Vertical alignment
For the functionally limited, prostheses and assistance devices are a necessary but pricey expense… Does this equipment need to be prohibitively costly?
Bent willows
Prosthesis and assistance devices can make or break people ... but despite numerous private efforts to find finances and meet the need, they are merely a drop in the bucket
By Faiza Ilyas
Some friendships are crafted over a cup of tea, others bonds are forged in shared adversity. Ghulam Rasool Durrani and Abdul Hakeem Shahnawaz’s companionship is one based on solidarity and understanding: both are victims of polio contracted in childhood but neither of the two found assistance from any quarter to help them on their feet.
“My life depends on these crutches. But sometimes I wish I had an existence without them — that I could stand without their support and didn’t have to look for any help,” says Durrani, a shopkeeper residing in Pathan Goth, a small town part of taluka Rohri, district Sukkur.
Now in his early 30s, Durrani started using wooden crutches early in life. When he was just one-year-old, both his feet were paralysed. It was only much later in life that he discovered there was no cure for the debilitating disease.
“Unfortunately, there is no facility to assist people with disabilities even in Sukkur city, so what can one expect in a remote village like ours?” he regrets, arguing that since the rural poor lack access to quality healthcare, the number of physically challenged people is much higher in rural areas than what exists in official documents.
Durrani’s friend, Shahnawaz, is also a polio victim but undeterred by the challenges that he had to face due to his disability, he now runs a non-governmental organisation (NGO) working for the welfare of physically and mentally challenged people in his district.
“The plight of jobless physically challenged people, forced to stand in queues for long hours by government officials, motivated me to set up an NGO for their wellbeing back in 2005,” he recalls.
With about 650 members, including 100 children and 150 women, the NGO has succeeded to get some support from the Baitul Mal as well as from lawmakers and philanthropists. Over the years, this assistance has yielded financial support for some families, mobility aids and jobs to special people.
And yet, argues Shahnawaz, the number of beneficiaries is very small. “This is absolutely not enough. A major support from the government should be to provide the physically handicapped with artificial limbs that would raise their confidence level and make them self-dependent,” he says.
Riaz Memon, who works at the Chandka Special Education for Visually Handicapped Children, district Larkana, and heads the Pakistan Association of the Blind-Sindh chapter, concurs with Shahnawaz’s assessment. He says that artificial limbs and assisted devices make a huge difference in the life of a person in need, but with few limited facilities, a large population has been deprived of using their full potential in life. “There is no facility to provide artificial limbs to the physically handicapped in the province, excluding Karachi, which has at least four such centres,” says Memon.
A beneficiary of one such facility at the Indus Hospital is Mohammad Kashif, a resident of Lines Area in Karachi, who sustained injuries in a traffic accident three months ago.
“I received injuries on the same leg that was earlier operated upon a decade ago and fitted with a rod. For three months, I couldn’t go to a good medical practitioner for advice, even though I was in acute pain,” he recounts, explaining that he didn’t have enough money to pay the doctor and by the time he did visit a medical expert, the infection had spread to the entire leg.
On someone’s recommendation, Kashif went to the Indus Hospital, a free-of-charge private health facility, where he says doctors tried their best to save his leg. But, it was too late; the infection had turned cancerous.
“I was asked to wait till a hospital bed was vacant and luckily my turn came just after a week. I was immediately admitted and my leg was cut off,” he says.
Once his wounds healed, Kashif was fitted with a prosthetic leg after undergoing multiple examinations to develop the right kind of support required for him as well as training sessions to learn how to use it. Today, he is all praise for the Indus Hospital.
“I received the best treatment at the hospital for which I didn’t have to spend a single penny from my own pocket. With this artificial support, I am feeling very confident, mainly because I don’t have to depend on anyone. It’s very convenient to use; I can sit and walk easily,” he expresses satisfaction.
The physical rehabilitation centre at the Indus Hospital launched in March this year, explains Syed Abdul Mussaver Shah from the Chal Foundation, an NGO working in collaboration with the hospital and the International Committee of the Red Cross (ICRC) to run the facility. The rehab facility is a joint venture of the three organisations.
“Assisted devices transform lives. Among these tools, prosthesis, orthosis, walking aids and wheelchairs are required by the majority of the people with physical disabilities. We are not only manufacturing and fitting artificial limbs free of cost but also assessing, counselling and training disabled persons to help them get maximum benefits from the use of these devices,” says Shah.
