isolation.
“US and Europe are already making the Braille script on the pharmaceuticals available, however, it is a long road for India.”
According to Alamelu, there is a pressing need to have Braille packaging on pharmaceuticals because many visually impaired people live alone with nobody to assist them with medicines.
She clarifies that the problem was not caused by Covid, but the pandemic certainly aggravated it, noting that “people living alone used to take help from their loved ones through video calls. However, the blind population faces difficulty in operating smart devices as well.”
The prolonged lockdown led to several issues, such as medicines not being delivered on time to visually impaired people, resulting in casualties.
Alamelu concludes, “The packaging and density of the package gives a hint, but it can be deceptive at times. Nothing can compensate for a Braille script.”
Technology, trials and tribulations
Zuhaib Khan, a student pursuing a master’s degree in journalism, is 100 percent visually impaired and says that the absence of Braille packaging on medicines has forced him to adapt to technology.
Also read: Rights of differently-abled: Sympathy is one aspect, but practicality is another, says Supreme Court
He uses apps such as Tech Freedom and Talk Back, which help him not only decipher what is written on the packaging of the pharmaceutical drugs but also understand the minute details such as the ingredients and the chemical composition of the medicines.
The advent of technology and user-friendly apps has made it seamless to take medicines independently. However, he brings out the caveat in this whole process.
He says that “Artificial intelligence cannot be substituted for Braille-embossed packaging, as scanning the product and listening to the audio note takes more time than understanding the necessary details from the Braille script.”
According to him, it is more time-consuming, and people who are not well-versed with technology find it difficult to adapt to these apps.
“Since the process of scanning the medicines and listening to the audio afterwards has so many hassles, people skip this step altogether and seek help from others to take medicines,” he adds.
Rajesh (name changed) is a student residing in a hostel in the Mukherjee Nagar area of Delhi. He says that the medical syrups should come with Braille packaging as it becomes impossible to identify them in the absence of the Braille script.
“[Medicine] bottles are usually identical and do not come with any different markings on them. Whenever I need medicines, I usually have to rely on the medical staff of the hostel, even for a small medication. The medical staff customises small packets so that the other blind people get a better understanding of their doses,” he says.
According to him, the doses just give him an idea of the quantity but fail to specify the intervals at which the medication should be taken. Lack of such information is a major cause of accidents that occur due to overdose or lack of proper medication.
Rajesh relies completely on the knowledge and capabilities of the medical staff of his hostel to administer his medicines. For better accessibility, he uses Talk Back, a pre-installed app on Android phones.
“Artificial intelligence cannot be substituted for Braille-embossed packaging, as scanning the product and listening to the audio note takes more time than understanding the necessary details from the Braille script.”
“Talk Back is an essential accessibility tool that enables the user to control their device when they are not looking at the screen. It proves to be helpful for mobility and connecting to my devices,” Rajesh adds.
According to Rajosara, companies that do use Braille embossing on their medicines’ packaging, end up exporting the medicines to cater to the demands of American and European markets.
He gives an example of Yamir Packaging Private Limited, an Indian company that packages medicines with Braille-embossed text on cartons that are exported to Europe, as is mandatory. “However, there are no such rules here in India,” she points out.
What do the courts say?
The Indian government and some pharmaceutical companies are in the nascent stage of establishing Braille texts on medical packages.
Under the Support for Establishment/ Modernisation/Capacity Augmentation of Braille Presses, a Union government scheme, the target is to establish Braille printing presses which can later be supplied to pharmaceutical companies. However, no comprehensive action has been taken in this regard.
ACG Pampac Machines Private Limited, a pharmaceutical company, produces efficient, customised and cost-effective blister packing, carton-making machines and packaging solutions. These processes help to emboss the expiry dates of products in Braille along with the normal embossing technique.
The Drug and Cosmetics Act, 1940 has a critical role in regulating the import, manufacture, distribution and selling of drugs and cosmetics. However, it does not definitively require Braille to be embossed on drug containers and appears to be less intense than the Americans with Disabilities Act Accessibility Guidelines for Buildings and Facilities; Architectural Barriers Act Accessibility Guidelines.
Section 15 of the RPWD Act outlines that every person with a disability has the right not to be discriminated against by anyone, and to access goods, services, facilities, accommodation or transportation services, including health care services.
The RPWD Act makes it compulsory for the government as well as private organisations to ensure that goods and services are made available and accessible to disabled persons, as stated in Section 42 of the RPWD Act. This involves Braille-embossed texts for the visually impaired and other physically disabled persons.