More than 4.5 million people suffer disabilities in various forms in Pakistan, according to Shah, with the disabled population increasing as a result of population growth, ageing, chronic conditions, malnutrition, conflict, landmines, violence, road traffic accidents, domestic and occupational injuries and other causes often related to poverty.
“These trends are creating an overwhelming demand for health and rehabilitation services,” he contends.
With the present population of Karachi estimated at 25 million, Shah argues that there are an estimated 125,000 people who are in need of prosthetic and orthotic devices. “On average, each person already using an artificial support needs a new device every three years, meaning that approximately 41,000 persons with physical disabilities should have access to these services per year. The present facilities in Karachi are estimated to cover less than five per cent of the city’s need and less than one per cent of Sindh,” he says.
Sharing the success and challenges in this particular area, Prof Dr Bakht Sarwar, an authority in the fields of prosthetics and orthotics in Pakistan currently heading the Chal Foundation and Pakistan Institute of Prosthetic and Orthotic in Peshawar (Pipos), says that last year more than 21,000 people were fitted with free-of-cost artificial limbs at the 19 centres being run by the foundation and Pipos.
“We could never achieve this without the ICRC’s sustained assistance. It provides us with the raw material required to manufacture the different components and devices required to replace a body part or provide support to the body,” he says, adding that the ICRC has contributed immensely on the technical and training side as well and has offered 12 scholarships this year to students receiving training in prosthetics and orthotics.
Patients requiring amputation, says Dr Sarwar, need to be handled carefully by surgeons who must consider the fact that the body should be treated in a way that it could later be fixed with an artificial limb or device.
In cases presenting with complications like contractures, he says, artificial support can be offered to the patient after surgical intervention. Though young age does play a role in better outcomes, older patients could also be helped depending on the nature of each case.
“We are offering patients good quality easy-to-use limbs and assisted devices but they are not very high-tech because of the high costs involved,” he says.
About plans to extend the services to other parts of Sindh, Prof Sarwar says there is no dearth of funding but what is required is a group of local people who could own the project once the artificial limbs facility starts operating.
“We need committed people who could own and run the centre once we have started its operation and trained the staff. Efforts are on in collaboration with the government of Punjab to set up such centres there. The province recently has its first artificial limb centre while there is one in Quetta. Both facilities are developed by the foundation,” he says.
Another facility serving people with disabilities in Karachi is the Institute of Physical Medicine and Rehabilitation of Dow University of Health Sciences, which has been in operation since 2007 and serves about 1,000 patients annually.
“One of the facility’s vital functions is to provide free of cost limbs and assisted devices to deserving patients. Since 90pc of the patients cannot afford to pay for the services, there is always a need for more funds,” argues Kamran Yousuf Siddiqui, manager of the institute.
New frontiers: print your prosthetics
Mobility assistance devices used to be expensive because of the labour costs involved. There is now a cheaper (and quicker) alternative out there ...
Pinch yourself in disbelief: if you were ever in need of prosthetic aids, but have been waiting for a messiah to build you one, there is no need to wait anymore. The innovative world of 3-D printing now allows you to simply print your limb, albeit with the help of your doctor.
3-D printing is actually additive printing, a process whereby three dimensional objects are created from a digital design. The objects are created by laying down thin successive layers of material until the entire object is created. Each of these layers forms a thin horizontal cross section of the final object. These objects can be of almost any shape or geometric feature, and are made with liquid or powder of plastic, sand, metal, nylon, etc. — though plastic is the most widely used material.
In the past, those who needed prosthetic and assistance devices relied heavily on skilled labour to craft their artificial limbs from scratch. According to a report published on BBC News, there are an estimated 30 million people worldwide who need prostheses such as a hand, arm or a leg. With standard prostheses, a person regains freedom and functionality, but they are very expensive as skilled technicians are required to customise them for each patient, and take weeks to build.
Here is where 3-D technology has come to the rescue, as it allows doctors and engineers to come together and rebuild limbs, faster and cheaper.
To create a 3-D prosthesis, the remaining part of the patient’s lost limb and the other limb are first scanned to create a highly precise 3-D virtual model, in order to match the anatomy “within fractions of a millimetre.” Some technologies also allow capturing leg tissue properties, so that the remaining part of the limb and the socket fit better and the wearer feels more comfortable. The prosthesis is then hollowed out to reduce weight. The model is then sent to a 3-D printing facility where the scan is fed in a 3-D printer to create a perfect fitting prosthesis.
With 3-D printing not only is the cost lowered but the prostheses are much more comfortable and functional. Whereas a commercially made prosthesis usually costs between $5,000 to $50,000 (depending on the material and functionality), a 3-D prosthesis costs only a few hundred dollars and allows better functionality and comfort.
While most people using conventional prosthesis experience prosthetic socket discomfort, with newer technology 3-D printed prosthetic socket promise far superior and comfortable prosthetic sockets.
A 3-D prosthesis also has the advantage that it can usually be created in a day — considerably less time than the weeks needed to produce them by hand and adjust for personal use.
Children out grow their prostheses and these have to be replaced from time to time as they grow, which can be pretty expensive. But with the lower cost and ease of production of 3-D prosthesis, replacing them would not be so difficult. Additionally, research is underway and scientists are hopeful that in the near future “stretchable and expandable 3-D prostheses” may soon be available.
Though 3-D printed prostheses are still not the norm, David Dean, an associate professor in the plastic surgery department at the Ohio State University, believes that 3-D printing will soon become the norm. In a report published on US News, Dean predicts the onset of a revolution: “You’ll be seeing 3-D printed hip and knee replacement become standard before long.”
Disentangling disability
Those who lose their limbs in accidents or disease don’t become pariahs overnight ... Dr Nabila Soomro of the Institute of Physical Medicine and Rehabilitation (IPMR), Karachi, argues it is high time society gives them a chance to live
Twenty minutes had already gone by since the power cut recurred on a hot, muggy Karachi afternoon. Wiping the sweat trickling down his temple, 42-year-old Mirza Zakir Baig fought with what seemed to be a radiator fan issue with the generator that he had to fix before the factory manager yelled over production time loss. He fiddled with an errant wire, a connection sparked and the fan moved. And then it was agonising pain that took over everything else.
“In just 16 seconds my right hand was destroyed forever,” he recalls the 2007 incident, when he lost his right hand. Eight years later, Zakir, a soft spoken man now works as a receptionist at the Institute of Physical Medicine and Rehabilitation (IPMR), Karachi, which provided him not only with an artificial limb but also a job. He lives in Orangi and has two school-going daughters.
In a similar twist of fate, Fakhar Sheikh, 39, was crushed by a speeding tanker on the pavement in Orangi, where he waited for the bus to take him to work at a real estate firm. He was lucky to have survived but lost a leg. Presently, he too works at IPMR, handling the photocopier; a job that enables him to arrive to work on his motorcycle and to look after his four children.
“There are thousands of success stories,” says Dr Nabila Soomro, who heads the IPMR. “People who have been amputated here or have had new limbs made, all lost their jobs. We have provided jobs to many patients as it is important to absorb them back into society with dignity. We do not use the words disability, impairment or handicap; anymore. Instead, we use the word functional limitation.”
Soomro argues that there is a need to change society’s mindset about the functionally limited.
“In our society, we just put a little money in their hands, rip off their dignity and send them out to face the adverse. If they cannot do the same kind of work anymore because of the amputation, workplaces should hire them in a new capacity,” she argues.
Affiliated with the Dow University of Health Sciences (DUHS), the institute was envisioned by Prof. Masood Hameed, the incumbent vice-chancellor, and is the first civilian interdisciplinary institute to rehabilitate all kinds of functional limitations. “There was just one proper functional institution of rehabilitation medicine, of the armed forces but it catered to the needs of the Army. No civilian facility existed until the development of this one in Karachi,” says Soomro.
India has over 50 such institutions and even Bangladesh has over 30. What makes this institution unique is that it is multi-disciplinary and offers services in six disciplines such as physiotherapy, occupational therapy, prosthetics and orthotics, centre for child development, neuropsychology, and speech therapy — all under one roof.
About 150 trained and qualified professionals working at the institute include physiotherapists, occupational therapists, orthotists, prosthetists, vocational therapists, speech pathologists, social workers and special educationists.
The prosthetics and orthotics department provides teaching and training facilities for the students who are taught how to take measurements, how to design, fabricate and make different orthosis and prosthesis. Once they are fully trained, they get to work with patients under qualified supervision.