In the case of Sambhavana versus Union of India, commonly known as the ‘blind people’s legal aid case’, the petitioner filed a public interest litigation to urge the government to ensure that Braille labels are made compulsory on all essential medicines.
The Delhi High Court decided in favour of the petitioner and ordered the government to ensure that pharmaceutical companies manufacture their products in accordance with Section 14 of the RPWD Act.
In National Association for the Blind versus Union of India, the Supreme Court ordered the government to hasten the work on the enhancement of accessibility features as per the RPWD Act, which aims to install Braille on the packaging of drugs and medicines, among other features, in favour of the physically challenged.
Also read: Plea in SC to direct Centre, states to provide sign language interpreters in their press briefings
Despite the court’s judgments, no steps have been taken towards the introduction of Braille packaging on pharmaceutical drugs. The Union ministry of social justice and empowerment has not communicated its official response on behalf of the government.
Digital literacy and universal design
Piyush Kumar, an advocate practising in the Delhi High Court is of the opinion that concerned ministries, such as the Union ministry of health and family welfare, must amend the existing laws to explicitly mandate Braille-embossed script on all pharmaceutical packaging, including bottles.
Despite the court’s judgments, no steps have been taken towards the introduction of Braille packaging on pharmaceuticals. The Ministry of Social Justice and Empowerment has not communicated its official response on behalf of the government.
He elucidates, “Regular audits of pharmaceutical drugs must be undertaken by the concerned government agencies and more stringent penalties and fines must be imposed on the pharmaceutical companies for non-compliance.”
Technology-driven interventions are offering alternative methods to make medicine accessible to the visually impaired. Apps such as Smart Vision Reader and Insta Reader enable people to scan medicines and obtain the necessary information.
If the cost of the medicine increases too much due to Braille embossing, a small strip of Braille script can be rolled and put inside the packaging of the tablets, ointments, syrups and other essential medicines of regular use along with the first aid boxes.
However, Alamelu believes that digital technologies can only be used by literate people, and the problem persists for people on the less privileged side of the digital divide.
Ananyaa, a product designer, reports that the packaging of all products is not easy to understand, especially for the visually impaired. The Braille dot height and other dimensions should be laid down uniformly so as to provide maximum ease of access with minimum effort.
She emphasises the need to adopt the ‘universal design’ approach for packaging the products and notes four factors that are most important during the process:
First, the packaging must be inclusive of people with different disabilities.
Second, there must be a universalisation of accessibilities, considering the varying cognitive abilities of persons.
Third, the packaging must ensure that the consumer experiences maximum comfort.
Lastly, the tolerance of human errors.
“The overall packaging can be improved if clear and enforceable guidelines are laid down to facilitate the universal design. An essential commodity, medicines should be made on the principles of universal design so that they can be accessed by all,” Ananyaa adds.
Economics of disabilities
On the flip side, a manager at an Indian pharmaceutical company, who wishes to remain anonymous, says that Braille embossing will lead to inflated production costs.
He opines, “Everything is connected with demand and cost. If there is a high demand for Braille-embossed medicines, then companies will scale up the budget for packaging. However, it will raise the overall cost of the medicine and will hit the pockets of the patient.”
Also read: A critical analysis of the Supreme Court’s report on accessibility
He believes that certain issues hamper the production of Braille packaging. A very feeble amount of the gross domestic product (GDP) (0.07 percent) is spent on research and development and pharmaceutical companies have not yet found an effective method to emboss Braille at a minimal cost to the consumer.
“In Braille packaging, the cost increases, which can be paid by people having better purchasing power (outside India), hence the export business remains profitable rather than the domestic consumption of it,” he adds.
“Visually impaired people are aware of these issues,” says Zuhaib, and believes that “ignoring the visually impaired population is a regressive step in Prime Minister Modi’s ‘Sabka Saath, Sabka Vikas’ vision.”
A very feeble amount of the gross domestic product (GDP) (0.07 percent) is spent on research and development, and pharmaceutical companies have not yet found an effective method to emboss Braille at a minimal cost to the consumer.
He offers a suggestion to the pharmaceutical conglomerates, “If the cost of the medicine increases too much due to Braille embossing, a small strip of Braille script can be rolled and put inside the packaging of the tablets, ointments, syrups and other essential medicines of regular use along with the first aid boxes.”
Rajosara notes that it is practically impossible to put every detail on medicines as the Braille font is relatively larger than the normal one. However, he also suggests that certain basic information such as the date and name of the medicine can be written in Braille.
He concludes by highlighting the need for awareness among the public about the importance of accessible packaging: “Impaired people strive to work independently, like everyone else in society, and hopefully, the infrastructure also supports them in their quest.”