Discussing the situations where artificial limbs are required, Soomro says there are an increasing number of patients who need amputation rehab services due to trauma, road accidents, bomb blasts and also due to an alarming increase in diabetes.
“During the time when bomb blasts were an everyday occurrence, patients frequently came in with broken limbs, burns and gangrene due to shells or shrapnel. But the major brunt is diabetic amputation and road-traffic accidents,” says the doctor. “Our data shows that there are way more diabetic patients than bomb blast victims, most of them being men over 50, more urban than rural. Diabetes, a disease that is preventable often leads to amputation of a lower limb. From the rural areas of Sindh, we get children and women from accidents on the chara-cutting machine.”
Till date, some 5,000 patients have arrived at the institute for prosthesis and orthosis needs since its inception in 2007. “It takes three to four weeks for an artificial limb to be made. To begin with, measurements are taken and the cast is made after which fabrication is done and the skin colour is matched. Finally the joint is attached. It takes another two weeks for gait training and functional training of the upper limbs. When the patients can function independently, they are sent home, but are instructed to come back if they have any complaints like a change in the body, splints or the prothesis or if they feel pressure at any point.”
Eighty per cent of the patients coming to the IPMR cannot afford to pay and get the artificial limb made for free. “The artificial limb costs Rs100,000 in the market. Here, it is only for Rs15,000. The joint and the stump are made of different materials and we use very simple technology which we have been changing from time to time, following international standards. We also try to upgrade ourselves but that is very expensive. That is why funds are so important,” she points out.
The IPMR zakat budget and some Dow University funds help pay for the patients who cannot afford treatment. “As a doctor, I get no time for funds management but I feel that people should come forward to pool in funds and efforts and make an independent society like the Friends of the Functionally Limited, which would work to collect funds. This way the monetary side of managing funds for patients or children could be taken care of. Schools and communities should help create awareness while physical medicine and rehabilitation departments should be set up at all medical universities so as to bear the brunt.”
Apart from the need for the government to allocate a separate budget for the functionally limited, Soomro feels that the issue of disability certificates needs to be addressed. “The social welfare department currently issues this certificate, whereas the doctors who actually deal with the patient should be actively involved in the issuance of this certificate because only they know what the person can or cannot do to actively contribute to society. There is no transparency in the procedure and anyone can get this certificate for a job on the disability quota.”
Wheels of mobility
Times are changing in Karachi’s oldest medical equipment market: with the advent of online marketplaces, there is great demand for cheaper aids
Were it not for the internet and Chinese products, Murtaza Abid of Fatmi Surgical could have carried on doing business the way his father and grandfather used to.
“The dynamics have changed, we are taking the internet seriously,” says Abid, whose family has been running the business for over five decades now. “We are importers and also wholesalers of surgical and mobility equipment for many shops in the city. The prices we can offer you are the cheapest in the country, because we deal directly with sellers.”
The medical supplies market near Lucky Star in Karachi is considered the hub for surgical and mobility equipment. Most shop owners are importers of various equipments that are not found in any other part of the city.
Several shop owners in the market claim that internet is their new frontier, as a lot of potential buyers are looking for cheap deals online. Although no shop has fully embraced the avenue of online sales, there is some movement in shops where the younger generation is taking over the reins of business from their elders.
“We do some business online; we take some orders from clients for example, and we deal with our suppliers online. Some footprints are also left in business diaries and other Facebook pages,” says Abid.
People with movement disability can choose from a range of accessories available in the market. From an automatic wheel chair to a homemade hand-pushed cart, it all depends on the kind of disability one has and — not to mention — the depth of their pockets.
A manual wheel chair can cost between Rs7,000 and Rs15,000, which is usually preferred by people with waist-down paralysis. It is also a popular choice among people suffering from old-age muscular ailments that restrict their movement. Then there are wheel chairs with special hydraulics, which starts from Rs15,000 onwards. But interestingly, almost all kinds of mobility equipment have a decent resale value. If used with care, the equipment is often bought by the shops that sell you these products.
“Nowadays, people go for better quality Chinese brands which are light in weight and durable,” says Kashif Pervez, one of the partners at Progressive Surgical, a specialised retail outlet for medical equipment near Lucky Star in Saddar.
But for somebody looking for functional wheel chairs that are more affordable, internet marketplaces such as OLX have opened up a new avenue: second-hand equipment at half the price. With various options on offer, it is often the best fit that works rather than the most expensive.
One young man who had to experiment his way through is 23-year-old Mohammad Rameez. Two years ago, he had a near-fatal motorbike accident. It was drizzling that day, and when his bike slipped at about 80kmph near Nursery on Shahrea Faisal, Rameez’s left knee hit the kerb. “I heard it crush,” Rameez solemnly says about his knee.
He fainted from the excruciating pain. His doctors installed a rod in his leg and plastered the wound, in the hopes that it would heal on its own. But within a few months, Rameez realised his bone damage was most likely permanent. Today he walks with a crutch balanced under his left arm.
“For the first few weeks, I was restricted to my bed. Then the doctors advised me to walk with a four-legged walker,” he recalls. “It was not easy to learn to walk all over again.”
After four months, he switched to a crutch. “It was a lot more convenient, lighter and easy to handle.”
Crutches are perhaps the most widely used movement aid for the partially-disabled. Mostly made of wood or plastic, crutches are recommended by orthopaedics for bone fractures, when a foot is unable to take weight of the body. But perennially disabled people are also forced to use crutches, sometimes for life.
“A pair of crutches cost around Rs2,000 to Rs3,000, based on the quality of the material,” says Bashir Ahmed, a salesperson at Karachi Surgical. “Unlike other equipment, local crutches are way more popular and cheaper too.”
Very similar to the crutches are walkers that are mostly used by people recuperating from bone fractures or walking after a long rest. The cost of a walker ranges between Rs500 and Rs 2,000, again depending on the quality, with local ones being on the cheaper side.
Though not meant for those suffering from long durations of immobility, the walkers are considered to be crucial for the recovery of bones and are very similar to the walkers used for crawling babies to help them stand on their feet.
But then there are folks such as polio victim Javed Aslam. Since the age of seven, he has not been able to feel any sensation in his left leg. And for as long as he remembers, he has been confined to a wheelchair.
“It is more comfortable but sometimes I take the crutches too. As a 40-year-old man with obesity, the wheel chair is always a better option,” says Aslam. “I use crutches when I feel active, say when I want to go for a walk. But mostly I take the chair because crutches take a lot of strength. My hand begins to hurt after a while, especially in the summers. It’s about convenience.”
Electric wheel chairs are also available in the market but they are prohibitively expensive. Pervez explains electric chairs are the fanciest type offered in this line, costing between Rs90,000 and Rs120,000. “It is a slow moving product. We don’t keep it in the shop because it is hardly sold, but we can arrange it on order,” he says.
Then there is the tricycle, which is manoeuvred by hand. It can cost between Rs8,000 and Rs12,000, depending on the various quality grades. “It is not a popular vehicle as such, but is mostly used by people who like to travel short distances on their own — especially disabled people who work near their homes. And it is relatively cheap too,” says Abid, adding that his shop is one of the few in the city that assembles the cycle on their own. “We take orders and manufacture the cycle with imported equipment.”
The cheapest in the wheel-run line are handmade carts, mostly used by people who can’t afford a wheel chair. These carts are not sold in shops but are crafted by artisans using wooden plates, which are attached with metal cogs which work as wheels. The cogs are mostly hard metal rolls used in heavy industrial machinery. Abid estimates a cart can be manufactured within Rs1,000. “Maybe the costs incurred are even lower than my estimates.”
In the case of Mohammad Iftikhar, who came to Karachi from Multan for the month of Ramazan with the express purpose of begging, it was his eldest son who crafted the hand-driven cart for him.
“It’s cheap and easy to make,” says Iftikhar, before dismissing the virtues of a wheel-chair. “That’s not for us. It is for people with money.”
Owing to diabetes, both his legs were amputated a long time ago. Chaperoned by a little boy, Ifitikhar rides a hand-made cart to scuttle between cars at traffic signals. Since he is a guest in the city, he is forced to shift his locations every three to four days because the “permanents” at the traffic stops just don’t tolerate him more than that.
“A handmade cart can run for years if it is properly maintained. The wheels needs to be oiled else they’ll get corroded. And the board atop should be made out of solid wood.”
The writer is a freelance journalist. He tweets @AmmarShahbazi
Published in Dawn, Sunday Magazine, July 12th, 2015
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